I went out for an early evening drink with a friend I hadn’t seen for ages.
That doesn’t sound all that unusual but for those of you with M.E., you’ll understand how out of reach such a normal activity can be for us. I’ve only had enough of an improvement in my symptoms to be able to do this again lately.
I suffered with post-exertional malaise for several days afterwards but I can now physically and cognitively manage an outing for 2 or 3 hours, including travelling time, as long as I haven’t already over-done it and if I plan some recovery time for a few days afterwards.
If you don’t have M.E. and would like to read more about how people with M.E. have to pace their activities, Sally Burch has written a great blog post about all the thought and preparation that goes into a person with M.E.’s daily life and what we have to do to participate in normal things for a short while now and then.
All of the things involved, such as being able to tolerate an alcoholic drink, making it across Bradford by public transport, on an evening, when daytime is better for me, and also sitting in a noisy room full of people, are all things we find difficult because of our M.E. symptoms.
I hadn’t expected such a large group of people to be sitting with my friend when I arrived and they were also people that I hadn’t seen since before this big relapse I had 3 years ago. I felt anxious when I was making my way across the pub to their table, dreading questions like “so what have you been up to?”.
One of the people with my friend said “Wow! I haven’t seen you for, like, ages!”
“Yes, it’s been 3 and a half years!”
“So what have you been up to?”
The whole table of people stopped talking to listen. The pause felt like ages. What I really felt like saying was “I’ve been in the same place all along and it never occurred to you to see how I was or find out what happened to me. I post on Facebook all the time about my illness. You should feel embarrassed not to have been in touch”.
I didn’t. Anyway, that would be unkind. Instead it was me who was feeling embarrassed, not them. I felt I had to justify what I’d been doing all that time, why I’d disappeared from view, to give a credible, meaningful answer to the question I dread so much each time I try to return to a normal-ish life. With something positive at the end of it to make it sound like I wasn’t being a moaning party pooper.
I answered, “Well I’ve not been well since I last saw you all, so I’ve been at home mostly and unable to work but I’m hoping to be well enough to start using my qualification for some volunteering soon”. Phew! With that over with, the conversation turned to the sewing and other things I’d been putting on Facebook…not the posts about M.E. though!
As the evening progressed it dawned on me that these people were sitting in the same seats, drinking the same drinks, in the same pub, having the same conversations, moaning about the same jobs and the same colleagues as 3 and a half years ago!
During that time, I had been in my isolated M.E. world, stuck at home struggling to do even the basic everyday things and finding the emotional implications of losing every part of my life again to a relapse intolerable. I had to find joy somehow in the really small things and the tiny achievements which feel like a big deal to us.
That evening I realised for the first time, that actually I’ve done loads in those 3 and a half years, even if it was all done from my bed and my sofa. These people I’d felt left behind by were just doing the same old things all that time. This realisation has really turned around how I see getting back into a semi-“normal life” again after a relapse. Hopefully I will remember this the next time I feel like the real world is leaving me behind!
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