I planned on doing a blog on “The Spoon Theory” and its life lessons. It is an excellent read for the unwell or for those who want to learn about people who are sick. Be aware that I have unexpectedly rushed this blog and now it is disorganized. That is what happens when you change ideas at the last minute. I still hope that you are able to enjoy and learn something from it. I also encourage you to read “The Spoon Theory.”
When I was new to my Multiple Sclerosis life, someone asked me to read a story called “The Spoon Theory.” This story talks about a girl with Lupus explaining her life with this disease to her friend. I soon learned how this story is similar to MS and other medical conditions as well. It showed how she must conserve her “spoons.” The spoons represent the energy that the sick have on a daily basis. I say the sick in general because each medical condition is both the same and different. We have to plan out our day cautiously thinking and considering as much as possible. We must each be aware and listen to our bodies. Do we have more energy in the morning? Then we need to be more productive at that time while always being mindful as not to overdo it.
If you know someone that is sick, then be aware that this thought process is occurring in their head. You need to realize that if these individuals say “no” to something, then they are running low on spoons. It probably has nothing to do with them liking you or not. Those of us who are unwell walk a tightrope every day. This tightrope lies between not enough and too much. The truly challenging part is that this line continually moves like a caffeinated Chihuahua. Something that was doing just enough yesterday may be way too much today. For the unwell, it is a constant game of pin the tail on the donkey. “Blindfolded” we try to find this line and not cross it.
Someone who is impacted by the weather must continually be aware of the forecast. Is food needed at specific times? Then preparations need to be made for meals. Pushing too much is easy and can make our recovery time lasting maybe for several days. We must listen to our bodies. Our medical condition makes us methodically plan out our day. Those who are not sick can do whatever and whenever they want. However, we are continually pondering all of these concerns. We don’t want to attract sympathy, so we calculate the “risk versus reward” in our heads. This calculating means if you see smoke billowing from our ears then give us a minute as we are thinking. At times, our brains move slower than a sloth wrestling match.
A significant portion of those that are impacted by MS has cognitive issues. The most significant repercussion of the MS cognitive concerns is the loss of our short-term memory. This symptom causes our brains to move like a snail late for a hot date. This memory loss is why we can’t remember the name that you told us thirty seconds ago. However, we can sing the entire theme song for Gilligan’s Island. “Just sit right back, and you’ll hear a tale.” Ok trust me I could sing it, but I’d probably lose “cool points.” A guy who is single does not want to lose “cool points.” Does all of this information make me woman repellant? Too late it’s out there now.
A friend and her husband were buying a car. She was telling me of their endeavor. They were looking at small SUV’s. She explained how she tried to get into each vehicle the way that I do. I grab the handle above the window and pull myself up while guiding myself onto the seat with the other hand. She told me that she did not realize how much upper body strength that I have. I appreciate that someone “gets it” from actually trying it. On youtube, some people do something called “wheelchair for a day.” For this challenge, they have to do everything that they normally do. They do all of this from a wheelchair. I have talked with other wheelchair users who also appreciate this challenge. It means something to us. A wheelchair user can explain the difficulties, but it means nothing. Comprehension takes someone attempting a specific skill. Only then will a person truly “get it.” It is the difference between telling someone how to drive a car and getting into a car and showing them how to drive said car.
One of the most “rhythmic” Multiple Sclerosis symptoms is spasticity. In its most mild form, you may see slight muscle twitching. In some of its most extreme cases, you will see these extremities jump. These muscles spring about like being juggled by a 300-pound gorilla. No matter the strength, these spasms can happen at the most inopportune times. I have seen someone with extreme muscle spasms nearly lurch out of their wheelchair. These “monster spasms” can impact nearly every minute of their lives. The other side of muscle spasms is when they merely tighten the muscles when they are not supposed to. For me, it can sometimes work in my favor. I partially stand to dress. When I stand to pull up my pants, the spasms sometimes happen as I stand. This timing makes it easy to position and stay standing longer. Other times it happens just before I stand or as I prepare to transfer. This lack of ability puts an instant halt to movement like a troll standing guard on a bridge.
Another MS symptom that is hard to see, pun intended, is vision issues. I have interacted with people at every level of the spectrum. Everything from “I can’t read that small print” to “I don’t get it! This braille does not make sense! UGH!!!” I have personally zigzagged on that spectrum like I was on a scavenger hunt. Thankfully with lousy vision, your hearing can become the focus. This better hearing makes TV watching a unique experience. For me, it is difficult to explain my visual experience because there is nothing to compare it to. I get an eye exam every year, and my vision has not changed for the past six years. However, I did not get many eye exams before that.
There are four forms of Multiple Sclerosis. The first form of MS is called Relapsing-Remitting MS or RRMS. RRMS is the most common form of MS impacting 85% of the 2.3 million patients worldwide. There are approximately 400 thousand MS patients in the United States. People with RRMS have temporary periods called relapses, flare-ups or exacerbations when new symptoms might appear. The symptoms of RRMS ebbs and flows like the tide on a full moon night.
“The next item up for bid” is Secondary-Progressive MS or SPMS. SPMS is more of a mixed bag. In SPMS the symptoms worsen more steadily over time. This worsening happens with or without the occurrence of relapses and remissions. The SPMS means that the ebbs are sporadic and the flows are perpetual. Although it’s not common, those with SPMS may experience minor remissions or plateaus in their symptoms.
The last two forms of MS are more straightforward than the others. Primary-Progressive MS or PPMS is the third type. This type of MS occurs in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions. Lastly is Progressive-Relapsing MS (PRMS). Occurring in 5% of MS patients it is even a more rare form of MS. PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery.
These are just a few of the many challenges that those with MS deal with on a daily basis. I would always rather see difficulties and not deficiencies. Most of us do not want special treatment though we would never refuse ice cream. Patience is essential when interacting or befriending anyone with MS or any medical condition. Remember this: be kind to us, and we’ll be good to you. As the saying goes “do unto others as you’d have done unto to you.”
I have been living with MS for seventeen years, and the challenges have been plentiful. I now try to see the humor in everything especially my MS life. I have tried to weave a lot of funny into this blog. I do this because the friends that I now have help me to see the humor in life. If you have read my blogs, I often talk about the significant benefits of having friends. There is no doubt in my mind of this fact. We, humans, are social creatures and not built for solitude. How often did you see anyone alone in the fortress of solitude?
Most of the MSers that I know agree with the quote “if you’re not laughing you’re crying.” Those of us who have had MS long enough knows that we have done too much of the later. When we are comfortable enough in our MS life, then we will often poke fun at ourselves. I hope that you have learned something from this blog. I tried to encourage you also to see the humor in everything including MS. “Laughter is the best medicine.”