The improvement in my health from August 2014 – March 2015 and now is dramatic. I was either working or in bed. I couldn’t walk 20 meters without needing a rest and on a couple of notable occasions calling my husband to come and get me from the corner of the road and help me home. I was using a wheelchair to go anywhere more than 15 minutes. This is all because of my EDS-HT.
The hardest thing was the utter mental exhaustion. All of my brainpower was going at work, I couldn’t read or focus outside of this. By Christmas I was struggling to have enough focus to watch children’s programmes or films.
No way to live a life.
Essentially I got really selfish for a while so that I was able to concentrate on getting well.
I used all this extra time to rest, heal and to work on my rehab and learning to walk properly again.
This has worked. But it has meant some serious sacrifices along the way. I am really careful about how much I go out. I make sure I have every third week with no meetings. I only have two meetings a week at the most.
I only do client work 3 days a week. I work according to my body, sometime sitting at my desk, sometimes standing up, sometimes sitting on the floor, sometimes from bed. Somedays a mixture. Whatever it takes to be well.
I might nap, or I might go for a walk in the middle of the day if that is what I need to do.
I spend a great deal of time on things which make me well, exercise – especially walking and swimming, eating healthily (although I still have a long way to go on this one).
Obviously this wouldn’t work if I wasn’t self employed.
And even more obviously this has resulted in a lower income than when I was working full time and flat out. But I have learned to adjust to that and the price to feel well and to be able to read, write, and play music is one I am happy to pay.
I still have to live within my limits, but those limits have grown, quite literally a step at a time.
Radical changes in my lifestyle have meant radical improvements in my health and I hope it may continue!