November 25, 2015: The day before Thanksgiving. The day before one spent with family. The day two little letters changed my life.
The letters were M and S.
I had known that it was a possibility for the past year and a half when I first started having neurological symptoms, but somehow I had convinced myself that MS wasn’t me. I wasn’t MS. I was strong and relatively healthy. I was active and loved to put my body to work on a project. I was resilient and people like me did not get MS. Yet, there I sat as the neurologist told me the news. I heard it in his voice before he even said the letters. M and S. I had MS.
I sighed audibly as the weight of the news washed over me. Various thoughts, all jumbled together and not making any sense, swam through through my head, my head that I now knew contained lesions. My poor brain would never be the same. That was honestly one of my first thoughts. No wonder I had been having trouble concentrating and multi-tasking over the past few weeks. I was angry and sad and determined all at the same time. I tried to shift gears and give some sort of response but the next wave of thoughts came rushing in and I was speechless.
I thought about all of the times over the previous year that everyone had said not to worry or that everything was going to work out or that I was just worrying about things I had no control over. I got angry then panicked for a few seconds and felt a tear run down my cheek. I heard my husband come up the stairs and sit quietly on the bed beside me. I tried to listen to the words that my doctor said for a few more seconds but the adrenaline kicked in and I started thinking about treatment. I interrupted him and asked what I needed to do. He said that I needed to enjoy Thanksgiving with my family and that I would start home infusions for steroid treatment the following week. I was in a major relapse and because it was in my brain this time, it was much more impactful.
As the time passes and I become more comfortable with my diagnosis, I’ve come to understand that most people are afraid to think about the unknown or what bad things might possibly come to pass. They tell themselves (and others) that everything will be alright or that it will all work out because that’s their coping mechanism. It isn’t alright though and it hasn’t all worked out but that’s OK with me. Unlike most people I know, I operate on facts and statistics. I want percentages and ratios and real life case studies. I want clinical trials and scholarly articles about new drugs or treatments.
I’ve spent the last 6 months reading everything about MS that I can get my hands on and although I’ve been cautioned about reading too much and scaring myself, I have no plans to stop. Knowledge gives me comfort. It doesn’t scare me. If I know the worst I cannot be surprised. Even though my days are more often than not pretty challenging, I know that I’ve been lucky so far. I know that it can (and probably will) get worse. It scares me but it also brings me comfort to know that there will be no surprises.
These are MY facts. I hope that by sharing them with others, they will realize that while well wishes and a positive attitude can certainly make life easier, they will not cure my MS or reduce the severity of the symptoms that I experience.
- It’s been 6 months since my diagnosis and I am not the same person I was 6 months ago but I continue to make strides towards recovery each day.
- I take a handful of vitamins and medications in the morning and another in the evening, most of which have side effects, all of which are vital to my individual treatment plan.
- I suffer from mental and physical fatigue on a daily basis. Sometimes it’s so bad that I get confused and/or have trouble walking. It affects my ability to produce at work as well as my quality of life.
- I have trouble with my short term memory and forget lots of things that people tell me. I write everything down and set reminders for every little thing in my phone.
- I take an immunosuppressant to help control my disease. Not only does it make me super susceptible to illnesses and infections, but the side effects have caused my resting body temperature to increase quite dramatically. I experience hot flashes that come out of nowhere and leave me hot, sweaty, itchy, and red.
- I suffer from cognitive deficits as a result of the damage to the nerves in my brain. While I was once a multitasking pro, I now struggle to stay on task and finish things. I cannot handle lots of things at the same time. I often forget words. Simple words like “restaurant” or “car” can leave me for hours or days and I have to choose other words instead. I also sometimes forget which order the letters in a word go.
- I suffer from slight foot drop, which means that my foot doesn’t always want to lift itself all the way back up when I take a step. It creates a little bit of a drag and means that I trip often if I’m not paying attention to what my feet are doing. It gets worse if I don’t get 8 or 9 hours of sleep at night.
- I forget how to work simple things such as my stove or the radio in my car. I forget which side of the faucet is hot and which is cold. I forget how to to do things on my phone or the computer. Our brains have performed certain tasks so many times that they perform them on autopilot to save brainpower. Sometimes the autopilot in my brain gets stuck and I’m halfway home from work and have no idea where I am or how to get home for a few seconds.
- I experience vertigo on a daily basis. Sometimes it lasts for a few seconds. Sometimes it lasts all day. It makes it tough to walk straight and or keep my balance and sometimes even makes me sick to my stomach. When it happens in the car, I often have difficulty telling whether or not I’m completely stopped at a stoplight or sign because it feels like the car is still moving.
- I have a totally numb and very weak right hand as a result of damage at my spinal cord level. Typing is a challenge and writing for any period of time requires the use of a special pen to reduce hand fatigue and cramping.
- My legs get easily fatigued and if I don’t take frequent breaks while walking long distances, they become weak and unreliable. I carry a cane with me in my car at all times just in case.
The list of symptoms that I experience changes from day to day. I don’t mention them to most people (1) because they probably wouldn’t understand them or the extent and (2) because complaining isn’t something that I do. I’m a doer. I take things as they come and I deal with them, regardless of how I feel about them. That’s part of the reason that I wanted to start this blog. I’m so busy juggling work, doctor’s appointments, insurance, hospital bills, rx prior authorizations, symptoms, life, etc. that I forget to stop and think about how I feel.
I have always been better at expressing my thoughts and feelings through writing vs speech so this is an opportunity for me to do so. I hope to provide a little bit of insight for my family and friends, but also maybe to a stranger or two. Please don’t be afraid to ask questions or make comments. I didn’t know anything about MS until it happened to me so I don’t expect anyone else to know about it either. One thing I would encourage you to keep in mind though is that every case of MS is different. What your friend or neighbor or cousin with MS experiences isn’t what everyone with MS experiences. We are all truly unique. 🔸🔷🔸