My MS journey – so far. It’s purely mine and mine alone

It’s my birthday this week. Twelve years ago, I was coming out of a prolonged bout of Multiple Sclerosis attacks and was exuberantly happy and thankful.
I was diagnosed in 2000, with possibly the quickest clinical diagnosis ever, but it was correct and I do have Multiple Sclerosis (relapsing/remitting flavour).
I’d had a lot of steroids and looking at the photos of my 40th birthday party, you can see my round face with delightfully shiny red skin, all signs of too many courses of Prednisone.
I’d had a course of intravenous steroids at diagnosis, three days of mega dose and then a tapering course of pills. A month later, I had a dreadful relapse and had a course of 500ml steroids, which wasn’t enough and I became even more ill and had to go back to Singapore for another three days of mega-dose steroids.
I was pretty ill – doubly incontinent, numb from the waist down and I mean epidural level numb and could only shuffle a few steps.
So with thanks to the partners at my husband’s office, who very kindly paid for me to start beta-interferon (Rebif) and with many thanks to the gods of whatever, I was feeling great by March – but looking like an inflated balloon. Well, shit happens, as my friend said at the time and he was correct.
Ten years ago, we returned to the UK from Jakarta, Indonesia. This was a huge change for us, but we coped somehow. We didn’t always cope very well with the changes, but ten years on, life is pretty good. Not prosperous, but not living in a cardboard box either.

The first few years of living in England again, after so many years away in Asia were difficult. We were managing to keep ourselves out of debt and we’d rented a house with enough room to store our stuff. The stress was another matter entirely, but stress, like shit happens.
My MS symptoms had changed – I now had nerve pain in my lower limbs, which would start its tingling, thrumming activity whenever I stopped moving.
My eyes started playing up, losing their focus after five minutes of walking and I’d feel totally drunk and unable to judge distance or height. I found that the fluorescent lighting in supermarkets very difficult, exacerbating the focussing problem and making me feel nauseous very quickly.
Thank goodness for internet shopping!
I became housebound, preferring to stay at home than to venture out and it was difficult for other family members to understand this.
One day, at the GP practice in 2006, the nurse suggested a scooter and to my surprise, a great wall of resistance reared up – a huge, mental cry of NO! and I started to live a different life.

Why I had this massive surge of feeling, I don’t know. Maybe it’s because my mobility was already compromised by a very nasty knee injury – caused by the MS, which resulted in my lateral leg ligaments became very tight and short and I could no longer bend my knees. The right knee was very badly affected and I knew that in order to stay mobile, I’d have to work at it and I had been told over and over again by an orthopaedic specialist that I had to stay mobile. It was difficult and still is. The pain is no fun and the only really good pills (Celebrex) are too expensive.

I embarked upon a lifestyle change – a raw food diet, which was very expensive, in the terms of having to buy equipment and very difficult, but I enjoyed the challenge.
To my total surprise, I felt great – not just good, but absolutely wonderfully, exhilaratingly well. The neurologist at the local hospital was surprised, but not as much as I was.
I’d gone from being able to shuffle for ten metres and having to rest, to being able to march along the road, albeit with the help of Ibuprofen as I have very severe osteo-arthritis in my right knee as I have no meniscal cartilage.
I ate no gluten, pulses or dairy. I read Roger McDougall’s article on how he’d recovered from paralysis by eliminating gluten from his diet. His recovery was slow, but permanent. I knew, somehow that this would help me. Something had to. I was at rock bottom and drilling down even further when I started the diet.

A few months later, I was resisting the raw food ethos. There was little support available for non-vegans and a great many people were pretty evangelistic about their vegan beliefs and how this would save our souls and the world at the same time. Another huge ‘NO!’ was starting to bubble up from deep within.

The good thing about the diet was its total exclusion of modern processes of cooking and how it seemed to change something within my brain for the better. I still don’t eat gluten – I avoid it wherever possible and I don’t eat pulses – I don’t even like pulses, so that’s not a problem. I eat a very low-carbohydrate diet, on the orders of my GP and endocrinologist and I live in Spain.
The speed and amount of images passing in front of me in York, was too much for my optic nerve and brain to process – hence the confusion and drunk feeling after a few minutes. I didn’t feel like that in the country, away from cars and hordes of tourists and I never experience that here in deepest rural Galicia.
I have had one relapse since 2005 and that experience was sobering. I thought, mistakenly that after so many years of MS, that I must have moved into a Secondary Progressive stage- despite the fact that there was no progression.
We were fortunate, that due to my husband’s retirement, we qualified somehow, for access into the Galician version of the NHS and when my last relapse, in 2009 hit me, I was admitted into the local hospital and stayed there for two weeks.
I had run out of Rebif (beta-interferon) some eight months earlier and decided to try Low Dose Naltrexone. My neurologist had warned me that there was no good evidence that it stopped relapses and he was correct. It didn’t.
Low Dose Naltrexone did help with my stiff legs and made an enormous difference to my bladder function – but it didn’t stop the relapse that robbed me of months and months of good mobility –no dancing, no beach, no fun, just fatigue and wobbly legs.

There was a curious case of coincidence, in that the UK MS Society’s Everyday Living message board was at that time, being shouted at by a very loud American, who despite being irritatingly in-your-face and ignorant of life with MS in a not-for-profit health system, was quite helpful and assured me that I could take LDN with Rebif and so I did, despite the difficulty in obtaining LDN in Spain – and it is extremely difficult indeed, if you use the usual methods. It’s very easy when you know how…
So, along comes Vitamin D3 as the latest bit of knowledge to help calm the MS activity and I take that as well and despite some horrible knee problems, I’m still fortunate enough to have the energy to walk and cycle – although due to the ligament problems, I must wear 3 kilos of weights on my right ankle, or else my foot won’t reach the pedals. That’s quite a feat of balance.
So, this week, I’ll be 51. I still have MS, with the added fun of hormones, which provide me with internal heatwaves and yo-yoing moods, from deepdown depression to quite happy, thanks.
To celebrate, I’ll be eating a forbidden food – bread. I’ll savour each mouthful of the slow-proven, wood-fired oven baked bread, toasted, with butter and Marmite and boiled eggs. It’s worth it once a year.
Oh – and cake and perhaps some K-24 Premium Gin. I like good Gin, it’s the little things that make life fun.

Advertisements
This entry was posted in Uncategorized and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s