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Tuesday, 17 April 2018

My two year chemoversary....

Facebook has many uses, which is probably why a lot of people have stuck with it over the years, despite their data breaches. It can make life easier, like being reminded of friend's birthdays or inviting people to an event, rather than sending out actual invitations. One feature which is rarely useful, but does often provide me with entertainment from time to time, is Facebook memories. Usually I'm reminded of something dumb I wrote in 2007, but I was reminded on the 11th of April that it was two years since my first treatment of Lemtrada. The official name for this is Alemtuzumab, but this was rebranded when it was found that this drug was useful for MS sufferers, it also went up ridiculously in price, so much so that I'd be inclined to rename Lemtrada to 'Kaching!'

Anyway, before I go off on a rant about pharma and how immoral I think they can be, the treatment I had is a type of chemo, as mentioned in previous blog posts. I think of it as a wonder drug, and my life is unrecognisable from what it was two years ago. Two years ago just before my treatment I was at the tail end if an awful relapse. I didn't see how this new drug would help me that much, although my hopes were small, such as gaining the feeling back in my right hand side, and being less exhausted than usual.

I immediately noticed changes, but this was probably due to the steroids as they help with relapses. Then when the steroids left my system, despite feeling like I had a month long hangover, I noticed changes in gaining some feeling back in my right hand side, and being able to walk without tripping up over my own feet (I looked drunk whilst being totally sober). My cognitive function had also improved slightly, which is the symptom that has always bothered me, as it has made me feel pretty thick over the years.

This was only half of the treatment, so I went in for the second half in May/June last year over three days. I didn't notice a huge difference until the autumn, when my mood had vastly improved, and I felt genuinely positive, happy even. The fatigue was still there, then I think late October to early November I felt 90% there, fatigue disipated. I still feel good, and I can't quite believe it. I sometimes expect to wake up having a massive relapse, or wake up from a blissful dream, realising that nothing has changed.

I get the odd symptom, a bit of tingling in my hand or knee, for maybe 1 minute here and there. Interestingly it only seems to be when I'm in a humid environment, being in a hot, dry climate is definitely best for me, so my plans to leave the UK eventually are still on the horizon.

I think maybe having MS has changed me in a way. Although I've always thought that I've never taken things for granted, when your health fails you, that's when you truly realise how you need to make the most of your life (or I did anyway). I hope that none of you have to find that out. This is why I'm so focused on making the most of things like the potential of living abroad, and completing my degree, which should help me in being able to live abroad. My treatment should last me for a long time. I may never need another treatment for MS, and if this is the case then the only one I would want would be to repair nerve damage caused by relapses.

I'm a big believer that medicine helps save and improve lives, for instance I'm totally anti the anti-vaccine crowd. Mainly because one of my Dad's brothers died as a kid from complications with measles aged just 10, and the MMR vaccine wasn't around then, which could have prevented him from falling unwell. Plus not being vaccinated, you can be an asymptomatic carrier (you feel fine, but carry the disease), and vulnerable people such as the elderly or immune-compromised can fall seriously ill as a result.

Sorry for seemingly going off topic, but this is linked. I believe that medicine heals, but I also believe that diet and exercise can help complement treatments, so they can work alongside each other. I know that some people claim to have cured their MS with diet alone, but I think maybe they were lucky, and maybe their version of the disease wasn't as aggressive as it is for others.

Last year I had a huge overhaul of my diet. The previous year in hospital my blood sugars were through the roof (probably due to the steroids), but I thought that I'd lessen the risk by trying to lose at least two stone before my next treatment in hospital. I weighed about 12.5 stone when I decided to lose weight, having previously lost just over a stone doing the 5:2 diet (in 2011 when I lost my job I went from around 11.5 stone to 13 stone something in around six months!)

So, in February 2017 I did something called The 8 Week Blood Sugar Diet. It was low carb, low sugar, and 800 calories a day for 8 weeks. It was tough, but I over lost a stone and a half in ten weeks (I did an extra two weeks). I then lost another stone over a few months just by following the principles. In the latter part of 2017 I went back to 5:2 (500 calories two days per week), and 16:8 half the week (eating everything within an 8 hour window). I'm now in the nines, and a healthy weight. I had a few people giving me passive aggressive compliments, such as: 'Oh you look great! But I think that being in the nines is too skinny', 'You look amazing, but guys prefer girls with a bit of meat on them', but I won't let these comments put me off. I think that my current diet (aside from the odd glass of wine or bit of chocolate), definitely helps me in keeping my MS at bay. As does CBD oil, but this is expensive, and also not legal in every country in the world. I also exercise most days now: three times a week is a half hour HIIT workout, and two days a week is Yoga/Pilates, and I can notice the difference in my muscles already.

It's weird to think how far I have come in the past two years, and the fact that I'm planning on going Down Under for at least a year shows that my treatment (and perhaps to a lesser extent my diet), has been a success. I've been busy lately studying (of course), as well as organising a gig for my friends from Australia, and I'm due to be starting as a Volunteer Administrator for a local hospice. Life is busy, but life is good. It can be too easy to forget about the MS sometimes, but as much as I wish that it was never a part of my life, I think to be totally ignorant would be detrimental to my health.

Anyway, I'll leave you with this: Stem-cell lite?, a link to an article from someone else who has had this treatment. Health and happiness to you all.


Jo xx

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