This has got be one of the most upsetting questions, and guaranteed to floor me everytime.
I was diagnosed with SEVERE CFS/ ME four and a half years ago. To get this diagnosis you must have been ill for at least 6 months and any tests that you’ve been lucky enough to have had will all show that nothing is actually wrong with you.
I’ve actually been very lucky and have had quite a good run over the summer. This has mainly been due to ‘pacing’ any activity, sticking to my wheat, dairy & sugar free diet rigidly, and,most importantly, avoiding any forms of stress like the plague!
Today though, after a few days of perhaps pushing myself a little too much I’m reminded that it’s still here, a reminder that I’m not recovered , or anywhere close, just yet.
What would I have chosen not to do though? If I look over the past few days in particular, I drove my sons to various friends and cadet camps, I achieved a three year goal of driving myself and my mum to a Bee keeping equipment sale, and despite resting in between and even during all these activities, I then went to dinner at a neighbours for her birthday. I still only ate what I allow, I resisted alcohol, sugar, cream, cheese and rudely left the toast that the delicious crab starter was placed on. Left at 10.30pm and today my eyes stopped working. I stayed in bed until 1, then had a long Epsom salt bath, then another rest after a light lunch. No way I could drive anywhere today, or even sit in a car as a passenger. Certainly couldn’t walk to my neighbour’s house.
Despite all this, I’m feeling ready to admit, that overall I am feeling better. On thinking though, maybe I’m just better at managing things. I’ve learnt my limits. I know that a whole glass of bubbly, or fruit or sugar after a main course would be fatal. I know that I have to block one ear to ‘hear’ what the person next to me is saying. My husband also knows to politely ask if any background music can be turned off before I settle down for any social engagement. I also know that i still need to spend three quarters of any day lying flat.
After this long do you just get used to ‘being ill’? If I compared this week’s activity with my pre illness activity, I would say I’m running at 30%. That is fantastic when I have had years of running at 5% or even minus figures.
Should I expect any sympathy for ‘crashing’ today. Will this crash last into next week, or even the week after? All those little errands,over the next month, or visits from friends, should I cancel them now? Maybe not yet, I may not crash just yet.
What if I was to recover, how would I know if I didn’t keep testing myself?
Two major things are definitely helping me feel better right now. The first is that I have an appointment to see a specialist in October. Maybe I’ll have some tests, and then maybe I’ll find out if I really have ME, or if I have a genetic condition that made me predisposed to having ME?
The second thing is that after much planning I completed a painting commission that I started five years ago just before I fell ill. It really nearly finished me off for good. Emotionally and physically it was exhausting. I needed so much help with everything else, just so that every ounce of energy could go into that painting. But at last I can see what has been an open file in my head, closing.
Whether I am getting better or not, I do at least know that I don’t want to paint again. That will shock and maybe even upset some of my friends and former customers. I feel very happy with that decision, it allows me to clear more clutter, to start afresh and think of what else I’d like to do in my life. I painted full on for over twenty years, I’m painted out. I want to smell roses now, not paint them.
I recently heard that I’d passed my Beekeepers ‘Basic’ exam. A huge achievement with all my brain fog and physical disabilities. So I am blossoming into a beekeeper. The artist has passed, and maybe never to return again. It took years in bed to enable me to change direction.Shame I didn’t have the confidence, wisdom or strength to change direction without the illness. I wonder if the butterfly has to go through pain during it’s transformation?