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.
Finishing
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.
Fatiguing
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.
Easing
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.
Comforting
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.
Wishing
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.
If you ever find yourself in need of more help then therapy might be the answer. I tried it once but then Covid restrictions hit and I just couldn’t do it from home. I should really go back and try again. Sally’s post tells you what having therapy can be like.
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.
Thanks so much for joining us once again, Anne – you’re the best! I plan to get my entry written after all my exams mid-month!
I’m sorry to hear about your family all being ill. It must be heartbreaking 🙁 I hope your broken ribs are getting better… I’ve also broken them before just from coughing… I guess I’m on lots of prednisone too so it doesn’t help.
Sending you well wishes and a wishing you a happy holiday season (no harm getting into the mood early, right?!). x
The course sounds really interesting. Good luck with it and that’s great that your consultant has approved your IVIG until at least April.
hehehe! That did make me chuckle when you said you always have somewhere to sit due to your wheelchair, it’s true though, a reclining one sounds amazing.
I hope Graham is making the changes that he needs to. Sometimes a massive scare like a heart attack are a wake up call.
Oh gosh! A cracked rib, it seems to be one thing after another at the moment. I hope it heals soon.
I hope your girl gets well again too. The poor love has really been through it and she’s still so young. x
Thanks for sharing your thoughts 🙂 I can relate to your emotional/mental symptoms although your disease is new to me. I especially like your sense of will and grace as you face your daily life.
Sending hugs to you all Anne and I’m sorry to hear about your husband’s heart attack. Long term illness is frustratingly hard to deal with but I’m happy to hear that you got over Covid quickly.
#MMBC
Thank you for sharing so openly and I’m sending you lots of hugs, you have so much to deal with. I would be interested to hear how you get on with the TENS machine for migraines, it isn’t something that I have tried for migraine as yet- fingers crossed it brings you some relief.
Take care
sarah x
Ouch….a cracked rib on top of everything else! I have osteoporosis and regularly get rib fractures from simple things like coughing, sneezing or just turning in bed the wrong way. I hope that improves soon for you. When mine are fractured, I find that I can lie on my good side as long as I ‘hug’ a thick pillow. Might be worth trying.
The Ukraine situation is awful isn’t it? It shouldn’t be happening. And the cost of living crisis in the UK is an absolute nightmare. Everyone is feeling it. Well, maybe not everyone. There are some very wealthy bankers and energy companies. I hate to think what will happen during a really cold winter when vulnerable people feel they can’t afford to turn their heating on.
I hope that you benefit from the Dialectal Behaviour Therapy and I hope your daughter improves soon. That must be such a worry for you.
Sending you a wish that you are all feeling a little better coming up to Christmas. MMBC
I enjoyed reading your post, Anne, but am so sorry for the rough time you and your family have been enduring. Praying for you all! This is my first time participating in a linkup.
This was very well written and interesting. I’m wishing good health to you and your family!
Sorry to hear of your daughters ill health. Hope things get easier for her and that you are all staying as warm and healthy as possible.