I have been quiet over the last few days because I have had my big bro and his beautiful wife in London visiting me. I think the Monster is scared of my big brother because suprisingly he has been well behaved, not silent but a load better than he has been. I have had such a wonderful time with my brother and sister in law, they are such amazing company and they spoil me rotten. We went for dinner in the Oxo tower which is on the South Bank and has an amazing view of the city. It was a lovely night and we saw Vivenne Westwood, which I was fansinated at, not because I was in awe over her but becasue I was intrigued at the way people behaved around her. So we had a lovely evening there and then the following day we had lunch down near our work place. The Man gave them a tour around the area and I have never noticed just how much he knows about the area. Big Bro and FP went off to the football later in the day and I gutted my room.
Hey I really want to keep writing but my eyelids are closing involunatary, I am so so so tired. Oh I should mention that i have been busy busy today, said goodbye to Big Bro and FP, bought loads of clothes I hated (think the Monster made me do it) , returned loads of clothes that I hated, travelled to Portsmouth, went to Nanny and Grampy's, went out for dinner with them, Aunty P and Uncle S and my folks and now I am writing to you. I think that it a lot.
Monster has been reasonably well behaved like I said but he has been keeping me awake through the night, I guess he thinks it is funny when I have things to do but hey he will learn. So I am going to sign off just now and write letter.
Night night lovelys, I will write again soon xxxx
Wednesday, 29 September 2010
Tuesday, 28 September 2010
The Day Wilson Entered the World
Wow, what an exciting day. Firstly my big bro and his Fairy Princess travelled all the way to London to see me and then Wilson was born. Ok, so here are the very first pictures of Wilson (name yet to be confirmed)
Isn't he stunning. I am one extremely proud Aunty. He is Gorgeous and I can't wait for a cuddle from him.
Sunday, 26 September 2010
The Power Of A Dad's Cuddle
Ok, Saturday. The Man and I got up and watched a brilliant documentary about Bernie Madoff, and learnt that names ending in ‘off’ originally ended in ‘ov’ but it was changed and it means ‘son of’, it originates from Russia. The doc was awesome, what a genius Madoff was, not that I agree with what he was doing but wow, to fool the world with such a simple concept, that is truly amazing. As we watched Monster woke up, stretching and scratching me inside. It is definitely clear when he wakens and for the first hour or so it is quite uncomfortable but as he settles it is easier to deal with him.
The Michaelmas Fair was on in Alverstoke Village so we walked along and I met up with my housemate Gwaltz and her man Jamie. We had lunch outside in The Old Lodge, in the sun which was lovely. We then walked along to the Cox for a drink. It was nice to show Gwaltz the other half of my world, my little sanctuary. Some of the boys were in there and told me about the Wake, I was surprised to see them actually because I thought they would all be nursing hefty hangovers. We stayed in there for longer than we should have, I had too many wines and knew it at the time but it was so nice to see folk and relax with them I couldn’t help it (told you I was a slow learner). We got back later than we should have because as we left the pub Jen (Skelly’s wife) said something that finally broke me. I couldn’t have a hard face anymore and I finally let myself cry for him. It was a tough one but when we got home my Daddy cuddled me and made it all better. It is an amazing thing the power of a Dads cuddle when the world doesn’t make sense. I can honestly say the place I feel safest in the whole world is curled up cuddling into my Dad.
My day I thought ended when I fell asleep on the Man’s lap as we all watched a film, little did I know Monster would waken at about 12am and start to play. I really should have trained him out of orchestra practice after midnight. He made my fingers ache, my insides shock and my head pound (this might have had something to do with the 4 glasses of wine I had had earlier in the evening). The Man kindly stayed awake with me, I spoke to my bro in America for about 30 mins, and finally at 3am I couldn’t take it anymore I threw up. Pleasant I know but this is it, Me, Myself and Monster. The Man was so patient with me and played with my hair until at about 3.30am I finally dropped off to sleep. I woke through the night a couple of times with shocks but somehow the Man was there waiting to stroke my hair until I fell asleep again. I honestly don’t know what I did to deserve this lovely treatment but it does make life with the Monster slightly more bearable.
Today has been a slow one, the rough night did not break me and failed to even put me in a bad mood. We started off slow and then Mum picked us up and took us down to the club house for some lunch, which Dad paid for again. I have told Mum and the Man if we keep letting him pay then we won’t get invited down anymore (only joking). The meal was lovely and the company was a million times better, and I got ice cream he he he! We went to see the boat (Mum and Dad are renovating a Vancouver 27, Sedna) and they have made loads of progress, she is looking so much better than she did when I last saw her. Finally I am on the train back to London now with the Man and I think it is nearly time to sign off.
Can I just remind all you readers that you are more than welcome to add comments whenever you want. Feedback, spelling/grammar corrections anything at all. Yep even some friendly abuse is always welcome, tell me not to be such a whinge, or to treat the Man nicer or to kick Monster in the head. I would like some input from you.
Loves to you xxxx
P.S 1 more sleep till my Big Bro and his Fairy Princess arrive. Woop Woop!
The Michaelmas Fair was on in Alverstoke Village so we walked along and I met up with my housemate Gwaltz and her man Jamie. We had lunch outside in The Old Lodge, in the sun which was lovely. We then walked along to the Cox for a drink. It was nice to show Gwaltz the other half of my world, my little sanctuary. Some of the boys were in there and told me about the Wake, I was surprised to see them actually because I thought they would all be nursing hefty hangovers. We stayed in there for longer than we should have, I had too many wines and knew it at the time but it was so nice to see folk and relax with them I couldn’t help it (told you I was a slow learner). We got back later than we should have because as we left the pub Jen (Skelly’s wife) said something that finally broke me. I couldn’t have a hard face anymore and I finally let myself cry for him. It was a tough one but when we got home my Daddy cuddled me and made it all better. It is an amazing thing the power of a Dads cuddle when the world doesn’t make sense. I can honestly say the place I feel safest in the whole world is curled up cuddling into my Dad.
My day I thought ended when I fell asleep on the Man’s lap as we all watched a film, little did I know Monster would waken at about 12am and start to play. I really should have trained him out of orchestra practice after midnight. He made my fingers ache, my insides shock and my head pound (this might have had something to do with the 4 glasses of wine I had had earlier in the evening). The Man kindly stayed awake with me, I spoke to my bro in America for about 30 mins, and finally at 3am I couldn’t take it anymore I threw up. Pleasant I know but this is it, Me, Myself and Monster. The Man was so patient with me and played with my hair until at about 3.30am I finally dropped off to sleep. I woke through the night a couple of times with shocks but somehow the Man was there waiting to stroke my hair until I fell asleep again. I honestly don’t know what I did to deserve this lovely treatment but it does make life with the Monster slightly more bearable.
Today has been a slow one, the rough night did not break me and failed to even put me in a bad mood. We started off slow and then Mum picked us up and took us down to the club house for some lunch, which Dad paid for again. I have told Mum and the Man if we keep letting him pay then we won’t get invited down anymore (only joking). The meal was lovely and the company was a million times better, and I got ice cream he he he! We went to see the boat (Mum and Dad are renovating a Vancouver 27, Sedna) and they have made loads of progress, she is looking so much better than she did when I last saw her. Finally I am on the train back to London now with the Man and I think it is nearly time to sign off.
Can I just remind all you readers that you are more than welcome to add comments whenever you want. Feedback, spelling/grammar corrections anything at all. Yep even some friendly abuse is always welcome, tell me not to be such a whinge, or to treat the Man nicer or to kick Monster in the head. I would like some input from you.
Loves to you xxxx
P.S 1 more sleep till my Big Bro and his Fairy Princess arrive. Woop Woop!
Massive design flaw God-do.
So apologies readers for the lack of comms over the last few days, Monster, Geraldine, the Man and I have had a bit of an adventure. It was Skelly’s funeral on Friday and that was possibly the saddest day I have known in my life. Things have happened to me over the years and I have lost people in my life before but never have I been so affected as losing Skelly. He was someone that I have both respected and cherished ever since the first day I met him and still I feel like this is a big misunderstanding and God will return him to us and take another A-hole that deserves a short ending. It has proved to me over the last few weeks that the short time we have in this world should be spent learning, getting know people, caring about others and yourself and trying to improve the world around you. Skelly might be gone but what he left behind will never be forgotten, he brought so many of us together in the Cox and our friendships now will have to last, in his memory.
The funeral itself was very emotional and very touching. Actually when I say touching I do mean it, I must have touched the arse of the boy in front of me about a hundred times through the service, every time I lifted the tissue to my nose, I stroked his butt. The crematorium was so packed that we could hardly all fit, there must have been nearly 200 people if not more. The service was short but true to him, as we went in they played Robbie Williams ‘Angel’, half way through the service they played Spandu Ballet ‘Through the Barricades ‘ and right at the end we all left to Gerry and the Pacemakers ‘You’ll never walk alone’ (anthem of Liverpool Football Club). After everyone headed back to the Cox (The Fighting Cocks) and drank to Skelly. Through the whole time I have drank in the pub faces have come and gone but everyone appeared to say their goodbyes.
I had to leave the Wake to go and see my Doctor, I know exciting times. Weirdly enough I found out that Skelly and I share the same Doc. Hope he does a better job with me or I will haunt his educated arse for eternity. No, that is unfair I am sure that Doc did everything he could for Skelly. He agreed with me about the Lumber Puncture and said that he had no issue with referring me to Dr.Elrington so that is good, thank goodness because there might have been police cars and cell doors in this story if he had argued with me. Sorry to disappoint you but my day ended with one glass of wine at the wake and falling asleep on the Man watching a film with my Mumma and Pops.
So Friday was a whole mixture of emotion for me, I am not good with emotion so I find it exhausting. Lucky for me the Man was with me all day and helped me through it. Monster was there as well and of course Geraldine. Monster must have known I was having a tough time and was relatively well behaved. Obviously he wasn’t silent but he did leave off the shocks and I think I only had 4 relatively small ones. I went to bed and slept reasonably well all things considered.
I think that some people are so funny when interacting with you when there is some thing different about you. People who I have known for about 6 years, all talking and laughing round the pub and some show honest concern for you, others just look and instantly take the piss. I know that it is exactly what I would do but if is an odd experience being on the receiving end of it. I am not one for blabbing about it too much some when people asked me I just said I had a knee injury, folk laugh and ask you if if was a ‘drunken injury’, guess that makes it easier because had it been that, there would be a 99.9% chance drink would have been involved. So people that I have been close to in the pub were weirded out by Geraldine and I think had no idea what to say about it, which also kind of made it easier.
Simon should have known better but chose not to be apart of my life and that still hurts, I have been ditched for yet another mental case with severe insecurity issues causing Simon and I never to speak. I didn’t actually realise how much it bothered me until I saw him again. We used to be so close, meeting for a beer, putting the world to rights, laughing at each other but always knowing we had each others backs. I knew that things would change when he got a girlfriend, they always do but I just never realised that it would mean totally sacrificing our entire friendship. He said that he felt like he was lying to her but I can’t understand what about, why can he not be my friend, what is so damn bad with being my friend. I don’t want him in any other way than as a friend, he obviously really likes this girl. I know this has nothing to do with anything but it is bothering me, at the moment I want my true friends to be around me, to make me forget the monster but I feel that there is a gap, another hole in my life where someone should be and the weirdest thing is that he is still alive just nothing of the man he once was.
A running theme in my life has been male friends are quickly banned from being my friend as soon as they get a women. I have no idea why this is because to be fair I am never romantically interested in them, we are just friends. What is so wrong with me that most women see me as this massive threat? ‘Lock up you men folk, Jess is coming!’ It is ridiculous, since when did the women race become so psychotic? I don’t think that I am like this at all, don’t get me wrong I get jealous, that is natural but honestly, banning your man from seeing a friend seems a little extreme. The only person I think I have not had issues with regarding this problem is my bestest male friend (in the world) Neil C, he basically tells women to make the effort or shut up. I like this approach, better!
Enough whinging about men and their ridiculous ways, actually before I wrap this up I truly believe that ‘God only gave men enough blood to operate on organ at a time, his brain or his w***y, never do you find one that can operate both at the same time’. I think this is the best and truest statement said since the beginning of the human race. Massive design flaw God-do.
The funeral itself was very emotional and very touching. Actually when I say touching I do mean it, I must have touched the arse of the boy in front of me about a hundred times through the service, every time I lifted the tissue to my nose, I stroked his butt. The crematorium was so packed that we could hardly all fit, there must have been nearly 200 people if not more. The service was short but true to him, as we went in they played Robbie Williams ‘Angel’, half way through the service they played Spandu Ballet ‘Through the Barricades ‘ and right at the end we all left to Gerry and the Pacemakers ‘You’ll never walk alone’ (anthem of Liverpool Football Club). After everyone headed back to the Cox (The Fighting Cocks) and drank to Skelly. Through the whole time I have drank in the pub faces have come and gone but everyone appeared to say their goodbyes.
I had to leave the Wake to go and see my Doctor, I know exciting times. Weirdly enough I found out that Skelly and I share the same Doc. Hope he does a better job with me or I will haunt his educated arse for eternity. No, that is unfair I am sure that Doc did everything he could for Skelly. He agreed with me about the Lumber Puncture and said that he had no issue with referring me to Dr.Elrington so that is good, thank goodness because there might have been police cars and cell doors in this story if he had argued with me. Sorry to disappoint you but my day ended with one glass of wine at the wake and falling asleep on the Man watching a film with my Mumma and Pops.
So Friday was a whole mixture of emotion for me, I am not good with emotion so I find it exhausting. Lucky for me the Man was with me all day and helped me through it. Monster was there as well and of course Geraldine. Monster must have known I was having a tough time and was relatively well behaved. Obviously he wasn’t silent but he did leave off the shocks and I think I only had 4 relatively small ones. I went to bed and slept reasonably well all things considered.
I think that some people are so funny when interacting with you when there is some thing different about you. People who I have known for about 6 years, all talking and laughing round the pub and some show honest concern for you, others just look and instantly take the piss. I know that it is exactly what I would do but if is an odd experience being on the receiving end of it. I am not one for blabbing about it too much some when people asked me I just said I had a knee injury, folk laugh and ask you if if was a ‘drunken injury’, guess that makes it easier because had it been that, there would be a 99.9% chance drink would have been involved. So people that I have been close to in the pub were weirded out by Geraldine and I think had no idea what to say about it, which also kind of made it easier.
Simon should have known better but chose not to be apart of my life and that still hurts, I have been ditched for yet another mental case with severe insecurity issues causing Simon and I never to speak. I didn’t actually realise how much it bothered me until I saw him again. We used to be so close, meeting for a beer, putting the world to rights, laughing at each other but always knowing we had each others backs. I knew that things would change when he got a girlfriend, they always do but I just never realised that it would mean totally sacrificing our entire friendship. He said that he felt like he was lying to her but I can’t understand what about, why can he not be my friend, what is so damn bad with being my friend. I don’t want him in any other way than as a friend, he obviously really likes this girl. I know this has nothing to do with anything but it is bothering me, at the moment I want my true friends to be around me, to make me forget the monster but I feel that there is a gap, another hole in my life where someone should be and the weirdest thing is that he is still alive just nothing of the man he once was.
A running theme in my life has been male friends are quickly banned from being my friend as soon as they get a women. I have no idea why this is because to be fair I am never romantically interested in them, we are just friends. What is so wrong with me that most women see me as this massive threat? ‘Lock up you men folk, Jess is coming!’ It is ridiculous, since when did the women race become so psychotic? I don’t think that I am like this at all, don’t get me wrong I get jealous, that is natural but honestly, banning your man from seeing a friend seems a little extreme. The only person I think I have not had issues with regarding this problem is my bestest male friend (in the world) Neil C, he basically tells women to make the effort or shut up. I like this approach, better!
Enough whinging about men and their ridiculous ways, actually before I wrap this up I truly believe that ‘God only gave men enough blood to operate on organ at a time, his brain or his w***y, never do you find one that can operate both at the same time’. I think this is the best and truest statement said since the beginning of the human race. Massive design flaw God-do.
Friday, 24 September 2010
There is a massive hole in the world where a great man once stood
I had the best night sleep I have had in a long long time last night, I feel proud of the Monster for leaving me alone. In actual fact I don’t think it was intentional I think that he got caught up in trying to squeeze my bladder to stop me going to the toilet that my body decided to wait until he was ready to let me go, which turned out to be this morning. So I woke up this morning feel pretty refreshed, which I am loving. Monster has woken though and has begun his favourite game at the moment which is playing the xylophone on my ribs and grabbing my lungs and heart in sequence. I think that my Monster would like to be a musician and likes to practice inside me. So he plays the xylophone on my ribs, accordion with my organs the kick drums with my legs, he smashes the finger cymbals on my fingers, plays the washboard down my spine and to round it all off plays the kettle drum to vibrate my insides and make an intense pain in my head. Now you could say that he is a talented little Monster but I tell you what, being his practice room is not much fun at all.
I am hoping that Monster will give me a break today as it is Skelly’s funeral. I imagine that it is going to be a sad sad day. I still can’t believe that he is gone, there is a massive hole in the world where a great man once stood and today we will have to acknowledge that hole and say our goodbyes. So many times Skelly made me laugh and on some occasions made me cry, he was a real person that took everyone at face value. He never bitched about anyone and always fought the corner of those who needed help. He almost single handedly built the games room out the back of the Cox, for the benefit of everyone who drinks there. He used to be a train driver before he got sick and in some respects I think that the stress of it worsened his condition at the beginning. He had the stress of inconsiderate people jumping in front of his train and that really affected him. I feel bad for the people who thought they could not go on but to cause so much heart ache and guilt to someone that never even knew, was criminal, especially when it was someone as big hearted as Skelly. I have added photo’s of him before he got really sick, I was going to add some of him later on but that is not how I will remember him and I don’t want you to know him like that.
Thursday, 23 September 2010
Geraldine, Monster and me
Well I think the time has come that I introduce Geraldine, you should note that we are not really friends she is more of an acquaintance than an a friend and I only know her through Monster. See we have one of those weird friendships where she believes all I do is lean on her, and I must admit that I find her quite embarrassing, not as though she looks after her appearance and she does make people stare at us. Anyway we unfortunately have to spend time together, every time I leave the house she has to come with me. So her she is...please meet Geraldine -
Told you she was a bit dorky didn't I!
So the other thing I achieved yesterday was a Sudoku. This might not seem like an unusual thing to complete a Sudoku puzzle but I began this one on the night I got my diagnosis and I haven't been able to finish until last night, this was slightly monumental for me.
Thought I would add it to see if you guys can crack it quicker than me.
Wednesday, 22 September 2010
Bitty bitty, here and there
So I wanted to tell you about the lovely meal the Man took me out for last night, after the neurologist. He took me to place called Gilgamesh in Camden and it was amazing.here, you can see some pics on the Yellow Brick Road. It was lovely, I feel a bitty bad because at the moment I feel really ungrateful because I am being a bitty miserable, I am not meaning to at all in fact quite the opposite. I just feel that I get tired and irritable when I shouldn't, its never directed at anybody.
My bestest friend in the world sent me a card today and it made me happy and sad. She has been through everything with me and she doesn't even realise how special she is.
Being bitty tonight sorry just can't concentrate :(
Doctor, doctor give me a cure
I had the Neurologist yesterday and it went well -
How do people know type they have?- This is just an outline, at the moment he believes that I have relapsing/remitting MS
Walking is becoming more and more difficult, is there something I can do to stop it getting worse?- There is nothing directly you can do other than steroids, going to the physio will help.
If I took the meds would I have to take them all the time or could I only take them when I am relapsing?- Yes I could take steroids to get over the relapse, I could take other meds to ease some symptoms but the long term affects are not known.
What can I do to prevent the pain?- Rest, listen to my body
What causes the electric shock feelings I am experiencing?- The reason for the electric shocks is the messages from my brain are being interupted my brain then sends pain signals to alert my body there is something wrong.
Is there anyway to preempt where it will strike next?- Listen to your body but NOPE.
Is it true that 1 in 3 people whose legs are affected end up being severely impaired but the disease?- MS affects everyone differently and recording stats like these are near on impossible, don't believe what you read
You said that 40% live normal lives with MS what happens to the other 60%?- MS causes disability in a proportion of suffers and not in others, it is unpredictable
Please can you take me on as an NHS patient?Definately, need to be referred by my doc (got an appointment on Friday, thought he would say that)I would like a Lumber Puncture to just have some more evidence for myself, would you do that for me?- Completely understood why I wanted this, said it is always good to doubt and to gather all the jigsaw pieces to get it straight in my head.
When I am exhausted I get the horrible feeling I am being lazy, is that natural, it gets me down.- Only I can tell if I am being lazy but the exhaustion IS real, it is not in my mind but is in my head. There is no harm in pushing myself, it won't cause anymore damage but there is also nothing wrong with taking some time and living within my own limitations.
I have to say here that I really, really like Dr Elrington. I find that he listens to me and speaks to me as a human being and not just another person he has to see. He also is not trying to push me into taking drugs that have no evidence of their affects later on in life.
Shoem - The doctor said I'm doing great
I'm sitting here wondering why
Monstors sitting so nearby
he's leaning heavy on my back
I think he's going to attack
He slides his hands in my insides
down my organs his nails glide
He makes me feel like i'm his toy
hurting me gives him joys
I know that he's my evil curse
but things could always be much worse
he needs to have all my attention
it's not his fault he causes tention
I need to know what he desires
before all of my nerves expire
why was it that he wanted Jess
I think that I can only guess
I can't believe my lives become
a bad dream where I am numb
but theres a chance that I will wake
and hopefully no longer ache
For now the Monster stays with me
and I think that I must agree
he doesn't scare me anymore
even when he makes me sore
The doctor said I'm doing great
and making Monstor another mate
will help me get through this bad stage
and help me ease the nasty rage
Relapsing is never fun
but then whats done is really done
I could look back into my past
or look just forward and have a blast
I used to think that live was fantastic
but recently I thought it's just sarcastic
I don't believe Monsters sincere
but now I'm not scared to face all my fears
Monstors sitting so nearby
he's leaning heavy on my back
I think he's going to attack
He slides his hands in my insides
down my organs his nails glide
He makes me feel like i'm his toy
hurting me gives him joys
I know that he's my evil curse
but things could always be much worse
he needs to have all my attention
it's not his fault he causes tention
I need to know what he desires
before all of my nerves expire
why was it that he wanted Jess
I think that I can only guess
I can't believe my lives become
a bad dream where I am numb
but theres a chance that I will wake
and hopefully no longer ache
For now the Monster stays with me
and I think that I must agree
he doesn't scare me anymore
even when he makes me sore
The doctor said I'm doing great
and making Monstor another mate
will help me get through this bad stage
and help me ease the nasty rage
Relapsing is never fun
but then whats done is really done
I could look back into my past
or look just forward and have a blast
I used to think that live was fantastic
but recently I thought it's just sarcastic
I don't believe Monsters sincere
but now I'm not scared to face all my fears
Tuesday, 21 September 2010
Shoem about Mogs and Me
Monstor waits till I'm sleep
then causes pain right down deep
the shocks are really sore and bad
and everytime I wake up sad
Last night my best friend texted me
she's been with me since we were wee
funny how she makes me smile
even when I'm feeling vile
She worries cause I lie to her
I don't mean to, I just prefer
for her to see whats left inside
cause sometimes I feel like Jess has died
If anyone knows how I feel
it would be her, she makes me deal
for all the things throughout our lives
shes always promised we'd survive
There is a show, its called 'Still game'
were we're concerned i think it's tame
When we are old and look like zombies
we'll build a house like Abercrombie.
then causes pain right down deep
the shocks are really sore and bad
and everytime I wake up sad
Last night my best friend texted me
she's been with me since we were wee
funny how she makes me smile
even when I'm feeling vile
She worries cause I lie to her
I don't mean to, I just prefer
for her to see whats left inside
cause sometimes I feel like Jess has died
If anyone knows how I feel
it would be her, she makes me deal
for all the things throughout our lives
shes always promised we'd survive
There is a show, its called 'Still game'
were we're concerned i think it's tame
When we are old and look like zombies
we'll build a house like Abercrombie.
Neurologist day....
So I just wrote a big Blog entry and then my computer crashed ggggggrrrrrrrrrrrrrr and I lost it.
I was saying I have the neurologist today so here are the questions I was thinking of asking -
I was saying I have the neurologist today so here are the questions I was thinking of asking -
- How do people know type they have?
- Walking is becoming more and more difficult, is there something I can do to stop it getting worse?
- If I took the meds would I have to take them all the time or could I only take them when I am relapsing?
- What can I do to prevent the pain?
- What causes the electric shock feelings I am experiencing?
- Is there anyway to preempt where it will strike next?
- Is it true that 1 in 3 people whose legs are affected end up being severely impaired but the disease?
- You said that 40% live normal lives with MS what happens to the other 60%?
- Please can you take me on as an NHS patient?
- I would like a Lumber Puncture to just have some more evidence for myself, would you do that for me?
- When I am exhausted I get the horrible feeling I am being lazy, is that natural, it gets me down.
Monday, 20 September 2010
creeping, crawling up my back
My two legs belong to me
Monstor can I set you free
You've made me limb you made me sore
every day becomes a chore
Everyone asks 'are you better?'
waiting for that doctors letter
Feeling still I have given in
trying to find my soul within
Monstors feeling really strong
don't know where I belong
creeping, crawling up my back
tell me what caused this attack
Please please help me understand
Monster tell me your demands
What do you want, what do you need
careful or I'll smoke that weed
All I want to do is live
Careful or i won't forgive
You hurt me and I'll hurt you
Believe me Monster this is true
Monstor can I set you free
You've made me limb you made me sore
every day becomes a chore
Everyone asks 'are you better?'
waiting for that doctors letter
Feeling still I have given in
trying to find my soul within
Monstors feeling really strong
don't know where I belong
creeping, crawling up my back
tell me what caused this attack
Please please help me understand
Monster tell me your demands
What do you want, what do you need
careful or I'll smoke that weed
All I want to do is live
Careful or i won't forgive
You hurt me and I'll hurt you
Believe me Monster this is true
Monsters being a little creep
Feeling tired feeling sore
Oh my God I'm such a bore
Feeling tragic and pathetic
someone give me anesthetic
drowning in my own self pity
tucked away in this big city
Woe is you and woe is me
much worse happens out at sea
honest now I'm doing fine
Monster can not have whats mine
I'll make him walk on his own
i know he's scared of being alone
Like a child he wants to play
Doesn't realise it goes both ways
Try to teach him to be good
So he isn't so mis-understood
Think Ibiza, I'll have to skip
was looking forward to my trip
These things happen to us all
It's ok, I'll just go see Paul
One door opens one door shuts
Jess will not be in a rut
Life is far too damn exciting
at least I'll always have my writing
Bye for now I have to go
Later on the physio
Monsters being a little creep
So I am going off to sleep.
Oh my God I'm such a bore
Feeling tragic and pathetic
someone give me anesthetic
drowning in my own self pity
tucked away in this big city
Woe is you and woe is me
much worse happens out at sea
honest now I'm doing fine
Monster can not have whats mine
I'll make him walk on his own
i know he's scared of being alone
Like a child he wants to play
Doesn't realise it goes both ways
Try to teach him to be good
So he isn't so mis-understood
Think Ibiza, I'll have to skip
was looking forward to my trip
These things happen to us all
It's ok, I'll just go see Paul
One door opens one door shuts
Jess will not be in a rut
Life is far too damn exciting
at least I'll always have my writing
Bye for now I have to go
Later on the physio
Monsters being a little creep
So I am going off to sleep.
Giving into the Monster....don’t worry just for today.
Giving into the Monster....don’t worry just for today.
So I am on the train heading back to London, feeling a little down but hopefully this will pass soon enough. I feel like I have no concentration, I can’t remember things I know I know. Anyway today is not going to be a whingy day at all, promise. I texted my boss and he is so good to me, none of this seems to faze him, he is really understanding and supportive, I like him a lot.
So today I am giving into the Monster, I don’t seem to be able to control him at the moment and I feel as if he is running riot in me so I am surrendering today, I am going to get home and attempt to sleep it off. My Dad gave me a walking stick to aid me walking and it is actually helping, it is early days but it is helping. I have the physio tonight so I will do everything in my power to improve my walking, I just want to be able to walk, run, skip everything most people can do. So positive mental attitude here I come. Monster you can bite me.
The reason that I thought of writing this was to allow the family and some friends to see how I am doing, to prevent them from worrying about me but lately all I seem to do is moan. I wanted to take a minute to apologise for that. I don’t mean to at all, it is not that I am trying to bleat on about how bad my life is, because my life is amazing, please don’t think for a second it isn’t. I have a slight issue with an uncontrollable Monster but as with any small child, he will learn to behave and we will live in harmony. Monster doesn’t mean to play up and it is my fault as well, my lack of discipline in the early days has made him quite persistent. All in all I have an amazing life, I have a job that I love, amazing friends, the best family I could ever wish for and of course, the Man. This silly little blog I have going here is therapeutic for me and informative for you hopefully. I am liking that my Aunts and Uncles are hopefully getting involved as well, I forget the bond that we all have sometimes, if I think of how I feel about Jasmine, Harry and Ben/Wilson (they haven’t agreed on a name yet), it is nice to know that my Aunts and Uncles have my back so to speak.
The Man has been so nice to me over the (well pretty much forever) last few days. He has been looking after me and reminding me of all the things we have done, never mind the things we haven’t yet. I get down because I think I am being lazy, I think that I should be doing things even when I feel bad. The Man reminds me that I don’t have to at all, it is ok to sometimes stay put, relax and feel better. He is also very good at tickling my back when I am in pain to relax me, it makes it hurt a lot less. To be honest sometimes when the pain is really bad and the painkillers don’t work just having that small gentle tickle, human touch, makes all the difference. I am very lucky to have the Man in my life right now, but don’t tell him, he might think that I like him. Oh, here I have to mention that the Man talks with his hands all the time, I think it is hysterical, I want to tape his hands up and see if he could hold a conversation without the hand gestures he he he! Shhhh, I know it’s cruel, but I also know how funny I’d find it.
I was thinking about looking up some courses to do, extra curricular stuff like a foreign language, jewelry making, maybe maths stuff like that. I was thinking through the winter it might be cool to set aside a night to do a course. I have always wanted to learn Spanish as I think it opens up French and Italian nicely and somewhere in my deep dark ambition I have always wanted to learn either Chinese or Japanese. So if I have the energy later I will look up those and see if I can book onto a course. It is very important for me to keep my brain as active as I can because it is my biggest fear, losing my thoughts. How tragic would life be if I could no longer babble at you or even worse...talk!
I am going to go now because I have no more inspiration to talk to you but I will be back later I imagine.
Loves Billions
J xxx
So I am on the train heading back to London, feeling a little down but hopefully this will pass soon enough. I feel like I have no concentration, I can’t remember things I know I know. Anyway today is not going to be a whingy day at all, promise. I texted my boss and he is so good to me, none of this seems to faze him, he is really understanding and supportive, I like him a lot.
So today I am giving into the Monster, I don’t seem to be able to control him at the moment and I feel as if he is running riot in me so I am surrendering today, I am going to get home and attempt to sleep it off. My Dad gave me a walking stick to aid me walking and it is actually helping, it is early days but it is helping. I have the physio tonight so I will do everything in my power to improve my walking, I just want to be able to walk, run, skip everything most people can do. So positive mental attitude here I come. Monster you can bite me.
The reason that I thought of writing this was to allow the family and some friends to see how I am doing, to prevent them from worrying about me but lately all I seem to do is moan. I wanted to take a minute to apologise for that. I don’t mean to at all, it is not that I am trying to bleat on about how bad my life is, because my life is amazing, please don’t think for a second it isn’t. I have a slight issue with an uncontrollable Monster but as with any small child, he will learn to behave and we will live in harmony. Monster doesn’t mean to play up and it is my fault as well, my lack of discipline in the early days has made him quite persistent. All in all I have an amazing life, I have a job that I love, amazing friends, the best family I could ever wish for and of course, the Man. This silly little blog I have going here is therapeutic for me and informative for you hopefully. I am liking that my Aunts and Uncles are hopefully getting involved as well, I forget the bond that we all have sometimes, if I think of how I feel about Jasmine, Harry and Ben/Wilson (they haven’t agreed on a name yet), it is nice to know that my Aunts and Uncles have my back so to speak.
The Man has been so nice to me over the (well pretty much forever) last few days. He has been looking after me and reminding me of all the things we have done, never mind the things we haven’t yet. I get down because I think I am being lazy, I think that I should be doing things even when I feel bad. The Man reminds me that I don’t have to at all, it is ok to sometimes stay put, relax and feel better. He is also very good at tickling my back when I am in pain to relax me, it makes it hurt a lot less. To be honest sometimes when the pain is really bad and the painkillers don’t work just having that small gentle tickle, human touch, makes all the difference. I am very lucky to have the Man in my life right now, but don’t tell him, he might think that I like him. Oh, here I have to mention that the Man talks with his hands all the time, I think it is hysterical, I want to tape his hands up and see if he could hold a conversation without the hand gestures he he he! Shhhh, I know it’s cruel, but I also know how funny I’d find it.
I was thinking about looking up some courses to do, extra curricular stuff like a foreign language, jewelry making, maybe maths stuff like that. I was thinking through the winter it might be cool to set aside a night to do a course. I have always wanted to learn Spanish as I think it opens up French and Italian nicely and somewhere in my deep dark ambition I have always wanted to learn either Chinese or Japanese. So if I have the energy later I will look up those and see if I can book onto a course. It is very important for me to keep my brain as active as I can because it is my biggest fear, losing my thoughts. How tragic would life be if I could no longer babble at you or even worse...talk!
I am going to go now because I have no more inspiration to talk to you but I will be back later I imagine.
Loves Billions
J xxx
Sunday, 19 September 2010
How I helped the Monster grow (shoem)
Monster, why you hurting me
does this really give you glee
do you think we’ll ever be friends
can we ever make amends
Sliding down my spine so hard
my insides feeling really scarred
feeling silly feeling down
why’d you make me feel a clown
I want to walk I want to run
I can’t believe whats done is done
Can you tell me how to cope
everyone keeps saying ‘Dope’
I wish I could go back in time
I wonder still what was my crime
will I really ever know
how I helped the Monster grow
Monsters taking over me
leaving whats left in the debris
feeling like my soul inside
really has no place to hide
All I seem to do is moan
wonder if they hear my groans
Everyday I feel pathetic
Trying always to be apologetic
Tomorrow I hope things will change
hope I done feel so deranged
wish these feeling would go away
lift my spirits, stop feeling gray
Saturday, 18 September 2010
Ramblings of a girl in pain...sorry
I am sitting watching a teen slasher movie with the Man and there is definitely a distinct lack of underwear and blood, but Princess Leia is playing a college house mother hen, we’re 15minutes in and I am betting already she is the killer. I really do love Horror, thrillers and action films. I just don’t find comedies that funny at the moment, don’t know, I guess that will pass. Oh Rumur Willis is in this film (Bruce Willis’s daughter) I feel bad for her because she has her fathers jaw structure, yep that sounds superficial doesn’t it but she is a young girl trying to make it in Hollywood with a boxers jaw line.
I don’t have much inspiration today to write about, think I am a little shaken but seeing my friends wife and daughter on Friday, hearing about how he died. It is really weird to think I will never speak to him again, never hug him never tell him my diagnosis. I was meant to phone him straight after I had see the specialist but I didn’t want to worry him, was going to tell him next time I saw him. Guess I am glad I didn’t tell him as it wouldn’t have been the right time. I miss him so much. It is his funeral on Friday, it will be a very day, saying goodbye to someone as amazing as him seems unfair. This year seems to be making a few of us feel like what ever God is up there he obviously doesn’t like us right now.
So I am thinking about getting a cane to help me walk as I find it difficult and my leg hurts all the time at the moment. I keep thinking and worrying about it because if I get a cane now is that admitting defeat? I honestly don’t know what I am meant to do. I sometimes don’t feel like doing anything, I feel so tired and sore but then I start to think, am I just being lazy, am I allowing MS to become my excuse? I feel terrible at the moment and I just don’t know how to cope with it. I never want to be a whingy person (yeah I know folks but your my family...should have noticed the no return policy huh!) or someone who doesn’t do anything because they have an illness. I don’t want to be defined and known because of my MS but all I feel at the moment is the affects of it, pain, tiredness and lack of sensation spreading. I think it is wearing on my confidence at the moment.
Back to the teen slasher movie, I was wrong huh! Princess Leia got the good news, she didn’t even have a good part in the film. Boooooo! We have also watched ‘The Blind Side’ and it was brilliant, honestly it was, Sandra Bullock looking incredibly lovely and telling a moving true story. It was brilliant and yes I think she deserved an oscar for her performance and would definitely recommend it. Yep and now we are watching another ridiculous teen slasher movie.
I am loving that the Man is working on our yellow brick road now as well, he is doing the geeky side (technical bad assery, as the Man would like to refer to it) of it with me, teach me stuff as we go along. I think thats why I love spending so much time with him, he definitely inspires me to learn and he is always willing to help me out. We are going to learn Perl together and do so Ruby learning as well, you will see on the yellow brick road.
We are still down at my folks, I decided to stay down tonight and I might not go to work tomorrow. I feel like every second is a struggle at the moment, every time I move it is painful, I can’t concentrate, I feel on the verge of feeling queasy. Going to stop there cause I am just moaning now. I shall go and enjoy some time with my folks.
Loves
J
Home again, home again
Guess where I am folks...yep, you got it, on the Southern Train Express to home. Weird thing is this time my wee Mummy and Daddy will not be there, neither will my baby boy puppy. They have gone down to Cornwall to see Nan, its her birthday this weekend (I think), shut up, I got her a card and some photos of the fam printed so I am up there in the ‘Neily Boy’ league of favourites.
I had a shitty day today and if you read my last poem (think I might start referring to them as shoems, it stands for ‘shit poems’; please excuse my profanity but my Mummy taughted me to use those words) you will possibly understand. The Monster and I have not had a good time today. He woken me last night with an excruciating shock pain, it felt like he had grabbed hold of the bottom of my ribs and swung his feet into my organs, into my stomach, kidneys, bits I don’t know the name of and into my lungs finishing at my throat, shoving them all together in one massive jolt. Now you might think it is silly me describing my pain like this but that is actually what it feels like, it hurts the bottom of my ribs and all my insides, in one massive electric shock feeling. Anyway, enough of the whinging and the woe is me stuff, oh and the swearing (sorry Daddy, Mummy taughted me, promise).
I have been watching House the TV series with Hugh Laurie in it, WOW! Who knew Hugh Laurie was that hot all those years ago huh! Anyway if you haven’t seen it I strongly recommend it, it is an American series set in a hospital and I love it. At the moment though I have noticed that they suspect a lot of their patients of having MS and then find out it is something even more horrible until today (gonna start a new sentence this is that epic). So they were desperately trying to work out what was wrong with their patient and they decided it was MS, they told him and there were tears and panic and all that malarkey and then they discovered a brain tumor and wait for it, ‘THEY SAID THIS WAS A POSITIVE, AT LEAST IT WASN’T MS’. You can imagine my horror, better to have a brain tumor than MS...you MUPPET! Then they explained that at least it was operable and that he would be fine afterwards. So after fighting all day with Monster I then watch that. I would use bad words again to explain how I am feeling but I will refrain because...well cause my Dad might read this and give me into trouble.
I worked from home today and I must admit I answer a couple of emails and then had to sleep. I think I was slightly over ambitious yesterday, work, laser appointment, portrait gallery, sit in Hyde Park Corner, Massage, walk to Green Park and cinema. Thing that is more than most well people would do and I was feeling pretty bad yesterday as well. Silly me, I think I try to over compensate for not being able to do things by trying to do things all at once. I think I get it in my head that I need to do things all at once to prove that I am not dead yet, silly thing it means the next day I wish I was dead. I know this may sound like I am retarded and by thinking that you are wrong, I am a degenerate spastic, and don’t you forget it. I know I will make mistakes and try and do too much and suffer but I guess like anything you have to feel the pain of it before you learn not to do it. Shhh, I know, but I am a slow learner.
For the fun of it I a tempted to ask the Man to write a paragraph here on my blog, along with my Mum and Dad and any other victims I might find. I think that this could be an experience for both them, anyone who happens to read this and also me. I can talk to you for hours but then again I have been doing it my whole life so why shouldn’t I now but I would really like some other input in these crazy technological pages I write nowadays. Over time I have asked various people to write within the pages of my diary and now when I look back it sometimes makes me remember a special time and that is better than any gift anyone could ever give you.
So I am on call this weekend and there is a planned BT outage which means on Sunday morning I have to get up and turn on the system again, rude huh! Also I have already lost confidence in the team that call me as they could not understand to call me on my mobile and not the work mobile as it is not diverted to me. DOH! Could be a weekend of useless calls for no reason at all. Then again it could mean that they don’t call at all because they have not worked out they need to call my number. Both are possibilities!
Right guess I should sign out for now, just coming into Fratton so will be off in a minute. I will attempt to keep the Monster under control tonight, fingers crossed.
So from Me, Monster and Southern Trains
Goodnight.
I had a shitty day today and if you read my last poem (think I might start referring to them as shoems, it stands for ‘shit poems’; please excuse my profanity but my Mummy taughted me to use those words) you will possibly understand. The Monster and I have not had a good time today. He woken me last night with an excruciating shock pain, it felt like he had grabbed hold of the bottom of my ribs and swung his feet into my organs, into my stomach, kidneys, bits I don’t know the name of and into my lungs finishing at my throat, shoving them all together in one massive jolt. Now you might think it is silly me describing my pain like this but that is actually what it feels like, it hurts the bottom of my ribs and all my insides, in one massive electric shock feeling. Anyway, enough of the whinging and the woe is me stuff, oh and the swearing (sorry Daddy, Mummy taughted me, promise).
I have been watching House the TV series with Hugh Laurie in it, WOW! Who knew Hugh Laurie was that hot all those years ago huh! Anyway if you haven’t seen it I strongly recommend it, it is an American series set in a hospital and I love it. At the moment though I have noticed that they suspect a lot of their patients of having MS and then find out it is something even more horrible until today (gonna start a new sentence this is that epic). So they were desperately trying to work out what was wrong with their patient and they decided it was MS, they told him and there were tears and panic and all that malarkey and then they discovered a brain tumor and wait for it, ‘THEY SAID THIS WAS A POSITIVE, AT LEAST IT WASN’T MS’. You can imagine my horror, better to have a brain tumor than MS...you MUPPET! Then they explained that at least it was operable and that he would be fine afterwards. So after fighting all day with Monster I then watch that. I would use bad words again to explain how I am feeling but I will refrain because...well cause my Dad might read this and give me into trouble.
I worked from home today and I must admit I answer a couple of emails and then had to sleep. I think I was slightly over ambitious yesterday, work, laser appointment, portrait gallery, sit in Hyde Park Corner, Massage, walk to Green Park and cinema. Thing that is more than most well people would do and I was feeling pretty bad yesterday as well. Silly me, I think I try to over compensate for not being able to do things by trying to do things all at once. I think I get it in my head that I need to do things all at once to prove that I am not dead yet, silly thing it means the next day I wish I was dead. I know this may sound like I am retarded and by thinking that you are wrong, I am a degenerate spastic, and don’t you forget it. I know I will make mistakes and try and do too much and suffer but I guess like anything you have to feel the pain of it before you learn not to do it. Shhh, I know, but I am a slow learner.
For the fun of it I a tempted to ask the Man to write a paragraph here on my blog, along with my Mum and Dad and any other victims I might find. I think that this could be an experience for both them, anyone who happens to read this and also me. I can talk to you for hours but then again I have been doing it my whole life so why shouldn’t I now but I would really like some other input in these crazy technological pages I write nowadays. Over time I have asked various people to write within the pages of my diary and now when I look back it sometimes makes me remember a special time and that is better than any gift anyone could ever give you.
So I am on call this weekend and there is a planned BT outage which means on Sunday morning I have to get up and turn on the system again, rude huh! Also I have already lost confidence in the team that call me as they could not understand to call me on my mobile and not the work mobile as it is not diverted to me. DOH! Could be a weekend of useless calls for no reason at all. Then again it could mean that they don’t call at all because they have not worked out they need to call my number. Both are possibilities!
Right guess I should sign out for now, just coming into Fratton so will be off in a minute. I will attempt to keep the Monster under control tonight, fingers crossed.
So from Me, Monster and Southern Trains
Goodnight.
Friday, 17 September 2010
In Pain and feeling down...sorry folks!
Monster, Monsters hurting me
why you on this painful spree
tearing up my insides
don't know where I can hide
Feeling tired all the time
funny this should be my prime
I wish I got the reason why
or had an answer on standby
feeling like I'm being depressive
Monsters getting more possessive
Don't know how to bare this pain
Every minute is a strain
Fall asleep and try to dream
waken quick trying not to scream
startled by another shock
my confidence feels another knock
I know that this will not last
one day it will be in the past
the futures so uncertain though
hope the Monster learns to slow
'Chin up' they will say
other tell me they will pray
All this love and hope they show
I hope to God they never know
I can't find that girl inside
to myself I think I've lied
For all the changes I might make
doesn't make me not a fake
Being the girl thats so upbeat
everyday I feel a cheat
feeling like I want to cry
guess I must carry on this lie
Feeling like I don't deserve
All these problems caused by some nerves
Hope they know I'm not ungrateful
Promise it's not that I'm hateful
The Monster really is my curse
Everyday I'm feeling worse
All the time feeling weaker
Yes, I know I'll hear the speaker
Telling me that this will pass
Reminding me not to be ass
But this pain is here to stay
doesn't matter what they say
why you on this painful spree
tearing up my insides
don't know where I can hide
Feeling tired all the time
funny this should be my prime
I wish I got the reason why
or had an answer on standby
feeling like I'm being depressive
Monsters getting more possessive
Don't know how to bare this pain
Every minute is a strain
Fall asleep and try to dream
waken quick trying not to scream
startled by another shock
my confidence feels another knock
I know that this will not last
one day it will be in the past
the futures so uncertain though
hope the Monster learns to slow
'Chin up' they will say
other tell me they will pray
All this love and hope they show
I hope to God they never know
I can't find that girl inside
to myself I think I've lied
For all the changes I might make
doesn't make me not a fake
Being the girl thats so upbeat
everyday I feel a cheat
feeling like I want to cry
guess I must carry on this lie
Feeling like I don't deserve
All these problems caused by some nerves
Hope they know I'm not ungrateful
Promise it's not that I'm hateful
The Monster really is my curse
Everyday I'm feeling worse
All the time feeling weaker
Yes, I know I'll hear the speaker
Telling me that this will pass
Reminding me not to be ass
But this pain is here to stay
doesn't matter what they say
Thursday, 16 September 2010
What day are we on today????
So my world feels upside down and topsy turvy today. I had no idea it was Friday tomorrow and got a shock when I found out. How bleeding rude huh, life racing by without giving me a nudge. I have got a skin test for a Laser treatment (x6) today so that will be a bitty scary but then later on I am going to have a massage at SenS Spa in the Hilton so that should be good. Don't tell anyone but the monster doesn't like massage or other therapies, thats why every opportunity I get I am going to get one he he he!
On look what else I achieved today, I booked -
Chiropractor – 8th October 18.30 (£150) http://www.sayerclinics.com/chiropractors-therapists/
We went to see Inception tonight and it is one of the best films I have seen in a long time. The funny thing is the rest of my day was a bit of a write off. The laser appointment went well, funny but she kept asking me if it hurt and was surprised when I said no, I swear these people get some weird enjoyment hurting you, think she was a bit upset when I admitted that I have little sensation in my left side. Then I headed to the Portrait Gallery to see the Portrait Awards and I must say I was a wee bitty disappointed, I didn't think they were as good as last year. Finally I went for a massage at the Hilton, I have to say that this was a weird experience, it was like being drowned in oil by a relatively hot eastern European girl, if I was that way inclined (sorry Mark) it possibly would have been a different experience.
So now I am going to go off to sleep thinking about all my appointments, some weird painted faces, folk that enjoy causing pain and being drowned in oil whilst having my dreams stolen. Think this could be an interesting night.
Love to you all
xxxxxxxx
On look what else I achieved today, I booked -
Dr Elrington (Neurologist) – Tuesday 21st September 16.30
Dr Burlein (GP) – Friday 24th September 17.10
Podiatrist – 4th October 18.30 (£39) http://www.rj1.co.uk/
We went to see Inception tonight and it is one of the best films I have seen in a long time. The funny thing is the rest of my day was a bit of a write off. The laser appointment went well, funny but she kept asking me if it hurt and was surprised when I said no, I swear these people get some weird enjoyment hurting you, think she was a bit upset when I admitted that I have little sensation in my left side. Then I headed to the Portrait Gallery to see the Portrait Awards and I must say I was a wee bitty disappointed, I didn't think they were as good as last year. Finally I went for a massage at the Hilton, I have to say that this was a weird experience, it was like being drowned in oil by a relatively hot eastern European girl, if I was that way inclined (sorry Mark) it possibly would have been a different experience.
So now I am going to go off to sleep thinking about all my appointments, some weird painted faces, folk that enjoy causing pain and being drowned in oil whilst having my dreams stolen. Think this could be an interesting night.
Love to you all
xxxxxxxx
Wednesday, 15 September 2010
The Monster and Me
OUr Yellow Brick Road
Now that my life has slowed
Is a comfort to me
and makes me feel free
sometimes when I'm down
and drowning in frowns
I try to rememeber
all this adventure
They said find a place
where the monster can't chase
I've found a new trick
with in each small brick
All the things we have planned
will help me to stand
It will make me walk tall
and the Monster will crawl
Monster has a hold
but now I feel bold
He will learn to behave
cause I won't be his slave
He slides down my spine
but I will be fine
he is only a child
and still wants to be wild
He feels so rejected
when he isn't respected
He will cause me pain
and scar up my brain
So I'll learn to forgive
and together we'll live
the Monster and me
I promise you'll see!
Now that my life has slowed
Is a comfort to me
and makes me feel free
sometimes when I'm down
and drowning in frowns
I try to rememeber
all this adventure
They said find a place
where the monster can't chase
I've found a new trick
with in each small brick
All the things we have planned
will help me to stand
It will make me walk tall
and the Monster will crawl
Monster has a hold
but now I feel bold
He will learn to behave
cause I won't be his slave
He slides down my spine
but I will be fine
he is only a child
and still wants to be wild
He feels so rejected
when he isn't respected
He will cause me pain
and scar up my brain
So I'll learn to forgive
and together we'll live
the Monster and me
I promise you'll see!
Quote of the Day
So I have been up all night working and this is my quote for the day -
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, Fag in one hand, bottle of vodka in the other, body thoroughly used up, totally worn out and screaming "WOO HOO what a ride!"
xxxx
"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, Fag in one hand, bottle of vodka in the other, body thoroughly used up, totally worn out and screaming "WOO HOO what a ride!"
xxxx
Tuesday, 14 September 2010
The Monster
I thought it was only fair to give you some kind of idea how I envision 'The Monster' I don't think that he as horrible as you might imagine. I think he is about as tall as my leg and is constantly walking beside me and at the moment kicks my leg to make it hurt. I kind of see him as a child, a naughty child that tries to demand attention. I guess have decided that this whole adventure is better shared with something that I can teach, also I can learn to respect its needs.
I have been getting these horrible shock sensations that feel like it has jumped on my back, put its hands through my body and grabs a hold of my insides, jamming them together, (it is like an electric shock feeling). It has knocked me over before, if it touches my kidney's or bladder it tends to be incredibly painful.
The other things my naughty Monster does is it makes my spine feel like the inside of it is grazed. It feels like it has jumped on my back shoved his grotty little hands around my spine and slide down, grazing it with its nails. Pleasant this is not but I am just going to have to teach him this is bad behaviour and it shall not be tolerated.
So I am once again on the train and we are heading back to London, which to be honest doesn’t exactly make me happy about it because I have to work all night tonight. It is the over night release (new code being deployed) this means I have to stay up all night and then at about 4am I have to do some smoke testing which, may sound exciting but it really isn’t. Lucky for me one of the new starts is coming in to learn from me, or should I say...learn my bad bad habits he he he!
So last night we went to see Amy Studt with my folks - http://www.youtube.com/watch?v=wpBZ47nhQw8 she was absolutely amazing as ever and I bought 2 of her albums from her. She used to be very over produced and very poppy but she isn’t at all today, every time I see her she seems to be finding more and more of herself. It is the first music thing I have really been to with my folks and I think they really enjoyed it. Might even be able to convince them to come to more things with me.
On that note I am going to have to mention something, I think that as I get older and see the world differently I know exactly who it is that I want to hang out with. I am a strong believer that (in theory) you should get on with your friends, friends because you chose them for a reason, that reason should be similar to why they chose you and others. I know that this may sound confusing but if you decipher it, I promise it makes sense. Further to this, the reason that you like people, get on with them and want to spend time with them should be because they are similar to you in ways, similar likes and dislikes and all that jazz. I personally can’t think of any other group of people that I have more things in common with than my family. What I mean is I adore the time I get to hang out with my parents because I am like them, I love hanging out with my Bro’s because again we have stuff in common and we get on, my sister in laws were chosen by my Bro’s so it stands to reason that I would get on with them too (lucky cause I absolutely, 100% love them to pieces), I think you can get where I am going with this. Mogs started going out with Andy and now I see them as a pair, I enjoy my time just with her just as much when he is there and sometime more because he brings something into our friendship (he makes her very happy so that definitely works in his favour).
My quote the other day was quite true, that you can only understand life looking backwards but you have to live forwards. I would like this blog to be about both, looking back on the good bits whilst trying to understand the bits now. I think that as I like writing and have always kept a diary it is the easiest way of me sharing things with both those that I love and to others that might stumble across my crazy page. I think it is important when dealing with things to include your family and friends because they are the best support network that you will ever have. They are the ones that have nursed you through life this far, why would they stop now. I don’t want to be someone who allows the Monster to take over my life, I have far too much I want to do so I would like this to be a project that possibly one day I might even be able to muster into a book. For this reason you won’t log on here and find me (hopefully you won’t I should say) telling you the day in day out shiz of my life, you with get to read the crazy thoughts that enter my head and the things that make me smile. Unfortunately I will have to tell you about the Monster because as you can tell from the title it is an account from us both.
Ahh, here is a little story from my new found I.T life, Mac v’s Windows. Now I am at he moment using the Man’s Mac and to be far it is nice to type on, the applications are nice and it is quick to get around in, also the graphics are really good but is it worth £1500 roughly? Luckily for me my boss is going to give me the use of a Mac Book Pro once my Team Lead has finished with it (in the next few months) so that will be a good way of test driving my own, then I might start myself a ‘Mac Fund’ and aim for buying one at the end of 2011. I dislike the way people in the I.T community are so snobby about people who use Windows, WAKE UP YOU IDIOTS MOST OF THE WORLD USES WINDOWS, regardless of how great Mac’s are folk should accept people and the tools that they use. The Man has just voiced up and said the word is humility people who used Mac’s should have some humility. Had to tell you that came from him because you would know that it didn’t come from me he he he!
There is a couple in their late 60/70’s sitting in front of me right now and my goodness they are finding every possible negative in the world. They appear to be on a day out and you would think they were going to visit bleeding hell. They are very well dressed and poshly spoken...think being on a train seems ‘below them’. I feel sorry for them because they will probably never see the small things in life, never see the beauty in this mixed up world we all are forced to co-exisit in.
We have just read a great quote ‘I’m smart enough to know what I don’t know, Realistic enough to know that is no excuse, Humble enough to ask and Connected enough to get it’. I think that is brilliant quote and I think I am going to print it off and stick it up on our board at work. I often think of doing a quote of a day so that I can stick affirmations in as well, not sure how it would fly though. Something I will have to consider and today is just to day to do it. I think that I will probably going to bug you a wee bit later with my findings, just cause I know that it will make you happy he he he!
So last night we went to see Amy Studt with my folks - http://www.youtube.com/watch?v=wpBZ47nhQw8 she was absolutely amazing as ever and I bought 2 of her albums from her. She used to be very over produced and very poppy but she isn’t at all today, every time I see her she seems to be finding more and more of herself. It is the first music thing I have really been to with my folks and I think they really enjoyed it. Might even be able to convince them to come to more things with me.
On that note I am going to have to mention something, I think that as I get older and see the world differently I know exactly who it is that I want to hang out with. I am a strong believer that (in theory) you should get on with your friends, friends because you chose them for a reason, that reason should be similar to why they chose you and others. I know that this may sound confusing but if you decipher it, I promise it makes sense. Further to this, the reason that you like people, get on with them and want to spend time with them should be because they are similar to you in ways, similar likes and dislikes and all that jazz. I personally can’t think of any other group of people that I have more things in common with than my family. What I mean is I adore the time I get to hang out with my parents because I am like them, I love hanging out with my Bro’s because again we have stuff in common and we get on, my sister in laws were chosen by my Bro’s so it stands to reason that I would get on with them too (lucky cause I absolutely, 100% love them to pieces), I think you can get where I am going with this. Mogs started going out with Andy and now I see them as a pair, I enjoy my time just with her just as much when he is there and sometime more because he brings something into our friendship (he makes her very happy so that definitely works in his favour).
My quote the other day was quite true, that you can only understand life looking backwards but you have to live forwards. I would like this blog to be about both, looking back on the good bits whilst trying to understand the bits now. I think that as I like writing and have always kept a diary it is the easiest way of me sharing things with both those that I love and to others that might stumble across my crazy page. I think it is important when dealing with things to include your family and friends because they are the best support network that you will ever have. They are the ones that have nursed you through life this far, why would they stop now. I don’t want to be someone who allows the Monster to take over my life, I have far too much I want to do so I would like this to be a project that possibly one day I might even be able to muster into a book. For this reason you won’t log on here and find me (hopefully you won’t I should say) telling you the day in day out shiz of my life, you with get to read the crazy thoughts that enter my head and the things that make me smile. Unfortunately I will have to tell you about the Monster because as you can tell from the title it is an account from us both.
Ahh, here is a little story from my new found I.T life, Mac v’s Windows. Now I am at he moment using the Man’s Mac and to be far it is nice to type on, the applications are nice and it is quick to get around in, also the graphics are really good but is it worth £1500 roughly? Luckily for me my boss is going to give me the use of a Mac Book Pro once my Team Lead has finished with it (in the next few months) so that will be a good way of test driving my own, then I might start myself a ‘Mac Fund’ and aim for buying one at the end of 2011. I dislike the way people in the I.T community are so snobby about people who use Windows, WAKE UP YOU IDIOTS MOST OF THE WORLD USES WINDOWS, regardless of how great Mac’s are folk should accept people and the tools that they use. The Man has just voiced up and said the word is humility people who used Mac’s should have some humility. Had to tell you that came from him because you would know that it didn’t come from me he he he!
There is a couple in their late 60/70’s sitting in front of me right now and my goodness they are finding every possible negative in the world. They appear to be on a day out and you would think they were going to visit bleeding hell. They are very well dressed and poshly spoken...think being on a train seems ‘below them’. I feel sorry for them because they will probably never see the small things in life, never see the beauty in this mixed up world we all are forced to co-exisit in.
We have just read a great quote ‘I’m smart enough to know what I don’t know, Realistic enough to know that is no excuse, Humble enough to ask and Connected enough to get it’. I think that is brilliant quote and I think I am going to print it off and stick it up on our board at work. I often think of doing a quote of a day so that I can stick affirmations in as well, not sure how it would fly though. Something I will have to consider and today is just to day to do it. I think that I will probably going to bug you a wee bit later with my findings, just cause I know that it will make you happy he he he!
Monday Monday continued
So I should possibly explain something about the Man, no matter how hard you attempt to make him be ready for a certain time it is near on impossible. Today we had a train to catch (which I am on by the way) and I gave him a count down.....15 mins, 13mins.....10mins and still he managed to safe a bit of faffing up for last minute, although today was one of his better days. I do think that it is amusing though, faffasaurous I like to call him.
We are off to Petersfield tonight to watch Amy Studt, I have seen her before and she is really good, I will attempt to add some links for those of you who are unfamiliar. I will also try and take some pic’s of this latest adventure. Oh that leads me onto telling you about our yellow brick road, now this was not entirely my idea, when I say entirely I mean not at all because my big Bro and Sis in law had already come up with the idea years ago but I thought I would implement it into the Man and I friendship. What we did was when we were sitting outside a bar in Amsterdam was started a list of all the things that we want to do in life, now this ranges from visiting the moon to going for dinner somewhere, ahhhhhh, dinner on the moon, now that would be an adventure. Nah, but seriously it has all sorts on there. I made a book whilst he was away in South Africa (Cape Town) to be exact and it has an actual yellow brick (yellow card cut up into brick shapes) road, with all the things that we want to do. I also got some photos printed and stuck them in so that it is kind of like a scrap book. I have just had a thought I am going to put my yellow brick road onto here as well, I will link it in and you can all see it as well.
Umm, what other nonsense can I bug your brains with just now....see I am stuck on a train with you, the Man (who is texting on his phone) and some Twiglets (yum) so there is really nothing left to do but talk to you. Work was ok today, I was so excited that my bouncy leg appeared, isn’t it sexy huh! I can walk like a normal person now, well a little less spazzy anyway, don’t tell me off Mum, I have a letter that says I can use that word from a Specialist so there! Oh when I say less spazzy that doesn’t include stairs, neither or up nor down I shall go gracefully, I look like a troll with a clubbed foot, but hey there are weirdo’s out there that will still think I am hot, I have read about them.
I can’t get my friend out of my head at the moment, I know it would annoy him that his death was causing such an emotional roller-coaster, but I can’t help it. It still feels like there is a hole in the world. Oh and my bad I emailed my ex the other night (after a few glasses of wine and a cry about my friend) and told him to stop trying to ‘ooze’ back into my families life. Feel a bit bad about it because none of these latest events are his fault and I think I am doing the whole transference thing and making it his fault when it has nothing to do with him. I am thinking of apologising but then I did wish him and his wife all the best for the future so it was a bit of a mixed bag really, ‘stop oozing’ but ‘wish you all the best’ if I was him I’d be confused. Lesson to one self ‘never drink and dial/mail/speak or think’.
I don’t know whether I have mentioned but I am going to Ibiza in a couple of weeks. I think that me and the Monster are going to have to learn in the next 2 weeks to agree on our drinking behaviour. I will be careful on the condition that it sods off for a few days, I am going on holiday so I expect it to make its own plans. I am not inviting it or buying it a ticket into Pasha or anywhere else I may go so it will have to stay at home. I know that the charming being that it is, the Monster may have trouble dealing with this arrangement but I will make damn sure that it does not in anyway interfere with my time away as I am only there for 3 days. It tried to ruin one holiday this year I will not allow it to try and ruin this one. Saying I will stick a rocket it in its arse may not be advisable as it might hurt me but I will get massages, acupuncture, oxygen tank malarkey, de-tox, yoga the hell out of myself and if that doesn’t work I will Cryogenically freeze myself till they find a cure.
Oh I know someone in my family thought that it was a great idea to make me a ‘God Mother’, to my unborn nephew in America he he he! Now this gives me a great excuse to make ‘Harry’ believe I am a Fairy God Mother, oh yes, his parents used to live by Disney and my idea is to tell him that I befriended them on one of their visits to the Disney Castle. I figured that buying some poofy dresses for my visits and glitter won’t be that tough. Also if it doesn’t work out he will at least learn that I am just slightly crazy. See I knew I loved kids. In all seriousness this was the best news ever and if I make it into the church without bursting into flames it will be the biggest honor of my wee life. The Man just suggested flame resistant clothes, now I am pondering whether he means for me or him.
We are off to Petersfield tonight to watch Amy Studt, I have seen her before and she is really good, I will attempt to add some links for those of you who are unfamiliar. I will also try and take some pic’s of this latest adventure. Oh that leads me onto telling you about our yellow brick road, now this was not entirely my idea, when I say entirely I mean not at all because my big Bro and Sis in law had already come up with the idea years ago but I thought I would implement it into the Man and I friendship. What we did was when we were sitting outside a bar in Amsterdam was started a list of all the things that we want to do in life, now this ranges from visiting the moon to going for dinner somewhere, ahhhhhh, dinner on the moon, now that would be an adventure. Nah, but seriously it has all sorts on there. I made a book whilst he was away in South Africa (Cape Town) to be exact and it has an actual yellow brick (yellow card cut up into brick shapes) road, with all the things that we want to do. I also got some photos printed and stuck them in so that it is kind of like a scrap book. I have just had a thought I am going to put my yellow brick road onto here as well, I will link it in and you can all see it as well.
Umm, what other nonsense can I bug your brains with just now....see I am stuck on a train with you, the Man (who is texting on his phone) and some Twiglets (yum) so there is really nothing left to do but talk to you. Work was ok today, I was so excited that my bouncy leg appeared, isn’t it sexy huh! I can walk like a normal person now, well a little less spazzy anyway, don’t tell me off Mum, I have a letter that says I can use that word from a Specialist so there! Oh when I say less spazzy that doesn’t include stairs, neither or up nor down I shall go gracefully, I look like a troll with a clubbed foot, but hey there are weirdo’s out there that will still think I am hot, I have read about them.
I can’t get my friend out of my head at the moment, I know it would annoy him that his death was causing such an emotional roller-coaster, but I can’t help it. It still feels like there is a hole in the world. Oh and my bad I emailed my ex the other night (after a few glasses of wine and a cry about my friend) and told him to stop trying to ‘ooze’ back into my families life. Feel a bit bad about it because none of these latest events are his fault and I think I am doing the whole transference thing and making it his fault when it has nothing to do with him. I am thinking of apologising but then I did wish him and his wife all the best for the future so it was a bit of a mixed bag really, ‘stop oozing’ but ‘wish you all the best’ if I was him I’d be confused. Lesson to one self ‘never drink and dial/mail/speak or think’.
I don’t know whether I have mentioned but I am going to Ibiza in a couple of weeks. I think that me and the Monster are going to have to learn in the next 2 weeks to agree on our drinking behaviour. I will be careful on the condition that it sods off for a few days, I am going on holiday so I expect it to make its own plans. I am not inviting it or buying it a ticket into Pasha or anywhere else I may go so it will have to stay at home. I know that the charming being that it is, the Monster may have trouble dealing with this arrangement but I will make damn sure that it does not in anyway interfere with my time away as I am only there for 3 days. It tried to ruin one holiday this year I will not allow it to try and ruin this one. Saying I will stick a rocket it in its arse may not be advisable as it might hurt me but I will get massages, acupuncture, oxygen tank malarkey, de-tox, yoga the hell out of myself and if that doesn’t work I will Cryogenically freeze myself till they find a cure.
Oh I know someone in my family thought that it was a great idea to make me a ‘God Mother’, to my unborn nephew in America he he he! Now this gives me a great excuse to make ‘Harry’ believe I am a Fairy God Mother, oh yes, his parents used to live by Disney and my idea is to tell him that I befriended them on one of their visits to the Disney Castle. I figured that buying some poofy dresses for my visits and glitter won’t be that tough. Also if it doesn’t work out he will at least learn that I am just slightly crazy. See I knew I loved kids. In all seriousness this was the best news ever and if I make it into the church without bursting into flames it will be the biggest honor of my wee life. The Man just suggested flame resistant clothes, now I am pondering whether he means for me or him.
Monday, 13 September 2010
Monday Monday.........
.......... so good to me,
Monday Monday, it was all I hoped it would be
Oh Monday morning, Monday morning couldn't guarantee
That Monday evening you would still be here with me.
So this week is going to be remarkably better than last week. For a start I am headed to a gig tonight with the Man and my folks, awesome!
Look what arrived today, my bouncy leg to help me walk :) I am so happy, I have got it on just now and it is making such a difference.
Monday Monday, it was all I hoped it would be
Oh Monday morning, Monday morning couldn't guarantee
That Monday evening you would still be here with me.
So this week is going to be remarkably better than last week. For a start I am headed to a gig tonight with the Man and my folks, awesome!
Look what arrived today, my bouncy leg to help me walk :) I am so happy, I have got it on just now and it is making such a difference.
Meet Sonny
Sunday, 12 September 2010
Cruel Intentions
So I have been battling with what I actually believe today, can life really think that it is funny causing all these things to happen at once? Then I decided to write a list of the things I am gratetful for so here we go..
- Amazing Parents
- Best Brothers I could ever wish for
- Sister in Laws that I adore and love
- My beauitful baby girl niece, I adore her
- My troublesome nephews that have yet to entire this world (due in October)
- Unbelievable Grandparents
- of course my Toby Tigger
- The most wonderful extended family
- Mogs, bestest friend in the world
- Neil - might not see each other enough but an amazing friend in every way
- The Man, ranking high I know, but he inspires me, puts up with me and most import makes me laugh.
- All my other friends, they know who they are and they know how important they are
- My Job, I love everyday I make it into the office
- Learning new things
- Travelling to anywhere inside and out of Britain
- Clouds, I love clouds
- I love the word Aubergine, don't ask just do
- I love that I have M.S rather than anyone else I know, wouldn't wish it on anyone (well maybe one person but that you just be karma....I meant mean)
- I love smiling at stranger on the tube when it makes them smile back.
- I like all different films
- I like swimming, such a great place to forget the world
- I love Summer Rain, getting soaked but not feeling cold
- I love my tattoo's
- I love the days that the pain subsides.
- I love that I have my whole life infront of me (he he he! that is such a lie, I'm 28, meaning it is not 'my whole life' or I would just be being born, Doh!)
- I love that I will still be able to do every thing I had planned to do
- I am grateful that 10 years of not knowing this one of life's secrets has made me the person I am today.
- I am grateful that my life so far has been filled with such love from the people I know (minus that person who.....shhhh, don't be mean now J, we are saying the things we love)
- I love that Jim didn't fix it and let me marry Mel Gibson, that man has issues.
- Finally, I am happy that I can write this blog and share the nonsense that is in my head.
I have had a chilled out weekend, the Man and I watched loads of films, Deadline, Paranormal Activity, The Haunting, Shrink, Unborn and Edge of Darkness. Film Fest I know but I didn't feel like facing the world at all, I really wanted to hide away and wait till the world found another victim. I hate feeling like a victim but sometimes I can't help it. I also hate being around other people in case my sad feelings are infectious and I also don't like the feeling of being a dark, dense energy (shut up, you know what I mean) so I tend to hide in my room and come down when I am feeling better.
Monster was also not being fair to me, especially this morning. It felt like someone had grazed the inside of my spine so every time I breathed or moved it was incredible painful but lying on the floor and having the Man to talk to soon made it ease off and I continued feeling sorry for myself for the remainder of the day.
If I had piece of advise to give someone going through this M.S malarkey it would be - frowning makes you frown, and will result in face ache! So even when it hurts so bad the thought of giving up breathing appeals, remember that doing so will cause you to turn blue, and then you will be in pain and look like a smurf. So lie on the floor, eat choccies, hide under your duvet do what ever you can to make yourself feel a little bit better. I am reconfirming this to myself by the way, I find when I talk these things through on here it makes me feel a bit better.
Oh gotta mention that my big bro and his fairy princess are coming to London in 2 weeks so we are going to have so much fun. I loves them billions
Signing out xxxxxxx
Night night
Friday, 10 September 2010
I hate the world today.....
You're so good to me
I know but I can't change
tried to tell you but you look at me like maybe I'm an angel
underneath
innocent and sweet
Yesterday I cried
You must have been relieved to see the softer side
I can understand how you'd be so confused
I don't envy you
I'm a little bit of everything
all rolled into one
Today have been (sorry parents) shit! One of the people I love and respected died this morning, he had been fighting (I hate that expression) cancer and finally lost today. He was one of the most geniune people I have ever met. I have known him for about 5 years and I am sad our time together was so short. Wanted to cry all day but I couldn't, sometimes I really think there is something horribly wrong with me. If anyone deserved my tears it would be him.
Yesterday my ex got in touch today my friend died, do you ever get the impression life doesn't like you very much?
I know but I can't change
tried to tell you but you look at me like maybe I'm an angel
underneath
innocent and sweet
Yesterday I cried
You must have been relieved to see the softer side
I can understand how you'd be so confused
I don't envy you
I'm a little bit of everything
all rolled into one
Today have been (sorry parents) shit! One of the people I love and respected died this morning, he had been fighting (I hate that expression) cancer and finally lost today. He was one of the most geniune people I have ever met. I have known him for about 5 years and I am sad our time together was so short. Wanted to cry all day but I couldn't, sometimes I really think there is something horribly wrong with me. If anyone deserved my tears it would be him.
Yesterday my ex got in touch today my friend died, do you ever get the impression life doesn't like you very much?
Thursday, 9 September 2010
Poem - think this one means something...don't tell him!
Today I'm feeling strange
and I know I need to change
but theres something in my way
and I'm scared what they will say
Do you think their is a god
cause I think it's kind of odd
he'd let the Monster in
will I learn to be thick skinned
I thought it was the past
now this problems feeling vast
whys life playing this game
and who will take the blame
There's someone in my life
and even though he has a wife
he's taught me to believe
now I hope he doesn't leave
It ate me up inside
no matter how I tried
now life is so much fun
all that is really done.
Me and the Monster learn
and now I'm being stern
I want this man with me
and that will make it three!
and I know I need to change
but theres something in my way
and I'm scared what they will say
Do you think their is a god
cause I think it's kind of odd
he'd let the Monster in
will I learn to be thick skinned
I thought it was the past
now this problems feeling vast
whys life playing this game
and who will take the blame
There's someone in my life
and even though he has a wife
he's taught me to believe
now I hope he doesn't leave
It ate me up inside
no matter how I tried
now life is so much fun
all that is really done.
Me and the Monster learn
and now I'm being stern
I want this man with me
and that will make it three!
Life can be only understood backwards, but it must be lived forwards.
Ok ok, so you I know I am probably killing you with my shitty poetry but it is an easy of me expressing myself so bite me!
Today I worked from home, my legs and hips were sore and I have been feeling quite tired and finding it difficult to concentrate so I thought I would take the opportunity and say put this morning. I am not a massive fan of working from home but it is great that I have the freedom to do it so I am a happy bunny :)
I found some brilliant 'words of wisdom' today, thought I would share them with you.
Anyway back to the Monster and me huh! We majorly fell out in the shower earlier because it is playing the electric pain game, hit so bad that I fell over. Hit the bottom quite hard, thought I was going to swallow the shampoo in the wrong end if you know what I mean. Lesson learnt, move shampoo's and conditioner just incase. So to get my own back I rested, laughed at myself and bought a Pink telly, that is going to make me smile more than you can imagine lol!
Weirdly life tossed me a curve ball today I found out that my ex has been in touch with my Bro trying to contact my folks. **Dad close your eyes for this bit please** I think he is a complete arsehole and couldn't think of anyone more manipulative, hope he doesn't wriggle back into my life in anyway. I wish him all the best in his new life but I definately do not want him infecting my life now. Funny that I spoke the other day of giving the monster a persona and low and behold a walking, breathing disease pops back into my life.
Anyway I should sign out now. Before I go I need to mention that the time on these posts are not real I have no idea what that is about and although I work in I.T I can't figure it out. I shall try again now.
Loves
Jxxx
Today I worked from home, my legs and hips were sore and I have been feeling quite tired and finding it difficult to concentrate so I thought I would take the opportunity and say put this morning. I am not a massive fan of working from home but it is great that I have the freedom to do it so I am a happy bunny :)
I found some brilliant 'words of wisdom' today, thought I would share them with you.
- Money can't buy everything . .but then again, neither can no money.
- People: Some make things happen, some watch things happen, and the majority has no idea what's happened.
- Optimist: Girl who regards a bulge as a curve.
- Tattoo: Permanent proof of temporary insanity.
- Magazine: Bunch of printed pages that tell you what's coming in the next issue.
- Traffic light: Apparatus that automatically turns red when your car approaches.
- I used to eat a lot of natural foods until I learned that most people die of natural causes.
- If quitters never win, and winners never quit, then who is the fool who said, "Quit while you're ahead?"
- Whenever I feel blue, I start breathing again.
- Health is merely the slowest possible rate at which one can die
- In the 60's, people took acid to make the world weird. Now the world is weird and people take Prozac to make it normal.
- Why do tourists go to the tops of tall buildings and then put money into telescopes so they can see things on the ground close-up?
- If I melt dry ice, can I take a bath without getting wet?
Anyway back to the Monster and me huh! We majorly fell out in the shower earlier because it is playing the electric pain game, hit so bad that I fell over. Hit the bottom quite hard, thought I was going to swallow the shampoo in the wrong end if you know what I mean. Lesson learnt, move shampoo's and conditioner just incase. So to get my own back I rested, laughed at myself and bought a Pink telly, that is going to make me smile more than you can imagine lol!
Weirdly life tossed me a curve ball today I found out that my ex has been in touch with my Bro trying to contact my folks. **Dad close your eyes for this bit please** I think he is a complete arsehole and couldn't think of anyone more manipulative, hope he doesn't wriggle back into my life in anyway. I wish him all the best in his new life but I definately do not want him infecting my life now. Funny that I spoke the other day of giving the monster a persona and low and behold a walking, breathing disease pops back into my life.
Anyway I should sign out now. Before I go I need to mention that the time on these posts are not real I have no idea what that is about and although I work in I.T I can't figure it out. I shall try again now.
Loves
Jxxx
Wednesday, 8 September 2010
Bad Poem but you get the idea
lifes feeling like a dream
and I really want to scream
think I'm in denial
cause the truth is really vile
all I want to do is work
cause it really is a perk
but my legs are feeling pain
and it's feeling such a strain
On the tube I will go
and even if I'm being slow
I know they'll understand
and my friends will lend a hand
Aching down my back
I'm trying not to slack
constantly uneasy
and now I'm feeling queasy
feeling so unsure
please tell me there's a cure
All I see now is a chair
and the thought that they will stare
I know I'm being bad
and it really makes me mad
I know I'm feeling down
and I hate it makes me frown
Tomorrow will be better
I think I'll write a letter
I need to shake this feeling
and start some serious dealing.
and I really want to scream
think I'm in denial
cause the truth is really vile
all I want to do is work
cause it really is a perk
but my legs are feeling pain
and it's feeling such a strain
On the tube I will go
and even if I'm being slow
I know they'll understand
and my friends will lend a hand
Aching down my back
I'm trying not to slack
constantly uneasy
and now I'm feeling queasy
feeling so unsure
please tell me there's a cure
All I see now is a chair
and the thought that they will stare
I know I'm being bad
and it really makes me mad
I know I'm feeling down
and I hate it makes me frown
Tomorrow will be better
I think I'll write a letter
I need to shake this feeling
and start some serious dealing.
Stooopid Tube Strikes Yesterday
So the Monster and I did not start the day off well yesterday, I huffed and I puffed and I nearly stayed at home but the Man suggested that we get the over ground to work, this was indeed an idea and a half. What a nice experience, while the rest of the city was huffing and puffing, walking, cycling, shoving on the tube, stressing on the buses, we had a nice doddle to work. When we got to Dalston my shoes were not staying on my feet at all :( So the man bought me some pumps that stay on nice and tight which was amazing.
Work was ok, I managed to convince my boss to send me on a Scrum Masters course which is awesome here are the details if you are at all interested - www.qa.com/training-courses/project-management-training/agile-project-management/certified-scrummaster I am hoping to be able to follow the Man's chat once I have learnt it all as well he he he! Only joking I am really interested in the course and watching one of our contractors deal with some of our issues within the team I really want to continue what he has started.
I did a fair amount of walking and it hurt a lot, when I say a fair amount of walking I mean about a quater of what I would have usually done before this had happen. That gets me down but hey I guess you win some you lose some and all that jazz.
Work was ok, I managed to convince my boss to send me on a Scrum Masters course which is awesome here are the details if you are at all interested - www.qa.com/training-courses/project-management-training/agile-project-management/certified-scrummaster I am hoping to be able to follow the Man's chat once I have learnt it all as well he he he! Only joking I am really interested in the course and watching one of our contractors deal with some of our issues within the team I really want to continue what he has started.
I did a fair amount of walking and it hurt a lot, when I say a fair amount of walking I mean about a quater of what I would have usually done before this had happen. That gets me down but hey I guess you win some you lose some and all that jazz.
Monday, 6 September 2010
Theraputic Work
Today was a good day! I got into work and was reasonably constructive, when I say reasonably I think I was so excited to be in that I might not have concentrated as much as I should have. I have 2 people that I am helping at the moment as they are both new. This responisbility has been good and bad, I really like them both but sometimes it can be mentally tiring, on the other hand it is great for my confidence cause they think I am good at all this I.T shizzzz he he he!
My friend came back from a week in South Africa as well today and brought me pressies which is always a bonus. It cracked me up that he brought me back 'Monkey Balls', I would love to know that thought process but on the other hand I like the mystery of it. 'Hmmm, what can I get Jess, hmmm, what screams Jess to me here?.....Oh I know.....Monkey Balls, of course!' he he he! Love it. He did also bring me back my favouite perfume which as you will learn it is my favourite thing ever in the world. Sod, shoes, clothes, food, chocolate, I would trade them all in for a lovely bottle of perfume. I feel naked if (on the very race occasion) I ever forget to put some on. I honestly feel like my world is ending if I don't smell nice. He he he! Screw M.S...make me smell good.
I spoke to my boss today and he has been absolutely brilliant through all this being diagnosis malarkey. I stress so much about my job, just because I do love it so much. A work day is a good day for me, what I mean is when I get into the office and get a days work done it instantly makes me feel good about myself and I get satisfaction from it. The Boss as I will refer to him, has said over and over again that I do not have to worry about work and that we will take it day by day, if I am sick one day I can work from home if I want, if I feel better I can come in to the office and if I am really bad I can stay in bed and everything will be ok. I have started my own time sheet, he told me that I really didn't have to but I want to do it for my own pride, I want to ensure that every week I am putting in my 37.5hours or more. It is all just as much about me as about work.
The man (my friend) took me out for a meal tonight and it was lovely, tell you what this eating better stuff isn't that bad, Thai Fish cakes and Rocket wow! I can do this. Everytime I eat something healthy at the moment a little demon in my head sticks his fingers up at the monster. Right now I am sitting blabbing to you and watching Frankie Boyle on the telly, he is very harsh and rude but I love him. I am just about to start reading his book, I heard the monster probably doesn't like laughter and happiness so I am thinking this might be a bit of a painful experience for it, I say GOOD, I hope all the laughter and happiness really hurts it.
So I should probably explain something here, I am referring to MS as the monster as you will have got by now as I find it easier dealing with it by making it something I can fight with. This might lead to me acting crazy and shouting at myself sometimes but hey, I am sure you will all still love me. It seems weird to have to fight something you can't see, can't really understand and causes so much bother, so I am giving it a name and I am going to find ways of hurting it just like it hurts me. Here is what I (bit of a lie that would be my mum) has found out it doesn't like -
Omega 3
Healthy very low animal fat diet
Laughter
Vitamin D
Sunshine (not heat, it likes that)
Rest
Positive Mental Attitude
Love of family and friends.
So here we go, it picked a fight and I have finally decided that I quite like a fight, it has taken the feeling from my hands and left leg, made me limb and cause so much pain, now it is my turn. I say bring it on monster cause I know how to hurt you just as bad.
Ok I am taking my crazy butt to bed and sleep now but me and the Monster will be back sometime soon and I will be updating up all again.
Loves for now
J xxxxxxx
My friend came back from a week in South Africa as well today and brought me pressies which is always a bonus. It cracked me up that he brought me back 'Monkey Balls', I would love to know that thought process but on the other hand I like the mystery of it. 'Hmmm, what can I get Jess, hmmm, what screams Jess to me here?.....Oh I know.....Monkey Balls, of course!' he he he! Love it. He did also bring me back my favouite perfume which as you will learn it is my favourite thing ever in the world. Sod, shoes, clothes, food, chocolate, I would trade them all in for a lovely bottle of perfume. I feel naked if (on the very race occasion) I ever forget to put some on. I honestly feel like my world is ending if I don't smell nice. He he he! Screw M.S...make me smell good.
I spoke to my boss today and he has been absolutely brilliant through all this being diagnosis malarkey. I stress so much about my job, just because I do love it so much. A work day is a good day for me, what I mean is when I get into the office and get a days work done it instantly makes me feel good about myself and I get satisfaction from it. The Boss as I will refer to him, has said over and over again that I do not have to worry about work and that we will take it day by day, if I am sick one day I can work from home if I want, if I feel better I can come in to the office and if I am really bad I can stay in bed and everything will be ok. I have started my own time sheet, he told me that I really didn't have to but I want to do it for my own pride, I want to ensure that every week I am putting in my 37.5hours or more. It is all just as much about me as about work.
The man (my friend) took me out for a meal tonight and it was lovely, tell you what this eating better stuff isn't that bad, Thai Fish cakes and Rocket wow! I can do this. Everytime I eat something healthy at the moment a little demon in my head sticks his fingers up at the monster. Right now I am sitting blabbing to you and watching Frankie Boyle on the telly, he is very harsh and rude but I love him. I am just about to start reading his book, I heard the monster probably doesn't like laughter and happiness so I am thinking this might be a bit of a painful experience for it, I say GOOD, I hope all the laughter and happiness really hurts it.
So I should probably explain something here, I am referring to MS as the monster as you will have got by now as I find it easier dealing with it by making it something I can fight with. This might lead to me acting crazy and shouting at myself sometimes but hey, I am sure you will all still love me. It seems weird to have to fight something you can't see, can't really understand and causes so much bother, so I am giving it a name and I am going to find ways of hurting it just like it hurts me. Here is what I (bit of a lie that would be my mum) has found out it doesn't like -
Omega 3
Healthy very low animal fat diet
Laughter
Vitamin D
Sunshine (not heat, it likes that)
Rest
Positive Mental Attitude
Love of family and friends.
So here we go, it picked a fight and I have finally decided that I quite like a fight, it has taken the feeling from my hands and left leg, made me limb and cause so much pain, now it is my turn. I say bring it on monster cause I know how to hurt you just as bad.
Ok I am taking my crazy butt to bed and sleep now but me and the Monster will be back sometime soon and I will be updating up all again.
Loves for now
J xxxxxxx
Saturday, 4 September 2010
Questions for the Neurologist
Any questions you think would be useful please add :)
- How do people know type they have?
- What can I do to prevent the pain?
- Is there anyway to preempt where it will strike next
- My hips are so painful and walking is difficult is there something I can do?
- Is it true that 1 in 3 people end up being severely impaired but the disease?
- You said that 40% live normal lives with MS what happens to the other 60%?
- Please can you take me on as an NHS patient?
- I would like a Lumber Puncture to just have some more evidence for myself, would you do that for me?
Useful Websites
Just a few websites that I have found
Shift
http://shift.ms/ms_lbb.php
MS Society
http://www.mssociety.org.uk/about_ms/index.html
Wikipedia
http://en.wikipedia.org/wiki/Multiple_sclerosis
The Multiple Sclerosis Resource Centre
http://www.msrc.co.uk/
Multiple Sclerosis Trust
http://www.mstrust.org.uk/
Shift
http://shift.ms/ms_lbb.php
MS Society
http://www.mssociety.org.uk/about_ms/index.html
Wikipedia
http://en.wikipedia.org/wiki/Multiple_sclerosis
The Multiple Sclerosis Resource Centre
http://www.msrc.co.uk/
Multiple Sclerosis Trust
http://www.mstrust.org.uk/
Poem 4
Feeling better and some more
pulling my spirit off the floor
life is clever not so kind
but then it gave me a great mind
I can over come this test
I will give it my damn best
it's a challenge I will take
bring it on and make me ache
I am stronger than you think
push me harder to the brink
I will win this silly game
even if you've left me lame
Silly world with silly rules
you think I do not have the tools
last ten years you've been with me
shame you never got my plea
How much are you ready to bet
come on give me your worst threat
bet you think I'm going to crumble
I am set to make you humble
In my brain it seems you reign
and you will do your worst to maim
really do you think your tough
cause I am sure its not enough
You may dance and cause me pain
none of this has been in vain
you have made me who I am today
but I am guessing your here to stay
This is war you've picked a fight
how dare you think you had the right
now I know your name in there
you don't have the power to scare.
pulling my spirit off the floor
life is clever not so kind
but then it gave me a great mind
I can over come this test
I will give it my damn best
it's a challenge I will take
bring it on and make me ache
I am stronger than you think
push me harder to the brink
I will win this silly game
even if you've left me lame
Silly world with silly rules
you think I do not have the tools
last ten years you've been with me
shame you never got my plea
How much are you ready to bet
come on give me your worst threat
bet you think I'm going to crumble
I am set to make you humble
In my brain it seems you reign
and you will do your worst to maim
really do you think your tough
cause I am sure its not enough
You may dance and cause me pain
none of this has been in vain
you have made me who I am today
but I am guessing your here to stay
This is war you've picked a fight
how dare you think you had the right
now I know your name in there
you don't have the power to scare.
Poem 3
Does it know of personal space
and its rude to hide its face
its suprise aren't much fun
not as if we can run
All the words the people say
why can't they make it go away
it feels so big and so strong
I wish I knew what was going on
Diet makes it slow right down
But even that mkes me frown
how much will you take
I wish this was a big mistake
Being strong and being tough
I don't know if its enough
all this fear I have inside
tell me will I lose my pride
Am I a victim of my life
does anybody know my strife
who will watch this sure descent
will they learn to resent
I hears it's unpredictable
but is it unequivical
tell me that there is some doubt
my god I think I'm going to shout
What is my crime, what have I done
All I wanted was some fun
is this really what I earned
suddenly life I'm feeling burned
Alway someone worse I know
but really life this is a blow
show your face then do your worst
finally I'll face my curse.
and its rude to hide its face
its suprise aren't much fun
not as if we can run
All the words the people say
why can't they make it go away
it feels so big and so strong
I wish I knew what was going on
Diet makes it slow right down
But even that mkes me frown
how much will you take
I wish this was a big mistake
Being strong and being tough
I don't know if its enough
all this fear I have inside
tell me will I lose my pride
Am I a victim of my life
does anybody know my strife
who will watch this sure descent
will they learn to resent
I hears it's unpredictable
but is it unequivical
tell me that there is some doubt
my god I think I'm going to shout
What is my crime, what have I done
All I wanted was some fun
is this really what I earned
suddenly life I'm feeling burned
Alway someone worse I know
but really life this is a blow
show your face then do your worst
finally I'll face my curse.
Poem 2
Multiple Sclerosis
What is this diagnosis
Some times I feel so sad
and then I'm feeling glad
For all those peoples lives
who never try to strive
I feel I have a goal
and finally found my soul
Maybe this is what was meant
with all those years I have spent
searching for the girl inside
wondering what makes her hide
To afraid to achieve
feeling like she needs to grieve
something lost and something found
always feeling as if she's bound
Chance to live, laugh and love
never thinking whats above
life has finally begun
no more reason left to run
She is found and she is here
ready to face what she fears
Must be strong and carry on
or I know what I will become.
What is this diagnosis
Some times I feel so sad
and then I'm feeling glad
For all those peoples lives
who never try to strive
I feel I have a goal
and finally found my soul
Maybe this is what was meant
with all those years I have spent
searching for the girl inside
wondering what makes her hide
To afraid to achieve
feeling like she needs to grieve
something lost and something found
always feeling as if she's bound
Chance to live, laugh and love
never thinking whats above
life has finally begun
no more reason left to run
She is found and she is here
ready to face what she fears
Must be strong and carry on
or I know what I will become.
Poem 1
**like I said before, it is bad, I know it is but please bare with me, I hope it will get better**
Poem 1
for all those days I sought
and all the nights I thought
what if they think I lied
my goodness how I cried
finally it has a name
but we don't know it's aim
funny it means scar
I think I'll find a bar
It creeps in the dark
even though it leaves no marks
and suddenly appears
it wakens all my fears
I think today, I must learn
to make the monster earn
the right to steal from me
it won't have its spree
Now every day I smile
I'll learn to walk in style
for everything it took
One day I'll write a book.
Poem 1
for all those days I sought
and all the nights I thought
what if they think I lied
my goodness how I cried
finally it has a name
but we don't know it's aim
funny it means scar
I think I'll find a bar
It creeps in the dark
even though it leaves no marks
and suddenly appears
it wakens all my fears
I think today, I must learn
to make the monster earn
the right to steal from me
it won't have its spree
Now every day I smile
I'll learn to walk in style
for everything it took
One day I'll write a book.
Starting Now
So it has been a shock and a total mixed bag since I have found out that I have Multiple Sclerosis. I felt so sorry for my Neurologist when he was telling me, he kept saying 'I'm sorry, I'm so so sorry' the only response I could think of was 'well you didn't give me MS...did you' he was telling me the worst news of my life and I think he was looking for tears. Unfortunately tears are not something I had for him and if I did it would be because I felt sorry for him, not me. I think I should explain that after not knowing for so long what was actually wrong with me, I finally had this lovely, educated, interesting man giving me an answer. He was telling me I wasn't crazy, he was telling me I wasn't a nut with Munchausens Syndrome (http://en.wikipedia.org/wiki/M%C3%BCnchausen_syndrome) which I had nearly convinced myself I had. I thought that all the things that had gone wrong with me must have been caused by me, no one can be that unlucky. Now finally I had someone telling me that there was a reason, a real cause; I felt relieved.
I think there are lots of people that initally felt like I did and its only when the dust settles can you really begin the acceptance process, which just for the record I am not through. There are many questions that I have and I am going to add them on here so if you are at all interested I would really like your input, I am sure there are going to be things I forget to ask. So this blog is so that you can all see how I am doing and understand how I am feeling, I guess the saying 'a trouble shared is a trouble halved' is something that I would like to believe.
Since finding out I have been through a few emotions and I have weirdly found that writing bad poetry has helped me express these emotions. Now I will warn you that I have not written poetry before and know nothing about it so my bad rhyming malarkey might annoy you but please bare with me, I do hope to get better.
This blog isn't to make you pity me or to pull on your heart strings it is honest and open. I am going through this and I would like to share it. There are so many people out there with a lot worse happening to them, I know a few and have already lost a few so please don't think I am bleating or moaning, I am not, I am just trying to share.
I am going to stop justifying myself now and add some bad poetry.
I think there are lots of people that initally felt like I did and its only when the dust settles can you really begin the acceptance process, which just for the record I am not through. There are many questions that I have and I am going to add them on here so if you are at all interested I would really like your input, I am sure there are going to be things I forget to ask. So this blog is so that you can all see how I am doing and understand how I am feeling, I guess the saying 'a trouble shared is a trouble halved' is something that I would like to believe.
Since finding out I have been through a few emotions and I have weirdly found that writing bad poetry has helped me express these emotions. Now I will warn you that I have not written poetry before and know nothing about it so my bad rhyming malarkey might annoy you but please bare with me, I do hope to get better.
This blog isn't to make you pity me or to pull on your heart strings it is honest and open. I am going through this and I would like to share it. There are so many people out there with a lot worse happening to them, I know a few and have already lost a few so please don't think I am bleating or moaning, I am not, I am just trying to share.
I am going to stop justifying myself now and add some bad poetry.
New Beginnings
Like I said ealier I believe that I was given a second chance but that does not mean to say that I was not fighting against what I thought was M.E most of the time.
I should mention that I too have other demons that I had to deal with as I believe I also have a drink problem. Well to be honest I don't have a problem with drink, I just like it so damn much that I tend to search for the answers at the bottom of a bottle before anywhere and guess what....I never find it there. Guess it comes from a whole heep of shitty decisions when I was younger.
Actually can I just say here that I truely believe that everything that has happened to me through out my life, I caused. Someone very wise tells me that we make our own reality and I believe that whole heartedly. Everything that has ever happened to me is due to my self destructive streak and my inability to deal with things properly. So all this I am telling you is not to try and make you pity me or make excuses for things I have done but to explain how I got to this point and where I am going now.
My life changing was thanks to my parents and the family I have around me. I also believe with all my heart that family is the biggest healer in life. All the times I have thought the world was against me can be easy matched with the times that I distanced myself from my family. My promise to myself has been never to let that happen again.
I should mention that I too have other demons that I had to deal with as I believe I also have a drink problem. Well to be honest I don't have a problem with drink, I just like it so damn much that I tend to search for the answers at the bottom of a bottle before anywhere and guess what....I never find it there. Guess it comes from a whole heep of shitty decisions when I was younger.
Actually can I just say here that I truely believe that everything that has happened to me through out my life, I caused. Someone very wise tells me that we make our own reality and I believe that whole heartedly. Everything that has ever happened to me is due to my self destructive streak and my inability to deal with things properly. So all this I am telling you is not to try and make you pity me or make excuses for things I have done but to explain how I got to this point and where I am going now.
My life changing was thanks to my parents and the family I have around me. I also believe with all my heart that family is the biggest healer in life. All the times I have thought the world was against me can be easy matched with the times that I distanced myself from my family. My promise to myself has been never to let that happen again.
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