This, I hope, will be the last letter I have to write to my GP. I’m writing this because he is challenging how ill I am, and my contention that even something like vacuuming is, for me, on a par with running a marathon for someone as fit as I used to be. I chose the marathon because it’s something most people are aware of, and can relate to on some level. Not, it seems, my GP.
He also – descending to full-on fuckwit mode, because he’s seen me only about 8 times in 10 years, and most of that was during last year’s extended crisis – accuses me of abusing my meds.
I take 16 drugs, about half of them dangerous, plus 10 supplements used as drugs to treat my ME – currently a total of 56 tablets and capsules a day, plus 3 inhalers multiple times. Why the fuck would any sane person want to take more by abusing them?
This, I hope, with the addition of a suitable introduction, will set him straight:-
This is what’s wrong with me – in chronological order of onset.
Bronchiectasis and asthma since age two, when almost simultaneous whooping cough and measles trashed my lungs.
FMS since my late teens (Dx Walton Hospital). Constant, bad/severe pain in shoulders/neck.
Spinal arthritis (cervical spine) since my 20s (Dx Walton Hospital). Profound discomfort rather than pain, but that’s increasing, and the noise is deafening.
Osteoarthritis in left hip since age 32 (Dx Fazakerley – now Aintree University – Hospital, and Birkenhead General Hospital). Massively ramped up by being struck by lightning in 1983 (See footnote), now widespread (right hip, both knees, elbows, hands. Feet also very badly damaged. Pain can be extreme – it NEVER lets up.
M.E. (See Footnote) since 1985 (Dx at RLUH 1996).
COPD since 1995/6 with onset of emphysema (Dx St. Cath’s – x-ray showing “emphysematous changes”).
Heart failure. Dx in APH in 2011, but never recorded on my file (of which I have an unredacted copy). Confirmed by Dr. Nick Newall, cardiologist, APH, who said cause is uncertain. Diagnostic procedure carried a 24% risk of stroke. Declined and safer option requested. Not granted.
Aortic valve calcification & stenosis. (Dx mid 2011, St. Cath’s Cardiology)
Angina, present sporadically since mid eighties. Getting worse. Oxygen-deficiency angina diagnosed at Stockport Infirmary Summer of 1986 after Peak District rescue. Letter from Stockport ignored by my then GP, Dr. Brace, who refused to accept that anything was wrong with my heart.
Bilateral Lymphoedema, present but asymptomatic since 2005. Last year severity was off the scale, massively infected and terrifyingly painful. While the infections have been cleared up (took over a week of i-v Vancomycin in November 2013), the pain remains. As do two ulcers on the verge of merging into one larger ulcer. Currently colonised by bacteria but level of pain, the smell, and suppuration more suggestive of infection. There is also an injury, caused by the impact of a large, high-density polyethylene, chopping board, which refuses to heal. Both right leg. Left leg healed but fragile. Both very/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. Diagnosed almost immediately, based on the amount of Hydrocortisone, but I was not informed. Once stable, maintenance Hydro only (30mg daily, delivered extremely erratically while in APH both then and subsequently), until I realised what was wrong in March 2014, almost a year to the day, and having received confirmation of Addison’s agitated for treatment according to NICE , ADSHG and ACAP guidelines.
The cumulative effect of all of this is that everything I do requires massive effort, and results in extreme pain and profound exhaustion both during and after any activity. I drew a comparison with my normal activities and marathon running, with which you appear to take exception. I, however, stand by that.
While I have never run a marathon – my lungs rather got in the way of any form of running – for much of my life I was a touring cyclist, rambler and backpacker (long-distance walker not gap-year third-world hosteller).
In 1978 I backpacked from Koln to Salzburg – along the Rheine to Konstanz, and thence via Innsbruck to Salzburg. Mountains, which I can no more climb than I can run, were tackled using ski lifts – gaining height then holding on to it as long as possible by walking the ridges. Where this was impossible, I’d ride the Postbus until past the barrier.
At home I’ve walked the Pennine Way three times, the Peakland Way every Spring for about 10 years until 1984. In1980-81 I was chair of the Ramblers’ Association’s Merseyside and North Wales Area, and for the first half of the 80s, Footpaths Officer for their Wirral Branch, for whom, over the years from 1980 to 86, when I finally and irrecoverably crashed in flames with ME (and, subsequently, much else besides), I led scores of walks.
In 1982 I cycled the length of France from Le Havre, to Paris, to Lyon and South down the Rhone to the Camargue and the Med.
Through the 70s to 1984, weekends were often spent backpacking in the Lakes or the Peak District.
As well as all of the above, I undertook occasional challenge walks of around 40 miles, completed in under 12 hours, so I do know all too well, and far better than most people, what extreme physical exertion feels like, and my marathon comparison is perfectly valid.
Most trips were solo affairs, there being a shortage of disabled backpackers (I was, I believe, unique in that respect at the time, at least in the Backpackers Club). What I lacked in speed, and mountain-climbing ability, I more than made up for in strength and endurance – I was staggeringly fit.
All of this activity, while horrifying to consultants, was vigorously applauded by my physios. I firmly believe that had I not been so fit when the crash came, I would have died before now.
And every step I took, from 1972 onwards, when the OA set in hurt. I walked with an alpenstock then, on crutches and wheels since the Autumn of 1986, when I was issued with my first wheelchair, and it’s been downhill ever since.
I stand by my marathon comparison. In fact I’d say that what I did was far more strenuous than a marathon, which is over in hours at most – many of my backpacking trips went on for weeks, carrying a 45lb pack and covering up to 20 miles a day.
What little I am able to do now is equally exhausting and devastatingly painful. It has been so since the autumn of 1985, but was pushed off the scale by the explosion of persistently infected bilateral lymphoedema last year, and that pain still persists even though the infections have cleared up.
Exercise, by the way, is recommend for the treatment of Addison’s, 30 minutes a day for at least 5 days out of 7 is what I’ve just read.
Exercising for 30 minutes a week is so far beyond me it beggars belief.
Thanks to my diuretics, I pee 350ml on average every 15-20 minutes for about 6 hours, before it tapers off. Most days repeatedly going to the bathroom – all of 6 yards away – is impossible and I have to use the bucket from my bedroom commode instead (itself bought because at night the bathroom is even more out of reach). Perhaps that nugget will pull my lack of ability to do anything even notionally strenuous into sharper focus?
And now there’s the question of drug abuse, and I’ll start by stating categorically that I have never abused drugs. For Christ’s sake, I have to take enough as it is – why the hell would I want to take more by abusing them? Anyone who says I am, or ever have, is lying.
Dr. Onion trusted me implicitly (Dr. Jones, too), and accepted that I had more than enough knowledge to take care of myself if provided with adequate drugs. And I was, especially antibiotics (scores of 3g sachets of Amoxycillin at any given time), likewise Ventolin nebules, and steroids, too; enough drugs, in total, to stock a small pharmacy, plus oxygen. And the system worked perfectly.
As for my self-medicating with antibiotics, I don’t understand why you are making an issue of this – I have been doing so since 2003 or 4, and I wrote to you at the time explaining why.
At the time I was presenting with a respiratory infection ever 4-6 weeks, and every time had to submit a sputum sample then spend a week getting worse while waiting for the results (which I am doing yet again, for a sample dropped off by the District nurse on Monday, March 31**). Then when the results arrived, thanks to NICE’s paranoia, the antibiotics were never enough to get the job done. Eventually I got so sick of it I sourced my own Amoxycillin, which as a broad-spectrum antibiotic is good for most things, wrote to you explaining what I was doing (you were, as I recall, on holiday at the time I dropped off the letter). And I’m still doing it, as we discussed several times last year. It has never been a secret.
** Saturday, the 5th, I started a course of Amoxycillin, and in the light of my Addison’s I am also following the NICE guidelines by doubling my Hydrocortisone for the duration (which, as the infection had become well established, is taking longer than it normally would).
The thing is, I can identify a burgeoning infection by taste, smell, and colour, well before it becomes established enough to even make me wheeze, and can knock it down very quickly, within a week on average, often less (1g Amoxycillin t.r.d. for 3 days followed by 500mg t.r.d. for as long as it takes, which usually isn’t long at all).
There’s another aspect to the double dose of Hydro. Since the early 90s I have been unable to eat lunch as, very soon afterwards, I’d be semi-conscious (it was nothing as pleasant as sleep – I’d be vaguely aware of the world around me, but unable to respond to it). Nobody could figure it out (you referred me to a dietician who had no more idea than I did what was wrong), so eventually, I just stopped eating lunch and the problem went away.
Now, though, while taking double Hydro, I find I can eat lunch with impunity.
There must be a reason for that.
And – again – I do not abuse drugs, I never have abused drugs, and I never will abuse drugs, and I deeply resent any allegations to the contrary.
Specifically, in closing, I’d like to look at the question of Hydrocortisone use, and I feel that the only sensible course is to continue what I’m already doing, and abide by the NICE recommendations – it is, after all, what they are for – and those of the Addison’s Clinical Advisory Panel. The Addison’s Disease Self-Help Group also has guidelines, but these are effectively the same as those of NICE
Footnote re M.E. and Lightning Strike symptoms, many of which are shared. Items in bold are still present. Asterisks indicate severity, more = worse, @@ indicates Addison’s link :-
Ataxia (sporadic but increasing)
Chronic Fatigue*** @@
Chronic, often severe and intransigent, Pain****@@
Cramps in extremities***
Elevated Heart Rate** (Pre-dates Heart Failure tachycardia)
Excessive Perspiration @@
Eyes Sensitive to Light
Immune System Defect (yes, but it’s always been defective)
Inability to Cope (Er, what with?)
Inability to sit long
Lack of Communication skills
Lack of Coordination
Loss of Grip
Lower Sex Drive**@@
Numbness in Arms
Numbness in Hands
Numbness in Legs (alternates with severe burning sensation)
Out of Body Experience
Panic Attacks (Since I now have HF to worry about, these are back!)
Ringing in Ears
Shorter Attention Span
Stiffness and pain in Joints****@@
Suicidal (frequently, and probably understandably. Given that I can see no way of this ending well, I have my exit strategy already organised, against the time when I can no longer care for myself. Of course, it might take me off suddenly, in which case, no problem. And no, I don’t feel as blasé as that seems!)