What exhaustion feels like when chronically ill!

I remember when I used to finish a 12-15hr day at work and come home feeling to exhausted to make dinner so would chill and watch TV and order take out… that’s what I thought exhausted was, I was wrong!

Now I have good days and bad days and on my bad days the exhaustion is the worst. After just having two good days when I pushed myself to clean and sort our spare room I ended the day with multiple seizures at night then insomnia to follow through the night even though I was so exhausted I could barely stand.

Today now it’s so much worse as normal after good days. I’m so exhausted I can barely get out of bed, the very thought of needing to go to the toilet makes me tired let alone the thought process to gather enough energy and strength to make it 5m there then back without collapsing and having a seizure, the pressure in my head hurts so much more when standing that dealing with the pain of being upright is just too hard. I tried watching TV this morning but that was just too loud and took too much concentration too… I never you I could be to exhausted to watch TV!!

Food is too far away and the idea of getting up is just to complex, as I know how much pain it will bring, how much energy to make food not to mention the process my body has to go through to eat and digest it. So I don’t eat until it’s a necessity as hunger is easier than the struggle I need to go through to eat.

When this exhausted all symptoms seem to flare, even on medication my heart rate jumps to 135bpm just on standing, being upright can bring on a seizure, the headaches are 10x worse that my head feels like a giant heavy water balloon that’s about to explode as it’s so full, my heart skips more beats, my muscles ache everywhere, I get short of breath just by walking a few metres and my eyes strain over the easiest of things.

I go through this after each good day that I push my self even the tiniest bit, but I still do because on those good days I feel like the me I used to be, the me I have been grieving and having 2-3 bad days in a row are worth it to have 1-2 good days! Because my good days I feel worthy, i feel useful, I am happy and… I can get things done like washing and shopping, the daily things that any Healthy person can do easily … and accepting that that’s pushing myself, well I haven’t come to that acceptance yet.

So I now have an understanding on what real exhaustion feels like, I would give anything not to know as it’s absolutely the worst. When breathing is too exhausting you know your chronically ill! So when you have bad days like mine today, know your not alone, be great full for your good days, follow your bodies needs on your bad days, if that involves staying in bed all day like me today just do it! Your body needs it as it works so much harder than the average healthy person as it’s hosting a daily battle inside! Be good to yourself, you deserve it!

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