A spoonful of self-pity

I am raging against the spoons!

Or at least the idea of having to ration my energy and activity to enable me to function at a steady level. Today is my third day of taking to my bed after the school run because even spending that “spoonworth” of energy means I need to have another nap. My pins and needles are back, my vision is blurry, my cognition is reduced and the word finding difficulties are comical (to everyone but me.) I can’t rouse myself to do the most basic of tasks and feel like I am moving through treacle just putting one foot in front of another.

In other words it feels like I am relapsing, but I don’t think that’s what it is. I’m simply burnt out because I STILL (four years post diagnosis) try to live at the intensity I did before. Last week I did two consecutive days at theme parks followed by a seventy hour working week (including four night shifts) PLUS a Little Mix concert (too much thrusting, not by me) and a meal out with friends. “Work hard and play hard” and all that. Except my body no longer wants to do anything “hard.” It would like to play only quietly and is not really sure it can cope with much work at all. I have my dream job and at the moment I am simply trying to survive until the end of each shift. I can’t really hold a decent conversation with anyone because I forget the words for things half way through sentences (or I say the wrong word and people think I’ve gone a bit barmy. The only people who don’t bat an eyelid at this are my children who are experts at interpreting “pass me that long stick” and knowing I mean the cucumber!)

So I gave in to self pity. I made a list of annoyances and dwelt on them. I posted an indulgent rant on Facebook. I had a little cry. I WANT IT ALL. FOOT STAMP, FOOT STAMP.

And then I came to my senses. And once again (I am like a stuck record) I realised how incredibly lucky I am, not only to have what I have but also to be not facing what others have to face. Quite apart from those in the wider world facing horror, hunger and hardship I have friends who face daily battles. They have poorly children or are sick themselves. They face huge uncertainty about the future for themselves and their families and they do it with dignity and stoicism. I am relatively well. The MRI I mentioned in the last post showed no further lesions. My MS is not deteriorating despite what I feel this week. And people are consistently lovely to me – warm, kind, encouraging, patient. Not one of you had pointed out the obvious – that I need to just take that final step in the cycle of grief and ACCEPT that things are now different. Life needs to be slower. Workloads need to be reduced. I need to be mindful of those bloody spoons.

So, I am going back to sleep. And when I wake up I will send the email asking for an adjustment to my working hours. And then we’ll see what life brings next…