Catch Up part 2

8. Walking with WalkAide
9. Feeling like it's all going to be alright.
10. Feeling like I am properly back in the world
11. Inner Ear issues - Benign Paroxysmal Positional Vertigo (BPPV)
12. Holiday Feeling

Following on a little from yesterday I thought I should just finish my post.  I am going on holiday this week to Cornwall, off to see family so it should be lovely, but I might be quiet. 

8. Walking with WalkAide
Walking with the WalkAide brings tears of joy to me because I feel like I can walk and it is such a sense of being again.  I feel like I can reclaim of my place in the world, a world that I was slowly giving up on.  I know that some might read this and think once again I am being dramatic but I promise you that I am not, these are real feelings and thoughts and somehow, I feel less lost know that I can walk tall again.  It more I ever thought possible, I have hope again for my future.


9. Feeling like it's all going to be alright.
Hope is a funny thing and if I have learnt anything over the past few weeks is that hope can be easily misplaced.  I had hoped that my application for FES would be going through without much thought, because my medical team were so adamant that I would get it, and this hope with dashed with a DENIED!  I had hope that my purple/blue/white foot was a vascular issue and something that could be fixed but it wasn't it turned out to be neurological and that tore me apart.  I have felt lost, broken and alone, until I took control and changed my reality.  I looked for a solution to my problem and pursued it and it has changed my life for the better.  I also took control and stopped the medication (always check with your medical team first before doing so) and it has pulled me out of a depression that I could not identify properly on my own and was losing the fight.  I  have learnt that I really do make my own reality and other can not fix me, no point waiting for others to intervene and change me situation, I have to seize the moment and change it for myself.


9. Feeling like it's all going to be alright.
For months and months I have used a walker, I have used it as a tool to help and also as a barricade against life.  It is strange to explain to someone what it is like having to use something like a walker every time you leave the house.  It chips away at your confidence, even if you have made peace with it, or it did mine.  I am grateful that I have had Dylan (my original walker) and Blossom (my new lightweight walker) in my life.  I also feel great thanks for having Chorlton (my wheelchair) for when I need him.  These things were originally tools until I got better, but I didn't seem to get better, everything else around me seemed to improve but my walking continued to get worse, this terrified me.  I have made peace that one day Chorlton may become a permanent feature in my everyday life but for now I am not ready, I know I have some walking to do, I know that I can do it I just needed something to help.  I found it, we found it, it is brilliant.  I have so much hope for the future and where I know that this is not going to fix my problems I also know I have some more time left on my feet and I can change my reality for now and do more of the things that I want to.  I feel like I am not hiding anymore, I am going to take the world on, ahead on and brave it.  Life seems full of possibilities again and where the future may bring Chortlon I am going to have memories that will see me through those days.  Life does stop if I end up in Chorlton the challenges just change but what ever happens from here on I know I am stronger and will take them on.


11. Inner Ear issues - Benign Paroxysmal Positional Vertigo (BPPV)
I have been feeling really dizzy lately, whenever I look up or lie down or get up it sends me into a really dizzy spin and makes me feel really queasy.  After about 2 weeks of this I phoned Freya, my MS nurse and asked her and she said she thought it might be BPPV but she got me an appointment with my neurologist two days later.  I saw him and he also confirmed it was BPPV, nothing too serious just the crystals in my inner ear which tell you which way up you are had come loose and that was causing this horrible dizzy feeling.  I have some exercises to do to make the crystals settle back in the correct place.  I was very happy that I didn't hear thoses dreaded words ('it's neurological') instead I heard 'it is not MS related and lots of people have this happen but it can be fixed with some exercises' woo hoo! best outcome ever.  I honestly wanted to kiss my neurologist for confirming that.


12. Holiday Feeling
So in conclusion to this catch up post I am very excited about the future, relieved that my dizziness is something average and fixable and finally that I am heading off on holiday to Cornwall this week.  All round life is good!  I was just reading back and you must be exhausted with the highs and lows of these posts, I bet you wish I would make up my mind, am I depressed out my mind or am I giddy and ecstatic.  To be completely honest with you it is a mixed bag, one minute I am up and loving life and the next I am feeling positively horrible about my future and this disease.  All I can tell you is that with the ups and downs of living with MS I am grateful for what I have and I have amazing friends, a fantastic family, brilliant readers and a wonderful medical team so I am lucky in a million ways, a million ways but one.


Hope you all have a good few days, I will be quiet for a few days but promise to return soon.
Love to you all 
Jess


P.S Check the twitter feed to the right as I will tweet whilst I am away...if you are interested and I will update my Facebook page.
xxx

Catch Up part 1

You must be wondering where I have been and why I have been so quiet, the truth is I am having problems focusing my mind to write.  I am hoping to note some amazing things that have happened to me and also to let you know of things that have affected me.  I will first write a list of topics and then hopefully fill it out with some explanations.

1. It's not vascular...tears
2. Application for FES DENIED...tears
3. Turning 30...excitement
4. Birthday Party with family...very happy
5. Finding private clinic for WalkAide
6. Ups and Downs of whether to spend £2500 on the Walkaide
7. Feeling Broken...tears
8. Walking with WalkAide
9. Feeling like it's all going to be alright.
10. Feeling like I am properly back in the world
11. Inner Ear issues  -  Benign Paroxysmal Positional Vertigo (BPPV)
12. Holiday Feeling

So as you can see I have a lot to tell you about so please bare with me. 

1.It's not vascular...tears

Think I have already mentioned this but thought I would recap, I have what looks like a circulation issue in my left leg where my left foot goes a purple/blue/white colour and is deathly cold whilst the right leg is happily warm.  I was certain that it was a vascular issue and that someone out there would be able to fix it.  I went off to the hospital with The Man, excited that this might actually be fixable and possibly my walking would improve.  I was there for less than thirty minutes when I heard those horrible, dreaded words...'it's neurological', what I have learnt that means is, 'we can't fix that'.  So I got upset, I felt like the hope I am meant to have about all of this stuff had somehow been misplaced and I was still sick and unfixable.  

2. Application for FES DENIED...tears

On the Friday before my 30th Birthday (my birthday was on the Saturday) my physiotherapist phoned and told me that our application for FES (Functional Electrical Stimulator) had been rejected.  When she then went on to tell me that the application had been rejected due to 'red tape' I thought my world had caved in, it wasn't that I didn't need it, or there was something else, or that medically we could do something different, it was that there was no SLA...someone in an office somewhere, probably with 2 good legs had made the decision that I was not going to walk.  I lost it, I cried and cried and cried, I felt suffocated by my own life and I couldn't see a way out, I wanted out, I didn't want to fight anymore. 

3. Turning 30...excitement & 4. Birthday Party with family...very happy

WOW!  I couldn't believe it, my brothers and sister in law had come all the way down to spend my Birthday with me and they had surprised me with a bringing my best friend and her partner down and my niecewhich I wasn't expecting but wishing with all my heart that they could be with me too.  It was the best present ever.  To have them with me made my troubles seem far away.  We had my Grandparents, Great Aunt, Great Uncle, Aunties and Uncles, some of my cousins and their little ones, it was amazing.  We even got time to Skype my brother in America which was brilliant.  I had such a perfect day and I will treasure that memory forever.  Family time cures all the worries in the world, I felt unbelievably loved and protected from the troubles I was facing.  (I shall add some photos)

5. Finding private clinic for WalkAide

After the excitement of the party I was determined to sort my head out and the only way I knew how to do that was to sort this FES thing out for myself so I found a clinic that offered it and I contacted them and booked an appointment.  I think it was meant to be because the clinic I found was up in Solihull and we were off to Coventry that weekend so it all tied in, I think I took that as a sign.  I was so desperate for this bit of equipment to help sort out my problems, and it did, it worked.  we went to the clinic on the Saturday and they booked me in for another appointment on that Tuesday and I decided to stay up in Coventry with The Mans Mum and her friend, they kindly took me off to my appointment.  I tried it on and I was sold on the spot, the video's I posted about the WalkAide are from that appointment.  

6. Ups and Downs of whether to spend £2500 on the Walkaide

I knew how good it was and I wanted it so much there and then and luckily for me (I am the youngest of 4 and the only girl so very spoilt) my eldest brother had told me without any arguments he and his wife wanted to buy it for me.  So when I saw and felt what the WalkAide did I wanted it so much, so I did it, I bought it and walked away with it that day.  What a relief it was to have found it, felt the magic and then own it.  I hadn't walked like that it years and suddenly I felt like a human again, I felt like I could take steps and not have to watch my feet to make sure they were clearing the floor, it was amazing. 

7. Feeling Broken...tears

The extreme high of the day before hit me hard, I had got back to London late the night before and when I woke in the morning I felt grief, not happiness of having the WalkAide, grief that my life is about putting things back together with sticky tape and hoping it holds.  I pushed The Man away, wishing for his sake he would leave me and going and have a full life with someone who wasn't as broken as me.  I love him so much that the thought of what my life might become was again suffocating me and I wanted him to save his own existence while he still could.  My whole life seemed one enormous drama that I couldn't seem to see through.  The Man talked me down, telling me that in trying to save him from hurt I was hurting him, that he just wanted me, and he didn't see me as broken, he loved me for who I am, that the disease was not what he saw.  We talked it out and traced this dispair back to when I started taking Clonazapam (it is an anti spasmodic drug with a sedative effects).  We agreed that I would stop taking the Clonazapam and go back onto taking extra Gabapentin at night.  Since then I have felt much better, I feel happy, positive and alive.  The Man says he feels like he has his Jess back, all round it has work for us both. 

Got to go just now but I will continue this, I promise...we are just getting to the good stuff. 

Loves for now

Jess

Going into the East London Advertiser

30 year old, Jessica Webb from Shadwell was officially diagnosed with Multiple Sclerosis (MS) when she was 28 - after a prior misdiagnosis of Myalgic Encephalomyelitis (ME). 

After losing the use of the left-hand side of her body a decade ago, Jessica started having leg and back spasms and experiencing slurred speech, severe pain, cognitive problems and sensitivity to light, as well as suffering from poor sleep. She only partly recovered, before going blind in one eye a couple of years later through Optic Neuritis.

Slowly, Jessica regained most of her sight but started to have increasing problems with walking. After taking many falls and enduring dizziness amongst a plethora of other symptoms, Jessica visited a physiotherapist.

Commenting on her experience, Jessica says: “I went to a physiotherapist to see if he could help with my walking. He took one look at me and said “I can't help you. You need to see a neurologist as soon as you can”.  I saw one two weeks later and within a month I heard those four little words that changed my life forever… “You have Multiple Sclerosis.”

Jessica was diagnosed with Rapidly Evolving, Severe Relapse and Remitting MS which means she now takes daily medication, including Gabapentin, Baclofen and Diclofenac, self catheterises four times a day and sticks to a low fat diet. Other methods of coping with her condition include the use of a massage bed each morning and evening, which helps with the secondary symptoms of MS that contribute towards daily discomfort and pain, as well as monthly visits to a chiropractor.

She adds: “I am trying to teach myself CBT (Cognitive Behavioural Therapy) and Mindfulness to combat panic attacks, which were recommended by my counsellor. I also do stretches that the physio gave me and I attempt to stay as active as I can.”

Living with MS has meant that Jessica’s everyday life is completely different to before she was diagnosed, but she is keen to see the positive sides.

“My daily life does not resemble the life I had before I got ill but in many ways it’s a million times better.  Life throws things at you that you have to cope with and overcome but once you succeed in doing so, you look back and realise inner strength you would never have known you possessed unless faced with a challenge such as MS”, says Jessica.

As well as working in Central London for BSKYB as an I.T application support analyst, Jessica tries to help out wherever possible with online community, www.shift.ms in return for the support she received from them since her diagnosis. She will be helping out at the shift.ms stall with her partner Matt at the next MS Life event in Manchester this April and is looking forward to attending the research talks on offer.

Jessica said: “Being as proactive as I can about my MS is so important to me - anywhere I can gain knowledge or understanding is somewhere I want to be. MS Life is a great opportunity to meet and speak to others with MS and it’s a good place to promote shift.ms and my own blog.  Shift.ms has done so much in support of those with MS and it would be fantastic to encourage more people into the community.”

Eager to champion the work of others in the MS field on her blog, www.memyselfandms.com , informs others living with MS where they can get help and support, whilst Jessica also uses it to diarise her methods of coping day-to-day. Her spirit and gratitude to the likes of Access to Work, which made staying at work possible for her, are obvious and she is positive about the future.

Jessica added: “I once read, soon after my diagnosis that ensuring you have a good medical team is essential in dealing with MS. These words could not have been truer, and I would love for others to appreciate these words of wisdom. I also believe having a strong network of friends, family and where possible a partner is also important.  It’s easy to get into the mindset that you are better off alone and nobody understands, but I have found that even though people might not feel like I do, there is comfort in that.

“I would not wish MS on anyone and in return I know that those close to me would do anything to take this burden away from me, so I think it’s life's way of balancing things out. MS'ers find comfort in each other, sharing war stories, swapping ideas, sharing remedies, discussing medication and finally willing each other on - that is why shift.ms and MS Life are so important - they bring people together, from near and far and help us not feel alone in this struggle.”

End

Dr Seuss

Jess walking with Walkaide

Jess walking before Walkaide

Walkaid

HAPPY ST PATRICK'S DAY!

I have just been to a private clinic to see about a FES (Functional Electrical Stimulation) alternative because my NHS application was rejected due to 'red tape'. I can't wait for appeals because my walking is getting worse and it could never go through and all the time I am getting less and less mobile. So we went off to see this consultant up neat Solihull about something called a Walkaid, which is a cuff that knows around you're calf muscle and sends the message down to the ankle instead if waiting for the message to come from the brain (which it won't because of the nerve damage).

I spoke to my Big Brother the other night and he said very strongly that he and his wife would like to pay for it. It is amazing to have such support and kindness from my family. I honestly could not be luckier. As my best friend said, if love could cure me I would be the healthiest girl alive.

I am going to try it out this week and hopefully get it. All I want is to be able to walk, I want to walk with The Man and with my family. I have so much living to do.

Ta for now xxxx
Jess

Dr Seuss

"Congratulations! 

Today is your day. 

You're off to Great Places! 

You're off and away!"

Ranty McRant - Loose Politics

This is going to be a short post because I am so tired.  I had to come on and tell you how annoyed I am with our Government, they are a disciple group of people.  At the moment they are picking on disabled people for no other reason than I think they are too scared to take on other areas of society and I believe that they are systematically victimising the disabled because they are likely not to fight back as hard as others because their daily lives are a constant struggle.  I think every single person making these decisions should live with someone with a disability for a week, see how life really is when things are not as they should be.

I think Conservatives have convinced me time and time again that they are not fit to run this country and I will never vote conservative again.  I don't think this whole experiment of Conservative and Lib Dems is working or a good idea.  I would love to know more about it all but I get so frustrated when I listen to the radio.  I can not understand how a group of people who most probably have never owed money in their lives and have never actually had a real job (extraordinarily institutionalised) can even begin to get us out of a recession.  I am a believer in cuts, taxes and all the other things that could pull us out of these hard times but I don't agree with spineless schools boys trying to stay popular with the prefects (wealthy business, corporations and so on).

There are areas of our society that is rotten to the core.  The riots over the summer showed exactly what has happened in our country.  These are the types of problems people want to see addressed.  The Bankers and other people within the financial sector who still earn ridiculous sums but continue to fail us.  This whole idea of 'tax invasion' v's 'tax avoidance', how about we all pay our fair share and be done with it.  I do not think that the rich should be treated any different from the rest of us, they should not be taxed more but they should be forced to pay the same as everyone else.  People who are career benefit fraudsters should be sought out and dealt with accordingly.  This should not mean everyone on benefits should be treated as a criminal and victimised, as I remember it, you are innocent until proven guilty.

I don't know a lot about anything and this is just my opinion, which is based on radio listening, The Week reading and news watching so I am happy to say this post might be nonsense but it was in my head so I thought I should share it with you all.  I know I shouldn't be so opinionated and I do not wish to offend anyone that might read this.

Ranty McRant signing off
Till tomorrow
Loves
Jess

Looking back

Boss Man asked me if I had ever talked about me before this all happened, he asked if you knew, the me before I got sick and I am not sure you do.  I wasn’t always like this, I was once someone who thrived in social situations, encouraged everyone after work to head for a pint together, who went to gigs all the time, who jumped out of a plane at 15000 feet to All Around the World by Daft Punk, who walked everywhere reading a book.  I was the last one standing on nights out and the first one up to start a new adventure.  I would try anything once and only learnt lessons when they hurt.  I danced (badly) and sang (even worst) all the time, I wanted to see every inch of the planet with a back pack on and a penny in my pocket.  I wanted it all.

Some of the things I have done in my existence, I raised £1600 for Deaf Children by jumping out of a plane and it was one of the best things I have ever done and I think it will remain on of the best things I have ever done for the rest of my life.  I organised a charity event where we gave out prizes, played games, eat and drank.  I convinced my friend to join me and she did the jump and she loved it as well (even though she is terrified of heights).

I have walked up many Scottish hills and dance in the water at the tops.  I have sledged in the snow and jumped off waterfalls.  I am the type of person who likes to try new things, I want to experience life in all its glory.  I loved to organise things that my friends, nights out, comedy, gigs.  I love the theatre and made a deal with myself that I would see all the theatre productions I could.  I love going on holidays and before I got sick I went to America every year to visit my Brother and his family, I went round Europe with 17 crazy Americans, I write to everyone and anyone that will let me.  I went from hairdressing to I.T with a batch of illness in between.  I wrote diaries from when I was six, I hated school but loved to learn.  I moved out when I was young and owned a flat when I was 17 (helped massively by my parents & family).

I lived tough, loved hard and lost a lot throughout my 20’s, but every hurdle I have come across I have struggled over and I think that I grew slowly as a person.  I know myself that I didn’t want to grow up, I didn’t want to make decisions and I have all along very much doubted my own abilities, therefore have been slightly guilty of copping out of things I should have tackled.  I would sum myself up as someone who has always shied away from life in a way because I have feared failing, uni, career, relationships, friendships.  Somehow though, nearly all of these things have happened, and almost as if I have not truly paid attention I have a career I love, a relationship that makes the greatest love story in the world seem insignificant and amazing friends.

Every time I think of who I was there is a little piece of me who mourns her, but then when I think about it, the old me had a mouth, some drive and a lot of fear.  The new me is almost a little surer, I think I actually believe in myself more than I ever have.  This year has been the toughest experience I have ever faced and I have done it (not alone I might add), I set myself a few goals, to love The Man like no tomorrow and I still wake up more in love than I have ever been before, I wanted to get back to work and be a part of the team again and I am achieving this little by little every day, I wanted to document this period of my life so that I could keep it safe so that whatever life throws at me I know I can overcome it.

I will leave it there for now.

 Hopefully I will be back later

Love

Jess

This is a tough post and a tougher read.

I should tell you all that I had my leg checked out today and they found nothing Vascular wrong.  The pulse in my left foot was normal and although there is discolouration it isn't Vascular, they sent me up to have my leg scanned and that showed no clots (which I wasn't expecting there to be any).  I would agree that this sounds like good news but I felt a sense of mourning again today, I felt that I had lost the use of my left leg all over again.  I had almost convinced myself that this could be something that they could fix, that if they fixed it I would regain some use of my left leg, but hearing that the problems are neurological means that they can't help me.

It is difficult to deal with the pain, with discomfort, with toilet troubles of all kinds, with hands not working properly, with memory and concentration problems, with spasms and cramps, with being woken all through the night  but the walking kills me.  I watch people walk and I am honestly jealous, I am jealous of the ease that people walk with, and the little thought that they put into it.  I know that these are wasted emotions but it is difficult to come to terms with the fact that I will never walk properly again, I will never stroll down the street again, I will never run again, I will alway now be disabled.

Like every other issue I face with the MonSter I will conquer it, I will learn to deal with it and I will enjoy everything I have but for just now I am sad, I am mourning an existence that seemed so promising and now seems like a constant fight and the saddest part of this fight is I am not going to win it.  Everyone dies one day but days like today make me want to go to sleep and never waken.  That may sound like an awful thing to say but I said I would be honest and I will be, I have to tell you all how this makes me feel every now and then because I am human, I am a girl who is about to turn 30 and I have realised that I have an uphill fight a head of me just to stay stationary.  I am not fighting to get my walking back, I realised today, I am fighting to make sure it doesn't get any worse, and that is terrifying, that seems like a tall order to me.

Anyway I am not mizzing, I thought it only fair to share these thoughts with you.  I will get through this and I will be a stronger person for it, I am sure.  Giving up is not an option I have so the fight will go on.  Legs, Walking, Jumping, Skipping, Climbing, Balancing and all those other things that you probably never give a second thought to are all I can think about right now.

 I will go to sleep now and tomorrow I will waken to another day and that day will be better than today and these feelings will be a memory, stored in these words so one day I will look back and remember that even when I have down, dark days, the sun comes out again in the morning and those I love will be their to make me smile.

Good Night everyone
I love you
Jess x

Us...The Man & I

Costco and Foot

 think I should come and tell you about the white/blue foot I am getting.  Once again my left foot is not isn't playing the game, the circulation in it is sluggish and my legs have been completely different temperatures, this then leads to my foot going a white/blue colour.  This one is getting me down a little because I don't think it is a MS problem, which means there is something else wrong and don't want that.  I won't moan too much about it as I will just have to see what happens on Monday when I go to the Vascular Surgery.   

We are off to Costco to buy some booze for my birthday next week, I am turning 30th birthday and my Grandparents are having their 65th Wedding Anniversary.  The Man and I are going out to buy supplies such as wines, soft drinks and sweeties.  I am really looking forward to my birthday because I have always wanted to be thirty, I always thought it was a lovely age for a women to be, actually I thought it was a fantastic age to aim for and not grow up because at the ages of thirty you are meant to be grown up but you don't really have to be.

Anyway I will go and get on just now but I will try and write later, if not check the twitter updates on the right hand side of the Blog. 

Love

Jess xxx

Some Comedy I love -

Things that always makes me giggle.

Eddie Izzard 

Eddie Izzard

Glenn Wool

Steve Hughes

Steve Hughes