Many people ask me to explain what Multiple Sclerosis is and how it affects me. I usually give them a quick answer that Multiple Sclerosis is a complex disease where the immune system attacks the central nervous system. That is MS in a “nutshell”.
I will try to expand on this answer to give you a better understanding.
Statistically, MS has been diagnosed in approximately 2.5 million people around the world. Canada is one of the countries high on the list of individuals with MS. There is no known cause of MS. There are a few theories such as lack of Vitamin D, the sunshine vitamin. It’s possible that MS is genetic as it often runs in families. It could be environmental. It could stem from a childhood illness that has laid dormant in the body and returns later in life in the form of MS. Lot’s of different ideas on MS roots.
I can tell you this….it is a frustrating, debilitating and painful medical disorder.
The one thing about MS that makes it so complex is that it is an attack on the brain and central nervous system (CNS) in each patient BUT it doesn’t affect two people in the same way. What is happening deep within the body of each MS patient is the same but the disease manifests differently in patients. The symptoms arise for each individual depending on where their sclerosis or scarring occurs on the CNS. These scars on the CNS short circuit the messages from the brain to the limbs and other parts of the body such as the bladder, digestive system, optic nerves etc.
There are a few different forms of Multiple Sclerosis. The first one is “Relapse Remitting MS” (RRMS) which involves attacks of the disease that cause temporary symptoms and remissions between attacks. Some people may have one attack and never have another. Others with this form have relapses that come and go often over their lifetime. The second type is “Primary Progressive MS” (PPMS). This form involves worsening of symptoms as time goes by. Symptoms come, gradually worsening over time and don’t go away. This is the form I have graduated to. Believe it or not….I had RRMS for years before I was finally diagnosed. I would run to the doctors with unusual symptoms that would come and go but I was never tested for MS as the symptoms would go away for long periods of time. I was accused of being neurotic, a hypochondriac, too much time on my hands etc. Imagine….thinking you were neurotic when in actual fact, you have a serious disease called Multiple Sclerosis. When I was finally diagnosed I was somewhat relieved to learn that I was NOT NEUROTIC…that I was actually complaining about legitimate symptoms. The third form of MS is called “Secondary Progressive MS” (SPMS) which is kind of like PPMS where symptoms increase and neurological function continues to decline.
There is no cure for MS as of yet. Scientists and medical professionals are working hard to try and find a cure but as of this point there is no solution. There are disease modifying drugs that one can take in the early stages of the disease that can possibly hold some symptoms at bay. There are no drugs for the stage of MS that I am experiencing. Although so much research is being done to find an effective treatment for Progressive MS so I remain hopeful.
My challenges have become many. I am struggling to stay “upright”. I can stand and step enough right now to still make simple meals in my kitchen. My energy levels are in the basement. So, I tend to do my food prep for dinner in the morning when my energy is best. I have a stool on wheels that I rely on to work in my kitchen most of the time. I use a scooter outside of home when going to the grocery store or the movies etc. I have pretty well lost my I independence when it comes to going to the grocery store. My sweetie has to come with me to the market now as I cannot push the cart, carry the bags to the car or unload the bags from the car at home and get them into the kitchen. I rely on Paul for help in this regard. This is a very difficult reality as I use to love grocery shopping and cooking. Now it is a “burden” much to my dismay. One bright light in my MS, if you can find a bright light in having MS, is that I don’t suffer any pain. Not now and hopefully never. I know there are many people with MS who suffer from body pain, headaches etc. I think my clean diet and no alcohol lifestyle may be helping to keep inflammation down in my body and keeping pain away.
I rely on Paul for housework, bedmaking, laundry, walking the dogs, cleaning up after meals etc. I’ve pretty much lost most of my “day to day” abilities.
It is a very devastating change to go from a fit, jogger, weight lifter, golfer, entertainer, cook and fun companion to a “sit on my behind”, sedentary, fatigued and very frustrated person. On the surface, I look healthy. I appear to be pretty normal other than I am unable to walk more than a few steps.
Having said that…I’m still happy, grateful, hopeful and accepting of my situation. If I were to wallow in my limitations and frustrations I’d be miserable. It’s too exhausting to be miserable. I have taken stock of my positives and negatives. I have so much to be grateful for. People say to me “how can you be so cheerful” and I say “I don’t like the alternative”.