“I want to run
I want to hide
I want to tear down the walls
That hold me inside
I want to reach out
And touch the flame
Where the streets have no name” - U2
What started off as a search for a pinched nerve, turned into an unexpected discovery. In 2011 a doctor explains that my left arm being numb, was a result of my stress levels, bad posture and fatigue. Not exactly a logical explanation, but who was I to question a professional and think there should be something more to it? To think that 3 years later, Dr. Rudi Renison found that there was something more to it, something called MS. July 2014, the official start of MS and I.
When I was first diagnosed with MS, I couldn’t get past the fact that I must’ve had it for years already. I couldn’t accept that when I knew something was wrong, and I sought help, nobody could in fact help. A couple of years wasted when I could’ve started treatment then already. How much did my MS progress during those wasted years? It was as if my body was speaking a language I did not understand.
Not being in control, is not something I handle very well. And MS is all about not being in control. I would have a full day planned, but on that day, wake up with no energy whatsoever. So, an active day becomes a ‘Me day’ of lying on the couch, watching TV. My mother would ask me a question she has asked a couple of times before, and I would snap, instantly. Or I would try to formulate a sentence, but struggle to find the words I know my brain is trying to get to. I would seem unreasonable, sound stupid to myself, but at the same time I wouldn’t be able to stop any of it from happening.
My first major hurdle after diagnosis, was getting onto medication. After-all, when dealing with a progressive nerve condition like MS, your fighting chance is trying to slow down its progression. It took me basically a year to get onto Avonex. Not even to talk about getting used to injecting once a week and taking the side effects as they come. I have been at this since September 2015 and it remains a challenge.
MS also makes you very aware of what you can and can’t do daily. Something as simple as trying to peel a butternut, only your hands keep dropping the same piece on the floor repeatedly. Before I had MS, or before I realised that I had MS, I didn’t think to pay attention to what I could or couldn’t do.
In having MS, I am faced with such a scary reality that I sometimes choose not to deal with it. Avoidance, denial, running away from it, whatever you want to call it. It took me two years to join a support group, because I didn’t feel that I could handle being faced with how bad MS could get. I also can’t see myself becoming involved in a serious relationship, because I wouldn’t want anyone to feel obliged to take care of me, should my MS take a turn for the worse. The scars that MS leaves are as much emotional as physical it would seem.
Having MS has been, and still is, a journey. I started hiking because of MS, thinking that the fresh air and sunlight might do me good. This has become my escape from everything, including MS. If I feel stressed out, it clears my head. When I am fatigued, I choose a trail that is less strenuous. But when I feel full of energy, boy do I walk. I have already done a weekend hike at Cape Point of 33.2 km and I am hoping to do a five-day hike come next year. I would never have done any of this before I had MS.
All in all, I think I am doing OK for now. I have days on which I feel like my body needs a break, but then I try to not take on too much. Every now and again though, when I feel like I have more energy than normal, I try to do more. Navigating between these two extremes is not always easy, but as long as you listen to your body and adjust your plans accordingly, all is okay. Thinking about the future is very scary, because it is difficult to imagine exactly how bad it could still get. It is difficult to think or wonder how much more MS can affect my body. If I focus too much on the future though, I’ll end up missing out on my present and I don’t want that. For now, I choose to be cautiously optimistic about MS and I. Cautious, because I don’t know what the future holds and optimistic, because I am doing okay right now.