MS Awareness Month – March 2022

March is MS Awareness month, and every year I ponder if/what to share about the experience of living with a chronic illness, specifically MS.

I invite you to spend a moment with me as I share how MS impacts my life, and work, and what I do to “keep myself in the game”! My disclaimer is this: – MS impacts everyone differently – what I write here is my experience – I do not speak for anyone else.

I have “relapsing-remitting MS” – this means there are periods when my disease state is very stable(remission), and periods where it is active and unstable(relapse). MS is an autoimmune condition, where my immune system is attacking the myelin sheath which surrounds my nerves. (Think of the rubber sheath around electric cables). So, all through my brain and nervous system I have “wounds” on this casing which causes the nerves to sometimes be hypersensitive, and sometimes desensitized. These wounds aren’t constantly active – it’s like any wound – it’s inflamed for a while when it is new, and then over time it heals, and I have a scab and then a scar. (Multiple Sclerosis literally means “many scars”) 

The number one symptom that I currently deal with is fatigue. MS fatigue is different from the normal fatigue that everyone experiences after a long day or after a physically/mentally/emotionally draining activity.

Messages are constantly sent to and from the brain through the nervous system to keep every function of the body going – you breathe, you think, you adjust your body if something hurts, etc. The messages that flow in my central nervous system keep hitting speed bumps and roadblocks (the wounds and scars) as they travel to and from their intended destination. As a result, they either must find a new route around the scar and take a lengthy detour, or they must work harder to get through this bumpy area. Before I have started anything physical or cognitive my body/mind is already tired. It also takes me longer to recover (I just don’t wake up refreshed the next day).  As my fatigue increases, my ability to concentrate diminishes, and my sensitivity to noise, unexpected touch, plans changing, etc increases. I actively work to manage this by sleeping well, eating nutrient dense food that supports my body/mind, and NOT putting myself into a situation where I am going to be “too taxed.” The consequences of “pushing through” are not being able to walk or being stuck in bed for a week while my body tries to recover – it’s a high price to pay for not listening to my body or taking care of myself.

A physical example of this is going for a walk. If I go for a brisk walk without any aids (cane/grocery cart/arm of someone) after 7 minutes I will start to lose my vision. I will then need to sit for 10-15 minutes and rest until my vision returns. Next, I need to get home asap, take it easy for the rest of that day and maybe the next. If I have a grocery cart or my walking sticks to assist, I can typically go a bit further, (like 15 minutes). This takes having a physical job off the table.

My job is not physically taxing, I do bookkeeping work and I sit at a desk.  It is highly cognitive though which requires attention to detail, and the ability to communicate with others. Reading, math, accuracy, and other cognitive functions keep multitudes of nerves firing in the brain – my brain is full of scars, so these activities are more tiring to me than they used to be. There are times when I can not focus, when I will not have the strength to pull my brain to a place where it can concentrate on what someone is telling me, or the calculations that I need to complete. There are often times when I can’t find the word I am looking for when I speak – it’s like in the middle of a sentence I will just hit a wall – or I will say a similar word but not the one I mean (which can be quite comical – like the time I wanted to say “tactile” and I said “tactical” – very different meanings when substituted into the same sentence).  Getting interrupted can completely derail me, I will forget what I was talking about and what I was planning to say next. To function at my best and do an excellent job, working 40 hours a week is not possible. This means I need to find an employer who can accommodate my disability, and who can see the value that I bring to the organization and who is willing to work with me to realize that full value within the constraints that are my reality.

The last relapse (new disease activity/wounds) I had was in the summer of 2020 after being unable to access my monthly massage due to the covid lockdowns. I require and rely on massage and other treatments to stay mobile!

Was it a bad relapse – NO – I was not hospitalized; I did not need to have a round of steroids although it was offered.  Was it a bad relapse – YES – I was bedridden 5 out of 7 days a week, I started to experience a new symptom called “trigeminal neuralgia” which for me felt like someone pushing a very cold rock into the left side of my face at random intervals throughout the day.  It was more frequent in the late afternoon and evening when it could occur up to every 3 minutes over the course of several hours. It could have been a lot worse. These symptoms persisted for about 6 weeks.

It took months to heal from this relapse. Physical recovery included a lot of time in bed, heavy duty herbal anti-inflammatories($$$), 8 weeks of massage and chiropractor treatments($$$), getting a chair to use in the shower, and needing more help from my family around the house. Emotional recovery included working through fears like: “Will I recover this time?” “Is this the one that’s going to land me in a wheelchair full time?”  “Am I going to need help to shower and wash my hair?”  “Will I feel tired forever?”  “Am I going to lose my job?”  “Am I going to lose my friends?”  “When will the next one hit?”

I am VERY happy to be on the other side of this relapse, and I do my best to take one day at a time and trust that I will have the capacity to deal with whatever the future holds when it becomes the present.  Some days I rock at this…some days not so much!

One topic frequently discussed within MS communities is whether to disclose to your condition to your employer. Sadly, the experience of the majority has been a lack of understanding, ridicule, and ultimately loss of employment after receiving their diagnosis, or disclosing their condition at their workplace. Thankfully that has NOT been my experience and I consider myself blessed to have employers who I can be honest with and coworkers who are patient. 

#MSAwarenessmonth #chronicillness

1 comment March 31, 2022