Perfect weekend but riddled with pain

Well I think this weekend was a huge success, I met The Man’s Mum and her best friends this weekend and I had an amazing time with them all, they are absolutely lovely.  I was so worried about meeting them all and it turns out that we all got on really well.  They actually told me that they were a bit nervous about meeting me as well which sounds funny to me because I am the newbie in the fold but it was reassuring to know that.  They were all so lovely, The Man’s mum and her house mate were over from Spain and they were both lovely, her friend who lives in Coventry kindly put us all up for the weekend.

The Man has been such an amazing part of my life for the past few months that completing meeting his family and meeting his Mum was a big thing for me.  My parents are the most important people in the world to me, my Mum is my best friend (so good to me that she allowed me to inhabit her for 9 months, now that is generous isn’t it he he he!) and my Dad and my 3 brothers are definitely the closest men in my life so family is the most important thing in the world to me.  I think that it is important that The Man and his family have to be as important as mine if we are going to be a couple, partners or whatever you call it.

I know that I shouldn’t really moan on about the way I feel but I am finding it so hard to cope with having this constant discomfort and pain.  I have made huge progress I know that but it is hard to keep a straight mind when every second I feel my MS.  I feel completely consumed by it at the moment, I feel like I can’t stop what it is doing to me, I can’t seem to stop the constant pain and the only thing people can suggest to me is pain killers.  I know you might read this and think I am being ‘dramatic’ but I don’t want to go through my life numb, I would like to get to the end with some liver function, I would like to stop the pain because I know what the pain is doing to me.

Whilst we were away for the weekend I was in quite a lot of pain, I don’t like making a fuss and I feel bad if I think I am making a scene but some times it is so hard.  It has nothing to do with anyone else, it is my problem and I know this but I am so worried that this is going to take its toll on my relationship with The Man.  How can I expect him to want to stay with someone who has this thing that is so dominate in them.  It scares me that I might even hurt him in someway, he has been in a cloud for so long away from everyone that truly loves him, I don’t want to be a cause of any hurt.

I guess it is boring reading all of this and I am sorry about all the whinging, I really don’t mean to be a sour puss, I know that I will get over this stage but I can tell you today that it is tough.


MS videos
  http://www.youtube.com/watch?v=K8R5N7ZMlNk
http://www.youtube.com/watch?v=DvaJ9py-vOc&feature=related
http://www.youtube.com/watch?v=PtmuaSVHYLM
http://www.youtube.com/watch?v=KtgI9x39nVM
Words to the song -
Oooh... Oooh... Ohhh..
No matter what you say about love,
I keep coming back for more,
My head in the fire,
sooner or later I get what i'm asking for
No matter what you say about life,
I learn every time I bleed.
The truth is a stranger
My soul is in danger,
I gotta let my spirit be free to,
Admit that I was wrong and then change my mind.
Sorry but I have to move on and leave you behind.

I can't waste time so give me the moment
I realize nothing's broken
No need to worry about everything I've done
Lived every second like it was my last one.
Don't look back got a new direction
Loved you once, needed protection.
You're still a part of everything I do, you're on my heart just like a tattoo,
Just like a tatto, I'll always have you.

I'm sick of playing all of these games
It's not about taking ties.
When I look in the mirror,
Didn't deliver
It hurt enough to think that I could stop
Admit that I'm wrong and then change my mind.
Sorry but I gotta be strong and leave you behind

I can't waste time so give me the moment
I realize nothing's broken
No need to worry about everything I've done
Lived every second like it was my last one.
Don't look back got a new direction
Loved you once, needed protection
You're still a part of everything I do, you're on my heart just like a tattoo, I'll always have you.

If I live every moment
Won't change any moment
Still a part of me and you.
I will never regret you
Still the memory of you
Marks everything I do.

I can't waste time so give me the moment
I realize nothing's broken
No need to worry about everything I've done
Lived every second like it was my last one
Don't look back got a new direction
Loved you once, needed protection.
You're still a part of everything I do, you're on my heart just like a tattoo.
Just like a tattoo
I'll always have you.

Coventry adventure

I am in coventry visiting the man's mum and friends, having a lovely time but got no internet so thought I would check in and to tell you that I am here and still love you all x I will write tomorrow and tell you about my adventure x love to all x

Networks Brain Mush

I have been at a course today and I have had my brain turn to intelligent mush,  not that I am not grateful to have the opportunity to learn this stuff but it is tough on the old noggin.  If you are at all interested in some Networking malarky and in what I was learning about today then here you go, so link


Wire Shark - http://www.wireshark.org/
VLan - http://www1.cse.wustl.edu/~jain/cis788-97/ftp/virtual_lans/index.htm
‘Spanning Tree Proctocol’ - http://en.wikipedia.org/wiki/Spanning_Tree_Protocol
Log Table - http://www.mathlogarithms.com/images/ExplainingLogarithms.pdf
Subnetworks - http://en.wikipedia.org/wiki/Subnetwork
Subnetwork masks - http://www.subnetmask.org/
Ripe - IP addresses - http://en.wikipedia.org/wiki/RIPE_NCC
ARP - http://en.wikipedia.org/wiki/Address_Resolution_Protocol
Cisco - http://en.wikipedia.org/wiki/Cisco_Systems
OSPF - http://en.wikipedia.org/wiki/Open_Shortest_Path_First
IS-IS - http://en.wikipedia.org/wiki/IS-IS
RIP - http://en.wikipedia.org/wiki/Routing_Information_Protocol
BGP - http://en.wikipedia.org/wiki/Border_Gateway_Protocol
Djikstra - http://en.wikipedia.org/wiki/Dijkstra's_algorithm

This list was all the things I wanted to read up about after the course, so I thought I would share it with you.

We are going up to Coventry this weekend which I am sure I have mentioned, I am excited about it.  I can’t wait to meet The Man’s Mum and her friends, it is lovely for us to have been invited.  We are driving up there tomorrow night so I guess I should go and pack, tomorrow is going to be another big day.

Oh before I go I need to tell you about the pikey old lady on the bus who was trying to seal my purse.  I was extremely sore on the way home and when I got off the tube I decided to get the bus.  There were loads of people crammed on the bus but luckily I got a seat, there was one free in the row in front but this strange old lady didn’t go for it which I thought was weird to start with.  This lady stood right beside me and started digging about her bags on the floor and when I noticed what she was ‘really’ doing it shocked me, the cheeky old women had her hand in my pocket, around my purse.  I swiftly told her to remove her hand or I would make it obvious to everyone she was attempting the rob me.  Now you might be thinking it might have been a mistake but I ensure you that it wasn’t.

Right I must go, pack, sulk you know the usual.

Loves

My happy self will be back soon xxxx

Zen Teachings (sent to me by The Man's Dad)

1. Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me for the path is narrow.. In fact, just piss off and leave me alone.

2. Sex is like air. It's not that important unless you aren't getting any.

3. No one is listening until you fart.

4. Always remember you're unique. Just like everyone else.

5. Never test the depth of the water with both feet.

6. If you think nobody cares whether you're alive or dead, try missing a couple of mortgage payments.

7. Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes.

8.. If at first you don't succeed, skydiving is not for you.

9. Give a man a fish and he will eat for a day. Teach him how to fish, and he will sit in a boat and drink beer all day.

10. If you lend someone £20 and never see that person again, it was probably well worth it.

11. If you tell the truth, you don't have to remember anything.

12. Some days you are the dog, some days you are the tree.

13. Don't worry; it only seems kinky the first time.

14. Good judgment comes from bad experience ... and most of that comes from bad judgment.

15. A closed mouth gathers no foot.

16. There are two excellent theories for arguing with women. Neither one works.

17. Generally speaking, you aren't learning much when your lips are moving.

18. Experience is something you don't get until just after you need it.

19. We are born naked, wet and hungry, and get slapped on our arse ... then things just keep getting worse.

20. Never, under any circumstances, take a sleeping pill and a laxative on the same night.

Tube fun

So I have to tell you about the journey to work this morning, now I know I moaned the other day about missing my free touch up at the airport but I was not prepared for this mornings adventure.  We got on the tube and it was a real tight squeeze, you know where your armpit is massaging someones earhole and you feel a little embarressed becase you don't even know the persons name and your getting kind of intimate with them, early in the morning (don't tut people, you know what I mean...who else touches your armpit, let alone with their face).  So the tube stopped at the next stop and (excuse me sounding rude) this horrible sweety man in an over coat pushed his way on behind me, there wasn't enough room for him and when The Man pointed this out he said 'I can't miss another train', this means that he could not wait for 2 minutes as that was the next train.  This all resulted in me having this short, fat, sweaty man pelvic thrusting me for about fifteen minutes.

I don't really think being stressy on the tube is worth it and sometimes you have to accept that personal space is not a luxury that us mere Londoners can enjoy, but I do think that sometimes there are parts of the body that should not be shared with anyone other than a partner.  It does make me giggle that in no other walk of life you would allow anyone to get that close to you but when you have to get to work 'personal space' is a secondry consideration.  Remembering not to get stressy and trying to find the humor in it does the soul the world of good, funny isn't it, reclining seat and I want to hurt someone, man handled and I get the giggles, definitely think I am mental.

'Writers Block'

I am wondering why my brain goes a million miles an hour when I am at home.  I think because my body has to rest my mind goes into over drive.  Today I set myself some strick things I had to achieve, those being -
Emailing The Man's sister about a dinner invite
Finding out about hotels in Gatwick, one in particular which I discovered is not a hotel
Price flights for later in the year to Vienna and to Malaga
Write a Thank You note
Find out about the over night release at work
Do the online Scrum Course
I managed to get most of them don’t which is great.

I don’t have good writing thinking tonight, I can’t explain what I mean by that just the words are not with me. I find writing to you so easily sometimes but sometimes I get what I can only describe as ‘writers block’, I have things to tell you but I just can’t find the words.

I thought I would some information about where the Ball was, I noticed (well my Dad noticed) that I hadn’t told you where the Ball was held, it was in the Hofburg Palace in Vienna. Here are some pictures and a link on the history of the palace -

http://en.wikipedia.org/wiki/Hofburg_Palace

Flying through the air

So this time I am sitting on a flight on the way back to Britain from Vienna, I don’t like to moan but I really don’t think people should be allowed to put their seats back on a short flight, it isn’t as if they have far to go, 2 hours.  The reason I mention this is I am using the Man’s computer (Priscilla, named by me because she is purple) and I have her tilted up in a pretty uncomfortable position that I can’t escape.  I also find flying particularly difficult most of the time because it is one activity that I know definitely aggravates the Monster, so when people put their seats back it forces me into an extremely uncomfortable position.  Nevermind though I have had an amazing weekend and I will not let this spoil it for me.  I realise more than ever in times like these that I am stuck with the Monster and a lot of my life is going to be a compromise of pain, and like everything in life, what I enjoy doing unfortunately causes me the most pain.  I should mention that when other people put their seat back it forces me to do the same whether I am Blogging or not and this is where the problem arises, the relaxed position in a chair for me is the most uncomfortable and at this exact moment in time I am close to tears.

I will speak of something happier now and that is the amazing weekend we have just shared with The Man’s Dad and E.  We really didn’t go mental and rush about too much after the Ball which was a long day but worth every second.  The Ball was amazing, it was  like having sensory overload, there was so much to see, the whole experience was something that I will remember until the day I die.  I feel so lucky to have the opportunity to go to such an amazing event, to be apart of something so very special.  E looked absolutely stunning in her dress and The Man and his Dad look so good all dressed up.  I did have a pang of jealousy to all the women in their pretty shoes but I can tell you I saw a lot of ladies looking uncomfortable and narky because their feet looked so painful in shoes that were slightly ambitious.

The rest of the weekend was so relaxing and it definitely made me realise how fast even our dulled down lives in London are.  It is hard getting the true perspective in London because there is just so much going on every second of everyday, quiet time is really not really quiet as the sounds of London vibrates through your body every second.  In Austria their air is so clean and fresh and we were at a higher altitude so it was tiring just relaxing if that makes sense.  It was so lovely to have truely fresh, good food, E looked after us so well every day with the most amazing meals, which I hope to steal the recipes for.  I like the idea of eating stew at lunch and then having bread, cheese, meats, chutney and pickles for an evening snack.  It makes more sense to eat well at lunch and then have snacks at dinner time, especially after a hard days work.

We will be heading back over as soon as we can hopefully, both The Man and I loved every second that we were there.  I hope one day that we have a house that we can invite them to, to return the amazing hospitality we were shown.  It was lovely to see The Man and his Dad together, I am a strong believer in the bond we have with our parents, I know that I am extrodinary lucky for having the parents I do but I honestly believe that The Man has the same luck as I do.  Unfortunately we tend to go through life battling with those who love us and often know the best for us.  I know that my poor parents went through hell with me but now I hope they are proud of the person I have become and I can look at me and know what amazing parents they were to us.  I know that my life would have been easier along the way if I had listened more to my parents, if I had taken their advise and not tried everything I could to repel against them.

I thought I would share with you some of the examples where I was wrong and my parent were right -
Staying in Private educations would have been good for me in my teenage years.
Hand writing is extremely important
First impressions mean a lot
Education is important and university can opens doors.
Moving with my parents would have done we good
Too much drinking is extremely bad for me
Back packing around Africa alone isn’t a smart idea (sorry Marie, you were right too)
Surrounding yourself with interesting people broadens your mind
My home town isn’t the whole world
Looking feminine and acting feminine is important
Money doesn’t make you happy but does make life easier
Family is the most important thing you have.
Being both interested and interesting is important.

I honestly could go on and on and on but I won’t bore you, what I will say though is however wrong you might think they are and however right you truely believe you are, in my experience they are right 99% of the time.  I am very lucky because I have parents that have never said I told you so (even though I really think they should have done, but thank you for not) they have loved us unconditionally and allowed us to make our mistakes, allowed us to learn and always been there for us when things went wrong and even when things turned out ok.  It must be the hardest thing in the world being a parent and although I think I would now love to be one it terrifies me.  How do you know if you are doing the right thing?  How do you know how to handle situations with you children?  How do you love them when they are being awful?  How do you remain steady and let them make their mistakes?  There is so much I don’t know but I would love to learn and between my parents and The Man’s parents I think we have a pretty good basis to learn.

I feel lucky to be with The Man and I am sure if you met him you would agree but I also feel very lucky for the people that he is bringing into my life,  his Dad, E, his sister and her partner, I am meeting his Mum (which I am both nervous and excited about) and the list goes on.  I am so happy to have the opportunity to meet these people that without him I would not have.  His Dad and E are absolutely fascinating, with stories that you would never imagine, I think actually that they should write a book, either together or seperately both their lives together and individually are stories I would love to read about.  It also makes me interested in so many different things that I would never have know about other wise and is going to make me learn German which I am excited about, all I can say just now is -
‘Entschuldigung ich spreche keine deutsch’ - ‘sorry I speak no German’
‘Gruss Gott’ - ‘Hello/ Greet God’
‘Danke Schon’ - ‘Thank You’
“Auf Wiedersein’ - Goodbye’
So as you can see I have some way to go, but at least it is a start I guess.

I think we are just about to land in Gatwick so I think I will love you and leave you for now but I promise to be back soon.  Thank you for keeping me company.

Loves always

Jess xxxx

Austria

So it is Sunday morning and I am still in Austria, I can't begin to tell you how amazing it is here and what a lovely time we are both having.  I thought I would add a map of Austria so you are all aware of where we are -

As you can see Vienna is in the top right of this picture in what they call 'Lower Austria' that is the region.  The Man's family originally comes from this part of the world and last night his Dad told us all about their ancestors, which was absolutely amazing, it is fascinating listening to it all and I really hope that one day he manages to write it all down.

We are going out to Pernitz which is the local town, and then we are off for coffee and cake (my fav he he he!) We are not trying to race around and see everything because we are planning to try and come over more often.  I think we have already agreed to come over in the summer to help bring in the wood as the house here is heated by wood stove and all the hot water is heated by the fires as well.  It is honestly a different way of life here but I have completely fallen in love with it.

Back soon xxxx

Princess did go to the Ball

So people, I am now a Ball savvy girl, are you impressed?  I was so so nervous, I can’t even begin to tell you but I had the most amazing night.  Considering I spend about 90% of my life in pain at the moment I must say, I still do the most amazing things.  I am impressed with myself at the moment, I am trying to remember all the things I am doing and all the things I achieve because I can tell you now, it is difficult this pain thing.  It is easy for me to get lost in my own problems at the moment as you all know but reminding myself that I am doing well is therapy for the soul.

Yesterday was a long day, 23.5 hours to be exact.  We woke up at 4.30am in a hotel in Gatwick, had breakfast (coffee, Actimel) and jumped in a Taxi to the South Terminal.  We got to the airport at about 5.45 and checked straight in.  I didn’t even get a free touch up by those crazy angry looking women on the Security Desk.  I always giggle when you go through that x-ray machine and it beeps, it is like they have never heard it beep before and instantly jump into action, running their hands all over you whilst frowning so much their entire face looks as if it is going to snap at the weight of the frown.  I have been tempted in my younger days to carry around a beeper just to see if any butch angry looking women run over and deliver one of these hysterical touch ups or whether it is just simply saved for the airport.

Our flight with Easyjet went quickly and without a hitch.  I did have a weird guy sitting behind me that had a piece of tissue paper stuck to his face, obviously had a shaving accident but forgot to remove the weird bit of paper from his face and strangely enough his friend hadn’t mentioned anything.  This odd man who was no taller than me managed to repeatedly kick me in the back, now I understand that ‘economy’ actually means ‘no room’ in a polite manner but everyone else manages to keep their legs in check.  To be honest I was so excited it didn’t bother me too much, I think if I had been on a long haul flight I might have attempted to stick my foot up his bbbeeeeeeeeeeeeepppppppppp!  **censored for the purposes of parent viewing**

When we got to Vienna airport everything ran so smoothly, I am amazed at how well thought out their airport is, it is lovely.  The Man’s dad met us at the gate and by that point I was bursting with excitement.  I have been looking forward to this trip ever since we agreed on it and it is finally here.  The drive back to the house was lovely and The Man’s dad kindly asked if I would sit in the front of the car and he told me loads about the surrounding area.  As you might know I love facts, I love learning about new things, places, people and general stuff, so it was amazing having a commentary on the way back.  We got back to the house about 1pm and I finally got to meet the lovely E (name obviously not just E but only fair not to mention).  It was amazing to finally meet her and she is every bit as lovely as I thought.  We had some lunch (zucchini soup with a dash of Gin) and then we all headed off for a snooze before our big night.

Heading to the Ball was nice, The Man drove with his Dad directing, E and I sat in the back and talked all the way there.  Vienna is such a beautiful city, the architecture is absolutely stunning, we didn’t have much of a chance to see much of it but we are heading back on Monday.  We got to the Ball and I must say ‘WOW’ it was amazing from start to finish, it was honestly like being a Princess and arriving at a grand palace.  The dresses were absolutely amazing, if I ever in a million years thought I could be over dress I couldn’t have been more wrong.  The men at the Ball were dressed to the nines as well, a lot of them were obviously in military dress and looked amazing.  I think my favourite part of the night was people watching, the women looked absolutely amazing.

I will add some photo’s and then I must sleep because I am a tired puppy tonight and the pain is now quite unbearable so I am going to sleep.

Loves always xxxxx

Anxious Jess

I have come to realise that I do not deal with stress, I just can't handle it at all.  The Man last night was getting a little stressy about the whole holiday thing, flight information, travelling to the hotel, packing and what I was to wear on my feet, not that he was being horrible or anything just that he was focused on things and was quite short with me instead of listening to what I was saying.  It is silly because he is lovely and he was just doing what anyone else on the planet would do, the only problem was it was stressing me out, it was making my heart race and I was getting really agitated by it all.  I like when things are calm, I like when we can take our time and just work on getting things done as a team, not The Man does everything at a million miles an hour and I stand and wait for a place to fit in.

Lots of things in life at the moment stress me out, things that wouldn't necessarily stress anyone else out.  I find myself worrying about things that I have no control over.  I can't get it out of my head, then my heart starts to race and I get cold sweets.  I know that it is silly, I know that I can't control everything in the world (which personally I think is a shame) but I don't know how to fix this.  I don't know how to stop myself being so uptight and nervous all the time.  I know that it said being anxious was one of the side affects of having MS but I didn't think they meant it would turn me into a rabbit in headlights.

I thought this morning I would show you the audience to the Blog because it amazes me, this is the 10 top places I get page views from -

United Kingdom 3,921 United States 1,217 Spain 94 Australia 75 Canada 44 Austria 40 Russia 40 Moldova 19 Germany 15 Japan 14

I also have readers in Norway, Belgium, Egypt, Iran and many many more.  I think it is absolutely amazing and it really does help me to thing people would actually take the time to read my blog.  I can't see who these people are I can just see what countries look at my Blog.  So I guess all these people know I have toilet issues, I am a nervous wreck, I give The Man a hard time, I hate my rest days.  I just hope that there are some good things to reading my Blog as well.

Right I better go pack and get ready for my adventure later on.  I will try and write before the day is done.

Love to you all xxxxx

Work stuff

Wow!  Today was a good day, sore, a little tough but good very productive.  I love my job, I really do, I love going to work, I like the people I work with and I feel I have so much to learn and have so many different routes that are available to me.  I think that working in Support it is easy to get could up in a negative downturn in the job because we are there to 'defect manage', our whole job is around finding the problems and finding ways round them.  I think that the problem we have is we get caught in a negative spin, we identify all these problems and we don't see many of them being resolved or fixed but saying that things do get better and the problems change and evolve, some good, some really really bad but nothing majorly show stopping.

Every day is a challenge at work, I am constantly learning, I am constantly developing in my role.  I am working hard at the moment at my organisational skills, holding the daily (Monday, Wednesday and Friday) stand downs, structuring them differently from before.  I have taken over some different tasks and here they are -
Writing help page for Applications we support
Re-Do our release notes
Sorting out all our BUGS, ISSUES and Support Stories prioritises
Helping with phoning and emailing agents to help with knowledge gaps
Daily Stand downs (Monday, Wednesday and Friday)
Giving our boss the ISSUES that cause us the most pain
Team night out for our team and the other team our Boss is in charge of.

Here are the idea's I have sent round for the team night out -


Comedy night on a Boat
Open Mic Night
Magic Night
Burlesque Evening
Medieval Banquet
Video Games Night



I am going to go to sleep now but I will tell you more in the morning xxxx

Irregular, Irrational, Heels

Sorry I didn't write yesterday, I went to see Tron Legacy with The Man and it was brilliant.  We got back really late and I was so so tired.  I haven't written earlier today because I don't have as much inspiration as I usually have, which I don't know why.  Sometimes I am bursting with things to say but today I haven't at all.  I thought I would tell you a little more about my Heel obsession.  If you don't already know I can't wear heels because MS has made it nearly impossible, I have balance problems and I also have no feeling in my feet topped off with some drop foot, making walking anywhere an adventure but I am determined to someday walk in heels.

I currently own a grand total of 9 pairs of boots, 1 pair of shoes and 1 pair of flip flops.  I am going to give you a run down of my footwear (yep I know how excited this makes you but I have nothing else to tell you today!)  so here you go -
2 pairs of flat boots
Ugg like boots (that I wear only as slippers or in my wheelchair)
1 pair of snow boots
2 pairs of boots with 6cm heels
1 pair of boots with 7cm heels
1 pair of Timberland heeled boots with 8cm heels
1 pair of boots with 10cm heels (I can't balance on yet but I will)
1 pair of Irregular Choice shoes with 10cm heels (totally amazing shoes, definitely can't balance in them)

The comfiest boots to walk in the moment are the ones with 6cm heels, they lift my foot so that my drop foot doesn't bother me too much.  Flat boots at the moment (hopefully just whilst I am still not too well) are really hard to walk in but ironically help with my balance but are really tough with the drop foot.  The 7cm boots are comfy mostly and help me walk but standing up in them for too long is uncomfortable because I do have to concentrate quite hard on my drop foot and balance can be affected if I am tired.  I hope to one day to be able to walk in my 10cm's, I think this has all come about because I feel like someone has told me that I will never walk in heels again, and that doesn't sit well with me.

It is weird isn't it that we go through life, believing we know ourselves, believing that we know what we like, who we like, where we like and all that stuff when in fact we don't, we are constantly changing we are constantly developing.  For example I never wanted to be with anyone who went to university when I was younger, I wanted to be free from all that, free for conforming and now I am with The Man, who not only has a degree but got it from Oxford University and has a masters degree.  I used to hate curry and wine but now I do, I used to hate wearing heels.  I know that this heel thing is irrational but I just can't shake it.

Right I need to love you and leave you all just now because it is 11.47pm, and I promised I would not write late, sorry Daddy, promise I wasn't on Facebook.

Love to all
Sleep well

Jess xxxx

Song of the Day

We Used To Be Friends  - The Dandy Warhols 

http://www.youtube.com/watch?v=Bm1g5Yg0hUw

A long time ago, we used to be friends

But I haven't thought of you lately at all

If ever again, a greeting I send to you,

Short and sweet to the soul is all I intend.

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

Come on now, honey,

Bring it on, bring it on, yeah.

Just remember me when you're good to go

Come on now, sugar,

Bring it on, bring it on, yeah.

Just remember me when.

It's something I said, or someone I know.

Or you called me up, maybe I wasn't home.

Now everybody needs some time,

And everybody know

The rest of it's fine

And everybody knows that.

Come on now, sugar,

Bring it on, bring it on, yeah.

Just remember me when you're good to go

Come on now, honey,

Bring it on, bring it on, yeah.

Just remember me when.

We used to be friends a long time ago.

We used to be friends a long time ago.

We used to be friends a long time ago.

We used to be friends, hey hey

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A long time ago, we used to be friends

But I haven't thought of you lately at all

If ever again, a greeting I send to you,

Short and sweet to the soul is all I intend.

We used to be friends a long time ago.

We used to be friends a long time ago.

We used to be friends a long time ago.

We used to be friends,

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

A, ah-ahh-ahh-ahh

MS Malarky

Finally feeling settled.  For years and years I felt lost and I think that it was because I knew something was wrong with me but didn't know what, years of thinking it was my head.  I know this might sound strange but since getting my diagnosis I feel that I have found myself.  This has been helped a lot about The Man as well, he came with me to get the diagnosis and met my Mum for the first time.  The Man and I had been friends for a while but only really got together just as I got my diagnosis, most people would have run a mile, but not him, not The Man, he has been through all of this with me, since the day we got together and not once has he made me feel bad about things.  Although my life is a bit of a mess at the moment health wise everything else seems to have improved by a billion percent.

Although my life has improved 10 fold I still have this annoying MS malarky going on, my latest thing is high heels, now you might laugh but it is true, I want to walk in high heels.  Due to my foot drop I find walking difficult to say the least, but I have found wearing a heeled boot helps, but there is another issue and that is my left ankle/knee.  I have no feeling in my left foot/ankle and have little to no control over it so although walking is better in heeled boots sometime my ankle becomes so wobbly and makes it nearly impossible to walk.  This has made me determined to learn to walk in heels, I know that this may sound silly to some people but it is like someone has told me that I will never walk in heels again and I don't like that at all.

This adventure swallows me whole everyday, throwing new challenges at me all the time and all I can do is wake up and remember all the things I have to smile about.  Somedays I don't want to move I want to hide in my bed and curse the world for making me feel this way but then I feel The Man cuddle me tight and I know that however bad I might feel it won't last forever and I have everything I need to be strong and get better.

Going to sign off and get some sleep.  Loves folks, till tomorrow xxxx

Da Man and Me

From Ramble to Babble

How is everyone today?  I am good, we have decided to stay an extra day down at my Mum and Dad's so thats good, I love being down here.  I am lucky that when I am having these crazy moods my parents seem to help ground me.  The Man does an amazing job of looking after me when I am being mental and I like the fact that he has the insurance that when I am being mental my family are quick to jump in and tell me so.  I would love to tell you that because I know that sometime I know I am nuts that I could prevent this from happening but alas this is not so, I am nuts and sometimes I am nuts and I can make no promises around this at all.

The Man had a big day today, he had to go back to his old house and speak to his ex partner.  I am sure that most of you know exactly what it is like breaking up with someone and how emotionally draining it is, added to that stress he has me to contend with so I have to try my hardest to behave.  He is a strong, steady, considerate man and is trying to do the best he can by everyone, hopefully he won't get hurt in the process.  Anyway, he is home with me now and seems to be in good spirits, I think today went better than he had expected, which is good.  I am hoping that something good comes out of this difficult time for both of them, she sounds like a strong, intelligent, family orientated women so I am sure that life has many good times ahead for her.  One day they might find they can be friends and I will never try and stand in the way of that because they spent a long time together.

I went shopping with my Mum today I got some boots which are higher than any other shoes I have but they are lovely, they are for the Ball I am going to next weekend.  I will have to practice on them but I am sure I will be fine, it is more about my feet hurting than me falling over.  I was going to try and add a picture but the website won't give me the pic, grrrrrr!  I also bought a bright purple woolen coat which is stunning, it was from Wallis and was in the sales so I am impressed with my bargins.  It is weird that I now actually enjoy going shopping, I love going shopping with my Mum and  The Man, but it is my Dad's opinion that is the final decider if I keep my purchases.  When I buy something new I always try it on and ask Dad for his opinion, he is so honest about it that it instantly gives me confidence in my purchase.

Anyway I am babbling now, I have moved on from rambling to babbling so it is time for bed.  Love to all xxxx night night xxxxx

Weirdo

Think the Man will like this one, my goodness I'm his.  I think if their were honorary medals given out to civilians he should get one.  Who would have thought at the age of (he he he!  better not say, cause he's old...very old...grey and everything) he would be carting his girlfriend around like he was playing something to society.  I can tell you, I am definitely not where I thought I would be at the grand age of 28, first set of wheels...a wheelchair and a zimmer frame, tell me now thats not kind of cool.  I sometimes think my inability to grow up and mature has been in preparation to all this, I mean I have gone from a pram, to a push chair, dragging myself round with a walker, to nervous stumbling walking,  dragging myself round with a zimmer, to a wheel chair and now to the stumbling around walking again. Tell me that isn't cool, I don't think I was ever meant to grow up conventionally, I think whoever is up there looking down on us all is having a right laugh with me.  To be honest if I was up there I would be finding this hysterical but from down here, I tell you, it isn't that funny.

Today was a work day, so was a success day.  The Man did an excellent job of getting me to work, it was a painful day today, the stairs in the tube station are a real problem for me.  One of the effects of this illness is the overwhelming feeling of being heavy, really heavy.  Every step that I take sometimes is just so difficult physically that mentally it is completely exhausting.  Once I am at work and pained it through the recovery time though it is good, I am where I love to be, doing what I love to do with people who I like spending time with (especially my mate Jennie...if your reading this Jennie, you make my day x).  I spoke to the girl in HR today and she was lovely, she told me that there is a boy (man) in the company that has just been diagnosed with MS.  I told her to pass my Blog address to her and tell him that he is aways welcome to get in touch with me.

Anyway, I need to go and get some sleep xxx

Loves xxxxx

Sometimes even with everyone around me, I still feel lonely

I know it sounds silly but sometime even with everyone around me I still have an overwhelming feeling of being lonely.  Having MS and experiencing this constant pain makes me feel different to everyone around me and I feel isolated, removed from everyone because I am a prisoner in my own skin.  I know that people read my Blog which is amazing, I have an amazing Man, I couldn't wish for a better family, loads of close friends but somehow I am left with this heavy heart that I am alone, I am locked in here away from the life I would like to lead, screaming from someone to save me.

This is not a woe is me, I am lucky in a billion ways but not in some, this is just an observation because I promised to tell you all the truth xxx

Superhero - 'The Stresser'

Thought I would write a quick post as it is 9.30 in the morning of my Thursday Rest Day.  Today is going to be slightly different from a normal rest day because I am going to meet my eldest brothers Boss and his wife, they have been much more than just employers to them and have become apart of the family.  We are meeting up and going to a lovely restaurant called Gilgamesh http://www.gilgameshbar.com/

Wow, I have another problem that I am getting irrational about, I just can't seem to shake this annoyance.  The Man is nothing but amazing but his situation seems to upset me at the moment, only because I want to look after him, I want to make sure that no one has control over him (and yes that means me as well) but all I seem to do at the moment is turn into this two headed monster that is narky and bitchy.  Tell you what folks if I were a superhero at the moment I would look a little like this

One side of me knows how ridiculous I am being and the other side is horrible.  I think my superhero name would be 'The Stresser', and my power would be to completely exclude all reason in a situation and create a bubble of stress that can completely engulf the room in which I stand.  I knew The Man's situation before this began so why it bothers me just now I have no idea.  I think I am just feeling horribly insecure because I am ill, or maybe I am just a weird psycho.  I wish someone could save me from myself, I wish someone could put me to sleep and wake me up when I am better.

It is a horrible thing to have to deal with when you know you are acting in a way that you don't like, when every tiny thought you have has a 50% chance of becoming the biggest problem you have ever faced, when in fact it is so small normally you would not have given it a second thought.  The Man is amazing in about a billion different ways, even if I had dreamt up the perfect partner I don't think I could have thought him up.  I know that when I am being a Monster it is not acceptable and I always apologise for my awfulness.

I shall go just now but I will be back later, promise xxxx

Crazy Female...Awch!

I am not entirely sure how much sense I make at the moment so I am going to write a plan for this blog post, about the things I want to tell you about.
·         Emotional side of MS
·         How bad it is being female
·         How I need to buy shoes for the Ball
·         What I am currently working on at work
·         Graze
 
So the emotional side of having MS is a lot like torture I would imagine, I mean that every day is a test of wills and you have no idea whether you will win or the Monster will get you.  Trying to explain what it is like to you is really difficult because before I was diagnosed I found it hard to explain to anyone all the things wrong with me.  Like I have mentioned before I honestly thought I had given myself Munchausen’s, I couldn’t understand how one person could have so many things wrong with them, so the only conclusion I could come to was that I was doing it to myself, that in some way I must be attention seeking.  Although I have found out that this is not the case it doesn’t stop the ‘what if’ going round and round in my head.  I have the brain scan’s to prove to myself that it is not imaginary and there are physical reasons to why I am like this but after 10 years of doubting my own sanity I think that it will take a while for me to get over this. 
 
I get frustrated with myself because I want my life back and I also get down with the haunting feeling of ‘why me’, but I know that there is no point to these feelings.  I can’t control why this happened to me and I must say for years I worn this body like a meat suit, with no consideration to what I was putting it through.  It is amazing how your views change when you are faced with something like this, now I don’t want anything to damage what I have left.  I sometimes wonder if I would be in this state had I known all those years ago that I had Multiple Sclerosis.  It feels like someone has pressed a massive ‘Pause’ button on my life and I have no control over it at all.  The psychological side of this is it seems to have turned me into a complete weirdo, things bother me now that would never have before, things that are so farfetched that it is ridiculous even attempting to think about them let alone worry about them.  It has also knocked my confidence in a massive way, I find it hard to speak to people at the moment because if my brain is fuzzy I can’t get my words out properly and then I sound really stupid.
 
I think that there are certain times of the month I seem to become even more irrational than normal, I know this is normal but I find I am a little bit mental. I am so glad that I have 3 big Brothers and an amazing Dad to talk me off the ceiling when I am being a head case and for the poor man, well, he has a lot to put up with. At the moment I think I could be classed in with those mental females that should not leave the house or have any dealings with any other living thing until they have learnt how to behave.

I think there has been a little stress factor around the Ball as well, mainly because I am a head case. I need to buy shoes for the Ball and something to keep me warm but as I splashed out on Annie (Mac) this month money is a little tight. This is of my own doing so no sympathy can be given but I am a crazy ass female who needs new shoes...can you feel The Man’s pain. The other issue I have is what shoes shall I get? I can’t really walk in flat shoes without my stick ‘Dotty’ and heeled shoes come with their own issues. I would like to wear little slipper shoes so that I am steady on my feet but then what happens if my leg spaz’s out and I can’t walk? What happens if I wear small heels and then can’t walk. I am not completely sane right now so please don’t worry I will deal with this when I am not such a flakey weirdo.

So on another note I am doing something at work at the moment that I really like. In the I.T world we identify defects as BUGS and store them in a system called Jira. If you are interested in why they are named BUGS then have a wee read here - http://en.wikipedia.org/wiki/Software_bug and if you want to read about Jira here is so you can see http://en.wikipedia.org/wiki/JIRA. I am trying to sort them out in a more positive way, to try and demonstrate that although there are problems with the Applications we look after, the problems do get fixed. I am all about the positive spin at the moment along side improving the way we manage the issues that we have. In actual fact the problem we have mostly are issues and not BUGS it is just that they are wrongly named in JIRA. Blah Blah Blah, enough work talk.

Lastly check this out, I have joined this for a trail - https://www.graze.com/deliveries

 

Snippet Apology

Hey folks just thought I would add a wee note about my Blog post yesterday, I just want to say that The Man is amazing in nearly every single way so please don't read that post and think any different.  It was my problem with the situation and it was caused my inability in telling him how important it was to me.  I promised to be honest through this whole experience with you all and so sometimes I am going to be crazy, irrational, bossy, moody, stressy, bitchy and all the other things that most women are.  I just want you all to remember that I am one of the luckiest people in the world to have such an amazing man in my life and I definitely count every lucky star that we found each other.  I do sometimes wonder though if he is maybe doing community service or simply just doing 'Care in the Community'.

I have a very wise elder brother and he told me that yesterday's post might have come across a little bad so I am here to do, as I am sure I will have to do many times in our relationship...apologise.  To The Man and to all my readers, I am a hormonal, angry, over-senitive weirdo right now who is not dealing with any situation like a rational person and I am very sorry for that.  I will no doubt have more of these outbursts and The Man might get the brunt of them again but please take note...he is a saint and me, well, I am female.

I am at work just now and will be heading out to get some lunch in about 2 secs, so I hope you all accept my apology and I will write again later...bet you thrilled he he he!

Loves all xxxx

Snippet

So today is a rest day and we all know how much I enjoy them.  It isn't that I mind having the opportunity to recover it is just I find them frustrating because I have to stay still, I have to do as little as possible and it is difficult sometimes not to concentrate on the discomfort and pain.  I don't find lying down very comfy a lot of the time but as we discovered it is the best form of recovery for me.

I know that I am being silly but I have this issue with The Man and the way that we seem not to understand the importance of certain things.  Unfortunately nowadays we do not all live in the same towns where we grew up and we don't have our best friends just round the corner from us, therefore the internet is our main form of communication with those close to us.  It might seem like nothing to some but I use the tools available out there to make sure that those close to me, those I would like to keep in touch with know the important parts of my life.  This is a bit of a rant, sorry I can already tell this might sound whingy but I do think it is important.  The problem is, I can not add photo's of my life to Facebook (which is where I keep in touch with people) because The Man has an ex partner that doesn't know about me, officially.  Now I know many of you will think this is silly but unfortunately it is important to me, it is like someone has censored my life.  So to combat this I am going to stop mentioning him on here because if I am not allowed to be apart of his life I think he should not be apart of mine, until the time comes we can have a full relationship.  I think this is silly because we pretty much live together, but I am not supposed to have him as part of my life.  I know that the situation is difficult but surely as someones partner their Ex should not be constantly apart of their relationship.  I feel like I am dating The Man and his Ex and to tell you what, I am purely a one person girl.

I know I am being unreasonable in someways, I know that The Man is in a difficult situation and was with her for a long time but in the same breath, I am a girl who loves a man and I think the man has another girl on his mind.  That is possibly such a big deal to me just now because I am still not well and to be honest I am not dealing with things very well at the moment so apologies if I sound like a complete fruit loop, I can't tell you I am not a complete fruit loop.  It is difficult for me to rationalise things at the moment and I know that I can get a little wound up about things that aren't major issues.  The problem I am having with The Man is I don't want to feel like I am going to contribute to this other woman's pain and I don't want to get hurt myself.  All of a sudden I have my small little issue that doesn't really matter but has become huge problems in my life.

I have spoken a great deal about how this illness has affected me physically but I don't know if I have really touched too much on the emotional side of it.  I know that most people may start to read this Blog and wonder what benefit it has but to me it helps a lot.  Can you imagine pressing a 'Pause' button on your life right now?  Everything stops and you have no idea whether or not it will start again.  Dramatic you might think but I can't go to work 2 days in a row at the moment because day 2 begins so painfully and is so mentally challenging that I would be of no benefit there and here I am just frustrated and in pain with too much time to dwell on the things that get me down.  I feel like someone has built walls tight up around my entire body and I am trapped, I can't get out, I know all the things I want to do but I can't get out to do them.  The mental side of this illness is terrible, it is also really hard to explain to people because they can not see any physical signs (other than some people have noticed it in my face, hope that doesn't mean I suddenly get any uglier) but because there are no physical signs sometimes to the outside world I get self conscious that people will think I am making it up.  I know that this is just another thing I can stress about that isn't real but how do you stop yourself from doing that?

We found out that being anxious is a common side effect of MS.  I would never have said I was an anxious person but I have realised just how bad I really am.  Here are some things that recently have caused me a great deal of stress -

• Getting back to work
• Being constructive and productive at work
• Fitting back into the house and into my life in London
• Leaving my Mum and Dad again after 5 weeks down with them
• Relationship with one of my brothers (worrying about him)
• Missing my brother in America
• Not getting up to Scotland to spend time with eldest Bro, his beautiful wife and best friends
• Relationship with The Man
• Putting on weight because still not very active
• Set backs
• Not achieving
• Being grumpy
• The Man's friends not accepting me
• Not learning quick enough

As you can see just about anything can stress me out and give reason for my recovery to slow.  These are all things that can make me go a little mad and lose all reasoning.  This is an area that I know that I have to work on.

I should mention here that the Man has said he does understand me, he does understand why it is a problem and tonight he had that conversation with his Ex.  I honestly feel bad for her, I feel bad that I might in some way add to her pain over their split but they were over by the time we got together.  The Man doesn't want to cause anymore upset than he needs to so it was important for this conversation to happen.  Now this has happened I will not have to stress about it and hopefully this will not bother me again.

Wow, what a weekend

So I need to tell you about my weekend, sorry I haven’t written before but the whole exhaustion thing made me think it was a better idea to wait for today so I can tell you properly.  Saturday was lovely, we got up and got ready and headed down for me to get Acupuncture.  We got there on time and it was a weird experience.  I went into the room with the Acupuncture Doctor and he asked me some questions, then he asked to see my tongue and told me that I suffer from stress, which I totally agree with.  I lay down on the bed and he proceeded to pinch the back of my neck so it hurt and then he stuck a needle into the top of my scalp.  It was the weirdest experience of my life, he jabbed a needle into the left side of my neck and it hurt but I think that was the one that did all the work.  I have to say though that a mixture of the acupuncture and acupressure seems to have helped my back, I have not been in as much pain as during last week.

Later on that day we went to Madam Tussaud’s which was brilliant,  if you don’t know about the history behind Madam Tussaud’s you should read the history section here http://en.wikipedia.org/wiki/Madame_Tussauds .  The Man and I luckily were interested in all the same parts of the show which made going round fun.  Although I find activities tough at the moment when I am with The Man I enjoy myself, he totally distracts me from the discomfort and pain, I think everyone with MS should have their own version of ‘The Man’ and no they can’t share mine he he he!  I will post some photo’s because they are quite funny (well I amused myself he he he!).  Urgl and Engywook were waiting for us in a pub in Camden so after MT we headed up there to meet them.  They are so lovely, I have to say that my parents are like my best friends, I love every second I get to see them.  They had never been for a Lebanese meal so that’s what we did, Mezzes, if you haven’t tried you should try it out because it is lovely.

I had organised a taxi to pick us up at 9am on Sunday morning to take us to the Boat Show, so we were up and organised and out the door for 9.  On the way we picked up The Man’s dad, it was the first time they had all met so it was lovely.  Engywook and The Man’s dad got on brilliantly as they are both keen sailors, Urgl too but the men looked like they had known each other for years chatting away, exchanging stories.  It was a lovely thing to see our parents get on so well because The Man and I get on so well it stands to reason that our folks would too.  I think it is important to learn from your family because often they know best, I have definitely learnt over the years that my parents are very seldom wrong about a person or situation that I am in so ignoring them has become less of an option.  I am very family orientated so I should be with someone who shares those values and I believe The Man does, circumstances may have been slighty difficult for him but I believe that he believes it is as important as I do.

I must admit that the Boat Show was tough for me because I was quite uncomfortable but it was lovely to spend the day with 3 of the most important people in our lives.  The Man and I took it slowly and let the folks walk round in their own time, we saw some really cool things and some amazing boats.  To be honest some of the highlights of the day for me were the ‘Knowledge Box’ where we heard two speakers Mark Covell Olympic Sailor http://www.thedailysail.com/users/markc  now is an onboard photographer and Steve Cockerill ‘The Boat Whisperer’ http://www.roostersailing.com/articles/info_sheet_16_Rooster_Evening_Talks%202005_2006.htm.

The other highlight was sitting people watching with The Man, it is so interesting watching peoples body language, dress code and general behaviour.  I find people watching very interesting as I sometimes worry about what peoples impressions of me are as I often look as if I am drunk (because of my MS).  In the Boat Show it was obvious those who had recently come into money as they had more labels on them than a supermarket shelf, flaunting their ability to look incredibly cheap in expensive clothing.  The really wealth people there were very understated, in lots of amazing quality clothes but not a label showing, they were very interesting to watch.  I also loved it because of the people who were genuinely into sailing, the type of people that get real enjoyment from their hobby and although might not have money to splash around on the day, loved every moment of being around their passion.  I probably now sound like a weirdo peeping Tom but I promise I am not, years of having little money taught me to appreciate the activities that don’t cost the earth. 

I have had an amazing time this weekend and although I had an awful week last week, this week I can tell is going to be much much better.  I am a lucky girl once again, I feel loved, happy and secure and it is all down to those of you that help and support me, in here and in real life, thank you xxx