On Tuesday evening I attended a small meet up of local folks who use Twitter. There were 9 of us in all, most meeting each other for the first time.
It was good to be and doing something different and I enjoyed myself very much. I hope to meet up with them (and probably more new people) again in the future.
Deciding whether to attend or not was really difficult. When you have ME it’s not always just a case of deciding if you want to and if you have the time. Desire and time are things I have plenty of – it’s the ability to exert myself without making myself ill that’s the problem.
I was out with Growler for a few hours. First we had a meal out (lovely!) and then onto the pub to meet the others for just under an hour and a half. I felt myself zoning out after an hour and was starting to fade so we left ahead of almost everyone else.
I do worry how people see me in terms of representing an illness that stays hidden at home a lot of the time. I find myself buoyed up with nervous anticipation and enjoying meeting interesting people.
Enthusiasm carries me along well – but I do falter when people ask me direct questions. It takes me notable extra seconds to literally search my memory banks for an answer & consider how/if to mediate a response especially if illness is a factor in the answer. Do they want to hear the details, or broad brushstrokes of how being ill effects how long it takes me to paint a canvas, or do I give a broader answer without highlighting illness? When he asked “is it tough?” did he mean painting in general, or painting with my illness, or my life as a whole?
As I get to know people better I can often guage such things better and so not take as long to do the mental gymnastics. But it does make me sad that they get to know me as the person whose mind goes blank and ummms a lot. They meet the Rachel who isn’t very sharp and don’t know that I’m not as sharp as I used to be because they only know me now.
Then after an hour I am fading and looking blank as even the muscles for my smile are numb. I’m too tired to observe if anyone has sensed a change or just thinks I am always like that (vacant, rude, gormless – I don’t know what they think).
If they do see the change is it possible they recognise it’s the illness? Or is the concept so alien it doesn’t factor? I can (just about) remember being healthy and I took people as they came. Take me at face value without factoring that ME is silently dulling me and I may not come across as the caring intelligent person I really am on the inside.
It leads me to another question – am I denying the part of me that is me with ME? After me dulled with ME in a social situation IS a part of who I am now. If I am vacant and absent and forgetful in public then in a way that is showing a true part of myself.
I start the evening well and bright because I manage my condition as carefully as I can. I manage it so that I am able to be there in the first place. If the exertion and stimulation melt my brain and body into submission then is that not just another aspect of me? I am not just the bright woman I am at rest on my own sofa without physical interaction?
That’s a bitter pill to swallow. I’m pretty sure Growler will say “never make assumptions”. That I notice the dulled down, vacant me much more than anyone else. Maybe.
In one sense I’d like those lovely people I met to understand that a few hours out one evening takes much more than that out of my week.
I curbed a lot of activity the day before and the day of the meet in order to be as well as I could be on the night. I got home and my brain was buzzing with the evenings conversation and characters like electricity pulsing through my mind. It took a good hour for me to calm my mind enough to settle down to sleep. Meanwhile my body was crushingly exhausted. The next morning I woke early still with my mind buzzing having not had enough sleep and feeling hungover from the dose of amitriptyline I had to take late the night before because I was wanting to be able to chat and not be totally spaced out before I even got to the pub.
That day after the meet all I managed to do was use my computer and watch TV. My mind and body were slow. The next day and I feel the same. The plans I had for this week have had to be postponed until I have recovered some more from the outing. I’m not bedridden, but I am slow and ill so need to avoid adding any further malaise to what I already have. I was supposed to have a Growler assisted bath last night but it was too much for me. No bath, no art, no cleaning and a dulled mind with forgetfulness (more than usual), a misbehaving tummy (which was much better until this), being on the cusp of my headache threshold – all for a few hours out one evening.
But I also know that this knowledge could leave those folks feeling awful. Asking someone to do something for an hour that will leave them feeling ill and unable to even wash for a couple of days seems unfair. They end up feeling uncomfortable knowing the cost or saying “if you’re tired/ill you don’t have to come you know” not understanding that I’m always tired/ill.
I want them to understand but I don’t want to burden anyone with something they can do little about. Is it fair to share the suffering? I suppose the one thing that can be offered is understanding. Share in the knowledge, the reality and understand what effect things have on people with ME without feeling the need to find a fix or a cure. Yes to understand, or want to understand.
For me it’s positive to be out and connecting with people about anything except illness. As someone who is mainly housebound and incapacitatedin many ways it’s difficult not to feel like an outsider. Common experience is limited. Even talking to people who live in the same city as me I can’t share much because all I see is my own house and not the outside world. But it does give me a way to connect to that outside world and some of the people in it.
I am happy to celebrate that I am able to go and have one good hour. I can remember a time when that would not have been possible and holding a conversation longer than a few minutes felt impossible, let alone with a bunch of strangers in a noisy pub. So I’m thankful of what I do have but with an eye on what’s still left to gain.