It was my “birthday week” the week before last. I had a good week! I was careful to rest and eat nothing different (like cake) as i planned to go out into town on the Sunday to meet some friends. It really felt like a whole week of celebrations though, with cards, messages and presents trickling in day by day (unopened of course!). I was feeling a bit down after Christmas, just struggling in general, and it was nice to feel my mood lift (if not my energy levels) and to feel genuine excitement about my birthday, getting some presents and going out to see friends i had not been able to see for months. As usual i was blown away by the kind and thoughtful messages, presents and the efforts people went to in order to make me feel special. It was really nice and a much needed break from the norm.

I did make it into town and went to an art gallery, saw my lovely friends, then also stayed in town for an early meal at a place which does food i can eat (rice and tofu based). I will never forget the taxi driver’s face when we asked him to drive me a very short distance along the road, he seemed to be unable to understand that, yes, we really do mean just along the road there… he didn’t refuse though, which was good. Although i became uncomfortable sitting in the restaurant with heavy blood-filled legs, i felt pretty good while out and it felt so nice I did not want to go home. I knew i had to but it felt like so long since i was out and about, i did not want it to end.

It almost seems easy when i am out and not feeling too bad and i find myself wondering why i don’t manage such things more often, until i remember the whole week of resisting the urge to leave the house (despite feeling quite stir-crazy at times) or do anything more than the basics, eating safely, the morning of lying in bed trying to get that extra boost of a nap, the day before of preparing myself, making sure i was bathed, hair washed etc so i did not have to do before i left, and the inevitable recovery time which would be just as long, all for three/four hours of being out.

This week since the trip out has been a hard one. I did not get a proper full recovery from that before other things happened. A decorator came the next morning which i had to get up for, after not sleeping well at all (as usual after doing something stimulating/exerting myself in any way). As it happened i managed to have a bath and go back to bed and sleep with my earplugs in while the decorator was here and when i woke up she was almost finished but still it was not as relaxed as i needed. My stomach was upset after the meal out, despite being so careful, which always saps my energy. Then there was the hospital appointment a couple of days later which should have been quick and easy, taxi in and out. Long story short, i looked on the website to find the appropriate entrance but it was incorrect and i did not ask for a wheelchair transit as i did not know how far it was (thought i was ok and receptionist made it sound like not too far) and walked far too far. Had a POTS episode (didn’t actually pass out but got to the department in a bad state, could hardly stand/breathe/talk) had the very quick appointment  after recovering a while in the waiting room and then went home. That evening i felt awful and i am still recovering from that. I also had to pop out briefly with my partner on Friday, she drove me only ten minutes each way but i ended up sitting in the car for 3/4 hour and although it was no exertion and i was relaxed and warm enough, it just sapped that little bit of energy i had left away… Last night i could hardly function and the tv was too much for me even really quiet so i was in bed from early evening and only just got up properly about 16 hours later. I have slept a lot so i hope i am ok now for my dentist appointment tomorrow… very tempted to cancel but i really need to go, it is overdue.

There is more plastering/decorating happening in the next couple of weeks but i won’t be alone with them so hopefully i can ignore it mostly. I hope things calm down a bit as i hate getting myself into that really bad state by overdoing it. It is distressing to feel so ill and incapable of simple things (like holding a mug without dropping it – it bounced luckily). I have felt quite emotional and i think that for me is one of the main benefits of pacing well, it that i can avoid burning out completely and feeling so helpless. When i do very little i can still feel pretty bad, but it is different to the feeling of teetering on the edge of total meltdown… some little voice says, have i broken myself this time? Will i get over this crash this time? My usual level of functioning may not be great but it feels so different to that.

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