I decree today that life
Is simply taking and not giving
England is mine – it owes me a living
But ask me why, and I’ll spit in your eye
Oh, ask me why, and I’ll spit in your eye
But we cannot cling to the old dreams anymore
No, we cannot cling to those dreams
Does the body rule the mind
Or does the mind rule the body ?
I don´t know….
Under the iron bridge we kissed
And although I ended up with sore lips
It just wasn’t like the old days anymore
No, it wasn’t like those days
Am I still ill ?
Am I still ill ?
- Still Ill, The Smiths
Here’s how it works.
You are born two weeks before Christmas, in an infirmary they knocked down a few years ago. The last of four children (the ‘mistake’), you’re born pretty healthy. A normal weight, lots of bright orange hair and a loud cry. A very loud cry, in fact. A cry which didn’t stop for weeks on end, stretching into months.
The doctors work out you have an allergy to dairy products. Not an intolerance; a life-threatening allergy. You are taken off baby milk and put on soya, and the crying stops. Then comes eczema, covering your whole body from head to toe. Years of bandages and E45 cream and scratching.
The illness kept on coming.
Living with chronic illness is one thing. Living with an unexplained chronic illness is something else entirely. Although I have a diagnosis of fibromyalgia, I’m not 100% certain I still accept that fibro is causing all my symptoms. I’m not convinced I actually have fibro. When I was diagnosed, it was a relief because I finally had an explanation for all the fatigue and strange pains, but recent worsening of some symptoms and arrivals of new ones have made me wonder if perhaps I’m experiencing something else. Something which could maybe be treated, or which at least has a definite cause.
Fibromyalgia explains the muscle pains and twinges, but not the joint aches and trapped nerves. It doesn’t explain loss of bladder function or an entirely numb right leg. What if there’s a medical reason for all this, something which could explain the constant kidney and water infections? The cervical infections? The cold-sores? If there’s a name for it, I want to know it. I want to grab that name and fight whatever the hell this is, armed with knowledge about it.
But, for now, I simply don’t know what’s happening anymore. I can’t fight an unknown enemy.
My daily routine during the week goes like this:
Wake up between 11am and 3pm, usually by being shouted at by my mother to “get up and sort my life out”
Light a cigarette or spliff, depending on availability of either. My mother brings me a cup of tea with loads of sugar; I don’t have the heart to keep telling her I don’t take sugar now.
On good day, I get dressed and washed. Bad day; it’s pyjamas and unbrushed teeth.
Choice of distractions mostly include: reading, wasting time in the deepest recesses of the internet, Bejewelled, The Sims, or a film. On a good day that list will also include knitting. On a bad day, it’s pretty much narrowed down to lying in bed with my laptop, surrounded by empty cans of Pepsi used for ashtrays and empty tea cups.
I never wanted to go down the good day/bad day route. I (perhaps foolhardily) believed that giving in to the concept of having healthy and unwell days was akin to becoming a slave to the illness, and I refused to go there. I never wanted to be the bed-bound invalid which I inevitably became.
Sometimes, it seems like a pointless existence.
I envy those with positive attitudes. Jealousy is an ugly emotion and I’ve never felt comfortable around it, but I truly do feel a touch of the green-eyed monster when I hear of people coping. The concept seems so alien. It’s not that I’ve never tried to cope – I tried my hardest for years – but I feel battered down and jaded by so many hospitals and tests, and I never did learn how to deal with it all. I’ve never been very good at coping; with anything. It’s my biggest downfall.
Two strong parts of my personality have a particular problem with my symptoms: my hatred of sympathy and pity, and my hatred of being accused of lying. Both affect me deeply, and you can’t avoid either when you’re always ill. Sympathy comes in waves, crashing on me and exiting again; utterly meaningless. There’s a difference between genuine concern (which I appreciate) and the all-too-convenient “oh, I hope you feel better soon” so many people mutter in my direction, before hastily cutting off contact with me. I won’t feel better soon, that’s why it’s a chronic illness.
Then there are the disbelievers. The ones who look at me slyly and say, “hmm, you had a cold last month”. The ones who turn their eyes to the heavens when I cough or sneeze. The doctors who look at me like I’m a particularly grotesque lump of dog poo on their shoe when I say the medication isn’t working or that I’ve been vomiting or been unable to move my neck for days. The keyboard warriors on forums who accuse me outright of fiddling benefits (it’s happened). My mother’s disparaging remarks about my “laziness”.
Along with this comes the fear of losing help from the government. In my emotionally confident times, I can convince myself that it wouldn’t be the end of the world, but the reality is it would be. I have a prescription pre-payment card, I have over-the-counter medications to buy, taxis for transport because I’m in no way able to deal with public transport right now, appointment after appointment.. how would I pay for these things? I’d have to get a job.
You possibly have a job. Most people still do, despite the news stories claiming that everybody is cheating the system. The UK would have you believe we’re all workshy spongers, buying 50″ LCD televisions to watch Jeremy Kyle on with our free money, going on holiday somewhere tacky and sitting around being lazy all day. The media paints an unrealistic picture of life on government handouts, making out that it’s a utopia.
The reality isn’t quite so sweet.
Sit still long enough and you’ll atrophy, emotionally and physically. You’ll lose all will to motivate yourself out of the situation and eventually you will accept nothing will ever change. You feel like the lowest of the low – a deplored member of a so-called broken society – and life becomes a fog of bad horror movies, cheap books, sleeping to pass the time and a constant sickening feeling for something more. Something other than a pseudo-existence.
Something else I envy (I really have to deal with the jealousy problem) is people who go to work every day and who are able to do their job. I feel like I’ve been cheated somehow; that a vital part of being human has been taken away from me. Being a valued member of society doesn’t involve being stuck in bed for half the week or rearranging your music collection to waste a few hours.
You see; I’m ashamed. I can’t shake the feeling of inadequecy that being long-term unemployed brings. I feel like I’m somehow letting the side down and wasting my life away while other people do their bit. It’s not a nice feeling – sometimes it pulls me apart – and as much as I try, I can’t see the positive in sitting at home all day while life carries on around me.
I will never forgive myself for leaving the bookshop. I had a job; even if it was voluntary. I know things weren’t working out and life with J was destroying me, but I should have held on. I had a purpose, and something to tell people when they asked what I did. For the only time in my life, I felt like I was contributing to normal society. It’s no small thing to suddenly find a niche were before there was only dull, empty space, and I miss those times dearly.
In my lifetime, I have amassed these diagnoses:
Gluten, wheat, citrus and sugar intolerance
Irritable bowel syndrome
Polycystic ovary syndrome
Recurring pelvic inflammatory disease
Schizophrenia (no longer diagnosed)
Borderline personality disorder
Asperger’s syndrome (no longer diagnosed, and a story for another time)
Major anxiety disorder
Recurring urine infections
And I’ve been tested for:
A pituitary gland tumour
I suppose we can now say brain tumour, after my waste of time neurologist appointment.
Each of these diagnoses and tests have required appointments; most more than one. I have seen hundreds of doctors and waiting rooms in my lifetime. I know my local hospital inside-out. I’ve had things taken out of my body, tissue lasered away, probes stuck up me, ultrasounds and MRIs scan me. I’ve had X-Rays, a CAT scan, a EEG. I’ve had lights shone in my eyes, I’ve pissed in a thousand tiny jars, I’ve had more blood tests than I can remember. I’ve spent hours in A&E. My heart has stopped in a hospital bay. I’ve been ‘hhhmmm’d’ at more than I care to mention. I’ve been patronised and dismissed, only to be back in hospital days later. I know how it feels to ride in an ambulance in gas and air. I know how gloomy the high-dependency unit is.
My life has revolved around doctors, specialists and hospitals. My paper medical notes are huge and tattered from being sent around the Northwest on a regular basis.
And yet, very few answers have been forthcoming. There was a time when I believed that one day the tests would stop, but I confess to losing that faith now. It’s a hellish never-ending cycle, and yet some people – the disbelivers – think that this is a desirable life. That I would rather live like this than work.
They’re very wrong.
I didn’t ask for this.