This is what it feels like…

You want to know what chronic illness feels like?

Chronic illness feels like having a great job, but never having the energy for it. It’s being fucked whether you bullshit that you’re ok and push through till you’re a complete wreck and collapse, or are openly honest that you have serious limitations due to your health. Either way you’ll never feel secure in your position and you’ll always take too much sick leave.

It is finding the perfect door into your dream career and knowing there’s no point applying for it because you’re on your fifth or sixth lot of antibiotics for the year and it’s only early April, which means winter is going to be hell and there’s no way you’ll cope with full time work. You’re not sure you’ll manage to cope with your part time job as it is. Maybe because you’re barely coping with it at all right now.

Chronic illness is having to convince yet another fucking doctor that you’re not a hypochondriac. It’s having to push and fight every fucking inch of the way to get the care you need, to convince them to stop treating your individual health issues as individual problems and let you speak to specialists about the potential of them being symptoms of a larger issue.

It’s being perpetual tired and sore. Always. Literally always. Aching muscles, aching joints, and fatigue greet you when you wake up and go to bed with you no matter what you do. Your idea of a pain free day would make a normal person hole up in bed with pain killers and a heat pack. You don’t get that option because shit needs to get done. Kids need to fed. Jobs attended….

And your house will never be clean because you can work or keep house, not both.

Chronic illness is being up for doing things you’re really not up for doing, because otherwise you’d go slowly and silently insane from never stepping foot out your front door. It’s having to walk shorter and easier hiking trails than you want. It’s working your ass off to be stronger whilst knowing that no matter how much work you put in you’ll never make the grade to do the things you want. It’s learning to choose slower, gentler options for leisure in the name of actually being functional for the entire day.

It’s trying to explain to other people that going camping sick is ok, you just have to take it a bit easier, because if you only went camping when you were well you’d never fucking go. It’s cancelling on your friend with the bad immune system, or the one that works with children/the elderly/the sick or the one with young children over and over again because you catch everything that goes round and they can’t afford to be sick.

Chronic illness is feeling like a fucking burden. It’s the house never being cleaned when your partner gets home. It’s asking them to cook for you after they’ve been at work all day because you’re sick again and too tired. It’s never contributing as much, doing as much or giving as much as they do. It’s the little frictions you cause because you are not as capable as you need to be. It’s the frustration of alternately being babied and asked too much of, because that middle ground is hard to find.

It’s trying not to get frustrated with well meaning suggestions and ideas that you’ve tried before. It’s trying to explain that ‘no, exercise isn’t the answer for an already exhausted body’ and that driving 4 hours to sit and crochet by a camp fire is actually worth it. It’s trying to get across the sheer complexity of existing like this to someone who never has without getting angry or treating them like their an idiot, and feeling like it always sounds like excuses.

It’s watching them close off when you try to plan for the future, because ‘what if it never gets better?’

It’s feeling like you’re holding the people you love most back in every possible way.

 

Chronic illness is the frustration of trying to explain the above and more on repeat to every person in your life, especially your loved ones. Day in and day out. It’s exhausting.

These are the pills I take of a morning at the moment, just to try and keep functional and get my immune system coping a little better with everything that’s hitting it. 7 of them are regular daily ones, the 8th is an antibiotic I’m on at the moment for round whatever-I’m-up-to of chest infections this year.

I’m angry, frustrated and tired, and done. I feel like I’m about to lose my job. I feel perpetually like a burden, no matter what I do or how much of it. I feel like I will never be able to properly financially contribute to my household, that I let my husband down and that I’m frequently a bad parent to our kids.

I want to scream and force people to live inside my body for a day, just one 24 hour period, when they tell me I’m fine, or doing too much, or not doing enough, or that it’ll get better. This is what I live with, the good days are most people’s bad days and I lie a lot about how I’m doing so people will treat me like I’m somewhat normal.

 

Today I am squiring around in the chair as a write. Standing hurts, sitting hurts, moving hurts, lying down hurts. So does typing, crochet, and lifting my tea cup, but my hands have been like that for weeks now, and we keep on going…

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2 thoughts on “This is what it feels like…

  1. Diane Zaharis

    *gentle hugs*
    I am fortunate that my chronic illness has improved somewhat that the pain and fatigue aren’t so bad, but I still remember days similar to what your describe and my body recently took great pains to remind me recently that I can’t pretend to be normal. It just doesn’t work.
    You are a worthy, valuable and beautiful creature, because you exist. The universe would not decide to create you for no good reason and despite the pain, frustration, and challenges you bring add something unique, joyous and wonderful to the lives of all who know you. xx

    Like

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