Category Archives: Disability

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.

 

Woman lying on bed with camera, phone, book, etc
Mar 20 2020

Chronic Illness Warriors Can Show the Way in the Days of Covid 19

When we first heard the tales of people in China being in quarantine for two weeks – and going stir crazy after a couple of days – many pwME (people with Myalgic Encephalomyelitis) were saying (to each other) – “Two weeks is too difficult? They should try x number of years.” A considerable amount of us are mainly housebound or even bedbound, and those of us who live alone effectively spend much of our lives in quarantine.

I have had ME for many years. I’ve always lived alone, but since 2015 I have been living in a house in a rural area. This means there is nowhere for me to go without a car journey (I live six miles from the nearest bus stop), so I don’t get to go very many places. As I receive few visitors, I spend most of my life on my own. There are a lot of us in a similar position, and we have had to develop multiple strategies to cope with the isolation. As a result of this, I believe we have a mental “head start” on the rest of the population in the matter of social distancing.

Whilst it would be nice to think that others will have a better understanding of our situations after this – with less of the “I wish I could spend the day in bed,” “It must be nice to be able to watch Netflix all day,” “I’d love to have the house to myself” type of comments, that’s not what this article is about. Rather, it’s that we have developed coping skills over the years that make us experts in this matter, and we are in a position to advise those to whom this is new and a shock.

Let’s start with social media. To those who argue against it by saying that it cuts down on genuine face-to-face interaction, you have to understand that it can also have the exact opposite effect for those who don’t have the same opportunities as the majority. I sometimes think it would be very difficult to live without Facebook. It keeps me connected to my real-life friends that I rarely, if ever, get to see, but it has also given me a whole new group of friends, many of them connected with my illness. There are numerous supportive chronic illness groups on there, and as some of them are international, you may often find someone to talk to whatever time of the day or night it is where you are. I have made one friend through Facebook with whom I spend literally hours every week talking on Messenger. Other people have similar experiences with Twitter. And then there are places such as The Mighty – massive online communities, ready and waiting to encourage and share experiences with each other.

But it’s not just other ill people. You can join groups with people who share similar interests, whether that be reading, politics, film, or whatever. You can keep up to date with people in your previous profession. You can feel as if you’re not really isolated, as all those people are within reach of your phone, tablet or laptop.

And then there are the non-social ways of keeping yourself occupied and interested. There’s far more than just Netflix and reading! I’ve done many online courses with sites such as FutureLearn, in subjects as diverse as German, creative writing and archaeology. Specialist language sites such as Duolingo can be quite addictive. Not to mention the whole online gaming community.

Got something to say? Start a blog, or write for a site such as Medium or the Huffington Post. Declutter your house, one drawer at a time. Get into cooking. Learn a musical instrument or practice one you already know. Knit. Crochet. Paint. The possibilities are endless. And if you need encouragement or don’t know how to start, just ask one of us chronic illness warriors. We’ll be glad to share our expertise with you!

Mary Tynan

Picture by Bruno Cervera from Unsplash.

Mar 20 2020

Living Life with a Low-Capacity Battery

The other day, I was struggling, as many of us with chronic illness do, to explain myself to a friend. As usual, I had to give up. I can’t explain to her why it’s not perfectly easy for me to drive in and out of my nearest city (an hour’s drive each way, a quarter of which is on narrow, twisty rural roads) several times – or even once – a week. I’ve tried using the spoon theory, which makes a lot of sense to me, but I don’t seem to be so good at explaining it to others, and people often don’t want to or have the time to follow links and read articles that you send them.

I don’t claim to have invented the battery analogy – I’ve seen it many times before, particularly in connection with Myalgic Encephalomyelitis, the neurological disease I suffer from. But today, possibly because I just recently got a new laptop, with a much longer-lasting battery than its predecessor, I suddenly felt like I could use it to make a good explanation of what it’s like to have ME and other chronic illnesses – something that I and others could show to our friends and family members to help them understand.

Imagine two laptops, or smartphones, or tablets. Both have a battery. Each battery can only recharge once in a 24 period. One has a charge that lasts for 20 hours, the other 5 hours. This is a pwME (person with ME) versus a healthy person.

But it gets more complicated than that. There’s something called boom and bust. Imagine a pwME wants to go away for a weekend and be out of bed for 14 hours a day for three days – I’m planning to do this myself in a couple of weeks. (I will be attending a conference: having breakfast in the hotel with friends; going to talks during the day; and having dinner together in the evening.) But that means you need to find 27 extra energy hours somewhere.

Maybe you can use some of those backup battery packs? Maybe you can get 5 hours out of each of them. So, 6 of them should be more than enough, with a few extra hours for emergencies. But they all need to be recharged overnight (19 hours) also.

AND YOU ONLY HAVE ONE CHARGER!!!

So, in order to add those 27 extra hours to your weekend, you are going to have to spend 19 x 6 (114) extra hours in bed. This will obviously have to come out of the five hours a day when you are currently not resting. You do the maths! (I was being rhetorical there, I am actually going to do the maths. 🙂)

114 divided by 5 is almost 23. That’s how many days, at minimum, you will have to be bed bound to recover from your three days of activity. More than 3 weeks. And I am actually being very conservative with the figures here. You could easily add another week to that. And some activities will use up the batteries faster than others, making your energy debt even greater.

That’s how it works. And, although I am writing from my own experience as a pwME, it works the same way for many other chronic illnesses.

So next time you see a chronically ill person attending a party, going out for a day, or even having a weekend away, don’t think to yourself “She must be getting better/he can’t be that bad really/how come they can find the energy to do the things they really want to do?”

Instead, do the maths. Your chronically ill friend will still be paying the price days, weeks, or months afterwards – long after the party, event, or holiday has faded from your memory.

Mary Tynan

Picture of Nearly Empty Battery

Previously published in The Mighty and  Yahoo Lifestyle (as Teresa Ledwith) under the title The Best Analogy to Explain ‘Energy Debt’ With Chronic Illness.

Apr 6 2015

All in the Body

An acquaintance with Myalgic Encephomyelitis, on telling a friend about her condition, was asked, almost reflexively “Do you really have ME or is it just depression?”  The same woman had to change doctor at her NHS practice recently (her regular doctor being on long-term sick leave).  The new doctor expressed great surprise that her condition had not been cured by anti-depressants (but was otherwise sympathetic).  These two incidents exemplify two of the main issues raised in Angela Kennedy’s excellent book: firstly that chronic illnesses for which no clear medical cause is identifiable are often classed by medical practitioners as psychogenic (psychosomatic), and secondly the detrimental effects such classification can have on the patient’s treatment, not only medically, but by society at large.

To a large extent this work is a literature review, or perhaps a meta-analysis, of existing and previous research.  Which is all to the good, as a large amount of the extant results seem to have been misreported and misinterpreted by the (popular and scientific) press.  Although Angela focuses on ME/CFS, the conclusions are applicable to a much wider range of conditions.  Of interest is the fact that (or so it seems to me), a disproportionate amount of the case studies, both historically and more recently, are those of women.  Ms Kennedy gives an interesting personal account of how her GP informed her in no uncertain terms that she was having a “hysterical pregnancy” when she attended the surgery after having completed a home pregnancy test.  Her ‘hysterical’ son is now a grown man!

The book begins by pointing out the fallacies associated with psychogenic explanations: the reason for a condition being “medically unexplained” is usually down to limitations with current medical knowledge.  Attaching such terminology to certain diseases can also lead to shutting down further avenues of investigation, often with severely detrimental results.  A convincing argument in the introduction is that: “The present lack of critical examination of this conjecture (that ME is a modern version of neurasthenia) is also not a reason to accept this conjecture: no scholarship has yet been performed to suggest CFS and ME are not caused by demonic possession, for example, but this should not mean therefore that they are caused by such, even if such a reason might be ‘persuasive’ to some.”

Ms Kennedy goes to discuss “problems of psychogenic explanations in action:” the beliefs that certain types of people get certain types of illness, with a particular emphasis on the diagnosis and labelling of people with ME.  The following chapter deals with doctors’ attitudes to such patients, often labelled as “heartsink,” containing some shocking examples of patients labelled as lazy, malingering and hypochondriac.

“Think yourself better” explores the dangers of CBT when put forward as a cure, rather than a coping mechanism for ME, whilst “Consequences of psychogenic explanations” looks into how such explanations can be widely damaging for the patient, both in the hands of the medical profession, as well as at the hands of society at large.

Angela concludes that the trend towards labelling illness as psychogenic is on the increase, and that this is a dangerous direction to be heading in: “(the realities of psychogenic explanations) are most often fallacious in their logic and informed by harmful ideologies.  They cause actual harm in many ways.”

This is a very significant book about a highly important aspect of medicine which has detrimental effects on many of us.  Angela Kennedy has taken what is evident in the literature and research, and reported it in a non-biased way, thus giving us access to serious evidence against the psychogenic theory of illness such as ME/CFS which has been ignored by many other publications, and certainly the popular press.

I advise anyone with an interest in ME, CFS, other neurological or fatigue-related illness, as well as those interested in the whole mind/body connection issue as concerns disease, to read this book.  It can be purchased from www.amazon.co.uk for £17.59.

Mary Tynan

Angela Kennedy Angela Kennedy is a social sciences lecturer and researcher at a number of universities in London, and author of numerous articles, papers and books in lay, professional and academic media over a 30 year career.