Life with Multiple Sclerosis ( MS) : World MS Day 2017
Today is World MS Day, a day recognized on the last Wednesday in May in order to raise awareness of Multiple Sclerosis: the people it impacts and the realities we face. Multiple Sclerosis (MS) is a neurodegenerative, autoimmune disease, that affects 2.3 million people worldwide and has no cure. Though the number of treatment options is growing, there is no cure and the majority of treatments do not impact symptoms directly. Every person with MS experiences their own unique set of symptoms and challenges, making treatment plans complicated and individualistic.
Multiple Sclerosis Defined:
mul·ti·ple scle·ro·sis ˈməltəpəl ˌskləˈrōsəs/ noun a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.
This year’s World MS Day theme is “Life with MS”. What is life with MS? what does that technical stuff I just wrote really mean? How do those words above translate to the day to day life of someone with the disease? Honestly? It’s hard to say what ‘Life with MS’ really means. It’s different for everyone. MS is sometimes referred to as a snowflake disease for that very reason. No one experiences MS in the same way. Some people never get optic neuritis and others feel plagued by it. It’s individual.
That said, the list of symptoms your body has to play with is long and frustrating and their manifestation is as unpredictable as the course of any one person’s disease.
Symptoms of Multiple Sclerosis (Via The National MS Society) :
Fatigue – Occurs in about 80% of people, can significantly interfere with the ability to function at home and work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.
Walking (Gait) Difficulties – Related to several factors including weakness, spasticity, loss of balance, sensory deficit and fatigue, and can be helped by physical therapy, assistivetherapy and medications.
Numbness or Tingling – Numbness of the face, body, or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed as having MS.
Spasticity – Refers to feelings of stiffness and a wide range of involuntary muscle spasms; can occur in any limb, but it is much more common in the legs.
Weakness – Weakness in MS, which results from deconditioning of unused muscles or damage to nerves that stimulate muscles, can be managed with rehabilitation strategies and the use of mobility aids and other assistive devices.
Vision Problems – The first symptom of MS for many people. Onset of blurred vision, poor contrast or color vision, and pain on eye movement can be frightening — and should be evaluated promptly.
Dizziness and Vertigo – People with MS may feel off balance or lightheaded, or — much less often — have the sensation that they or their surroundings are spinning (vertigo).
Bladder Problems – Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully with medications, fluid management, and intermittent self-catheterization.
Sexual Problems – Very common in the general population including people with MS. Sexual responses can be affected by damage in the central nervous system, as well by symptoms such as fatigue and spasticity, and by psychological factors.
Bowel Problems – Constipation is a particular concern among people with MS, as is loss of control of the bowels. Bowel issues can typically be managed through diet, adequate fluid intake, physical activity and medication.
Pain – Pain syndromes are common in MS. In one study, 55% of people with MS had “clinically significant pain” at some time, and almost half had chronic pain.
Cognitive Changes – Refers to a range of high-level brain functions affected in more than 50% of people with MS, including the ability to process incoming information, learn and remember new information, organize and problem-solve, focus attention and accurately perceive the environment.
Emotional Changes – Can be a reaction to the stresses of living with MS as well as the result of neurologic and immune changes. Significant depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families.
Depression – Studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population or in persons with many other chronic, disabling conditions.
Speech Problems – Speech problems, including slurring (dysarthria) and loss of volume (dysphonia) occur in approximately 25-40% of people with MS, particularly later in the disease course and during periods of extreme fatigue. Stuttering is occasionally reported as well.
Swallowing Problems Swallowing problems — referred to as dysphagia — result from damage to the nerves controlling the many small muscles in the mouth and throat.
Tremor– or uncontrollable shaking, can occur in various parts of the body because of damaged areas along the complex nerve pathways that are responsible for coordination of movements.
Seizures – which are the result of abnormal electrical discharges in an injured or scarred area of the brain — have been estimated to occur in 2-5% people with MS, compared to the estimated 3% of the general population.
Breathing Problems Respiration problems occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles.
Itching Pruritis (itching) is one of the family of abnormal sensations — such as “pins and needles” and burning, stabbing or tearing pains — which may be experienced by people with MS.
Headache Although a headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache
Hearing Loss About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease.
That’s a lot of stuff, but it doesn’t really explain life with MS, does it? Lets put it this way: MS is a like a demon laying in wait. It will take any opportunity to present itself, do a number on your body and leave you worse off for it, how much worse depends on the type of MS you have and well… what the universe decides that day. Some of the damage is permanent and some go away and come back at random. A daily game of Russian Roulette is a decent metaphor too.
I can never truly explain what Life with MS means. What I can do is SHOW you what one fairly ‘normal’ day with MS is, or was, for me.
On May 25, 2016, I decided to document every time I found myself struggling with MS throughout my day. I signified these moments with a photograph and the placement of an MS awareness sticker provided by Shift.ms (an amazing organization!). This is the outcome.
The Context:
Environment (weather) often contributes to worsening MS symptoms so It’s important I tell you the day was hot as hell, super humid, and generally what those of us with multiple sclerosis would consider a flare inspiring day. I had no food for my tortoise and I since I have yet to discover how to control the weather, I went about my day despite the heat, in the careful and cautious way you do when you aren’t feeling right and don’t want to draw the attention of the MS demons lying in wait.
(Video & Slide Show to come)
Each of these photos captured a moment where I found myself struggling with symptoms (new, heat inspired, and those that are permanent fixtures in my life) and issues created by multiple sclerosis. These symptoms and struggles are typical to a day in my #LifeWithMS.
Every day brings new and old challenges to the forefront that I stop and deal with and move forward. That is the key.
After 7 years I can’t say the fight is getting easier, I can’t pretend I’m used to it or forget about it or found its purpose in my life. Life with MS still sucks and I’m betting it always will. I can say, however, that I’ve learned a thing or two about dealing with the day to day, about myself and how to cope. With that in mind, I’ll offer you a tip on how to deal with #lifewithMS.
Know that you are moving forward.
People often talk about keeping positive, smiling through the pain, chin up and all that. I sometimes feel the real message is lost in those statements. My tip for anyone struggling with MS, or any disease like, it is to remember you’re moving forward. No matter what, you are. It’s a fact. Time moves on and you’re going with it. So remember to feel your feelings, anger, pain, frustration and sadness are all parts of our reality, but so are joy, happiness, gratitude and love.
Keeping positive is never forgetting that you are moving forward while experiencing any or all of the aforementioned emotions. You don’t have to smile all the time, you don’t have to claim everything is fine, you just have to know that in the end, you’re moving forward and tomorrow is another day. That’s the tip:
Feel, Deal, and Move Forward.
You’re winning because you’re living even when it feels like you’re moving backward with every breath. It’s an abstract thought that might seem someone useless but if you let it live in the back of your mind it might just help you through those particularly terrible moments. I might also add, as I learned from this photo project, take the time to look at a day in your life, all the moments MS tried to stop you from moving forward, and be proud of yourself. You moved forward and MS couldn’t do anything about it.
Then give yourself a high five. You earned it.
ETA: The video describing the symptoms associated with each photo.
