These last couple of months have been really tough. It feels like the carefree happiness of the past years all somehow caught up with me. I mean, I’m always ‘on it’ when it comes to life’s administrative tasks and firefighting problems. However, various problems have landed in my lap in one blast, and it has felt like the building might burn down.
Since the summer I have been dealing with more demands on my time and energy. I have been doing the usual managing of health, my disability foundations, working, and having nice leisure activities.
Over and above this, my muscles have weakened slightly due to my Spinal Muscular Atrophy, and my posture has worsened. This meant my wheelchair isn’t supporting me properly. Also the hunt for accessible housing and subsequent mortgage/solicitor demands has been draining. Having completed on the house and received the keys, I now have a 38 week wait for an Occupational Therapist appointment to get an accessible shower. I’m also close to getting a new car, which is procedural every 5 years, following months of form filling and fittings.
In my last post about business, I explained the difficulties of self employment. I’ve been juggling website development, writing, video presenting, strategising, managing, meeting, progressing everything and more.
As a result of all this my physical health began to dwindle, in turn creating future worries, which could have tested my emotional state, and paralysed my ability to think and act.
It is often said that having a disability requires resilience. Whether I’ve learned this attribute or gained it genetically I don’t know, but resilience has certainly got me through.
After a very low day a couple of weeks ago, I’ve simply ‘acted’. Subsequently things are seemingly coming together. I started by sharing problems with loved ones. These chats lead me to speak with many health and social care professionals…
So far I am working alongside my GP, NHS continuing care manager, Professor Kevin Talbot (SMA expert at Oxford University), and SMA Support UK to set about improving the situation. We’re looking at my sleep, diet, physio, swimming, tai chi, better wheelchair seating, required housing adaptions, and planning my work hours better.
The support from these professionals has varied from just being there and offering help, to giving specific pieces of advice, to chasing/pressuring people, and looking for funding.
I’ve got a long way to go before I’m on a good equilibrium. Plus I’ve got a Local Authority care assessment coming soon in light of the Independent Living Fund closure next June.
When it rains it sure pours!
Importantly I now have a plan, the right people with me, my positivity back, living for the moment (and trying not to have irrational or uncontrollable thoughts about the future), and I am confident things will be ok.
Your takeaway here guys – action leads to action, which leads to solutions.
See you on the other side 🙂