Sunday, 22 December 2013

"How did it ever come to this?"

The title is a line from a Take That song I was listening to yesterday. It rather resonates with me at the moment.

I had an absolutely horrific day yesterday. I was in bed in agony all morning and feeling too ill to sit up, eventually decided to go downstairs to see my grandparents who were visiting at 4:30pm because I was lonely and they'd already been here a while and I felt like I ought to say hello to everyone, but then I curled up on a beanbag and rested with my eyes closed anyway, so I still wasn't really 'there'. By 8:50pm I was in tears because I felt so ill and was in so much pain so retreated back to bed.

Not exactly a successful or enjoyable day!

In Take That's words: How did it come to this?
How did I end up severely affected?

I've always read about cases of severe ME in absolute horror. Now that's pretty much me. I'm the girl lying in bed most of the time, lying on the sofa most of the rest of the time, rarely able to get up before midday, only sometimes able to leave the house (and even then it's on a mobility scooter), in unmanageable amounts of pain, on a ridiculous amount of medication. Some elements of this have only been true for me for a relatively short time so far, and *hopefully* I will be lucky enough to get back to my previous level of functioning quite quickly. It's truly awful to think that this is some people's reality for literally decades.

I really am struggling/did struggle to cope with the severity of illness I experienced yesterday even just for a day, although that's partly because I've had weeks now of being really, really unwell and it wears you down. But just the actual severity of the pain and the constant ill feeling are absolutely overwhelming.

This relapse started in earnest just over 5 weeks ago, although I'd already been really struggling to cope for a week before that. Since then I've only had a week and a half of relative respite, during which I even managed to attend Uni part-time. I was having to use my mobility scooter even to get relatively small distances inside due to mobility difficulties, was needing a lot of rest and was having difficulty managing my pain at times but was feeling comparatively ok, although admittedly rough and going downhill. But other than then it's been horrendous.

I never dreamt I'd end up in this state, even as things slowly (or sometimes quickly) progressed. I assumed I would improve before my next relapse, would have got some weight on and my mobility would have improved to some extent. Then it would have been less drastic and less terrifying. I would've had somewhere familiar to drop down to.

It wasn't to be. This is something else.

I just never thought it would be like this. In the back of my mind I knew it was a possibility because I've obviously read about people with severe ME in the state I'm in now, and- worryingly- worse. There's no real treatment for ME, doctors can't really give us hope, and often struggle to even make us comfortable. They're more reticent to pump us full of symptom-relieving drugs than they would be with, for example, a cancer patient, because there's less understanding about what's going on and ME/CFS patients are also quite sensitive to a lot of drugs, so there has to be a degree of caution. I am lucky to have a number of medications that do help, but only to a degree, and I have doctors who are willing to try things with me and play around with dosages. None of my doctors can prevent me suffering when things get this bad though unfortunately (particularly as I am away from my regular doctors at the moment and wouldn't be able to leave the house to access treatment most days at the moment anyway..).

Fingers crossed I get to sleep soon and today is a much, much better day!! My heart goes out to those that have been severely and very severely affected by ME long-term; respect and gentle hugs are being sent in your direction!

1 comment:

  1. So sorry you are feeling so bad and I can offer no more wisdom than it is par for the course; CFS, ME and Fibro are such horrendous illnesses that do get not benefit from research as then the pharma companies wouldn't be making so much money from the 'undiagnosable' chronic syndromes and illnesses. All I can say is however terrible the last day was, you made it through it and you will continue to make it through the good and bad days. You have an inner strength that you only recognise after the fact. When things are really bad meditation and breathing are the key, bring yourself into your body and recognise and identify each pain with breaths, it sort of applies a logic or rationale to the pain and makes it less overwhelming. Yes you are in pain, yes it is bad, but it is a sensation, a brain signal, by focusing on it you can make it less and knowing you have gone through such a bad day you can do it again. Take to your bed, cry, rest, don't feel pressure to be social esp over the holiday season, remove any guilt that might linger. I recent learned a technique I have found very helpful on days like that, it sounds a bit mad but it works; it involves counting forwards and backwards between 1 and 57, but is not a math problem, the point of it is NOT to get it right as when you go wrong it means it's working....It works by messing with the established brain patterns than can occur when we feel pain, anxiety, racing mind. Here goes:
    Sit, lie or stand comfortably and focus on your breathing... In and Out
    When you have a regular pattern on your IN breath count 1 - OUT breath count 57
    IN breath 2 - OUT breath 56
    IN breath 3 - OUT breath 55
    IN 4 - OUT 54 and so on....
    If you forget where you are or go forwards instead of backwards simply start again
    Don't try to count just add the numbers to each breath
    Stay strong and know you're not alone, a lot of us know and have felt exactly as you do now, take each minute as it comes and know that each bad time is passing by every second. Pacing and focusing on the now, are the only proven management techniques of illnesses, meds only treat individual symptoms the rest is up to us. Remember this too shall pass. Siobhán

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