Each month I link up with Sheryl over at A Chronic Voice and these are the chronic illness writing prompts she has set for August.
- Unlocking
- Limiting
- Studying
- Watching
- Healing
These are my Chronic Illness Writing Prompts August
Unlocking
First we were in lock down because of the pandemic. Then slowly we have come out of lock down. Then suddenly, it was like lock down never existed for so many people. Back to work, back to life, back to friends and the pub. Things had changed with masks and social distancing, but basically life was back to normal. (And masks and social distancing was ignored a lot.)
When you have a chronic illness, the last thing you want is a virus that could cause so many more implications. I worry about the neurological symptoms that have been reported. I have enough of them already, thank you.
So for us we are very much staying in lock down. I had a letter from my consultant last week that states
“given the significant disability and chronic neurological illness, it is best that strict social distancing and if practically possible, shielding is followed as best as possible – to avoid any complications.”
Saying that, we did unlock the door for the first time and had a socially distanced day out.
Limiting
I guess this follows on from Unlocking. Even though we are being careful, by limiting our contact with others we are striving to keep safe. My eldest daughter returns to work next week but to limit her contact with others, my husband is taking her to work and picking her up. She normally takes the bus as she doesn’t drive herself. She really does need to learn to drive though. As soon as it’s safe to do so.
We are also limiting ourselves to some time away from home. We had two holidays planned this year, and in fact we should be away right now. But instead I’ve postponed them until next year. Instead we have some other things planned that are safer than crowded beaches and long travelling times.
My husband is the only person who leaves the house regularly. He’s the one who pops to the shops. He’s visited his Mum and his friend. Like a lot of others he hasn’t been careful and has stopped his limitations. When we were in lock down he would go out only once a day and then only if it was necessary. But now, he doesn’t seem to care anymore. He even forgot his mask yesterday and the woman in the shop still served him but asked him to remember it next time.
Studying
School is out for summer and the kids were so happy to drop their home education. I actually enjoyed spending an hour or so teaching my youngest. And although he was a pain to get started, I think he enjoyed a lot too. And we both learned so much.
All the kids struggled with learning out of school though, and they are really looking forward to going back in September. I am putting my faith in the school that they are doing all they can to ensure the virus does not end spreading around the schools.
My studies have not been going so well. I was trying to learn British Sign Language. But it’s hard to fit it in. Each day seems so busy and there is never enough time to fit everything in. I need my relaxation time in the afternoon when I read and crochet, or I can’t cope with making dinner in the evening. Then after dinner I am too tired to do anything.
Watching
I have been watching the James Bond movies again. Some I’ve not watched for years, I have been a little shocked at the cultural references from some of the earlier movies. They wouldn’t get away with a lot of that these days.
I also watched The Titanic with the Little Man. It’s really not one of my favourite films, the last hour is the most interesting. But The Little Man wasn’t feeling too good and we were flicking through the tv while he was next to me on the settee and the movie was on, it had already started so we missed an hour of it (yay) but watched the rest. He loved it.
Another day when the Little Man was bored I asked him if he wanted to watch a movie and he picked ‘Detective Pikachu.’ That’s the third time I’ve watched it now, but it still doesn’t beat the girls favourites when they were younger…I’ve seen High School Musical (1, 2 and 3), Frozen, and Monsters Inc. at least six times each.
Healing
Again, I’ve turned to healing from the inside. Everytime I try I get sidetracked with cake or chocolate. I tend to go by a little of what you fancy does you good. I have found some new ingredients I love, like baobab and moringa, which are so healthy for you and can be added to home made smoothies, treats and breakfasts. I’ve been drinking more water and herbal teas rather than regular tea and coffee.
I’ve been making meals from Mindful Chef, a food box delivery, every fortnight. They are healthier meals and have helped to introduce us to some ingredients and flavours. I love it when I can eat a meal that makes me feel full but not bloated. And especially when it doesn’t keep me awake all night with gastric problems. (Like the time I decided to make chocolate brownies at 10 pm and each one warm.)
I’ve also sought out my crystals again. I used to find them so healing many years ago. I remember going to an old warehouse which had been turned into a market and one stall was just full of crystals. I’d never seen so many beautiful stones, but what really got me was that I ‘felt’ them. They instantly had an effect on my emotions. So I bought some and started a collection. I learnt a lot about crystals and the powers of each of one. But then I put them away and forgot about them.
Recently I bought some crystal bracelets on Etsy. They are lovely and I instantly feel something when I wear them. One of them helps me to ward of negativity, the other helps with pain. So, then I found out some of my other crystals and bought a gorgeous flat bowl, also from Etsy, to display them in.
But, I’ve not talked much about my health. In my last post I talked about not tolerating my pain and that I had an upcoming telephone consultation.I talked to my neuro consultant and he has decided that my best option is to go back onto the IVIG. It was obviously helping to keep me stable, even though it wasn’t offering a cure (I remember when I first had it I was hoping it would be my miracle cure.) Sometimes you have to accept that management is the best you can expect. That will be arranged soon. Five days treatment every 3 months.
I am also going for another brain scan to check on Walter, my haemotoma. Fingers crossed he’s been behaving himself.
Thanks for reading, if you want to see what others make of these prompts please check out Sheryl’s link up.
These are my Chronic illness writing prompts August, to see other months you can click here.
I find it so interesting that a lot of people have had the IVIG. One of my friends with Ehlers’ Danlos got a little help with that. I don’t think my insurance will cover the high expense, though. I am glad to hear that it helped you to be stable.
This is why I’m grateful that in the UK we have our wonderful NHS, my consultant just has to apply for funding and I don’t need to worry about the cost. Sadly, our government is working it’s way into selling off the NHS so then we will have to pay for our own treatments. My daughter has EDS I didn’t even know that IVIG was good for that.
I too remain isolating in an area opening up. I also do not like all these ‘associated’ symptoms and longer term affects of COVID… they worry me a great deal if I were to get it and I am sure a second wave is coming in the fall. Anyway, my asthma is out of control and until I get it under some semblance of control I worry a great deal what would happen if I get this virus so I remain indoors.
It’s pretty scary isn’t it. They say even if you survive you can suffer from the after affects for a long time…I don’t need any more ailments.
hi! I have been wanting to try a food kit delivery service but my trouble is I have pains with my hands. Would you say your kit requires a lot of cutting and stirring etc.?
It depends, you do get to choose your recipes, but a lot of them are vegetable based so there is more cutting to do. A spiraliser is handy if you have one. You can buy ready made meals, but they are a fair bit more expensive. I’ve just bought some smoothies for breakfast, but it would be a lot cheaper to make my own. I love them, but I am trying to be honest here.
This article is very awesome I like it
I have been hesitant about leaving lockdown, even though I didn’t have to shield or isolate. My chronic illness is a rare one and nobody pays it much attention so I mostly carry on as usual. We seem to have escaped the virus so far, although I was sure we picked something up at the Blue Planet Aquarium on 1st August! We’ve had no symptoms so that was a lucky escape.
I will be glad to send my children back to school and get into routine again, although we’ve been told that Brownies will not start back until after Christmas possibly, and our dance teacher is still trying to establish her requirements to reopen. The “New Normal” eh?!
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Hi Anne,
It’s so interesting to visit each person’s blog and see how they are reacting to what has happened this year. First off, I’m so sorry you lost your holidays. We had tickets to the Tokyo Olympics in July and I even had disability seats (and reservations about how much I could actually do), but it’s hard to have that taken away.
Like you, my husband is the only person doing the shopping and going out, but he has been doing this for years now. I can’t do it and he seems to enjoy it. Taiwan had two months of mask-free freedom since we eliminated the virus early in the year, but we’re back to masks again now that school has started up and entry to Taiwan has been relaxed. I’m grateful my husband has continued to wear his mask it. It’s just something that almost everyone complies with here, especially when the government says put your masks back on!
I can’t imagine how parents are coping with their kids going back to school this year. I hope you and your family take care.
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In our Country, a band of people find mask wearing oppressive and I’m sure it won’t be long before our numbers start rising. I’m so worried about the kids going back to school, but I want to give the chance of a little normality in such a strange year. I’ll definitely be taking every precaution though.
I can definitely relate to still staying home and the frustration of watching other people not wear a mask when out.
Hi Anne, Another great and very relatable blog post. I agree that the threat of the virus is still very much worrying and like you much of my time has been spent indoors. Although this week I did go out with my carer for the first time since before the lockdown. Interestingly, although wearing a mask hasn’t been madated here in Wales, it was surprising how many people were actually wearing one; and I made sure that I did to help protect other people. I was nervous about going out, after becoming more unsteady during the lockdown but wasn’t as bad as I thought – still kept it simple by just going for a coffee at a small, local garden centre. Glad, yoiu and your son had some nivce together watching films – has always been one of my favourite things to do with my Mum!
Such a good and relatable post! I too have been limiting my time outside of my home and contact with others despite the fact that things seem to be opening back up more and more. Stay safe!
Thanks for joining us once again, Anne, and loved reading about you and your family life, on the other side of the world 🙂 It’s so different from mine and that’s interesting to me. I guess all of us are really healing in one way or another on the inside, huh. And yes – I get sidetracked by chocolate AND cake all the time (and more but don’t tell!).