Diamond Days, Stone Weeks

The title pretty much sums up how most with Multiple Sclerosis feel at any one time. This is just my journey thus far with the disease. Each case is different and unique to the person who is battling to win back a semi-normal life.

Multiple Sclerosis, most widely known as MS, is an autoimmune condition which causes the immune system to attack the central nervous system, specifically the myelin sheath that protects and helps carry the signals through neurons. This attack causes scarring on the myelin sheath leading to decreased or complete stoppage of signals to different part of the central nervous system.

Now that the technical stuff is out of the way, let me try to explain it the way I understand it. Throughout your body there runs a wiring system much like a house. The plastic coating (myelin sheath) around the wires protects the smaller copper wires (central nervous system) that do all the work and once that coating is damaged the wire shorts out causing intermittent losses of power or complete loss of power. The same way with your central nervous system if the protective casing is damaged or destroyed your body reacts much the same way - losses of function or trouble with that function.

I was diagnosed back in 2003 after spending a day with horses and being gently nudged by one after giving him a carrot that it made me lose balance to the point I fell. I had been having severe numbness in my torso for several weeks prior, but after we returned home, I sat on the edge of the sofa that Saturday afternoon and gave in. At 5:30pm I was at an emergency room and by 9:30pm I was admitted for "further testing". Testing included blood work, x-rays and a MRI. By 5:30pm on Monday I was given the word that I had MS (I will admit that an MRI is a very cool thing to look at even though it showed that I have several lesions inside my brain and within my spinal cord). The first words out of my mouth were "can I go home now?" I guess at the time that the diagnosis did not sink in. I was taken out of work for a few days and instructed to use a cane and to report back to the hospital for an infusion of medication to help fight MS.

I really did not know what it was until I went to the bookstore to get a few books to help me understand. After reading the books, it finally sunk in that I have a lifelong handicap that there is no known cure for. I started medical treatment and the few that I have participated in seemed to make matters worse and not better, but I continued them anyway under the advice of a doctor.

I continued to work a full time job and live my life as I had normally done, but only a few years went by and things started to get worse - my doctor's only reply was more medication to be pumped into my system via infusions.

I read the books that I had purchased to make myself, my family and my friends aware of the symptoms. I learned that the many symptoms that are related to MS not everyone gets - I am thankful for that. What I have experienced I believe may be common for most of us that live with MS.

Walking: This is the fun one. For me it is like being on a roller coaster without the price of admission. People always say "s/he has a bounce in her/his step today" usually meaning that the person is joyous. For me that is my now natural gait and the only way to stop the bounce is to make me hold something heavy. My walking can get so bad that I have to use a cane for stability and when it hits without warning I walk like I have been drinking too much. At least I don't get the unpleasant effect of a hangover.

Vertigo: otherwise simply known as "being dizzy". Ever been on a ride that spins you fast and when you got off the ride, you continued to spin? That is my vertigo. I get to go on my own personal ride and I don't have to pay admission or stand in long lines waiting for the ride. Unfortunately, it can hit at very inopportune times and get strong enough that laying down makes it worse to the point I wish I had been on the ride. Sometimes medication works, but more often than not, I just have to finish the ride and then complain to management about the ride operator.

Speech: My speaking now becomes impaired. I stutter trying to get words out. My speech becomes affected during stressful times or when I become tired. People think that it can be romantic if someone you love or loves you finishes your sentences - well it can be, only if it were true when you want to order french fries and a drink.

Congintive: For laypeople (such as me) this just means that my memory is being slowly taken away. It is not all that bad, I have learned how to take notes so I can continue to so the one thing that I love, which is writing. Thankfully, I have always been a note taker, now it is just a whole lot more detailed. I have to take care and ask questions about instructions to make sure that nothing is forgotten. I am now more forgetful regarding things that I want to say or things that need to be done. It is interesting and sometimes funny because I can walk into a room several times to do something, but forget the moment my foot crosses the threshold. Felt pens come to mind, but it would look as though I am covered in strange tattoos to help me remember that I had walked out of my room to replenish my drink or to let the dog go play.

Doctors: The ones have had to deal with only are concerned with pumping me full of medications that do not work. They claim that I do not have a walking problem, but they only see me walk no more that five feet and for that short distance, I do not have a problem. Appointments are a joke, I ended up waiting longer than actually seeing the doctor and when I finally get in to see them, the appointment took no more than ten minutes with a few quick tests and then they sat typing in their notes into a computer system while my mother and I tried to make them understand that I was having problems and the medications they kept prescribing were not working. I know there are good doctors out there, and I am in hopes that I will one day find one before it becomes too late to slow the MS process down.

I keep light of what I am going through as it is the only way I can keep a handle on things. So what I have got to joke about while living with this:

Canes: Or what I like to call "my people trippers". I have several and they are all named from "Stretch" who is my everyday work cane to "PS and PS2" which are two fanciful dragon topped canes in bronze and silver I use when I go out someplace special. Just think, most women buy shoes to match every outfit, I can buy canes and do the same thing. And if by chance there is a rude individual that does not allow me to get past them while shopping, a well placed cane gives me a small amount of revenge for having to wait while they decide on either to buy Wheaties or Captain Crunch.

Parking: That is the only thing I feel the doctor was good for. They signed the DMV document that allowed me to get a permanent handicapped parking place. No longer do I have to fight to get a spot close enough so I don't have to trek from the north forty during the summer heat and it is much easier to have my purchased goods taken to the vehicle.

Support: My friends and family are very supportive in all that I can and cannot do. They all make sure that I am taking it easy and not pushing myself the way that I once did. I am thankful that they all stood beside me and did not desert me when they found out. The old adage of "life is complete as long as you have friend" really rings true. They offer their support regardless is I ask for it or not. They are there to catch me when I fall and help me back on my feet. Support groups are a good way to get into contact with those who share MS, but I have not found a group close to me, thus my family and friends are the ones who have become my support system and group.

As one can see there are a lot more downsides to having this disease, but I prefer to look at the bright side of things and laugh. A good case (not to mention a good visual) and something funny to think about - I have to be very careful carrying eggs otherwise I would drop them, but I think if it this way - I am carrying the eggs I wanted scrambled anyway, who knows - maybe when I crack it open it will already be scrambled thanks to my bounce.

Yes, I have MS and I am not ashamed of it. If you have a bad thing to say, I will warn you that I am a very good aim with my cane. To all of those who were just diagnosed to you I say - smile, you will have diamond days, but you will have stone weeks. Cherish your diamond days as they are as precious as the real gem. I have made light of a very serious condition, but if one cannot laugh, then one cannot survive. That is how I survived my journey thus far.