Twenty Years After the Diagnosis

From an episode four years ago:
It’s been a really rough period – especially with the dizziness and imbalance, as I often describe it to folks – my brain feels like someone is using an electric eraser on it … but the steroids are finally starting to kick in and I’ve been getting a lot of rest. I did force myself to get up and do yoga stretches and take a walk yesterday to start helping to recalibrate my brain/equilibrium … really challenging, but will be much better in the long run. I also put on my grandmother’s pearls and painted my nails and took a bubble bath … you know, anything to make me feel not so yuck – as my face has developed huge welts of acne from the steroids etc … yup, it’s like that. I’m going to spend another week resting and doing physical therapy and am truly praying and trusting the universe to take care of me and restore my health and sense of wellbeing.

Most people have heard of MS and associate it with a progressive loss of motor skills, such as losing the ability to walk. That is one course the disease can take. However, it’s far more complicated, with many varying and unpredictable symptoms. This is the description from the Mayo Clinic’s website:

 Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system).

 In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.

 Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms.

 There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms.

I was diagnosed with the disease 20 years ago and have the most common course: remitting/relapsing, described by the Mayo Clinic as follows:

 Most people with MS have a relapsing-remitting disease course. They experience periods of new symptoms or relapses that develop over days or weeks and usually improve partially or completely. These relapses are followed by quiet periods of disease remission that can last months or even years.

 As clinical descriptions go, this is accurate and provides a general sense of the disease. However, in no way does it capture the experience of living with MS. These are few examples of my experiences with the disease from journal entries over the years:

 2006

I've been experiencing a somewhat mild MS (multiple sclerosis) relapse. My feet have had the sensation of being numb and sometimes cold for the past month. Recently it's been worse on my left side - the heel and ball of my foot feel like I'm standing on two wooden pegs and the sensation of numbness is crawling up my leg, first my calf, then knee and now thigh. There's also the general feeling of just being off, fatigued, and not quite right, which as I've learned over the past 6 years (since the first attack) is impossible to truly or accurately describe to someone without the ailment - because I'd never experienced anything like it previously. I've been quite lucky in that my experience with the disease so far has been generally mild - odd unpredictable sensations periodically, sometimes my eyes hurt with sharp pains, but most and worst of all are the times that I feel so overtaken with fatigue (again, this is fatigue like I'd never experienced previously so I often find it irksome when I get the response from someone of "yeah, I'm really tired too" - they honestly have no idea, though I know they don't realize this) and my head feels "off," which I then remind myself that it is brain damage, so I suppose that makes sense. But I'm also quick to remind myself that the brain is phenomenal at healing itself. There have also been lapses of time when I've almost forgotten that I even have this disease because I feel great and have no symptoms.

2008

My feet feel like paws - hard, lined, and crinkly - like big bear paws that have been walking on pine needles and rocks. I know, sounds bizarre, but 'tis true. I'm fascinated by the fact that the brain has such sensations somewhere in its memory - whether ever experienced or not. My left leg still feels weak and numb, yet it's not - it feels like the opposite of a ghost leg (a ghost leg feels like it's there, yet it's not and can't function) - it feels as though I don't have a leg there, yet it's fully functional

2017

My head feels like someone is using and electric eraser on it while I’m under water.

In the hospital in 2015

In addition to the strange sensations, fatigue, and brain fog, there have been episodes in which I’ve had to be admitted to the hospital and have lost partial sight and/or hearing for months or years at a time. It can be terrifying not knowing if the disease will progress or not.

Yet, there have also been long periods with little consequence, other than the fatigue and brain fog, which are always present and have come to be my baseline. Life is like that; what once seemed unthinkable or unbearable has become normal and workable, or rather, I just power through. It becomes a survival skill, not wanting to let on how much of a struggle living with this disease can be at times, especially when it’s not readily visible – I’m not in a wheelchair or in need of a cane. Even when I lost partial sight in my right eye for four years, I rarely let on how incredibly frustrating it was. There are many reasons for this lack of divulgence, but primarily it’s about not wanting to concern anyone with a situation in which there is no answer. And that’s not unique to living with a chronic disease. Aging is challenging, but none of us ever gets younger; there are people who have passed, and I miss dearly, but they’re not coming back. We learn to adapt. That might sound a bit flippant, it’s not meant to be; rather, it’s at the core of what it means to be alive and to understand that everything changes, nothing stays the same. Not that I’ve reached some place of transcendence. I hate waking up exhausted or feeling like I’m under water and someone is using an electric eraser on my brain. But obsessing on it feels worse; and there is some satisfaction in knowing that I’m still powering through with hard, lined, crinkly bear paws.