It took me so long to realize IT’S TIME!
It’s time for me to accept the fact that I need something to help me run all these very important errands in my life independently and perform all of my activities on my own.
It’s time to regain a little dignity – constantly falling in the middle of a crowded shopping mall just isn’t something that will help me boost my confidence.
It’s time to get back that charming smile on my face and give myself a chance to look around and observe the beautiful world around me. To enjoy the sun, to feel the vibe, to breathe in the fresh air with my head raised up high. To check what cool clothes people are wearing and if bare ankles are still a must for this winter.
It’s time to start enjoying walking instead of spending all of my energy focusing on how I walk!
How the disease sneaked up on me
The thing with relapsing remitting multiple sclerosis is that with all the relapses and remissions the disease can still progress quietly – so quietly that you don’t even notice it.
At least my story with MS has been like that. In the first ten years of diagnosis, I had a lot of mild relapses with a pretty good recovery every time – or at least I thought so. I’m definitely in a lot worse shape now than I was after my very first relapse (“Come on, you were able to run again after the first shots of steroids back then!”).
But every next relapse took away another of my abilities, and then another one, and then another one … Each one of them left some sort of a consequence, depending on which part of the brain the new lesions appeared in and whether they were dormant or active.
Slowly I needed more and more help when I was walking – but all of this seemed perfectly normal to me. Every time I went somewhere, I subconsciously took the shorter way or decided to rather take the bus instead of walking. When I wanted to walk a longer distance, I simply used my hiking poles, or if I wanted to walk on uneven terrain, I grabbed my co-walker by the arm.
These things became something completely ordinary and I had never truly worried about them. My mind was focused on the things that had improved – some symptoms really had improved and realizing this had tricked me into thinking that I’m doing even better than before the relapse.
How could I worry about worsening of the MS when these changes were so sneaky and graduate?
First there was a rollator …
In the beginning of 2015, I had a pretty rough year behind me: I was finishing my studies, moving into our new home with my partner, another hairy four-legged member joined our small household (which wasn’t stressful at all), and MS wouldn’t be MS if it didn’t take the opportunity to be particularly brutal during this period.
So, they put me on new DMD’s. At the same time, I started visiting a rehabilitation centre to … well yes, to learn how to walk properly again.
After five weeks of physical rehab I returned home with a rollator. Quite embarrassing, even if it was meant only for “bad days”. It was hard for me to accept that this monster, the MS, may get worse one day. So, I rolled it in the darkest corner of our basement where it remained for three years! Unmoved. Untouched. Unpacked. Covered with dust. Never used, I eventually returned it to the medical supply store. It was my little victory (“You just wait …”).
And then came the sexy red stick
For two more years I sort of dragged myself through the old town centre without any aid. I didn’t even think about using one, but after some really bad incidents, I finally reached the point when it became inevitable and I had to admit it to myself that, yeah, perhaps I do need a stick. Some kind of a fashionable collapsible stick that I could carry in my bag in case there comes a moment when I don’t have an elbow to grab or the next bench is a mile away (since I know the location of every single bench in town).
So, I finally found the courage and will to accept this new necessity into my life.
My first experience of walking with this stick, my sexy red stick, felt amazing; it was like I was suddenly walking with such ease! I no longer feared that I will bump into someone. I no longer needed the walls to support me. I no longer had to walk with my head down. I suddenly noticed the looks of others (realizing they are all passing me by, barely or not noticing me at all).
And then it hit me: I feel happier with the stick!
Why did it take me so long?
Maybe because I was too stubborn to admit that I need a mobility aid, maybe I was in denial. Maybe I was too afraid what other people might say or think. Maybe because this would mean a sort of a defeat for me— that I’d have to admit it to myself and my closest ones that I have failed. That I’ve thrown in the towel. Maybe I just didn’t see this option beneficial. Maybe it would end up being just one more thing out of the (many) things I keep forgetting at random places (like my umbrella – but who doesn’t?!). Maybe, maybe, maybe …
In some way, I was somewhat proud of myself that I was still able to walk without any aid, even though I knew it deep down that I should have one; because you know – I am a warrior. We are all warriors!
I remember the words said by my physiotherapist back then: “You should not see the mobility aid as failure. You should see it as a new way of your independence.”
And it’s true: a mobility aid gives you the freedom to move around normally, independently and with more confidence. It makes you feel safer. It makes you feel more self-aware and it gives you strength to carry on.
This doesn’t mean I stopped fighting MS. I’m still a warrior. But from now on, I’m fighting with a new “weapon” – my sexy collapsible red stick.