The problem for me as a spoonie, and so far as I can tell from speaking to other spoonies that I know, is that for all spoonies we just do not know how many spoons we have at the start of the day. Compound that with the uncertainty as to how many spoons each activity will use up and you have a recipe for disaster.
When you’re having a good day you want to do as much as possible, whether that means going out, or doing an odd job around the house your mind-set is “I must do this to help the others who do so much for me” , or “I must make good use of the weather and feeling ok”. We all know that the after effects will potentially mean a half finished project or a shortened day out, followed by a far worse day so that begs the question WHY DO WE DO IT?
I have heard this comment in passing and believe it or not I have been asked it on more than one occasion. I have to say though I am very lucky that I have good understanding family and friends for the most part. I encourage them to ask questions like this to my face as there is no better person to answer the truth than me, it helps others understand and enables me to continue on my journey of acceptance.
The reasons why I do it;
- Life would be boring, if I didn’t do everything that hurt I’d do nothing. Just showering and toileting hurt.
- Having fun is important for my own mental health
- My physical therapy and physiotherapy can be incorporated into some of the activities
- All rest and no fun makes for a very grumpy me and sad life.
- On good days I want to help relieve the burden I am to others on my bad days.
- I don’t want my children to miss out on a ‘normal’ upbringing
- I feel like people deserve more than I can offer
- I have amazing famiends and being able to give back to them is vitally important to my wellbeing
- I want to contribute to my family, my community and society
- I don’t want to become a hermit like I have in the past.
- I need to keep as healthy as possible to avoid additional strain on my spine ( #dietingistough)
- Life is so dictated around meds, baselines, good days, rest days and everything else that I feel like I have lost the adventurous, spontaneous and fun side of me
- I rarely know I’ve over done it until I’ve over done it.
The problem for me is that my spoon crash occurs in one of two & neither are fun. I either get the PAIN Sweats, I cannot control them, I cannot stop them and it does not matter where I am. Not a pleasant sight or state to be in. I’m not sure what is worse though, this or the alternative which is like my body having a comouter crash. Uncontrollable dozing, mid sentence, mid text, mid film, mid walking, mid almost anything my body just shuts down. Doesn’t matter where I am and this also has complications. I have been known to be considered to be drunk I’m that unsteady and out of it, when I’m stone cold sober.
Life would be very dull indeed if I didn’t make the most of good days, I’d get a lot worse if I didn’t do my exercises every day, even the bad days. The spoon crashes are inevitable as daily life goes on, so why not have them crashing because of a little bit of fun every once in a while.
The only real downside to that is the recovery time, it can take minutes, hours, days, weeks and sometimes months or years so we always have to hold a little back and hope that we haven’t miscalculated our reserves.