Tag Archives: encephalomyelitis

Jun 7 2021

Chronic, by Mary Tynan

I’m the person you don’t see –
The person with ME,
The person who’s hidden
Away in her room;
Often in bed,
Stuck in her head,
Maybe reading a book,
Or listening to a tune,
Making friends on Facebook or Twitter

We’ve been forgotten
For many a year,
But come a pandemic,
And we appear;
Now we can watch a play,
Go to a class,
See our friends on a video call –
Suddenly, we’re part of it all,
Included at last

But what happens to us
When usual returns?
Do we also return –
To our rooms, our cocoons?
Will we be forgotten again
When you’re making new plans –
When things return to normal?

Mary Tynan

Nov 19 2020

Why Lockdown has been a Lifeline for me, by Mary Tynan

Lockdown may have made life smaller for many people, but it made mine bigger.

Unlike most people, I wasn’t that upset when the first coronavirus lockdown began.  As far as I could see, it wasn’t going to make much difference to my life.  But I was wrong: it made my life better.

As a chronically ill, disabled person (I suffer from the neurological condition Myalgic Encephalomyelitis) living alone in a rural location, I had long been used to spending most of my time alone.  Many weeks, if I didn’t visit a shop, I didn’t see anyone.  And shopping was becoming harder – I had already begun the transition to grocery delivery before the pandemic.  I connected with people mostly via telephone or, more and more as time went on, via the web.

I used social media such as Facebook for two main purposes: to keep up with people that I rarely saw, such as friends from my previous life as an actor in London, and to make new friends, especially within the ME and chronic illness communities.  I joined support groups, book clubs and other interest groups; I attended and ran virtual pub quizzes and parties.  I also used the internet for solo activities, such as practising and learning languages on Duolingo, and studying everything from Archaeology to Cyber Security.  I was well-practised at living life online.  What happened early this year is that everyone joined me.

Right at the beginning of Lockdown, some friends and I decided to set up an online school.  Ar Líne Le Chéile was small, and part-time, and wasn’t intended to replace or compete with anything that children were getting from their regular teachers – rather, it was to help combat loneliness and isolation.  In this it succeeded, and our small class of primary school children had formed great friendships by the time we finished in June.  As I was already an experienced teacher, I took an active part in this, the highlight of which was the weekly multidisciplinary lesson where we made virtual visits to such places as the British Museum, NASA and the London Underground.  It was a lovely feeling to have my own class again, for the first time since 2008.  A side effect of this for me was that my old interest in coding was reawakened by a Scratch class run by another teacher (Philipa Farley, the writer of our Farley’s Philosophy column), and I ended up learning the Python programming language during the month of April when Pluralsight offered free courses for a month.

There was so much life online all of a sudden!  Musicals by Andrew Lloyd Webber and plays from the National Theatre, for example, were available to watch free of charge.  I attended an online 80s concert with a couple of friends, who didn’t know each other previously; we watched in our separate homes and chatted via text at the same time.  I joined an online choir, and played board games with friends all over Ireland via WhatsApp.

I had an online magazine, Notes From Xanadu, predominantly an arts review, which had been semi-dormant over the preceding five years.  I had written a couple of Covid-related articles, and was in the process of revitalising it.  Then I had an idea: instead of relaunching as just a magazine, why not do something novel and create an online arts centre?  I set the date for the May bank holiday weekend, and got in touch with artists of all genres.  Over the four days of the launch we had 20 different features, ranging from writing to opera (world-renowned soprano Ailish Tynan was one of our first contributors) to puppetry.  We had visitors from numerous countries on six continents, and have continued to gain new followers and artists since then.

Although I don’t generally manage to get out much, I always do something for my birthday, whether that’s a restaurant and/or pub visit, or a small party at my house.  I decided not to let the virus stop me this year, and organised my first audio-visual virtual party.  I had guests from as far apart as London and New Mexico, and we played games, performed music, chatted and generally had a “night out.”  Unfortunately, problems with internet connections kept a few people away, but the evening was enough of a success for me to decide to develop a theatre as part of the online arts centre.

On 23 September 2020, Xanadu Online Theatre was born, with a launch concert/variety show featuring artists from three different time zones, and an invited audience from countries stretching from Finland to the US.  Unlike other similar ventures that have begun since Covid 19 gave us the New Normal, which use Zoom and other such platforms, this theatre is embedded in the Notes From Xanadu website and uses the open-source software Jitsi, which very much fits ideologically with the values of the online arts centre.

As part of the launch concert, I decided to perform a short scene with an actor friend in New York, Ash Reddington, and thus I found myself practising my craft as an actor for the first time in almost 6 years.  I have since set up an in-house theatre company, and we are having our first show in December.  Thus, as a result of the virus, I find myself where I thought I would never be again – in the rehearsal room, preparing to act on stage in front of a live audience.

This is the first in a series.  Watch out for accounts of other people’s positive lockdown experience in the coming weeks.

 

May 4 2020

May for ME

May is ME (Myalgic Encephalomyelitis) awareness month. It’s probably the awareness month for several other medical conditions as well – let’s face it, we have more than 12 of them after all, so maybe we should be going for a week, or even just a day?

Whatever. I’m not going to be posting about ME every single day of May (we’re already on day 4, and this is my first one, after all). But I am going to be posting. Today, I’m going to start with a short description of the illness, and then tell you a little bit about my experience with it.

ME is a debilitating neurological illness with numerous symptoms, including bone-weary exhaustion, muscle pain, joint pain, stabbing neurological pain, headaches, intolerance to light and sound, sleep disturbances, light-headedness, orthostatic intolerance (inability to stand), inability to regulate body temperature, persistent flu-like symptoms, nausea and IBS, fibromyalgia, brain fog, difficulty concentrating, short-term memory loss, slurred speech and more. But the overriding symptom that differentiates it from every other illness is called post-exertional malaise (PEM). This means that patients have a severe, delayed reaction to exercise, and in many cases never return to the same baseline they were at before whatever sent them into a “crash.” Have you ever massively overdone it on the weights at the gym, and been in so much pain you were unable to move the next day? Add that to having influenza and the fatigue you might feel after doing your first marathon, and you might have some idea how it feels. Plus, if you ever do manage to return to our metaphorical gym, you will only be able to lift half the weight you could before. This is no exaggeration: I moved my sofa a couple of inches in mid-December last year (pushed it with my whole bodyweight), and I was confined to bed for weeks. I almost missed Christmas Day – I did miss singing with the church choir on Christmas Eve.

My ME journey began in 2004. I got a flu-like illness that never went away, although I suspect I had already had fibromyalgia for some time before that – it had been misdiagnosed as ankylosing spondolitis. My doctor thought the original illness may have been glandular fever. Strangely enough, the diagnosis made me feel a bit better – I didn’t know then what I know now about ME. I took a three (long) days a week teaching job and tried to just get on with it. That didn’t really work, and I had to resign from the job. However, shortly after that I discovered a local chiropractor, and spent a lot of money on intensive treatment which put me into about 95% remission, or at least that was what I attributed it to. I later learnt that it is common to go into remission in the first couple of years, and for it to come back again a few years later, in a more permanent form.

I spent the next few years working as an actor and also as a supply teacher – two very physically demanding jobs. I thought I was fine. I even did the couch-2-5k programme at one point with my friend Tracy – although I was a terrible runner: I could almost walk faster than I could run. I would train in the gym every day if I could, and I attended Body Pump and Pilates classes. I went clubbing when the opportunity presented itself. I did physical theatre and danced in musicals.

But at a certain point in 2010, I felt the illness return. In retrospect, it had probably been creeping up on me for a while, but I had been too busy to notice. I was temping in an office Monday to Friday, teaching GCSE English catchup lessons in a secondary school on Saturdays, and directing and playing the leading role in a play for which we were rehearsing three evenings a week plus Sunday. (I am a bit of an overachiever, but this is also what it took to make enough money to live on).

My next play was a physical theatre piece. I had to tell the director that I couldn’t do that part of it. Luckily, I had one of the speaking parts, which didn’t necessarily have to involve a lot of movement. At this point, I could no longer run, work out, or go clubbing, but I could still do the dancing required for a musical a couple of years later, go to two tap classes a week, swim, and walk for miles. Standing up for more than a few minutes was beginning to be a bit of a problem though.

Fast forward to late 2014. I had to give up the intervention teaching job I had been doing (in the same school, but through an agency) for several years. By this point, I could only swim for about ten minutes, there was no tap dancing, or cross-city walks, but I could do yoga. Standing for more than five minutes was problematic, as was navigating steps. I had one last stab at work a few months later when I took over the lead role in a play after someone fell ill. I learnt 70 pages of script in five days. I had worked with the director previously, and he set up the stage in such a way that I could sit down whenever I felt the need to. In the third week of our four week run (with a lot of my friends in the audience – it was St Patrick’s Day and I had arranged for there to be a half-price ticket night), everything went black around me, apart from the face of the actor who was right in front of me. I almost passed out on stage. I finished the run, but I haven’t worked since.

A few months later, I left London and moved to a house in the country in the West of Ireland. At first, I could still walk 5 k each day. It would use up at least half of my daily energy, but I prioritised it because made me feel good mentally. Things have got progressively worse since then, and I recently acquired an electric wheelchair. Some of the simplest household tasks are beyond me, such as changing my bed sheets. Although I live in a dormer bungalow, I rarely go upstairs.  Sometimes I don’t eat, because I’m not well enough to wash the dishes afterwards.

I have already mentioned the sofa incident. In early 2018, I spent three months in bed after a one-week visit to London. I can no longer travel by any form of public transport on my own. Before Covid 19, I was travelling to my nearest city maybe every 5 – 6 weeks.

ME is what is known as an invisible illness. If you see me, it will be because I am having a good day. If I am having a bad day, week, or month, then I won’t be going anywhere. If I seem to be enjoying myself at your birthday party, I probably am – but I will be paying for it for weeks afterwards. This is the reality of life for people with ME, especially those who live alone. There is no treatment and no cure. We are the #millionsmissing.

Mary Tynan

To understand more about PEM and energy debt, please read my article “Living Life with a Low-Capacity Battery,” which was previously published in The Mighty and Yahoo News.