One of THOSE days...

There are times when, despite my reluctance, and a growing inability to manage it, I have to not only leave my home, but travel into town, or to run errands, or go shopping. Generally I do everything that I have to online to save me the stress and upset: but that isn’t always possible:  besides, it is all too easy for me to become a reclusive hermit, and while it causes all kinds of problems for me, physically and mentally. sometimes I have to force myself to do things that I am not only reluctant, but afraid to do, simply because I am equally terrified of disappearing into the miasma of fear, pain and confusion that I constantly battle in my own head.

The problem is that while I  know what I’m dealing with, and why I behave the way I do when I’m out, other people don’t: and there is no way for me to explain even to the few people who DO know me, let alone some random stranger. How would I ever explain that I am mostly so completely overwhelmed by the sheer numbers of people that I can’t deal with it, so I wear headphones to drown out their noise: dark glasses to hide the fact that I am desperately trying to avoid accidentally making eye contact, and to reduce the sensory overload caused by too many sounds/colours/movements that often triggers me and leaves me shaky and frozen because I can’t process it all, let alone deal with it. I can’t actually shut out or mute the constant smells and touches, but if the other senses aren’t being so strongly assaulted it is easier for me at least to focus my energy on coping with those. . That I wear a bluetooth headset so that I can pretend to be talking on my phone (unless I actually AM talking on my phone, and being eased out of a panic/breakdown by my very understanding and patient b/f) so that I don’t have to interact with other people even superficially.

There are so many other things that I wish other people could see from inside me. The brain fog: the horror of realising that I have been standing in a shop/street/room for ten minutes. wearing that now familiar confused/distressed expression because I can’t remember what I was supposed to be doing. Not remembering how to open a jar, or a box: even the frustration because my brain can’t process/remember how to use an ATM for the fifth time in a week, and I’m all too aware of the mutterings (and outright hostile expressions) of impatience from the rapidly growing queue behind me. The constant background of pain that I have to assess every day, and plan my life around. Having to choose whether to eat, or bathe that day because I won’t have the energy for both: having to understand that if I DO push  myself and manage both that day, I will be too exhausted and painful to function for the next 2 days at least. The knowledge that I have to plan every activity days, weeks, even months ahead, partly because of how the pain and fatigue will impact the days and weeks after it, but also because if I don’t have that time buffer to plan and get used to the idea of doing something, I will be too terrified to do it. it With me, it isn’t usually a case of talking myself out of doing things if I know about them in advance… its just the opposite. Time, the opportunity to plan, re-plan, consider, talk about, think about, panic, calm down, cry, accept that I am afraid, work through that, list all of the pros and cons: work out how much energy it’s likely to take, and how badly it will affect me for days/weeks afterward, can mean that I will, eventually be able to do it, however reluctantly.  I wish other people knew that I can’t read their facial expressions.. that the reason I might appear to make a healthy amount of eye contact is that I am afraid not to look at them in case I miss some visual clue about their mood, and find out too late that they are angry/aggressive/bored and be unable to get away before they become verbally or physically abusive. I wish they could see that I am not only uncomfortable but actively anxious and distressed around large groups of people. especially if I can’t easily get away: but that I also try very hard not to be that way. I wish they could see that I am not always being antisocial or self conscious, or ‘rude’… sometimes I am simply exhausted and in pain, and unable to deal with whatever is going on outside of me, because all of the energy I have left is being spent on keeping myself going until I can take my meds and lie down. It isn’t that I’m not listening to you: its that I am so tired that I can’t retain any of what you are telling me. Its that the fogginess in my head is blanketing everything, and I can’t focus. Its that the pain is simply taking over everything, and getting through it is all that I can think about right now. It isn’t that I’m being intentionally selfish.. its that I’m trying to practice the self-care I’m finally beginning to understand that I need so that I can function. And it that this isn’t an ‘excuse’. a way of avoiding work, or laziness. If there was any way for me to stop all of this, and get back to the me that I used to be, before all of this took over my life, I would do it.  But now, THIS is my normal: and I have to come to terms with that…  I just wish that other people could accept that too