Today is a Grump Day

how I manage my chronic illness when it is kicking my butt, oh and a poem

Hi all,

Today is a grump day. This is a day I allow myself to feel sorry for myself and I even wallow in it. I allow, nay even encourage, myself to sit with my feelings and dive deep into them letting them enfold me within. I let them wrap me up and almost cosset me; these feelings of doom and gloom, of feeling impotent in the world unable to make my mark. I need to sit and be still. To just be. To accept the silence and wonder at the small things. But I DON’T WANT TO. I want to stamp my feet and yell at the unfairness of it all, but I don’t have the energy. I want to scream and yell and force the universe to give me back my life, but I don’t have the energy. I want so much that for most people is normal and can’t have it. My quiet moments are enforced through my illness and it took me a long time to learn to treasure them. I so wanted to be doing, to be living (as it seemed to me then), to be worth something through my efforts. Now I sit with those quiet moments so often I've learnt to relish them, to invite them in. Most of the time I enjoy them but there are times I struggle against them, the frustration of constantly doing nothing as painful as the doing itself would be. The effort of being positive in the moment, the taking the joy in the little things, is sometimes so sad it's palpable. But I live for those little quiet places too. Just not today.

Today I can’t see properly. The world is a shadowed blur. I haven’t been able to see properly for a few days now, and today is the day it is getting me down. I’ve been to the opticians, the Drs, and the hospital, they can’t really explain it. I have mildly dry eyes but that shouldn’t be causing my symptoms, double vision, blurriness that is worse some days than others, the heat that emanates from them that only I can feel. Apparently it must be in my head then. Only one person understood, but she had no clout. On bad energy days, my ME/CFS causes vision problems. My muscles are too tired to cope, no amount of eye exercises is going to help, in fact this being ME/CFS it will probably make it worse. The fact that some days I barely need my glasses at all is an enigma to them. The fact that some days my glasses just aren’t enough at all means I'm making it up for attention. I’ve give up complaining to the medical profession they are not willing to help or care it seems.

Recently I decided to make a wee knitted frog, one with an armature so it could be stood up and posed. I bought the pattern. I tried to print the pattern. My printer, weirdly named Pope Pious Printer (purely cos it alliterated), decided to play up and it took an hour and many attempts to print 11 pages. Then I searched for yarn. I have masses of yarn stashed around the house. Nope, needed to order some, so I did. Waited for it to arrive and in the meantime bought some safety eyes and armature. It arrives and now I don't have the right sized needles. I have so many and none this small. Order the needles. Eventually after 2 weeks everything has arrived and I start. Except I don't. My eyes are playing up and I can't see the stitches. It's been 5 days now and I still can't see properly. And these enforced quiet moments are beginning to gall.

Whilst writing this I am watching Cirque du Soleil. Watching beautiful people whose bodies work giving the most wonderful sublime and surreal performance, and I am jealous. Once upon a time I actually would have had the energy they had, although not the skill or the training. A young man is spinning up high and I am reminded of the times I swung like him upside down on a tree swing or the such like. I was flying. Going too high, too fast, too many rotations but I loved it. Swinging and spinning were wonderful, the swirling of the world around me, the twisting of the clouds or grass depending on which way up I was. I would spend hours upside down hanging off the world watching it pass by. I can vividly remember the feeling of my muscles working well in my body, my blood coursing strongly, my breath delivering oxygen with precision. I was fully alive, strong, vital. I revelled in those feelings then. I broke my collar bone again taking a swing to it’s very limit so I could jump off at the apex of its height and feel I was flying, suspended for that all too brief moment before I hit the gravel with a crunch and my newly healed collarbone sprang apart again. It was worth it for that wonderful fleeting feeling of flight. A tenth of a second of pure unadulterated elation. Bliss.

So, anyway, today is a grump day. Wrapped in a blanket I crocheted myself, half watching the television, musing on better times, longing for better eye sight; grumping. Tomorrow will be a better day. Tomorrow I will be back to looking on the positive side of life, of enjoying the small spaces of calm rather than resenting their interminableness, noticing with joy rather than irritation. Tomorrow will be better. but for now, bah humbug.

Have a poem.

The day lingers on . . .

He brings me my pills and watches me take them; 
waiting for the glass he lingers until I hand it to him. 
Today I am the patient and he my carer. 
Today I am helpless and that devastates me. 
I don’t want this life, 
I don’t want him to look at me with pity, 
I don’t him to be my carer. 

I send him away, 
‘go walk the dogs’, 
take time away from me, 
do something himself.
Go do. 
Have the life I can’t. 
And yet I resent him for being able to live that life. 
I’m jealous of the time he can spend; 
spend doing, spend living, spend enjoying himself. 

When he returns I quiz him, 
trying to live vicariously through him, 
grabbing on every detail he gives. 
But he is tired and doesn't want to talk. 
He smiles that wan smile, 
the one that breaks my heart, 
the one that tells of his love but is distant. 
This broken shell is not what he married. 

I’m lucky he has stayed this long. 

copyright T.Chennell 2024

Don't worry though, I'll have this grump day and then see the beauty of everything once again.

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