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
- Feeling
- Gruelling
- Tempting
- Running
- Mending
Feeling
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.
Gruelling
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.
Tempting
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!
Running
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.
Mending
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.
Hi Ann – I am so with you in the frustration with people who don’t get it. I feel fortunate that I’m not aware of anybody I know well dying from COVID-19, but multiple friends of mine got it and for most it was a bit of a nightmare(one friend just had a bad headache and felt off for a few weeks). I’m still very aware and concerned about COVID-19, but I’m trying to be as active as I can be while staying safe at(and near) home!
I hope the IVIG treatments are helpful!
Alison
Thank you Alison. You are right, we have to go on living our lives but just be as mindful as possible about the virus. Keep well and thanks for stopping by.
Anne Sweet recently posted…Back to School – Or Maybe Not
I appreciated your post. It’s too bad that they didn’t offer you a sedative during the MRI. I’m always offered one. The last time I didn’t take one, but may take it the next time. The noise makes me feel me so unwell.
Hi Lisa, I always take my own sedative, they didn’t offer me on the first time, but they did the second. After that I use my own medication as I use sedatives to control my condition when I have a bad day. The noise is awful isn’t it x
I think even my introverted self is feeling a little too confined lately. I don’t get out much anyway but now it seems restrictive and potentially harmful. I am beginning to get bored with the things I do at home and feel stagnant. I don’t like that feeling. In fact I hate that feeling.
I understand Nikki, I spend a lot of time stuck at home and sometimes I just start to get cabin fever and feel the need to escape. I’ve really missed my holidays and day trips this year, but somehow knowing that I wasn’t the only person missing out helped a little. Of course since the restrictions were lifted it was different, but I’ve come this far, I’ll just carry on. It has to end some day. Take care and thanks for stopping by.
Anne Sweet recently posted…Back to School – Or Maybe Not
I do understand the helpless feeling when you arrive at hospital and they send you home with no diagnosis or treatment. My rare eye disorder is only known to a small number of specialist eye doctors, and whenever I used to visit the emergency department for help, they would often put an eye patch on and send me home, although I eventually learned that was the worst thing they could do. We battle through our spoonie days!
Catherine Green recently posted…Back to School & up to 25% off Study Guides
So true Catherine, it’s sad that sometimes the treatment we receive make us worse. When my daughter had some bad problems she was sent for physio therapy, thankfully the therapist realised pretty quickly that it was causing my girl more harm than good and contacted her consultant to reconsider her treatment. It probably saved her life. Take care and thanks for stopping by.
Anne Sweet recently posted…Back to School – Or Maybe Not
Such a thoughtfilled, beautifully written response to the prompts. I could feel your ache. It makes me so mad how people not only rile at wearing a mask that would protect others but actually think/say that “this isn’t real.” The can do this out of a place of luxury and ignorance, and won’t really get it until they experience how “life can change in an instant”. Wishing you well.
I am so tired of trying to explain to people that I’m completely avoiding the subject now. A mask isn’t a muzzle, the virus is real. That’s the truth and I’m sticking with the facts. Getting a life changing illness is the pits at any age. Take care and thanks for stopping by.
Anne Sweet recently posted…Back to School – Or Maybe Not
Hello again Anne, well done on anotner great post this month. I totally get your frustration about people not taking the pandemic seriously; compaining about wearing masks it is really bugging me, especially when keeping to the rules and seeing so many people ignoring them. All the best for the rest of the month!
Yes, I’ve had to stop listening. I’ve done so much research and know people who are suffering many months after contracting COVID, it’s no joke. Take care and thanks for stopping by.
Anne Sweet recently posted…Back to School – Or Maybe Not
I can relate to thoughts running around in our heads.