Being a Winner!

Beki asked me to write something about not having to give up what you want to do because you have a disability, and I thought that this was a great idea.  

I will start by telling you about what it was like when I finally realised that I was disabled.  I felt like someone had stolen my life, I felt like my life as I knew it was over, I was scared and in mourning.  It wasn’t until I had truly discovered that most of this was in my head, all these thing I believed about disabled people had in a way built walls up around me, I had made my own prison.  I had to realise that the only thing holding me back was me and my perceptions of having a disability.  People talked about and told me to accept or come to terms with what Multiple Sclerosis had done to me, neither of these things I would later discover meant anything and what I really had to do was learn to be me, learn to find ways around my problems and learn to laugh at where life had taken me.

Through this little post I will tell you some things that I have achieved since my walking has deteriorated, my body has weakened but my spirit has alway prevailed.  The first thing I will tell you about is my need to get back to work, it meant everything to me and after being signed off because of a nasty relapse and ending up in a wheelchair I made it back to my job in the centre of London after just 6 weeks.  I went out with my family and friends in my chair, being pushed kindly by them until I was strong enough to get up and then I walked with my three walker (Dylan).  I haven’t made it back full time yet but I did make it back so I am proud of that.  People suggested that working in London would be too hard, getting to work would be dangerous, and a million other horror stories.  Instead of listening we moved closer to work making the journey easier and safer and I go in as much as I possibly can.

Secondly, I have travelled this year as much as any other, from America, Austria to Spain.  This came with hurdles as when I flew to America I was still in my wheelchair but going to Austria and Spain I had managed to walk with my walker.  We found that Special Assistance was the way forward and made travelling 100% easier than when I was able bodied.  I have met cabin crew, pilots and ground staff who have all been amazing, helping to eliminate any stresses I might have had about travelling with a disability.  Even on the rare occasions that I have met people that haven’t been so kind the others in these situations have made up for it ten-fold.  Here is a picture of me and Dylan in Bratislava ....

Definitely think that Dylan brings something to this statue he he he!

Dylan and I hanging out next to the biggest pot plant in the world! 

The next thing I wanted to show you is my first trip in a helicopter, it was absolutely amazing and although getting to it was a little challenging, help was required from The Man and my family to get into it, it was definitely worth it.  Here are some of pictures for this adventure...

Next is the biggy, I am going to tell you about my grand plan and I know you are going to think I am crazy.  I set myself the challenge of completing the Great North Run (13.1 miles) and due to the fact that I can't walk very far at all and always use my walker Dylan it seemed like an enormous challenge.  I decided though that now I have this disability I can cut my own shapes in life so thats exactly what I planned to do.  I came up with the plan to do a little each year and try and better myself every year, do more and more until I can walk the entire race.  5 years is my goal and this year was my first.  Here are the photos to prove it...

Not sure what happened to my face, sorry to infect your screens with it.

Ghost town, last one over the line but still smiling.

Podgy bum on deserted motorway.

I guess the point to all of this is to try and show you that nothing has to hold you back.  I realised that things might be different when you have a disability, but life doesn't stop.  Just because you have different challenges to most people doesn't mean you should give up on what you want from life.  I think having a disability has made me appreciate the things I have managed to do.  I have to take life a little slower than I used to but I think it gives me the time to stop and see what a beautiful world we live in.  To think there was a time when I thought my life was over because I have this disability makes me sad, I now realise that everything I do now means more to me because I over come challenges everyday, I have decided that this simply makes me a winner every single day!                          

Leave me some comments if you like my post, it will make me feel even more of a winner he he he!

  

Big Post....to follow

I am writing a big post for shift.ms that I will publish tomorrow night.  Sorry have to sleep now but will be back tomorrow.

Sleep tight
Jess

Stress and MS.  I have a problem at work at the moment and it shouldn't cause me so much stress and anxiety but it does.  I have someone at work who just stresses me out, they seem to think that because they have a degree it makes them better than all of us that don't and I want to just stop there and say something...who do they think paid for their degree?  I think if people get snooty at those of us who don't have degrees, I would like them to stop for a second and think about those of us who were out at work paying taxes, making it possible for them to study for half the price.  I hate when people look down at me because I don't have a degree when they have a pointless degree that they are obviously not using in their current role.  I also hate the need to rush to management when ever they are questioned about something, I would say working in a team is obviously not taught in university, or for that matter any kind of life skills.  Ending an email for example with an exclamation mark when discussing a work matter is rude and confrontational and that is exactly how I would take it, might sound silly but working in a team that deals with lots of different departments these things matter.  Anyway I am going to stop talking about it because it is making me stressed and I am trying to rest today, I have been up all night, every hour and I am exhausted.

I am finding this infusion tough, I feel horrible, I am sore, sleepy and just want to cry.  I know that it will pass and I will feel better but I don't right now.  MS is like the 'Gift that just keeps on giving'.  Just when I think I have got a handle on things more stuff happens, it is like trying to stand still in an earthquake.  At the moment my balance is terrible, I am falling over lots in the house, having to hold onto things to steady myself.  The walking side of things has gotten worse but I am not going to panic about this, I will just have to keep my fingers crossed and hope the Tysabri does it's magic soon.  Although I have felt bad again lately I have to remember how lucky I am for being on Tysabri, it has been pretty straight forward for me getting on it and I have heard so many people who have had a nightmare getting on it.

Right I have to go to bed now
Sleep tight
Jess xxx

Infusion No.2

The Man has sold his house up in the county lands and this weekend we went up and cleared out his stuff, we have put a lot of the stuff into storage and brought some of it home.  I have to say that I am so excited to have the comics home here, it was like we were destined to be with each other, he has a huge amount of comics and I love him all the more for that.  It was tough moving the stuff because I couldn't help too much as I don't have enough balance to life things, I have the strength to life things but I can't walk holding things and even passing things caused me to fall over so I busied myself with bubble wrap, wrapping up the breakables.  It is frustrating not being able to help as much as you want to but trying to help too much and over doing it just causes stress for The Man so I did what I could.

I have been completely lost in the magazine 'The Week', it is a current affairs and I love it.  I got a free subscription for 6 copies and because I loved it so much I have signed up for another 12.  The problem I have is, I just don't have time to read it all before the next ones arrive, it is mental.  One problem I have reading current affairs is that I don't retain the information I read, I love it but then I forget it which is annoying but it does give me something else to focus on, in my recovery, noticing how I recall some of the information.  If you are interested then here is the website - http://www.theweek.co.uk/about-the-week/

I had my second infusion today and WOW! it knocked me for six (made me feel exhausted).  The infusion was at 10am so The Man dropped me at the hospital on his way to the storage unit.   I was the only person in there today, which I have to say was nice, it was good to be able to put my music on and read my magazine.  The infusion went well, my MS nurse came into see me and we talked about getting a letter signed by Dr Elrington, for Access to work.  I was out by 12pm and all was good, I went round to meet The Man, who was just round the corner at still at the storage unit and we came home together, I felt absolutely exhausted.  I got into bed and the next minute I woke up and it was 6pm.  I found this last time as well that for a couple of days I was just completely wiped out.  Fingers crossed I will get that much loved energy boosted on day 3 though, I am excited about the future still.

Well I should sign off now and go to bed, I have a headache that I got last time as well and I think I need some more rest but I will be back tomorrow.

Love to all
Night night
Jess

Access to work

Once again I have woken up with my head full of things I would like to tell you.  Yesterday I had an assessment from Access to Work and it was amazing, my assessor was absolutely lovely and made me feel completely at ease, we talked for about and hour and a half before he gave me some idea's that he thought I would benefit from.  I have met two people recently through dealing with my MS and I have found that their attention and understanding of what I am attempting to tell them has been amazing, both these people have had their own disabilities and I think this opens peoples minds to listen to what your staying about your own difficulties.  Laurent, my assessor said something very helpful about the panic attacks that I have been having, he told me to identify when it is real panic, such as getting on a bus with poor balance and not being able to find a seat, and therefore being in danger to emotional panic which happens when I am not in danger.  I think this is the best way anyone has ever spoken about my panic towards different situations, trying to understand why it happens to me and then trying to deal with it has in itself caused a lot of anguish over the months.

The things that he said that Access to Work could possibly help me with -
Trackpad - instead of a mouse so that it is easier to use my computer
Noise cancelling headphones
Read back programme - to read emails and documents to me
Narrating programme so it will type when I speak
Dictaphone so that I can take notes in meetings and have time to play them back and type them up and also to generally make notes for myself.

He will send me out a report containing all other this information and how much they will contribute and hopefully my work will fit the rest, if not though I will fit the cost as it will make my working life so much easier.

Love for now
Jess

I am going to get better

I know that I am always telling you how sick I am and how tough it is so I thought I would change tactics and tell you how wonderful my life is outside MonSter (Multiple Sclerosis).  I have the most amazing man in my life, for those who know me you will know him as The Man.  I haven't told you lately how much I absolutely adore him and what he has brought to my life since entering it in 2010.  Although we have only been together a short time I feel like I have always known him, I feel like the universe lead us to each other and I will be forever grateful for that.  When we met we were both going through a tough time in our own lives and we became friends whilst listening to each others woes and drawing strength from our new found friendship.

If you had put The Man and I in a room you would probably have never predicted we would have become friends.  On the surface we are very different but underneath we are almost identical (no I don't mean physically, I mean in the mind...naughty reader, giggle all you like).  I felt like a little girl with a crush, liking someone so different was strange but I hid it.  He came to my neurologist appointments in August and was there when I was diagnosed which meant the world to me but still I couldn't tell him how much I had fallen in love with him.  It was later in the year that I finally told him how I felt and to my absolute amazement he told me he felt the same.  I thought all my Christmases had come at once and won the lottery all on the same day.

The story just keeps getting better and better.  The one thing that would have driven most men away has made this relationship more than I could ever imagine.  The Man has been through everything with me and has never thrown in the towel and said it is all too much.  Hopefully that will never happen and with my new Meds I will get better and better and we will live a happy, long life together.  I'm excited!

GNR pictures

I have so much to tell you all about and I know that I have been rubbish at writing my blog and for that I am so sorry.  I have so much to tell you, I have lacked the inspiration to write lately and I think it is because I have been feeling sick again.  I am hoping that the next infusion will make things even better and help me focus a little more than I have been able to lately.  Fingers crossed...onwards and upwards.

Photo's of the Great North Run, as promised.

I have to say The Man is a good sport and lets me do still things to him...

Matt R (my beautiful cousins husband), Nik Z (one of the bosses from our work), The Man and me.

A butt load of people...54,000 to be exact!

The amazing Red Arrows (a month after one of them died in action, his widow was running in the GNR)

Feeling the pain but still smiling

Dragging my left leg and feeling the pain (oh and showing off my fat bum, sorry)

Chez and I, very proud of her for doing it in 2hrs 37mins, it was her first half marathon and she has only just taken up running...she 'did it right'

GNR part 1

Hi everyone, I thought I would write a quick post and let you know that we survived our adventure on the Great North Run.  Due to the fact my legs have been getting worse over the past few weeks and even the physio was shocked at the deterioration in just a week I was going to Newcastle to attempt to do as much of the run (walk) as I could.  I had no illusions that I would even come close to finishing it but I wanted to go, take part and start the adventure that I am hoping to complete it within 5 years.  I know that you will all think that I am nuts but it is important to me to be involved and also to raise money for shift.ms.

You would think that taking part in this event (half marathon) it would be the walking that would stress me out to begin with but you would be wrong, it was actually the fact that there was going to be 54,000 people there taking part and seeing as I have not been able to go into a supermarket without having a panic attack it is safe to say I was worried.  my main priority was to get through the crowds and get to the starting line and both of these I achieved.  I will continue later but I have to go to work now, I will also add some photo's of our adventure.

Take care
Jess xxx

GNR

One day to go before the Great North Run!  Sunday The Man and I will be attempting our first half marathon.  Due to my legs getting worse and the new development that I have Arthritis in my left leg I am hoping to do as much as I possibly can but I will not push it too hard.  I believe that the Tysabri has helped to mask the recent relapse and although I am extremely grateful for the relief that it has given me it has also hidden what was going on inside.  I went to see the physio the other day and she was shocked at the deterioration she could see in just a week.  Not that this is going to stay, because I will not allow it, I am going to get my walking back and I am going to eventually be able to walk without my walker.

BE BACK AFTER THE RUN HOPEFULLY WITH PICTURES AND THE WILL TO WRITE xxxx

love to all
Jess

Million Dollar Quartet at the Noel Coward Theatre

Million Dollar Quartet on The Alan Titchmarsh Show - April 2011

Million Dollar Quatet

Sorry I have been rubbish once again, as you could probably tell from my last post it has been a little hectic this end.  I just wanted to let you know that I am ok, I am coping with the HECTIC schedule but so it is all good.  I apologise for not making to write time at the beginning of the week, I had problems with my hands, I couldn't pick anything up or type and they were unbelievably sore, but they are better now and I am good.

We went to see Million Dollar Quartet...it is brilliant!

Speak to you later

100 YEARS / STYLE / EAST LONDON

1 Year old Blog

I am writing to distract myself from the terrible pain I have in my hands and forearms, they feel heavy and really painful.  I have been off work today on a 'rest day' which has literally meant that, without the use of your hands it is difficult to do just about anything for yourself.  I am not whinging, I have been frustrated today but I am grateful for the few days of relative normality.  I know that Tysabri isn't a miracle sure and I will just have to ride the rough with the smooth.  As far as I have read it is takes around 6/7 infusions before you see last differences so I am looking forward to that day.

I have had a lovely weekend, The Man's Dad and his wife were here from Austria, we all went out for a lovely Indian Meal on Friday, The Man drove up to Keswick for his friends Stag Do and The Man's Dad and his wife went out for the day with his sister and then came back and we ate together and had a lovely chat.  I absolutely love spending time with his Dad and E (his wife).  It is lovely that they came to stay with us and I love that they will come and stay with me even if The Man isn't here.  The Man drove back on Sunday and we went to Stamford Bridge (Chelsea Football Club's grounds) and went to a pub for dinner with my Big Brother.  It was lovely!

I love that I am getting better and I know that I have to be patient.  I want to walk freely with The Man, I want to walk up Snowdon with him, I want to make it up Ben Nevis and I want to dance.  I think I have said to you before my Brother in America says the song 'I hope you dance' reminds him of me.  I love that song and I want to dance, I want to feel free of the MonSter and I want to dance again.

Night night for now.

Loves
Jess

P.S Yesterday was the year anniversary of Me Myself & MS, I started on 4th September 2010 and in the past year we have had over 18,000 page views, so Thank you everyone.

Tired Girl

Hi everyone, I have been meaning to write to you all day but weirdly I have had so much in my head I haven't managed to sort it into constructive sentences.  I have been watching Being Human, it is British show about a Ghost, a Werewolf and a Vampire sharing a house in Bristol, I love it.  I have also spent today talking to The Man as he was doing his massive drive up to a stag do.  It is weird because I spend so much time with The Man and when he is away, even if it is just for a night or a couple of nights, I really really miss him.  I miss his company, I miss cuddling up to him, I miss making him dinner and telling him stuff, I miss him busying about or watching the telly.  I think it is strange because my whole life I thought I was missing adventure from my life, I thought I should be screaming around at a billion miles an hour with someone searching for thrills and excitement.  I never thought that I would find those thrills and excitement in a good Man, I never thought the excitement I was searching for was in the life of someone so amazingly kind, generous and loving.  I am a very lucky girl and I am looking forward to the future again.

Anyway I must retire and go to sleep, my little eye are fighting to stay open.
Sleep tight everyone.
Jess xxxx

Busy busy Bee

Just sitting waiting for The Man to come home, he is out picking up his Dad and his wife (that would be his Dad's wife, not his).  They are staying with us for a couple of nights which will be lovely.  Unfortunately for The Man all have this has come at once so tomorrow he has to drive 300miles up the country to go to his friends Stag Do.  I hope he has an amazing time, he deserves it after that crazy drive and then 300 miles back on the Sunday.  Mental I know but one thing I will say about The Man is he is dependable, if he says he will be somewhere come hell or high water, he will be there.

This next few weeks we have a pretty hectic schedule -
Friday 2nd - Sunday 4rd - The Man's Dad and his wife are staying
Saturday3rd - Sunday 4th - The Man drives 300  miles to go to a Stag Do
Sunday 4th - My Big Brother is coming down and stopping in to see me and The Man, for Dinner
Thursday 8th - Tuesday 13th- The Man's Mum arrives for 5 days
Friday 9th -  we are going to see a Musical with The Man's Mum
Saturday 10th -  possibly going to Coventry to see The Man's Aunty
Tuesday 13th - Wednesday14th - My Big Brother & his wife are coming to stay
Wednesday 14th- Thursday 15th- My Mum and Dad are coming to stay with us over night & we are going to see another show
Thursday 15th - Seeing my friend Mumma P who is over from Australia
Saturday 17th - Drive up to Newcastle and meet up with Cousin
Sunday 18th - Do the Great North Run (if you fancy sponsoring us please donate on (http://www.justgiving.com/Jessica-Webb82) 
Monday 19th - Drive back to London and having a Bed delivered


So as you can see, the next few weeks are crazy mental, but I am ready for the challenge, I am looking forward to the adventure.


Better go now because we are going out for a meal in a mo and need to get organised.  


Loves  xxxx

Reach

This song makes me smile, thought I would share it with you xxx

Positive

My cousin sent me the story below and it made me smile this morning.  I am just getting ready for work, I am having a late start because I am having another bit delivered for my shower step, it helps me get in and out of the shower as the step is quite high.  So I thought I would write to you all quickly and let you know how I am today.  I am good!  I feel better than I remember feeling for such a long time, I know that this is to do with a number of things, like the supplements I am taking -
Vitamin B Complex
Vitamin D
Vitamin C + Zinc
Multivitamin
Cinnamon
Turmeric
Total Neuro
DSF (DeStress Formula)
Omega 3
Chlorella

I am also taking Gabapentin with helps with my neurological pain, and have made a big difference in my life.  I am liking this one, although it did make me feel rubbish to start with, and can make me have dark desperate thoughts.  I have Baclofen which I am trying not to take, just because it is a muscle relaxant and I think it makes me spaced out (yep folks, more spaced out than usual).  I am thinking about taking it though as it will help with my spasms.

I honestly feel better than I have felt in possibly years, I am also feeling positive and ready to take on the world again.  I am so happy I could burst, if this medicine has helped me but just relieving some of the fatigue the other symptoms I have are easier to deal with.  Once I sort my bladder out and hopefully my walking improves I will be the happiest girl alive.

I thought I would add a picture of the healthier Jess -

Onwards and upwards from here folks.

Loves for now
Jess

MonSter Child

My Daddy mentioned something to me yesterday which I think is quite true, my Blog posts have been kind of miserable lately.  I am finally on to a good thing and I am still whinging so apologies for that, I don't want you to think I am a misery guts.  I used to tell you about me visualising MonSter as if he were a small child, trying to get attention, well I just wanted you to know that I still do see him as that -

I think in my head he had grown in my mind from a small MonSter to an enormous presence in my life.  I had allowed him to completely consume my life but I am regaining some control again.

I feel as if someone has handed me another ticket to my favourite ride and I am desperate to board again. When I had a chance at life before I think I might have taken it for granted, I might have wasted the health that I might once have possessed, this time I plan to do it differently, this time, I plan to 'do it right'.  I am planning to grab this new life I have been given with both hands and love every second of it and being with The Man is a mighty good start, having the amazing friends and family that I do again is a pretty good place to start and also having a job and flat I love, all things considered I have a great life to rejoin.

I am absolutely love my new found freedom that Tysabri has given me, I have only made it this far with the love and support of all my family, friends and of course The Man.    I am now going to go enjoy some of The Man's company and BSG (Battlestar Galactica).

Signing out

Love to all 

Jess x