Musings on somehow being 25 and chronically ill :-(

You wouldn’t necessarily know I was sick.

I can go out for dinner, walk short distances, hold conversations without yawning too much.

But – things aren’t right.

MadFather and MindReader tell me to stop measuring my health by having not been to work for months. And they’re right, in a way. What has happened is that I have had many, many more bad days than I did last year, but that those bad days are almost as good as my good days. To me, there is a significant difference because I feel shit, but on a bad day I still go out to dinner and do the hoovering. That was unprecedented a year ago.

I am not sure what happened to me last summer but it seems getting over whatever that was almost presents more of an obstacle than the glandular fever itself. It’s changed a lot of things. While the illness is milder, it seems to be much more up and down and about doing things but feeling ill, not doing nothing. It also seems to mean when I get a virus I will get better and then relapse and do this several times before actually getting better. I worry I will develop new symptoms from every virus and end up bedridden again.

I know too much about M.E though, because some people have bad periods, get better, relapse, and so on, and after a few times they stop recovering from the relapses. I can’t help but think what if that has happened to me now? I have been relapsing and remitting since the end of March. That is the longest it’s ever gone on. What if it actually doesn’t end?

I know this sounds dramatic, but I feel like I am tied to a train track, waiting for a slow oncoming train. I know what might be coming. I know my health is in many ways getting worse and not better. And yet I can’t do anything to stop it. I never knew how people lived with chronic illnesses or the worry that a cancer could return and yet I seem to be doing it.

Recovery presents itself in the absence of symptoms and this is why it is so easy to get downhearted and misjudge this illness. Sometimes I will recall symptoms from a long time ago – like my feet stinging in the mornings when I stepped out of bed, or crushing headaches, or the fainting, the nausea, the nosebleeds – and realise that I no longer have those. Most promising of all is that I can have 9 hours’ sleep now and not always be shattered. Considering, this time last year, needing 10 hours’ sleep was all that was wrong with me (and caused me no end of frustrations), this is progress. But it’s progression within regression and it leaves me very confused.

I am definitely better than I was a month ago. But I have felt ‘better’ three or four times during the past few months and each time it’s gone wrong again.

I feel better for having written about it, anyway.

4 thoughts on “Musings on somehow being 25 and chronically ill :-(

  1. Thanks for sharing how you are feeling, Billy Gean. It’s so easy to give advice, I know, but I have to stick to the easy stuff these days, so here is mine. Try to stop worrying and analysing what’s happening and focusing on issues of recovery versus relapse. I don’t actually use the terms remission and relapse myself. I prefer to speak of good phases and bad phases. I don’t talk about good days and bad days because it can vary within the day, e.g I can wake feeling like I’ve climbed Everest during the night or been hit by several trucks, but then pick up within a few hours, then go down again later in the day. With me, as with many others, it really can fluctuate throughout the day. So, I prefer to think in broader terms and I feel as though my perception of time has changed, as though I don’t live by the standard 24 hour day, 7 day week, etc. I have my own personal moon phases! So, the good phase / bad phase concept suits me and doesn’t tie me down to any deadlines! Some of my symptoms were more acute in the early stages, some came on more insidiously over the years and I didn’t even realise they were part of the symptom profile of M.E/CFS. I get bad pain phases and then pain-free phases and so on with the different effecst of ME/CFS. I’ve never been severely affected but have been through two phases of being virtually bed-ridden for a few months each time, but have emerged from those phases, it’s not necessarily a downward spiral and you won’t do your body any favours by worrying about what may or may not happen in the future … but you know that. Just take each day as it comes and always be mindful of giving your body the nourishment and care that it needs to support its healing and coping with the various effects of ME/CFS. Go easy on yourself and learn to be your own best friend. Take care. Good luck!

  2. I can really relate to your situation Billy Jean. The bit I find tricky about my CFS, is the brain fog.
    I’ve become thourghly confused by it at times.
    But the last bit of Jo Best comment sums up brilliantly any advice I could give.

  3. 1. Attitude counts for a lot, I believe. You gotta keep looking up because the good endorphins help your body cope and kick ass. :) (as tough as that is to do)

    2. I have to imagine that it’s horrifically hard to avoid feeling gunshy all the time and overanalyzing every little “blip” in your health. I mean, I’m relatively healthy and even I have random pains or aches or whatever, but I don’t think, “OMG, I’m getting sick!” until they happen a lot in a row. I imagine for you, every twinge prompts you to think, “Oh NO!” That has to be really, really tough to deal with day-in,day-out.

    3. In so many ways, I wish I had known you before all this health crap because you’re so pretty and smart and capable and funny and amusing NOW — completely healthy you must be practically on fire, eh? :)

  4. I get this.
    I get the frustration, the annoyance, and the sheer dullness of being sick – when all you want is the tedium of having to haul your bum out of bed and do a nine to five every week.

    I have Epilepsy since I was 14, have had M.E., and also have new persistent daily headaches as well – which is basically a migraine that stay with you without a break for oh… about 19 months … it ends when they stick a needle up the nerves in your brain.

    However – don’t push yourself with M.E.
    You WILL get there (as annoying & preachy as it may sound) and in the meantime your body is telling you what you need.
    I am fairly simple at the best of times – but I do know that we have to listen to our bodies – be it ‘don’t have another drink or you will puke’ or ‘lie down and sleep – you need it’. It always seems to be right.

    Just take care, and please – avoid the piss.
    (at least you didn’t trip over someone’s prosthetic leg on the train …. horrors)

    MrsE

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