Unsettled

Today I have been OUTSIDE! I spent a few hours out of the house with one of my best friends, mixing with those in the real world.

Today was a huge achievement, especially so soon after Christmas, and it was wonderful. I am so thankful and happy and proud of myself…

But, as a poorly person, it’s not as straightforward as it sounds. It was also a huge deal. After a couple of years of illness I am now able to control the anxiety (that comes as a result of being so poorly for so long) and so I was able to get to sleep okay last night. I was also able to get up ‘okay’ and didn’t panic about whether I was well enough to get showered and dressed, let alone get out of the house… I am more laid back about my ‘new’ life perhaps? Or maybe I’m just used to it? Or maybe, today was a better day? I didn’t bother with make-up but wore ‘proper’ clothes rather than the sack-like comfy items I usually pull on. I did up my own laces (boom!) and was even laid back enough that I forgot to put on my medical I.D bracelet (that has become somewhat of a comfort blanket.)

So I made it out of the house. Sat in an uncomfortable chair in a hot cafe and then walked around a few shops in our small town. And I was thrilled!

But, as sometimes happens now, I am left sitting here with the awful bittersweet feeling that can come after I do something ‘normal’. It’s as if I’m never satisfied isn’t it…

I have had a taste of real life and now it has been snatched away again. It is a huge ordeal to spend just a few hours out of the house, yet I used to be one of those people; who nip in and out of shops and run errands and meet friends on their lunch break and go to the bank and try clothes on in the changing room…

And after socialising I sit and wonder whether my sentences made sense or whether I’ve said something I shouldn’t have or whether I gave a true impression of my poorly life or left people wondering what all this fuss about illness is about. Was I boring because I’m poorly and lack energy now? Did I have anything interesting to talk about? I don’t always want to talk about my illness, but I don’t really have anything else to talk about…it has become my whole life. It dictates the programmes I watch, the books I read, the food I eat, the clothes I wear…

I don’t want to feel like this afterwards. I have no reason to, not when you have friends like mine. (Girls if you’re reading I promise with all my heart that it’s nothing personal; you are all faultless in everything you do for/with me. This is just yet another byproduct of chronic illness.)

I was nervous beforehand too. Not as much as usual but I was. About the noise and business and my ability to be able to find the right change when I was at the till or cross the road quick enough. Mostly I was nervous about the inevitable aftermath. You begin to dread doing anything that will exacerbate your condition or symptoms.

I am irritated with myself for letting the negatives out-way the joyous positives that I felt earlier today, immediately after my outing. Will the wired feeling have settled enough for me to sleep tonight? Will tomorrow be okay or will it be a bed day, or worse, a spoon-fed day? In truth, tomorrow will be what it will be. It is beyond my control and out of my hands. Worrying is a complete waste of time and energy, but this is very different from the worry I felt pre-illness…I can’t put my finger on it, sorry.

I just wish it was all a little more straightforward. The people in my life already do everything possible to make my life easier; this is something that’s down to me. It’s not my fault, but it’s down to me. I can’t ‘switch it off’ like I wish I could, and I don’t always have the bittersweet feeling, but when I do have it, well, it’s horrible if I’m honest. Still, I refuse to lock myself away and let the anxiety side of things win…

I just don’t want it to be like this.

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