Category: Helpful Tips

Staying warm with muscular dystrophy

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I am in a constant battle with family and friends over indoor temperatures. During winter I am freezing. During summer I am freezing. Basically I am always freezing and sometimes bloody after a hardcore fight over the thermostat.

Physically I notice that my body works better when it is warm, so I have come up with some personalized solutions to keep myself defrosted and thought I would pass them along. These are all fairly easy to implement and don’t impact others in the house as much as cranking the heat does. They’re also very low cost.

1. Space Heaters
The main thermostat in the house I share with my sister back in WI during the summer is upstairs. Combine that with the fact it’s a tri-level and I am in the lowest level and I am constantly shivering. Tri-level houses have notoriously poor HVAC systems. Hot upstairs, cold downstairs, and sometimes comfortable in the middle. Usually, however, I am the only one downstairs and I did discover that a good space heater can help me get control of the temperature downstairs. I recommend getting one in each room you spend the most time, however I have a small one on wheels in my office that I can roll around if necessary. It’s just a pain to unplug and plug back in all the time. But it’s light, quiet, and turns my office into a sauna. You can also put a small one right at your feet and nobody else in the room even has to feel it.

2. Electric blankets
I like to plug in an electric blanket and throw it over my legs if I know I am just going to be watching TV or something for a while. It’s easy to have an electric blanket or an electric throw on the couch or recliner that’s already plugged in and ready to go — just flip a switch and it’s warm in no time.

3. Electric mattress pad
I had one of these on a bed during high school and it was wonderful. I did discover that it could get too hot sometimes. I do recommend trying a warming mattress pad, however, because you might want full-body coverage. But for me, I discovered it was my feet that were usually cold at night. To counteract this, I fold a regular electric blanket in half and use it under my sheet on the bottom half of my bed. It keeps my feet warm and doesn’t overwhelm me during the night like a full heated mattress pad does.

4. Heat lamp in the bathroom
I do not have one of these but whenever I stay in a hotel that has one, I feel like a toasty chicken McNugget just waiting to be served. It makes the transition from a nice hot shower to a colder room-temperature bathroom much easier to bear. I do, on occasion, roll my portable space heater into the bathroom to heat things up while I shower and do plan on getting one specifically for the bathroom sometime in the future.

5. Hot water bottles / Heating pads
When I am traveling and don’t have an electric blanket or space heater at my disposal, I like to fill up a water bottle with hot water from the faucet and keep it on my lap. I have also packed a portable heating pad before, which works great for travel as well.

UPDATED 9/30
6. Heated clothing!
I just got a heated vest and love it. It was not cheap, but I know I will get use out of it. There are also heated pads, gloves, and other items that run off batteries. Check out my heated vest review here.

I would love to get a heated seat for my wheelchair and there is a power converter that you can get to plug things in. I am not sure how long this would last or if it would drain my battery completely but it’s something I’d like to try eventually.

Say no to underwear

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I’m not afraid to say it — I haven’t worn underwear in the years since I started using a wheelchair. I implore anyone who thinks this is unacceptable to try pulling up your underwear and pants while in a seated position and get back to me. (Remember, you can’t lift up both cheeks at the same time, either!) It’s a pain in the ass. Finally I was like, “Why do I keep doing this?!?!!” After all, we all know Britney doesn’t wear any. Why should I?

Either the underwear would bunch up and make it difficult to get everything in place, or I’d end up having to do the pulling-up hassle twice — first pull up underwear, then pull up the pants. It’s just such a waste of time.

Maybe I am not aware of the overall advantages of wearing underwear, but I have discovered a couple advantages to not wearing it, aside from making getting dressed much easier:

1. Cuts down on laundry.

2. Easier access for going to the bathroom.

3. Saves time.

4. Less packing when you travel.

I am sure there are others that I just can’t think of right now. One might be that you can get a wardrobe filled with brown and black pants and never have to see skid marks ever again. But I digress.

Motivating to shower

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Motivating to showerWhen you start to think it’s easier to endure “swamp ass” than take a shower, there’s clearly a problem. This was my problem and to be honest, I sometimes still find myself trading cleanliness for convenience. I do have a few motivating tricks to encourage myself to get into the shower even when I feel like it’s this big annoying chore.

When I was younger I would shower every morning, no matter what. Even though dirt had replaced the grout in our shower, once the water was on it was immediate relaxation and warmth. I never wanted to get out. Thankfully I started to turn on the metal wall heater on before I got in so I wouldn’t have to freeze when I got out. Overall, showering was a great feeling — and still is.

But as time progressed showering got more difficult for me. The place I was living in had a bathtub and lifting my legs over the sides of the tub got really difficult. Had I known about it at the time I would have gotten one of those tub cuts. But I was renting, so the best I thought I could do was grab bars. When my dad was out visiting I put him to work and he installed grab bars and an industrial strength shower curtain rod that was literally bolted into the walls. Then I could grab onto it for balance even while I was standing in the shower. (DO NOT DO THIS WITH A REGULAR SHOWER CURTAIN ROD!!!)

This solution lasted for pretty much until I started using a wheelchair, but I was already having difficulty even wanting to shower because it seemed like so much work. Despite the fact that I actually liked being in the shower and how it made me feel afterwards, showering every day turned into showering every other day.

Showering once I was using a wheelchair turned into another experience all together. Getting undressed took longer, transferring onto the shower chair took longer, transferring back took longer, getting dressed again took longer. It just got to be such a pain. Showering every other day turned into showering every three days.

Then I started traveling for tennis and wasn’t staying in places that always had an accessible bathroom. So I discovered baby wipes and could actually go for a week without showering. Really. Eventually I got to the point where I would have to start to feel extremely uncomfortable in order to force myself to shower. I mean sweaty ass, itchy skin, grossness in too many places. Sometimes this would take three days but other times it would take a week. It shouldn’t have taken this amount of mental and physical torture to get me into the shower.

So I made it a goal to shower more often, deciding that every other day was an acceptable goal. Eventually some psychological tricks came into play and if one of them didn’t work then I would try another one. It seems to have helped me create a more shower-filled pattern so I wanted to share them.

Make it easy.
If you take a step back and look at your showering situation, is it as easy as it could be? Is your shower chair easy to transfer to? Is the shower head maneuverable or always pointed properly at you so that you don’t have to mess with it? Do you have grab bars in places you need them? Making the process as easy as possible is going to make it easier to convince yourself to do it.

Imagine how you’ll feel after the shower.
Whether you haven’t showered in a week or you just showered yesterday, a shower adds an almost instant mental boost. You feel clean, you feel some energy. You might feel more relaxed. If I am having trouble motivating I put myself into the future and think about how it will feel to be done. This usually makes me feel even more dirty than I felt prior to imagining it and gets me in the shower.

Make plans with people.
The times when I wasn’t showering very often I wasn’t necessarily around other people often enough to feel self conscious that I might smell gross. But I noticed a pattern that when I would make plans with people to go to dinner or a movie or something that involved being in close proximity, I was more likely to want to get in the shower.

Reward yourself.
On occasion I have found it effective to tell myself, “Okay if you get in the shower right now you can  go eat ice cream. It sounds childish and silly but it has worked on occasion.

Make it comfortable.
I have started using my phone’s music player and external speaker to take music with me into the bathroom. It’s now part of my routine. I also like to make sure I have some good smelling soap or body gel. The most important thing to me is a good shower head. I have a two-headed shower head that actually ends up showering me in more places at the same time. It’s great.

You might be able to come up with some of your own motivators as well as the above. I have a really good success rate now with getting myself in the shower. I feel better, happier, and of course cleaner.

Grumpy disabled people

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Grumpy disabled people are annoying. Sure, maybe they have a reason to be grumpy, but the fact is I know people with all sorts of disabilities that are happy as clams, including myself. If we can be happy, anyone can be happy. Grumpy disabled people take note — I don’t think you’re any different than grumpy able-bodied people. You’re all annoying whether you can walk or not.

We all have our grumpy moments, so it’s never a safe assumption that someone’s grumpy after one interaction. But after repeated interactions that elicit grumpiness, you are safe to say that person needs to lighten up.

I don’t care if your disability was caused by someone else, or the result of a war injury, or if you were born with it. I really don’t. If you’re a grump, you’re living life all wrong. Grumps make it difficult for everyone. They increase the stress of people around them. They give happy disabled people a bad name. But most of all they’re hurting themselves. A negative attitude exacerbates or creates health issues. It drives people away. It makes people less likely to want to help you.

If you need help wiping your ass, you better put a smile on your face.

There are many cause of grumpiness but all have some sort of “cure.” If you’re depressed, seek therapy and anti-depressants. If you’re in pain, seek pain management care. If you’ve got a chip on your shoulder, change your attitude. If you feel as though you’ve been wronged, practice forgiveness. If you make the choice to deal with your grumpiness and still have no luck, I credit you for trying — keep trying. But if you haven’t made any effort, then this is a choice to remain grumpy and annoy all the rest of us.

Choosing to be happy is much more rewarding.

There’s more than one way to win

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In grade school we used to play a game called “Steal the Bacon” in gym class. It involved splitting into two teams, assigning each kid a number, and sending the teams to opposite ends of each side of the basketball court.

The teacher would put an eraser, or the “bacon” in the middle of the court. At random, she’d call out 1 or 2 numbers and the kids with the called numbers from each team would run out to the middle of the court.  The object was to grab the bacon and run back to your team’s end line without getting tagged by your opponents. Any of the called numbers could steal the bacon and if you made it back, your team got a point.  However if you got tagged, the other team got the point.

I hated this game. Hated it badly. I was a slow runner so I would either ALWAYS get tagged or NEVER catch the other person. I hated it.

That was until I figured out how to win in a different way.

Even though I was a slow runner I was usually just fast enough to get out there so that the “face-off” would still happen. This was the moment where you are both circling the bacon, waiting for the most opportune time to steal it. Most kids wanted to steal the bacon — myself included. But here’s where I changed my strategy.

I never tried to steal it.

Since you could get a point by tagging the stealer, I set my sights on tagging the other person the MOMENT they grabbed the bacon. So I would hover over the other person, just waiting for them to try to steal it. Eventually they would make the mistake of going for it and my hand was there to tag them immediately. It didn’t work every time but it worked most of the time.

I went from never winning to winning about 75% of the time just by changing my strategy.

This is true for many things in life. By changing the way you look at something or changing your definition of success you can often change a losing proposition to a winning one.

So whether it’s a physical chore like getting up from a chair or your job or a course that you’re having difficulty with — take a moment to look at the problem differently. How else can you win? Can you redefine what it means to win by changing your goals?

Remember, you don’t always have to steal the bacon.