Why I can't talk to my doctor

I can't talk to my doctor because I'm British.

Not newfangled British, you understand, not the kind that runs about emoting, swearing and binge drinking. I was brought up in the old school, taught to respect authority and not bang on about oneself. If someone asks me how I am I'll probably say, "Fine" and ask them how they are. This is one reason for forcing myself to do this blog; a kind of therapy. You see, there are downsides to being my kind of Brit, especially when you're a slightly paranoid example of the species. One of those downsides is that seeing a doctor tends to go something like this:

Doctor says: "Hi, how are you?"

I hear: Quick as you can, please, I've an awful lot else to do.

I say: "Not so bad."

What I mean: I'm in agony, I've been in bed for a week, please help me!

Doctor thinks: Why are you here then, timewaster?

Doctor says: "So what can I do for you?"

I say: "Well, I've been a bit tired lately, and I keep having these symptoms ..."

What I mean: Two days ago I could barely walk, getting here was awful, I've so much to do, please help me!

Doctor thinks: Uh oh. Doctor's heart sinks. Doctor smiles reassuringly.

I see the smile, think: You think I'm a timewaster, don't you?

I say: "I just wondered if there was anything I could do, you know."

Doctor thinks: God give me strength. Where are the sugar pills?

Doctor says: "Well, maybe," and resignedly starts running through the backup questions.

What happens next depends on the doctor. If they ask about how much exercise I take, they'll prescribe me more. If they ask about family history, they'll discover the streak of depression that runs through the Bells, and decide I must be depressed, whether or not I'm actually thinking about killing myself at the time. If they ask about the symptoms, CFS has so many of those that I could end up being diagnosed with anything from anxiety to gastroenteritis, depending on which disgusting bodily malfunction it occurs to me to mention at the time.

It's not the doctor's fault. I just can't seem to communicate, however hard I try. I'm making a list for my next appointment, in the hope that it'll help. I rarely get more than three items into a list before curling up in apologetic silence, but perhaps this time it'll be different.

Bit of a lull there!

That's the trouble with blogging. You have to be well enough to do it.

I can't help thinking this is an immune system problem. All I did was catch a cold, an ordinary cold, but as well as the cold symptoms the CFS completely flattened me. Light and sound sensitivity, vile myalgia, inability to stand up straight ... and as the cold has dissipated so the symptoms have improved. I've been taking bucketloads of vitamin C. I also tried beta-glucans for a while, but they didn't seem to be helping after a bit so I stopped them.

Next appointment in two days' time. I'm being assessed by a specialist, apparently. Will they have answers to my questions, I wonder?

Reply to Penny's comment

Hi Penny!

Thanks for your comment. Gosh, I'm all excited to have a comment :-) And thanks for the sympathy too!

I don't know how the treatment'll pan out, but it could be a challenge. I live in Warwickshire, but I've got to go to Oxford, apparently that's the nearest centre for specialist treatment. Compared with some unlucky souls my CFS is mild, but even so driving to Oxford and then maybe catching a bus or two is something I'm not looking forward to. Guess I won't be doing much for a few days afterwards ...

More resources

An American site, fightingfatigue.org looks to have loads of info. Try the Articles tab -- this woman has been working really hard to gather dataon sufferers' behalf. Are they more clued-up about CFS in the States?

I particularly recommend the article called The Psychological Component of CFS -- three cheers for someone who doesn't think this is all about depression! As soon as my doctor heard about my history/family history of (mild-to-moderate) depression, it was like a reflex: here, have some antidepressants. I'm not depressed at the moment; believe me, I'd know if I were! Moreover, I've had depression on and off for years, typically when life isn't going too brilliantly (like when I was working for the boss from hell), and it doesn't seem to have anything to do with causing this CFS. Life's good just now, and I've many blessings to pore over and polish; it's just that the view from bed is getting a little familiar ...

Not sure about the acronym CFIDS though. Made me think of John Wyndham.

Pacing

Pacing, I gather, is the principle whereby you work out your limits, start by doing that much per day and no more, then gradually work up, doing a little more each time. The analogy I've come across is with a car running out of petrol; CFSers have less in the tank to begin with.

Okay, I can grasp that. Thing is, cars have a little dial to tell you when the tank is nearing empty ...


... whereas with CFS you only find out once you're stuck in the middle of the M6. Or in my case, Sainsbury's.

On the one hand you're told not to do too much, to avoid the boom and bust cycle. On the other hand you're told not to do too little, because the body adapts to inactivity. How on earth do you find the golden mean? My energy levels vary hugely from day to day, for no apparent reason. I haven't a clue what my baseline is, nor how to know when I've found it.

Still, here's hoping it'll all become clear when the experts tell me what to do ...

CBT

Before too long, I hope, I'm due to start a programme of treatment -- or, more accurately, a programme of learning how to manage CFS. It'll include cognitive behavioural therapy (CBT) and pacing, which I understand is the recommended approach. My reading so far (see previous post) suggests that these methods teach you how to work within your limits and gradually extend them.

Perhaps I'm prejudging here, but am I the only one who feels a bit doubtful about this? Take CBT. It teaches you how to recognize and change negative thoughts, so that you learn alternative ways of thinking about your condition. So who exactly decides which thoughts are negative?

For example, I mentioned I've been reading patient group websites. They're very positive, very encouraging -- and after a while I found them incredibly depressing. All those kind well-meaning words from friendly groups inviting me to join in, to take heart, to accept my altered situation and think positive. You dear kind people, I know you're right, but I don't want to be a patient! I get the creeps when invited to join any group; that's just the way I am.

Even if I could, I don't want to change my personality to fit somebody else's idea of what's good! It feels too much like social control, or mind control. There should be room for all kinds of people, even grumpy antisocial ones!

What I want is not to have this bloody thing. Two in a thousand: that's an estimate of how common CFS is. Why do I have to be one of the two?

Reading matter

Late last year my doctor decided I might have CFS. Over the years I and the NHS have been through a whole lot of options, including anaemia, diabetes, stomach ulcer, gastroenteritis, thyroid dysfunction, anxiety, depression and breathing disorders. I've been recommended dietary changes (it's not like I stuff myself with junk food; the Bell fridge has known the odd green vegetable). I've tried meditation and breathing exercises; trouble is every time I concentrate on my breathing I start getting a panic attack. Then there was the injunction to take more exercise, so I took up jogging, which may have made the CFS worse but certainly didn't make it any better. It also did my knee in, so that stopped that. All in all, I was pretty relieved to have any kind of label, even a provisional one.

So I went home, of course, and started looking things up on the net. The ME Association turned up, and a friend recommended this article from Prohealth. There's lots else out there; let me know if you've found anything particularly useful. I've waded through tons of offers for dubious potential treatments, but they all look like snake oil. If you have CFS, what works for you?

When I got the formal diagnosis, the friendly immunologist recommended a couple of books. Based on their Amazon ratings, I chose the one by Campling and Sharpe. So far I've read the first seven chapters. It's clearly written and laid out, easy to follow and not too much at once. I've ground to a halt at the moment (more on that later), but for all that I'd recommend it.

The afternoon after my diagnosis, being a scientist by training, I went to PubMed, one of the big databases of scientific journal articles, to read the abstracts of papers on CFS. It's "a profound and disabling condition", apparently. No shit Sherlock. It's complicated. They don't know much about it. Lots of ideas, and lots of depressing statistics about recovery rates. After a while I got very, very fed up with reading about what it was probably doing to my body, and my brain, and all the other things I might be more likely to get thanks to having CFS. Still, there was one particularly interesting paper which sounded a bit more hopeful. I'll post the abstract.

Welcome to Plasticine Spade!

Welcome to Plasticine Spade, my blog about living with chronic fatigue syndrome. I've just been diagnosed, and soon they tell me I'll be starting treatment. In this blog, I hope to share my journey -- through treatment, hopefully to recovery -- with anyone out there interested in CFS.

I've only just got the label, off a friendly immunologist, but I reckon I already know quite a lot about living with CFS, because you have to do that for at least six months before you get a diagnosis -- even if your doctor's super competent and knows exactly what they're doing (mine didn't). Besides, I've started in on the reading list and the web search ... links to follow.

Why the title? Because living with CFS is like being a plasticine spade. A person with CFS looks okay -- if you don't watch too closely -- and a plasticine spade looks okay, even on the first push. But as you keep pushing it wilts and warps and crumples, and if you push more you end up with something that really isn't fit for purpose. That's CFS. You look okay, but when you try to do stuff ...