Going to Accident and Emergency with a Rare Condition

When you have a rare condition a trip to Accident and Emergency can be something you become familiar with. When I was first diagnosed six years ago I spent a lot of time in A&E, each time something new presented itself I wasn’t sure what was going on. I haven’t been for a few years though, I got fed up with being told it was my chronic condition and there was nothing they could do.

Last week I had a new type of headache. At first I thought it was just stress related, it was a difficult week with three of my family members coming down with Covid. The pain was right at the back of my head, where you’d expect a stress headache to be. I decided that if it didn’t get any better I’d call my GP.

Yesterday morning I made that call. The headache was getting worse and I found it difficult to move my neck. Every time I move it feel like someone is whacking me on the back of the head with a plank. To the point it makes me feel nauseous with pain. My GP asked me to go in to speak to her. She examined me and felt the stiffness in my neck. She decided that because I’d previously had subdural haematoma (bleed on the brain) that it was necessary for me to go to hospital to get checked out.

My Trip to Accident and Emergency

I arrived in the morning and it was fairly quiet, they ask a lot of questions on the door before allowing people inside and a lot got directed elsewhere. I had my GP letter so I was allowed in. I saw a nurse within 5 minutes to explain what was wrong. I was then seen by another nurse who tried to take some blood but failed. I then saw a Doctor who examined me, asked a million questions and took my blood with success. Then I waited for my scan which happened quite quickly. It was a CT Scan and didn’t take too long, it was a lot easier than an MRI.

I then had to wait for the results. I was worried that they would find something, that my brain was bleeding again, or I had an infection. They had done all of the tests so they were being very thorough. So, I sat and waited, still feeling sick and in pain.

Then I was called back in to see the Doctor for the news. She told me they had found nothing, no inflammation, no bleeding, no infection. No reason at all for my pain and discomfort and no solution to make me feel better. I was told to speak to my GP and get stronger pain relief as it was probably caused by my rare condition and it was something I would have to get used to.

So I went home.

It’s really hard to explain my emotions. Of course I’m happy that it was nothing serious, that was a huge relief. But then I had to deal with the fact that there was nothing that could be done and I just have to live with this pain. It may come and go but it’s a new pain to add to my collection, and one I don’t want.

If it had been something serious then they could have helped me, taken away the pain and suffering and made me well again. Or at the very least they could have treated me. It might have been hell for a while, but there could have been a good result at the end. There could have been a bad result, but at least something would have been done.

I feel that now I just have to shut up and deal with it. Oh, my phone is ringing, I pick it up from the table and WHACK it feels like someone has smashed me against the back of my skull again. But it’s okay, I’m not seriously ill, there isn’t any problem, just my rare condition presenting a new symptom to get used to.