Each month I like to join in with Sheryl’s Chronic Illness Writing prompts over on A Chronic Voice. It helps to think of my life through the prompts that she provides and gives me the opportunity to read and connect with other bloggers with chronic illnesses. Sometimes it’s nice to feel less alone, even if it is pain that connects you. This month I’ve picked out the prompt harmonising from the list as harmony is something I need so badly in my life.
So here are the prompts for this month and my interpretations: Accumulating, Harmonising, Prioritising, Carving and Training. Remember, this is a chronic illness link up so it’s the time I generally focus on how my illness and disabilities are affecting me. I have a rare disorder called Stiff Person Syndrome with PERM. You can find the official website for the UK here.
As someone who spends a lot of time at home, I do tend to accumulate a lot of things. One of them being wool. I love to crochet when my hands are behaving and I have huge stash of wool. I had a big sort out the other day and I am now working on a lot of projects that use up your stash. I tend to write more about my crochet over on my other blog At Home A Lot and I have a few things for sale in my Etsy shop. I’m hoping to get some sales once people need scarves and gloves again 🙂 I am also planning on adding some baby items as I guess they will always be needed.
I also accumulate new symptoms on a regular basis. I write these down in preparation for when I see my consultant which is generally twice a year. I often forget everyone once I’m in the office, or on the phone.
By connecting with other people with Stiff Person Syndrome on places like Facebook, I can also accumulate more information on how this condition affects people. It seems that we have as many differences as we have similarities. One similarity I have discovered lately, though, is that a lot of sufferers seemed to have symptoms start after a traumatic experience, some physical, some mental. I’m thinking there is a lot more in this. I had both physical (falling down the stairs) and mental (bereavement) just before my symptoms became unbearable.
Following on from the information I have accumulated I have realised that I need much more harmony in my life.
Sometimes it’s very difficult living with so many people under one roof. In my home there are four adults, two teenagers and a child. It can be stressful and finding harmony is difficult. I am working on it though, I feel like I am the key, I’m the one that everyone offloads onto, the one that gets the blame for everything. I am central to the family and it’s hard for me sometimes. Tackling an argument between teenagers is a walk in the park in comparison to a disagreement between adults.
Last week my attempts at harmony failed miserably and we ended up with a family member leaving. They just couldn’t take any more, packed some bags and left. It was a bit of a shock as I thought we could get through anything together, especially after all we have been through already. I guess the Virus and it’s restrictions has had a bigger affect on this family member as they are the most sociable and often spent a lot of time with friends before Covid hit our shores.
It seems that the break worked for the time being and it’s made us all make a better attempt at keeping the peace and harmony within our home. That person is now back home and we are trying to improve things little by little
Harmony is vital for me as the more stress I am under the worse my condition becomes. I can understand my family members finding this all so difficult though, it’s not just my health that suffers when we don’t stay harmonised.
I think the events of last week have made us think more about our priorities and what is most important. Of course, harmony is one, but we also need to think about respect and the needs of all our family. From young to old we are all so very different and have differing needs. Having four special needs family members also creates friction. We need to prioritise what works and stick with it.
When you think about prioritising needs you generally work from the one who needs the most down to the one that seems to have it easy. But the truth is, we all need some TLC sometimes and we definitely need some space and self care. So, a healthy person can feel that everything is too much to cope with, while the ones needing help tend to rely on the the healthy person for everything. There has to be some priority to the needs of those that are healthy, putting too much stress on them can be even worse that any of our disabilities or illnesses.
To create the sort of harmony in our home that I long for we have to shift our priorities to include everyone, even those that are fit and healthy.
This seems like a strange one in the mix but I thing that we have to start carving out a better and more harmonious future for us all. I am, of course, using the word figuratively here, but apart from carving the Sunday roast (which is generally my job) I don’t know how much carving we do.
I suppose I could say that I’m carving out a new career for myself, but that wouldn’t be entirely true. I have actually started writing a book, but this is something I’ve thought about for many years but never really got around too. I doubt very much it would lead to a new career, but it’s something that I am really enjoying.
I have already talked about my training to be a crystal reiki healer, I’m not sure where I will go with this. I’m hoping that maybe I can do something remotely to help others. That’s still ongoing though. I’m also doing some Positive Mind Training which I’ve found really helpful. Learning to positively accept things has been an eye opener. I have always been a relatively positive person, but just a few little points have made me see things even more positively. It was honestly a brilliant, short training course that I have taken so much away from.
After a couple of really difficult weeks I think we have found some kind of harmony for now. I just hope it lasts. As for my chronic condition I have found that the warmer weather has been making me feel better. I’ve never been a sun worshipper but feeling warm seems to have lessened some of my worse symptoms. I can’t cope with high humidity or strong heat, but the lovely weather we have had lately has been just perfect. If only it could stay like this all the time.
I have had less spasms and fewer headaches. I still can’t stand for long but my legs are not hurting so much for the short periods I use them. If only this was a sign that I was recovering, what a lovely dream that would be. I’m back in hospital for treatment on June 21st, fingers crossed for fewer side effects and better results.