Each month I do a chronic illness writing prompt with Sheryl from A Chronic Voice. This gives me the opportunity to write about my illness without boring you with the day to day struggles of my life. I let it all out in one go! This months prompts are Falling, Transitioning, Choosing, Imagining and Beautifying.
Falling
I was talking with others with my condition (Stiff Person Syndrome plus PERM) on a Facebook group the other day about falling. It’s quite common with this condition because we all tend to suffer with startle reflex. This means any loud or sudden noise or shock can make us stiffen up and fall over. It’s really hard to explain unless you have experienced it. I have never fallen but I think it’s only because I always have something to hold on to. Plus, I never go out without my wheelchair, I simply cannot walk far and certainly not on uneven ground, slopes or open places. Plus there is always someone there to catch me if I did fall!
It’s also the time of year when your mood starts to get lower and it’s so easy to fall into depression. The days are getting shorter and the weather changing quickly. For people like me it’s harder to get out of the house, and even though I spend most of the time at home, at least in the summer time I can sit in the garden and soak up some vitamin D from the sun. I don’t suffer from SAD but I do live with someone who does and it makes life harder all around. Autumn is a lovely month but winter is on the way.
Transitioning
Autumn is certainly a season of transition. I watch the leaves on the trees at the bottom of my garden change colour and drop, leaving the bare branches behind. The story of the last leaf has been re-produced in many ways over the years. The basic premise remaining the same but you can’t stop things from changing. The transitioning seasons can’t be prevented. Neither can the transition of a chronic illness. We can all hope and wish for a cure or better treatment, but generally it’s just a matter of keeping the balance. We can’t stop the leaves or ourselves from falling, but we can hope that the transition is gentle.
My condition is Progressive, it’s in the name, Progressive Enchephalomyelitis with Rigidity and Myoclonus. My consultant likes to remind me of this every time I complain of getting worse. But I’m not ready to transition to the next stage yet. I will persevere in finding a treatment, whether medical or holistic that will help in some way.
Choosing
I’m generally a positive type of person. I like to think that I can stay strong for as long as possible. I do believe in mind over matter and the better your state of mind, the better your health. Of course we can’t all ‘wish’ ourselves into better health, but staying positive can have a better affect on our bodies. I do still get those dark moments when I think there is only one way to end this pain, but I have so much that keeps me going, keeps me happy, keeps me alive. I choose to be happy and to live the best life I can.
A lot of people don’t believe you can choose to be happy, they look for things that will make make them happy. But, happiness is a state of mind, it doesn’t matter what you do or don’t have, you can choose to be happy about it. When you live with a chronic illness you can’t always choose how your body is going to behave, but you can choose how to deal with it. If you are struggling with happiness then look up Brene Brown, she taught me loads.
“I don’t have to chase extraordinary moments to find happiness – it’s right in front of me if I’m paying attention and practicing gratitude.”
Brene Brown
Imagining
Take me back six years and I would never have imagined that I would be this way, unable to walk and in pain every day. Take me back Five years and ten months and I would never have imagined that I could cope with being unable to walk and in pain every day. But this is my life now and I’ve come this far.
I like to imagine that the future can still be better. My consultant might keep reminding me that my condition is progressive, but I like to stay positive and think about how progressive medical research is. There are people like me who have got better. We are all so different, with different symptoms and things to deal with. I still imagine myself getting better and getting my life back.
Beautifying
This is a difficult one for me, beauty does not feature that much in my life. But that’s maybe where I need to change. Maybe a little more beautifying of my home might make me feel happier, but I wanted to have a beautiful garden this summer and that never happened, so I feel a little defeated.
There is one room that I am planning on working on though. The Little Man has the smallest bedroom in the house and we have been promising him that we would give him a makeover for a long time. Well, I’ve ordered the paint and some wall stickers. I just hope I can get someone to do the actual work and give him the bedroom of his dreams. We are going for a sea life theme!
My Little Man has been through a lot in his short life. He does not remember having a healthy Mum which is really sad, because I spent so much time with him as a toddler, running around the park and playgroups and such, but he was only five years old when I got sick. I found this photo the other day, It’s me walking with my kids on a fun day out. The only problem I had with my body then was that I felt fat! Body image is a strange thing, I look now and see a thin healthy woman with her children.
Thank you again to Sheryl for the writing prompts this month.
It must be worrying to have that risk of falling – I’m glad you’ve never actually fallen over though. I do hope that you manage to find treatments that will help slow down the progression. I completely agree that you can choose to be happy – sometimes it is harder than others to look for things that make you happy, but it is a choice. I love that quote from Brene Brown. I’m glad you’re able to stay positive. That’s a lovely photo of you taking the kids to the fete. I’m sorry that Little Man was too young to remember you as a healthy mum. Good luck with transforming his bedroom and I hope he likes it. #MMBC
Louise (Little Hearts, Big Love) recently posted…Friday Focus 01/10/21 – Gentler
I am glad that you have been lucky enough not to fall. You keep holding on to things. I hope you do find a treatment which helps. Staying positive is all you can do an probably better than dwelling on the what if’s. I love the plans for your Little Man’s bedroom. I hope you can get someone to do the work. x
Kim Carberry recently posted…Our weekly meal plan! 4th – 10th October. #MealPlanningMonday
Chronic illness does make it hard not to have dark moments. 🙁
Thank God you haven’t fallen yet. Sending healing vibes your way.
Such an insightful and honest post, Anne, I always learn such a lot from these monthly prompt posts about how others deal with their illnesses. And I am glad that you have avoided falling. I loved your quote:
“When you live with a chronic illness you can’t always choose how your body is going to behave, but you can choose how to deal with it”
It’s not always easy, but definitely, words to live by.
Take Care
Sarah W x
It must be so hard dealing with a progressive condition like yours. I am so glad you try to maintain a positive attitude and try to keep hope. I bet your Little Man will be so grateful to have his room makeover!
Astrid recently posted…Time-Out Rooms, Comfort Rooms, Snoezelen® Rooms: Special Care Rooms in Mental Health and Disability Services #31Days2021 #Blogtober21
It must be be a worry to have that risk of falling – I’m glad you’ve never actually fallen over though, and you make sure you have something to hold at all times. I can’t imagine what it is like to live with a chronic illness especially one as rare as yours, and I hope you find a treatment that works for you and like you say your condition is progressive, but so is medical research x
Fee recently posted…Blogtober Tag 2021
What a lovely and personal post. Thank you so much for sharing all of this – I am so glad your a positive person who can keep staying strong.
So glad you haven’t fallen. I agree with the comment above that although your condition is progressive, medical research is too. I also believe that a positive mind makes a big difference, although of course you’re allowed low moments too. It’s funny when you look back and realise you weren’t big at all. Such a good reminder for us all to appreciate what we do have while we have it. Sorry, you didn’t manage to do your garden this summer, I failed at mine too and it’s so hard to get out there at this time of year as it’s dark by the time I’m free. Good luck doing your son’s room- it will be lovely xxx
You articulate your change of life very nicely in this article, and what a lovely photo for your memories. Good luck with the bedroom makeover. I just finished redecorating my daughter’s room and now I need some time to recover!
Catherine Green recently posted…Chronic Voice Link-up: It’s all Falling into Place!
I love your saying, ‘We can’t stop the leaves or ourselves from falling, but we can hope that the transition is gentle’. Like you, I have a progressive illness (secondary progressive MS) and, though I am not positive all the time, I do try and be as much as I can because being otherwise just makes me emotionally worse! We sound the same in terms of kids too – my son was 5 and my daughter 3 when I started having problems. They can’t remember how able I used to be, except my son remembers me chasing him and playing ‘kissy monster’.
Thank you for the lovely read 🙂
Living with chronic ailments is not easy and very challenging and then patients look perfectly fine from outwards, so your writing about it goes a long way in spreading awareness about it.
Anne, your strength is inspiring. Thank you for your courage to share your experience with us. My struggles are different to yours – they are mental health related – but I understand how overwhelming it all gets sometimes. I am sending you a hug and lots of love xxx
Reading this while in a high level of pain. But sometimes even an opiate seems to not help certain types of pain. Like when I have inflammation based pain or tendinitis it helps but once you move it hurts again.
Opiates are not always the answer but can help heavy pain. However there are many alternatives—though not always the easiest to access for most people