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[ponderingkettle-blog]

One

I hate the way my body has failed me.

Three years ago, I started to get a pain in my left thigh and left hand. I can't explain the pain very well - it was like my nerves were on fire - the pain was deep. Uncomfortable.

I ignored it for a while, hoping it would just go away on it's own. Over time though, it started to get worse. It spread all through my left leg, left arm, left side of my chest, left side of my neck, left side of my face. As if someone had drawn an invisible line down the middle of my body.

Of course, I went to the doctor. I've had so many consultations and scans. No one could tell me what was wrong. Eventually, I was sent to a specialist. After examining me, they gave me a leaflet about something called 'Function Neurological Disorder' and sent me on my way. No follow ups. Nothing. During all this time, I also had to go through occupational health at work, and subsequently lost my job.

I'm now 3 years in, on a heavy mixture of pain killers, and still struggle daily. There isn't anything they can do about it. They don't know what causes it.

Symptoms to date: Continuous pain down the left hand side of my body. Some days are better than others. Fatigue. I didn't know what this was before I got FND. I thought it was just tiredness. But fatigue is so much more. It's debilitating. Confusion/brain fog. I often have times where I will be doing the simplest of tasks, but get confused and struggle to complete them. My memory is horrendous. I forget words, names, dates, things people have said to me.

I don't work. I spend a large amount of my time sitting or napping on my sofa. When I can, I draw. When I can, I volunteer. I spend time playing with my kitten. I never know how I will be from one day to the next. Some days are okay, and I can do house work and go out. Other days I can barely get down the stairs, and the pain is debilitating, despite the medication. If I do something physically or mentally taxing, it causes flare ups, often on the same day, but definitely the next day. I find using a walking stick helps on my bad days. But, I don't use it in the town where I live. It's a small town. People talk. And stare. I can't be dealing with it. What I find hard is trying to explain my condition to other people. I am in constant pain. 24/7. Yet because I have good days, people seem to think I'm 'getting better'. Because people don't see me on my bad days, how I struggle to even make a cup of coffee, they think that I'm doing okay, doing better. I have become used to being in constant pain. I have become used to having to do things in different ways. I have become used to having days where I can't do anything. I have become used to the fatigue and the brain fog.

But the thing I find the hardest - accepting I have a 'disability'. I don't know why. I find it hard to apply this word to myself. That's it for today.