When I had my cardio appointment in September, I knew I’d be asked why I’d turned up in a wheelchair. This usually results in the whole thing getting off-topic, arguing with doctors who are utterly clueless when it comes to using wheels.
So this time I wrote a medical history, in chronological order of diagnosis, putting in red the conditions which have led to wheelchair use. I didn’t get involved in the same useless debate I’ve been having for the past 28 years – I just stuck it in his hand and asked him to read it.
This is it:-
Items in red all contribute to my being a wheelchair user. I was assessed and issued with my first NHS chair in 1986.
Bronchiectasis and asthma since age two, when almost simultaneous whooping cough and measles damaged my lungs.
FMS since my late teens (Dx Walton Hospital). Bad/severe pain in shoulders/neck.
Spinal arthritis (cervical spine) since my 20s. Profound discomfort rather than pain, and the noise can be deafening. Audible several paces away, apparently.
Osteoarthritis in left hip since age 32 (Dx Fazakerley Hospital and Birkenhead General). Now also in right hip. Massively exacerbated by…
Lightning Strike in 1983 which damaged many joints. My feet were also very badly damaged (the fatty pads, in the soles, that cushion the bones, were melted – or atrophied – opinions differ, so every step since has been like walking barefoot on a shingle beach). Pain can be extreme – it NEVER lets up.
M.E. since 1985 (Dx at RLUH 1996 – copy in APH file). Also a source of intransigent pain.
COPD since 1996 (Dx St. Cath’s), with onset of emphysema and Cor pulmonale.
Heart failure. Dx in 2011, (Dr. Leong’s team, APH, I believe), but never recorded on my file (of which I have an allegedly unredacted copy for that period). Subsequently confirmed by cardiologist Dr. Newall. Both COPD and the aortic valve problem (next), would predispose me towards heart failure and, of course the antecedents for the former go back to the mid 90s.
That I have symptoms of both right and left-side HF was explained to me at length during my last admission to APH, 14-19 August, 2014, with pulmonary oedema (a steadily worsening problem for much of this year). Despite this, and for reasons that elude me, Heart Failure Nurse Jane Egan denies it exists at all.
Aortic valve calcification & stenosis. (Dx mid 2011).
Angina, present sporadically since mid eighties. Getting worse. Oxygen-deficiency angina diagnosed at Stockport Infirmary, Summer of 1986 after Peak District rescue. GTN Spray – not on repeat list.
Bilateral Lymphoedema, present but mainly asymptomatic since 2005. Flare-up in 2012, and last year severity and pain were both off the scale, massively infected (ultimately with MRSA), and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. Right leg has large, and growing, ulcer just above the ankle, also extremely painful.
Addison’s Disease. March 2013, admitted to APH close to death after months of diarrhoea, vomiting and starvation (lost 35kgs) – all, I now know, symptoms of Addison’s.
Not exactly hard to understand, is it?
What the moron took from all that was that I’m a wheelie because “his legs hurt and he feels a bit weak” which is as insulting as it is crass.
And I never use words like “hurt” (or “sore”) – they simply aren’t descriptive enough. I tend to use “pain” or “painful” along with a qualifier for greater precision (if I say I have extreme pain, that is way worse than “a bit sore” for example), and “weak” doesn’t appear at all, FFS!
To add insult to injury I finally got a reply from my GP to this letter. Despite the fact that I detailed precisely what my problems are and what I needed to put them right, he says he doesn’t understand what I need and will I please explain – the subtext of which is “Three pages? Buggered if I’m reading that!”.
And that, boys and girls, is why medicine is a hobby that borders on obsession at times, because this is the sort of bullshit I’ve been saddled with since I moved to Wirral in 1984 – my very survival depends upon my being at least as well informed as my doctors, and better informed is desirable. Frankly, that’s not too hard, either.