So I am thinking I am a little better. Like 1-2% better. I have been able to start painting canvases for the first time in a a couple of years. My cognitive function seems much improved. I’m able to have 2 or 3 things scheduled a week instead of one thing every 2-3 weeks (like doctors, hairdressers, visiting parents, having lunch out, helping my brother with some design stuff). Things are looking good!
But then … I’ve had stiff shoulders and neck for weeks now. I’m taking migraine meds more frequently than I have for a few months. My glands are throbbing which is a pain that has been under control since I started the low dose amitriptyline. And last night I had to get Growler to cut my roast duck breast up into pieces for me because my arms were weak after trying to do it myself. Defeated by a roast dinner, a knife and a fork.
So whilst I may be 1% better I think perhaps I am trying to do 3% more and thus getting back some of the pains and symptoms that have been well controlled with low dose amitriptyline. Sometimes I can do that 3% but sometimes not. That’s the skill I am not quite managing of living with this illness – how to adapt to those fluctuations.
I often read about people with CFS/ME/CFIDS who have good phases were they feel able to do things and then flares where maybe they overdid it and they get a real bashing from their illness. I don’t get those good phases. Why don’t I get good phases? Maybe because I am trying to pace as best as I know how. So I am consistent and (hopefully) on a long, slow recovery path.
I think about how I felt, or more like what I was capable of, before I started my phased return to work in 2006 which ultimately left me where I still am now in terms of incapacity. I fought so hard to do those 4 hours of office work a day (4 days a week). After a few weeks I was fighting to do 5 hours a day. Then 6 hours. Then after what I thought was a slow, gradual, phased building up to recovery I crashed to feel worse and be more ill than I’ve ever felt in my life.
It seems those 3 months of trying to get back to normal have had a year and a half legacy (so far). For the sake of a few spreadsheets, a few dozen queries resolved (all really just a drop in the ocean for my past employer) here I am unable to eat a roast dinner without someone else cutting up my food for me.
Would I have been able to comprehend back in summer 2006 that 3 months of trying to work, even on a massively reduced scale, would take me more than 2 years to recover from? I doubt it. But I might have been scared enough to not risk trying.
Hindsight is a wonderful thing. A heads up from one of the doctors I saw in that previous 10 months of reporting I was ill and how something was wrong with me might have given me a much better chance. Ho hum.
I guess I’m recounting the story (yet again) to help me come to terms with where I still keep on finding myself and maybe in the hope that someone in a similar position – who is exhausted, grotty and feeling like normal things are getting harder month by month, and who is not getting answers from their GP, might maybe think twice about trying to tough it out. When they say pushing yourself when you are run down can make you ill they kind of understate what is at stake.
The way I cope with all this, the way I keep living and living as well as possible, is to focus on the positives and to focus on what I can do and not what I can’t. I can’t go back and change what happened in the past. You can only ever goes forwards in life. Even if you end up back at square one it’s never really square one because you’ve experienced a lot of things since you were there last.
So I shall make a mental note to adjust that 3% of extra “trying” so as not to add a longer or more painful chunk to my recovery. I have at least learnt that continuining to push past your limits with ME/CFS is almost certain to come back and bite you.
But I also celebrate that 1% extra that does seem possible. You have to love the 1%.