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.

6 thoughts on “My untold MS story 4. A new beginning…

  1. Wow. Just, wow. That was an amazing series. Thank you for everything that you shared about your life and about MS. It was very enlightening, as I knew next to nothing about MS. I wish you the best of luck with your move as well!

    Liked by 1 person

      1. You’re welcome! It is nerve-wracking and hard to share such personal details about our lives– especially in such a public place as the internet. I am sure that it will help many, whether it helps those with MS or those without!


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