I was diagnosed in 2000. To be honest, my body hasn’t worked well since 1992, when I had a prolapsed uterus, due to the catastrophic failure of my pelvic ligaments.
I had a hysterectomy and thought, good, that’s that then.
My knees had other ideas. The meniscus cartilage was being worn away bit by bit and now,I have very little and an awful lot of osteo-arthritis pain.
So, when I was diagnosed with MS, I wasn’t devastated. I wasn’t shocked, but I was quite surprised, as the diagnosis was very quick – possibly one of the most rapid diagnoses ever. It was a correct diagnosis.
For the next few years, I had the classic Relapsing/Remitting experience, with sudden relapses and a few months of recovery, followed by a short period of wellness.
I started Rebif (beta-interferon 1a) and it worked very well – in fact, I’m still in the RRMS stage and still on Rebif and it still works. I’m lucky.
It takes a while to work and I continued to have some relapses for a couple of years after starting it and then they stopped. My next bad relapse was in 2005 and it lasted for several months.
I had another in 2009, when I had moved to northwest Spain and had run out of Rebif. The after-effects of that relapse are still with me, rather like nasty scars. My right leg is worse – stiffer, with more spasticity and my bowels are a bit slower.
I also take LDN (low dose naltrexone 4.5mg per night) that I buy from my local farmacia once a year and make my own up from full strength (50mg) capsules. The LDN has helped my bladder function so much, that I have a normal bladder now. Pre-LDN, I had urgency and also odd bouts of incontinence. I don’t have these symptoms now.
So, here I am, with a dodgy right leg that hurts like hell after about 10 minutes of walking, lazy bowels and pretty wacky balance problems.
I was a classical singer with a good sized, very well-trained voice. I didn’t sing for 9 years and last year, started to rebuild my voice, doing hours of exercises and it came back. I was overjoyed. I’m looking for an accompanist – someone to play the piano for me, but I haven’t found one yet.
I never forget that I have MS when I sing. For some odd reason, it’s there all the time, no matter what I’m doing or singing.
Since the middle of March, I’ve been playing the violin, which had been a gift from a very kind and generous friend. It’s been interesting – a bit painful for my poor husband and for the two cats, but slowly, the technique is returning.
I had played before – as a child and then as a student and so it was a task of retraining, rather than starting from scratch. At the same time, I began to practise the piano for an hour a day as well.
Those two and bit hours of musical practise are all-absorbing. My piano is a good one – more by luck than great judgement, with a warm and pleasant tone and an easy action. I play J S Bach Preludes and Fugues and Mozart Sonatas and it’s a wonderful distraction for me.
As someone with MS, I tend to be easy on myself. I don’t get cross when I’m not progressing, I just keep plugging away.
I received some Amazon vouchers for my birthday and spent them on violin tutor books and exercises and music and then waited for Fedex to deliver the violin. It eventually arrived and I started the extreme aural torment.
I have a bit of wrist pain after about 20 minutes, but this passes off and I take a break and restart the exercises.
The good thing – the really, really wonderful thing is that when I practise both instruments I forget that I have Multiple Sclerosis. The muscle-memory has come back, I get fatigued, but not too badly and I can play quite well now and it’s absolutely wonderful. Two hours off!
ps – I used to have bad cognitive fatigue, but this isn’t as awful as it had been – through long, patient practise sessions, gradually building up the cognitive stamina and also because I stick to my diet. I am at high risk of diabetes and so, on doctors’ orders, I eat a diet that is low in carbohydrates. I also have a problem with gluten – and since cutting out gluten, I have had much less fatigue, both physical and cognitive. It’s an effort to stick to the diet, but worth it due to the increased quality of life.
A gluten-free doesn’t work for everyone. LDN doesn’t work for everyone and Rebif doesn’t work for everyone who qualifies. Never listen to anyone else with MS – or more dangerously without MS, who tells you that there’s nothing you can take or eat that will make a difference. There are many people out there on the internet who believe that they have the answer to MS. Many of them don’t have MS themselves, but believe that they are right. They aren’t.