The Struggle

So I’m ill. Chronically ill. So I will always be ill. Sometimes I might feel worse or a bit better than others, but there is no cure for what I have. This is probably one of the hardest things I have ever had to get my head around, aside from depression. 

I wasn’t ever allowed time off from school as a child, unless my arm had fallen off or something and I carried that through with me to adult life. I feel guilty when I’m ill and need time off. I feel bad that I need to lay there and do nothing quite a lot of the time.

Since my diagnosis, I’ve been learning a lot more about my two conditions and things make a lot more sense now. I always wondered why when I felt at my worst, the thought of anything but the saltiest food imaginable made me feel sick. Well, it turns out that salt makes me feel better and I’m encouraged to eat more of it (I also take Kelp tablets and magnesium supplements so that I don’t have to eat so much of it).

Anyhow.

I’ve not made that many drastic changes to my daily life. I drink a lot more water, I eat a lot better and more selectively, I work a day from home to try and limit my travel time, I try and walk more for some steady exercise….but that’s about it. I still work a 9-5.30, busy job and commute to London. I still do the cooking, cleaning etc. I still do my best to go out and about and live a life….. but GOD, sometimes this is hard.

I forget you see. I forget that I’m ill. Not just a common cold ill but really, I have quite big, potentially serious things wrong with me. I read about people with my condition who are wheelchair bound, who can’t support their own heads or eat solid food or manage to leave the house. I am forever grateful that I don’t have the symptoms that severly but this is a condition that changes, there’s no saying it couldn’t get worse.

Sometimes I am almost normal….sometimes I am so exhausted, that I can barely stand up. Not just tired. When I say to someone ‘I’m really tired’ and they say ‘oh me too’, I don’t bother to laugh or say they have no idea, but they probably don’t. It’s not tired like you need an extra hour, it’s tired like you’ve not slept at all for a week and then flown a few long haul flights. My legs don’t work and I misjudge spaces and walk into things, my hands cramp and ache, my body is lead and jelly at the same time. I mix words up and can’t hold a thought. My stomach stops working and won’t digest anything. I can’t breathe properly. I’ll get a migraine so bad that I think I’m going to vomit, stop breathing and maybe black out.

But I forget all this and get cross at myself for not being able to do everything. For wishing I could have a few days a week off. For not being able to go to everything or stay to the end on nights out. For me, it’s just normal but sometimes I really do have to force myself to remember that it’s not normal at all and to cut myself a little slack.

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