The Red Queen's race
I am a person with a disability. My disability makes my life very hard. I often have to see doctors. I also have lots of other medical treatments. Just getting out the door can be difficult. Sometimes I find it hard to cope. I sometimes feel like I have done nothing at the end of a day. I feel like I have had to run very fast but haven’t travelled anywhere.
Posted by: Jennifer Vesperman, on 19/10/10
My race contains many hurdles
’Well, in our country,’ said Alice, still panting a little, ‘you'd generally get to somewhere else - if you run very fast for a long time, as we've been doing.’
’A slow sort of country!’ said the Queen. ‘Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!’
A person with a disability
I'm a person with a disability. A disabled person. A handicapped person. A malingerer. A lazy-ass.
But I don't look handicapped. So I get the ugly looks when parked in accessible parking spaces. I also get them when using a mobility scooter or taking the priority seating on public transport.
I find the question: “what do you do for a living?” difficult to answer. What do I do? I run as fast as I can.
Dictated by problems
My life is dictated by my problems. My disability dictates when I wake up. It dictates when I sleep. It also affects when I can write and when I can't. I have frequent medical appointments, plus things like:
- Therapeutic art and music
- Meditation and stress management
- Painful trigger point massages
- Covering my skin in ointments and creams.
It can also take a lot of time to find clothes I can wear. I need clothes that don’t rub me raw or drive me mad with itching. There is also housework, if I can manage it. By the time I've done all of that, I'm out of cope.
What is cope?
What is cope? Cope is a concept we use in our household. It's a combination of how much you can do: physically, emotionally and intellectually.
Cope can be restored with sleep, rest, and stress-reduction techniques. Cope is spent on tasks that take effort. Cleaning the cat’s litter tray, takes both physical and emotional cope. Doing taxes takes emotional and mental cope. Assembling flat-pack furniture takes all three types!
Sometimes its too difficult
It seems most people don't have to think much about coping with little things like getting out of bed, brushing hair, or cleaning the litter tray. I do. Some days, it's too difficult to brush my hair. I either get my family to do it for me. Or I might spend the day with tangled hair. It's sometimes just too painful, and too physically difficult.
A day with trigger point massage spends a lot of cope in pain. Pain eats all types of cope.
A huge emotional load
Appointments eat a lot of cope! I have to be ready by a specific time, which is stressful in itself. I also have to be awake in time. I have to dress and brush my hair, both of which take a large part of my physical cope for the day. I have to go outside and face the outside world. Given my anxieties, that's a huge emotional load. Travelling is also physically painful. And dealing with people can take both mental and emotional cope. Then there is travelling home. And finally, taking off my “outside” clothes and putting on my more comfortable “home” clothes. That's usually most of a day's worth of cope.
On the days when I am sicker than normal, I have much less cope. On the days when I'm healthier than normal, I have more. But even then, I try to keep some spare cope. My body needs some available to heal. If I don't leave any spare, I get sicker and sicker.
I've just survived
By the end of a day, I've done everything I can manage. Some days I have enough cope to write articles, do a bit of gardening, or meet friends. But sometimes I feel like I have achieved nothing. I've just survived a day. I'm no better. My life isn't better. I've made nothing, helped no-one, made nobody's life brighter or happier. Solved no-one's problems. Made my house no better.
All I've done is run as fast as I can, to stay exactly where I am. And people think I'm lazy. I'll trade them. Their life for mine.
Support is available for anyone who may be distressed.
Lifeline - 24 hour telephone counselling - 131 114
Kids Helpline - under 18 years of age - 1800 551 800
Just Ask - rural mental health information - 1300 131 114
Men’s Line Australia - 24 hour telephone counselling - 1300 789 978
Salvation Army - 24 hour telephone counselling - 1300 363 622
ReachOut! - website for young people (opens new window)
SANE Helpline - mental illness information, support and referral - 1800 187 263
beyondblue Information Line - information about depression, anxiety and related substance abuse disorders, treatments and help - 1300 224 636
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