Ehlers Danlos Syndrome,  Relationships

Looking for trouble

Most of the adjusting to living life with an acquired impairment is down to adaptation. This is achieved in a few simple steps:

  • Identify the issue
  • Ascertain the cause
  • Think about how this could be avoided or at least mitigated
  • Implement the adaptation

With a condition such as mine, almost all of the ways I adapt things to decrease my pain and make my life easier are physical – but not all of them.

Cope for the best

Coping mechanisms are strategies that people use to help manage pain, both mental and physical. There are probably as many different coping mechanisms are there are people in the world. What works to help one person doesn’t not necessarily help someone else; the effectiveness of ways of coping are unique to an individual.

One of the biggest difficulties is that coping mechanisms can be unhealthy and destructive. These types often work through distracting the person from the issue they face, with the results usually being short-lived and unsustainable.

I went through this process, not for the first time, the other day. While it’s not very nice for me to share, I very rarely share anything even remotely mental health related but I’m making an exception for World Mental Health day. Although to be honest, this whole blog is an exception with me actually talking about things honestly!

Helping, but not helpful

Your mind can come up with the most fantastic ideas, and not all of them are good. Necessity is the mother of invention, but in my experience exhaustion and being heavily medicated like to give innovative solutions a bit of a bash themselves. When you feel like you are backed into a corner with no way out, it’s amazing how creative you can be.

So it’s stupid o’clock in the morning, again, and I am awake – I am in too much pain to go to sleep despite the medication I have taken to try to help. Having been at work earlier in the day, and then out to see a friend, I am particularly tired (read: I left the house, ergo I am exhausted). As the morning draws on I’m getting increasingly frustrated and upset; I try to do something practical – how can I adapt to stop this from happening in the future?

  • Identify the issue – All I want in the world is to switch off; to escape the pain and be somewhere else other than in my own body. I cannot sleep.
  • Ascertain the cause – I’ve over done it today. Going to work AND seeing a friend was too much to expect of myself.
  • How this could be avoided or at least mitigated…

Well, what won’t work?

I can’t give up work. Even though I can’t walk 20 metres safely and reliably, the DWP has deemed that I am only entitled to the lower mobility rate of disability benefit. I can’t afford not to work. My job is also a source of a sense of self-worth which has been rapidly depleting since my illness took hold.

So… See friends on your day off? A good idea on the face of it, but this is counterproductive – my work schedule is work a day, rest a day. If I spend a rest day doing things I’ll start going backwards again pretty fast. Weekends are the best time to see people, but it’s so hard to fit all my friends and family in.

I can’t see my family any less – I already feel really bad about how little I see my gran, and there are other family members I only really see at weddings and funerals these days. It’s not the way I want things to be but now that it’s so much harder to get around there’s nothing I can do to change it.

I don’t want to see my friends any less. They are the people I have chosen to have in my life, the people whose company I probably enjoy the most (no offence famalam, but you’re stuck with me and vice versa!). I see my friends less and less, but this is really the only area where I feel there’s any wiggle room. I can’t end relationships with my family, but my friends have other friends – friends who are probably more fun, less of a nuisance and would out do me in most good- friend related qualities. Except I like my friends and I don’t have the slightest idea how to sit someone down and have this conversation with them…

Worse still, I can imagine my well-meaning friends own solutions to the problem. “We’ll come to your place”, “We don’t mind if you’re in your PJs, we just want to spend time with you”, “We’ll just go out for an hour”, “I can play taxi driver”. All kind, loving ideas that I would have to shoot down for various reasons… No. I can’t have that conversation with my friends; it will just make them determined to put in more effort. What else can I do?

Then my light-bulb moment happens.

But it’s not your normal, helpful bright bayonet-cap bulb that sheds light on a sensible solution to your problem. It’s an odd, luminous, sickly-green neon tube, twisted and contorted into knots, that just about gives enough light to see by, if you squint hard enough.

It shines upon a ridiculous idea… So ridiculous it might just work!

Pick a fight. Make them hate you. Be a total dick so that they don’t want to make any effort, so that they don’t want to spend any time with you. Make them realise that they will better off without you, which is true anyway. It won’t be easy, but if you get it right it will be final – no lingering awkward conversations about “what if we” or “have you tried”, just BOOM. Friendship over.

Set the free. If you love someone enough, you’ll let them go – isn’t that what they say? Cruel to be kind? As the thoughts continue to race round in my head they sound more and more rational. Why didn’t I think of this before? My imagination begins to run wild, thinking about what I might say to whom…

And at some point, I fall asleep.

The next day comes, and an awful lot of it passes before I wake up. When I do, I am ashamed. Daylight shines truth onto the horrible thoughts of the night before, that were somehow disguised and softened by the eerie half-light of my early morning madness. But when you feel trapped and that there is no way out, when your only desire is to escape and never be in the situation you’ve found yourself ever again, your mind will try to find ways to cope. If you’re lucky, when you need to you’ll find the strength to avoid them, and not avoid your friends.

Leave a Reply

Your email address will not be published. Required fields are marked *