Tory Majority Day 53: Rest, Cancer, Being A Spoonie, Pathographical Writing, Real Life Situations and MECFS

I went to and fro about what to write about yesterday, partly because I don’t write about everything in this diary. It’s public and anyone can read it and so there is judicious editing about what goes onto this screen.

The judicious editing happens partly because for anyone with ME, taking on board the act of reading about someone else’s life is quite a big deal. I’m conscious of keeping posts as short as possible, as easy to read as possible and not to write it like a long stream of consciousness. Hopefully they are OK for someone with ME, or someone without ME, to read (?).

As I’m writing that, I’m thinking: “Um. How do you start to explain that reasoning to someone who doesn’t have this illness or understand it?”

I think about my friend with ME, CB, and some of the conversations we’ve had about that exact thing. Then I think about being a Spoonie too.

Spoonie is a term that people with illnesses use to describe having limits to what they can mentally or physically do in one day – a bit like having a list and when you’ve ticked things off it, you can’t add anything more onto it or you’ll get much more unwell.

Talking about big stuff in my life might make a reader not able to tick off the list of what they need to do in theirs.

No. I still don’t understand why ME would make you incapable in that way, but it does. It’s something that us in the community know, experience and talk about but I find it often gets lost in talking about all the other symptoms that are more immediately apparent.

Is it a cognitive symptom? I’m not sure. Is it because our energy problems extend to our emotions too? Well yeah, but why I equally have no idea about why

It does though. It affects our ability to take on other people’s emotions too. 

And the only way you can deal with it, is to limit your exposure to emotions that will drain you.

I’ve also been reading about a movement in writing circles called Pathographical writing. That means people writing about their ill health. I guess this blog is pure Pathography, or at least a mix of diary and Pathography. Sometimes I talk about my illness, sometimes I don’t.

I try to talk about MECFS in most posts, because I have ME and I want to explain to readers how it affects me because it’s a poorly understood disability with a lot of myths and misunderstanding out there.

Like any illness, there are periods of time where I don’t consciously think: “This is my illness, I am ill, I am doing this because I’m ill, I’m not doing this because I’m ill.” Although that voice is there, it quietens and disappears, goes away and comes back again.

A bit like cancer can.

Yesterday I decided I would write about how cancer is nibbling around the edges of my life again for the 5th time in 10 years. I took ages to make that decision because of everything I’ve said already in this post.

But I decided that I wanted to talk about my experience of cancer because it is such a specific illness to cope with. There might be people with ME out there who identify with what I’ve said or are wondering how to cope with it in their lives too.

There’s a lot of fear and a lot of panic. It’s one of those diagnosies that hits people like a thunderbolt. Rightly so??

Well people do survive cancer. They do. In my life I have lost people to it, but there are people all over the world who are given the diagnosis and survive. I’ve been reading some blogs this week written by survivors of cancer which are both Pathographical and extremely soothing and useful and informative to read.

Also something like another person’s illness is a real-life situation. I may have to live my life in a bubble, in a highly artificial universe created by the way MECFS affects me and what I need to do to survive, but real life still happens. It doesn’t stop simply because you are unwell.

How do you cope with real-life when you are unwell?

It’s not the same as when you are well. Period.

Having ME changes your bodily and mental reactions. When you first become ill, those changes makes you a stranger to yourself. Then there are the massive limitations of having this illness as well.

You can’t do the things you used to do, to cope with stress. You can’t go for a run, go down the gym, go on a long holiday, get pissed or punch the wall.

But there are other things that I can still do that helps when times are hard.

Trial and error have taught me what I need to do

Here’s my spoonie list of coping with stressful situations: 

Top tip: Accept quickly that there is something stressful going on around you: you need to take care of your health differently that when there isn’t any stress going on in your life. Having ME will make stress feel different from anyone else’s situation. Ignore them or how you used to cope, you need to do what’s good for you NOW!

  • increase your rest breaks: make them little and often and guard them like a lion
  • protect your night time sleep at all costs: take medication to help you sleep if you need it
  • find things to do that you enjoy: this might be as simple as emailing a friend but it really helps
  • you can’t be thinking about the stressful situation 24/7: do something else at least some of the time
  • pace: pacing stressful situations means approaching them in chunks rather than as a whole
  • when the stress builds like a wave, stop doing other things that adds to a sensation of pressure
  • tell other people you are stressed: spread the load
  • tell other people what you need them to do if it’s different than normal, get help
  • give yourself mental space: it’s OK to think about other things or use meditation or rest to quiet your mind while it is going on. It’s essential to find a calm space to cope.

The stress will pass, eventually: it will, it really, really will. It will resolve itself somehow and sometime. As horrible as it feels while it is happening, what’s important is how you cope with it so that when it’s all over, you have remained as well as possible, as well as you can be.  

Repeat, go back to the top of the Spoonie stress-busting list as many times as you need to.

Finally, remain positive, have fun moments, do things you enjoy, connect with people you like and love. All of this will help you in not getting completely sucked up into the stress tornado.

© Lindy 2015

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