The Positive Side to Chronic Illness and Disability

This is a picture my son, Nicky, took of me when he was five.  I love it!!!

Linda taken by Nicky

This picture was taken at 10:56am, on a Saturday.  If I had been working full time at this stage of my life, then maybe this photo would have still been taken.  More likely however, I would have been rushing around, trying to get the housework and shopping done!  This is what we used to do on Saturday mornings when I was working full time when Nicky was young, before Quinn was born and my Ehlers Danlos Syndrome really kicked me down.

Positive to having a disability number one – extra time with kids and I don’t have to debate stay-at-home versus working mum ideals and shit.

There ARE positives to having a disability.  For some people there are many more positives than for others.  And it has to be said – chronic illness and some disabilities suck the fucking joy out of everything they can get their hands on!  But… that doesn’t mean that they always get to have their hands on everything.

Anyone who knows me, knows that I don’t tend to put up with bullshit, regardless of what it is, or who is spreading it.  I let it slide a lot if I just can’t be arsed with one more drama on any given day, but I always notice.  People who continually spread the “disability is a difference, not a deficit” style of inspirational porn (in relation to everyone with a disability, not just referring to their own circumstance), need to come and spend some time with me one day so that I can readjust their perspective.  They seriously piss me off no end.

I have noted however, that not all of this stuck-at-home, in-shocking-chronic-acute-pain-24-fucking-7-pain, and with little help or support (medically or otherwise), is the complete pits.

Some of it actually rocks.

For instance – when I was younger, I was determined to get an education and maintain decent stable employment and grow up to buy a house and a car and only have children when I had enough saved to provide for their private education.

What I really wanted to do was be a writer and spend my days gazing out of windows or walking through rainforests for inspiration and contemplation.

Having a disability means I can have that time to write.  Of course, as much of my time is spent swearing at one dislocated joint or another, or just plain sleeping, I still do not have the oodles of time I once wished for.  I do however, have much more time than I would have if I had been perfectly healthy and working some job that would have only at best been my “second choice”.

I get parts of the dream.  Which is more than most people get.  Is the cost worth it?  Some days no…  but some days yes 🙂

Another positive is that I get to spend more time with my kids.  I don’t get to go to school events, and I rarely get to take them to the park, or any of those other childhood things that mothers who stay at home get to do with their kids.  I do get to generally spend more time with them than a working mother though.  I do get time to research their own issues, and ensure that the house is running smoothly.  If a bill isn’t paid, it is usually because we can’t afford it, rather than because the bill found it’s way through some left over milk on the table before landing under the fridge and growing strange fluff.

I am going on a scrapbooking retreat this weekend.  Yes, my family may need a support worker while I am away, and it sucks that they have that need – but it means that the boys will be going out and having fun, and it means that I can leave knowing that my husband has some help on hand while he is injured – bonus!  Yes, I may need a support worker to go with me, and it sucks that I have that need – but I get along really well with her, so going with her also means that I have company for the weekend – bonus!

It sucks that I have a need to have a fully accessible bathroom – but we now have a brand new bathroom which looks pretty schmick – bonus!

It sucks that I need a wheelchair – but we can sling the nappy bag on the back of it so no one has to carry it – bonus!

Meeting people in the disability sector who are awesome (even if only “meeting” them online) – bonus!

Learning that we don’t have as many material item needs as we once thought we did – bonus!

Getting back to basics to the point where purchasing a special candle is a huge deal that gets me flapping – bonus!

Developing who I am as a person – through all the research I do, and all the advocating I do, and the things I learn from others, both conversationally and through their written word – bonus!

Chronic illness is never all light and fluffy, nor are many disabilities.  I don’t care what anyone says – it is harder to have a disability than it is not to.  Chronic illness can be completely debilitating.  I have spent days on the lounge watching television and it drives my batty!

But on those days, I also get to watch my favourite television shows – bonus!

Having a chronic illness or disability can suck giant King Kong balls – but sometimes, you need to find even the smallest thing to hold on to in order to get through another day.

 

Note: Finding the bonus for some people may be impossible, and if you are one of these people, then I am truly sorry for your circumstances, and I wish you to know that I recognise this post isn’t for, or about, everyone.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Disability, Ehlers Danlos Syndrome, Personal

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Pissed off since 1995. Mad as a hatter since way before that.

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Photo's of our Aspie House life!
You know it's cold when... you lose your chair two seconds after your bum leaves it... Maxie!  I'm trying to work here!!! Lilly was looking at the oven intently as it cooked the boys dinner...
BJ - Lilly, it's an oven, not a television...
Lilly - You watch what you want to watch, I'll watch what I want to watch!
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