Write your own story
For a very, very long time I told myself I couldn’t get better, CFS recovery was a story, like a fairy tale, lovely to read but never a reality. I tried lots and lots of things, each bringing disappointment. As a teenager it was a challenge to continually pick myself back up, I felt like I was taking punches left, right and centre, nobody deserves that.
After 4 years I finally found CFS Health, then after another 12 months I finally decided I needed their help. So after having CFS for 5 years I was a little bit broken (*cough a lot broken*) but this was finally somewhere that understood me, understood CFS and had a pathway. One thing I noticed, was there were no promises, no commitments, just a ‘I give you the tools, you have to do it’ approach. No promise of a pill or a magic diet, just a logical approach to the illness.
Looking back here’s what I can tell you
CFS Recovery is like a jigsaw puzzle, but like a 15000 piece puzzle, the pieces are small and complicated, and the picture isn’t clear. But as we know, if you have all the pieces- the puzzle has to fit eventually.
So this is what I learnt- first with recovery you find the basics- sleep, routine, pacing, food, rest, movement, everything you’ve heard before- this is your puzzle outline, the edges and corner pieces. This initially, isn’t easy, but you know you can do it, you know you can at least get the outline.
From here it gets complicated, you need to find which middle pieces go where. Essentially it’s like finding the correct formula to a mathematical equation- you have all the symbols and numbers- it’s just about finding the correct order to put them in.
This is the same for your CFS recovery – you know what you should and shouldn’t do, you know it takes hard work, you know it takes time, and you know it’s not easy. But what you also need to know, is that it is possible!! You have all the pieces to your puzzle; it’s just about putting them in the right place.
As the puzzle goes on the picture gets clearer, and you develop a system that works for you, everyone builds their puzzle in their own way- remember that.
What I like to remind people is CFS recovery is harder than CFS, BUT at least you have a direction, least you have a goal. The puzzle eventually gets easier and easier to work out, and as time goes by, you start to do it all a little easier, and everything starts moving forward a little quicker- remember that too.
At the end of the day I figured out my puzzle, put the last few pieces in, and it was a finished masterpiece. Everyone needs certain things to help them do the puzzle, what works for you is what works for you; you know your body and illness better than anyone. I can honestly say that since finishing the puzzle, none of the pieces have disappeared, the picture is still there as plain as day. This is my terrible metaphor to say that I am 2 years CFS free, and no, there’s no way in hell it’s ever coming back.
I put in the hard work, found the light at the end of the tunnel, and days are still as bright and beautiful as always.
You have to put the pieces together, step by step it gets better and better.
Ask yourself what does better look like for me? What does the end result of the puzzle look like?
This is my way of saying; don’t ever give up hope, your puzzle is there, it’s ready to be finished, just find the right pieces to go in the right spots. I almost gave up many times, but I kept persisting, and as my favorite quote says- ‘everything will be okay in the end, if it’s no okay, it’s not the end’
Stay true to yourself, and follow your pathway to your goals.
Raeya CFS Health Coach