Walking on clouds

This blog has begun by me writing and deleting the first few paragraphs over and over, unable to get the words that I want to come onto the page. It happens like this sometimes. I know what I want to say but the words just refuse to come in the way I want them too. It can be frustrating but I know if I start over enough times I will eventually hit on the right way to start things off.

In this way writing my blog is comparable to working out the best morning routine for dealing with my CFS. Over the past 2 years I have tried numerous ways to allow myself to get the most out of the day but it was only recently that I have finally cracked it. I used to let myself sleep until I woke naturally but doing that meant I would sleep till early afternoon then not get to sleep till the early hours of the morning. In an effort to get a better sleeping pattern I started setting an alarm to make sure I got up at the same time everyday. This worked a bit better but since I was used to sleeping late I set it to go off at 11:30 to begin with. Over the course of a year I finally manged to get this down to 10:30, it was an improvement but still less than ideal.

For the past few months I have been slowly changing the time I wake up. By moving the time by 10 mins every few weeks I have finally managed to start waking up before 10:00. Something that a year ago I would have thought impossible.

But getting up early enough to see the morning isn’t the only change. Graded exercise therapy (GET) is considered one of the key things one must do to recover from CFS but it also has a really bad name within the community. When it was first suggested to me I refused to try it. For one, I couldn’t see how it would help. I have a physical illness, not a form of deconditioning. How would training my body to do more help? I was also aware that for many people GET makes them worse. Having found a routine that let me do some things that I enjoyed I was unwilling to try anything that might make me worse.

But in the end I was persuaded to try. While the science behind CFS is limited the only people who get better seem to be the ones who use GET, so while I might not really understand quite why it helps, I had to admit it was worth doing.

The other thing I felt I needed to make a change with was my writing. I have mentioned (I think) that I am working on a novel. Its been my main focus for over a year now and also shown me that I want to write novels as a career. But while I found the first draft relatively easy to write the first round of editing was taking me ages. My brain struggled to concentrate for long enough to get anything done. Progress was so slow I was getting frustrated and I was unsure if I was making any real meaningful difference.

In an effort to make progress more steady I started to limit how much I would do in a day. Instead of working until my brain went to mush I would only allow myself to do a single page. I wasn’t really sure if this would work. It was an attempt at GET for the brain, to begin with it was frustrating. I still wasn’t making massively steady progress and often my brain simply didn’t wake up enough to be any use.

Then I started to walk before I wrote. I would take my morning walk round the common close to the house, then come in and work on my novel. I never thought I would say this but at that point my morning routine clicked seamlessly into place. Everything seemed to be working and progress in all areas started becoming apparent.

If someone had told me back when I made my first tentative steps towards the recovery process, how quickly things would get better I would never have believed them. The idea that a few simple changes would have the power to change the direction I was heading in quite this dramatically was absurd.

But it happened. I feel a million miles away from where I did a few months ago. My days are longer. I walk twice as far in a morning then I did when I first started. I’m well over half way though the editing process and progress is delightfully steady. I can concentrate for much longer and my days while still quiet, feel so much better than they did.

There is an excitement that wont leave me. A feeling of change. The future no longer feels like an impenetrable mass floating just out of reach. When I was at the CFS clinic earlier in the month the woman I see asked me where I thought I would be in 6 months time. I refused to answer, not because I didn’t think I would have made more progress but I have learnt that plans never really work out the way you expect them to. I know 6 months from now I will be a long way from where I am now but I’m not putting a timescale on my recovery. It will take as long as it takes but I know if I stay positive, keep to baby steps and manage things properly, the future is bright.

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having fun on the river

As always, if you like what your reading please share on Facebook and twitter. Links to my pages can be found along side the post!

with love,

The girl with the braid in her hair

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