Diary Day 94: Refocussing From MECFS Via Spoon Theory, Improving Quality Of Life.

Happy New Year readers!

A bit late, I know, but recently I’ve been attempting something. I’ve been using Spoon Theory to try to give myself a bit more of something kind of special – a better quality of life (QOL).

Before I carry on, aside for some life and health related basics measured for all, my QOL is going to be different from your QOL. Aside from the basics, some things are important for me to retain a QOL whearas you will have different ones.

What’s Quality Of Life?

Healthcare sets up what QOL is and ME research adds to it, saying that for people with ME, ours is worse than 20 other conditions the Danish ME/CFS Association compared it to, for instance.

But we knew that already, right?

5 Years since being diagnosed with CFSME

I’m now 5 years since having the flu that gave me ME and my attitude has altered along this journey. I’m no longer anticipating or expecting that eureka moment when I wake up one day and feel that I’m on the road to full recovery, like I spent the first 3 years doing.

I mean, if it was going to happen, it would have happened by now.

So, as one Clinical Psychologist once mumbled under her breath, so I had to strain to hear it, in a 1-1 at the ME Clinic I attended:

“You’ve got to work out what’s important to you and focus on that.”

Before I can work out what those things are, though, I have to factor in taking responsibility for my own symptoms and make a change. Those things are:

SLEEP COUNTS – Protecting my sleep at all costs – god bless Mirtazapine. That drug has changed my life, seriously, before Mirtazapine, my symptoms were out of control. With it, I have control back.***1

THE DAYS OF MULTI TASKING ARE OVER – Not rushing through life trying to multi-task things any more. that’s dangerous. I do one thing at a time and in sequence.

I AM IN CONTROL OF MY LIFE – Reflecting on my symptoms to adjust what I’m planning on doing to prevent payback and crashes as much as possible.

I CANNOT CONTROL OTHER PEOPLE, UNLESS IT’S ABOUT MY ME – I have given up beating myself up about things I cannot do or have no control over. Other people are other people, you can’t influence what they think, say or do unless it’s about my MECFS in which case I have to SPEAK UP and TELL THEM no matter how hard or difficult it is on both sides!!

DIET MATTERS – when I started to tackle my diet having been told I had a pre-diabetes diagnosis, it became clear that diet affected my ME symptoms too. To be clear, I don’t have diabetes so the affects of food has been a compete eye-opener. I saw an NHS dietician who really helped make the changes.

I now follow a diet that is mainly plant-based, with fish and poultry as the meat, I eat little and often and I avoid sugars and bad carbs if at all possible. ***2

Snacking on raw carrots, broccoli or cucumber seems to stop the slide into sleepiness that I get when I eat bread or toast or take aways or bigger meals or anything that is loaded with sugar or salt, rice or pasta.

I protect this diet like a lioness. No! I do not want pizza, I want to do other things with my mind and body today than sliding into a day of sleep thank you and it’s down to me to put into my body what will make that happen.

REST IS ESSENTIAL – rest a lot. Rest many, many times in a day. I’m going to rest after I write this post. Yes, I know, there are a million other life things to do, people to talk to, some of you might even be working, but I’ve learned the hard way that for me, rest has to happen in order to have any hope of staying on top of all the “things else.”

TACKLE PROBLEMS HEAD ON – problems don’t go away, they have a nasty habit of sneaking up and disrupting my life when I’ve done that. If I have a problem, I try to tackle it head on now and persevering at solving it in small chunks daily is what works.

If it’s practical, like moving home, I won’t have a life while it’s happening, but I do it to make sure I do have a life afterwards.

COUNSELLING – For me having 1 hour a week to sift through and dump all the mental and emotional crap is essential to keeping well and keep the ship I’m on steering in the right direction.

Not a lot of spoons left after keeping well 

After that list of things I have to do in order to remain as well as I can do, there’s only space and energy for a few more things to add into the list because doing all those things takes up energy too.

That’s spoon theory in action right there. I run out of spoons keeping as well as possible. What’s left then?

I want to focus on writing 

Towards the end of my previous career I knew I wanted to write – I always have written throughout my life and with all the changes the internet age brought, I was swept along with them excitedly. Then ME came along and interrupted my plans, my everything.

If I do all-of-the-above I have some energy spare to write. Not only write this blog, but write-write.

Write a book, write a play, write a short story.

What’s the catch?

The catch is that it’s like having a finite tank of petrol which fuels my writing daily. If I write a blog post here, I run out almost all of that tank and can’t focus on finishing the other writing I’m on the path to writing. Brain fog doesn’t help either because it increases with time and being awake, not decreases.

So, folks, from now onwards I’m going to blog less regularly and only when I’ve got the other writing done.

The power of intention

The power of intention shouldn’t be underestimated. I’ve told people I’m writing now and with that, comes expectations from their side and mine.

What it means is that when I think: “I’ll watch TV for the next hour,” the promise I’ve made is enough to make me reconsider. I don’t want to let them or myself down so over the last couple of weeks I’ve been changing the way I do things, spoonie-style.

And it feels really good, really it does. It feels like I have regained some quality of life now and my future holds something tangeable and important to me, whereas before it was replaced by illness, fatigue and the constant struggle of waiting…..

© Lindy 2016

***1 I was prescribed Mirtazapine by my GP after a series of attempts with other medication to deal with the poor sleep, including insomnia, that I experience since I’ve been ill. It was a short-term fix for insomnia that literally turned my life around. With it, I have regained some functioning.

***2 The fear of letting my body slide into diabetes due to having ME and the inactivity that results from it was enough to agree to see a dietician to stop it happening.

Type 2 diabetes is possible to reverse as it is to do with weight, health and diet. I was referred by my GP. The dietician was extremely important and the dietary changes that I’ve made also impact on my ME.

After all, PwME often have profound reactions to medication, why not food also? I eat raw veggies as much as possible as snacks and loads of fruit too and yes, I feel much better for doing so. Not recovered, better.

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