CHAOSTOCOSMOS

Saturday, 30 April 2011

Using 140 characters to chart my symptoms

140-characters.svg-300x239The number 140 seems to have taken on a life of it’s own since becoming the de facto limit imposed by Twitter. For many of us with chronic illnesses, this 140 character limit is also the limit of the physical or mental effort we are able to manage at any one time.

Over the last few months, I’ve also been using the 140 character limit to log my symptoms and how I feel on any given day. Whilst I don’t often feel up to writing much, most days I can, just, manage that short, sharp notation. With practice I’ve learned how to hone it so it retains enough meaning that I can understand and expand upon it later.

Of course I could have done this with Twitter, but what I really wanted was a means to collect a log of these notes. If I used my regular twitter account I’d not only bore my followers to death with daily winging, it would take some setting up – that once I could have managed easily, but has become now too much of a fiddle - to ensure that only the relevant tweets were archived somewhere.

So instead, I’ve been collecting these notations with the InstantMe facility at PatientsLikeMe. Sometimes, when I really do want to share my symptoms (or just have a good whine), I’ll paste that 140 character summary into Hellotxt, which, in turn, is set to update my Facebook status and Twitter.

As this and many other things I maintain online have been automated, I can maintain my presence in various places, without any additional effort.

As I say, I expand upon the 140 characters in order to keep a proper record of the symptoms I’ve had each day. This is essential for many reasons; so I know which issues I need to bring up with my GP on the next visit; so that I can track what events, foods, medicines, etc., cause or worsen (or improve) any given symptom, side-effect or set of them. It’s also because I’ve been TOLD to keep exactly such symptom diary by various people involved in my medical care.

It matters not whether we keep these online or on paper, so I absolutely reject the idea that If you can tweet you can work, because there’s a world of difference between being able to half-coherently mumble a short note whilst reclining in bed in the clothes you’ve had on and unwashed for the last 6 days and, getting up, getting showered, getting dressed – yeah, you take these things for granted, when you’re ill they take all the energy you had – then getting to a non-existent job on public transport that doesn’t run, let alone working!

One idiot once told me that if I can blog I can do a job too.

Similarly, the odd post, written in crappy English, sometimes done in small instalments over days – most of which are to do with my illness or ways of trying to deal with it – does not mean I can do something well enough or often enough to be paid, even if you took out the preparation and travel.

Anyway, having kept the 140 character notes online, it probably would have made sense to post the expanded versions online too, to this blog perhaps, but I haven’t done so, but instead I’ve been writing them in a fat A5 diary, only because I was given one that I wasn’t going to use for any other reason.

ATOS are perfectly welcome to come round and read that, because, no doubt, there’s some Nazi out there who thinks that if I can scrawl stuff about having a headache so bad I couldn’t see or sit up, usually several days after the event, or noting when I have IBS attacks or am constipated again, I could work.

This is also evidence to show the extent of my disabilities, from noting how often I’m able (or not) to go out and the effects I feel when I do, as I noted the other day with the cruel irony that my pain meds weren’t working on Thursday, as a result of going out to the doctor on Wednesday to get pain meds.

Through this system, I’m better organised, even if I’m still not able to do anything, but at least I have tracked and identified many reasons why.

This gives me confidence, because I now know and can show that I don’t work because I can’t work and that I lie down because otherwise I will collapse and, that these are not odd, one-off symptoms, but clearly repetitive patterns.

(PS: In the “you might also like” department is 2 Easy Ways To Create An Impressive Timeline For Free, as it occurred to me that in our on-going quest to understand our often overlapping and confusing symptom sets and illnesses, it might be an idea to plot the timeline of what we suffered and when.)

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