RV4TheCause

Anniversaries
Nicole was diagnosed in March 2010. She’s almost at her two year anniversary. Many people with chronic illness count the anniversary dates of their diagnosis. “Pretty much everyone knows the day of their diagnosis. It’s the point in time of beginning a new type of life.” Nicole vividly remembers getting the phone call from her neurologist “I have your MRI results, I need you to go to the hospital now. It is MS. You’re in the middle of an exacerbation and you have to go to the hospital…” She didn’t even know what MS was.

The Toes Know
Numbness would come and go “…and I can deal with that.” Then it would come more frequently and with greater intensity. But with each downward tick she made a comparison to others and concluded “but at least…. And I can still…” She feels these comparisons, or what many call focusing good, is what keeps her going. “No matter how bad your day is you have to find the one good thing in it.” If you just focus on the negative it will break you down. “Squeezing my toes to just see if they are there.” But there are always so many suffering so much worse. “As bad as it may seem, I’m still ahead of it.”

The Invisible Illness Theme Song – “No One Understands”
The most frustrating thing is that few people “get it.” Most people look at her superficially and assume she’s fine. “Yeah, I’m tired too.” But Nicole may be at the point where she cannot function, could cry or vomit from the fatigue, and it is almost impossible to understand.

“While many don’t get it, many don’t want to. Try to sit on your foot for an hour, long after it falls asleep, then get up and try to walk on it. That’s how it feels for me to walk most days.”

It seems that so many facing the challenges of MS are frustrated when trying to explain the disabling fatigue to others, only to hear a comment back like “yeah, I was up late last night and am wasted too.” Few that haven’t experienced it, or seen MS fatigue in a loved one, understand the incomparability.
Harry Chapin’s Taxi
“Oh, I’ve got something inside me,
Not what my life’s about,…”

Nicole’s neurologist suggested that she start considering easing out of work. The stress, long days, and commute were having a negative impact on her and her symptoms have been increasing. The commute to work was getting to be too much of a challenge. The fatigue was getting so bad she would feel as if she couldn’t function. The walk from home to the train and the train to work “left my legs on fire.” And the same thing happened on the commute home. Walking through the streets of NYC and walking between trains. As her disease progressed Nicole began to use her “lunch break” as a rest break, in her firm’s infirmary. Then the trip home.

MS commonly affects a range of bodily functions and sensory perceptions. Bladder control is a common issue. Consider how just this one symptom can affect a commute. So commuting is pretty common, but try to follow what an “MS commute” can be. Nicole has to use the bathroom before leaving her office. Time her departure to get to the subway without having to run. Then when the subway arrives at the train station she has to find a train car that has a bathroom since she’ll have to use it two or three times on the way home. Then when she arrives at the station near her home she drives home, just in time to again use the bathroom. Now try to imagine the mental energy needed to just get to work and home from work. Apart from anything else, this alone was an tremendous energy drain. The “what-ifs” made what can be a typical NYC commute a constant stress.

The Future

As Nicole contemplates her next phase of her life, she may volunteer in a manner “where I feel I’m giving something back. Perhaps for the National Multiple Sclerosis Society. Helping people will put life in perspective for me. On days when I cannot feel my hands, or my feet, or both, giving back to those that are not nearly as fortunate as I am now, will keep my perspective. There is always someone battling more than I am. I hope that if I’m ever in the situation where I can no longer help others, perhaps someone will help me as I’m hoping to help others.”
The desire to give back and help those suffering in similar ways seems to be an integral part of human psyche. It is one of the key elements of Sean Penn’s stirring documentary “Love, Hate, Love.” Those struck by life’s challenges, whether health, terror or other, often find solace, meaning and perhaps a degree of healing, in trying to make a difference to others. It was the catalyst for this website and our efforts to create resources for those facing the challenges of chronic illness. It’s why this website was created.
Nicole also has been trying to post comments and thoughts on the internet to help others and build awareness. Below is one of Nicole’s first attempts at blogging about her experience:

I have started blogging, but have not made it public yet. However, I am posting this note, which describes various issues that people with Multiple Sclerosis live with and face daily. My hope is that it will help those of us fighting it understand what you are feeling is ‘normal’ in the MS world. I also hope it will help families and friends of people with MS understand what an average day is for most of us.
Multiple Sclerosis is one of the hardest neurological diseases to understand because it effects everyone differently and the symptoms can literally start out of nowhere. We could be feeling good and all of a sudden, in a matter of minutes, our bodies are completely out of whack.
Please take the time to read this, post comments, questions, suggestions, thoughts, anything you might not understand or ways to help. Also, please share this so more people can hopefully learn.
THE INVISIBLE DISEASE
“You look so good”. We MS’rs hear that often. I often call this the beautiful people’s disease. Because unless we are in a wheelchair, have an unusual gait, or need a cane, we DO look really good.
Underneath all of our natural beauty I can assure you that we have a neurological system that is ravaged. I can also assure you that we do everything we can to fit in when we are outside of our homes. We don’t wish to draw attention to ourselves physically. We get in enough trouble when our emotions run rampant in public that the last thing we want to do is stand out when our emotions are intact.
While it is great that we don’t have any outward abnormalities, I can assure that a person living with MS is struggling daily on the inside. We are trying to work with a body that will do everything in its power to work against us. All while trying to live our lives the way we did before MS. Multiple Sclerosis is definitely the master of tricking the naked eye to appear that everything is okay, when in reality it is by far, quite opposite.
FATIGUE
There are mornings that I wake up and feel like I haven’t really slept. We all have them. I think I have them more often than the average person. There are days I lay in bed with tears in my eyes wondering how I am going to get through the work day.
Fatigue is hard for others to understand because we do all get tired from time to time. How does this occasional tired become something that is disease driven?
Think about all the things an MS person has to do with an impaired brain/central nervous system. It requires much more work on the person’s part if the tools are not doing what they are supposed to do, right? With a faulty spinal cord I have to work harder to walk, balance, use my hands, control my bladder (yes your spinal cord controls that). It also causes huge sleep issues because the signal from my brain to my spinal cord that my body is tired and should sleep does not work properly. So regardless of how tired I may feel, my body can’t shut down. A person, like myself, battling optic neuritis has to struggle to see properly without straining the nerves to the point that they become inflamed.
With brain lesions people have to work harder to maintain balance, to navigate when they walk, to speak, to process the information they receive. It all takes a lot of work.
Many mornings, the sleep I had the night before just doesn’t restore all the energy that it took to get through the previous day. Fatigue can get so bad it will make people with MS nauseous because our bodies just don’t have the strength to do the things that should seem so simple.
MS fatigue is subtle and very hard to understand for those who haven’t experienced it. It is why some people with MS seem energetic and vibrant at one time, and are dragged out and exhausted at others, sometimes with very little time in between. It is why people with MS spend so much time resting and it is the primary reason why many people with MS can’t work. Some people with MS who are disabled would be able to do their jobs on Monday morning after a weekend of rest. They might be able to juggle multiple tasks, balance complicated checkbooks or even balance a fifty or even 100 lb. box. Yet if they persist in doing these things for any length of time, their abilities may disappear. For someone with MS, this kind of scenario can play out over the course of a week, a day, or even several hours. This fatigue is the most common cause of MS work disability. Sometimes the wearing out of neural connections does more than simply reduce one’s ability to move or balance. It can also cause an increase in numbness, muscle rigidity, spasms and even pain. Fatigue can also influence the thinking or cognitive ability of a person with MS.
Take for example, cleaning the house. In a state of fatigue, someone with MS may not be able to process whether the vacuuming or the dusting comes first, or remember whether it was the upstairs or downstairs toilet that was just cleaned. Such a state of fatigue can be produced by any number of things, from hard physical work — like cleaning the house — or from having to handle multiple sources of sensory stimulation — like being at a loud party with many people, or going shopping at the Mall. In other words, for many people with MS it doesn’t take any unusual cognitive or physical task to produce the kind of fatigue that is sufficiently debilitating to prevent them from adequately performing their job duties.
Equally important, coworkers, friends and families need to recognize that fatigue is not the result of laziness, willfulness, or moral turpitude. It is caused by a very nasty disease. This disease is often disabling. Sometimes the disability is caused by easy-to-see physical restrictions and sometimes the causes of disability are more subtle and insidious. For each person with MS the course of the disease and many of its specific symptoms will vary significantly. Some people have little cognitive difficulty, but great physical problems. Others have only fatigue as a symptom. Work disability can, unfortunately, be caused by any one of these things, or any number of them in combination.
PARESTHESIA
I try very hard to stay positive and do more to distract myself from the disease than not. However, to help people know why this disease needs to take a priority in all the other worthy causes to donate, people such as myself need to share our experiences.
Paresthesia is abnormal sensations without an explainable cause other than disease.
Most of the time if your skin burns, you see the evidence of a sun burn or some other type of a burn. If you have a prickly feeling it is because your skin came in contact with a plant or an irritant. Not so with MS. My paresthesia started in 2006. My hands and arms would get tingly and numb. When I would bend my head I would get electrocuted from my neck through my spine to my feet. It would come and go. I started seeing an orthopedist and was treated for herniated disks. A year later I had surgery, certain that would fix the problem. A month after surgery all the same symptoms were there. I was told it would take time to heal. I lived with this paresthesia for almost 3 years, thinking I had neck issues. In February 2010, I got very sick with bronchitis and my body went crazy. Everything was tingling and numb, hands, arms, chest, legs. I kept dropping things and tripping. My balance was so bad I had to hold onto walls to walk. I also started getting what is called spasticity in my hands, they would cramp up like a claw and I couldn’t use them until it passed. It was then I realized something was seriously wrong. One month later, in March 2010, I was diagnosed with MS.
I still and always will have the tingling and numb hands, the nerves are damaged. The electrocution feeling down my spine is called ‘L’hermittes Phenomenon’, caused from a lesion at the base of my head and neck that causes the nerve to get zapped whenever I bend my head, I will always have this. My legs and feet feel like they are ‘buzzing’ when I walk and my feet burn and get numb. Also, when my body is fatigued, my legs are useless.
Mostly everyone with MS experiences paresthesia, like most symptoms with MS, it is different for everyone.
WALKING
One of the visible ways people are identified with MS is whether we are walking or not. However, thousands of us get up every day and walk without a gait problem. I do. Many of my MS friends are not so fortunate. I am hopeful to describe what life is like for some of them as well as describe the progressive path of loss of mobility to people.
There are several things that cause us to have compromised ability to walk: numbness, pain, spasticity of muscles, muscle weakness and balance.
From time to time I feel like I have to concentrate on walking to prevent myself from looking drunk when I walk anywhere, or to not show how I’m struggling with the constant ‘buzzing’ in my legs. I have moderately tight muscles and often wake up and feel like I have done a major work out in the gym.
Weakness is still an issue and was something I denied was an issue for a long time It started with kneeling down to put stuff in the bottom of the refrigerator and not being able to get up. I had (and still have to) hold onto the countertop and pull myself up. Anytime I try to kneel or sit on a floor, I need help getting up. My legs don’t have the strength to do the work.
I tell you this for you to know that even the people with MS that seem to walk well have on some level these things impacting their lives. While they are grateful to be able to and love to walk, the act of walking is not something they can do without feeling tired at the end of the walk. That walk, while so important for them, will mean they will need a good rest to recover.
Some days my legs can feel like there is a 20lb weight on each of them. Just literally lifting them to walk can feel almost impossible How can ones legs slowly stop functioning you might ask. I challenge you to this very short experiment. Sit on your legs for a while until you have them really numb, when you get up, don’t wait to recover to start walking, just start walking. That is what the legs of a person impacted by MS feel like! This progression begins with a person realizing that their legs fall asleep real easy, just by sitting regularly in a chair for a few minutes. I hope that gives an idea of one of the possible ways losing mobility occurs in people with MS.
VISION PROBLEMS
A cure for this disease will put the concern of losing eyesight of many people with this disease.
I have had optic neuritis a few times and it has actually caused some permanent nerve damage. Majority of the time is only effects my left eye. It is actually the optic nerve that gets inflamed and loses myelin. I use to get what I called a terrible eye ache, which I thought was just a headache behind my eyes. Now that I’ve been diagnosed I know it is optic neuritis. It is different for everyone, but the pain is severe. You want to push your finger in your eye to make it relieve the pressure. Some will get floaters, some get flashes, some get blurry vision, some lose vision. An office visit can check for ON because your eye does not respond to light the way it should. A MRI of your optic nerve will show the damage. Pictures of your optic nerve will show the color of your nerves. They should be bright red, mine are pale pale pink because they are damaged.
There are three things about MS that scare me immensely, losing my vision is one of them.