The Two Words that Changed Everything (and Ruined My Mat Leave)
It was about 3 am when I was woken up by my 5-month old’s crying—time for another feed. But something was different—I had a headache, which was unusual for me, and it was intensely throbbing above my left eyebrow. That alone wasn’t the sole cause of my concern; part of my vision was impaired. A quarter of my sight in my left eye was distorted as if I was looking through a screen. I told myself it was late, I was half asleep, and it would be gone by morning.
Morning came, but no change—the headache was intense and not budging from its spot above my eyebrow. It was unlike anything I had experienced before and I was starting to freak out. I mentioned it to my husband—the most chill, laid-back person I have ever met—expecting to hear a customary ‘sounds like nothing’. I didn’t get it, and his concern and curiosity turned my nerves into full panic.
I set an appointment with my GP, and after an examination I heard the words from a doctor for the first time: ‘Multiple Sclerosis’. That memory will be forever in my mind as if it was yesterday. I had many more appointments ahead of me before anything could be confirmed, but now I knew I wasn’t being paranoid. Something was very wrong.
The next appointment was with my optometrist because a less likely possibility was that I had a brain tumor and we needed to rule that out. Optometrists can sometimes see brain tumors with their equipment and there was a chance that a tumour could be causing the changes in my vision and the headache. He was very matter of fact when he delivered the news: ‘There is nothing wrong with your eye. Your either have a brain tumor that I can’t see, or MS.’ The panic had turned into pure despair. My husband was on his way to pick me up from my appointment and he had our infant son with him. As I waited for them, I called my twin sister who was anxiously sitting by her phone waiting for an update. I could barely get the words out…I was sobbing…I was terrified.
My husband arrived and I got into the back seat beside my young son, my custom since the day we brought him home from the hospital. I couldn’t look at him. My beautiful little boy that I tried so hard to bring into this world! All I could think of was that he did not deserve to have a sick mom.
Now it was time for the big guns: an appointment with a neurologist at St. Mike’s downtown. By the time I went to see him, my headache was gone and I had gotten used to my vision being distorted. The holidays were coming up and there was no way I was going to let anything get in the way of my son having an amazing first Christmas. The neurologist examined me, asked me a bunch of questions and at the end he told me that he suspected it was an a-typical migraine. OH JOY! All this fuss, the worry, the tears! Of course it was a headache! I just given birth and my hormones must be all out of whack! Besides that, everyone knows that MS causes you to go numb, and I had pain. Beautiful pain!
I was scheduled for an MRI and I would see him again in the New Year, but now I was convinced that this was just a headache and I skipped out of that hospital! I went home and had the best Christmas with my family. When the time came to go back to St. Mike’s, I decided to go to the appointment alone. My husband really thought he should be there but someone needed to stay with our son (and there was no way that I was about to bring my baby to a germ-filled hospital!). And besides, for what reason? I had a headache!
I walked into my appointment feeling confident and not nervous at all. I sat down only to hear those words again, now from a specialist holding scans of my brain. It was confirmed, I had Multiple Sclerosis. I called my husband, crying now. ‘It’s MS’. Without a moment’s hesitation, in a calm, reassuring voice, he responded, ‘I will take care of you.’
I was sent home with a handful of brochures about what I could expect, and the treatment options, all of which sucked. Want to know how to be even more depressed after a life-altering diagnosis? Pick up some brochures on your way out of the hospital.
The worst part for me was not even the thought that I might be in a wheelchair, it was the fact that I might become incontinent. I am a fiercely independent person and this was something that I just could not handle. Over the next few weeks, I was lost. I was so angry. I was on mat leave! This has ruined what should be the happiest time of my life. I really tried to be positive and not to think about it, but it was there in the background all the time.
Over time, I got used to the idea…I had to. I had to plan and make sure that I was healthy for my boy. We had scheduled an appointment with a nurse to teach my husband and me how to administer the MS medication via a weekly injection. The nurse came to our house and began to go over how to do the injection, and what side effects I could expect. She let us know that there would be flu-like symptoms for a few days after each shot, so we should administer the shot on Friday nights so that the side-effects wouldn’t affect our work lives. Seriously? Something came over me in that moment. The best way I can explain it is that I suddenly and resolutely made up my mind. Not me. This wasn’t going to be my life. I left the table while my husband continued to listen to the nurse’s instructions and I went over to my son and played with him. I just didn’t want to hear anymore. Like a switch had been flicked—my mindset had changed.
I never took the medication. I went to see a nutritionist and began to research treating my MS holistically. I don’t believe that medication is unnecessary—sometimes it is very necessary—but I knew that the choice I was being offered was not for me. I was determined to fight and to manage my condition—and I did. It was going so well that eventually my husband and I made the decision to have another baby. This is a massive decision for anyone but it was especially difficult because of my diagnosis. I decided that I just had to live my life according to what I wanted and I didn’t want MS to dictate the way I lived it.
Two years later, we welcomed a beautiful little girl and I can’t believe that I almost did not have her! She is my son’s best friend and the best gift I could have given him. Now, my two children are the motivation behind my continued study of nutrition and well-being.
As of one year ago, my MS is in complete remission. I made the decision that this was not going to interfere with my life or my plans. I have a husband who was beyond supportive. He never let me succumb to despair. He never treated me differently or let me feel sorry for myself or let me get away with any crap. His initial response, ‘I will take care of you’, gave me strength then and still gives me strength now. I know he always has my back.
MS has given me a lot more than it has taken. My outlook on life is different and I now have the ability to actually help people with all different kinds of health issues. But I know that I am one of the lucky ones—there are so many people fighting auto-immune diseases that are struggling daily with symptoms and attacks. People who also take care of themselves and who have families that love and support them. So I walk the MS Walk every year with my family to raise money and awareness to help fight against MS. Hopefully my story will help and inspire someone who is fighting MS or has a loved one who is.