So all the false starts and decisions came to an end. On 14th August I ingested my first dose of fingolimod and finally hung up my copaxone hightops. Trends, treatments and my disease had moved on.
I became, for the first time in my life, a member of the ‘early majority’. In consumer and innovation theory an early majority comes after the early adopters. The ‘early majority’ are deliberate in their decisions, not the ‘venturesome’ innovators or fashion conscious like the early adopters. But I was still the first person at my hospital to complete screening for fingolimod.
Despite the trials having been completed, the element of risk with the drug was still there, but quantified. I was nervous as I entered the day clinic, to take my first dose and watch my heart rate slow as anticipated. But my heart coped fine and began rising again. I was released from the clinic to go home.
However three months later life on the drug is proving a bit trickier. Whilst some of my sporadic symptoms (bad tone in my arm, swallowing difficulties, bladder problems) have eased, the lowered lymphocyte count is causing some issues. Causing issues in the last place I would expect: my mouth. Three times in the last six weeks, whilst I’ve been flat out with university teaching and freelance research, I’ve incurred a troublesome sore in my mouth which only heals with antibiotics. And to make things worse it seems fingolimod contraindicates with many antibiotics, meaning that I’ve yet to find one that doesn’t make me feel lousy after a few days.
It seems the problem with being in the ‘early majority’ is that the answers and solutions are still being figured out. No one seems to know what a good antibiotic might be for those on fingolimod, no other patient seems to have even had mouth problems. I’m still on a journey to find out how to prevent rather than suffer with these side-effects.
Copyright © Cathy John 2013. All rights reserved
When I moved out of the smoke in 2011, one of the first things I did was get a car. Hank, an ice blue Honda Jazz, came via stereotype busting car salesperson, Asha, a middle-aged British-Asian businesswoman and formidable matriarch.
An easy to drive automatic accommodating my left side weakness, the car was christened by a friend gifted at the nomenclature of inanimate objects: “He looks like a Hank”. For the first couple of months he was something of a battered husband, as I reacquainted myself with driving and the edges of things. But he soon became indispensable and, along with my blue badge, became a better (though not greener) solution to getting around than public transport with its long interchanges, steps and throngs of people. Like a trusty steed, Hank became my mobility.
We were trundling along together well until this summer. As the temperature started rising, Hank began to have some difficulties. His normally smooth acceleration was interrupted by splutters and misfirings. He struggled with hills, in the worst heat he lost his stride entirely as he juddered and shook forwards. He seemed fine on starting, but once heated up, the electrical fault kicked in. Diagnosis proved tricky. Two admissions to the Honda garage were inconclusive, but when the temperature fell, the problem subsided.
It took some weeks before I realised the striking similarities in Hank’s symptoms to my own: poor electrical conductivity causing mobility problems exacerbated by hotter weather and exertion (exertion resulting in a rise in engine/core body temperature).
Fancifully, I like to think that my stalwart companion Hank, fell prey to this condition in sympathy of mine. I’m just sorry that he can’t enjoy plunging himself into the rejuvenating, chill British seas as I do. The cool waters enabling my electrical charges to flow effectively up and down my moving body and me to swim without fatigue.
Copyright (c) Cathy John 2013. All rights reserved
When I was an exchange student living in the International House at UC Berkeley, in the dining room we played the hand game rock, scissors, paper to decide who would take on the ‘chore’ of returning dining trays. If you lost the game you took your tray and the victors’ to the return hatch.
After months of deliberating over . . . → Read More: Tomorrow’s Yesterday
Decision making has never been my strong suit. For me simple selection rapidly turns to dilemma; daily choices that don’t even ruffle the feathers of fortune, for me become long debates laden with import. . . . → Read More: Ruffling the Feathers of Fortune
Thank you for all your well wishes. With the turn of the new year I finally withdrew completely from the long and troublesome course of steroids I underwent last autumn and although my MS symptoms have returned slightly worse than before, I am free from the destabilising side effects I was experiencing.
I am back to work . . . → Read More: Alive, Kicking and Writing
Just a placeholder to say that my treatment and reaction to it this autumn has prevented me from writing for a while now. My recovery will take a few more weeks unfortunately, but when I am able to write again I have plenty to write about! Many thanks for . . . → Read More: Rain Stops Play
This Tuesday brought a repeat of the BBC Radio 4 programme investigating the experiences of myself and my friend Andrew in ‘Coming Out’ with MS. In its lunchtime slot of 13:45 I know a lot of people caught it by chance, but if you didn’t here’s the link to listen . . . → Read More: ‘Coming Out’ on BBC Radio 4
One of the most distinct experiences of having MS for me, is looking young but often feeling old. Energy has to be sparingly used, limits considered. At some point over the last twentyfour months regular old stairs became ‘Stairs!’, something to be negotiated in trepidation, sitting down became a favoured activity and careful planning is required . . . → Read More: Skin Deep
It is with huge pride that I introduce the first images to lickingthehoney.org. Gallop is a film I’ve been working on with shift.ms. Directed by the BAFTA nominated, definitely going places, Michael Pearce and produced by shift.ms and creative agency Mother London, it is not often such people collaborate to tell a story about Multiple Sclerosis. . . . → Read More: Gallop: A ground-breaking short film for MS
As ever with this capricious disease there is no knowing when this period of calm will end. Yet that it exists and has existed, has improved my hopes for my own condition as I approach the five years mark from its onset. . . . → Read More: Pill Popping