ME awareness month

May was ME awareness month. I’ve never really paid much attention to awareness months and days for anything before because I forget about them. Unless it’s all over social media because everyone is already aware of the thing and talking about it. In which case, I never really have anything to add to the conversation.

But this year I was reminded of ME awareness month at the end of April, and decided that I wanted to make an effort to post something. There were prompts being shared of things to post about each day of May, but I knew I wouldn’t manage that. But I wanted to post at least something.

I spent ages looking for things that I could post. Eventually on the 11th of May, I found stuff that I felt okay about sharing. Infographics that had been made by other people, or tweets from other people, that I shared on my instagram stories. That kind of thing.

But going through all the stuff people had posted, to find something suitable, was more emotionally difficult that I expected. It reminded me of how bad I used to be, how bad I could potentially be again, all the things I missed out on (as others talked about things they missed out on), how much I wish I could be healthy at times, how much doctors can suck, and so on and so on.

And that’s the other reason I don’t really pay attention to the awareness days and months for things personal to me. Because it is hard. Because it’s difficult to talk about at times. And I wish I didn’t have to talk about it. I wish people were as aware of ME as they are of other illnesses.

I try to do my bit. To share information about research projects so they can find participants and funding. To post here, where most of what I write is rubbish anyway and isn’t even read by many people, so I can feel like I’m doing something. To pay attention to other people sharing their stories.

But it’s hard. Sometimes I want to bury myself in my duvet and forget about it all. The awareness days and months help people learn. But I wish I could be the one learning instead of the one teaching. I wish I could be detached from it and not have to feel it all so personally.

And I wish the emotional difficulty of awareness days was talked about more so it would have been easier and quicker to put this into words myself.

Medical tests and waiting for results

I have just had my second heart monitor as the first one didn’t get enough data. I’ve also had an echocardiogram.

The heart monitors made me itch so badly. After 5 days with a heart monitor, my skin had actually blistered because it reacted so badly to the electrodes stuck to my chest. And it massively effected my ability to sleep.

The echocardiogram wasn’t too bad but I felt a bit bruised and sore for a day or so afterwards.

Now I am just waiting for results. Thinking about it logically, I’m expecting them to tell me that my racing heart is caused by medication. Or that it’s anxiety, even though I’ve had much worse anxiety in the past without getting a racing heart and chest pain.

But there’s part of me that just expects more problems. Doctors rarely give me good news. So I just can’t picture the cardiologist saying there is nothing wrong with my heart.

Generally I try to expect the best and prepare for the worst. But I’m realising with some things, especially medical things, I always expect the worse. I guess it means I can never be disappointed.

Phone calls and brain fog

When my ME is making my brain foggy, I am slow to respond in conversations. It takes me a moment to process what has been said and think of the response. I don’t think it’s usually that noticeable.

With doctors though, it can be extra difficult. For example, they could ask me how many times over the past two weeks I’ve experienced a certain symptom. And that means I actually have to think and remember what has happened for the past two weeks.

Face to face, it is usually obvious that I am thinking. On a phone call, I just go quiet for a bit longer than would be normal. So the doctor will think I’m an idiot that doesn’t understand a basic question or that there’s a problem with the phone line or something. With my regular doctors, they know I just need a bit of thinking time. With new doctors who don’t know me, it can be a problem.

While I love the switch to phone calls during covid so I don’t have to trek to the doctors surgery, speaking to new doctors has been stressful at times. Especially on my bad days.

“But,” you say. “Why not just tell them that you are thinking?”

That would be the logical thing to do. But when I’m struggling to think anything, it’s hard to remember to say that.

My ideal communication method with a doctor would be video call. They can see me and therefore tell that I’m thinking of the right thing to say or how to explain something. But I also don’t have to go to the doctor’s surgery on days when I don’t even want to get out of bed.

I had one medical video call during the pandemic. It was with a physiotherapist so video was definitely necessary so they could show me the exercises I needed to do. But the set up was terrible. The video wouldn’t work. Then the video worked but the audio didn’t. In the end, we had the video up while also having a phone call on speaker phone for audio.

I really hope that going forward, doctors continue to offer phone calls. It’s so much easier. But also, I would love if they could get video calls working well.