Chronic Illness

I was 16 years old when I can recall the physical pain started. I was getting sick all the time. I felt fatigue, sore and nauseated. My family put it down to my mental health.

I was a kid who’s mum just passed away, obviously sad but there was more going on. I was having my own battle with physical health except people just thought it was mental health, including me. However, looking at where I am now I don’t think it is.

It’s 2020, the pandemic is all around but the restrictions are eased at least where I am and everyone is attacking like it’s Christmas. Yet the only times I can go out is with my support workers.

The sun on my skin feels awful and I have to try my best not to look at everything around me otherwise I get sensory overload. I just have to focus on my support worker.

I miss going out alone, but it’s scary and too challenging out there for me alone. Maybe one day I’ll be back up to it. But the anxiety this illness causes is beyond anything I have felt before.

Sometimes I may look like I’m coping to some people. I’m smiling. I’m laughing. Of course I wanna still feel like I’m living. I wish I could think about 5 years from now, but two minutes from now is a challenge.

It’s the little things that are now impossible or set me into shaking frenzies like washing my dishes or vacuuming my floor. Even sometimes messaging on my phone hurts.

That’s why my bed is my friend.

Fast forward to August of 2020

Chills were coming out of nowhere, I sat by the fire trying to keep warm, but couldn’t.

My brain felt like it was spinning in the inside and my body felt like someone had injected cement.

I was getting less and less energetic and food preparation was becoming a struggle.

I was dropping things.

Flashback to March 2020

I was feeling sick but not as bad I could go to PT sessions nauseated and gym classes even when I felt sick but then well doing an eight week challenge I feel sick. I developed a cough that just couldn’t shake. It’s happened other times I’ve been sick but this one I haven’t managed to shake.

The journey to doctor took place a five minutes later. But no doctor would see me face to face because of my symptoms being similar to Covid. Multiple doctor visits later and hospital visits later I’m told they I have CFS/ME.

The only problem is my doctor thought Fibro and CFS were the same thing. This added to the stress of being sick so I decided to go to a new clinic. The new clinic seemed good a first but then didn’t know how to help and wanted me to have another Covid test (by that time I was sick of them) so I could come in.

I decided I couldn’t wait and went back to a previous centre who claimed I had symptoms of both CFS/ME and Fibro

Now November 2020

I have recently gone to hospital for stomach pain and been told I have gastritis related to IBS yet another thing to add to the list.

Next step is the rhemunatogist who will hopefully confirm the suspicions and end the constant ringing in my ears “but you haven’t been diagnosised are you sure it’s not just anxiety”

I’m scared for what’s next but I’m hoping the people that really care about me will be there to support me in the right way.

Listening goes a long way.