I would like to thank everyone who has been reading my blog through this horrible time in my life. Like I have explained in the past I have always kept diaries but this has been the best therapy for me and knowing there are people out there who care enough to follow my blog has been amazing. I don't know that as I get better (which as I may have mentioned I am) you will all carry on taking the time to read this so before you go I wanted to let you all know how much I appreciate you. The old saying 'A problem shared is a problem halved' is so true, by sharing this experience with you all has made it bearable. I will continue writing my blog as this is the best therapy I could ever wish for so please stay with me because I love and value everyones time and each day the knowledge that you are there makes me a little stronger.
I am so so so proud of myself and obviously the Man, I set myself the task of walking to the curry night at the Fighting Cocks and...I DID it. I walked all the way there, had curry and walked home. I know this maybe seems slightly insignificant but the Man has to catch me frequently because I am so whoosy and lose my balance so this must put strain on him and for me, just walking and picking up my drop feet is difficult but tonight I conquered it and I am so so happy.
I need to mention as well that the email I wrote to that girl a few days ago, I I didn't ever email it to her. I like to call it transference, when I have something that I need done like that email, I write it out and that is half the problem resolved, writing out what I want to say, to be honest it would make no difference to her if I sent it, it would possibly just cause bad feelings between her and Mogs so I don't need to send it. I feel better because I have told you about it and that lessens the problem, I can't be responsible for educating her, she has never shown any compassion in the past for anything so I don't think it would make any difference.
At the pub tonight I realised even more how I am not over Skelly's death. I miss him so so much and I know there are lots of people in the same boat. It is his first wedding anniversary on the 21st November, he was with his wife for 26 years but only married a year ago, he didn't make it to his first anniversary. I play Gerry and the Pacemakers 'You'll Never Walk Alone', everyday because it makes me feel close to him, he was such an amazing friend I miss him. I worry about our friend Jan as well because he seems to work all the time, I worry that he is missing out in his life at the moment, working himself into an early grave. I couldn't bare if anything happened to him as well, he is a dear friend to me as well. Oh, he met the Man tonight and gave him the seal of approval, it was a brief meeting so I know that when they get to know each other they will definitely be friends.
Jess wisdom thought of the day -
Why do people call their friends 'mates', this is not true, they are not mates, or I hope they are not because there would be a lot of bizarre same sex sexual encounters if they are. I mean how did we go from friends to mates? When people say, 'I am going to meet my mates' I instantly think, 'your going to a weird sex act party in a pub', 'no your not your going to meet friends, peers, or buddies but definitely not mates'.
I thought I would share something else with you all, I started another Blog in October last year (2009) it was called ‘Dear Elizabeth’ because it was going to my new diary but it didn’t really work out like that so I only entered 3 posts and then went back to pen and paper but I thought I would share those posts with you because they are from Jess, its me and like I said last time, I have missed me.
So here are the 3 posts -
WEDNESDAY, 14 OCTOBER 2009
Ok, so I have written a diary since I was 6 years old and I thought that this might just be the new version. I am not Elizabeth but I have always written to her, she is my closest friend. Well, that kind of sounds as if I have mental issues, I write to someone who doesn't exist, maybe thats true, but hey.
I live in the heart of London and I am loving every minute of it. Recently my life has completely changed and all for the better. Whoever said hard work doesn't pay off were lying, it worked for me. I got a job in London after years of going no where. I had actually nearly given up on myself. A long line of shit relationships and nothing to show for it but a few scar, a bunch of debt and a complete loss of faith in people.
Sounding like a sad case story but no, not anymore. Live is amazing now and I am loving every minute of it. New job, new career, new life. I must say that the people that never gave up on me have always been my family. I have three brothers and my mum and dad. They always held out a hand for me and I always pushed it away, thinking I knew better.
I should explain that this blog isn't really for anyone else. I am not really writing it for your benefit, maybe this time not even for Elizabeths, maybe this is finally going to be for my benefit. Sorry if that has just put whoever might read this off, I am simply being honest.
WEDNESDAY, 14 OCTOBER 2009
I am sitting here not feeling too hot to be honest. I have an ear infection and it is driving me a little demented. I have been surfing the net randomly and I checked out some blogs under my name and how unbelievably different we all are.
I am always amazed at why people do things, why people write blogs, or use twitter. I am not writing this for any real reason but I am sure that others have a deep seeded reason for it. Oh I should have maybe mentioned that I am not going to tell anyone I know about this blog, I think it would defeat the purpose of writing it.
Oh something random is lately after years and years of biting my nails I have stopped. They have now become the bane of my life because I spend so long attending to them. Rubbish huh.
That kind of leads me on to tell you a little more about me. I am not the girlyist of girls (I know making up the spelling as I go). I grew up with three boys so I think I can be excused. I love a lot of girly things but I can't stand RomCom's at the cinema (waste of money), I hate women that scream for no reason, I rarely cry, I like to booze, I am emotionally challenged and i have the attention span of a five year old (if you don't have eye contact I am not listening lol!).
I don't want this to turn into one of those profile pages where I say w**k things like, 'I enjoy socialising with friends, going for a few drinks and la dee da da...' Basically, if your up for life, fun to be around and never judge a book by its cover we'd get on fine. I get critisised a lot for not taking life seriously enough which I have learnt to take as a compliment. Screw those people who are so serious and grown up they miss all the special bits. I like rocks lol! When people go away I like them to bring me rocks from different places. I am not very materialistic. My over night bag consists of a spare pair of pant, a toothbrush and possibly another top, this over the years I have named the 'Tink Kit' he he he!
I'll be back in a bit
THURSDAY, 15 OCTOBER 2009
I definitely found out that self medicating with wine is not the way forward lol! My face still hurts and now I have the dull ache of a hangover. I did have fun last night though, my friend K came round I made him dinner and I drank a whole heep of wine.
Did I at any point mention that I am Scottish and naturally my favourite food is haggis neeps and tatties, which is awesome because it doesn't matter how ill you are you can always eat it. It is like baby food for adults; no chewing required.
I am actually called a toy Scot because my family are all English. I was born and brought up in Scotland and lived there until I was 22 years old. I love Scotland and miss it everyday but it is a life I can't have anymore, I need to always move forward and not look back. So easily said, not so easily done. My best friend M lives there still and I miss her so so so much, we still speak lots and when we're together it is like nothing has changed. We have been friends since we were about 12 years old. I have known her since I was about 6, we went to the same primary school. We are so different that is why were friends.
I am going to write a proper post tonight, none of these nansy pansy posts like the posts from the past couple of weeks. I am feeling more and more myself lately and you will all be glad to know the larey Jess that you all know and love is on her way back. I must say over the past few weeks I have been feeling more and more that I was losing myself, I know that might not make sense to many people but I have known I was ill for a long time before my diagnosis and the recent weeks have made me doubt myself countless times. It is hard to face the world when people know you to be this larey character who likes a drink, loves to dance and will talk to anyone to suddenly be someone who can't concentrate, is in pain all the time and can't even walk. I have felt like every minute of every day another piece of me had disappeared, I felt I was slipping away and everything that made me Jess was going. It is difficult facing this disease and keeping a sense of yourself at the same time because the Monster at times seems to completely comsume me. At the moment I am trying to work on me now, I know you must all think, 'Wow, Jess is going to think of herself even more...is that possible' but I am afraid folks it is. I want the Jess that I know and love back, I have said for years I did not want an 'and' in my name, so I am determined not to end up 'Jess and Monster'. If anything, the 'and' that may creep into my life will only be welcome if it is 'Jess and the Man'.
Another thing that I find hard is people saying that I am 'amazing' in the way I have dealt with this problem. I love the fact that people think that but I feel like a fraud most of the time because I don't think I have dealt with the particulary well, I think the strong network of people around me have. This time has absolutely terrified me, not being mobile, not having any concentration, not feeling like a real person and everyday feeling like I have lost another piece of myself. I have wanted to cry so many times because I will never be able to feel my baby nephews because I have no sensation in my hands or face, when I say feel them I mean cuddle them and feel their baby softness. I will never get the feeling back in my hands and possibly not my face, learning to live without one of your senses is quite difficult to grasp and I just thank every day that it is not my other senses. Saying that I still have tinnitis in my left ear and I can not hear anything in that ear anymore, I am hoping this will pass but I have a horrible feeling that after nearly 4 weeks of deafness it might be a new feature. I want to make my life as good as it can possibly be and make the most of everything I have in case I wake up tomorrow and Monster has taken something else.
I feel on to of the world today, I have had a lovely day with my Nanny, Mum and Aunty M. I got a lovely card from The Man today with some of the nicest things anyone has ever said to me in it. Here is a picture of the card,
I am a very lucky girl in many ways and I can't believe how blessed I am to have someone like the Man in my life. I know, I know, I am bleating on about him again but for those of you who haven't met him, he is definitely someone you want in your life as a friend. I have honestly never met anyone like him before and the way he has stood by me through my illness. It is kind of funny how this all came about but it is definitely the best relationship I have ever found myself in.
Well I have so much I want to blog but I want to try and get to sleep before the Monster wakens up and wants to play.
Oh I must tell you that today when we were shopping I managed to get up and down a ramp in Chorlton, I managed to loose some money through my own stupidity, I got 3 new tops which I love and I bought a screaming red lipstick, I think I might be getting better. WWWWWOOOOOOOOOO HHHHOOOOOOOOOOO!
I hate when I have loads to say but I am tried so lets summarise -
The Man is amazing
I am getting better
I bought new stuff
Getting better in Chorlton
Bought BRIGHT red lipstick
Spoke to my Bro's, love and miss them all billions
Had a brilliant day with my Nanny, Mum and Aunty M
Free Walked (no assistance from Dylan or Geraldine)
The reason I have chosen the name of this post is where I sit in my parents living room I stare out at a rose bush, it has deep red roses on it. It is such a peaceful place here to gather your thoughts and re-group, I love being here, also helps that I have my Mum and Dad here with me. Mum sat up with me until about 3am because I was so dizzy and I got a lots of shocks in quick succession. Dad has stayed home with me today to look after me, I feel a bitty guilty because I am not as sick as I was last night, but I am loving his company.
A few months ago I had an odd experience with someone I knew from my home town, Mogs came to see me in London and I arranged to go and see Avenue Q (http://www.youtube.com/watch?v=_5SwO6OIho0) and I thought it would be nice if her friend who also lives in London came along, so they could see each other. So she came along, she was really rude to me all night which I accepted and decided I wouldn't let it bother me. I decided that not everyone can like you and she has never liked me but she is Mogs friend so I would attempt to make an effort regardless of her attitude. Anyway after a weird and rude evening she went her home and I later found out that she had phoned another girl from our home town and said things like 'it was obvious she was on drugs' and that she was worried about Mogs safety and was going to ask her if she wanted to stay with her instead. Mogs didn't seem to be worried about her safety and definately didn't come to any harm. The reason was because my speech was slurred and I couldn't walk properly. It has been bothering me so I wrote this email (I have taken out the names) and I would really like some feed back on it.
I have written this a thousand times and not sent it because I have tried to understand why. I invited you to the theatre a few months ago because I thought it would be a nice evening and an opportunity for you to see Morwen, I had no idea what would come of it. I don't know why you dislike me so much as I have had little to do with you in the past but could I please request you do not say vicious things about me to others. The reason my walking and speech may have appeared weird and like I was 'on drugs' to you is I am not very well, I have Multiple Sclerosis and it affects my walking and speech. It would have been better if you addressed the issue with me before discussing with outside parties. I don't mean any harm to anyone and I am hurt that someone who doesn't even know me could cast such judgements when all I attempted to do was have a nice evening with one of my close friends.
This has been a difficult time for both M and I as learning to live with and deal with such an illness is incredibly hard. I said I wouldn't say anything and I am not trying to argue with you I just wanted the opportunity to defend myself. This put M in a difficult situation as she is obviously defensive of me and through loyalty did not want to tell anyone about my illness. I knew there was something bothering her so pestered her to tell me. I will send her a copy of this message, as I don't want to put her in a difficult situation.
Like I said this message is not meant for anyother purpose than to give me the opportunity to respond.
I know this Road to Recovery malarky seems to be going on for a while but hey dudes, it is going to take a while, but I promise not to call every post 'Road to Recovery.....' cause that would be mighty dull. I am feeling better and better though, I will list the issues and improvements. Mobility - Still can't walk without aid but I am doing a little more each day (goal, to walk round to a curry night on Saturday with The Man.) Spasticity - Left Leg is still shaking a lot and locks, this should ease as general health improves. Balance - is still dodgy, every time I stand up I get woozy and this affects my mobility but should improve with general health as well. Bladder issues (not being able to go) - Been going to the toilet more lately and actually weeing WOO HOO! This is a relief because it means I am not in as much pain. Neck and Back issues - I have not had to stare at the ceiling as much as I have had to and now when I do I have the stars to look at so it isn't so soul destroying. Severe Headaches - I still have a sore head a lot of the time, I am getting my eyes checked on Friday so hopefully they can make sure it isn't being made worse by my eyes. Shocks - The shocks are still happening but are now a couple of hours apart and (fingers crossed) I haven't had any big nasty shocks for a couple of days. The shocks I get now do give a fair amount of pain that lingers between the shocks but I can cope a little better. Hand and Finger Pain - I still get hand and finger pain but it has not been preventing me doing things or keeping me up. Concentration - this has been improving everyday, I still can't follow a whole hour television show yet but I can do things like blogging, some knitting and I am going to hopefully be able to read a little bit this week. This is the most exciting thing for me because when you can't concentrate on things it starts to feel like you are totally cut off from the world. Also it is one step closer to getting back to work. Hearing in Left Ear - I have totally lost the hearing in my left ear and have tinnitus in it which is really annoying but hey what can you do.
Life is funny isn't it, the most important people to you are usually the ones that hurt you. In my family we have a need to help people, in a way, try and fix them and sometimes we can't see when someone can't be helped or fixed. Putting ourselves out until we have no more to give is a difficult trait that many of us have had in our lives. I think the problem with this is the others in our life have to bare these decisions we make and often get hurt in the process. I know I have tore the bonds in my family so they hang on tender threads because of the decisions I have made, but they have never once turned their back on me or given up on me.
To use Geraldine around the house as much as possible.
Go out for short walks with Dylan
Go out for day trips as much as possible with Chorlton
Knit - I love knitting and it is something that I can use to improve concentration and using my hands.
Beads and jewelery making - to improve concentration as well
I have been signed off for 2 weeks and I am determined to be better in that time and get back to work. I really hate being off work and feeling useless. I honestly don't understand people who don't want to work, I think there honestly must be something wrong with them. Working gives you a purpose and pride in yourself, many things give you purpose in life but I do believe work is a massive thing in life. I am can't wait to be back and have a proper routine.
So I have decided to make a plan for myself so I can get better. Thought I would share my plans with you, hopefully we can all share in the improvements. I have been walking around the house with Geraldine today, it is hard and my balance is still dodgy and my leg is spasming still but do you know what...I am going to be back on my feet whether Monster likes it or not.
They seemed then to give me the will to carry on and I think they still have that affect, they make me want to carry on and fight harder to get better.
Oh I know what I should tell you all, my Best Friend (Mogs) is going to work with my big brother and his beautiful wife. They work in an exclusive jewelery shop in Scotland, they specialise in the most amazing diamonds. I wish we had had this idea years ago, I mean how much easier and nicer is it when you group all your favourite people together? I love it.
Working together should and could heal the world. We live in our own little place in life and as a human I believe that this should not mean we turn our backs to everyone else because of their situation. I have found in life there are only a minuscule amount of really bad people in the world and the rest are just conditioned by their situations. Someone may appear bad but this maybe because what they have learnt about the world, if you have to fight everyday for your place in the world I am positive your priorities would be different. I think the reason that there is such a divide in life is we find it difficult to identify with people in different situations to us, this leads to a stigma or fear about another group developing, which if you think about it is wrong. We are all the same, trying to get to the end of this experience of life with as little pain as possible, some people just manage this better than others.
Being in a permanent state of pain has made me really think about things lately. I can not imagine what this experience would be like without the help of my family and friends. There are people out there that are diagnosed with MS and have no one, possibly have no money to get the things they need and have no one to talk to. This would be a life sentence of misery for someone and I feel like crying when I think of those people. I have been trying to think of something that I could do to help these people so the first thing I am going to do is put one of my email addresses on my blog so if anyone that might come across this blog and feel like they want to speak to someone they can email me and I will get back to them as soon as I can. It is a small step but it might just help someone and that would be amazing. Sometimes in life all you need is someone to talk to who kind of understand and with MS it is so difficult to explain how it makes you feel the only real comfort you can get sometimes is with someone who can feel it too, or something similar.
I have been thinking of a website to help people with MS, I know that there a loads of sites such as MS Society, MS Trust, Shift but I can't find somewhere with easy access to real people, not another Facebook idea (JAFFA - Just Another F*cking Facebook App) but somewhere that people can leave their email addresses, a picture and then people can find someone that they might identify with and can get in touch with chat to. It is an idea in the making and hopefully a project I can plan out and start work on, it should also give me some scope to play around and pick up on learning programming.
So enough of my plans to change the world and some more about me he he he! The Man, Mum and Dad took me out today and I am so so thankful. To be out and about in Chorlton is like a dream come true, being out and about without the horrendous amount of pain that it usually causes. It might be hard to imagine not being able to walk far but while you read this imagine what it would be like to feel as if you know the pain up your spine is going to be crippling and your legs will start to spasm as soon as you move them. Standing and walking is such a problem for me at the moment but also sitting in Chorlton has its problems as well so I will be happy when I can walk properly again. Funny at the moment that The Man has got himself a new women and he has to push her around in an adult pram, bet he thinks he won the booby prize. He is incredibly gracious about it though and never makes me feel like it is a problem, which is incredible for me but I need to find away to make it up to him.
I must tell you about my doctors visit the other day, I have been signed off for another 2 weeks and that is tough for me because I really really want to just get back to my life but at the moment I know that this is not possible. I am slightly concerned because the doctor did say that they are concerned that if this problem with my bladder continues I could risk my Kidney’s failing which is a slightly bleak possibility. I know that the steroids could kick me out of this relapse but I have also been on steroids before and I know the side effects and how they affect me so I really want to try and avoid them. I will be speaking to my doctor next week though to see if I can relieve this bladder malarky. I think on the whole though I am learning more and more to deal with this discomfort and pain which is a good thing, means life doesn’t seem too bleak.
I have been thinking (shhhh, it does happen sometimes), it is really tough being a girl. We pluck, plumb, blush, tease, fountation, concealer, mascara, eyeliner, eyeshadow, we hairspray, wax, laser, shave, we slim, sqeeze, stress and after all of this we turn to our men and they say, 'You look just as good natural baby'. WHAT ok so girls let grow eyebrows like Alister Darling, go o'natural on the legs and underarms and hey, who needs make up. I am not being serious, but we go through so much to look nice and some of it is damn painful, what do men do for us in the beauty department, and men, paying doesn't count. My train of thought came from having to pluck my eyebrows this morning, what a painful experience to have to go through weekly. Anyway I and I'm sure all the other girls wouldn't stop doing these beauty tasks.
I keep wondering why I really hate Coriander and I think I have found my answer -
'Dr. Gottfried turned out to be a former cilantrophobe who could speak from personal experience. He said that the great cilantro split probably reflects the primal importance of smell and taste to survival, and the brain’s constant updating of its database of experiences.
The senses of smell and taste evolved to evoke strong emotions, he explained, because they were critical to finding food and mates and avoiding poisons and predators. When we taste a food, the brain searches its memory to find a pattern from past experience that the flavor belongs to. Then it uses that pattern to create a perception of flavor, including an evaluation of its desirability.
If the flavor doesn’t fit a familiar food experience, and instead fits into a pattern that involves chemical cleaning agents and dirt, or crawly insects, then the brain highlights the mismatch and the potential threat to our safety. We react strongly and throw the offending ingredient on the floor where it belongs.'
I think it is mad that so many people hate Coriander and it is kind of cool to think it is an instinct that makes us hate it. I like to think that we are even in a tiny way still linked to nature. I know that we can't detach ourselves more from nature than we have already done so it is nice to think we still have some instincts left. I just took an instinct test online and here are my results -
Your score puts you in the highest category of social reasoning. You will see ethical and moral values as important to the needs of society and will appeal to basic rights or values. You might say "Honesty is a standard which everyone should accept" or "Life is sacred."
Conformity to ethical norms is important to you, in terms of a responsibility, obligation or commitment for all individuals, although you may be willing to consider exceptions in some particular circumstances. You are likely to suggest that with entitlement or privilege comes responsibility.
You will appeal to considerations of responsible character or integrity in others, preferring a consistent or standard practice of behaviour in order to avoid damage to social institutions such as the legal system.
However, you will want to see an adjusted case-by-case application of standards for the sake of fairness to all people. Lastly, you are very likely to appeal to standards of individual or personal conscience, as well as of honour, dignity or integrity.
All in all folks I would say my folks did a good job.
This has been a bit of an emotional times as you have probably noticed and I have found it difficult to concentrate over the past few days, so please bare with me. I promise I am writing whenever I can it is just hard at the moment, Monster is very powerful at the moment but I am trying to get back to normal (whatever that might be). It seems that my efforts to get better have possibly contributed to me getting worse before I can get better. Setting myself unrealistic goals, trying to get on with it apparently hasn't helped, I know I have probably said this before but...I think I am really sick this time, I'm not sure a smile and a brave face is going to make me better this time. It will help me but possibly won't be enough. I think I need to listen now, I think trying to pretend that this is nothing and everything will be better tomorrow might not be doing me too much good.
Today's Louise Hay's affirmation is 'I dwell in a world of love and acceptance.' I accept today that I have this thing that we don't know how to fix and that it is a life long sentence I have but I also accept that I have the best support network around me that this is never going to beat me. I know I bleat on and on about the importance of family and friends and my desperate desire to get back to work but that is me, these are the most important things to me. In summary, I might be cursed with MS but I am blessed with the best support network I could ever wish for.
I thought I should properly introduce you to Chorlton and Dylan.
Please meet Chorlton
Meet Dylan -
Bet your all jealous huh! Who has sexy toys like these? Oh, and nursing homes don't count.
At the moment I need Dylan all the time, don't tell anyone but I think that Geraldine is really upset with the new members to the Jess Saga. Just to recap, here is a list of the members of the 'Jess Party' now -
Jess (that would be me)
Monster (the one and only Multiple Sclerosis)
Sonny (Left leg brace)
Geraldine (Walking stick)
Dylan (Sexy new age Zimmer)
Chorlton (boy racer wheelchair)
Elizabeth (inspiration for the Blog and Jess's inner voice)
There will be a new addition to the party hopefully tomorrow and that will be the lovely 'Herbert' the neck/head brace.
This is to help with the over powering neck and head pain I get. Sometimes I get the overwhelming feeling that lifting my head will cause my neck to break, my head feels so heavy it puts so much pressure on my neck I feel so sick I can't move, I just have to lie and look at the ceiling. This is all going to be fixed hopefully by Herbert and I will be able to hopefully then be able to work on my concentration.
Speaking of concentration, the pain makes it difficult to concentrate on just about anything so I need to find a way to improve this, that is of course if I want to get back to work. I have been trying to do some jigsaws, so far I have done 2 50 piece ones and 2 100 piece ones so next is the 450 but the bits are so small and fanickaty that I can't get the concentration, but I will, it is a mission that I will succeed in.
I have had to use Chorlton today round the house because when I sit up or stand I was getting really dizzy and sick but I am doing better now, hence the blogging. I always want to blog but sometimes it is just too tough. If you want to see where Chorlton gets his name from watch this clip - http://www.youtube.com/watch?v=0UYMlV7kSZU
This actually inspired me to go back and find what once made me smile so I ordered the complete series of 'Rainbow Brite' and 'The Care Bears' if you are not familiar then SHAME ON YOU, this is why you have sad times, everyone needs Rainbow Brite and the Care Bears, they taught me how to be a better person. I will add some clips for those of you that are not familiar, please save your soul and watch them.
Rainbow Brite - http://www.youtube.com/watch?v=5Md4YypbBZ8&feature=related
The Care Bears -
So today has been an adventure and a half, today I bought (Daddy bought me) a wheelchair and walker. So my Aunty M has helped me name my walker ‘Dylan’ after Bob Dylan whose real name is ‘Robert Allen Zimmerman’ so my new Zimmer frame (walker) is rightly named I think. Also my wheelchair has been named by my Mummy, he is called Chorlton (after the T.V show Chorlton and the Wheelies). It was an incredibly hard decision to make but one I needed to. I am by no means saying that I will have these new characters in my life permanently but for now they are necessities. I feel like I have missed out so much in the past year because of my mobility problems so this should free me up a little. Also I am eager to do ever thing in my power to limit the amount of permanent damage Monster can do.
The Man and I spoke to his Dad on Skype earlier today and I am really looking forward to going out to Austria to see him and his wife. It is exciting to think that the Man is coming with me to America to meet the family that side and to Scotland to meet the rest. I am excited to have him in my life and this is a novelty for me because I didn’t think I would let someone in again...but I was wrong! It has been a really bizarre experience since we met because he has had his own trials and tribulations and now with me being sick, I think we are going through it together. I must confuse that he is very important in my life and I am so so so happy that he is sharing my life. Oh and he doesn’t get jealous with me spending so much time with Geraldine, Sonny and now Dylan and Chorlton. I am a lucky girl.
I have had a lovely evening with my Mum, Dad, Aunty M, Grampy and Nanny. We have had a lovely roast dinner and we’re now watching some Sunday night telly. The Man took me out earlier in Chorlton and it was the first time I have been out of the house without being in serious amounts of pain. It is lovely to be able to leave the house without being in so much pain that it becomes so difficult to enjoy the experience. The Man is so amazingly patient with all of this and didn’t mind taking me about in Chorlton.
Right I am going to sign off now because the Man has to leave soon and I don’t want him too. So I am going for a cuddle xxxxx
This is going to be a bitty post because once again I am feeling particularly rough. I want to write but holding my head up is making me feel very sick and my head feels so heavy it feels like my neck is going to break. Sounds fun doesn't it. I also think I have an ear infection in my left ear which is uncomfortable, it doesn't really hurt but I am deaf in that ear at the moment. The Man is driving me down to my Mum and Dad's tonight which I am very grateful for. Sometimes nothing fixes you better than your parents. Just being around them makes me feel better.
Need to lie down now.
Ok round two. I told you that this was going to be a bitsy post but please bare with me.
Someone reminded me of the importance of communication, and that is what this blog is mainly for so I need to attempt to be clear on how I am and how I think so anyone reading this will understand me and hopefully Multiple Sclerosis a little better. Funny, the wisest man I know (my Daddy) once told me that people who come into your life should both bring something with them and also be able to take something from the friendship. By this he meant you should learn things from one another and hopefully you are both enriched by your friendship. Well I have met some people in the past year that have definitely done that for me and I hope I have succeeded in bringing something into their lives. I did just write a description of all the people close to me but I thought this would not be wise, in my mental state right now I am sure I would miss someone out and cause offense so I thought it better not to.
Everyday at the moment something happens to me and I am amazed, I fall over and what would have hurt before doesn’t, my head feels so heavy I can’t life my head, my legs and arms twitch in weird ways, I try to walk and I lock up and it goes on and on and on (trying not to bleat on about my poor bladder anymore). All these things are happening to me, I am in so much pain 90% of the time I can’t even think straight but sometimes I just drift off somewhere, somewhere that doesn’t feel so bad, its like taking a holiday out of my body. I often have to lie really still on my back and I only have my ceiling for company and it is in this weird time I seem to drift off a little. The pain is unbelievable most of the time and it is hard to explain how uncomfortable you can really feel in your own skin but maybe just maybe I have found a sanctuary in my own mind. Yep, I know, I am heading into madness, but I am going to welcome it people, if it doesn’t hurt I will embrace madness.
So today I am very excited because my 2nd nephew was born last night. Harry was 6lb8oz (still think its weird we all want to know the weight). Please meet Harry...
So our little family has grown again. I now have 1 niece, Jasmine (10yrs old) and Ben (born 27th September 2010) and Harry (born 15th October 2010). They are our future and I adore every single inch of them.
My brother sent me a beautiful picture of Jasmine and Ben last night.
So two new babies in the Webb family. Can't to be well enough to meet my two nephews.
Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better,
Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better, Everyday in every way I'm getting better and better.
I would recommend watching these clips of Dr Elrington because he is not only a good speaker he makes it clear what he thinks and what he believes. Just to let you know he has given me the opportunity to take part in some Drug Trails but as I am such a cynic of the Pharmaceutical companies I think I will let others take that bullet for me Pharmaceutical. He is an extraordinary man and I count my blessings that I have him on my side, I also like the way he brings humour into the mix.
Wow, if I still have readers...Thank you. I have been awful lately and I really do apologise, I know that I have said this before but I meant it then and I mean it now. I have been miserable and that has oozed itself onto my blog and into the Man’s poor life so here we go, I would like to publicly apologise to everyone for being a nightmare. I might be in pain and be down but that can’t be helped right now, guess when I was up there with the Big Man I should have played a better hand at cards cause I am telling you, the ones I got suck. If anyone plays ‘Shit Head’ I am holding the 7 and I can’t get rid of it.
I got a phone call from a new friend today, I was introduced to her by my Uncle P and she also suffers with this horrible disease. Today I was reminded of how I first started this fight a few weeks ago, I was strong and determined and I want to get that back. The Monster can’t beat me, I have the love and friendship of so many people that I can not wallow in my own self pity like I have been. I need to learn everything I can about this problem and fight smart, learn to adapt whenever is needed.
I don’t have many smart remarks or wise cracks to share with you tonight, oh actually maybe one. Has anyone ever noticed how unhelpful doctor receptionists are? I have never met such miserable group of receptionist in my life, I thought the whole point of a receptionist was to meet and greet and organise the daily planner, along with a whole heap of other tasks I am sure. I would love to be in their interviews, do they especially look for people who have no compassion for others and hate sick people? Do they ask questions like If someone is in desperate need to see a doctor would you a) assist them and give them the closet appointment b) ask them a load of pointless unnecessary questions until they hang up c) ignore the phone. Obviously the correct answer to this particular question would be firstly answer c, but if they were short of candidates I am sure either answers b or c would do.
Oh man now I am on a roll he he he! Bet your looking forward to this. Ever noticed that there are some people out there doing jobs that honestly, they shouldn’t be. The other day I had to tell the man in the Bagel stand, how to make a Bagel. Now this might be my bad but surely if you have a job in a place called ‘Bagel Factory’ you might have some idea on how to make a Bagel. Think again this dude had no idea, I practically had to draw out instructions on a napkin. I always have fun ordering coffee as well, let me ask you, does this sound like a confusing order? ‘Please can I have a black coffee, with a small amount of hazelnut syrup and some cold milk on the side’. Does anyone mistake that for being a Latte? You are probably thinking, No Jess that does not sound like a Latte don’t be silly, that sounds like a Black coffee with some syrup and some cold milk. You would be right in your thoughts there and I tell you what...you don’t even make coffee for a living. Amazing huh, how us novices can understand that but someone who is employed to make coffee and is paid to do so can not understand that. It does make me giggle.
As you can probably tell I am going for my ‘Cantankerous Old Lady Badge’ well before I am due it but I have always thought that I should strive for the biggest goal and we are all headed that way anyway so I might as well have a head start.
Anyway i am going to sign off and go and enjoy an episode of Fringe, telling you if you have not seen it do so, it is brilliant (geeky but brilliant).
So I thought I would try and explain what my life has become lately and then you might be able to identify why my face has been whinging. So I get up, the leg tremors start, first while I lie in my bed, I try to stretch to waken and my left leg locks and tremors begin, they last for maybe a minute and when they stop my hip aches and I have to lie there again for 10/15 minutes before thinking about moving. Once I finally manage to get up I put my feet on the floor and go to walk and again my legs do not work they lock up and spasm, I can’t move them and it last about 30 seconds until I get moving and even then my legs are spasming for a few minutes. Oh my favourite game begins here where I know that I need the toilet, I know because my bladder is in pain and feels full but when I get to the toilet nothing happens, sometimes I have to sit there for about 30 minutes before a tiny dribble comes and that is it. I still need the toilet but I can’t go anymore and I have to make the decision to start the day. All this stress on my legs, hips and back causes great discomfort on my lower body. By this time I have usually endured at least one shock that has ripped through my body and started the intense pain through out my torso. Getting up and moving is usually one of the interesting parts of my day because this has all happened before I have even begun to think about what the day has in stall for me and I am already feeling the strain of the day. I start to get my computers out ready to attempt to do some work and then I head down the stairs for some breakfast. Now I should explain here that eating is not something I look forward to (or drinking as it stands) because everything tastes sour to me at the moment after eating and drinking the nausea begins.
Once I have eaten/drunk breakfast I head back up to my palace, this is uncomfortable and often a toilet break is required on the first landing toilet but once again the frustration begins because rarely will I be able to go. Then up to my room, which is my sanctuary and I feel safe and secure there. I turn on my computer and begin to work, this is interrupted with shocks and the pain from previous shocks, leg, hip and back ache ever so present. My concentration is so low due to the pain I end up being on a frustration ride that just end up with me feeling really down. All I want to do is work or study and I can’t, I can’t concentrate, the pain rips through me and the fatigue is immense. I battle with the feelings of giving up and finally give in. After a few more shocks I am reduced to little more than lying feeling sorry for myself, unable to do much more. The toilet intervals just add to my frustration and pain. A cold shower here sometimes eases my discomfort but can be a dangerous option as it can sometime spark a big shock. When I say big shock I mean one that literally takes me off my feet, it hits my kidney’s and I land on the floor, these types of shocks happen 3/4 times a week but if they happen in the shower it is worse (small space to fall oven leads to bumps and bruises).
Finally we get to lunchtime and then another decision is required, eat and feel sick, don’t eat and may feel sick with hunger, sounds appealing huh! I often choose the second because the end result is always feeling sick but others I choose to eat so I can attempt to do something in the afternoon. So I venture down the stairs and make something small, often having to break for a pointless toilet trip. I will always drink water or juice to try and encourage my bladder to empty, this often only results in pain but it is a necessary evil. After a snack I head upstairs again and attempt to do something, work, read, watch telly, soon none of these options become viable so I attempt to go to sleep, the fatigue by this point is soul destroying, keeping my head up right alone hurts my spine, my torso is on fire with pain and my legs are spasming. Usually I manage to drift off for 30 minute intervals which I waken from in need of the toilet.
Another cold shower is required for the Man coming home so I can have a few hours of normality with him, we have dinner and watch some telly which is a God send at the moments as he strokes my back and that seems to distract me from the pain for a while and I usually fall asleep after some blogging. The pain, aches, shocks and bladder discomfort remain but with some pain killers and the man stroking my back I manage to sleep. The fun seems to start when I am sleeping, I am woken about every hour with bladder issues and shocks, usually they co-inside with each other which you could in some ways say are handy. This continues until we are back at the beginning again...time to waken up.
I know this is probably not good reading but I am desperately trying to share with you all because I don’t want anyone thinking that I am giving up. I am not but as you can see hopefully, at the moment there is not a minute of the day that the Monster doesn’t grip me and I am desperate to get back to my life but I don’t see how it is possible just now and that terrifies me. All I want to do is get back to my life, do the things I want to, go back to work visit my nephew but I honestly can’t right now. Sorry.
Anyway thats enough for me tonight I am going to get some sleep.
Right folks I know that I have been whinging lately, sorry. I am listening to Frankie Boyle at the moment and he has reminded me how funny life is. Everyone has said to me over and over again...'does this mean you can smoke some weed and its acceptable' I would like to say, 'No' firstly I couldn't smoke it because my lungs would fall out and secondly if I can't walk how exactly am I mean to get any? For those of you who are interested there is a drug 'Sativex' that has been legalised and is used on the NHS http://en.wikipedia.org/wiki/Sativex. I know that some people would think that this would be cool but with my cynical nature about our Pharmaceutical companies I am thinking definitely not, live does kill you, drug companies kill you.
So once again I have been tormenting myself with not feeling well. Here is my problem, I feel terrible at the moment, I can’t move or breathe without feeling ridiculous amounts of pain and I can’t walk further than about 10/15 steps without both my feet dropping and having to swing my legs around from my hips. I have been getting these shocks in about 1 to 2 hour intervals and the exhaustion is beyond a joke. All in all life is pretty restricted at the moment and it is becoming increasingly more difficult to see the end of this relapse. I am scared that people will think I am going through this as a martyr, not taking the drugs because ‘I’ believe that they are bad, or for some other God forsaken reason. I guess in this post I am going to attempt to explain why I do not want to take any drugs and then hopefully this will absolve me of this feeling of guilt for being off work and restricted to my house or near vicinity. I know that you all might think this explanation is unnecessary but I think it is more for my own piece of mind so please bare with me.
Tegretol retard (yep there is a medicine called retard, who ever thought I might have to take retard to make me more normal) http://www.netdoctor.co.uk/medicines/100002540.html
Read it, I can say no more really. This would help reduce the shocks but could do much worse.
So as you might have notice I have got my swing on again with my blogging. I think I have realised something lately and that is I don’t feel good, I can’t do the things I want to at the moment but I have a wonderful life. I know I keep recapping on this but bear with me, I have a wonderful family whom I cherish, parents, brothers, sister in laws, nieces and nephews, grandparents, aunts and uncles, cousins, long family friends, friends that include my olds friends in the world to housemates to work colleagues, I have a job that I love and call me mad but has become my happy place (when I get there I know I am winning), I have the Man who is amazing to me, I have a house that I love, and finally I have my blog.
I thought I would share some links that I have found funny lately, for anyone that fancies a chuckle.
So I have been watching the Fringe with the Man and it is brilliant (http://www.imdb.com/title/tt1119644/) what could be better that curling up, safe and secure with the Man? I love the series and would definitely recommend it to anyone with an interest in the strange. Oh, and try watching House MD, who thought Dr House (Hugh Laurie) was so hot, to be honest this comment only extends to him in House, as House, with his American accent. I get giggled at for fancying House but not Hugh Laurie, some doughnuts keep telling me they are the same person....DOH! One is American and the other one is Bristish, daaaaa!
I have been feeling a wee bit better but I have felt panicky when I leave the house. All the complications that going out present, pain, inability to walk properly, being so slow, feeling self-conscious. I know this might shock you all but I have lately been able to understand why people get into wheelchairs
So, you know what drives me demented, I can't stand people who see you walking with a stick and instantly walk at you, 'Hey Dumb Ass That Is Not Helping Me', they flock to me like moths to a flame ( yes I did consider the flies round... but decided to be grown up and not use it). Also people decide to walk so far up my arse they end up scoping my feet and tripping me, that is not cool people. They do make me laugh though, in a strange way, I am walking with a stick, every step is considered and induces pain and these tits can't walk down a street without making the worst decisions on the planet. Thought process believed by Jess - idiot pedestrian: 'Huh, lady with walking stick, slow and in pain...quick, quick, quick bee line for her Now, Now, Now' me: 'Move you idiot, I can't get out of your way and I have a stick that I am not afraid to use', idiot pedestrian: 'Tut, lady with bad legs did not move out of my way, that was annoying' me: 'My God you IDIOT there is only two of us on this pavement, why do you need all of it...hope you trip over'. As you can see, I am secretly not a nice person but please people don't be an idiot when walking, if you see someone with a stick be considerate, they are not sporting it for fashion and I am sure if they could move quicker than they are. I have also thought about an earlier post and decided I was in the wrong, I should have not told you that I did not like someone at work, it was unfair. Ok, as I promised to tell the truth I am going to, I don't really like her but it has little to do with her and more to do with me, she is actually all right. I have a silly inferior complex about people who did proper degree's at uni. I have respect for most people with degree's and I am in some ways (more than some, a lot) jealous. This is not because I wished I'd went to uni when I was younger but more of an admission that I am not good at life and ever since I was a kid exams have terrified me. As you all know I am a gob shite (didn't hear it on radio 4 but I am in pain so bite me) I can talk myself in and out of anything but what I can't seem to get a handle on is believing in myself. I am not going to make the same mistake as she did with me, I am going to try and be nice. It is not her fault that I am self aware and intimidated in front of people with specialised degree's. Projection is a bitch, and I need to deal with those feeling and get on with it.
I had a conversation this evening with one of my housemates about the research and advancement in stem cells. I don’t get it folks, why are people trying to prevent the advancement in this field. Just to put some perspective on this, here are the pro’s and con’s from www.experiment-resources.com/stem-cell-pros-and-cons.html -
Stem cell research can potentially help treating a range of medical problems. It could lead humanity closer to better treat and possibly cure a number of diseases:
Ask anyone who suffers from or is close to someone who suffers from these diseases if this is a bad idea
Better treatment of these diseases could also give significant social benefits for individuals and economic gains for society
"We should not mess with human life."
"Humans should not be trying to play God"
Some argue that stem cell research in the far future can lead to knowledge on how to clone humans. It is hard to say whether this is true, but we have seen devastating consequences of other research-programs, even with good intentions, such as nuclear research.
Why wouldn’t ‘God’ want us to live without pain and disease? Why would he not want this if he made it possible? Why give us the tools and then send his people in to prevent us? He threw his own angels out of heaven for disagreeing with him about mankind and now he wants us to suffer?
Would any of you put your fate in the hands of Islamic fundamentalists? Why are we allowing all our fates to be in the hands of Christian fundamentalists? Religious people are usually smart and make (reasonably) good decisions but we know, without question fundamentalists don’t so why would we allow them to ruin our chances? I feel so strongly about this because they are preventing a cure for my disease being found. They are condemning me and millions of others to a life of pain and many to death, simply because they have the opinion ‘We should not mess with human life."and "Humans should not be trying to play God". I have opinions but they don’t mean others suffer, why is it ok for them to do this? Why do these people have so much power? Why am I so powerless?
I had to read a version of this to my big brother to ensure I didn’t offend anyone because that is not my goal here. Like I have said I like religion, in actual fact it fascinates me but I am in pain, I know that my life is going to be restricted and worst of all there might be help out there for me that a group of people are standing in the way of. The point about nucular development is null in void in my opinion because humans create things to kill each other, they always have done, they always will do, maybe just for once we could come up with a plan to save us as well.
Rant Stem Cell terminated.
I should share with you here how silly crazy I have gotten recently, I painted my nails the same colour as my pajama's today, that is how sad my existence is at the moment. It is good in the fact that my mum always told me ‘No matter how bad things are, get up, do your hair, do your make-up and things won’t seem so bad’, you know something, as ever she is right. I do this and it makes me feel better in myself, even if I am in my jammies and can’t do much I keep some self respect. Thank you Mumma.
Anyway bet your bored of hearing me babble, whine and bitch so I am gong to sign off here and go and bug my peers on facebook. Love you all.