You are not Always in Control

“You will heal. When you are ready to, not when they say you should.” – S.L Gray

The best laid plans don’t always turn out as you expect them too. For the past two years, I have lived in a state of fear about catching covid. I overcame that fear and travelled to the east coast of Canada last fall to try to search for some normalcy. I travelled all of those kilometers and didn’t get sick. However, staying at home and isolating over the winter, somehow covid still managed to sneak its way through.

There are some things in life you just can’t prepare for. I was prepared for issues with my lungs seeing as I have asthma as well as MS. However, that is not what I am struggling with the most right now. It is the unknown. We turn to doctors when we want to know what is going on with our health and what to do to get better. This has not been the case with me contracting covid and secondary pneumonia. All that I can do in these situations, is document what I am going through which may in turn, be helpful to others who are searching for a light at the end of the tunnel.

Here is my covid journey. On February 17th, I started to feel symptoms of a cold. Wheezy chest, extreme fatigue, and sore muscles. I just assumed it was an asthma like cold. I was fortunate enough to have some rapid tests at home. I took one and it came back negative. I just happened to speak to a friend of mine that night who is also a nurse. She recommended seeing as I am one of the few people in my province who would qualify for a PCR test, seeing as I am on an MS drug called Ocrevus, that I phone and book one just is case. I booked one online for 10:00 the next morning. I felt worse in the morning so went to have the test done. In the middle of the night, I received a text saying that I had tested positive and should contact our health authority to get set up with antivirals. I was in crazy shock about how I could have gotten it with how isolated I have been. The only place I go is out to the dog park with my pup, Dax. However, I had a direction so I hopped on it. Contacted AHS about getting set up with Paxlovid, a five day course of antivirals.

I am an action person. If there is something I can “do”, I am in my comfort zone. I started on the meds and researched how they worked. My lungs cleared up relatively quickly so hopefully I will not have any lingering affects to my respiratory system. However, after talking to my doctors, they recommended I start on a 10 day steroid dose to try to help even more. That brings me to the land I am living in now. Lungs are clear, brain is definitely not.

I have lived with MS for the last 22 years. Almost half my life already. However, through doing and actively putting pieces in place, the neurological issues are something I have kept well at bay for the last 10 years. I feel like MS has two parts to it. The body aspect, balance issues, strength loss, and pain are my normal symptoms. However, there is another part of the MS monster that I am way less comfortable with in my life. This infection has definitely stirred that up. I am so tired. I wake up at 10:00 in the morning which throws my whole day off. My mornings are sacred to me but I am now missing them. I constantly feel like I am walking on a boat. My brain feels disconnected from the rest of my body. i cannot handle any extraneous noise. I crave conversation but can only focus on them for a short period of time. My entire body is tingling 24 hours a day which is constant reminder that something is wrong in my system. The fear I have is that this will become my new normal. My brain in my favourite muscle in my body. I love feeling smart and insightful. That is how I like to identify. However right now, I feel like I am stuck in jelly. Floundering to express myself. The other day, I went to see my doctor who put me on a medication that is normally used for narcolepsy. What? That seems crazy to me, but apparently it may give me a bit of energy to function. I normally try to stay away from meds, but I am willing to try it if it may help. I am also being sent for an MRI to make sure that all that is going on is long covid and not MS activity.

The frustrating part is that no one really knows what will happen. Will this cause long term effects for me? Will it change the course of my MS progression? Will my brain be able to get back to where it was before?

What do I know? I am truly humbled by this experience. I have never been so truly controlled by what my brain and body are willing to allow me to do. I am grateful for all of the love and support I have around me. So many people have stepped up to help. Whether it be bringing me meals, calling to check in, offering their strength when I don’t feel I have any. When I look at what I always wanted to create with this blog, the MS community and the created community I surround myself with, it is exactly this. Helping others to achieve their most. I can only hope that when I move out of this phase, I can get back to helping others on their journey, fuzzy-brained or clear as a bell.

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