Each month I take part in The Link up party from A Chronic Voice where Sheryl gives us writing prompts. Here is my take on the November chronic illness writing prompts which are:
Incorporating, Experimenting, Sanitizing, launching, writing.
Sometimes I sit here and think that things are not right, I shouldn’t be so responsible for so much when there is a chance I’m going to be around the shortest time. I’m a control freak, I really believe that no-one can do anything better than me.
I need to start incorporating some new habits, new ways of doing things. Letting go a little more and giving more to other family members. I think this is going to be one of the most difficult things for me. Once upon a time everything I did was controlled by someone else. I didn’t mind too much, because it’s strange how you accept things sometimes. But then I had to cope alone and I had to take control. The hardest thing now is letting some of that control go.
But, I don’t have to turn things back to how they were before, I just need to incorporate some new ways of doing things that release me from total control, but also allow me to be in control of my own life. Can I do this?
I experiment a lot, especially with my health. I’m always trying new ways of trying to improve things. Whether it’s a new drug, a new therapy or a new diet. I’ve tried so much over the years.
You have to keep experimenting, because you have to keep hoping that one day you will find something that makes things better. This year I became really bad when my infusions were paused. It was my idea to stop them because I didn’t think they were working and it seemed such a waste of time and money to continue. But after a break I realised that they were keeping me more stable. It might not have been the cure I’d hoped an wished for, but without the infusions I went downhill very quickly. I’m now back on them, experimenting, along with my consultant, the best dose and frequency. They might not be my miracle, but at least I’ve stopped feeling so surprised that I’ve actually woken up in the morning.
With Covid around I have been through all sorts of issues with sanitising. We are now careful but have settled into our new routines. I clean door handles in the home much more carefully, we remove our shoes on entry and the kids change their school clothes before they even come to say hello to me. Hand washing is happening much more frequently.
It doesn’t really matter though. You can be really careful but still get bugs in the home. We have had stomach bugs and colds in abundance this year, despite our extra efforts.
I would so like to be ready to start the launch of my Etsy shop this month. I’m not sure I will ever be ready though. They say it’s best to have at least ten products available before setting up shop. I have three, not very impressive is it. I am thinking of making some smaller items to get the number up. I really need to get a move on.
I’m also re-launching a blog of mine. Zebra Hooves. It’s been live since 2013 and I recorded a lot of my daughter’s journey there. But it has been neglected in the past couple of years. I was going to start a new blog, but there is a lot of background information on this blog so I though maybe a relaunch would be a better option.
I have Facebook pages where I update myself and my daughter’s medical issues but I have become very disillusioned with Facebook lately and I’ve decided that if people want to continue reading our stories then they can do on Zebra Hooves. It’s a place where I will be offloading and informing. I’m a big believer in blog therapy.
I love writing, here on my blog and in my journals. Last year I took part in NaNoWriMo which is a writing event for the November where you just write as much as you can each day. I’m not doing it this year but I did get really far last year so I may take some time to go over what I wrote and see if it’s worth writing more.
Or, I may start writing something else. There is a lot I want to say but I hold back so much. I truly believe that putting it all down really helps. It doesn’t matter if you intend it to be read by others or not. It just helps you get things off your chest. I find writing an amazing, wonderful therapy.
I will also be writing my Christmas cards. Last year I didn’t bother, but this year it’s been such an awful time for everyone. I really think that a nice card with a message is the only way to connect this year. There won’t be any big family get togethers, or parties. I won’t be seeing anyone but my direct family. But I do want to reach out to those who I have neglected in the last few years. I hope a little card through the door will make a difference.
And I’m also happy to be here writing my November chronic illness writing prompts, thanks Sheryl.
A little addition from me as we in England approach our second lock down. Nothing has really changed much for me or my family. We are still staying home as much as possible and not mixing with other people.
The Little Man is going to school which is going well at the moment although I am in the belief that if we are locking down then the schools should close too.
The girls are going to school on a reduced timetable in a special classroom where extra care is taken to keep them safe and isolated from the other students, but still giving them the option to stay on the school register and get some work done. I am supplementing this work at home with a program of educational lessons which compliment the school curriculum.
I don’t have to go back to hospital until January, so fingers crossed things will be a little better by then.
It seems like this has been the craziest year I’ve experienced and I’m so sad that my children have had to go through this. I just hope that we can come through the other side real soon.
Stay safe everyone x
This is my chronic illness writing prompts for November, if you wish to see more you can find them here.