I’ve become quite a solitary creature.
Sometimes solitude morphs into loneliness. But not always. I am quite content by myself. It’s the way I have to spend most of my time, to avoid exertion. Communicating costs energy. I don’t have all that much of the stuff.
I love socialising though. Or at least the version of me who didn’t have M.E. did. But now it can come at such a cost. Unless the circumstances are just so. I’m like ‘Goldilocks’ in so many respects. Even my ‘safest people’ leave me needing recovery time, and that has nothing to do with whether or not I have a good handle on my health. I simply have M.E. Post-exertion consequences are par for the course.
Once in a blue moon I might get out for a meal with a friend or family member. Lunchtimes are best. A real treat. Evenings are trickier. The time it takes my out-of-sorts body to wind down enough for sleep, after so much as a conversation with someone past 7pm…ooof! Chatting over a (decaf) coffee is probably my favourite though. It’s shorter but no less sweet.
But you see, I frankly can’t do it very often at all. Luckily I’m quite content with my lot. The level of gratitude I have, and the amount of excitement I can get when I do have plans to socialise, is really quite a lovely thing.
Yet having to live this way, mostly alone, leads to a very solitary and isolated existence. A few times a week I can have 10/15 minute video calls with my parents. Every month or so I chat with my best friend on the phone. She remains the only person I seem able to do this with. The cognitive processing of audio information remains so hard for my brain now.
People seem keen that I break my own isolation. Adult Social Services had it as their key point of concern when I was under their care (before I lost my PA, and the local government cut their funding).
While there might be nothing quite like human interaction, I remain too unwell to be around people the majority of the time. Until you get M.E. you can have little understanding of the sensory overload that comes with the mere presence of another human being. Even in silence.
Visitors
I am aware though, that this is my husband’s home (and social life) too. If the conditions allow it, he should be able to have guests over. I am never expected to perform Wellness when these occasions arise. But internal ableism and an immense sense of vulnerability (and dare I say embarrassment) can leave me feeling discomfort at being exposed to people when I am not At My Very Best. So if I can, I do sometimes pretend. I, what I call, Max Myself Out energy-wise. I might not feel ‘safe’ enough with everyone to show them my diluted personality, on a day when M.E has dampened my true self with its destructive hold.
Hosting is lovely. We love hosting (love it!) and the novelty of having our own home still hasn’t worn off. We never thought I’d get this! When we have guests, I’m always sort of a guest myself; my husband does the hosting and any cooking. Our visitors know to help themselves to drinks.
But all of our guests have more stamina than I do. There are *still* people who struggle with the whole “invisible illness” thing. Some neglect to see, despite knowing the facts, that I will suffer for their visit. The longer they stay, the more I will suffer. Short stays are great; the fallout is bearable for me, and it’s a consequence I accept and know I must deal with. But some people are worth whatever the physical fallout may be in the aftermath of seeing them.
When having visitors, I’m told I should pop off to rest, mid-visit. Reader, I do sometimes do this but you will understand that there are different levels of rest. The type of rest you get when you know there are guests downstairs is not nearly as good as it needs to be. I will never be comfortable going off to rest either. Great that my guests might say they’d do it if they were in my position, but that point is frankly irrelevant. I will also never be someone who feels/is able to ask people to leave. But there are times when I wish I was!
I do set timers sometimes, to signal my time now needs to be spent resting, but if I’m being honest with you I’d often rather I forgo visitors completely, than have to be so regimented with my attempts to converse in -person.
Small circle
The coronavirus has changed a lot of things in my tiny little life, and reducing my exposure to people has been one of them. When you look at who I do socialise with (my parents and siblings and cousins and best friends), I also end up socialising with everyone they have socialised with. Remember those ‘covid bubbles? I’m still in mine, really. My nephews are at school and nursery. Absolute breeding grounds for germs and I have fallen foul of that enough times to remain careful.
So my circle is small. Very small. But lovely. When I wish I could see people more and socialise as I once did, I have to remind myself that if I was well enough to do that my life would be unrecognisable from the life I have now. I’d have a job and so the frequency of lunches out wouldn’t necessarily increase that much because, well, I’d be at work.
I am lucky that my family all live nearby but it is rare I can get to them for a casual drop in. So rare still, that it’s always cause for celebration. When you visit other people, you can leave when you like or need to!
Sanctuary
So how do I combat the isolation, when this solitude morphs into something like loneliness? WhatsApp. Instagram. Years of curating a safer space for myself online, and finding ‘my people’ within the M.E./chronic illness online community, means that I have friends to can connect with every day that I’m well enough to. Never underestimate the difference a simple emoji landing in your message inbox can make! We’re not always well enough for actual back-and-forth conversations. But a simple ❤️ is all the reminder we need that we’re actually not truly alone.
'M.E. myself and I' by Anna 