Being a flake: Living with a fluctuating condition
I roughed out this article from bed over a week ago. It’s taken this long for me to have both the physical energy and mental stamina to type it up. Ironic, then, that I was writing about how hard it can be to manage a fluctuating condition…
When I was a teen, my best mate had chronic fatigue syndrome. We would often make plans to meet up, but often I would receive a phonecall just as I was putting my shoes on or getting ready to go out, saying “I’m really sorry, but I can’t”. I stuck with it – I trusted and believed my friend – but I didn’t really get it.
Now I’m in that position. I get it, alright. So let me explain how it is, why I can be unreliable and prefer to say that I will let you know how I am on the day. Or perhaps we made plans, had fun on one of my “good” days, and now you’re wondering if I’m really ill at all?
Weeks 1-2: I was ill, with exhaustion and a nausea that stopped me from eating. I thought “Ok, I’ll cancel plans, and when I’m over this bug I will reschedule everything”. No problem, after all everyone gets ill now and again.
Weeks 3-4: Shit, I’m still ill. I’m spending more time in bed than out of it. What’s going on?
Month 2: Think “I’m clearly still ill… I’ll see the doctor.” Of course, I can only get to see the doctor when I’m relatively well, so I can think coherently enough to make the appointment, and drive myself over there. My GP says we will “watch and wait”. So I agree, thinking “this is inconvenient, I won’t reschedule things yet, I don’t want to let anyone down.”
Then I had a good week. “Hooray! I am cured! Reschedule everything!”
A few days later the fatigue hit me again. Oh, shit.
Eventually you look back over your diary. In my case I had the horrible realisation that not only was I still ill, but that I was still getting worse. But I couldn’t just cancel life. So I arranged to see a few good friends again, with the caveat that if I was ill, I could take a raincheck on the day. However, some places – medical departments, hairdressers etc. – require advance booking. So I made plans, in the hope that they would work out. However, it was time to write to my GP, to let him know why I cancelled an appointment two weeks in a row – I couldn’t get out of bed. He needed to know how bad things really are for me, even if he couldn’t do anything about it other than repeat that we “watch and wait”, a phrase I have grown to hate.
You come to realise that you have no control over your life. And aside from the depression of not being in control of your health or your capacity to do things, you think “how can I take the power back?” Nobody seems able to help. It is now month 9 for me and there is no sign of my illness easing.
As someone who (also) has a long term disability (a painful joint condition affecting my mobility) I already knew about pacing: the principle of working within your limits, knowing that if you overdo it – whatever that may mean to you – that the next day will inevitably be a day of pain, exhaustion and enforced rest. Infuriatingly, I can’t get this theory to work in reverse…
So if I have a medical appointment, or even if I want to go out with friends, I know that I must keep the following day clear for recovery. But even if I rest for the day before an appointment, it is no guarantee that I will be alert and ready to go on the day itself! I don’t know whether I will be well enough to get myself across town to the hospital department, despite all good intentions. And last minute taxis are expensive!
That’s why I’m unreliable, a flake, or whatever you’d like to call me. I’m at the mercy of my health, but if I’m unwell it’s not because I’ve been irresponsible, overdoing it or pushing myself too far – it’s just bad luck. When I say “I’ll come if I can” or “I’ll confirm on the day” then you know that I want to see you and I’ll do everything I can to be there, but sometimes my will is not enough.
It’s not all doom and gloom. As long as you don’t want to meet me before 3 in the afternoon, or to travel far from home, then chances are good that I will make it. This week I’ve hosted a friend (who had a 90 minute commute to see me, bless her), visited a local art exhibition cum party, and been out for dinner with family. I’ve also spent a lot of time in bed, in pain, or both, but at least that’s not been the whole story and I’ve made some happy memories along the way.
Chronic fatigue is one of those conditions that people don’t seem to believe in, until it happens to them… I see friends and acquaintances thinking this, not liking to say it until I do, whereupon they look relieved and agree. But whatever the cause of my symptoms, the illness has certainly struck me down, and all I can do is work with it. Fighting will just wear me out, and achieve nothing.
Whatever their diagnosis, if you have a friend with a fluctuating condition, please give them patience and understanding in the knowledge that it is probably frustrating them far more than you can imagine. And your continued friendship and support is probably one of the things which is keeping their hope going.