Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for September.
Writing Prompts for September
I think being at home so much means that you focus on your feelings a lot more. Sometimes it’s good, but sometimes it’s not. When we first went into lock down I felt scared but soon settled into a kind of peacefulness. We had passed the period where we knew we were safe and stayed home to keep it that way. Most people were doing the same so it didn’t feel like we were missing out. We were happy in our little bubble.
As time as gone on, my feelings have changed. I’ve found myself getting angry at people not taking the pandemic seriously. I’ve felt annoyed, sad, confused, misunderstood and practically any other feeling in between.
I missed my holiday this year, the change of scenery the peace of listening to the sea roll in, and the enjoyment of the children running around having fun. Instead we’ve been stuck at home, being entertained far too much by screens and totally missing any kind of pleasant scenery. I wish I had a nice garden but gardening is beyond my abilities and no-one else seems interested in helping out. Sometimes being at home has felt good, other times not so.
When you have a chronic illness sometimes getting out of bed is gruelling. Making your way through the day is gruelling, then trying to sleep at night is also practically impossible. I found some of the tropical nights we had this year particularly gruelling. I couldn’t sleep because I was way too hot, but the fan would give me a headache and having the window open just let in the noise of the neighbourhood. By the sound of it, I wasn’t the only person who couldn’t sleep but I don’t think I was quite so vocal about it. Probably because I wasn’t fuelled with alcohol.
Also, I have just had another MRI. I find these particularly gruelling, although I am getting used to them. The first one I ever had was abandoned when I had a panic attack. The second was so long it gave me nightmares. Since then I’ve learnt how to cope with them much better. This last one was not so bad at all. I had to be pinned down which I hate, but at least I didn’t have to wear a mask too. I was given ear plugs and head phones which I’ve not been offered before. It all helped to make it an easier experience. It’s just a shame that my body doesn’t like them either. When they pulled me out I’ve been lying still so long I couldn’t move. They had to wrench the panic button out of my hand and massage my limbs to get me feeling again. Then sitting up was incredibly painful. I was so disappointed because I’d managed so well while inside the machine.
Quite the opposite, I think I’ve done really well in resisting tempation. I’ve cut down a lot on foods that are not good for me. I have made some big changes to my diet and it has definitely helped me health wise. I’ve had much less problems with bloating for one.
I’ve used Mindful Chef to help me improve my diet, it’s easy when you can get all you need given to you in one box to cook. But, I’m learning a lot and I hope that soon I will have a lot more on my menu that will help to make me feel better as well as full!
I think, as someone who can’t use their legs, I’m going to use this prompt to write about the things running about in my head.
The COVID-19 virus is never far from my mind and it astonishes me that some people just don’t feel the same. People carry on as normal, adamant that the virus won’t affect their lives. And it’s true, for a lot of people it won’t, they could even catch it and recover in just a few weeks. They are the lucky ones. But would it hurt for them to think of others less fortunate?
I read something today that made me think again. More thoughts to add to the marathon in my mind. If someone has never experienced chronic illness then how can they understand how it affects a life. It’s not something that anyone can really understand, it’s hard enough to understand when you are living it day by day. I sometimes wonder how I’m going to carry on living when I know that each day will be filled with pain. Even to me it can be unthinkable.
If you have not experienced being sent to hospital in pain and then told, oh, we don’t know what to do, we can’t treat you, then there is no way that you would believe it to be true. But it is. If you are fit and healthy you instantly think that if you get sick then the doctors will fix you again. It’s not that simple, but it’s hard to think otherwise.
If you don’t have anyone in your life that you fear might die if they get the slightest illness, then how can you imagine what it would feel like having an invisible virus that’s ready to jump on them at any moment?
These thoughts have been running around my mind and I’ve been trying my best to understand. Had this virus been around 10 years ago, I would have reacted very differently too. People can’t comprehend that life can change in an instant. People protest about confinement, masks, social distancing, not being able to work or go to school. Apart from the masks, these are things that have already restricted my life for a long time. I have no choice and it’s doubtful it will ever be any different for me. For others, a normal life will resume, it’s tough, but it’s not forever.
I know there are others out there who understand only too fully. For everyone else, all we can ask is please be patient. Your life will resume, providing you don’t catch the virus too bad.
I’m always trying to mend, my health, my state of mind, my family disruptions the list could go on. Mending is just a way of life for me.
At the moment though we have our car in the garage because it needs mending. After just a year it broke down and couldn’t fixed by the RAC so it’s off to the garage. We have a courtesy car so we still have transport which is good because next week more mending will be going on.
Starting from Monday I will be on the day ward each day all week at the hospital receiving the infusion that mend my immune system. I’ve read that my treatment IVIG was given to patients with COVID in China which helped their recovery. I am hoping that by giving my immune system this boost it may make me less likely to be affected by COVID should it come into my life.
For those that don’t already know I have Stiff Person Syndrome plus progressive encephalomyelitis with rigidity and myoclonus (PERM)
Do check out Sheryl’s site for more chronic illness blogger’s takes on these writing prompts for September. Click pic below.