Experience is cheap

Today is the eleventh anniversary of the day I tragically succumbed to the Dreaded Lurgy. Last year, you may remember, I doodled. I missed last week's Disability Carnival over at David's, which was about Top Tens. The next one at Reimer Reason is about resilience and I guess this ties in with both of them in a roundabout fashion:


My Top Eleven Things I Wish Someone Had Told Me About Chronic Illness Eleven Years Ago, Given That I'm Not Up to a Snappier Title.

1. You are not a medical condition. Medical fact and theory can be useful, even life-saving, but they do not tell you anything about yourself - even when you feel they have consumed the life you used to have. Almost all chronic illness is slightly mysterious (if we knew exactly what was happening in all cases, it might not be so chronic) and there is a real danger of getting over-invested in medical theories and controversies. The thing to realise is that the medical side of things is about a condition you happen to have, not about you. This may sound obvious to anyone who hasn't been ill for any great length of time, but it isn't. As such;

2. Take breaks from the subject of illness on a regular basis. Depending on where you are at the time and how often you have to see doctors and other medical professionals, you may manage the odd day or you may go for months without thinking, reading or talking about illness. This takes conscious effort and discipline. You still have to deal with it, but it is not a subject at the forefront of your consciousness. When it's there all the time, it becomes very difficult not to be miserable about it.

3. For goodness' sake, get the help you need! Do you know how much time I wasted because I refused to use a wheelchair, I felt a laptop was a luxury even when I couldn't sit up in a chair for any length of time and I wouldn't ask for help with all sorts of thing? Was there anything noble about this resistance? Nope. Just get on with it. On which subject;

4. It is useful to review one's attitude towards personal strengths. Sometimes you can think you are fighting the good fight when really you are running away from the problem. You might prefer to push yourself instead of resting or pacing, thinking this the brave thing to do when in fact it is slightly idiotic and nobody is going to admire you for running yourself into the ground. Eventually, you may get to a place where you don't think about your illness very much at all, but you don't get there by pretending it doesn't exist.
5. Balance is everything. Living with chronic illness and establishing a lifestyle where you can do as much as you can without exacerbating symptoms requires a very tricky balance of trusting and challenging yourself. There is danger in not listening to your body and a danger listening to your body too hard (mine makes very eerie noises late at night when the rest of the world is asleep). An activity diary, where you take brief factual notes about what you've been up to and how you're feeling each day is a really good tool during spells when you feel things are out of control; if there is any relationship between activity and your state of health, the sooner you figure it out the better. I wrote a bit about this in The Goldfish Guide to Being Reasonable (to oneself)

6. Approach alternative therapies with caution. Especially when you're desperate that stuff can suck you in, steal your money, give you false hope and then make you feel useless when you aren't miraculously cured. I've written about this before.

7. Your happiness is much more important than your health. The two are frequently interrelated, but sometimes one does have to make a decision between the two. For a long time I felt guilty about doing things I enjoyed which might cost me healthwise, guilty about pleasurable food that someone told me might be bad for me, but the only person you have to answer to with this stuff is yourself. And whilst there is a point in a life which is happy but unhealthy, there's not much point in a life which is unhappy but healthy.

8. You mustn't stay angry with an illness or indeed the body which you may feel has let you down so badly. It's never going to say sorry, buy you a bunch of flowers and attempt to make it up to you. Anger is a natural part of the process of mourning, but it's often something people neglect and allow to fester such that they look back and have a tremendous sense of injustice about the way that life has turned out. Justice simply doesn't enter into it.

9. Nobody is going to really understand what you're going through and some people won't understand at all. This used to cause me immense frustration, not helped by the Lurgy arriving in my teenage years when to feel tragically misunderstood was the default position. My policy since has been to make sure the most important people have the most important information and not worry about the others. Most people who completely fail to recognise your limitations usually aren't trying, and that's a problem they've got, not you. See Telling it how it is for some advice as to getting this stuff across.

10. Keep a look out for other health events. Sometimes there is a temptation to put everything down to the one condition and dismiss every new symptom, to respond to every limb that turns green and falls off with a shrug and a sigh. This can be a big mistake. In particular, one has to look out for clinical depression (if indeed, that isn't your chronic illness). It is normal to have volatile moods when you are living with fatigue and pain and it is normal to respond with sadness to a dramatic change in life. However, this so easily slips into becoming an illness of its own. Depression reeks havoc with fragile physical health as well as being one of the most unpleasant and dangerous illnesses one can possibly have. On which subject...

11. Don't kill yourself. Whatever you do, don't do that. Not that this was a mistake I made - at least not successfully (would freak you out if I had, wouldn't it? Here you are reading my blog and I could have been dead for years!). I imagine lots of people contemplate suicide at some point during the early years of chronic illness (and later), but it is a rather silly idea. If you are capable of ending your own life, you have nothing to lose by sticking around and seeing how things turn out - you can always do it later on.


On that optimistic note, I best be off. As previously mentioned, this isn't merely the Dreaded Lurgy Day, other notable things happened on this date as well. And this time last year I phoned my sister, who said it was a bad time to talk. Rosie never says it's a bad time to talk. The next day, Alexander emerged into the world. All going well, I get to celebrate this fact with him tomorrow.