Life… Clichéd as it seems, dealing with life is what strong people do, right? You put on your army gear, ramp up the volume of your favourite tunes and tell life to get out of the way because you’ve got things to do.
Having MS can sometimes feel like fighting in open trenches, also.
Towards the end of 2004, I started experiencing optic neuritis and extreme fatigue. Six months later I was diagnosed with MS, by then I had gone through such an extensive list of emotions and events that at times, it seemed as if there weren’t enough words that could describe MS’s impact on my life.
Fast forward to 2016, and while my ability to understand the emotions around having MS has been a fast learning curve not just for me but for my family and friends also, MS itself continues to throw the occasional spanner in the works. Trigeminal neuralgia (or facial nerve pain) returned around 2011/2012 with something that resembled vengeance, a vengeance unwilling to listen to alternatives.
I can live with normal neuropathic pain but optic neuritis and trigeminal neuralgia (TN) makes me trip up because I am an intensely visual being as I thrive on using – or abusing - my eyes in every way possible. Throughout my life I’ve had my eyes firmly fixed on letters, words and sentences, so I read anything from milk cartons to James Joyce’s Ulysses, or I write poems or parts of books into notebooks. I also let my eyes use and abuse anything from watching grass grow, staring at paintings by Caravaggio or other art wherever and whenever possible. In short: losing my eyesight because of MS scares me a thousand times more than the possibility of being in a wheelchair. That is when MS seems like more than I can handle.
Having to explain what optic neuritis feels like to people who don’t know that an eye can hurt is one thing; having to explain how easily facial pain can be set off is another story altogether. I have seen many raised eyebrows when trying to do both and have often despaired at the lack of understanding, or the “Oh; it’s probably not that bad!”
Especially with trigeminal neuralgia, talking, laughing, smiling, eating, brushing teeth, a whiff of cold air, a light touch of my fingers on my face or tears rolling over my cheeks can lead to an extremely painful stabbing sensation but yet it sounds implausible to many. Knowing that the older I get, the more TN will be present in my life, a future better not thought off. And that is also when MS seems like more than I can handle.
Because of the type of neuropathy, I often feel abnormal under its pain. While I do know my MS inside out, I don’t always want to share its nastiness. We all agonise in our own distinct way and my perception of my illness is my own reality. In that mind frame, I do what I can to get through life as unscathed as possible, without making mountains out of molehills.
Because of the severity of TN or ON, it’s often difficult not to think about its shooting, burning and lasting pain because it interferes in every aspect of life. However, I have learned to sail around different pain patterns by identifying it is there, while refusing to give it my full attention.
When I consider that MS sometimes seems like an upwards battle, I tell myself that I have a choice. It’s about choosing what kind of influences I want to occupy my mind. Do I want to feed my mind negativity, or do I choose positivity no matter how hard it might be? In fact, my unsung heroes are all those with chronic or terminal illnesses who take ownership of their life as well as their illnesses. They create positivity out of negativity, step out in the sun each day, smile despite their pain or setbacks or despite the time they have left. Life with MS can often be a proverbial pain in the backside, but when I think of those people, I know I made the right choice… Choosing positivity and knowing that pain is temporary, but giving up is forever.