Weekly update: flare up, easter weekend

I have spent all week, looking for relief. I have scrolled through amazon, facebook support groups, hoping to find some magic pain relief. But nothing is working. After a week of stomach pain, nausea, vomiting, loosing weight, being told “I am sorry I cant do much”, sleepless nights awake with muscle pain in my legs and bone pain, meaning it hurts to rest, but hurts to move. I reltended and broke down to my mum.

I told her I cant keep living like this, its honestly amazing I have been able to keep in together these last few months, I think any normal person would be breaking down too. I have kind of come to accept a lot of sitautaions in the last few months, but pain is one thing gtaht drives me insane. Its always there, never leaving and I just want it to leave me alone.

Recently I have been increasingly frustrated in my health, I keep watching films seeing chracaters who are sick. And I just don’t feel like them or I don’t want to be them, the truth is we are very similar. I was reading about the illness that killed Jane Austen, and relaised how similar our thoughts, fears, and pains around our illnesses are. I wish we didn’t have these simaialrity. Even as I right this, the ache spreads up my leg, it makes me want to claw off my leg.

The temptation to run off to a warm country, so I can get some relief, as the only thing that soothes is warmth. The thing is right now I am left wondering what is there left fort doctors to do for me. What if we never find out what is going on with me, What if for thr rest of my life, I will have to learn to live like this. And the thing is I could do it, I wouldn’t enjoy it, it would be awful but I could do it. But I don’t want too, I want to truly live. The thing is my conditions have never really bothered me after a while, you learn to live with them. You get used to feeling weak and sickly, but every so often you deteoriate. And you can feel the panic rise in your throat, you try to push it down. You don’t want to worry anyone, its heavy stuff, people have enough going on with there life.

A bit of me thinks sometimes my loved ones resent that I haven’t got better, that I am not getting better, think I should be doing more. And I wouldn’t blame them, I make poor choices sometimes, choose happiness over rest. But they don’t see what its like to play this juggling act everyday, live with this permant panic.

I think the panic is the worst part of it, the trapped feeling. You feel like an animal caught in a trap. Helpless in the hands of doctors who often don’t care, you are just one of many they see till there lunch break. My therapist tells me to believe I will get better, people on the internet tell me its best to accept I may not get better. Both aren’t great options, one feels like giving up the other feels like false hope. Can you guess which way round is which?

The other thing about sickness I hate, is how all consuming it is. It consumes my every thought, I am constantly looking out for warning signs, signs of flares, signs of my diseases, amnd I can see them. But crazy enough other people don’t. I look fine, normal. I don’t feel normal, I wish something was normal.

Something feels very wrong, its like an permant alarm bell going off in my brain, and I cant work out if it’s a false alarm, or one I should be listening to. When the alarm goes off, I ignore it for a bit and over days it gets worse and worse, and I take myself to hospital, sometimes they agree there something wrong with me, sometimes they dismiss. But never can they really do anything for me. When I tell people this they look so confused, even disbelieveing. Its hard tpo understand the system until you are in, its hard to explain how limited treatments and options there are. Or how disbelieving medical proffesionals can be.

For now, I hope and pray to any gods that listen that, my private consulations for my colonscopy and gastro, wont rob my mums pocket of money she needs. She says we have money but sill. For now I hope they find something, anything that proves I am not insane that this pain is a real, because usually I am so sure of myself, so stubborn in it. But at the moment I am starting to doubt myself, doubt this alarm bell. So wish me luck with my tests, appts! I hope you all have a lovely easter weekend.

Love Amy x