Showing posts with label cfs. Show all posts
Showing posts with label cfs. Show all posts

Wednesday, 16 May 2018

Graded Exercise Therapy

Graded Exercise Therapy (GET) was also the first CFS strategy I tried after my first really bad period of my illness where I’d been hospitalised for a while but hadn't yet been diagnosed.  I found out about it on the internet, read the manuals and tried it out on myself.

The basic theory of GET is pretty straightforward - you work out how much activity you can do in a day without making your health worse, then add 10-20% to that each week or two so that you gradually do more and more.  So if you can walk 10 minutes a day, every day, you do that for a week or two; then you walk 12 minutes a day, every day - the next week.  And so on, as far as you need.

It’s supposed to avoid the major ‘ups and downs’ of CFS - where you wake up feeling a bit better than usual, go for a walk and then spend the next few days in painful misery in bed.  That used to really confuse me when I first got ill. I’d always be thinking “but I felt better yesterday! I thought I was finally recovering, but now I’m worse than ever!!’.  GET was useful in understanding that I was worse the next days BECAUSE of the extra I’d done on that better day.

For me personally, it did help me to get some stability back and gave a bit of a sense of control over my health which all helped my sanity.  However, it definitely didn't magically transform me into a fully-functioning health bomb either!!

For me personally, GET helped me to:

  • Understand why I got awful days after good days.
  • Even out days to more of an 'average' level rather than (relative) peaks and massive troughs.
  • Gradually build up my confidence in doing a bit more activity.
  • Build up how much I could do so I could walk more and do more.

Bad things about GET for me personally:

  • It certainly didn't 'cure me' - I had a ton of brain fog from pushing myself walking everyday.
  • It worked quite well in my first period of recovery, then seemed to work less and less well after each relapse and became harder and harder to do.
  • My days varied in how good and bad they were despite keeping physical activity the same.
I think those are the main things! So in a nutshell I think for me, GET helped me to understand better how my activity levels influenced my symptoms, but there was a lot else going on with my health that it didn't resolve, it made the brain fog worse (from physical exhaustion I think) and didn't resolve the relapses.  

Nowadays, I don't believe that a single approach can resolve this illness, I think a much more holistic approach is needed, but there are things I learned from doing GET that I carry forward - I do need to challenge myself a little at a time to progress and running around doing tons on 'good' days is a recipe for creating a 'trough'.  A more balanced approach to activity levels across my days is helpful to me.

Wishing you all lots of health and happiness, Rose 🌹xx

Monday, 14 May 2018

Hello everyone, this is me.

I'm the 'Rose' of this blog's title.  I have been working hard for two years to recover from Chronic Fatigue Syndrome (CFS; also known as Myalgic Encephalomyelitis or M.E.)

I decided to start writing this blog to help me record my recovery journey - as an online diary really.  I don't know if anyone but me will ever read it, but if you do and you have any constructive suggestions of things I could do to improve my health or my blog, I'm all ears.

I'm in my early thirties and was working full-time in my dream job, zipping round the country at weekends visiting friends, walking in the country, sipping delicious cocktails... you get the idea.  Then I got ill.  But I am determined I will get better.

I am really determined that this blog should be a positive account of my journey (though anyone familiar with these illnesses will know they are challenging beyond belief) so I don't want to dwell on the details and lows of the past couple of years, but in a nutshell and despite my best efforts, I'm mostly housebound currently.  


I've made good progress a number of times (using a variety of approaches - that's another post to come!), including returning to work and being able to walk as far as three miles in a day at times; but I've also experienced several major relapses which have left me unable to get out of bed much for months.  


I try to learn from my experiences each time, to build a more sustainable recovery in the future.  That's part of why I decided to make the blog too - so I can put all my learning out there to reflect on and hopefully grow through.  Even if it feels like trying to get through concrete sometimes - if the flowers can do it, so can I!!