A miserable case of ME/CFS – two years on

As I wrote a year ago in my previous CFS update, I did find a step improvement in my quality of life when I started taking the Myhill regime of supplements: the tangible aspects were really getting rid of cramps; improvements in mental clarity / ability to maintain concentration for extended periods albeit in bed; a modest step in energy levels and in my recovery times after any exertion.  However being honest this was a step improvement which then plateaued and six months later, in June, my wife and I couldn’t see any real evidence of any improving trend in my overall energy budgets and mobility.  Stuck again.

Wheat turned out to be a problem

So Jan and I wondered if we could try anything else that might help my condition.  I guess we started to clutch at straws.  One thing that we decided to check was gluten intolerance.  When I first had ME twenty years ago, I became wheat intolerant though this intolerance went away after a few years.  I always assumed that this wasn’t a classic gluten / Coeliac reaction given the transience of this intolerance.  Also I hadn’t noticed the same symptoms of intolerance with this illness that I had twenty years ago.  Even so, we decided that I should try a gluten-free diet.  Lo and behold, within a week or so I began to observe a significant increase in my general energy levels and stamina.  I hadn’t consciously noticed it (possibly because the change had been gradual), but my food had been previously passing through me in a typical 3-4 hours and I was scoring 6-7 on the Bristol Stool Scale (BSS) (read the article for an explanation!)  With the gluten-free diet, food was taking more like 12-24 hours to pass through my system and I was scoring a more normal BSS of 2-3.  When I told my GP about this, she did do an allergy test to confirm this.

A month later, I was able to sit semi-reclined for extended periods for the first time since the onset of my illness, and regular visitors immediately noticed this improvement. I also decided to set up a day bed in our living room, so that I could be nearer my family and have easier access to the kitchen and garden, etc..  This also had the benefit that if I did run out of energy, then I didn’t have to negotiate the stairs to get to my bed.  Before this when I was based in the bedroom, a couple of times when I was downstairs, I just didn’t have enough energy to get back up the stairs again and on one clearly-remembered incident, it took me 10 minutes to crawl step-by-step to our first floor landing with Jan pushing from below, and that knocked me out for the next day!  Hence I understandably became reluctant to venture downstairs if I felt the slightest tired.

Oddly enough one interesting side-effect or possibly co-incidence was that I soon found taking the magnesium injections was very uncomfortable and left the injection site sensitive for days, so I stopped taking them and switched back to Epsom salt baths.

So giving up wheat and moving downstairs helped my realise the next step improvement in stamina and quality of life, the next step to recovery.

Overcoming long-term bedrest

Even though my digestion seemed to be working better, I now faced a different problem: chronic muscle wastage as a result of spending virtually all of the last eighteen months flat-out in bed!  My legs were like matchsticks compared to their previous shape; my back and shoulder muscles were unable to support me and especially my head upright and so on.  Consider this: I didn’t have the strength to sit with my head unsupported for more than about an hour at most.  The only cure for this is appropriate exercise, what the professionals call Pacing : slowly building up and accepting that exertion can bring back temporary symptoms of mental confusion, etc., if you push too hard.  This was and is a long hard slog after such a length of bedrest, but it had to be done.

I started walking every day, even though it was a bit farcical at first: my walking range was about half a mile.  Jan offered to accompany me but found that her slowest walking pace was a lot faster than my fasted. I joked that my main worry was being overtaken by an old-age pensioner using a Zimmer frame!  Nonetheless I made fairly steady progress over the next few month getting my walking range up to a mile or so, and being able to do garden work, albeit in 30 minute chunks with a good rest in between – a far cry from the days when I didn’t even have the stamina to get to the bottom on garden and back.

Leaving EDS / HP and my first holiday

In September, I began discussions with my immediate manager in HP about terminating my employment contract on grounds of ill-health.  Whilst my health was improving, trying to extrapolate to the point where I would be able to resume a full-time role as a divisional CTO in HP was impossible.  I was uncomfortable with the idea of entering a third year in long-term sickness, so we negotiated amicable termination terms and I left HP in October.  It was a sad day for me leaving after 32 years with EDS.  However, it also meant that I stopped worrying about my return to work and focused entirely on getting better.

I also decided to try a holiday on our holiday cottage on Alonnisos, one of the Greek islands in the Aegean, which we did in early October.  We almost cancelled a few weeks before because on one my walks I ran out of energy after just 800 yards and had to get Janet to get the car to take me home – so it wasn’t a case of continuous improvement: I still did have bad days.  The holiday proved a great success in the end.  There’s something about the water / air / food / sunshine / whatever on the island which just makes me feel so much better. It was a bit strange to see the place after a two year absence.

XMRV and all that

Also in September, a potentially ground-breaking paper was published in Science showing a strong association between the retrovirus XMRV and CFS.  The authors were research teams from the Whittemore Peterson Institute (a privately funded research institute set up to look into potential biological causes of CFS), the NCI and the Cleveland Clinic (the team that discovered XMRV).  The paper shows association rather than a causal link, and it is still to be subject to independent verification.  Even so, I am sure that this paper is going to attract a lot of attention and help focus research investment into potential biological causes of CFS.  As a result of this, I have renewed my somewhat intermittent interest in taking an active part in Wikipedia as an editor.

And onto another plateau

After the high-point of the holiday in Alonnisos, if anything I have gone backwards this last few months and my energy levels have deteriorated.  I had hoped to continue this improvement, but this illness is a case of two steps forward and one step (sometimes two steps) back.  This can be a bit depressing, so it’s sometimes hard to maintain a positive attitude.  I have to be very careful to watch for the early-warning signs of fatigue coming on.  They are very subtle at first, and by the time they become obvious I have gone too far.

On a positive note, I am a lot better than I was a year ago.  I am a lot more mobile, albeit still largely housebound.  On a negative note the last two month have been a case of regression. Let’s hope that this slide doesn’t continue.

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