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The Funny Guide to...

Living with a Chronic Disease

By Sarah Louise CrozierPublished 3 years ago 9 min read

Errr, no, this isn’t a funny guide to sex, sorry to disappoint you…not saying that’s not a good idea for an article, I just don’t think I’m qualified enough to write it! Not as much as I’d like to be anyway!

No, this is a ‘funny’ guide to being physically f**ked…again, perhaps not putting it quite right, what I mean is, when you’ve been diagnosed with a chronic illness that otherwise makes you ‘appear’ OK to the people around you, but inside, you’re falling apart like a Chinese motorcycle (I saw a chance to use a Simpsons quote there and I took it!)

Let me explain a bit more…from January 2017, I noticed something was ‘off’ within me…no, it was nothing to do with body odor. I began to think that things just weren’t working right, things never really have worked right with me to be fully honest with you, but this felt like the next level, I felt like I’d somehow levelled up in the world of being a low functioning citizen with a brain made sorely of jello and fluffy clouds.

This felt ‘serious’ *cue dramatic music.*

To be fair, without being morbid, by this point in my life, the past couple of years hadn’t exactly been easy anyway, the sudden loss of my mother, the sudden loss of my cat child and a very intense and nasty job situation, had all left me feeling pooped out…so I left it alone thinking it was all a physical to reaction to trauma and stress...but now, it was getting worse and I couldn't ignore it any longer.

I was having trouble getting out of bed, even if I’d slept for 10 hours, I still wouldn’t be able to move, I was dizzy, nauseous and ‘foggy headed.’ I knew I’d gained the nickname of ‘Dory’ for the reason of always being forgetful, so I knew I wasn’t always the sharpest spanner in the toolbox where my memory was concerned, but to find my door keys in the fridge after spending the best part of an hour looking for them, was an amazing experience that I’ll never forget…or may do, as the evidence suggests.

Even a nice day out with my family or friends was becoming a scary, anxiety inducing marathon, and it was getting to the point where if I knew if I had to ‘do anything’, and in this case ‘do anything’ meant anything that involved putting a bra on and leaving the house, then I knew that I’d have to leave the next day or two that followed free for lying in bed and thinking about how fucked I was, because the burst of being a normal, functioning human being for a day (or even a few hours) would wipe me out for the next few days. It was genuinely terrible, and as mentioned, I’d never been exactly Linford Christie, quite the opposite, but it was getting silly now…and very worrying.

Anyway, long story short, after being used and abused by the doctors, like some poor test tube bunny, they came to the conclusion that nothing was wrong with me…hallelujah! And then, after that joyous occasion of me thinking I was even more of a looney than I already thought and of course, falling apart some more physically, they eventually came to the conclusion that I had Chronic Fatigue Syndrome (or Chronically F**ked syndrome) as I like to call it.

So this past year I’ve just been kind of getting to grips with it all and looking after myself as much as possible. It’s not been easy and still isn't... and to be honest, from January this year, my life has been about as fun as a celebration in a crematorium. January was when things really started to take a hold of me and I am not ashamed to say that I have really struggled all year to try and not be a complete and utter devoid and burden on society.

All my life I’ve prided myself and saw myself lucky to have inherited my Mum’s Bull strength and determination, even when bits of you are falling off. My Mum was never in the best of health and often had bits of her falling off and about the place, but she had a very strong mind and heaps of inner strength, even when everything around her was going spectacularly wrong. Thinking back now, I think a lot of it came from her acceptance that life is absolutely shit…all the time, but, at the same time, you shouldn’t let that stop you from having some hope that it might not be shit some of the time, it might be good for a little bit, even if it goes back to shit status afterwards. It was like a blind faith that she always had, one which I always admired and which I now realize, have inherited.

So, this is why I am writing this blog, I wanted to let anyone else know who is struggling with something chronic, painful or ‘invisible’, that it doesn’t have to make you invisible (although sometimes, you may wish it did.) You can be okay, you can have fun, you can function and something good can come of all the wasted days spent like a vast slug on your sofa…and yes, even the days when you find your keys in the freezer.

You just have to be gentle with yourself and not call yourself a f**ktard too often… I’ve put together a few little pointers below in the hopes that it will guide you and give you some hope and advice on the days when you feel like your body has been put in a blender… and when other people’s attitude towards you and your illness makes you want to commit mass homicide…(if you had the energy, which of course, you haven’t…)

So, here are my TOP 5 tips to getting by with this f**kery…

1. Don’t let other people’s sodding behaviour get you down… you’ll get the whole ‘you don’t look ill’ stuck record speech from people… ‘well, you don’t look like an ignorant dick, but here we are… actually...no, scratch that, you do!’

Don’t let other people stop you from taking appropriate steps to self care… ‘No Stephanie, I’m sorry you’re upset, but I don’t want to come to your boyfriend’s cousin’s partner’s baby shower… I feel like someone has stuck a broom stick up my arse and waved me around the room on the end of it…it also hurts to move my eyeballs, but thanks for the offer all the same… '

If it means you get considered a ‘flake’ (not the chocolate kind), then so be it, the right ones will understand, honest. Priorities are everything now.

2. Learn to say NO! If ever there ever was a time in your life that the word ‘NO’ should become your best friend, then being diagnosed with a chronic illness is one of them (see above!) In fact, NO will probably be your only friend, so you might as well get used to it.

3. It IS okay to laze about in your underwear and watch trashy, true life murder shit tips on Netflix, (unless of course, you live with other people who may not appreciate seeing you in just your pants…or you live in some kind of glass house…even so…fuck it!) As for trashy murder Netflix shite…I recommend ‘Britain’s Darkest Taboos’, utter garbage, but strangely addictive. If someone can believe that ‘Garson’ from Indonesia really, really loves you but also needs your life savings and a very big axe, to save his father from some war torn county, who also has no legs or arms… and not cotton on that he may just be after bashing your noggin in and living it up on the Canary Islands with your hard earned dough, then it kind of makes you feel better about your freezer keys...

4. Ban the bra! Seriously… bra’s that I’d worn comfortably for years were suddenly excruciatingly uncomfortable & to be honest, be prepared for a lot of things in your daily life that were previously okay, comfortable or enjoyable, to now suddenly turn against you....shoes, food, medication, toiletries, skincare products, even that nasty little under-stated tit..the sock elastic…things will just suddenly become uncomfortable, sore and un-doable…including yourself.

5. & Ultimately, all you really can do if you find yourself in this situation is take your time, be selfish and be gentle with yourself, because you really won’t have much choice in the matter in the end, even if you are pig headed and stubborn. There will be days where you will cry for hours because you dropped your glasses in the toilet for the fifth morning in a row, you will have days where you’re just zoned out mentally and ask questions like ‘what do cat’s think when you tell them you love them? Do they know or what?’ to the bemused people backing away from you.You will get ignorant people making you wish you had the energy to kick them in the bollocks, in the hopes that it may knock their innate insensitivity to those around them out of their testicles.

At the end of the day, you just need to concentrate on you, more than ever, it’s a great excuse to be selfish and some good does come out of it all, I promise…you find out who your friends are for instance, it makes you question your career choices and helps you gain a different perspective on life. It forces you to go about life in a different way and sometimes that flares up new passions and goals that you never even thought about before…it may even give you some time to finish that novel you’re writing, even if you are writing it in your pants with toast crumbs on your boobs…this isn’t how I’m writing this by the way, it’s just an example…honest.... funnily enough, I’m often fully clothed these days…I guess you could call it that Bull strength…even if it is only does manifest into a consistent daily desire, to make sure I have pants on. Little bouts of motivation like that are something to hold dear, when you’re chronically f**ked…the somethings are BIG things.

Now, be healthy, be safe and be well… and until next time…. I’m off to go and check the fridge for any miscellaneous items that shouldn’t be there… and put some pants on…



About the Creator

Sarah Louise Crozier

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