It’s time for my monthly round up with Sheryl’s writing prompts from A Chronic Voice. This month the prompts are dealing, thinking, reacting, experiencing and viewing. I’m going to take the prompts one by one and apply them to my chronic illness life.
Dealing
It’s only the end of February and I have already had so much to deal with this year. A lot of it has to do with my daughter, Star. She is getting sicker all the time and even though we are being helped now, it’s very slow. I’ve learned over the years how to deal with our medical system and once you are more knowledgeable of how it works it really does help. I’ve noticed that the Accident and Emergency department works like a script for a television program. The words spoken, the tests done, it feels like everything is scripted. I waited in a cubicle with my daughter for 7 hours one night and we were right beside the nurses office. Every person that came to them was told virtually the same thing, time after time. I even tried it out myself and ventured out to ask some questions and I was told the same as everyone else.
The truth is that they are dealing with so much they have to work this way. Only those who’s life is truly in danger are treated differently. When my daughter was seriously ill she was seen within an hour and rushed off to a ward with treatment in place. But, if it’s not life threatening then it’s always the same route through the system and often the result is to see your GP. I am often told that my problems are due to my chronic illness and I have to see my consultant. Even when I present with something completely new. The last time, however, they did send me for a precautionary x-ray and found issues which resulted in a follow up x-ray a few weeks later. So, maybe that wouldn’t have been picked up otherwise.
So, I’ve been dealing with Star’s illness, which has meant quite a few sleepless nights. And new issues of my own which are not causing me too much problem at the moment but may get worse but I’ll just have to deal with that if it happens.
Thinking
My mind has been a mess of late. I know that I get depressed sometimes but I usually go down the line of catastrophising everything. However, it may be because the world is quite capable of it’s own catastrophes at present, I’ve been thinking that people are the problem. This has made me feel distrustful and think the worst of everyone, even those closest to me. (Mostly, those closest to me.) I know my thoughts are irrational, which is somewhat helpful because it makes it easier to deal with. But, I really don’t like this ‘new’ kind of depressive thinking. Life can be very difficult when you become distrustful.
The thing that has helped a lot is kindness of others. Some people are just too nice to think the worst of. Then there was something someone shared that Brene Brown said really resonated with me.
“I know my life is better when I work from the assumption that everyone is doing the best they can.” –
Brené Brown, Dare to Lead
Brené Brown is a great inspiration and I’ve listened to many of her TED talks and read her books. If you need some ‘thinking’ inspiration I thoroughly recommend her.
I think I’m getting over this now. My Dialectic Behaviour Therapy is very helpful, as is mindfulness, which helps with not thinking at all.
Reacting
It’s been a strange couple of months and my reactions have reflected this. Having to deal with a sick daughter while being ill myself has been particularly stressful. I wrote about my caring duties here.
I seem to have two modes.
- I am fully in charge and can deal with anything life throws at me, including sleepless nights, hospital visits, housework, and looking after everyone
- Not being able to do a SINGLE THING
Thankfully, the second mode only happens when I do too much of the first mode. Sadly, I do way too much of the first mode and the second mode is inevitable. There never seems to be an in-between mode where everything runs along smoothly.
I’ve reacted by becoming depressed, but as always, I deal with it. I’m used to dealing with the worst and I think I’d probably crack up completely if I had less to deal with, I’d probably be stuck in my second mode permanently, without chaos keeping me going.
Experiencing
I’m going to split this into too modes again.
First up pain. Arghhh, some days I just want to scream and roll around on the floor (if that was possible) The pain can be incredibly unbearable, but I just pop my pills and think of something else. What I have been experiencing is a new pain. Well, it’s not so new now as it’s been around for months, but it still hasn’t been identified. I do have Covid damage to my lungs which could be a part of it. But the Dr who discovered my bad lung said my pain doesn’t seem to be the type of pain it would cause. So, it was put down as musculoskeletal pain. After talking to my consultant he has ordered a CT scan for me to see if there is actually anything else going on inside there that may be causing this pain. If nothing is found then I will just have to accept that this new pain I’m experiencing is just a part of my chronic illness.
I know from experience that when a new pain like this presents itself it becomes something you end up dealing with. It’s always good to make sure that it’s not something that can be cured before you reach this conclusion, but this has happened a few times now. When I think about some of the issues my chronic illness causes that I have just learnt to deal with it feels quite astonishing. I still remember the first time I felt the paralysis, and the tests that followed. But now, I just focus on my breathing and wait for it to pass. I just have to keep hoping that my feeling will come back.
Secondly, I’ve been experiencing some ‘normal’ life. I went out with friends to the ballet and afterwards for a meal and drink in a pub. It was so good to catch up with friends and talk about normal things. Then I met up with an old friend I haven’t seen for years, and it was lovely. You know when you have a friend that you don’t see in ages then you pick up straight away like it was only last week! There was no awkwardness at all between us and we enjoyed a nice pub lunch and again, a catch up.
Viewing
When you have a chronic illness you get a lot of time in front of the television. Don’t be jealous if you are well, it can get pretty boring and frustrating at times. I’d much rather be doing housework or shopping… who am I kidding!
I never thought I’d become a binge watcher but sometimes I find it difficult to stop and end up having to impose a time limit. I always seem to be playing catch up though, so don’t expect some great new ideas from me. I did watch the fairly new young adult series one of Lockwood and Co. Great if you like ghosts!
But, I’m catching up on Happy Valley. I’ve only watched the first series so far. It was quite harrowing and I have to be careful who’s around when I watch it. A weird thing happened when a person who I’ve met in real life and followed online for many years, did a post where she said she had a massive crush on the ‘bad boy’ character. I felt crushed, HOW? WHY? He’s a misogynistic rapist and murderer, with absolutely no redeeming qualities. Say the actor is nice looking but for heaven’s sake don’t say you like a character…the actual character… like that! I had to unfollow. It was during my period of distrusting humanity in general, but it really annoyed me that someone could say that just for the likes and comments on which ‘bad boys’ her followers liked.
I’ve also been watching Travelers. I think I watched the first one years ago but didn’t watch anymore, but I’m onto series two now and it’s really addictive. It’s about people coming from the future to try and save the earth.
I really wish I could watch The Last Of Us but we don’t have it on our channels or subscriptions and I’m reluctant to take out another subscription. I remember watching my older kids play through the games.
I’ve been watching the Great Pottery Throw Down on Sunday evenings which I really enjoy. My last experience of pottery was at school, so a very long time ago! But I do enjoy watching what the contestants get up to.
As a family we really enjoyed Traitors UK. The ending had us squealing with delight, it was so emotional. So we decided to watch US Traitors which was set in the same castle in Scotland. It was so different, the characters were different, the gameplay was different and the ending was very different.
So that’s what I’ve been viewing lately and that sums up my monthly Chronic Illness writing prompts round up.
Thank you so much, Anne, for joining us each time we have a linkup. I really appreciate the support and participation 🙂 I am sorry to hear about Star, and your own mysterious pains. I totally understand what you mean, as I too have had such experiences, though of a different nature. Being passed around from psychiatrist to neurologist to rheumatologist. The thing about my Lupus I guess, is that it likes to ‘travel’ around my body haha.
I hope you manage to stay inspired and peaceful. Sending love!
You have had so much to deal with already this year. It seems so unfair. I hope things start to improve soon. Sending love and hugs. x
Hello Anne – I do hope things begin to look up for you soon. As Kim wrote above, it seem so unjust having all of these things launched at you. Every time I read one of your posts, your strength and tenacity shine through. Sending you very best wishes
Sarah
So sorry you have to deal with chronic illness and pain as well as your family’s health issues. I do hope and pray that things will improve. Sending love xxx
Hi Anne,
My heart goes out to you. So I’ll start with something fun in regards to your tv comments because I do it too! Have you seen Blown Away on Netflix? I ask because you mentioned you liked the pottery show. Blown Away is about the art of glass blowing. I binged it. LOL.
I’m so sorry to hear how much you’re dealing with. Your comment about having two modes: fully in charge and dealing with it and then not being able to do a single thing – Oh how this resonates with me. That is such a perfect description of what I’m living. Sending you love and understanding.
I’ll have to look out for Blown Away, my adult son used to do glass blowing at college and I’ve got many of his creations. It might be something he’d like to watch with me. Thanks for your kindness x