At the weekend I got an unexpected letter from my cardio consultant (you may recall that I’d previously written to him pulling out of all the planned tests because I was simply too ill to attend the hospital). Rather than telling me to sod off – which I expected – he asked me to let him know when I felt I could deal with the tests and “we’ll try and revisit the situation”. Not a guarantee, clearly, but better than I’d anticipated.
It’s not quite that simple though, as my reply explains:-
Dear Dr. Xxxxxx,
Thank you for your letter of March 7; it’s much appreciated. I fear, though, that I might not have explained myself adequately last time. Nor would I have you think I’m in denial – I am all too aware of the seriousness of my situation. My main problem is that some days I have a very narrow window for activity, and most days I have none at all. I am, for all practical purposes, housebound.
When – if – my window of opportunity happens is unpredictable, but more often than not it’s just an hour or two around midday (yesterday, as things have turned out, it was most of the afternoon, which is exceptional, and I’ve taken the opportunity to cook for the freezer while I could and, like everything I do, the time taken was mostly rest breaks).
The two apparently insurmountable problems are exhaustion and severe pain, especially pain, which contributes largely, via lack of sleep, to the exhaustion, and for which I have never been able to get adequate medication (Co-codamol, frankly, is a bad joke – I’ve barely had a moment when I wasn’t in serious pain since 1986).
In addition, if I have any sort of appointment I need to rest the day before, and probably the day after (possibly much longer, there’s no way of knowing), and it can take me 4 hours or more just to get ready.
I cannot possibly, as a result, keep an appointment for 09.30, as I would have to start getting ready about 05.30. As I often don’t get to sleep before02.00 or 03.00 (pain keeps me awake), that’s simply not feasible. Nor can I keep two appointments on successive days – it simply isn’t doable.
My last appointment with you, thanks to that entirely avoidable hike to the Path Lab** resulted in a relapse from which I’m only now beginning to recover (prior to my current heart problems, that would have put me out of action for several days, not months – a deeply worrying development). I am, though, still too weak to use my manual wheelchair (despite it being an ultra-lightweight titanium model).
**To try and put that in perspective, in the 70s and early 80s, with backpacking, and rambling I walked well over 1,000 miles in an average year, and around 3,000 miles at the peak in 84 (sounds a lot, but almost 2,000 of that was simply walking 8 miles a day to work and back). Now, even taking diuretics wipes me out, simply because of the sheer number of times I have to walk the whole six yards to the bathroom. It’s quite ridiculous, on a number of levels.
On the plus side, I now have a new powerchair, thanks to tax rebate, so I am far more mobile than I was, but that does leave a different problem. Had I kept the appointments I cancelled/missed, it would have cost me almost £100 in taxi fares – that’s simply not sustainable, and as far as I’ve been able to establish (information available from APH PALS – zero), none of the free alternatives can guarantee to get me – plus my chair – to appointments on time.
I suspect that all this might sound very negative and/or obstructive to you, but this has been the reality of my life for 27 years. I also have to confess that, after almost 30 years of being treated as a hypochondriac at APH, to be suddenly taken seriously shook me to the core.
So, all that leaves me with a few questions. Are there any tests that will (a) not make me worse than I am now, even temporarily** (it’s over a year since I’ve been able to look after myself properly, if at all, and there’s no-one to pick up the slack if I crash), and (b), how likely is it that tests (non-invasive), will suggest a way to improve my quality of life, which is frankly dire (better drugs than anything so far prescribed, for example, would be a personal priority, or are they likely just to confirm what we already know?
**My condition really is that fragile, and getting more so almost by the day – I’m going downhill so fast I need skis.
And, realistically, would it be possible for you to accommodate my limited window of opportunity?
So that’s what I’m sending tonight. I can’t fax it during the day as, when his secretary answers and hears the modem’s white noise, she just shouts over it instead of switching on the fax machine (Arrowe Park Hospital apparently can’t provide a dedicated fax line, or a device to automatically switch between voice and fax calls).
And before some bugger suggests it, no, putting myself out and making the effort to keep appointments isn’t the issue here – the issue is one of almost complete inability to do that.
Likewise, it’s common knowledge that I go to the pub every Thursday – I get a taxi to the pub, a taxi back. In the meantime I sit at the bar. That’s in no way analogous to submitting to tests which are psychologically and physically stressful. And it can still take hours to get ready.