My MS story 4.1 the final chapter…

Until my move is complete, this will be my last blog. This blog is a comparison of “a day in the life” of now vs. then. I have not included anything dark as I don’t want to relive that time anymore. All in all this blog may feel pointless to you. However, because of my move, I don’t have the mental focus for a decent blog. Of course, what is a worthy blog? If you read any of my other posts, you will see that I don’t know.

This blog shows “a day in the life” of my MS current average Monday. These times are estimates, but because I am a creature of habit they are pretty close.

The alarm goes off at 6:45 am. I want to hit snooze, but the Marine Corps and my mom eliminated ‘snooze’ from my vocabulary. I eat breakfast while listening to an audiobook. I take eight different vitamins and two prescriptions during my morning meal. After I eat, I rinse my bowl and spoon and put them in the dishwasher. At 7:25 I go in and brush my teeth, shave my head and trim my beard. I go into my office at 8:05 and work on my next few blog entries. At 9 am I make sure that all of my swim stuff is in my backpack. I do this so that I can get ready to leave for my swim class.

At 9:48 I show up at the rec center. I get dressed so that I can get into the pool by 10:00. I begin doing the exercises specific to my needs. The entire time that I am in the pool I exercise my legs. I have three different leg and ankle exercises to focus on different muscles. After all three of these are done I rest for one minute. At this point, I start this process again. I do this routine for about 15 minutes, and then I relax for two full minutes before starting all over again. No matter if there is someone to talk with or not I continue to do these exercises. I follow this regiment because I have regularly seen significant benefits. My instructor and my classmates both have mentioned the changes that they have seen in my abilities.

There is occasionally someone sitting next to where I sit, and I try to chat. Socializing with strangers is very difficult for me. By 10:44 the other class members begin to arrive. My classmates usually say hello, and occasionally we talk before class. Someone explained to me that these ladies feel that it is wrong for a married woman to stand next to and speak with a single guy. This attitude must be an age thing as they are about in their 70’s. At 10:57 we all start to move to the class. For the next 50 minutes to an hour, we have class. After class, I swim a few laps in the lap swim area. I do my best to get every bit of fitness that can. When my laps are complete I get out of the pool, take a shower and get dressed.

By 12:50 pm I leave the rec center and I head home. At approximately 1:11 I arrive back at home and eat lunch. Since I am starving, I have a couple of frozen burritos. These burritos only take two minutes and thirty seconds in the microwave. This fast-cooking means that I can eat sooner. For the next fifteen minutes, I eat the burritos. I also continue listening to my audiobook. When I am done eating lunch, I rinse my plate and put it in the dishwasher.

At 2 pm my friend calls. He has a new job that starts at 3. He drives to work early and wants someone to talk to while he waits. I am the lucky ‘chosen one’ to play his listening post. At 3 I take a brief 20-minute power nap. Yes, a nap that short works. Studies show that you do not need to actually “sleep,” but merely rest your eyes and brain. So at 3:28 I resume working on my blogs. No, that is not an eight-minute snooze I just move “slower than a heard of turtles stampeding through peanut butter.” I typically work on up to five blog entries at a time. One would THINK that if I am putting so much time in on these blogs that they would be good. Ha, I have you fooled, and you would be wrong. This blog rotation keeps my brain fresh for each blog. Some of these blogs I work on for a while and end up putting them on the back burner. Occasionally I just delete them after significant work on them.

I usually watch a few hours of TV throughout the day. I also set the alarm to remind myself to get up and do a few standing leg exercises. I make sure that this happens every hour so that my leg muscles keep the blood flowing.

At 4:42 pm I go into the kitchen to make dinner. I try to eat something fresh, but that is not always possible. Let me explain something: I still eat horribly. This lousy eating habit has several reasons. First, it is laziness. It is much easier to open and drain a can of corn or cook a TV dinner. I serve these meals with flavored seltzer water, and that is my meal. Second, I get no enjoyment from cooking only for myself. So as I said before “food is a survival thing. It is not about taste right now.” Lastly, it is a habit. After lunch and dinner, I like something sweet. If I don’t have fresh fruit on hand, then the something sweet is a Larabar.

At about 8 pm I stop working on the blogs. At this point, the words just do not come together correctly. So I start watching TV or do my bills. I also have a 501c3 charity that I work on throughout the day. I continue doing this until 9:15. At that point, I go into the bathroom to brush my teeth, take my evening vitamins and prescriptions while still listing to my audiobook. At 10 pm I go into my bedroom and prep for bed. I crawl into bed to visit the Sandman at about 10:20 pm.

A day in the life of the “dark days.”
The following is an average day in the life during my dark days. Sadly, this could be any day as they were mostly all the same.

I wake up at 1 pm. I eat a 2 oz bowl of cereal with milk for breakfast. I rinse my bowl and spoon. I set it on a towel on the counter to dry ready for the next meal. I sit on the couch and watch TV. At 6 pm I eat lunch. Lunch is a can of green beans with some Italian dressing on top. I rinse the bowl making it ready for my next meal. I continue to watch TV. At 11 pm I make a box of mac and cheese for dinner. I split it into thirds as it will feed me for three meals. After I eat, I rinse the bowl and fork then I set it on top of the counter. At midnight I quickly check the mail. I watch TV until I go to bed at 2 am. WOW, that was quick. Man, I was one boring guy!

To the average person, my schedule now looks very inactive. However, compared to ten years ago my new daily routine is busy. This example shows how ten years ago time ran together. It was a stretch to come up with the times for ten years ago. However, for the recent years, it was pretty simple. Lastly, I know that the time for the first part seems absurdly exact. I am showing that I am a creature of habit. It is also the time of the day with very little traffic on the roads. My life has changed in a significant way in the past five years. “Oh, these times they are a ‘changin’.”

My untold MS story 4. A new beginning…

The first three parts of this blog were simple to write. I merely wrote things down in the order that they occurred. ‘A’ happened before ‘B’ which happened before ‘C,’ so the task of writing those blogs was simple. However, today’s blog is not as clear-cut. Instead of the chronological order of events, it is a group of my experiences since “the fog” lifted. This is my new beginning.

This blog shows just how far that I have come. I have gone from the “darkest of darks” to the “ball of sunshine” that I am today. Stop laughing at that! I am a BIG ball of sunshine! Seriously though, life has gotten much better for me. I now have the friends that I have not had in years. I am active in my church. I exercise in the pool three times per week. I am beginning to accept the concept of asking others for help. However, this attitude of acceptance is a work in progress.

I occasionally deal with interesting people in public. I was in a doctor’s waiting room several months back when the gentleman sitting next to me started a conversation. For the record, I often think about the quote “it’s better to keep your mouth closed and appear stupid, rather than opening your mouth and removing all doubt.” This guy said to me “I know exactly what you are going through. I was in a wheelchair for two months because of…” I do not remember why as I was perplexed by his puzzling point. I am a nice guy and did not say what I was thinking. However, it is an inconvenience to be in a wheelchair for two months. On the other hand, being in a chair permanently is a lifestyle. I let things go “like water off a ducks back.”

A married couple decided to treat me to lunch. The waitress came and took the order of the husband and his wife. Instead of asking me for my order she looked at the husband and asked “and what would he like?” nodding my direction. The husband quickly pointed to me and said: “ask him.” Now at times, I can be sarcastic. I WANTED to say in a baby voice “I WANT PASGHETTI!” Instead, I simply said, “I’ll have the salmon.” There are a plethora of stories like these from the last five years. If you have a great attitude and a good sense of humor like I do, they make you laugh. Or do they make you disappointed at society? As they say “if you’re not laughing, you’re crying.” Personally, I’ve done too much of the second so I’ll just laugh.

The good thing is that the majority of people out there are kind and helpful. Most people hold the doors for me, and I appreciate that. People help in various other ways as well, reach something off of the top shelf for me. It could also be that I always try to have a great attitude. I have been told that I have a great smile. When I leave the house, I may be missing something, but I always wear my smile. Said in a Scottish accent: “They may take my socks, but they’ll never take…MY SMILE!” that was a Braveheart reference. I give that a 6.5 on the humor scale, but hey I always try.

I currently attend a water fitness class. I continually see significant benefits from this aqua movement class. The instructor has given me several exercises that are specific to my needs. These exercises help keep my arms at peak performance. Since I “walk” with my arms I focus a lot of time strengthening my upper body. The instructor has also allowed me the time to do some exercises alone if I choose. The class is a one hour class. However, I show up to the pool an hour early. I start this early to allow myself to begin focusing on my specific needs. The aquatic teacher realizes that my independence is important to me. She has also taught me several “self-rescue” techniques. These skills allow me to keep my independence even in the water.

This regiment shows how I exercise three times a week for two hours each day. This weekly six-hour routine gives me a total body workout. I hope to grow up to be big and strong one day. I have even done a 5K in my wheelchair. Fitness is now an essential part of my life. I often tell people that if they do not keep their bodies moving, they will “rust.” I think that wheelchair users forget that they too need to exercise. Exercising in the water allows each person to target their specific needs. There is a quote that someone told me “Run if you can. Walk if you have to. Crawl if you must. Just never give up!” I try to live this principle.

When I grocery shop now I buy food like this: I buy three to four days’ worth of canned foods. This canned food may be corn, green beans, and Chef Boyardee. I always keep on hand, two jars of spaghetti sauce and four boxes of spaghetti noodles. I buy three days’ worth of TV dinners. Of course, I always buy fresh fruit. I also buy nearly a week’s worth of things from the deli. Lunch meat, chicken tenders, and pasta salads. I only drink seltzer water. I always have powdered milk on hand. I make four cups at a time, so that it never spoils. I also keep plenty of breakfast cereal on hand.

I have been in my current home for nearly twenty years. My house was built in the 1950’s, and at that time houses had no ADA concerns. I am currently building a new house that will be wheelchair accessible. The washer and dryer are going to be on the first floor making laundry an option for me. The main part of the kitchen will be standard height. I found that some essential features would be lost if I chose an ADA height kitchen. The kitchen island will be ADA height for my ease of use. The light switches will all be brought down to fit my height needs. All of the outlets will be raised to meet my requirements. The thermostat will be installed at my eye level. All of this helps me keep my independence.

I appreciate that the wheelchair ramp will be in the garage. This hidden ramp is a security feature. Passersby will not easily see that a disabled person lives there. This ramp will also be protected from the weather and its degrading effects. Another substantial benefit is that the neighborhood has sidewalks. There is a community center for residents and their guests that is one mile away. This distance gives me a reason to get out and “stretch my arms.” Another important perk is that most things are incredibly close.

For several years I have been making my house into a “smart home.” These smart capabilities seemed superfluous when I first heard of them. Now I see the numerous benefits to those in predicaments like mine. I plan to make my new house “smarter” than my current house. I will be moving into this new house any day now. I am building a “house.” Having a family will make it a “home.”

It has been nearly 16 years since I have dated. I have been contemplating the idea of dating. I have tried the online dating sites with no luck. I am just too introverted. To date online you must be outgoing. A friend suggested that I use a matchmaker service and that is my plan. Interestingly several years ago a buddy informed me that “when dating you will get 100 NO’s before you get a YES.” I am currently still in the low numbers meaning that my yes is still a long way off. However, I am “positive” that I will be married again. Sometimes Opportunity Knocks. I used to let it pass me by, like a guy watching a parade. However, it knocked recently, and we had a brief conversation. Inevitably I walked away from this opportunity like a knucklehead. This action shows that I am getting better at socializing, but still not enough. “Today is better than yesterday but not as good as tomorrow.”

I heard someone say, “The only difference between adventure and adversity is attitude.” I now do my best to always have a positive attitude. Stress will always be a major concern in my MS life. I try to keep an overly positive attitude about everything. If someone treats me poorly, I simply brush it off. I still have had bumps in the road causing stress. However, having friends helps minimize the impact of said stress.

I am a little nervous about the move to my new house. I know that it will be an extremely stressful situation. I’m not yet sure how to deal with this hazardous and harmful hardship. The anxiety from a move is also longer lasting. As I said, friends help minimize the impact of the stress. Whether they realize it or not my friends have helped reduce some of the small stresses in my life. My concern is that this anguish will be more significant. I am a planner, so I hope that my preventative preparation has helped. I do fear this transition.

I have been to the “other side.” It is an extremely dark and scary place that no human should ever be. I still deal with MS issues on a daily basis as MS is now my life. I still have frustrating and occasionally infuriating moments. Like most people, the “reflection” on life can cause distress or laughter. Life for all of us can create extreme joy or deep sadness. The difference is that I no longer feel alone, and that changes everything.

My MS story 3. The darkness before the dawn…

To my readers, please be aware that this is the darkest part of my MS story. I tried to keep the first two parts light like a dramedy. However, this part is more of a horror story. This is my story no matter how dark. “It is darkest before the dawn.”

In 2004 I had to stop working because of my MS. All of my friends had disappeared. I felt embarrassed and ashamed to be seen in public. I kept the window blinds of my house closed never opening them for any reason. I would not check the mail until well after dark. My mailbox was just an arm’s reach out of my door. I also would not take out the trash until after dark. Using the garage door opener, I would open the door. The light would automatically come on for thirty seconds. This timed light meant that I had thirty seconds to take out the trash and get back into the house. When I had to take it to the curb, I would wait until very late at night.

I regularly played the song “I Wish it Would Rain” by the Temptations. There were several other songs, but that one had a much deeper meaning to me. I would go weeks without seeing another person. My walking had become extremely “wobbly.” I did not believe it until one day I noticed a dark gray line throughout my house. I realized that this dark line on my white walls was from my hands. As I walked through the house, I would use the walls to help stabilize myself. These actions are what we MSers call “wall-walking.”

I had been in this depression now for four years. At this point, I began to slide farther down this deep dark hole of sadness. I met a guy a long time ago who could get you anything that you requested. He is not the type of person to call or hang out with after work. This guy is someone from the dark underbelly of the city. I called him up and hesitated to say anything. He said: “What do you need, green?” “No,” I said, “I’ve never done drugs in my life.” After a brief silence, I said “something shiny and metal.” I could not even bring myself to say it. I could not believe this idea that was running through my head. “I’ve got just what you need. I’ll be over in a couple of hours,” he said.

When he showed up, he had a sports bag slung over his shoulder. He sat in my chair and put the bag on the floor. He pulled out a small handgun. “How many bullets do you want?” I thought to myself, one? “I don’t know?” I questioned. “Just one box is probably enough,” he said. We talked for a few minutes. He asked several questions. “So, where did you get this gun?” he asked. He did not want this gun to be able to be traced back to him. So I assured him that it could not be traced back to him. I explained that I made up the fact that I found the gun in my backyard while I was mowing. “That’s good,” He said. As he left, he said, “Let me know if you need anything else.” I thought to myself: how about we hang out for a bit? I longed for human interaction. I sat on the couch looking at this thing for a while. I put it on my lap and began to weep thinking of my plans.

I continually kept that “hunk of metal” on my mind. I would often go into the bedroom and look at it. I would regularly pick up the gun to make sure that it was loaded. Then one day I brought it out and set it on my lap. I kept hearing this voice in my head reminding me that I was alone. I sat there thinking about the best way to do this. Is it better in the mouth, the temple or under the chin? One minute I’m holding this thing up to my head with my finger on the trigger. The next minute I’m crying because I can’t do it. Life felt hopeless.

One day I got excited because my friend and his wife were coming to visit. Life is better with friends. I can make it. Friends make you stronger. I see them maybe once a year, but still, they are friends. When they arrived, we sat in the living room. He and I talked as his wife looked around. I could see the judgment on her face. She said, “You’re lucky. I would love not to have to work.” I kept quiet because I didn’t know what to say. I wanted to tell her that I would trade my situation for hers in a heartbeat. I needed to explain to her that you would not think that I was lucky if you understood that I rarely see friends or family. I wanted to say that it honestly hurts to be alone. However, I said nothing.

They stayed for about a half an hour before they left. Was I excited for this? This visit did not have the positive impact that I thought that it should. I thought that if I got to see friends if I got to see people, I would feel better, but I still hurt. This is not friendship. I felt like the walls were closing in. It felt like the air was thicker making it hard to breathe. I wanted it to stop. The pain was unbearable. Pressing the cold metal of this gun against my temple, I could end this hurt. I could eliminate the loneliness. Every time I thought I could do it, but no. I felt like a coward again. I cried myself to sleep that night.

Let me say this so that I can take a breather. I know that I am in a better situation. This story is still difficult to tell. I’m much stronger than I was back then. I read how talking about a tragic situation like this could be beneficial. It was told that writing this story down could be helpful to the writer as well as the reader. When I wrote this blog entry, there were plenty of stories that I just could not discuss. There is a stigma to depression. I did not want to tell my story because I did not want anyone to judge me. I did not want people to look at me like I was weak. However, a friend reminded me that some people are going to judge you no matter what. She explained that my story shows people that life is not all “kittens and rainbows.” I am glad that I am here to tell my story.

Although my depression lasted nearly ten years, the suicidal depression persisted for only seven years. These are just a few of my stories. I could not put them all in this three-page blog. All in all, I missed my 30s because of this feeling of deep sadness. Time seemed to drag on. During this dark time, I rarely saw doctors. A doctor visit seemed useless since I did not know how long that I would be on this Earth. Gradually the darkness began to lift enough for my mom to notice. She quickly got me connected with the Stephen Minister program at GCUMC. After nearly a year my Stephens Minister invited me to the church. People at the church welcomed me with hugs and handshakes. I felt the love and kindness that I had not felt in 10 years.

If you, who are reading this are going through darkness of your own, hold tight. I know that it is difficult, but search out a church or a social group. Find people who will welcome you and love you for who you are. Kindness, love, and friendship will fill all of those places in your heart that were hurting. I promise that you will find that. I have been where you are. Just hang on.

If you are lucky enough not to know what it is like to be surrounded by darkness, I am telling you that someone near you needs your support. They need it today. They need it desperately. Share your kindness. Talk with them, and get to know them. Trust me-compassion is all it takes to save a life.

My untold MS story (part 2). The confusion of chaos…

About a week after the tests, my primary care physician called me into his office. In a calm and clear voice, the doctor told me “You have Multiple Sclerosis.” My next question to him was simple: “OK doc, what’s next?” I could not have expected what was to come. The next two years were hectic and chaotic. My MS life has always been a constant learning experience. I have continually had to remember: “Adapt and overcome.” I have also needed to get used to the fact that: “The only constant in life is change.”

Right away the doctor put me on an intermuscular injectable MS medication. For the record, I genuinely dislike needles. Sadly, at that time all MS medications were injectable. I began doing a lot of research on MS. It seemed that everyone had a cure for this autoimmune disease. Let me let you in on a well-known “secret”: there is no cure for Multiple Sclerosis. However, I found many scammers out there. Surprise, surprise, right? Usually, they want you to buy their product. Here is a funny story: There was an owner of a skydiving company who told me that skydiving helps MS. Yeah, sure! I did the research just to check. However, other than him at that moment, no one had ever made that claim.

The internet and I had a close relationship for a long time after that. I learned everything that I could about MS. In my quest for this multiple sclerosis knowledge, I quickly learned a lot. I learned about the shysters and charlatans that are out there. I learned about the correct and incorrect information and the differences.

I was now unemployed. Unemployment required me to live off of my savings. Once I moved out of my mom’s house after high school, I never again asked anyone for money. So at this point, I had to learn “creative money management.” My mortgage was always paid on time as that was where I lived. I knew that if they cut my electric or gas, I still had a place to sleep. My utilities would be paid late sometimes, but never was I threatened with a shut-off notice. Primarily I lived like the downtrodden. I wore clothing that was old and made me look like the homeless. However, I had a few nice-ish articles of clothing that I could wear to my doctor appointments. I kept my house at an uncomfortable temperature no matter the season. I am an Eagle Scout and a US Marine, so I am not afraid of camping in bad weather. I had 40 watt light bulbs in a few places around the house. Most of the time, I just walked around my house in near darkness. I did everything that I could to keep from spending money needlessly.

I ate very little food. At this point, my weight had fallen below 100 pounds. The doctors would always ask me if I was eating. I never lied and would always say “three meals a day.” No doctor ever asked me how much food was in each meal. For breakfast, I would have two ounces of cereal with powdered milk poured on top. I may have a can of corn with some Italian dressing for lunch. Then for my evening meal, I’d possibly have 8 ounces of mac-n-cheese. If I got hungry after dinner, I would have a couple of multigrain saltines. I soon learned that the stomach only growls for a day or two. Food is a survival thing, not really about taste, though that may change someday. I always weigh my food even to this day.

I found that my diagnosing doctor had terrible “bedside manners.” It was Thanksgiving week. During my appointment, the doctor’s cell phone rang. He then picked the phone up, and he held up one finger telling me to hold on. At this point, he stepped out of the room for five minutes. When he returned, he explained that he had to set up some holiday dinner plans. After that appointment I left his practice, never to return. I “doctor-hopped” for a while trying to find a good doctor. I have met plenty of people with MS. The one thing that many of them say is that they were unhappy with their doctors. I am bewildered because I could not understand them. I did not comprehend why they did not leave the doctors that they did not like. I suppose I am just pickier than most. However, if I am going to pay a doctor, he or she must have excellent bedside manners. Besides, there is a relationship between you and your doctor. It is a discussion between the two of you. Give me options, and the pros and cons of each. At this point let me decide. It is your medical degree, but it is my body.

After I left my diagnosing doctor, my search continued to find a new neurologist. Finding a doctor is like finding a friend. There are a lot of great people out there, but not all of them are “friend worthy.” Of course, it is essential to make sure that they take your insurance. It is also good if they are close enough to your house. Accessibility is often an overlooked requirement. I saw one doctor who had one step and a makeshift ramp that was too small. You needed to have someone go to the lobby to get this ramp for you. When you place this ramp on the ground, you had about twelve inches to turn. If you did not make this sharp turn, you would go off of the step. Apparently, safety was never a consideration.

This two year period was full of doctor appointments, MRI’s and weird MS symptoms. It took me a while to find a doctor that I was happy using. This two-year time frame was also extremely chaotic. Between finding an acceptable doctor and learning how my MS would affect me. Things just did not make sense. It was like trying to get directions from a person who does not speak English. Sure you will get there, but you will make some wrong turns along the way. Of course, all of this caused me stress. By the way, stresses and MS are mortal enemies. These new stresses cause more MS symptoms which cause more stress. It was and is a vicious cycle.

I was “learning” my new MS body. I had these strange symptoms, and I did not know how to deal with them. I was extremely temperature sensitive. I had weird symptoms like extremely itchy hands. That one sounds silly, but it was much worse than you are thinking. Those silly itchy hands sent me to the ER. My walking had become extremely unstable. However, I was too stubborn to get a walking aid. I was always able to simply push myself when I “hit a wall” pre-MS. MS was new to me and now “pushing myself” had devastating outcomes.

I avoided everything because I did not want to be a burden to anyone. Things were starting to go downhill. My attitude was getting worse. I was very grumpy, and I had a very short temper. A depression had begun to settle in. I rarely saw my dad. My sister, who I saw even less often, said that she did not like the person that I had become. She avoided me like the plague. I saw my mom twice a month when she had me over for dinner. However, like a gremlin that someone spilled water on, the worst was yet to come.