May

​May is a month that I’m facing with both gratitude but also sadness. It’s Nan’s birthday this month. I miss her. The way she smiled and chuckled at us and how she could make everything feel better. I miss her scent and reassuring touch. She was an amazing woman who had an infinite capacity for love and her family was her biggest joy. These last few years have been so difficult because of the Covid-19 situation and sometimes I felt like it was never going to end. I still feel that way. I’m still scared that someone else could get taken away. I’m scared of getting it myself because I don’t know how or if I could survive it. Losing one grandparent was tough, but to lose both of my grandmothers within the space of 10 months was the worst. 

The gratitude I feel for May comes from the fact that I am still here after many years of health problems and uncertainty. 8 years ago, I was started on oxygen and it was such a change. I never realised how poorly I was beforehand. I was just making do with what I had. It’s never something that I planned, like going from being able to walk to only being able to go short distances and eventually needing help to get around because the HSP (hereditary spastic paraplegia), among other issues, that has been steadily progressing was making my legs numb and hard to control. Which is why I’m now in a wheelchair.

If you have ever been hypoxic, you know how rough that can be. It’s like your mind and body are full of lead. You can’t think straight and you have no energy. I often felt sleepy, disconnected and unable to even focus on anything. It was like I was just sat with the world going around me and I couldn’t even follow it. It’s hard to explain the fogginess I’d been feeling. It was the worst feeling I’ve ever had. The way it affects your whole body all at once, then your body tries to compensate and that takes even more out of you.  I remember being told by doctors that I wasn’t going to make it to 30 with how my health was. My 30th birthday was the biggest triumph, I’d defied the odds and every year since is another reminder that one thing I’ve always been really good at is survival.

It’s not been easy. I’ve struggled to come to terms with the whole situation and how self conscious the tubing felt on my face. How other people reacted to it, some were kind others were not, and how different things felt when my disability went from invisible to plain for all to see. Before, I was able to hide how I was feeling and often faced people who didn’t understand what I was fighting and all of a sudden it was obvious. The hardest thing was when I saw someone who knew me before I was sick and their reactions to this new way I was living. It was overwhelming how many of my friends and family supported me and it really made getting used to things so much easier. My psychotherapy last year was a real revelation in of itself. You never know quite what you’re capable of until you try. 

Recently, we found an old card in a box of mementos. I’m one of those that keeps old cards, letters and things like that. They’re all things that when you need a reminder it’s definitely a reminder of the things you want to hold on to. Seeing Nan’s handwriting again, I could almost hear her voice and I did have a little cry. I miss her. I really do and it’s something I guess I’m just going to feel. Though her words of encouragement have helped spur me on a bit. 

I’ve been having appointments recently regarding my hernia and getting the thing repaired. Since the initial consultation, we were worried that perhaps my lungs wouldn’t be able to cope but the recent appointment with the anaesthetist has given me more optimism. Not entirely sure when it’ll happen but it’s definitely in the pipeline. The main thing I’ve got to do though is try and stay as well as possible and get my body ready for this. I know when it happens, Nan will be there and watching over me so I’m not as scared. 

Hopeful of things to go as we need them now.

Til all are one

Wendy xx