Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Saturday, 31 December 2011

Analysis of an ME symptom diary

I never travel without my diary. One should always have something sensational to read in the train.” ― Oscar Wilde

This year's diary definitely doesn't qualify as sensational! And it was only ever meant to be a symptom diary anyway, never intended for publication, but it has been a very useful process to type it up and analyse in retrospect. It has allowed me to identify trends, like what activities cause what symptom or payback, which, in turn, is enabling me to plan what to avoid to keep symptoms bearable. 

So, boring as it is, I'm sharing my experience in case it can be of use, merely from the process itself, or something I describe that perhaps resonates.

Even reading it back myself (you'll be glad you don't have to) it's just a tedious and repetitive round of constipation followed by IBS; activity, followed by excruciating pain, lack of sleep and worsening post-exertional malaise (PEM) ... 

It sounds so easy to say avoid such boom and bust cycles and learn pacing. Quite another to achieve that in reality when, often, too much activity (that will cause unforeseen symptoms) is merely getting to the bathroom and back. It took many years and writing all this down and reading it back for the penny to fully drop for me, so I do understand why it's hard for anyone not actually experiencing it to grasp, but I do think a few more could at least try to have some empathy.

The biggest conundrum is if I wake up just tired, but only feel averagely crap. Of course, if I actually tried doing anything, that would be a different matter. 

But this is the worst time, because when you finally get it right and reduce your stressors to the required level to not provoke unbearable symptoms, 'imposter syndrome' clicks in (undoubtedly worse due to medical gaslighting), we begin to think maybe we aren't ill after all, then overdo it and go right back to the start all over again. At least going through this process means I do that less now.

Anyway, here's what I've learned from analysing my 2011 Symptom Diary:

  • My sleep pattern has it's own mind. Doctors and other health professionals bleat on about sleep hygiene like it's some universal panacea. It. Does. Not. Work. (At least not for anyone I ever communicated with who has ME.) In my case, I sleep better with some low light and some noise (TV, white noise ...) and can't stand dark and quiet - I mean, to the point that it is mentally disturbing and nightmare inducing. And sometimes even that doesn't work. The only thing I can somewhat control, is to make sure that I don't do things on days where I haven't had enough sleep and am thus wired, strung out and already knackered. Easier said than done, because, in practice, that means avoiding making any plans. And pleasurable, non-essential ones are the first to go. During 2011, I had far too many medical and counselling appointments that, in retrospect, were often of little value, but which caused massive amounts of post-exertional malaise (PEM), with severity in inverse proportion to the amount of sleep. So, I guess the take-away here is to learn to say NO. Even to doctors and especially to other 'well-meaning' people. Accept and trust your body on this.
  • Outings cause pain that prevents me sleeping as the pain in my legs often keeps me awake all night. Well, any activity causes pain and overactivation, which then causes lack of sleep, which causes the pattern to repeat. Walking any distance provokes this, yet I persevered for years because a) I had no alternative means of transport and b) under the misapprehension, based on 'expert' opinion that it would do me good. It certainly did not. All it did was keep reducing my baseline and what I could achieve, from which I have never recovered.
  • Low light may be good. Light early mornings on the other hand are dreadful. Maybe this intolerance is more pronounced for me because I spent 16 years closer to the equator, in Tenerife, where there is a lot less difference in the length of day between summer and winter, but these seasonal swings in the UK are something I cannot seem to adapt to and which increase my lack of sleep in summer, which increases my symptoms and reduces my baseline. Even more.
  • Any effort causes exhaustion symptoms such as breathlessness, shaking and feeling uncontrollably sick at the time and later post-exertional malaise (PEM) symptoms, which are flu-like with sore throat, swollen glands, feverishness, headache ... The only fluctuation is the amount of said effort that will cause this reaction cycle to start. Predicting or noticing what that point is, is the hard part, because it's a full-time job that requires attention, awareness and concentration that are, in themselves, activities that can cause exhaustion and payback. 
  • Travelling to anywhere is exhausting, but not all methods of transportation are equal. It's not necessarily logical, but walking is not always the worst - or most exhausting - means if an alternative, like the bus, would involve lots of waiting and standing around that causes worse symptoms and greater excruciating pain. Buses, I've found, are impossible anyway because of the jolting. Trains are only acceptable if a seat is guaranteed. Car journeys are intolerable if they're too long, require me sit too upright or over poor road surfaces. 
  • My system gives me no warning of IBS-like attacks, however, by analysing the diary, I can see that the majority of them tend to follow episodes of constipation. It isn't stress or exhaustion that's causing it, it's mostly medication, especially pain relief, or changes to my diet that are the worst culprits. Oh and THE WORST thing: Buscopan - prescribed by the GP for IBS. Irony at it's most surreal. Let me make the distinction here: I'm calling these 'IBS-like attacks' because there is overlap and they are like IBS. And GPs have diagnosed me with IBS twice, probably wrongly. What I think is the case is that these are gastric symptoms due to myalgic encephalomyelitis. That also means that a drug like Buscopan that is designed to stop the sort of stomach cramps that you'd get if you had, say, a stress-induced tendency to IBS, will, in someone with an already exhausted system - and this is my experience with it - simply cause the bowel to become virtually paralysed and unable to function. Then it 'backs up' causes constipation, even more headaches, nausea, until it 'explodes' again. The only things I can do to avoid this boom and bust cycle is to absolutely never take pain relief, not even a Paracetamol, certainly never take Buscopan, completely avoid binding foods like eggs and never, never, never deviate from my roughage-heavy diet.
  • Of course, 'absolutely never taking pain relief', means the only method I have left for avoiding pain is to avoid all those activities or environments that would provoke or increase pain. 
  • Ah 2011 was also the year I learned that I cannot tolerate a dental anaesthetic, which contained adrenaline. The hard way. Since then I have insisted a warning goes on the top of my notes. If a new dentist does not want to understand this, I leave and change dentist. And I carry a medical alert card that explains the intolerance too.
  • A HUGE reason for keeping the diary in 2011 was because of the abuse and bullying I was receiving from my mother and certain people she had manipulated into continuing this for her. Being threatened, attacked and slandered by them were among the reasons I had sought support from counselling services, because I had been pushed to the point of breakdown. She died in 2011, which, for me, began a process of recovery, from that at least. Every cloud, as they say.

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