MSguided Bits

I began my life being called Elizabeth. When I was a baby, my toddler brother could not pronounce the complicated name my parents chose. It came out “little bit.” At five, being called Little Bits, Elizabeth, Bits, Bitties, Little Bitty Bot, Little Bibby Pie, and Infrabit daily, I finally confronted my mother and asked her, “What is my name? Jonny’s name is Jonny, Jimmy’s name is Jimmy, who am I?” She told me that my name is Elizabeth Rhianna, and all the rest are nicknames. I said I wanted to be called Rhianna because it sounded like a princess name. After that she always called me Rhianna, but I still was called every variation of Bits under the sun. I go by Elizabeth now, but I don’t care what people call me. I want them to have their preference rather than mine, so you can call me any of the above; just don’t call me Liz.

I have been living with the chronic disease of Multiple Sclerosis for 15 years. I was diagnosed right after I turned 20, but I experienced symptoms in my early teens. The process of Multiple Sclerosis is autoimmune system gone awry. I call it a process because that process usually has begun long before diagnosis, the immune systems T and B cells becoming misguided and attacking the fatty insulation that coats the nerves of our brain and spinal column. That coating, the myelin sheath, surrounds the nerves in much the same way rubber and plastic coats the wires that charge our phones. When the myelin sheath is worn away, the signals no longer work as they are supposed to, which leads to a wide variety of neurological misfirings. No one person’s MS is exactly like another person’s; everyone gets a custom brand of MS just for them. MS is a unique process which is one of the reasons doctors struggle to understand how it happens and how to best treat each person’s illness. The first line of treatments for MS are Disease Modifying Treatments, or DMTs. Often there is a process of trying a DMT, if a person has a relapse it’s ineffective and treatment is altered , if the disease remains in remission usually it’s recommend that the person stay on their prescribed treatment . The process of the disease I am describing is the one I have, Relapsing Remitting Multiple Sclerosis, RRMS. This is a process of disease activity with new symptoms occurring or old systems worsening (a relapse) followed by the immune system calming down and all or some of your symptoms going away, or going partially away (remission).

The are three other types of MS, Clinically Isolated Syndrome (CIS), Primary Progressive MS (PPMS), and Secondary Progressive MS (SPMS).

Clinically Isolated Syndrome  occurs when there is one episode of inflammation or demyelination in which symptoms last 24 to 48 hours. If a MRI detects a brain or spine lesion there is an increased  chance that it will progress to RRMS in the course of a few years. If there are no lesions detected the likelihood is reduced.

Primary Progressive MS is the most aggressive form.  Instead of relapses and remissions, there is a steady progression of lesions, demyelination, and disability.  That doesn’t mean people need to give into a slow inevitable decline. The first woman I met with MS, after my diagnosis, had PPMS and though she had lost the use of her legs and was in a wheelchair, she went to the pool several times a week to swim and the defined muscles of her arms showed her strength.

Secondary Progressive MS is the progressive form that frequently develops after a person has experienced  RRMS. There may be periods of relapse and inflammation with steady periods (of what) in between, or there may be gradual demyelination and decline in abilities.  I am still categorized by RRMS, but part of me has to wonder how long will I remain in this phase. I had to fight my way out of my bad relapse in my early 20s, and I never completely recovered.  With my most recent relapse, a lot of the problems I had experienced returned, along with a worsened gait, more fatigue, more cog fog ( cognitive problems), and tingles and numbness in legs, hands, feet and arms that doesn’t go away.  I am six months into this relapse and giving it everything I have.

What has helped me to start recovering from this relapse has been a shift of focus from the I, my MS, to the we, our MS.  I have been active on a chat app called MS Buddy since the start of my relapse in Oct 2018.  I have connected with such wonderful people going through similar disease processes; they are still functioning and living life.  Going through this together is so much easier than going it alone. However MSers invest time, money, and our oh so precious limited energy trying to find ways to help us function. It takes so much energy to find answers when the answers we get from our neurologist and our Disease Modifying Therapies aren’t enough to manage our symptoms. If we have a network of others to draw information and advice from, we don’t have to try to do it all on our own.

Alone we are defenseless against this disease, but coming together we can share the therapies, alternative medicines, treatments, diets, exercises and anything else that can help us through this.  I’m an ambassador for MS Buddy.  If you need some help there are three other ambassadors and a wonderful Guide named Kathy.  This app seriously saved me. Coming together is the only way to combat the crippling isolation that comes with Multiple Sclerosis.

Let’s trudge on, and not lose hope.  We can’t afford too. If we lose hope the encroaching forces of MS will win. We need to resit the despair that could lead us to giving up. At all costs we’ve got to avoid walking, or riding into that minefield of increasing disability- {shoot, that one took my left arm, that one blew out my right eye, shit, that one took out my belly button!}

My motivation for this blog is to share the knowledge I have gained, all the stuff that has worked and all the stuff that hasn’t over the last 15 years of struggling through.  I hope you find something of value here. I am not a medical professional, my BA is in social/cultural anthropology. The knowledge I have gained has been through research and trial and error.  If someone can find value in all this hell I have come through, the “Bits” of knowledge I have gleaned, then I can give all this meaning and purpose. So let’s begin…