It’s been a busy few weeks, actually quite relentless since coming home from my holiday in Canada, and my body is now screaming at me to stop (actually more a persistent whimper). I hate feeling like I’m wasting my life, being bored and doing nothing, but I seem permanently unable to find that magic balance between life and rest. So I did the living, and then paid for it.
A few days back in the UK and I was off to a hen do (bachelorette party), it’s just one of those things you have to go to isn’t it? A weekend away doing drunken karaoke is fun, but when jet lagged and already knackered harder to enjoy.
Two weeks later, a trip to Vilnius, the capital of Lithuania. I know from experience that Eastern Europe is fairly inaccessible, but visiting so soon after Canada, the contrast was brutal. Steps everywhere, cobbled streets, narrow doorways, and not a handrail in sight. I didn’t see other people in wheelchairs, and there weren’t many offers of help. It’s beautiful for sure and culturally interesting, with great beer, but far from easy. This was the same weekend as the People’s Vote anti-Brexit march in London which I would totally have been at otherwise… I just selfishly maximised my own European free movement instead.
An overnight trip with some of my besties in Brighton had long been scheduled. as is normal with 30-somethings, diaries need to be synced a few months in advance. I can’t say I saw a lot of the town, it was more a food and drink trip. On weekdays a direct train runs between my hometown in Hertfordshire and Brighton but unhelpfully not on weekends, plus there were rail replacement buses for part of the leg. Of course the buses aren’t accessible (traditional coaches with steps up). I booked the assistance with national rail and they promised me a taxi alternative to the buses for each leg of the journey. I was totally cynical but the process actually worked seamlessly, with taxis waiting on time for me each way. It means you’re limited to set travel times, as always forced into a pre-planned schedule which can accommodate disability. But, credit where due, The system worked.
I booked tickets to see Jon Hopkins at Brixton Academy back in March, before there was anything else in my autumnal calendar in fact. Massive kudos always to Brixton Academy for their disabled access (all the London O2 academies are reliably accessible). Touring his latest album, it was an electric show followed by a ridiculous few hours in an R&B bar with two of my besties. Not a lot of sleep involved.
I was rather excited to be invited by the MS Society to an afternoon reception at 10 Downing Street to celebrate advancements in MS research and the contribution of vounteers. You have to leave your phone in the entrance so no photos, but the reception rooms we were hosted in were exquisite, imagine a luxury English hotel… with work from famous artists (Lowry, Turner, Emin) dotted around; it all made House of Cards seem quite realistic. Disabled access all flawless (I guess they were prepared for people like me, ready to tweet about any inaccessibility the moment I left). To be honest I was impressed that PM Theresa May came in and spoke, it’s not like she isn’t busy right now, and speaking of her mother, who had MS, she came across very personably. The speech then went on to the obligatory stats about how the government has funded and supported the NHS and NICE, and given my constant first hand experience of health and social care it was hard to keep calm faced during this part. She also praised the MS Society on their work in ‘raising the public profile’ of MS, which I found slightly jarring, would she praise campaigners against violent crime in the same way whilst underfunding our police service!? Also there were some leading professors in MS research including Professor Compston, who led MS research at the University of Cambridge, culminating in the discovery of Alemtuzumab (Lemtrada). I was humbled to speak with him and although he’s now retired, the group he established at Cambridge continues to research MS treatments (what a legacy). I can’t express how grateful I am to people like him – on top of that he was really helpful in passing my coffee cup back and forth from a nearby table. My ‘thank you’s didn’t really go far enough.
This was all polished off by a week of working in London. There are times that I convince myself that the 30 minute train commute into the city would be totally possible for me, and open up a new set of job opportunities. Then I have to do it for a few days and laugh at myself for having considered it. Added to the travel is the stress of organising train ramp assistance, followed by finding and getting into cabs once in London. I was ready for bed each day on arrival to my morning meetings.
Following all that my body just seem to stop. Transferring, whether out of bed or off the toilet became near impossible. I thought I had a UTI, and took the corresponding antibiotics for a week, but following hospital tests on my urine sample it’s not that. My GP has now given me Amoxicillin, which I always think is the antibiotic equivalent of a pat on the head and shrug of the shoulders.
Last week I had to have my walking assessed to qualify for my quarterly Fampridine prescription. It always involves a certain level of anxiety as my ‘walking’, even with zimmer frame and FES, is limited, and I know that I’ve lost strength following the social care stresses of spring and the hot summer. This assessment was my worst so far, I could barely stand up, but even when I could it was as if my toes were glued to the floor. I couldn’t move at all, let alone slowly and the prescribing physio’s stopwatch didn’t even get started. On the basis that I have previously been a strong responder to the drug (my 10 metre walking speed increasing up to 250%), I’ve been given three months grace where I can continue taking the drug and be reassessed in the New Year. I am already dreading the appointment.
I have spent this week resting, sleep upon sleep. It’s times like this that MS feels not just a disability, but much more an illness. I wouldn’t want to have missed any of the past month’s fun, I just need to learn to pace myself, rather than do everything till I crash, then spend weeks recovering. Sound simple enough.