Short post. I’ve been unable to frame an entry here ever since it came home to me how impersonal this weblog’s become. I don’t talk about how ill I continue to be, or how very anxious I am so much of the time, or terribly unhappy with regards to my gender presentation, and it’s dishonest (to myself, I guess?). Instead I’ve been coming across as some confident gender warrior with a scheme when I am schemeless, or political campaigner in a mask, when really I’m clueless what I can do to arrest the decline of real science in the medicine of M.E. in the UK. I’ll try and reframe myself and this weblog when I can see through the current fog of anxiety and self-disbelief and unhappiness, and I get a bit weller again. What must be hardest for those who know me must be the constant ringing of changes. Online, you can often present as cheerful for as long as you can type, and you can avoid dwelling on your disastrous mood or fears if you can type quickly: and when the physical or anxiety crash comes you can scoot off. But things really are very much as they were when I typed out the email that really started this.
In the meantime I’ll have to make do with others’ words as clothes which fit well enough. I was never so much of a Billy Whizz – never the racing do-it-all – but I think with hindsight my mind’s been furiously and secretly playing several tracks internally at the same time since I was very young: learning to present the wrong gender to fit in even from before you learn what “gender” means. Same Whizz, different source. Minnie the Minx pretending to be a Billy Whizz. Or a family of Billy Whizz, Soppy Susan and Fatty Fudge (a not entirely fair way of finding out if my brothers are reading this).
So the following article expresses my current situation well: self-doubt, and the difficulty for those around you to understand the changeability and nature of this illness – thank you Jane. I’ll reprint it below under “Continue Reading”, but for those who want to read related comments, which stray back into the dreadful and worsening UK politics of “treatment” just now, the original article is here: Is it M.E. or is it me?
Jane Horton 31.01.2005
For the last year I have been unwell, so unwell that I have stopped working and have to spend much of the day horizontal. This has been difficult to come to terms with. When I was a child I read the Beano, and fantasised about being Billy Whizz…
… I really wanted to be Billy: he was the one whose legs were so fast he really could do an incredible number of things at once, and still be home in time for tea. In my ‘normal’ life I was a modified Billy Whizz. I packed in working something like 60 hours per week, including about 20 meetings, a couple of lengthy trips, along with feeding my family, helping run a community group, and keeping my recreational activities going, constantly setting myself ambitious targets. I loved my job, and was really committed to all the things I did outside work too.
It is only now, looking back, from the peace of the sofa and a single book by my side, that I think I was asking for trouble. One of my symptoms is loss of balance, not severe, but enough to necessitate propping myself against walls and furniture quite frequently. A friend recently commented ‘Ah! When your life is in balance, you’ll get your balance back’. Though part of me thinks this is nonsense, another part of me knows this is true; what was balanced about flogging myself the way I did? Now that I am in a different world, away from the fast pace of most of my friends’ working lives, I wonder, if I will I ever be able to tolerate that existence again? Another thought that troubles me is that somehow I may have ‘used up’ all my lifetime’s energy, or at least, most of it, and so what little I have left will have to be eked out very carefully.
It is not all calm and peace as I lie on the sofa reflecting on what has happened. I am devastated. This month my pay gets cut, although thankfully not completely. I am worried about how to pay the mortgage and how on earth I am going to cut back while continuing to pay for the alternative therapies that have become part of my life. I spend a lot of time worrying about the attitude of others towards me and my illness. I know it is mad, but I care what others think. One acquaintance believes all I need is a ‘tonic’ (what’s that?), another thinks I am suffering from clinical depression, (well having this illness is certainly enough to make anyone depressed), while another friend who has the good fortune of never being ill, can’t quite come to terms with the fact that I really am ill.
But I guess it is hard for friends to get it right. I hate it when people ask me how I am; am I expected to give an honest answer or not? On the other hand I’d probably feel indignant if people stopped asking me how I am. What I need is for people to demonstrate that they understand that I am not well, without relentlessly asking me a question to which they must know the answer. Even worse than asking me how I am, people say cheerfully, ‘You look great!’ or ‘You look loads better’. I haven’t worn make up for months and months. I don’t want people to think I am better than I am. If I feel awful, and I want people to notice that I feel awful. In fact I want permission to be bad tempered, grumpy and self-centred. But you don’t get pats on the back for sticking with your feelings. Rather, I feel pushed to demonstrate a positive attitude in the face of my misery, so I try, though frequently fail, and can be hell to live with.
Friends, of course, want me to get better. They just want to wave a healing magic wand over me and are disturbed at seeing their once energetic friend so reduced. It is the lack of clarity about how long the illness will last, and the possible long termness of it that bothers them. ‘You’ll be better by the new year I’m sure!’ (Really? How do you know?). I feel under a lot of pressure about this anyway, without friends adding to the burden. I want to go back to work, I want to have fun, I want to earn money, I want to be fit and vibrant, I want to be able to say to my friends – and mean it – ‘Yes, I am getting better, I really am’. Everything about society is geared towards wellness, getting better, being fit, and performing. This makes me feel like a failure. Everything stacks up to make you feel as though you have personally failed when you are ill, but that’s ridiculous. I didn’t set out to be ill, but rational or not, I feel guilty and ashamed of being ill.
I feel as though my body is inhabited by a joker who enjoys playing games of the nastiest kind, and is having a really good laugh at my expense. The first trick is to make many of the symptoms of the illness invisible …… most can’t be confirmed in blood tests and I sometimes look quite well. The biggest trick of all, the one that is hardest to handle, is not knowing how long the illness will last, not even roughly, and the fact that I go through phases of relative wellness, enough to make me really think I am probably getting well, enough to have others think I am getting well, only to crash back into a helpless stupor. I still think I’m getting better every time I improve. Yes, my memory has been affected by the illness, but I have a total blank about the fact that each time I have improved, a relapse has followed. I maintain unfathomable optimism each time I begin to feel better, and start limbering up to behave like Billy Whizz again.
Most people recognise the label ME (Myalgic Encephalomyelitis) for this illness, though this is the least preferred label by the medical profession, and there are many other related labels including PVFS (Post Viral Fatigue Syndrome), which is generally what it is called when you have had the illness for six months or less, CFS (Chronic Fatigue Syndrome) and CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), when you have the honour of holding the ‘over six months’ badge. I heard Barbara Windsor talking about an illness she had for two years on the radio recently. She had something related to CFS, the Epstein Barr virus, and I felt the words she used described the illness well. She said it as felt as though her body had been shattered, or that it had had a nervous breakdown.
The predominant symptom of this illness is debilitating fatigue. It’s real enough. Climbing stairs can sometimes feel like climbing a mountain, and sometimes my arms ache so much I can’t hold a newspaper up for more than 30 seconds to read. My eyes start closing if I haven’t had at least one lengthy afternoon snooze. Perhaps I shouldn’t be intolerant of friends not understanding the extent of the illness though, when I query it myself. Despite all the evidence I frequently wonder if it’s in my imagination. It’s so unlike me that I’ll challenge myself, ignore my symptoms and just push on, and on, trying to ‘be normal’. The usual outcome is that I have to spend the next day or day after in bed. CFS sufferers normally pay for exertion 24 to 48 hours after the effort. For the first few months of the illness, I made the mistake of setting myself deadlines. In the absence of work, I began treating my illness as a project. ‘I’ll aim to be back at work part time in January, and these are the steps I’ll take to get myself there’. Deadlines, I discover, are about the worst thing I could tease myself with, more like aiming at failure.
The prevalence of the disease is such that most people I have talked to about it have heard of it, and indeed most know someone who has had it or has got it. Statistics on the illness are not very reliable because so often the illness remains undiagnosed. However, it is clear that it affects at least twice the number of women as men, and around one in 100 people are affected by it at some point in their lives. That’s quite a lot of people…. and yet, it feels that there is still a lot of mystery surrounding it. I have heard several specialists acknowledge that most people with the disease seem to have been very busy people or ‘doers’ before becoming ill. I wonder about all those ‘indisposed’ Victorian ladies we read about? Did they have CFS? Certainly it seems possible that Elizabeth Barrett Browning did.
I have been given so much advice since being ill. Look on the web and you are overwhelmed by advice on therapies of all sorts. Who knows where to turn? The worst thing is that people are very insistent about their particular favourite therapy’s benefits and that it should be taken up, whatever the cost. I have chosen to go with acupuncture and cranial-sacral osteopathy. I try to ensure I have a good diet but I’m blowed if I’m going to make myself miserable by going on a special diet on top of every thing else I have to suffer, apart from doing obvious things like cutting out caffeine. I’m sure the therapies I have chosen are benefiting me but God knows how, perhaps just because I find the process of each visit soothing. I trust and like the therapists, and I feel that at least I am doing something constructive, and have a sense of well being when I leave. In contrast to the range of therapies available, what the NHS offers is pitiful. It is clear that the most positive things anyone with this illness can do is to rest, rest and rest some more, and pace any activity very carefully. It is also clear that anyone who accepts that they have the illness early on, and behaves accordingly, has a much better chance of making a full recovery. This of course relies on early diagnosis, and support to accept and learn to live with constraints of rest and careful pacing. Considering the large number of people with this illness that are on benefits, surely it is in the nation’s interests to support those with the illness much more quickly and more fulsomely than is currently the case? At least in my city there is a centre that offers some support for patients with chronic illnesses. The trouble is, the waiting list is so long, if you weren’t chronic when the appointment was booked, you will be by the time your appointment comes up!
There is a silver lining to my state of introspection and debility. I am learning. Coming to terms with the fact that it’ll take a long time to recover is hard, and my process of acceptance is slow. Acknowledging my own new limitations and learning to say no is something that can be done with dignity; I’m working on it. Being lazy, resting, and not lifting a finger all day is actually the bravest thing to do while in this state. Being frail and vulnerable has given me new insights, and I don’t want to lose these when I do return to the world that the healthy inhabit. I spend more time with my daughter, and suddenly I am reading novels again and finding the time to chat to friends about them. I want to return to the healthy world, but I don’t want to lose these things when I do.