I’ve had a very testing 6 weeks. In fact I’ve had a pretty tough 6 months. I learned from you in my recent poll that shared experiences are helpful. I think we all take away something for ourselves when connecting with what others go through. So here’s my news and what I’ve learned through quite a tough time. I hope there’s something of value for you in reading it.
As you’ll know I have Spinal Muscular Atrophy type 2. It’s a genetic condition I was born with that means the messages don’t all get from my brain to my muscles. It’s not paralysis, I have full feeling. It’s just that my muscles are much weaker.
This results in me needing a power chair to move around in the day, care assistants to help me with personal, overnight and domestic support, having equipment like my lifting hoist and shower chair, my adapted vehicle, and of course funding for these vital inputs. It also means winter colds and coughs can be hard to shift as I have weaker diaphragm muscles. I call chest infections my kryptonite ?
As you also know, with these factors in hand, I live a very energetic and fulfilled life. I relish personal growth. I love spending time with my loved ones, being at home and on adventure travels. I also LOVE changing the world around disability inclusion.
So when my independent living inputs or health goes down, it’s fair to say life gets hard! I’ve had 6 months of fighting and struggle around care and equipment. On top of the hugely exciting but challenging growth of Purple Goat. I’ve then had 6 weeks of physical and mental health recovery after losing a close friend and having covid.
Instead of laying out all the chronology and all the struggle, I just want to share what it’s taught me. My idea for this article was never to garner sympathy or pity. I’m ok now having got through the worst of everything. But the growth and clarity from this weird time definitely is worth sharing.
Heres my 7 but by no means complete list of things I’ve learned:
1) Our own health and that of loved ones is really the only thing that matters in life
2) During my lowest point I truly appreciated the smaller things. Delicious food with Kasia, walking Sunny the golden retriever, and well wishes from crew
3) We all go through tough times, but these are the moments we can truly understand ourselves and grow from
4) The past is fixed but the future is always full of new opportunities. The power of your dreams is fuel through any adversity. Harness it well
5) It’s ok to sometimes pause, rest and let go of trying to control life
6) As a disabled person there’s a lot to juggle, but things always come together when you don’t give up
7) We are most often our own worst enemy. When I took the pressure off myself, the perspective change was transformational and things got easier
As mentioned above, I’m out the other side now and excited to get back to normality. Just better equipped and ready for whatever may come my way. I’m grateful for this recent experience as it’s shifted some beliefs and habits for the better. Here’s to a huge 2022 with health, leisure and changing the world!
I’d love to know if any of this resonated with your experiences, or made you reflect on anything with a different perspective. I’m looking forward to writing a bit more on my personal experiences, so do let me know any topics you’d be interested in reading about too. They won’t all be so deep and philosophical ?
I know that since becoming a full time wheelchair user my mental health has suffered and it was also exacerbated due to lockdown. Try as I might I find myself still looking at the world and all the things that could go wrong and become a doom and gloom merchant.
I am struggling to get my optimistic side back to life as there is constant bitching from the ‘DIRECTORS’ in the building where we are renting and I have already reported them for disability hate speech to the POLICE ALREADY AND now looks like I will have to escalate the same.
My partner, who has become my main carer has had it the worst and she is looking to buy the flat we are living in as there is no housing available to us and the alternative is a care home with dementia patients, where I think I would commit suicide as I am a bright man with two degrees and coming up to 66 this year, so do not feel life is over yet.
Martin trying to stay positive is difficult and I think I need to go to a mental health session to talk out my frustration and feelings. I used to ride a Harley Davidson Trike and am fighting with my partner to get her to allow me to drive again. This choice is likely to be taken from me and it feels like another part of my independence has gone.
I cannot even get out of the flat on my own without someone with me and I want to tell them to leave me alone for some quiet time.
I did not realise how I was feeling until I started this response, so this has hel-Ed to crystallise things and I will contact my GP Monday. See your article has done some good already, thank you