What it can be like for Me

The other day I received a letter from the upper Midwest chapter of the MS Society. They are gearing up for their busy time of year. March is MS Awareness Month. Once spring and summer are in full swing across this northern part of the hemisphere, the MS Walk and Ride for MS will be held. Since being diagnosed with MS, I have wanted to participate in the MS Walk. Each year, though, I have been unable to commit. Usually it is the fear of ending up having to walk on a very warm day. May in Minnesota can vary tremendously. I have seen it snow in May; I have also seen temperatures close to ninety degrees in May. I could certainly handle walking in the snow, but ninety degrees, even eighty degrees, would not have ended well for me in the past. This year, though, I have a cooling vest. I still would struggle to some degree if temperatures were to hit ninety, but would most likely be able to finish the walk. Last year, I needed a cane to walk and knew there would be no way I could commit to a fundraising walk for MS. But, most days now I do not need the cane, so I asked my husband if he would be willing to walk with me. He readily agreed and we decided to see if we could get some friends and family to join us for the walk. I posted on Facebook about it and actually got some interest. We are moving ahead with plans to form a team to participate in the MS walk this May.

As I thought about my post, I wondered how many people who read it really understand how MS has affected me. This disease is very unpredictable. For example, one area that it has hit me exceptionally hard is that of heat intolerance. As temperatures warm to seventy degrees, my body starts to react negatively. At eighty degrees, without my cooling vest, I am basically stuck inside the house with the air conditioning set to a low number. Throw in good old Minnesota humidity, and outdoor activities between the hours of 10:00 Am and 7:00 PM are next to impossible. Oh, I have made exceptions–and paid dearly for those decisions. A fun few hours spent at a county fair usually lead to a few days resting on the couch or in bed in hopes of recuperating.

Another area that MS has affected me in a big way is balance. In fact, constant dizziness was my first symptom of the disease. There have been times where I have been driving somewhere and have had to pull off the road for fear of causing an accident. There have been months at a time where I didn’t dare drive far from home–if I drove at all. Just the other morning, I was walking on a treadmill at the gym and nearly fell because I lost my balance. Walking is good for me. It is a form of exercise that is the safest, and experts say that some exercise every day can help ward off disease progression. Still, it is often a risk I take. I seldom walk outside alone for fear I may not be able to make it back home. At least at the gym, if I were to fall, there would be people around to help.

One of the most common symptoms of MS is fatigue, and I am no stranger to this aspect of the disease unfortunately. I have described my fatigue as trying to swim in ocean waves while wearing jeans and a heavy coat. There are days that getting out of bed and showering takes all the energy I have. I read a story titled “The Spoon Theory”. If you’ve never read it, and you know someone who has a chronic illness, I highly recommend you Google it. The story explains exactly how difficult it is for people who struggle with illness to commit to anything. Countless times I have had to cancel plans I made with a friend because I simply did not have enough “spoons” at my disposal…or, if I did, I knew I would need them for some other important item. Choosing between plans is not always easy and often leaves me feeling as though I let a friend down. Yes, they may say they understand, but my mind usually wonders if they really do.

Another early symptom for me, and one that has been getting much worse over the last month, is nerve pain. For me, that usually affects my feet and hands. While simple exercise, such as walking as I mentioned above, is good for me, it is also extremely painful. There have been mornings that, as I leave the fitness floor of the gym, I fight back tears until I can get to my van. The burning pain in my feet is that bad. Every morning, for the last month or so, has found me waking up feeling as though someone has lit a match and set fire to my feet. Walking down the stairs in the mornings can be excruciating. The burning is less intense during the day–always present, mind you–but ramps up again as evening comes.

Some MS patients experience difficulty in swallowing. I would have to raise my hand to be included in this category as well. It is a very scary thing to need to swallow saliva, especially while trying to fall asleep at night, and not being able to get your mouth to work the right way in order to do that. I’ve also experienced swallowing that has caused terrifying choking episodes. When my husband and I took our long awaited vacation this past summer, I experienced this. I was enjoying an ice cream cone as we walked through Epcot theme park. It was HOT and HUMID and my body decided it didn’t like what it was feeling. It seemed to shut down the correct path as I swallowed, forcing the cone to go in the wrong place. I managed the first few times to redirect and avoid choking, but eventually I was unable to control it. I thought I was going to need an ambulance to get me breathing again. It was very scary.

There are other MS related issues that I deal with. Most of them are minor, at least compared to the ones already written about. Bladder issues, chronic pain, sleep abnormalities, cold hands and feet that refuse to warm up no matter what I try or how many layers I add, and, most recently, vision issues are just a few of the other aspects that affect my life because of this disease. I know, though, that I am blessed. I know some who, though they are younger than me, can no longer walk at all. A friend of mine lost his daughter-in-law at the young age of 43 to this disease. Because this year, at least as I type this, I am capable of participating in the MS Walk, I plan to do so. I hope my family and friends can walk with my husband and me. I am always hesitant to ask since I often feel like a burden anyway, but if a cure can be found, I certainly want to do my part in helping that come to fruition. Even if the MS Society goes another year without announcing the discovery of a cure, I know the money raised will be put to good use. Wheelchairs, canes, cooling vests, and other aids that can help those of us affected by this disease live as close to a normal life as possible all can be found via the MS Society. For me, that is reason enough to attempt to walk this year.

I hope through this post, if you know me but didn’t know quite how MS affects me, allows you some insight into how MS affects me on a daily basis. The strange thing about this disease is that the affects vary so much from person to person. Some who have been diagnosed have had one relapse and then spent twenty years symptom free, while others seem to be pounded relentlessly with symptom after symptom, relapse after relapse. There is no predictability to it, and sometimes explaining it can get tiring. I am in the process of changing things in my diet to see if I can gain healthy ground that way. It may or may not work. Some swear that a Paleo diet will “cure” this disease. That is just not true. However, I understand when people offer advice or point to a person who they saw online that had success with x, y, or z in their battle against MS. I understand that those people mean well. I just hope I can get the same level of understanding should I need to cancel plans I made with you or am unable to get out of bed and do much on any given day.

About becmom45

Wife of one, mom of four, mom-in-law to two, grammy to one precious little boy; lover of snow, autumn, pumpkins, cats, books, baking, Charles Wysocki puzzles, Christmas; honest, raw author who hopes what is written here enlightens and educates those fortunate enough to not understand the demons chronicled.
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