Each month I love to join in with Sheryl from A Chronic Voice with her chronic illness writing prompts. This month she has chosen, Finishing, Fatiguing, Easing, Comforting and Wishing.
Using the prompts I can let my readers know how I am coping with my chronic illness each month. I have a rare neurological condition called Progressive Encephalomyelitis with Rigidity and Myoclonus (PERM) and it’s a plus to my Stiff Person Syndrome. My condition appeared quickly in 2016 (Although I had signs something was happening in 2015) and is progressive so I don’t expect to get better. I do try all I can to manage my condition though. Having IVIG every six weeks has practically eliminated the myoclonus which is a big bonus.
So, let’s get started on Sheryl’s Prompts.
I am currently taking a course which is helping me understand a specific way of helping mental illness, Dialectical Behavioural Therapy. It’s really interesting but it takes a lot of concentration to absorb all the information. I hope to have it finished by the end of the year.
I was worried that my IVIG would be ending but it looks like my consultant has increased the approval until at least April next year. I am in hospital this week for my infusion over 3 days and my next session is just before Christmas. I do get some side effects but the timing means my session will be finished in time to give me a couple of days to get over them before the holiday begins.
I love my crochet and I have recently finished a lovely blanket that I made for myself. It keeps me warm and saves me having having to put my heating on so often.
Fatigue is one of my biggest issues but I still have the ability to turn into superwoman (supermum) when my kids are sick. My daughter was admitted to hospital twice during August and September and I lost so much sleep, particularly all night in Accident and Emergency with her. Normally, I can’t function throughout the day and I’m constantly tired, but because my daughter was ill I managed to summon this super awareness that kept me going. Sometimes I’m glad I am in a wheelchair because it means I always have a somewhere to sit, I do think my next chair needs to be a reclining one though.
My fatigue often causes a massive brain fog and I often feel like I’m doing things in a drunken haze. Yes, I remember those days coming home from the pub after one too many and trying to make a cup of coffee or some toast! These days, I don’t need the alcohol to feel the same. I do hate not being able to express myself sometimes though, talking as if I’m drunk and forgetting what I was saying half way through a sentence. I believe it’s caused by a mixture of my illness and the drugs I take for it.
With the colder months here now I find that I spend more and more time snuggled up on the settee with a blanket (hand made 😉 ) and watching television or listening to an audio book……and falling asleep.
Sheryl suggests easing into the Christmas season. I’m normally a very organised person and my lists are written and presents bought early on. This year I’m definitely taking it easy, I have no idea what to buy anyone but I’m not going to panic. It will be sorted eventually, no rush, just take it easy.
We have also had to ease ourselves into a different lifestyle after my husband’s heart attack. He wasn’t looking after himself and his habits were a big contributing fact to his illness. With both me and his daughter with Chronic Illnesses, we have realised just how much we need him around, so we are encouraging him to make changes and ease himself into a new way of life.
I have also been looking into new ways of easing pain. I have used a TENS machine on my legs and back to ease pain for a while now but I recently brought a mini TENS machine for migraines. I used to suffer from migraines because of my hormones and I was so glad when they stopped after the menopause. But now I get them after I’ve had my IVIG treatments and they can be horrendous. So, I’m hoping the TENS will help ease them.
Last week I was presenting a new pain in my upper stomach. At first I thought it might be acid related, particularly because the pain was so bad I was vomiting. The GP though the same and put me on anti-acid medication. I didn’t get much comfort from the medication and I was unable to sleep because the pain was even worse when lying down. So I went back to the GP who examined me again and told me I had a cracked rib. Now, I have been given strong pain relief which I hope will help until it heals itself.
I managed to sleep last night by making myself comfortable with extra pillows and blankets. Once in the right position the pain was more bearable and I was able to sleep.
So, how did I crack my rib? I must have been the coughing I had when I caught Covid. The last time I cracked a rib was after I had pneumonia and the cough was very similar. Thankfully, I’m no longer coughing, so I just need to wait for the rib to get better by itself. I should have been more aware because not only have I had this happen before I remember the bruising on my rib area when I was sick with Covid.
I am also comforted by actually getting over Covid quite quickly. I was give biologicals by infusion which gave my immune system a big boost in fighting it.
Every time I watch the news I find my heart sinking. The war in Ukraine, the Cost of Living Crisis in our Country just to name a couple of awful situations that are pushed into our faces on a daily basis.
If I could wish for anything it would be to end all war and conflict in every Country. Too big to wish for?
The money crisis is worrying but we have our heads above water at the moment. This is the time of year I book our summer holiday for the following year, but that’s something we have to sacrifice for now. We have also decided to keep our current car for a while longer. We are entitled to get a new car every 3 years but the cost of the deposit has tripled and we need some time to get it sorted. It would be nice to wish for a huge amount of money, maybe a big competition win or some other windfall. But at the moment I just wish for things to stay balanced. I’ve suffered debt problems in the past and never want to go back there.
I could wish for a cure for my condition but that’s unlikely. I’ve been wishing for a new treatment from my consultant, but he won’t approve it. I got a little hopeful when he said he’d ask if my blood tests showed I had a large enough amount of the rogue anti body that started my condition, but the IVIG is keeping it under control and the results came back good. So, it’s catch 22, the treatment I have is not making me better but stopping me from getting worse. The treatment I want could possibly make it better, but my doctor won’t give it to me unless my current treatment stops working.
We could all wish our lives away, but if there is one thing I really wish for it is that my daughter finds her way to being well again. As well as her two stays in hospital she has had endless appointments and a district nurse come out to see her. I didn’t get chronically ill until I was 50 years old and I’ve found that hard enough. My girl is only 17 and has her whole life ahead of her. So please, whatever powers may be out there, hear my wish and make my daughter well.
Thank you for reading. Do pop over to Sheryl’s blog and catch up on all the other’s interpretations of the writing prompts. Together we are a community of chronically ill. We are stronger together.
You Can read my October Chronic Illness Writing Prompts post here.