Those two words sum up how I’m feeling about life at the moment. Forget Brexit and the political turmoil it’s causing. Forget everything beyond what is happening with my body. The sudden worsening of symptoms has scared me. Feeling almost constantly light headed when doing anything but lying down scares me. The increase in pain which painkillers isn’t touching scares me. The constant feeling that I need to sleep scares me.
I know I may have just picked up some lurgy. I know I may have overdone things lately; pushing through when I should have rested. And I know in time these things will pass, or perhaps I’ll just get so used to them they will become ‘normal’, but right now they scare me.
Looking to the future scares me too. I try and live in the moment, survive each day, making the best of whatever situation I find myself in. Because no one knows what the future holds, I’m hoping in time I will be able to be less dependent on my parents, meet someone to spend my life with who is willing to accept and try to understand my illness. But I also know the future is uncertain, there is so little I am able to do; to me it feels like I do a lot on a “good” day, however if a healthy person was to do the same they’d probably spend hours bored out of their mind, and wonder how I can call that a “good” day.
My reality is so different to that of my family, of what I imagined it would be. I’m scared that life is passing me by, but at the same time because I’m so unwell I don’t feel able to do anything about that.
I know feeling scared is really only natural in this situation. I mean I don’t think anyone wouldn’t be scared at a sudden worsening of symptoms. But that doesn’t make this any easier. For now I just need to focus on getting through each day, hoping there will be small improvements that add up to something bigger in the future.