Or do you? A good friend of mine teases me quite regularly about whether my existence is real or virtual, particularly when I have been absent from church. Whilst I generally take this good-natured teasing in the spirit in which it is meant, there are times when I can’t help feeling that it touches on something very real. When Dietrich Bonhoeffer was in prison during WW2, he wrote a poem: Who am I? Through it, he makes the point that what others see in a person can be very different from what they know of themselves. There is a sense in which even a face to face meeting can be ‘virtual’. The me that you see may be only a small part of the me that I experience.
Last Friday and Saturday, for example, I took part in an annual musical production put on by members of our Methodist Circuit. I sang, I acted and I played the flute. So what people saw was someone who was able to take a fully active role in a performance lasting an hour and a half. The only thing that set me apart from the rest of the cast was the fact that I spent most of the performance seated. Otherwise, I looked very ordinary. However, what people did not see is what happened afterwards.
Normally, I wouldn’t take the time to enlighten them. After 13 years, this stuff has become so much a part of my life that I don’t consider it worthy of comment. However, since this week is ME Awareness Week, I thought that, for once, I would tell it as it really is.
On Sunday morning, I stayed in bed until lunch time. When I did get up, I could barely walk. I had completely lost my appetite and felt dizzy and sick. I did not get dressed and spent the afternoon on the sofa. At dinner time, I struggled to sit at the table because I felt so weak. During the afternoon and evening, for want of anything better to do, I spent some time reading an essay of my daughter’s in order to check her punctuation. On a good day, I would have no difficulty with this at all. However, on Sunday, it took every last scrap of my remaining energy. I probably shouldn’t have done it. I went to bed with a headache.
On Monday morning, I still couldn’t walk and I still felt dizzy and sick. If you think how you might feel if you were really, really nervous… and going down with the ‘flu at the same time… then you might begin to get the feeling of what I am talking about. Again, I didn’t get up until lunch time. By late afternoon, I was able to wander a few paces out to the garden, where I sat on a small stool in the sunshine and planted two courgette plants. After that, I had a bath. That was it – the sum total of my physical expenditure for that day. The clean dishes remained in the dishwasher. The dirty dishes remained stacked up on the side. I did spend a bit of time on my laptop, but I also spent a lot of time with my eyes closed, resting. I was also having a lot of trouble seeing clearly. My glasses, which seemed fine last week, felt as if they didn’t belong to me.
Yesterday morning, I felt worse than I did Monday. I tried getting up three times before I was successful. I stayed on the sofa pretty much all afternoon and eventually felt well enough to read a book. I also spent a short while on my laptop.
Over both Monday and Tuesday, my communication with others virtually ceased. I said little more than a couple of dozen words to my husband. I sent the two emails necessary to rearrange an appointment. I made maybe half a dozen short comments on Facebook. That was it. For most of the day, putting words together was just too much effort. For some reason, that I don’t fully understand, it takes a lot more brain power than just reading.
This morning, I felt somewhat better. I had a morning appointment for a B12 jab and (unusually) felt a bit wobbly when I came back from that. However, generally speaking, today has been a better day. The dirty dishes have finally found their way into the dishwasher. I’ve repotted my pepper plants. I’m writing this. And I can see again. Things are looking up 🙂
To members of close family, all this is only too familiar. A few of my close friends have seen me in a similar state of collapse. Most have not. They see ME and yet they do not see ME (though some will remember the days when I only ever went out in a wheelchair). The fact is that most of the reality happens behind closed doors, leaving many with the impression that I’m a good deal more able than is actually the case and that ME is mostly about ‘feeling tired’.
This time, the cause of my collapse was primarily nervous tension. Basically, I was stupidly nervous about playing my flute in public. That’s all. But it set off a domino effect in my neuro-immune system, causing it to run away with itself. Something, somewhere, forgot to turn itself off. I can suffer the same kind of effect from a long car journey or just from walking more than about 150m (total) in a day on several consecutive days. Earlier in the illness, even just watching a film could do it – and the effects would last much longer. Earlier still and the kind of day I’ve described here would have been counted as an extremely good day. Indeed, I might have longed for such days.
Some doctors have commented that people with ME are less able than AIDS or cancer patients. When I have heard this, I have always assumed that they were referring to people with ME who are considerably less well than I am now. There are, for example, people with ME who are unable to move at all and are fed by means of a drip. I am very far from being in that state. In fact, these days I tend to think of myself as doing pretty well. I don’t suffer much pain any more and I rejoice in the fact that I can do so much more than I used to be able to do. So I don’t even think about comparing myself with a cancer patient.
However, 2 months ago, my father died of advanced prostate cancer. I accept that he was very fortunate. Whilst he suffered a fair bit of pain and discomfort in the last 6-8 months of his life, he was able to remain active almost to the end. Less than three months before he died, he played a round of golf. Two or three weeks later, he was still able to potter around the kitchen for much longer than I am able to and was still happily trying to solve a complex maths problem of the sort I have long forgotten how to do. I am extremely grateful for this. I know some people have it a lot worse and I would not have wanted him to go through months of debilitating illness. I know only too well what that’s like. Nonetheless, I found it extremely sobering to be faced with the fact that it was only in the last 6-8 weeks of his life that he was less able than I am now. It’s a reality I prefer not to think about.
We see and yet we do not see. Much of the reality that is ME remains hidden. Those who suffer most spend most of their lives out of sight and out of mind. Whilst cancer research attracts a huge amount of support, rarely do we ever hear of people raising money for ME research. Yet…
- ME affects an estimated quarter of a million people in the UK, making it twice as prevalent in the UK as MS and three times as prevalent as HIV or breast cancer.
- It is one of the most common causes of long-term school absence.
- More than half of sufferers are too ill to work, a quarter severely affected to the point of being bedridden or housebound, often for years or decades. This amount to billions of pounds of lost productivity not to mention welfare costs each year globally.
- Although the cause is not currently known many neurological and immunological abnormalities have been found. The symptoms are extremely debilitating and the most severely affected may be tube-fed, oxygen dependent and require round the clock care.
- There is currently no cure or proven treatment for ME. The NHS offers only psychosocial treatments despite substantial evidence to suggest these treatments may be harmful for a significant percentage of patients.
- There are no recognised tests to aid diagnosis. Yet delay in diagnosis or inaccurate advice in the early stages of illness dramatically increase the likelihood of permanent disability.
- The mortality rate for ME is estimated at around 3-6 percent. The recovery rate is estimated to be similar. Lack of adequate research mean no accurate figures exist for either.
- Biomedical research is chronically underfunded compared to equivalent conditions. More money is spent globally on research into male pattern balding than is spent on ME research.
- Studies have found ME to be as/more disabling than MS, Lupus, heart disease and cancer. In its severe form, specialists have described ME as being more disabling than AIDS and terminal cancer until the final days of life.
This is why AYME have called their campaign for ME Awareness Week, ‘Now you see ME’. What is not seen needs to be seen.
So, now, if you have seen, please, please help others to see. And, if you are able, please also give something to ME Research (or the equivalent in your country). There are ‘hidden’ people out there who are desperately in need of help.