My MS on a bad day…

This blog entry is the sibling to my previous post. However, it seems silly to detail minute by minute again as most things are the same. The only parts that I will detail are how my MS negatively impacts my day. You will also read how I continually set timers. I know that it seems odd to set these alarms. However, they require me to rest the full amount of time that I have set. Too many times I have tried to repeat something too quickly, and I failed.

I have noticed that the last few weeks specifically have been a physical struggle. My leg spasms during dressing and transfers have become more frequent. My leg strength has also been diminishing in that same time frame. I have said before that there is a fine line between doing too much and not enough. My drastically positive swimming results have lured me into a false sense of security. These outcomes happened so quickly that I wanted to do more, but much too fast. These conflicting results remind me that I need to be more cautiously aware. All of this is in comparison to my Pre-MS Days.

As I wake up this morning, I shimmy my legs to the side of the bed. I quickly notice some troubling signs. These appendages of mine are supposed to bend as they meet gravity yet they do not. There is a lack of willingness from my legs to give in to the earth pull. This difficulty makes it difficult to sit upright while sadly bringing a slow progression to my day. This tug of war between gravity and my spamming legs is like a sloth wrestling match. It takes a while for my legs to comply yet they gradually fall towards the ground. I am finally able to sit up, so I pull my wheelchair closer.

I begin the process to transfer to my wheelchair. Leery after the great gravity altercation I cautiously calculate the crossover to my chair. I pull my chair as close to the bed as possible while also scooting it forward. This new location will help minimize the needed leap of my rump to the seat. I place my right fist on the right side of the wheelchair cushion. At the same time, I put my left clenched hand on the bed. This action helps me to prepare for the fling and flop that is about to occur. I push down simultaneously with both hands. This motion allows me to throw my derriere onto the wheelchair seat.

I have a transfer board to aid me in moves like this. However, I have tried it several times with no success. Every time that I have attempted to use my slide board it has been more of a hindrance than a help. I suppose there may be a correct way to use slide boards. Sadly I was never taught. I would say that I need to educate myself on youtube. They have many styles for various situations, yet my problem is a simple lack of knowledge. Most of these boards are wood although a plastic one would be great for my shower transfers.

As my rear lands on the seat cushion, I feel slightly unbalanced. I am as wobbly as a spinning top and quickly grab for the bed. The vertiginous air from the wings of a fly would have knocked me over. Down I go *whoosh* splatting onto the floor. I quickly run through all of my limbs checking all of my vital parts. I verify that I nothing have broken and that as I get up nothing will poke, prod or pinch me. The adrenaline after such a crash can mask any pain. This time I have a few abrasions, but nothing significant is injured.

I begin to get dressed to go into public. I dress differently while in society than I do when I stay home. I carefully put each foot through the leg holes of my shorts. Using my hands, I deliberately place each foot on the ground in front of my wheelchair. I calculate the spot that is far enough away from both the wall and my chair to set my feet. My feet need to be far enough from the wall so that I lean a little towards the mounted grab bar. If I am too close to the footrest on my chair, the metal plate will dig into my heels.

When I thrust myself upward, I am standing for a microsecond and then my knee buckles. Let me explain a relevant fact that is instrumental to the next part of the story. The sideguards on my wheelchair have several bolts that broke off. This damaged condition forced me to remove these side pieces until I can repair them. The left leg was the culprit, and I fell back and to the left. My arm slid precisely through the spokes and the seat frame.

Now I am in a bit of a pickle. I have legs that do not have the strength to straighten up and quickly pull my arm free. My fingers are entangled in the spokes so I cannot roll the chair without losing a finger or two. I try pulling myself up using the vanity, but my legs are as strong as cooked pasta. My cell phone slid across the floor out of reach when I fell so I cannot call anyone. I sat there for several minutes questioning my curious query.

I struggled to attempt to push the quick release button of the wheel without rotating it. The first endeavor took several minutes and a few pinches to my phalanges. This try gave me one-quarter of an inch, but with no success. At this point, I thought of the movie 127 hours, but I am not that crazy. The second venture whipped me out of all remaining strength that I had. Thankfully it gave me another quarter of an inch equaling just enough space to get my arm out. I quietly lay on the floor in the bathroom for five minutes.

I purposely left the part of getting off of the floor and back into the chair for last. This part was left out because all falls are different, but the recoveries are about the same. There are three parts to getting up after a tumble. Importantly for my recovery, I must be wearing shoes. I need to put on shoes that give me grip from the rubber soles. At this point, I need to use my hands to position my lower limbs. I do this to make my feet correctly situated for my sneakers. These movements are tricky when your legs do not cooperate and fight you along the way.

The re-positioning of my body is my priority at this point. These adjustments are needed because when I collapse my limbs go everywhere. Thrown an inch or a foot, it is a real battle royale to pull me together. I must scoot around and arrange my body at the front of the wheelchair. This shift usually takes some time as my floor shuffle is extremely slow. The next challenge is to place my rump on the footrest.

This new location elevates me about four inches. Now I am closer to the final destination of my posterior. I want to help and not hinder my thrust into the seat, so I arrange my legs accordingly. After all of this struggle, I tell Google to set a timer for one minute. This sixty-second respite prepares my body for the next exhausting task.

A year of vigorous strength training has made my arms especially my triceps much stronger. I place each hand on the bend of the leg rest on my wheelchair. I grip tightly and forcefully push myself upward. With some struggle, I land on the seat and quickly try to scoot myself back. My legs spasm so until I get the needed leg relaxation this halts my slide back into the seat. Again I tell my Google home device to set the alarm for one minute. I rest and then I begin to adjust my legs onto the footrest carefully. Finally, I move on to the task that I planned before I fell.

I roll up to a small SUV that will be my transportation for the afternoon. I always hope to see a slingshot or a springboard to get me into the vehicle. Sadly I am disappointed because no car company offers that upgrade. Preparing to get into the car I pull my chair up at a slight angle and as close as I can get. Holding the car door with my right hand and the passenger seat with my left I hurl myself upward. Then I quickly move my right hand onto the grab handle above the passenger window.

Many automobile seats rise a bit on the sides like shallow bucket seats. The stars align incorrectly, and I do not pull up hard enough at the right moment. My pants catch on the outside of the seat cushion where it starts to rise. This halt causes me to get hung up so that I can lift no further. My first response is to pull harder awarding me no success. My fast-acting driver gives me a lift causing me to make contact correctly with the landing pad. However, several times I have even slid back onto the wheelchair to reset and retry.

My leg spasms are an inconvenience that slows me down. During these spasms, my legs look like a soccer kick caught on camera. This muscle stiffening does not generally cause me to fall. Never the less it slows down all of my movements, and I must wait for those muscles to calm. The real trouble comes when I am getting in or out of the car during the rain. Transferring to or from a vehicle is time-consuming in of its self. This slowness during the rain makes staying dry during these transfers an impossible task.

As you can see, some days are good and some days are not so good. That said, the challenging days are more manageable than before. I am now stronger than in my early MS days making my difficult days less severe. I have the physical capability to do what is needed to accomplish most tasks. Now that I have had Multiple Sclerosis for nearly twenty years I am wiser. I can problem-solve as a situation arises. I also do not panic as I did before. I may think a bit slower, but I have the patience to take my time and figure things out. Somedays my recoveries are laborious and slow, and I am ok with that.

I was able to complete most of this blog before my family arrived. I also had the opportunity while they were away visiting others to finish and post it on time. This blog entry will be my last post for maybe two weeks. Everyone have a fun and safe Fourth of July celebration!

3 thoughts on “My MS on a bad day…

  1. This was an incredible post and I look forward to reading more of your posts! I have been battling MS for almost 18 very long years, but I do my best to stay positive and keep fighting the battle! I hope if you have the time you will check out my site. I always aim to encourage and inspire others through the words I share!

    Liked by 1 person

    1. Thanks Alyssa I appreciate the kind words. I too look forward to my next blog LOL because I never know what I’m going to write. I will check out your site. Thanks again glad you enjoyed the post and hope you have read some of my previous Ms posts

      Liked by 1 person

      1. You are very welcome! It is amazing how helpful writing can be for the issues we may deal with. Honestly, writing is my outlet and helps me so much. I will definitely read your previous posts as well!


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