Invisible illness, Mama mifsud blog

When ‘fatigue’ isn’t enough to explain how you feel

Aside from the constant pain and guilt, living with chronic illness is mostly like swimming through treacle. Or walking with lead boots constantly welded to your feet. It’s near on impossible to describe what this kind of fatigue feels like. In fact fatigue is almost too mellow a word, it in no way describes the overwhelming and constant feeling of utter exhaustion.

I recently had an operation to remove my Fallopian tubes. With all the diagnosis I have, risking more babies is not an option and contraception messing with my hormones leaves me with even more hemiplegic and ocular migraines than I would have anyway.

My body struggles to normalise everything; cells, blood, temperature, hormones, all those things a normal body does without trying, my body gets confused by. A simple way to demonstrate this is my temperature, it will fluctuate with an hour between raging highs and dropping perilously low, as my body attempts to find it’s normal. Or if I kneel down, my body panics and thinks it’s under attack; within minutes I’m covered in bruises as it sends in the Calvary.

So I had to have this operation, even knowing that it would be a tough recovery.

The procedure was an absolute success, swift and text book with the added bonus that the biopsy of my innards came back clear. I had been warned that the aftermath would be much harder than for a healthy woman and it was. I was bed bound for two weeks and could barely sit up or engage with anyone. Then my joints started to seize up. Then my muscles started to spasm. The pain made silent tears run down my cheeks as the spasms in my legs forced my body to curl, aggravating my abdominal wounds. I started trying to do my physiotherapy and move my body, but then the fatigue hit.

I had to get moving again, the children needed me and my partner needed to go back to work after nursing me and caring for the children for longer than I would have liked. So I started with some trepidation, to engage in real life once more.

Six weeks on, I still don’t feel ready despite having returned to my own kind of normal. It’s the exhaustion that’s beating me. My body has decided to get into such a pickle, anything I do is too much. I sit currently in a house with piles of washing, dishes, toys and endless jobs to do but I can barely lift my arms to type this. I hate it, literally hate it.

Climbing the stairs feels like climbing a small mountain.

Standing to washing up, I feel like I’m sinking through the floor into thick oozy mud.

My fingers are on fire and curling up each time I stop typing, rebelling against the movements I’m forcing upon them.

Getting up from the chair makes my muscles burn and my head spin as if I have run a marathon.

Walking involves huge concentration and determination to lift one leaden foot after another off the ground.

Shaking the brain fog from my mind to compose this sentence has taken days.

This is not just being tired.

When I am well I exercise as much as I can, I also have four children so know all too well what the exhaustion of young babies and children feels like, but this, this is another level.

Imagine you’ve just run ten marathons back to back, sleeping for tiny pockets in between. You’ve fallen over a number of times and twisted ankles, bruised knees and scrapped hands. You then celebrate the completion of your goal by staying up for two days straight, drinking the bar dry. After that you jump straight back to the reality of looking after four children and running a home.

That’s what it feels like every day, the ‘fatigue’.

But you can’t say “I just ran ten marathons”. You can’t say “I pulled a double all nighter”.

There is no good excuse, no logical reason to give, that is tangible enough to understand why your body feels like this. For yourself, let alone to family, friends or the army of irate ignorant people that lurk around far too many corners.

It just is.

So to all the other warriors out there, I see you. I understand. I know, without words, how you feel.

But please, don’t give up fighting. Don’t give into the darkness of defeat. Rest. Practise Self care; read, talk, eat, sleep.

Then drag yourself up and try again tomorrow and the next day and the next, until one day the fog will lift enough for you to smile again. It doesn’t matter how many tomorrows it takes; you are not a failure, you are not weak, you are not lazy and I promise you, you are never ever alone in this. You have me, as well as a cyber army of other warriors that will always, always understand.

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