Thursday 19th February - All about ME!

Where have I been all these weeks?

Not properly on this planet, that's for sure.

 I'd left my current book downstairs last night, so amused myself by reading last year's diary entries for February. They read the same as this year - "week off work with chest infection" blah blah blah!

Anyway, it's half-term at the moment, which has meant a break from teaching, or trying to teach, or discovering that I'm not well enough to teach. So I have spent the week travelling up and down to London for routine 6-monthly hospital clinic appointments. (Looking at my diary, that's exactly what I did in the February half term last year) I have to say that I was a little anxious as to how things would turn out. BUT, the good news is that the cardiologist, after getting side-tracked checking out the wonders of our modern mobile phones (he's still using a prehistoric thing with a KEYPAD, can you imagine) reviewed all the tests going back to 2007, and pronounced me stable and in reasonably good nick, all things considered. And he was adamant that I should keep on working, even though I was exposed to all the bugs and germs of the little people that I teach, that keeping active and busy was the best thing for me. Good-oh.

The chest consultant was of the same opinion; a little concerned that I had had three or so chest infections this winter but not alarmed. In spite of everything, the various lung function tests, and the "walk test" (walking up and down a measured length of corridor for 6 minutes and seeing how many metres I travel) produced similar results to previous times.

I am pretty convinced that maintaining a positive attitude to life is a major part of staying well. This is backed up by what all the consultants have advised over the fifteen years I have been in their clutches. Yesterday, my mother asked me if I didn't get fed up with this illness. Well, no, I don't. Not with the illness,

But

These are the three things that really do sap my energy and happiness

Sorting out the myriad hospital appointments and tests is a bit of a nightmare. I get them all lined up at sensible times on a day that suits me and causes tyhe least aggravation to the rest of my life, like over halfterm, or in the school holidays, and then letters arrive changing them all around. This is just a background, on-going hassle.

Sorting out my prescriptions - I take a colourful medley of pills and capsules several times a day, some prescribed by my GP, some delivered by one of the hospitals, another delivered by an independent agency on behalf of the other hospital. Keeping track of what I will need replenished, and when, is a major headache, especially when the independent agency has been really quite inefficient and needed a lot of interaction from me. That can be a real pain.

Fending off well-meaning advice/suggestions/opinions offered by friends and family is, weirdly, exhausting, in a way that everything else is not. Things like

"Poor you."
"All those horrible tests".
"You do too much."
"Isn't it time you gave up work, or cut down".

I know these type of comments are loving and sympathetic and well-meant. But...

A friend who also has a progressive disease (MS, in her case) made exactly the same point recently, so it's not just me. 

I've been pondering my reaction - and have come to the conclusion that the problem is that this kind of sympathy is all directed to emphasizing the negatives. Here am I, determined to stay positive, count my blessings, focus on what I CAN do, rather than what I can't.

In reply to this kind of sympathy, I don't want to agree with the implications "Yes, I am a poor thing, the tests have left me drained and exhausted, I'm tired all the time," because that is just NOT how I see myself. It's NOT how I feel. 

I want to say

"I'M NOT A POOR THING
THE TESTS ARE ON THE WHOLE USUALLY NOT A PROBLEM (although the tube down the nose for 24 hours must rate as the mankiest test so far)
I'M PERFECTLY SENSIBLE AND OLD ENOUGH TO MAKE MY OWN DECISIONS ABOUT WORK
I DO LISTEN CAREFULLY TO WHAT THE CONSULTANTS SAY AND FOLLOW THEIR ADVICE" 

and biting my tongue, making a gentle and appreciative reply, restating what I've been saying all along, is the really, really, wearing bit. 

Anyway, enough. Just one appointment left, with the Rheumatology clinic, sometime in April, and then it's all done for another 6 months.

I'm fine. I'm stable. I feel well and happy. I'm drinking a sherry to celebrate!