Friday, November 28, 2014


I have often wondered what role a person's personality plays in the development  and management of ME/CFS.

I heard an "expert" on Irish radio speaking, about eight or nine years ago, about Fibromyalgia (FM), a condition that is related in many ways to ME/CFS. He mentioned that it primarily effects the personality type IMP, which stands for Intense, Meticulous Perfectionist.

This, of course, is a gross generalization, and seeks to reduce the explanation of a complex problem to a simple key. But it did get me thinking. I am not that intense, I am fairly meticulous, but not obsessively so, and have some perfectionist tendencies, but am a long way from an IMP.

That said, I can see the rationale behind linking certain aspects of personality to conditions like ME/CFS and FM. In my own case, there are two definite elements that have contributed to the ups and downs of my condition.

The first one is Fear of Missing Out (FOMO). If I look back I can see that this stems from way back, from my childhood at least. I always hated it when my friends - as a group - got to go to see a film I really wanted to see but had to miss for whatever reason, or if my family went on a trip while I was sick at home.

I had a lot of bronchitis as a kid, and was sick quite often, so I think that this contributes to my horror of being on the sidelines.

In 1978 the Pope came to Ireland, and there was great excitement throughout the whole country, which at that time was quite obsessively religious. My mother and aunts had planned to go and see him at an open air mass he was giving for hundreds of thousands of people, and I, at seven years old, insisted on being taken along.

I knew little or nothing about the Pope, but I saw all of the preparations, and the excitement, and absolutely refused to be left behind. Of course it was a miserable experience for me, we ended up having to walk for miles because there were so many cars parked there, it was raining and I was exhausted and bored to tears when we finally got there. My mother had told me what it would be like, but I was insistent on going, just in case I would miss something.

I would spend days or weeks stewing over some fun event that I missed for whatever reason. The reasons for my hatred of feeling left out are probably complex and would need therapy to dig out, but it is something that has always been with me. It is anxiety that the world is having a great time without me, coupled with an intense regret that I didn't take a different course.

Of course this is lethal with ME/CFS. On many occasions I have pushed myself too far at the wrong time, just because I couldn't bear to miss anything. This is usually after a cold or infection, when I should be resting, yet once I start to feel a little better I can't wait to get back to normal life, and often end up crashing.

It is a pattern that has repeated itself over and over again, despite my knowing what will happen if I don't take care. It happened just last week, in fact. I got this cold, streaming nose and heavy chest, and took a few days off. I soon started to feel up to more activity, and although I thought I was taking it easy, I always forget how much rest I need after an illness. By last Wednesday, after I had gone back to work on Monday and Tuesday, I got out of bed that morning and was dizzy and nauseous, and spent the next two days in bed, utterly drained.

I am still recovering now, two and a half weeks after the initial cold. The irony is that in pushing myself to get back to activity, afraid that my life was passing me by, afraid that I was going to miss things, I ended up missing much much more than if I had just taken my medicine and gotten over it earlier. Plus I would have missed less work and lost less money.

Linked to this, I believe, is an Exaggerated Sense of Responsibility (ESR). It could be connected to being the first born in my family, a lot of my friends are also the eldest in their family and share this sense of responsibility and duty.

I am involved in a local voluntary cultural organization, and also organize a series of night classes, both of which I have built up largely on my own in recent years. So when I get sick, it is very difficult to let other people teach my classes, or run events that I have planned. I hate cancelling classes with my private students, and having to let people down.

Somewhere, of course, this is tied to self-esteem and self-worth. I don't want people to think less of me if I have to cancel things, and I am not good at delegating decisions or work to others. I don't want to be the guy that lets people down, misses things, is unreliable. And of course that is exactly what ME/CFS makes me, someone who may have to let people down, may have to miss things, may have to be unreliable.

So these twin factors, FOMO and ESR, are central to my personality, they lead me to push myself when I shouldn't, and make it difficult for me to just rest when I need to rest. I don't want to be this vulnerable, fragile creature, always taking time out, always crying off, constantly telling people that I can't. I want to be the guy that can. And I am not, and that conflict is difficult to get around, and has caused untold problems for me in trying to deal with this condition.

I have to stress that I am not suggesting that ME/CFS is caused by my personality, or by anyone else's. It is clearly a physiological illness, with underlying physical causes, not a personality disorder.

What I am saying is that ME/CFS - perhaps more than most conditions - has to be managed very carefully. Management is vital to being able to live with this thing, and how you adapt your life to your illness is central in managing to survive. And what your personality is like is key to this, to accepting the compromises that you have to make, to dealing with difficult times in your life, to being sensible when you need to.

And my personality, and the drive to succeed, and to appear to be strong, in control, responsible and competent, has often not been a help to staying well, in fact it has caused some major collapses along the way that could have been avoided.

I have gotten better over the years, I have had to. But just last week has shown me that I have a long way to go to get over my fear of missing out, my exaggerated sense of responsibility, my troublesome, restless, unquiet personality.

Thursday, November 6, 2014


A curious element of my particular experience with ME/CFS is all of the different kinds of inflammation and aching that I feel in my body from time to time.

I talk about "inflammation" in the broadest sense, this is not a medical diagnosis of what I go through, simply a way of describing feelings of discomfort in different parts of my body.

There is inflammation in the gut and stomach, of course. Many people with ME/CFS have irritable bowel syndrome (IBS), and while I don't think that is quite true in my case, I do have a lot of food intolerances that cause bloating, discomfort, tenderness in the stomach. If I eat a lot of a food that I can't usually take, like wheat or cow's milk products, it can feel like my gut is swollen and inflamed. Even small amounts of certain supplements or medications (D-ribose for example) can do this too.

I have also had prostate inflammation for years now, it started a couple of years into my ME experience, so it has now become an everyday part of my existence. I have discovered, through various ME forums, that this is quite common in men with ME/CFS. It can manifest itself as a dull ache in the prostate, and a strong desire to urinate, often frequently. It is, at times, literally a pain in the balls. At its worst it can be uncomfortable, even to sit down, and can wake me up at night, though this is rare.

Six months ago I had what could have been a very serious
car accident. I was told by multiple people that I was lucky to be alive, the car skidded and turned on its side in a ditch while I was going 100 kilometres per hour. I emerged with only some aches in the back and tingling in the feet. I have had some physiotherapy

recently, and this has improved, but it is still an issue, intermittently. The feeling is often that my lower back is stiff and sore and aching. It sometimes also feels like my neck and upper back too are jammed and locked up.

And the last main area is the chest. After a cold - something I had last month - I often get a cough or wheezy chest for a few weeks after, and I have been experiencing this recently. There are times when I have had difficulty breathing at night, or when I haven't
been able to speak because of the coughing. I am not sick anymore, but the heavy, irritated chest has stuck around. I also react to animal dander, especially cats, which just chokes me up.

There are a number of things related to all of these symptoms that I have discovered over the years that are quite curious. Firstly, the various forms of inflammation seem at times to be random, and are all intermittent. One day I may have an aching back, the next my prostate may be sore, this may last a few days, and then I may get a temporarily inflamed stomach. There isn't an easy way to predict what I will be experiencing from day to day.

Secondly, I rarely have more than one symptom at once. So for example, if my back is aching then my prostate is generally calm. If my chest is tight then it is unusual to have a disturbed, disrupted digestion.

This has had interesting implications. I have found that my chest and sinus are effected by something in my bedroom, it has been like this since I moved into this house, two years ago. I solved it initially by getting an air purifier, and so have been relatively fine recently.

Then, a couple of weeks ago the cartridge in the purifier ran out, and I haven't been able to get a new one as the company I usually buy them from is out of stock. So my chest has been heavier than normal, I've been wheezing, having trouble breathing at night.

What I have also found in this time, is that I am much less reactive to problematic foods than normal. I have eaten pasta, apple tart, cow's cheese, cream, bread, pastries, all with minimal reaction. I haven't eaten great quantities of these, but the fact that I have been able to eat them at all is remarkable.

Somehow it seems that my body can only react one way at a time to the environment. If my chest is reacting to whatever irritant is in my room, then my stomach is much less likely to have a bad reaction to problem foods. The same happened a few months back when my back was giving me trouble. I was aching and stiff for weeks, then I had a period of prostatitis which was particularly uncomfortable, and my back stopped hurting so much, pretty much immediately.

The final curious element in all this is that, during relapses, the various kinds of inflammation that I normally experience often disappear. In May of this year I had a relapse after a stomach bug, and again, my back, which had been giving me a lot of trouble for the previous two months, eased off pretty much immediately.

The same was true of the prostate, which was fairly calm, almost normal. I had few digestive problems also, and didn't tend to react too badly to problem foods. In fact, I knew I was getting better when I started to have more aching in the back, an achier prostate, and when the stomach started to react to things again.

I don't pretend to understand this, but the times when I have most energy, when I am most clearheaded and "normal", are when I have a stinging prostate, or an aching back, or an inflamed gut. It is perhaps that the inflammation, the stinging or irritation is a sign that the central nervous system has woken up, is kicked into action, is no longer dormant. The various forms of inflammation that I experience are possibly by-products of a dysfunctional nervous system overreacting while trying to return to a more normal state.

Though this is all speculation. As I said, I don't really get it. I would love to know a little more about human biology and physiology, to know how these various reactions come about, and what causes them. What is true though, is that I now welcome a certain amount of aching somewhere. It means that I am probably going to have some energy, that I am not going to be as lethargic or sleepy or drained as I am at my worst, that the occasional headaches or nausea that I get will be kept at bay.

This is what happens in a condition as messed up as ME/CFS. You can learn to welcome things that healthy people would see as annoyances. I live with my various inflammations, and, as long as they are only slight inconveniences, they are a bizarre sign of some rare, much needed energy that is not always available. I would love one day to feel good without feeling bad somewhere else, but for now the trade-off is the only thing available, and that is what I have to accept.