It's been a while since I've done anything with this challenge. It's harder than I thought - sometimes I'm so caught up with feeling ill I don't want to write about it.
Day 12 - Briefly explain to a healthy person what it is like to live with this illness.
Well, I suppose the easiest way to put it across is to help you use your imagination.
Imagine life as it is now is humming along fine. You have a job you may love or hate. It tires you out occasionally but it's usually nothing a couple of early nights and a weekend off can't cure. You have a fairly active social life, love going out with your friends, making trips, having holidays. You consider yourself fairly fit and active and have a zest for life which others may envy.
Then one morning you wake up with a really sore throat. You shrug it off, thinking you might be coming down with a cold. A few months later the sore throat persists, and it has been joined by other strange things. Every time you look up or down you come over so dizzy you have to hold onto something for fear of falling. Soon you start to feel really tired, to the point where you haven't the energy to smile. Getting up in the morning makes you want to cry because you need hours more sleep no matter how early you go to bed. You have a really bad headache almost every day. Things are really starting to weigh you down and you have no idea what the cause of this is.
Soon enough you're dragging yourself home from work with limbs of lead and find by the time you get through your front door that you have no energy to do housework, or cook. Your partner starts to gripe that you're always miserable, and you try to explain what a shitty day you've had or how tired you feel but it doesn't register with them so you end up arguing, which tires you out even more.
You have to give up work, but you have no idea what ails you. You have to explain to a partner who has no idea how you'll cope for money that you just can't work right now. Your first few weeks off work are uncertain ones but you're sure once you've rested you'll be right as rain and looking for work. Except it doesn't work out like that. As time passes by, more things start to go wrong. About six months in from symptoms first appearing, suddenly you can't walk without being in agony. Every attempt to pull your feet off the floor feels like someone is sawing through your hip bone.
You go to see the doctor after the hip issue and he takes you seriously. Thank God! Except he sends you down a 2 year long dead end as he thinks you have a disease you don't actually have. You have chest X rays, ECGs, lung function tests, lights shone in your eyes and more blood taken than would satisfy a vampire. Still they have no idea what to do with you, so eventually the specialist you've been seeing dismisses you don't have the disease the GP thought you had. You KNOW you're desperately unwell but there's no name to call the beast. Do people think you're lazy, skiving, taking the piss? Do your family and loved ones doubt you, despite seeing the cuts, scars and bruises, the evidence of this unknown illness? Even worse, are you going insane? Are you imagining it all? You begin to doubt yourself and it's the loneliest and darkest time you've ever had in your life.
Finally, after things take another turn for the worse you go back and see another GP. Your 4th. By this time you've become an old pro at going to see doctors and have started to list all your symptoms, which go into over 3 A4 pages of bullet points. You are sent back to see the same specialist and are angry, sure it's going to be a disaster again. By the time the appointment comes around that person has left, and you're met by a kindly faced chap who really wants to help. The raft of testing begins again in earnest, and at the end of it, over 5 years since you first became ill, you have your answer. Fibromyalgia and Chronic Fatigue Syndrome. The pain, the dodgy bladder and bowel, the migraines, the dizziness, the crippling fatigue, the mental health issues, the constant cold-like symptoms, the rashes, all of it explained.
Over 1500 days of doubt are over. Now you can concentrate on surviving this thing, which in itself is a full time job.
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That is what it feels like for me. That and so much more.
THIS is why I can't do things last minute, no matter how much I want to. This is something my friends (without chronic illness) struggle to understand sometimes. They tend not to get it when I can't do things on a whim. I have to build up to leaving the house for days in advance. The act of pretending to be normal in public takes so much out of me. I need as much notice as possible to be able to do this. Recently I missed out on spending some time with my old school friends. They were in my town the day after CBT. I was mentally overwhelmed and I woke up the next day (after the walk to and from CBT, which is very hilly and had totally seized up my calves) in so much pain I could barely walk. Should I have gone out, hobbled about and cried a bit from the pain and made everyone miserable before going home early? That would be no fun for anyone, least of all me. Having to justify why I can't do things exhausts and upsets me so much so in many respects it's easier not to have friends. I'm better at online friendships because then I don't let people down.
THIS is why I can't cope with doing more than a couple of things a week. I just don't have the energy - physically or mentally. If I have to leave the house more than a couple of days a week I feel overwhelmed. At the moment I'm doing CBT which is so mentally exhausting that it's my one weekly activity. I don't get to have a social life right now. I have to live in this body, and right now this body is going through a month long extreme fatigue fest.
THIS is why I often feel like I'm under siege.
THIS is why I need so much alone time.
THIS is why the internet is my safe zone, as I can interact with people whilst in pain, whilst exhausted, whilst wearing tea stained pyjamas and no make up.
I hope that has helped explained it a little bit? Gladly things are better overall these days now there are less demands on me than there used to be.
Thanks for reading.
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