This is one of those straight-out-of-the-head posts that will probably end up as a rant. But I’m really fucking frustrated today and I need to get it all out.
Invisible illness is exactly that – invisible. Generally speaking I’m talking about Chronic illnesses here such as my own(ankylosing spondylitis) and things like Crohns, Fibromyalgia, ME, etc.
If I broke my leg, it would bloody hurt. I’d go to the hospital, have an x-ray and end up in a cast for however many weeks. I’d walk into a room and people would instantly know the reason why I’m not driving/working/break dancing.
Invisible illness is shit in that respect, and is so hard to make anyone understand – I’m talking family, friends, colleagues – anyone.
I’ve been in ‘flare’ for four (long) weeks now. Flare basically means that my AS gets worse for a period of time and is really difficult to manage. In my case I’m permanently exhausted, I have constant pain in my back and legs and I feel really low because of the physical(yet invisible) symptoms.
This morning I opened my eyes when my alarm went off, and cried. A lot. I felt even more exhausted than when I’d gone to sleep and the pain hadn’t eased in the slightest. It’s soul destroying, especially when it’s been every morning for a month now.
I had to get the boy ready and be at work for 7.30am. I really didn’t want to go. I wanted to hide in bed, and not face the world.
But the bills don’t pay themselves and the three year old monster (unfortunately) can’t feed and clothe himself.
Believe me – there are mornings I just can’t go anywhere, but at the moment it’s every day and I have to be able to work and parent. I have to work, we need the money. And despite the stress I like working and interacting with actual real people. And not watching Paw Patrol.
So I wobbled into work with bodged hair and makeup and did my thing. Happy chatter and big smiles all round.
But inside I was struggling, with a combination of pain and exhaustion. Days like today I find myself eating my body weight in carbs to try and stay awake and functional.
I even found some glucose tablets today and popped one in the vain hope I would get some energy even just for ten minutes.
And the worst part is, it’s invisible. Apart from the fact I look tired and pale as fuck there is no indication to anyone as to how bad I really feel.
Sometimes I wish I could break a limb just so I could sleep for a month or two. It’s getting pretty desperate at the moment, I’m reaching my limits where I’ve been feeling poorly every day for a month.
It’s pretty hard to describe – it’s like tiredness to the point of being unable to stand up. Feeling like you could keel over at any moment. Your skin and body becomes super sensitive; a gentle tap on the leg can feel like you’ve been stabbed. The limb and back pain is like a really fucking irritating painful ache that is always there. And every time you breathe, move or try to anything you feel more pain.
I’ve been called lazy many times. That hurts, man. Anyone who knows me will know that I can walk ten or more miles, and I can buzz around running errands all day with no ill effect.
So to go from being incredibly active(for a fat lass) to not being able to walk up a flight of stairs is soul destroying.
It really gets you, every moment of every day. You know it will pass but you don’t know when.
There are painkillers and drugs of course that do indeed help. But not only do they come with often unpleasant side effects, they don’t last very long – my current ones will kick in after an hour and will last for three, and I can only take them twice a day which makes the day time really bloody miserable.
Chronic illness and mental illness are two things that affect me every single day and they are invisible – I know they are there yet I tire of telling the world why I feel poorly, why I’m a blow out and why I’m miserable as fuck(that may just be me to be honest).
Yesterday I had to have a power nap before I could attempt cooking dinner or anything after nine hours at work, and even then it only provides me with enough energy to concoct a dinner fresh from the freezer and I’m ruined for the rest of the day.
I know what you may think – it’s only the evening, it’s hardly ‘the rest of the day’ but I love my evenings. It’s my time to catch up with the hubs, do some chores and catch up on shit TV. I don’t want to be asleep or lying on the sofa like an overcooked vegetable.
Rants aside I have a doctors appointment this week, I still hope that there may be some sort of miracle cure and I’ll be running marathons by this time next week.
I can hope, right…