A week ago I posted a picture on Facebook of my first outing on my mobility scooter to our local Westfield Shopping Centre. It was a momentous occasion. The adrenalin of being able to move more than 50 metres kicked in and before we knew it 90 minutes had passed.
It was a lovely afternoon and I don’t regret it for a minute. So many friends and family who saw my post on Facebook were excited to see me out and about. Expectations that this was a whole new beginning for me were expressed in loving comments. I so appreciated every one of those comments and the spirit in which they were written.
The next day I felt reasonably ok. I think the adrenalin of having achieved this huge milestone was still running through my veins. I even managed to colour my hair the following afternoon, although once I started I began to realise I was probably pushing things just a little.😕
The 2nd day after my outing was a huge wakeup call. I couldn’t move. My legs were in so much pain it was as if they had re-broken. The muscles were so fatigued they couldn’t support my weight. My whole body felt like it had gained 100kgs and the inflammation throughout my entire body was rampant.
I had taken a leap too far. My own expectations, having purchased the mobility scooter and the expectations of others who were willing me to be more active and mobile and have something of a more “normal” life, were driving me to push beyond what my disease will allow.
It’s a week since that outing & I have been more crippled over the past 7 days than I have been over the past 2 years. My quality of life at home has been terrible. Before pushing myself to get out and about on the scooter, I was able to enjoy short car trips to local cafes or to sit in the carpark and take in the beautiful views of the Bay. I was able to potter happily around my home independently, cleaning in small bursts, sitting in the garden, writing at my desk, chatting on the phone & most importantly providing support to the members of my online forum.
I’ve tried to continue to do some of that over the past 7 days but it has been so limited and I am still not able to get the pain under control.
It has all been a leap too far.
So what does this all mean for my future adventures on the scooter? It means lowering my expectations. It means not feeling guilty if I can’t get out on the scooter at regular intervals. It means being content to use it, not necessarily as a leisure item but as a transport means, for important or special outings that require me to get to from A to B when I can’t make the distance on crutches.
My bone disease attacks my muscles as well as my bones. It causes my bones to die but it also causes muscular atrophy and Avascular Necrosis. The vibrations of the scooter unfortunately aggravate these issues. In conjunction with an Occupational Therapist, we have made as many adjustments as possible to the scooter to help alleviate these consequences but we all knew we couldn’t eradicate them entirely.
Living with a chronic disease well, means living with realistic expectations. I will always test my limits…..that’s just who I am and what I’ve always done no matter what life has thrown at me. However, I also have learned to be content with whatever state I find myself in.
I will get back on the horse, so to speak, but not tomorrow or the next day or maybe not even this month & that’s ok. I will also make sure that my next adventure on my scooter will be no longer than 30mins and we will carefully assess how I fair afterwards. Slow and steady will be my approach.
My “normal” is so very different from what others can or can’t do. It’s unique to me but then that really is the case for everyone. After all what is “normal”?
What is important is being happy and having the best quality of life possible. I have that in spades & if I’m not posting photos on Facebook of me out and about, rest assured I am happily content at home doing the things I love, things that are within my limits.
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at The Mighty