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This last weekend I went to my sister’s wedding. My partner drove me and the dog the five hours each way to Wales and we stayed with my mum, which was really good, except for our room being on the third floor!!


I was quite worried about going as my levels of energy and stamina have been so low recently and the thought of the travel, talking to so many people, getting through the wedding day itself, potential payback and just everything about it was very daunting.

BUT it went quite well. We came back on Tuesday and although i don’t feel too good, ache all over quite seriously, and seem to be getting a cold, and can feel there are still days of recovery to go; I can say i have survived!

There were some very dodgy moments: on the wedding day i felt pretty bad in the church. I already had “permission” from the vicar not to stand for hymns etc (which on the one hand seems silly as if you can’t you shouldn’t need to get permission, but as i was in the front row it did make me feel more comfortable with not getting up to know that most people knew why) but i had to not sing as i was so lightheaded as well. After the service we went to the reception and i could hardly hold my head up and keep my eyes open until lunch came at half past 3! I ate it then left for bed before the speeches. I could not really rest properly but had two, one hour rests with some food in between, then at 8pm went back to join in the evening do. I actually got a second wind and really enjoyed it: talking to people, meeting some of their friends i had heard about but never met, as well as some of his family and actually DANCED with my sister (for half a song – maybe 2 mins) but my spontaneous act made her cry, which set me off too and it was a good “moment”! She has ME as well, so it meant a lot to us to dance together!

My body seemed to find some energy or be running on adrenaline for several days, which was very convenient, if a little unwise. It was nice to feel it perform for the occasion, even if it goes against all the pacing rules. I could feel it waning by monday, as even though i rested well on sunday i still felt ok. The journey back was hard. It went fine and the traffic was fine, it was just my body and my brain that were not and i found it very hard to cope with. It was like being strapped to the front of a torpedo and rocketting forward out of control not knowing what i would hit, but feeling very much in danger. Not being the driver can feel scary, even when i do trust the driver as motorways can be scary places – but when my brain is not processing information properly i think it feels much more scary. I would have been happier on a horse and cart going about ten miles per hour – it would feel less violent. I also found i was pushing my feet into the floor of the car when we were braking as if to help us stop subconsciously. Even when i realised i was doing it late into the journey (leg pain was a giveaway) i found it hard to stop… just so exhausted and wound up.

So i think i have not perhaps even properly crashed yet… i am in pain and i am spending a lot of time in bed but i am ok. I hope this is it, but i fear i have a cold so this week may not be much fun. At least i can sit in the sun a bit if the forecast is right! I am so glad i was there and took my place at a family event.

It was lovely weather when we were there and the day after the wedding lots of hot air balloons flew by, which was a really nice surprise! I love the sound of them and have always wanted to go up in one. It was nice to have that random surprise event too!

ME/CFS Awareness

ME/CFS Awareness


December 2020