Help Jacqui get life changing treatment
Hi I’m Jacqui and I was diagnosed with Multiple Sclerosis 26 years ago, just a few months after our wedding in 1990.
My MS has mostly been of the relapsing remitting type (RRMS) up until 4 years ago when it transitioned into secondary progressive (SPMS) and quite aggressive too. Before that, not that many people knew of the difficulties that I faced (the invisible ones) I buried my head in the sand, ‘got on with it’ and chose to try and ‘convince’ myself that I didn’t have MS. It’s very difficult to ignore though because it’s always there, chipping away at you piece by piece.
It chips away at your body, at your mind, and at your soul. Most of this can be hidden, so that’s great! However, 4 years ago when my MS turned progressive and aggressive things couldn’t be ‘hidden’ any more. My handwriting for instance looks like a 5 year olds.
The simplest things like trying to hold a pen and controlling it is a mammoth task and the only way to describe it is imagine trying to write with elastic bands restricting your fingers. All of this is invisible and I could write so much more about the invisible symptoms…incontinence etc…see where I’m going? I’ll spare you the details! I feel like a shadow of my former self.
Gone are the days where I used to play tennis and badminton competitively, and where I used to run 5 miles twice a week. It’s taken some adjusting to, and nowadays I have to think about every step I take. The route I take in the house has to be planned meticulously where there are walls and door handles to grab hold of. I can’t leave the house unless someone is with me, can only walk very short distances and for the most part I’m in a wheelchair. Therefore my independence is lost. I would just like a little of it back.
Incidentally I got a new wheelchair (a power chair) to use instead of my scooter a few months back. It’s fab! Never in a million years did I ever think I would get excited about a wheelchair, but there you go! I said it! At times I look at it and love it for allowing me to have a little bit of my life back and other times I hate it and could kick it…if I physically could.
As much as I hate being in a wheelchair, I am actually thankful for it too. I could go on forever about how MS affects me, but I don’t want to bore you to death. Simple things like having a shower is exhausting, and is the equivalent of running a marathon. Some days I can’t even put one foot in front of the other. MS does that and likes to surprise you and spring things on you. However, now I want to get my own back and spring a surprise on my MS!
Back in January 2016 we all watched Panorama on BBC1. It was about HSCT Haematopoietic Stem Cell Transplantation, which reboots the immune system. MS attacks the immune system. The treatment involves being in hospital for about a month for chemotherapy which gets rid of the old cells and immune system, and then puts healthy cells back into the body. This has had amazing results stopping MS in its tracks and many MS patients are now in recovery, or walking after being in a wheelchair before treatment.
Clinica Ruiz in Puebla, Mexico (see the above photo) has one of the best HSCT hospitals in the world, and they have offered me treatment in about 8 months time (the date is yet to be confirmed about 3 months before I go).
It costs £40,000 for the treatment plus £5,000 for infusions on my return to the UK. I would love for my MS to be halted and for it not progress any further. It frightens me so much…the not knowing what is going to be robbed from me next. The next stages are scary…even scarier than it is now and I do worry about the effect it is having on my loved ones, especially my two wonderful children. There are associated risks with HSCT but I am willing to take them. Under normal circumstances, I wouldn’t usually put anything about my MS or my feelings on Facebook etc. Until now only my very close friends and family have known how bad I am because there are no photos of my wheelchair, scooter, walker, crutches or stair lift on Facebook. Now I need to swallow my pride and put it out there. I need your support please to help me get rid of my MS. It doesn’t need to be much…anything helps, but I will be sooo grateful. I have fundraising ideas in mind, but if anyone can help out in that way, I would be eternally grateful and thankful.
Big hugs Jacqui x
It took some persuading Jacqui to get her to make her disabilities public, she’s always been a very private person when it comes to her MS and I still feel she’s held back. So to try and sum up in a nutshell putting it bluntly…there is a scale to rate your disability 0 being no disability and 10 being death. In the last 4 years she has gone from 4 to 6.5 the cut off point for treatment in Mexico is 7. Very scary indeed. This treatment would literally give her a future back.
We have a number of fundraising ideas up our sleeves. I will update as often as possible.
If you are still reading massive thanks once again for taking the time to read on.
Hope to see you all soon xx
Here is a link to the Panorama programme if anyone would like to see it…
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