This post is part of the A to Z Blogging Challenge.
Your life is great. You’re relatively healthy, fit and active. You have a social life that includes leaving the house, seeing friends, having a drink, staying up late some weekends. Your head is full of idea’s of the things you want to do and what you want to succeed in and what you want to see. Of course there is always something, not many have a wonderful idyllic life with nothing to concern them, finances are tight, job woes, relationship niggles, be that with family, friends, work colleagues, but in general, life ticks along.
Until it doesn’t.
Your health fails. You deal with it. You then realise it’s not temporary. It’s permanent. Your life is affected. Your body is letting you down. The usual activities leave you drained and out of action for days, that’s if you can even do them at all. Having a drink depends on how many pills you needed to take that day and how you feel. Actually going out with friends? How many excuses will they accept? You look fine after all. Your days are short, bedtime needs to be earlier than usual.
Your mind is still full and busy, alert and keen, but your body just won’t play ball anymore.
What do you do then?
It’s easy to sink into a low, a depression, but then you’re losing your mind as well as your body and that’s the one thing you’ve got. Physical disability, be it visible or invisible, can affect anyone at any point with little warning. And as you let it sink in, watch the world and your loved ones continue their lives – because you can’t disable them as well – you have to mentally adjust to your new reality. Because if you don’t, there’s a long life in front of you that holds nothing but a black hole unless you adapt.Embed from Getty Images
I have Ehlers Danlos Syndrome. It’s genetic so I’ve had it from birth, but it hasn’t been picked up until recent years. I’ve had problems, but it’s difficult to diagnose and the problems haven’t been severe. But as I’m getting older, they’re becoming more demanding of me. I’m feeling more restricted by it. I’m having to adjust because of it.
But before adjustment, you have to accept and that is the hardest part. It’s the hardest part for me. In fact I don’t think I’m there. I don’t think I’m fully there because my mind is so active and there are so many things I want to do, but I have restraints around me, my whole make up is a restraint. So I’m making the adjustments at the same time as trying to accept, because if I can make the adjustments work for me, then maybe I can accept the binds the disorder ties around me.
What are these adjustments that will help me move on with a life as a person with an invisible disability?
- I will accept that I need to retire to bed early and make the most of it as reading time and read all those books I want to read. After all, a writer needs to read.
- I will accept I can not go out boozing in pubs that require me to stand up for hours drinking with my mates, but sitting in a restaurant having a laugh with a bottle of wine is a great alternative if I can make it.
- I will say no I can’t stay out/come out and socialise at the risk of losing friends, if my body tells me to, because I will trust that the people left standing when this is all out in the open properly, will be the people I want around me as friends.
- I can make forward plans for events and/or holidays as long as I plan in the recovery time needed afterwards.
- I will get over the fact that I need to take multiple different pills. It’s a fact of my life that keeps me functioning to some level.
- I will accept that I can’t go running, but will start by walking my dog, after all, who doesn’t love a dog walk.
- I will accept the bad days and tears. After all, there’s a lot to accept.