A8 My Autobiography - July 2009 to September 2011

"All our dreams can come true, if we have the courage to pursue them"

MY AUTOBIOGRAPHY OF MS

The dates on the links below are when the updates to my autobiography / health diary were completed. The updates usually cover the time period since the previous one. There is overlap in what I wrote, as the health diary updates were originally written for a different site than this one. There are some specific topics which are named rather than dated, and these have been put in approximately when I was doing them / they occurred.

1996 - 2000

September / October 05 H

2021 Day to Day Reality

My MS Rollercoaster

Ups and Downs

Update: September 2009 to September 2011

Times flown again, so much so that this update for 2009 to 2011 is being done in 2012, it's being compiled by my brother, as the September 2011 to September 2012 update has been, as my world very changed now from where it was in 2009. My brother is drafting these updates and then checking with me that what he has put, based on what I’ve previously told him, is ok, I'm then verbally editing that. Hopefully what we get is something close to what I want to say. Mistakes are naturally his fault not mine! The information contained in this update mainly comes from notes I made on tape in the summer of 2011.

I need to say upfront that now in the Summer of 2011 that I have no regrets about anything, partly because I don’t have time for them as life is a living hell at the moment but also because it is not in my nature to be able to give up and regret even if I wanted to, I can’t! The future is not set by me or up to me but I will keep keeping going even though it’s very hard to do so, harder than I ever imagined it could be.

I think psychologically, at my core, I still believe I’m destined to get better, which would be my third miracle.

The first miracle was stabilising for so long through my regime of diet, + nutrition, + exercise along with getting enough sunshine. I still believe in this regime, though it is becoming more difficult to do, it has extended my life to the maximum and I have lived beyond my dreams and celebrated my life.

The second miracle was Marcus.

This third miracle will be extremely difficult to get, but I’m still hoping, believing it’s my destiny, after all I have already proved that there is life after ms as I have travelled the world as you will have seen in my previous updates, helped run a successful Internet business www.fairpice-mobility-scooters.co.uk and had a baby even though I only have half a womb, My story in the Daily Mail.

CCSVI in Poland

In late 2009 articles started appearing on CCSVI, chronic cerebrospinal venous insufficiency, about the research of a Dr Zamboni who was putting forward an argument about the link between blocked veins and MS and how this could be treated, how the veins could be unblocked and held open with stents. I could not find a scientific flaw, or major questions that need addressing in the initial articles, which for a new claim for MS is unusual, this made me check CCSVI out more.

Here are some important articles

Dr Ashton's original article that alerted me to CCSVI

CTV in Canada, report on CCSVI

http://ms-mri.com has a lot of useful info

A summary of the CCSVI situation in early 2010 (word document)

Now available in UK

I have more detailed medical information on CCVSI for medical professionals, which I was sent to give to them when I had scans but have decided to err on the side of caution and not upload and link them here.

Having researched CCSVI in depth, all the science seemed to stack up and I decided that it was worth considering for me! As it was new research that had not gone through full clinical trials it was not available through the NHS in the UK, or privately at the time, this meant having to go privately to the specialist centre for CCSVI, in Poland. This wasn’t a cheap option but Steve agreed with me that it was worth doing, so we went to Poland in June 2010.

In Poland they found that that my left jugular vein was 80% blocked, so this was unblocked and a stent put in place to hold it open.

Going to Poland was tiring, especially during the week of the operation but whilst there I visited Auschwitz, it was an experience which gave perspective to my life with MS, may something like that never happen again! After that Steve & I had a short stop over in Prague, which we both enjoyed.

Was it worth going to Poland? I think the answer has to be yes, as initially and for about 6 months I had less fatigue & about 50% more energy, which meant I could do more for and by myself, as shown by this article in my local paper. Unfortunately the treatment didn’t stop the ms progressing and after about 6 months I was as fatigued as before. I don’t know if this was because my MS progressed anyway or because the stent moved and the vein collapsed again or if both things happened. I didn’t have the energy to go back to Poland to find out.

Hospital for Rehabilitation

By the end of 2010 I was mainly living upstairs on the lower bunk bed. I could pull myself up on the wires of the upper bunk and then try and reach the things I needed from there. The amount I could do and the length of time I could do it for got less and less and incontinence was increasing, even going to Florida didn’t give me a boost as it often had, instead I found it a struggle being there. Back in Sheffield I could just about get to the gym and transfer myself to and use the power-plate. Around this time the idea of going to hospital for rehabilitation came up, for physiotherapy, psychotherapy, art therapy, music therapy etc. I chose to take this option in January 2011.

Hospital, rehabilitation, while the idea was good the reality was not so good because hospital meant hospital routines not my routines, I lost my balance of diet, nutrition and exercise. I lost my diet because the staff kept getting my meals wrong; I lost my nutritional intake because my diet was wrong. What about exercise? In hospital I got little exercise, except for physiotherapy and what I could do with hand weights, it was bad I lost the gym and the power-plate. If that wasn’t enough I found it very difficult to sleep due to all the noises that go in a ward, it doesn’t help that I’m a light sleeper anyway, so I was more fatigued. Even during the day a lack of silence or quiet meant a lack of peace of mind for me. All this didn’t stop the MS progressing, if anything the opposite was true, it accelerated its progression. All in all it was a pretty awful experience. After the hospital I couldn’t transfer myself to the stairlift or wheelchair.

Unfortunately for a number of reasons, including a slight delay in the building of my new downstairs bed room and wet room in a new extension to our house, I got stuck in hospital for several months, well it felt like being stuck to me anyway. Stuck because I wasn’t up to returning to the upstairs room and bunk bed.

It wasn’t good, but a few good things did eventually come out of that stay

1. A good friend called Carol who I met when in there

2. My new room & wet room

3. My PA, Salmoon

Salmoon came on the scene because for about a month between being in hospital and arriving home, I was in respite nursing home. The regime there didn’t suit me, but then any regime that isn’t mine doesn’t. I have been told, and sometimes I agree, I can be very demanding to care for. This is where we came into contact with Salmoon’s dad and he got talking to Steve and suddenly Steve had recruited a PA to work with me at home. Well done Steve and Salmoon’s dad that chat turned out really well for me.

The whole period has been very stressful for Steve, what with worrying about me, organising the extension to the house, bringing up Marcus and running the business Fairprice Mobility Scooters.

Back at Home

I’m back at home but that doesn’t mean that it’s easy, far from it, but at least I have more of my routine, help from Salmoon and more opportunity to sleep.

Me sleeping through the night, that is something which Steve wishes for, sometimes it happens but often it doesn’t. When it doesn’t it’s usually because of my leg spasms and my being unable to stop them and the pain that comes with them, but it can also be because I am panicking about my safety, I know the doors are locked but I can still feel isolated downstairs and need reassurance. Whatever the reason I often buzz Steve in the night, even though I try and wait for as long as possible before doing so, when I do so I disturb his sleep which isn’t good for his health or our relationship and its stressful for both of us.

The lack of care at night is a problem & social care hasn’t assessed it as being needed, maybe it wasn’t but it is now. Days, they are better and easier to deal with, but that doesn’t mean anything is easy. I go to the gym most days, as much as possible, with Salmoon’s help but even this is getting more difficult both in terms of getting there and in how much I can lift.

Music helps me keep going especially amazing songs sung by Mario Lanza, including Look for a Silver Lining and Walk on, You’ll Never Walk Alone. Good dreams help too, like when I dreamt that I climbed the biggest cliff in the world, I can’t walk but I climbed it in my dream.

Now I’m back at home I do wonder more about the why of things, I can’t believe all that’s happened to me is down to chance, it’s not up to me when and why things happen. I can be strong, I’ve been made strong to battle on, to never willingly give up, I can’t its not in my nature, there must be a plan for me, for when I am to die, recover, there is a reason I just don’t understand it, its all too mind blowing for me to understand. I wish I did know because life in this body can be so hard that I don’t want it, but being me when

I can’t promise I’ll be here for ever, as sometimes there seems not to be much hope but maybe that third miracle is waiting for me around the next corner.

I CAN’T GO ON, I GO ON

Other, non-me things

I’m not the only one in the family with health problems; my dad had a stroke at new year 2010 and was in hospital for over three months, from mid January to mid May. I did manage to visit him occasionally, which was good for both us. I visited him just after his sister-in-law, Nancy, passed away and he told me we should collate, relate and celebrate. Collate stories about her, relate them to others and celebrate her life, I thought wow that’s so true, its great, spot on dad you’re a genius!

Marcus started school in September 2010, how quickly he’s growing up at school already!

In Summary

I’ve had a remarkable life, I‘ve lived life to the full. Just thinking about what I have done it is quite beyond any dreams I had, I’ve

Done a Skydive : Done a Hang-glide : Set up a Internet business : Been carried round Snowdon by Policemen & Bus Drivers :

Kept my health going through Diet, Nutrition, Exercise (Swimming is best then the Gym) and getting sunshine (all these are best in controlling MS) :

Been to Poland for medical treatment : Become a home owner :

Been on holiday to Cococabana in Rio, Iguassu Falls, Galapagos, Easter Island, Mexico, the Equator (Ecuador), Maccupiccu, Florida, Everywhere :

Met Mr (W)right : Been proposed to at Angel Falls : GOT MARRIED

Had a miracle baby I never expected (Pregnancy was great against MS but the baby bugs which followed were the worst) :

Stayed Alive !

What’s next?

Who knows, I certainly don’t, but keep checking back for more updates as I, my family, friends and you find out