Sunday, 20 February 2011

The endless catch 22 of long term illness

1)If I am cheerful I must be well.
If I am cheerful I am coping with my illness. It doesn't mean that I am suddenly cured, or that I am experiencing no symptoms. I am a cheerful person by choice because I believe fully that my circumstances are not what shapes me. My reaction to my circumstances is what I control at all times.

2)If I am able to do things for myself I must be well.
If I am able to do things for myself it is because I have worked out how to get around my challenges to keep going as best I can. If I am seen doing something on a better day, that doesn't mean I can suddenly do it all the time.

3)If I look miserable I must be depressed.
on a worse day I get monosylabic, I find it difficult to smile from muscle pain. My face freezes in a half frown from muscle twitches, so I must be depressed. CBT is the only answer to that, and it will 'cure' me. We all know that this is not true. I'm still well able to crack a deadpan joke, or laugh even if I can't smile, I'm still not depressed because I won't allow myself to become depressed.

4) If I'm loosing/gaining weight I must be over/undereating.
I get severe nausea sometimes as a result of the dizziness and feeling like I'm on a rollercoaster and the whirlitzer and a ship in high seas all at the same time. Sometimes I can manage to eat, other times I can't. Sometimes I can cook, other times I can't. Sometimes there is 'grab food' available to me, left by kind souls who understand. At other times I don't even have the ability to microwave something for myself. Today I might be able to grip a foil tear back to open a packet, tomorrow I might not. Today I may forget to eat, tomorrow a friend may come by and make us both something.

5) If I can sit at a computer I must be well.
Sometimes all I can do is sit at a computer, wrapped in a blanket in my reclining chair. I actually lost part of my care package over this one. If I had been sat in front of a telly wrapped in a blanket the carer wouldn't have reported that I was able to do things and refused, but because I was sat in front of a computer I must be fit. I couldn't have focused on the tv screen to save my life. The computer and simple games helped me focus out of the spinnny dizzy nauseous hell and let me recover enough to be functional.

6) If I can write a blog I must be well enough to work.
Oh this is a big one, a real slap. I have been fit enough to write for the last two or three days, but I've not been fit enough to make myself something to eat for, what, eight days now. I'm recovering from a sinus infection so my levels of dizziness, percieved motion, nausea, ability to place self in space and general pain and tiredness is off the scale. Coupled with the fact that I've rarely been able to eat this last week so I've not been able to take the 'after food' pain killers. pain levels are at level ouch. Tramadol is a life saver for the pain, but I wouldn't have been able to drive or operate machinery. If I went out anywhere just now exhaustion elephants would land on me from a great height.

7)If I look better I must be fit to go do stuff.
Lets go out somewhere, you look ok Mad, you must be feeling up to it. Sorry no, having a 3 elephants day, no spoons for anything else. What do you mean, '3 elephants?' Imagine that whatever you're doing you have from one to ten large pink elephants standing on a platform on your back, giggle about this; it is supposed to be funny. These are 'exhaustion elephants' and they make everything tougher to manage. If you do too much, more of them will jump on, if you do too little the ones you have sitting won't go away so you have to balance how much you do. If I say I can't manage, seriously, I can't manage.


  1. I like your site. Reminds me in alot of ways of myself, tho I dont have ME I have MS.

    If you changed tghe setting for replies to allow anon you might get more people posting replies.

    I am scared stiff of my future now with this Govt to be honest, and I don't have the energy to fight for myself, and they don't have the care to care for people like me. Cos I am just a nobody.

  2. Thank you. My Mother's husband has MS so I'm very familiar with the similarities. I'm convinced there's a link between the illnesses that will appear from research one day. Auto-immune dysfunction that reacts differently based on genetically pre-determined susceptability is my best guess based on current research; but what do we know? We're just patients.

    On balance I decided not to allow anonymous posting because I'm not well enough to cope with the stress of dealing with hate, trolling and flames. I know there's a supportive percentage who can't post here as a result, but that's just the way it has to be. My health is more important to be blunt.

    This is probably my last stand; I have scraped up the anger for one last fight on behalf of all of us in this stupid pointless situation. Don't give up yet, we're starting to make a difference collectively.

  3. my mum also has MS so i know the lie of the land i guess. tho mine is so different to hers, this fatigue is what is the worst to me right now, it never goes

    Having to change all you do to even do something easy like open a tin is a continual learning curve, losing the use of body parts, losing your future dreams and the future you thought you would have have had i feel like i grieve for each little bit.

    I do feel like I am hated by the govt for daring to get ill. But i did not know it would happen and i did nothing to make it happen and i wish so much it had not happened to me I dont think the Govt have thought who in their right mind wouold employ somebody who has to rest so many times a day - They would be better off making unfixable people pensioned off - then they would be able to say they had less people on certain benefits, as all we are is a number to be crunched

  4. I can relate to all of this...hugs...sorry I smell I really want to be clean but it is just not possible at the moment and who knows when I will be able to bathe myself...I did do a good flannel job on Saturday night...and thank god for humour, no matter how dark it becomes...not that many understand the real depths of it sometimes but hey ho I prefer to be cheerful, no matter what...

  5. Thank god for humour and baby wipes. Like Bluebell the rabbit I roll a joke along the ground and then follow it. baby wipes are my saviour when it comes to staying reasonably clean and unsmelly. They're so much easier to use than flannels and I can have a 'wash' without getting out of bed.