Summer of ’96 should have been the happiest time of my life. After 2 years of planning and dreaming ‘Hollyhocks’ tea rooms was opening. The night before the big day my joy was replaced by worry and fear as I awaited a phone call from the neurologist with my brain scan results. It was whilst renovating Hollyhocks that I developed numbness and tingling in my hand which quickly spread around my body. I was lucky I got an urgent referral from my GP and was seen by a neurologist within days of symptoms first appearing. The phone call finally came and I was told they had found something but couldn’t discuss it over the phone, come in Monday to get the results! It was a long weekend, by now I was having coordination problems, could no longer write and the fatigue was so debilitating that after being up for 10 minutes I had no energy for the remainder of the day…
…By the time Monday arrived I had an intuitive guess at what might be wrong……MS (this was in the days before the internet so I couldn’t Google my symptoms!) I was told it was likely I had demyelination, MS is only diagnosed when you have more than one attack. I had a few treatment options, as I needed a quick fix I opted for intravenous steroids…. In hindsight the worst option as it has led to me having diabetes. I was admitted to hospital for a few days, various tests were carried out including the dreaded lumbar puncture – to diagnose MS everything else has to be ruled out. I returned home and after a long 3 months I was recovered sufficiently to be working full time. The numbness in my hand was still an issue but on a positive note I could write again and I no longer kept putting poppadoms in my ear or eye!
Over the next few years I learnt to live with minor sensation problems and the fatigue. I turned to holistic medicine and would have shiatsu, cranio-sacral therapy and reiki on a regular basis.
In 2001 I relocated to the seaside, the stress of moving exacerbated my MS and I had another attack, this time affecting my eye. The pain was very intense but I still had my vision even if it was blurred at the edges. I easily picked up colds, viruses and whatever was doing the rounds, it would take me longer to recover due to my weakened immune system.
Over the years I learnt to forget that I had MS. A few years ago I had a gentle reminder as I developed foot drop but the doctor told me it was caused by my diabetes and I breathed a sigh of relief. For several years I had a bug every few months which would lay me up for a few days but I learnt to stop working and to rest as soon as symptoms appeared. I didn’t go to the doctor as they can’t give you anything for a bug. Balance problems developed, and my vertigo was getting worse. I saw the neurologist and the MS nurse for the first time in years, I learnt that the bug I had been getting was the MS fatigue. My condition wasn’t improving, muscle spasms, ataxia and migraines were just some of the new symptoms. In September 2014 I had to give up work, I was back to having a limited amount of energy each day. It was at this time that I found out my prognosis had now changed to Secondary Progressive MS. This sent me into a depression…. I had been in denial for many years and all my fears returned. I got much needed support and treatments from the Kent Multiple Sclerosis Therapy Centre.
I was able to claim a small pension from a previous employer and I decided with the lump sum I would do some travelling whilst I was still able. Just before new year I set off on my solo adventure for 100 days. I had spent months planning and booking flights ensuring that I was wheeled onto each flight thus saving valuable energy for more pleasurable pursuits. I had an unforgettable, amazing adventure and met so many wonderful people who I hope will always be in my life. It was whilst I was on a flight that I struck up a conversation with a fellow traveller. We got talking about MS and he told me of his friend who had been cured. I needed details and he gave me her contact info. Hope was in my heart. At my next destination I messaged her and when I got home we spoke. I learnt about HSCT and it made perfect sense to me….. MS is an autoimmune condition so by rebooting the system it should solve the problem. Only around 1000 people have had this treatment so far and to be sitting next to someone on a flight who was friends with a recipient, to me was serendipitous. For me HSCT is a ‘no brainier’! The sooner I get the treatment the better the recovery….
Results so far show a 70 – 90% success rate of halting the progression. At the moment it is unavailable to me on the NHS- they are currently doing trials but because I have chosen to take no disease modifying drugs I am unsuitable ( big pharma has a lot of clout) I have a very healthy lifestyle being vegan and eating organic as much as possible and prefer not to poison my body with drugs which could cause me further medical problems. So I have been accepted on to the waiting list for Moscow….. In the meantime I have a lot of fundraising to do.