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.
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.
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.
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
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.
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.