Progress Pressure

Normally, I'm not a fan of "hello, I'm eating my toast" status updates on facebook etc, but this morning I felt like having a bit of a talk... so I thought "I'll have another go at that blogging thing".
I was going to delete my previous blog, but I've decided to leave it online. There aren't many posts on it, but it's kind of a comfort to have it there.

Life has changed a lot for me recently, mainly with my health. I struggle a lot with people saying, expectantly, "Oh you look so much better", most of whom have the knowledge that I'm on a specialist and very expensive drug (infliximab - treating the Behçet's Disease that I have) that took 18 months of fight for approval from the local authority (PCT). So, therefore, the expectation is that I MUST be getting better. In many ways I am. But perhaps it is not a linear improvement, in the way that most people expect. People expect progress, they expect you to move forwards, not backwards and certainly not in a disjointed way. I feel pressure to report a "status update" in true facebook fashion, to report my improving health (whether that be true or not), in order to facilitate their comfort, their peace of mind.

Other people who surround those who are chronically sick find a point where they cannot cope with that person's inability to improve. It doesn't mean that they can't move past it or find a way to live with it, just that they struggle.

It's easy as the "sick person" to forget the struggle that those around you go through. I'm mindful of it, but I do forget.

Even on here I find I'm pulled between making this readable (I hope!) and being truly honest. Even letting go of the need to check my grammar is painful. I have been so incredibly angry when people have corrected my speech in particular. Everyone makes mistakes in grammar, me more so because of my bloody brain (Neuro-Behçet's). I want to tell them to F-off. But really, I am very angry at myself for my brain's inability to control what comes out of my mouth at times. It's disruption of my perfect order. But yes, I am really angry at other people too, for highlighting the flaws in my brain, my failure to control my speech, grammar, memory, reasoning skills etc.

I'm bloody sick of trying to make life easier for other people, it doesn't mean I don't love and/or respect them, because I do. I love my friends and family, but I am worn out of having to "improve" in front of their eyes. Quite possibly this is my own expectation of what is expected of me by them. Like I have failed as a person if I don't, as if I have wasted this marvellous opportunity of the very expensive drug, because my body didn't respond as it was expected to, or certainly not quickly enough.

I really am getting better, but it is extremely slow (and messy) progress. I cannot any longer make it all "nice" for everyone else, I am too tired for that. Tired in my brain bone.
I'm also too tired to keep up with the weight of my own expectation, my need to control everything so that nothing bad happens. Other people let me do it and it's time that they didn't.

I have been afraid of conflict my whole life, my mind weaves these careful little scenarios so that it can avoid it (which translate into real life avoidance of it).

And on that note, I like this, sorry if you can't read it because the background is too busy, but that's just how my brain is.