A Change of Plan

I hate having to change plans. I hate it, I hate it, I hate it.

Don’t get me wrong, I’m as flexible and spontaneous as the next (chronically ill) person. But when I have to change plans because of my illness I hate it. It doesn’t feel like a fair choice. It feels like my hand is being forced.

And that’s where I am this weekend. I have had to change our plans for the weekend because my stupid stupid body is not playing ball.

It is Mr B’s birthday on Friday and his Mum and Grandad are making the trip from Shropshire to London tomorrow for a family Sunday lunch to celebrate his birthday. The plan already revolved around me and my stupid body even though it is not my occasion. Mr B’s brother and sister both live in London too, and we were all to meet at our place and then go for Sunday lunch at our local pub. We were doing it local to us so that I didn’t have to provoke my beastly body by travelling too far. Even when it was Mr B’s sister’s birthday earlier in the year we met at our place and went to our local pub to accommodate my limited energy needs. I hate that it always has to be about me because of my ME/CFS.

And now I have been forced to change the plan; to bow out from the Sunday lunch at the pub thanks to my body’s decision to inflict flaring fatigue, heavy pain, burning achiness, dizziness and headaches of higher proportions than is my bearable ‘usual’ level. So yes, I will not be going to lunch with Mr B and his family. Instead I will be staying at home resting on the sofa.

Mr B’s Mum is so understanding and suggested we just have take away at our place to save me the effort of going out. But Mr B and I fear even that will be too much for me right now. After an hour of chatting and socialising I wilt at the best of times never mind when I am mid flare. So we have compromised with my body and everyone is going to come here for coffee before heading out for lunch. This is hopefully enough to pacify my body and quell any retaliation from ME/CFS. I will not play hostess (have well and truly given up on that by this point, my friends are well used to making their own cups of tea when they visit). I will merely sit and chat for a little bit so I get to see Mr B’s family and then I will rest.

I’m telling myself that this is better for everyone all round. Eating out with my long list of food intolerances is a little (haha, understatement of the year, massively, gigantically) tricky and requires energy enough to decipher the menu and discuss my requirements persistently with the wait staff. Nothing like spoiling a meal out with a barrage of 20 questions about traces of ingredients, checking this, checking that, all for just one roast lunch.

But I hate having to change plans. I feel bad and guilty for having messed up the plan. I feel sad that I’m missing out. But more I am annoyed. Annoyed with myself. I feel like I’ve failed at managing this illness. After 3 years I thought I’d got the hang of it. But no, still there are curve balls that throw me out of whack.

I totally underestimated the impact of the mini break away in Sussex last week. Even though I didn’t push myself and do too much whilst there, or so I thought,; even though I stuck to my diet; even though I used my wheelchair when out and about; even though…..the list goes on. And now there is no point dwelling on it. That is a waste of energy. And as you know energy is in limited supply around here. Learn the lesson, rest lots and move on. The flu jab shenanigans at the start of this week have just compounded things. Two outings in two days was never going to end well. And on the back of last week’s trip away, I am now forced to admit, ‘what was I thinking’?!

I naively thought, despite my consultant’s firm warnings, the flu vaccination itself wouldn’t affect my poor body. I thought if I did have any side effects from it, they would be full blown flu or nothing at all. But of course that’s silly. There are fifty shades of grey after all. And thank God, touch wood three times, throw salt over my shoulder etc, I do not have full blown flu as a result of the jab. But I do have something. The achiness and sore throat is not ‘just’ ME/CFS. But lets hope that my shade of grey does not getting any darker. And by taking it easy and not going for lunch I quell the tide.

But no point stressing or dwelling about it. I am where I am. Learn the lesson; file it way ready for next time and move on. There were reasons for getting the flu jab this week, which I won’t bore you with right now. Suffice it to say it had to be done this week.

Sometimes that’s just the way it is. I haven’t mismanaged anything. I have just tried to make the best and do the best in a precarious situation.

No point stressing about it. Learn the lesson so you avoid future repetition and rest so that in the not too distant future you are well enough to move on; to pick up the pieces and start again.

I think I need this mantra on audio loop or plastered all over the white walls of our apartment, maybe then I’ll stop and believe it.