I’m lying on a paper-covered couch having my knee bonged assiduously by the doctor.
My mum and I have waited for 40 minutes in a very efficient and cleverly process-designed hospital, sipping water we’ve brought (hottest day of the year). I’ve had my height and weight measured beforehand by a very friendly nurse, my blood pressure taken, my oxygen sats measured, and I’ve explained to the nurse that the urine sample I’ve provided in a cleaned-out shower gel bottle is tinged green because I take vitamin tablets and not because I’m alarmingly acutely ill.
Now the doctor is seeing me, and very thorough she is too, if not the exactly warmest of medics. Telling professionals where I work always has an interesting effect on them, and I am grateful that this is one where the effect is that she is going to talk to me on the level.
After the rubber hammer, she whips out a huge tuning fork. It is seriously a foot long, and I unconsciously wince slightly as I wonder what on earth she is going to do with it.
I don’t have to wait long to find out.
What she does is hit it on the chair to make it vibrate, and places it on the side of my foot. Then she tells me to say when I feel it stop vibrating.
I ignore the fact that I can a) see it vibrating and b) hear it vibrating, and I play the game properly, both feet. I feel like I’ve won a neurological prize because I can feel it stop.
There follows much twiddling of my toes and saying which direction she is pointing them in. Again, it would feel less cheaty if I couldn’t see them at the same time, but happily I can feel them at all times, and I’ve never had trouble knowing where my feet were unless I was really very very drunk. Which I’m not right now (or actually at all these days. Hey ho.)
I walk in a straight line, like the drunk test, after she’s listened to my chest, made me follow her finger with my finger and touch my nose, looked deep into my beautiful hazel eyes, taken my temperature, made me raise my arms in the air and hold them there, and smile broadly.
I emerge from behind the curtain and sit down again next to my mum. The doctor once again scans the full notes I brought with me (because I didn’t much fancy sitting there waffling and forgetting all the key points and symptoms, and also because I thought it would be useful to have a concise history of my historic episodes of post-viral fatigue and all the increasing fatigueness which has finally, finally bought me to the specialist’s door), and asks me a long list of questions, after commenting again on the usefulness of my notes.
“Would you like your mum to go outside?” she asks.
No, it’s fine. I don’t have much to hide from my mum, health-wise. I’m not remotely embarrassed about being asked if I’ve had sexual health tests, which is lucky because she shrugs as if to say “I warned you” and asks me if I’ve had a HIV test. I have, I say so, and that additionally all the GUM tests I’ve ever had have been spotlessly clear.
Still not embarrassed…
No I’ve never been pregnant, I’ve got a coil, and yes the big symptoms started before that was put in. I am not suffering chest pains, tingling arms, I haven’t had a stroke, nor “palpitations outside the normal”. I’ve shown her the charts of the scores of how I feel each day, and how much work I do each day. She asks me to rank my list of symptoms, and I do.
Eventually she has her diagnosis.
“CFS. Classic case by the sounds of it”
She writes a referral form for me to go on to the CFS support unit in my local healthcare trust, I’ll get a letter in due course, they run clinics in my home town. She suspects I will have already done some or a great deal of what they suggest, but it will be helpful nonetheless.
She writes the web address of their section of the local NHS website for me, on a specimen covering slip, which privately amuses me.
And off we go, back outside into the scorching summer.
I am quiet on the way home, glad that mum has driven me.
I already knew, with as much certainty as I could have, that I had CFS, M.E. – whatever you want to call it. I didn’t expect to feel as much relief as I do.
It means – that it isn’t in my head. It’s a real thing. I have a level of protection now. I can stop having to say “but I haven’t had it confirmed yet…”.
I didn’t want this. It’s one of the last things I’d ever want. In itself it isn’t a good thing.
But at least I’m in the system now. I feel like I’m not battling alone in the dark. I’ve made great leaps and bounds on my own. I’ve needed help with it for so long and it has taken so excruciatingly long to be seen that I’ve got on with it on my own.
I know I need help with exercise and diet, how to cope when I feel bad again. I will have people to help me this time if I have a relapse, and now I won’t feel like I’m taking the piss if I need time off work with it. I will try everything I can not to, but now I know – I have a real illness, it isn’t debatable, I’m not being a slacker – there are just things I simply cannot do sometimes.
I may use it occasionally to get out of or curtail things I don’t especially want to do outside of work – tenuous family events, occasions with lots of children – because yes, those things make me tired, and no, I won’t always be prepared to take the hit for other people. Sometimes I will because love is stronger than selfishness, sometimes I will push myself a little for other people and indeed for me. But not always.
Mostly I’ve got my head around it. I’ve been tired the last couple of days since because even though it wasn’t a surprise, it was still a big deal.
I can live with it. It won’t be completely all of me. It will be something I have to manage. It will not ruin my life.
By way of perfect illustration the next day, as we rather excitably planned our next batch of adventures, the ever-wonderful Prof – in his concise and astonishingly insightful way – managed to sum up how I want to be treated in a single lovely line.
“Until you tell me you’re tired, CFS doesn’t exist”