The summer that I graduated high school I was preparing for University and excited about all the possibilities that laid ahead of me. But I started to feel weird. Like, really weird. Weird to the point where every time I would lower my head, my entire torso would feel like I was being stabbed by tiny pins and needles. If you placed anything cold on my body it felt like it was burning. I started getting clumsy, as I was falling down a lot. I initially didn’t think anything of all it but I eventually decided to go to my doctor for kicks. He referred me to a Neurologist then sent me for an MRI. After the MRI scan the Neurologist booked me into the hospital for a spinal tap, also known as a lumbar puncture (traumatizing!). A couple days later he gave me the news, I had a form of Multiple Sclerosis (MS) called relapsing remitting MS. He explained to me that it is a neurological condition that effects the nerves in the brain and spinal cord, whereby the body mistakenly attacks and damages the outer coating of the nerve cells. Subsequently, this means that messages can’t be sent along neural pathways or between nerves. As a result, basic motor functions like walking and holding a pen could be troublesome. It is incurable, effects everyone differently since it is unpredictable, and doctors are still learning about it.
That was a lot for an 18-year-old to take in. The neurologist assured me I had a type of MS where I might never have another relapse in my life – that I should essentially “forget” about my diagnosis. I followed his instructions and received steroid treatments for my symptoms for three, intense days.
Starting treatment helped me to forget about the seriousness of my chronic illness but the fact remained – the relapses didn’t go away as the doctor assured me they would. They were relatively frequent and interesting in their seeming randomness. One painful relapse, which occurred in my eye, left me with blurred vision and had me seeing flashing lights. Another relapse caused a numbing sensation in my right hand. As a chef this could not have been any more inconvenient. One time a relapse lasted 5 months, pinging from body part to body part. The neurologist failed to mention that one of the persistent symptoms of MS would be a suffocating, often times debilitating and utterly draining fatigue. This would leave me so wiped out that I would feel like I was going to vomit from the exertion of doing something as simple as getting out of bed. I could write an entire article just on fatigue to explain how it is not “extreme tiredness”. Try to imagine having the flu and being jet-lagged at the same time. Multiply that by 100 and you’re a little closer to understanding the level of fatigue those with MS deal with.
One time a relapse lasted 5 months, pinging from body part to body part.
Over the years I’ve been dealing with my relapses and fatigue in addition to all the other crap that MS brought my way but I didn’t really have much medical support at all. I didn’t have regular yearly checkups with a neurologist nor any contact from an MS nurse, who should have been assigned to me as a first point of communication if I experienced any problems or had any questions. Basically, I slipped through the cracks somehow. Because of this I wasn’t made fully aware of the fact that my MS could get worse and potentially leave me disabled in the future. This was information that I had obtained myself via various websites and MS charities. Consequently, any time I had a new symptom or relapse, I wouldn’t want to worry my family so I would downplay it. I didn’t give it much attention and I would call it “nothing” and push through another 12 hour shift at work with dodgy eyesight and 8 cups of coffee to help me drag my exhausted butt through the day. I would be fine, the dodgy eye would fix itself, it would be OK, it’s not a big deal… hello denial.
Fast forward years later and I finally have an MS nurse who is wonderfully patient and kind. She has been influential at supporting me after dealing with my not-so-sensitive neurologist. The other week I had an appointment with her and she proceeded to discuss disease modifying drugs. While these new drugs are not a cure for MS, they reduce the frequency and severity of relapses. I expressed my concern that I was under the impression the drugs would bring an onset of unpleasant side effects. I was told I could endure symptoms ranging from depression and nausea to possible leukemia. Naturally, I wasn’t really interested in taking them. In my mind, since my M.S. was “fine”, it was an inconvenience to be bothered by any additional sickness. But this nurse wasn’t buying any of my bullshit. She kindly but firmly told me that I needed to take the medication since my disease was quite active and if I didn’t go on them, my MS not only could but would get worse in the future and could cause permanent damage. Further she also explained that the drugs were essentially preventative, they wouldn’t make my MS go away but they would ensure that my future self would be less likely to end up being dependent on a cane or a wheelchair. Essentially, I needed to go on them now to ensure a better future for myself. That’s some pretty abstract shit to wrap your head around – at any age. So I took the pamphlets she gave me, thanked her for her time, and made an appointment to see her in six months. And an hour later I burst into tears in conversation with my friend.
My point in all of this? “Denial” is more than a river in Egypt my friends (#badjoke). It’s a very powerful tool that we use to save ourselves from hardship and heartbreak. I don’t think I’ve necessarily been in denial since I was diagnosed at 18-years-old, but I don’t think I have ever truly made peace with my MS. I never made peace with the fact that MS is a bizarre disease that comes whenever it wants and does whatever it wants. The future of how my MS will progress is kind of unknown, and that’s scary as hell but it’s OK for me to be scared and it’s normal for me to cry. I always used to put a brave face on for fear of worrying those around me and I rarely spoke up when I desperately needed to rest. I always tried my damnedest to push through and ignore how crappy I felt but this nurse basically slapped me in the face with my body’s reality and I’m thankful to her for doing so.
My lesson (to myself and all of you reading): You don’t have to, fake it till you make it. You don’t have to say you’re “fine” when you’re really not. It’s OK to ask for help from those around you and it’s OK to help yourself by acknowledging your feelings and acknowledging what you are struggling with. Don’t wait until you get slapped in the face with a reality check 10 years down the line. Acknowledging your weaknesses or asking for help, is not a weakness – it’s a strength.
If you would like to find out more about Multiple Sclerosis, check out these helpful websites below: