There’s so many types of exhaustion. No one tells you that you can experience more than one at a time either.
I am exhausted.
That is the conclusion that I have come to every day for more than three years. See, I did it again. I say that it’s been three years since I relapsed, three years at the end of January. But actually it’s not. Because this year isn’t 17. Not anymore. It’s 18. 4 + 4 = 18.
I don’t quite know where that time has gone. I suspect that I was unconscious for at least a part of it.
But that is not the exhaustion that is killing me, eating away and torturing me. It’s mental. It’s stress. And it’s got too much. It’s been too much for too long.
Last year, this year, last year was so slowly painful. One disaster after another.
You think that I’m melodramatic? Well, I wouldn’t have the energy to be, trust me.
I faithfully get up every day (let’s not be too specific about a time frame, alright?) and I try to deal with whatever life is currently throwing at me, us. The problem is that I don’t have the energy or health or even the time to deal with all the things that need my attention day by day. Not being able to cope with daily life is inherently a consequence of chronic ill health and is frustrating, demoralising even, at the best times. I start most of my correspondence with ‘I’m sorry that I haven’t been able to get back to you sooner’. Classy.
And folk really don’t understand that.
But that’s not causing the devastating level of exhaustion. No, not guilt at all. It’s stress. It’s living with worry and fear and doubt and uncertainty and responsibility day in day out.
Can you live without income for five months? Can you survive if your income gets reduced? Again. Oh, and again. Can you cope with supporting your loved one with serious health issues? Can you cope with your gas engineer going AWOL? Only after you’ve been told that you’ve probably got a gas leak. Can you cope with your drains blocking? Can you cope with your friend’s serious health issues? Can you cope with your neighbours screaming and slamming doors all hours of the night? Can you cope if they take all your support away?
After a while, you just kind of go numb. Maybe that’s exhaustion.
I need sleep. I need rest. My immune system has had enough and I’ve been fighting a lurgi for over three weeks now. My body has had enough.
And I haven’t even recovered from the last relapse yet!
(If I’m horrifically honest then that it is becoming more and more unlikely as even more time continues).
I live with fear and stress, with almost a sense of constantly looking over my shoulder. Hypervigilance? Well, it’s symptomatic of pretty much every condition that I have in my alphabet soup, both physical and mental. But it seems a fairly reasonable response to life too. You learn to expect things to go wrong. You learn because it happens so often. Can you fault a body for that?
But it’s more than even that. It’s that feeling of always expecting judgement. Usually of the condemning nature. It’s part of life with chronic health condition, actually. Fairly or unfairly. So much has to be put into the hands of others, higher powers even. All of which must undergo what is often called ‘assessment’. This is to gauge, to judge your worthiness. Then it often feels that being ill invites the ‘assessment’, the critique and judgement, of perfect strangers from any walk of life. If I go out, if I do this, what will others assume? And what will be the consequences of their assumptions?
Maybe that’s a kind of guilt thing. Still. After all.
It’s exhausting though.
I can’t cope.
And ironically I can neither afford to or not to.
Ironically? Maybe paradoxically?
I want a holiday.
I want fresh air.
I want a change of scene.
I want a break.
We both need it.
We haven’t been on a real holiday for eight years. The last one didn’t exactly go to plan either. It took us years to recover, particularly psychologically, and in some ways there’s still traces of it in every day of our lives, the effects, the consequences.
But we’re both stronger psychologically now than then, although we didn’t know that we weren’t then. If that makes any sense? We’re ready to try again.
We need respite. If one of us had clear medical needs, we could somehow apply for respite and one of us would get to go into hospital or a hospice whilst the other took a break from those physical care duties. I’m sure that it would be onerous and somewhat unlikely to happen. But there is theoretically a process for that to happen.
That’s not our situation. Ours, naturally, is more complicated. Of course.
We both care and support for each other. Physically and mentally. But not in that medical sense. We don’t qualify. And being incarcerated wouldn’t really be the respite that we need.
If we were children, strangely, we’d be perceived to have some sort of a right to a holiday. The right to see the sea, the right to fresh air in the countryside. I understand that, of course. But doesn’t everyone?
Why is a holiday perceived to be such a luxury?
I mean, a weekend break doesn’t incur quite so much judgement. Presumably because it’s shorter, more spur of the moment, cheaper and, let’s face it, a lot more convenient for everyone. If you think about it.
You can pretend a weekend break never existed. And so can everyone else.
When your life is in the hands of others, you have to account for every penny you spend and how and why. Modern life makes us judgemental; social media invites judgemental voyeurism and inspection. It’s a culture thing. Something to do with vultures, maybe?!
Even if we could scrape together the pennies (envelope juggling is one of my regularly practiced life skills), I fear that a holiday wouldn’t be such a break after all.
The fear, the stress, the judgement, the having to account, the being held to account… That’s what we need the break from.