Diary Day 114: How To Have A Life and CFSME – A Spoonie’s Progress

It’s been a couple of months since I last blogged and that’s because I’ve been grasping the nettle of life! 

It’s almost my 5 year anniversary of being diagnosed with CFSME. To some that’s a newbie, to me it represents 5 of the hardest years I’ve ever been through, period.

But I’m 5 years into this journey and nowadays TBH I’m interested in one thing only…

How to have a life when you have CFSME 

Or, in other words, how to improve my quality of life.

OH, are you better ???

No. By saying I want as full a life as possible it isn’t saying that I’m recovered. The two things are completely different. 🙂

So you still have CFSME then? 

Yup. Yes I do. I still have all the symptoms of ME.

I still cannot physically or mentally cope with any extension to what I know are my limits.

I still have to rest for long periods of time in order to keep my symptoms stable.

So not running any marathons then? 

No. No I’m not.

Saying that though, I do walk and sometimes I even get on the bike bought for me a year ago. I do experience post-exertional malaise afterwards but I think a day or two of flat out exhaustion is a reasonable counter to the health benefit that brings.

I try and spend time outdoors even if it’s falling asleep in the sunshine, taking the bins out or walking to the shops and back.

Having a new diagnosis of Type 2 Diabetes alongside CFSME has forced me to exercise. I have to.

I’m positive about trying to exercise, it’s important for my health and well being so I try my best to do something of that to ward off further diabetes complications and stay mentally and physically healthy.

Alone time 

I spend most of my time alone. This lessens the exhaustion I also feel when I am socialising or interacting with people.

If I had any sort of ongoing relationship with another person or people, I don’t think I’d be able to have extra time to write. The fact that I live alone and have no responsibilities towards other people within my home means that I have bought some well-as-possible-time.

Carving out well-as-possible-time. 

By doing all this, I’ve reached a  plateau in my symptoms. That plateau has bought me a bit of well-as-possible-time.

I manage this by the tried and tested Spoonie techniques called “knowing your limits” and “pacing.”

Woo hoo! 

Yes, woo hoo!!! I AM cheering!!!!

Now don’t misunderstand me – this isn’t time when I am well. This is time where I feel as well as I can.

There are sacrifices that have to happen in order to carve out that well-as-possible-time i.e. refusing to see people as it will exhaust me and not responding to requests from my family and friends to do things with them, this is quite a challenge and I hate hurting people and being alone, but I’m learning how to do this through counselling and a lot of trial and error.

I say “talk to the hand” if there’s anything that could encroach that will eat into well-as-possible-time.

Another sacrifice is that I spent most of my time at home and never go anywhere in the evenings, I use that for down time and rest.

What’s that given you? 

It’s given me about 4 hours in the day when I can write.

For me, writing is the big aim, the thing that increases my quality of life, connects me in with other people, do something creative and makes me feel productive and that my life has a purpose.

After all. I’m not dead yet. I’ve got the rest of my life to live somehow.

For you it may be something different – you might have a couple of  well-as-possible-time when you spend it with your nearest and dearest, study or work, for me it’s about having time and energy to create something and write.

Any tips about how to manage that while you have ME? 

Yes. In the old days when I worked, I used to carry around a to-do list in my head. I could multi-task and juggle many different ideas, thoughts and things at once.

I could have a conversation with someone and type at the same time. Not any more!

Tips on how to manage cognitive activity like writing when you have CFSME 

  • I have a big day per page diary. At the end of every day I write down a list of things I’ve done and a list of things I need to do next day. This helps with Brain Fog. The diary replaces my memory, which is seriously affected by CFSME.
  • I don’t force myself to stick to the to-do list for the following day. This helps me adapt to how I feel on a daily basis.
  • I give myself lots of breaks. This helps with exhaustion and re-connects with what my body and mind are telling me I need to do.
  • Flexible deadlines. Deadline schmedline. Nothing is done quickly or in a rush. So it takes longer, so be it.
  • Don’t make any promises. I tell other people I have to confirm on the day depending on how I feel, and I tell myself the same thing too.
  • Little achievements, not big ones. Completing a paragraph well is as big an achievement these days as writing a 2000 word article or essay.
  • Manage expectations. Just because I can do this, doesn’t mean that I can do a job or study where the demands and adjustments will be different.
  • Notebook. Having mental symptoms like brain fog has robbed me of the ability to have creative ideas on request. When they do come, I write them down in a notebook. That way they don’t go missing.

and the final one?

  • DO have big ideas!! Just because I’m unwell and have this darned awful illness, does not mean to say that I can’t have a life and dream of something big happening. I refuse to succumb to losing my hopes, desires and dreams. They are an engine and fuel of their own. They spur me onward, give me a purpose and help me to cope with the overall situation I’m in.

How’s that going? 

Fairly well thanks. I have a routine I stick to now and write for about 2 hours every day, but that can increase to 4 or 5 depending on how well I’m managing the rest or decrease to 1 or 0 if I’m really unwell.

But! I have something to show for my life now and that’s gold dust.


Copyright Lindy, 2016. 

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