I have an app that is designed to monitor symptoms of chronic illness. I wear a monitor on my wrist to check my heart rate, oxygen level, quality of sleep etc. It’s helpful. It warns me when my vital stats are out of sink. It records my heart rate variation, which is a big indicator of how well my body is coping. It has also been good to have an accurate idea of how much sleep I am getting (not much). You can rate symptoms every day and compare over time how various issues are affecting you. Overall, would recommend the app.

There’s just one thing that gets me down. The final thing that is recorded daily is ‘crash’. Basically, did I run out steam that day. Sadly, the answer is yes. Sometimes my energy tank is empty before reaching the dat’s destination. Other times pain takes me out. Others, still,I get too dizzy to continue. Lucky me, some days it’s a combination of all three. Of course this means that I rarely accomplish what I wanted (or needed) to. It frustrating and depressing and often really destructive. Constantly saying ‘I can’t’ wreaks havoc with every aspect of life. Be it personal or professional, I’m letting people down and it kills me. The guilt is enormous. As is the disappointment. I’m ambitious; my head is crammed with ideas and I had a very different life planned. Not being able to execute my plans in a grand or minute way is heartbreaking. 

That’s the thing about chronic illness, it breaks your heart and you just have to carry on. I’m continually having to find a different way to operate. My lists of can’ts is forever growing and changing, thus I must be flexible. I’m working with a different set of tools and I try to remember that. However, always ticking that box is a daily downer, which happens to be another intrinsic part of being chronically ill. It’s not often that the big things floor me. The huge issues pull all your focus into jus getting through it. It’s an hour by hour what needs to happen to come out the other side of this. There’s no time for dissecting. It’s the drip drip of daily symptoms that really torture me. The dreaded realisation that this thing is here to stay, that’s what fucks me up.

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