Why I hate being unable to predict spoons accurately – This is what Chronic Illness looks like

Today is yet another a beautiful sunny autumnal day, with fantastic colours of leaves on the trees and from my sofa not a cloud in sight. I’d planned to meet up with a friend today to let our children go crazy running around a local forest and enjoying all the play equipment. They get on really well and my LG has been looking forward to it all week. So what happens Friday morning arrives and I cannot move, I mean literally moving any part of  my body feels like someone is twisting a knife in the base of my spine and this pain ends in my foot.

My daily dilemma here is do I once again let my LG and my friends down or do I unsafely force myself out. This really is no dilemma, as I’d never get in a car on a day my pain was in control of my body and not the other way around. So I very apologetically text my friend and explain the situation. She as I expected was totally fine with me letting her down, and I am very lucky that I have such good people in my life who are understanding when I have to let them down. Far from being angry she offered to pop straight round and help with the breakfast and dressing of my LG. How amazing is that? Here’s me stressing and metaphorically pulling my hair out about once again letting people down and having to tell my LG that today’s trip was off and my friend was offering to come and do breakfast. Fortunately my folks were on stand by and after texting mum they were going to be here in next to no time. I long for the day when I am back in control of my pain, that we have settled down on a new routine of medication that enables me to have at least some resemblance of a life that is under control and to stop letting people down. Even my LG has some sort of sixth sense when it comes to the amount of pain I’m in, instead of being her usual manic, whirlwind self this was her this morning………

I'm Tired, can I just have cuddles this morning
I’m Tired, can I just have cuddles this morning

Not only was she aware of the pain, but also how guilty I feel not being able to play with her as much as I would like too. This morning instead of the 1000 can I please play Fireman Sam figures, or puzzles, or Star Wars Dolls House, or Doggies or anything else I got Daddy I’m tired can I just have cuddles. How beautiful and amazing is the heart of that LG who isn’t even 3 yet! Especially since the minute my parents arrived and let themselves in the whirlwind returned.

I know not everyone has the amount of support and understanding from their families and friends as to what life like a spoonie really is like, but it makes days like today more bearable.

To compound the bad day, it was a fellow spoonies 50th Birthday so he’s having to wait for my suitably polite card and present, and my brother in law and eldest niece were about this afternoon and text to see if we could catch up and I had to say no to them. My niece has recently qualified as a midwife and will be leaving  the county soon to work full time, so I really wanted to see them but the extra meds were literally making me a dribbling dosing mess.

I recently read a blog from Indisposed and Undiagnosed (link below)


That was entitled this is what Chronic Illness looks like, I thought this was a fantastic inspiring piece so took this picture in response to it. It is my new favourite t-shirt and for me sums up what chronic pain is like.

Pain free 0 days
Pain free 0 days

Pain free 0 days, yes that is zero days, because that is what life is like, there is not one day that I wake without pain, now this isn’t about pity, sympathy or empathy it’s just explaining what chronic pain is like for me. The stabbing pains when I walk, the dull ache when I sit/stand or lay, the feeling of hunger, headaches, slow fuzzy mind, dry mouth, tight gums etc as a result of the medication and worst of all letting people down time and time again because no matter how little you have done in an attempt to save spoons it makes no difference in the long run as your body dictates to you when you are going to be laid up and take over 12 hours to type less than 900 words! Something that you used to do in under 30 minutes. So there it is chronic illness for me is having no pain free days just some better days and some worse ones, and thankfully enough amazing friends and family to help and understand and keep the light at the end of the tunnel lit especially on the days my body seems to extinguish it for me!

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