May Chronic Illness Writing Prompts.

Each month I join up with Cheryl from A Chronic Voice, to use her writing prompts to tell my readers about how I am coping with my health. The May writing prompts are; Foreseeing, Panicking, Upbringing, Accessing and Soothing.

May Writing Prompts

Foreseeing

As someone with a chronic illness I think I kept a close eye on the rise of this pandemic and I guess I did foresee how bad it might become. That is probably why we have been staying home a little longer than most. My children and I had a virus (not THE virus) just before COVID-19 became big news and the kids were off school unwell. I took the decision not to send them back and was worried how long I’d be able to do that. Then within a week the school was closed anyway. The kids don’t seem to be bothered about the amount of time they’ve been off school, despite it being longer than the Summer Holidays right now and not knowing how much longer it will be. We’ve not even done any of the fun days out and stuff we generally manage during the holidays.

Maybe not foreseen but prepared. My poor kids are used to not going out thanks to their Mum being sick. It really doesn’t bother them.

Panicking

I will admit I was panicking about the virus when the pandemic was first announced. I had nightmares, I was scared. My daughter was still working although my husband was taking her in the car so that she didn’t have to catch the bus.

Since being at home for so long our immediate panic is over. We know we are not sick and are less likely to get sick from this virus. We have also been chosen to take part in regular testing for scientific research, so we will know if we have had the virus (I doubt this) if we are immune to it, or indeed if we catch it. It does sort of help with the panic.

There are other things I have had panics about though. I had a confusing letter from the hospital about my MRI scan. It said that ‘something’ was wrong with my brain but I was not to worry too much. What that ‘something’ was I couldn’t work out from the medical terms in the letter. So, I arranged a telephone consultation with my neurologist.

He explained that my brain was under pressure, but it was low pressure which is not as dangerous as high pressure. At some point my brain had bled. This could have been from a blow (which I can’t pinpoint, but I have so many accidents it’s hard to say) or it could be idiopathic. (It just happened) Anyway, I have fluid covering my brain that shouldn’t really be there but it’s not much, not enough to worry about. I also have blood clot, but it’s more like a scab on the surface of my brain, so it’s not in my blood stream, it’s not going anywhere or going to cause me any trouble. (Although, they will keep an eye on it.) I’ve named it Walter, because I always believe that naming things make them less scary. Walter may have caused a little panic at first, but he’s fine now I know what he is.

Finally, I had a panic when I found out that I was robbed! My bank was emptied over the Easter Holiday with someone taking every penny I had. Thankfully the bank was very understanding and I did get my money back pretty quickly. I’m still waiting for Paypal to sort things out though as my account there was hacked too. In fact, I think it was through Paypal that they got my bank details as they were connected.

Upbringing

As Sheryl explained in her list, upbringing is a little mismatched. But I guess it does shape how we live our lives.

I know as a child my family was probably a little different to many. My Mum had five sisters and two brothers and I had many cousins. I also had a few disabled cousins including peers with Down’s Syndrome and Severe Brain Damage. We were brought up to treat them as our equals, and not to focus on their differences.

This prepared me to be more accepting of disability as I grew older and one of my first jobs was working with disabled young adults.

I have three autistic children. The first was a shock, I found it difficult to accept his differences despite my upbringing. This was my child and he was perfect. Over time I realise that he’s still perfect, as are my other children.

I even have to accept that I am now disabled, I do wish my Mum and Nan were around to help me get through this.

Accessing

As someone who doesn’t get out much, I have had experience of poor access for disabled people. The lock down has meant that I don’t have to worry much about this now. There are some areas where I have seen better access though.

As a vulnerable person I’ve had priority access to online shopping. This is so important as I have a big family to feed. I could send my husband shopping if needed, but then he’d be at risk of picking up the virus and bringing it home, which in turn would put me and the rest of the family at risk. There are seven of us at home and many of us health issues we can’t risk bringing the virus home. We also need to eat 🙂

With three children missing school I’ve also found having access to lots of learning facilities really helpful. The schools have been great with providing the access. I’ve already shared one of the Little Man’s p.e. lessons which made us all laugh but which get the kids moving every morning. The Internet offers access to almost everything and it’s wonderful that we have this resource at our hands. I feel if this had happened when my older children were young then we’d be relying on books and television. I guess we wouldn’t even have been able to access regular e-mails and ‘school pings.’ I feel so lucky and appreciate everyone who has worked hard to make all this information so accessible. Teaching at home is a difficult job.

Soothing

Every morning, when all is quiet. I open up my patio door and spend at least a few minutes (depending on how cold/warm it is) listening to the birds. Over on my Instagram highlights, I even have a couple of recordings of this sound. This is how I begin my day, and no matter what is to come I find it very soothing.

Other things I find soothing are my crochet and audio books. Sadly, for the first two weeks of lock down I wasn’t able to get motivated to do anything. I guess that was fear and panic taking a hold. I have now started to get into that place now where I can soothe myself with hobbies again. It’s good to spend some time thinking about something completely different.

I don’t know how long this disruption to life will last, I don’t know what we have to look forward to. I don’t think anyone can really predict it. But taking one day at a time is soothing. It’s all anyone can do really. You can’t really plan for an uncertain future. As someone who plans everything meticulously, I’ve found that not planning has not been as bad as I thought it would be. I understand that for many others that the uncertainty can be very scary and that so many people are suffering and will face more suffering. But, we all need to take one day at at time and start to work out how we can plan changes rather than plan to continue our lives as they were before.

Click the image for more blog posts on the same May Writing prompts.

If you enjoyed my May writing prompts you may want to read more with my April prompts.