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 #millions missing.

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.

Woman lying on bed with camera, phone, book, etc

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.

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.

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.