Month: July 2019

Pumpkin Time

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Cinderella has a midnight curfew when the illusion ends. The carriage turns back into a pumpkin, the gown back into rags. I have pumpkin time too. Right now it seems to be about 3 hours. Three hours is the amount of time I can be out in my cooling vest before I become absolutely exhausted.

Yesterday, I pushed it. I did my long run in the morning (without cooling vest because it was only 60 out). Then, I was outside in the heat for about 2 hours doing yard work. Thankfully, I have a really awesome person who helps me with yard work, otherwise it would take me an entire day. 

After my two hours of yard work, I was inside resting and having lunch. Yesterday afternoon, it was in the 80s, and I used my cooling vest to spend 3 hours at an outdoor birthday party. It was great, but I got tired fast. I felt like a pumpkin because I kept to my 3 hour time limit, afraid if I pushed it longer, I would not be okay to drive home. Just like Cinderella, the illusion would end at the appointed time. In my case, the illusion is “normal human being.”

I really appreciate the cooling vest so I was able to be there for the 3 hours like normal person. Without it, my body would have had the “drunk” symptoms and I definitely would not have been able to drive home. I told someone this week that I am a cheap date. There is no alcohol required for me to feel drunk – all I have to do is hang out in the heat for awhile with no cooling vest and my body will have all the symptoms. I do not understand how I was able to cope the past few years before I got the cooling vest.

Earlier this summer, I had posted about wanting to say “yes” more. The cooling vest gave me the ability to say “yes” to going to a birthday party without having to worry about my symptoms. Without the cooling vest, I would have been less likely to go because I cannot handle the heat. 

I should be thankful for my pumpkin time. I have not had a summer this good when I have been this functional in a really long time. But it’s hard. I know how good I used to be, and I don’t think I will ever be at that level again. I have brief – maybe 5 minute – moments of normality when I think I can do it all, only to realize I can’t. My 5 minutes of normality usually comes when the cooling vest clears my brain fog. Those moments are fleeting.

This morning, while listening to another of my favorite radio programs, the Sounds of Sinatra, I heard a commercial for little red and yellow pills for a male dysfunction disorder. It got me thinking about the red and blue pill dilemma in The Matrix. 

We have a similar scenario in the running community. In the online running forums, one of the games we like to play is discussing this red/blue pill scenario. In running, we usually say that the red pill will allow you 5 amazing running years of reaching PRs and breaking records, followed by 10 years of not being able to run anymore. The blue pill would allow you 15 years of being able to run continuously at an average level. 

I have always responded to this that I would take the blue pill. I would want the 15 years of running, even if it was only at an average level. I cannot imagine not being able to run. I would take the illusion to be happy.

However, now that I am experiencing this situation in real life, I’m not quite sure. It currently appears I have been handed the blue pill. I am functioning at an okay level. I’m not as good as I was, but not horrible either. I know there are people who “have it worse,” but that doesn’t help me  at all when I am the one trying to live THIS life in THIS body. 

Mainly, I’m just tired. I wish pumpkin time could last for an entire day, not just 3 hours. Maybe in time, I will get there. It would be no problem to continually recharge and change the phase change packs in the cooling vest so I could wear it all day. The problem is that my body physically gives out to exhaustion after about the 3 hour mark. 

My goal over the next two years is to hopefully be able to extend pumpkin time to 5 hours. I want to be able to run a full marathon again. Right now, I am pretty sure I am okay to run my half marathon this fall. The big question is that I want to be able to run another full marathon, and I don’t think my body will cooperate for it. My body betrays me. 

While most people this summer are popping a top proclaiming “miller time,” “molson time,” or “whatever your poison time,” for me, it is putting on a cooling vest for pumpkin time. I have about 3 hours a day to be normal before exhaustion claims my body – what will we say “yes” to today? 

 

That Thing Won’t Make It Better

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Go ahead, you deserve it. That message is pervasive in advertising in a litany of various incantations. Want to look and feel younger? Get the sports car. Want to feel attractive? Buy this dress. Bad day at work? You deserve ice cream. Good news? Time to treat yourself.

We all fall prey at some point or another to the allure that we deserve this thing or that buying an item is a reward. However, once the item is bought, the excitement wears off and we are on to find the next quick fix. This is how our homes become cluttered and our wallets become empty.

I admit that I fall prey to this phenomenon myself. It’s even harder now that I am a homeowner. It is challenging to differentiate sometimes between buying something “for the house” and buying something for me. 

For example, this past winter, I bought a new comforter for the spare bedroom. Was that for the house or for me? I put comforter for the spare bedroom under the category of “house” because I do not personally use that room. However, this Christmas, I am looking to purchase a new comforter for my bed to replace my 22 year old comforter, and I put that under the category of “for me” as opposed to for the house. I also have a tendency to prioritize house things over items that are just for me.

The bottom line is, that thing won’t make it better.

I currently have a perfectly fine 22 year old comforter. It does not need to be replaced. I take it to the laundry-mat every so often to wash it in the big machines and sew places where it needs mending. I may want a new comforter, but I do not need one. The only thing that a new comforter is going to do is temporarily increase my level of happiness and make my wallet a little lighter.

I actually want to buy a new comforter right now. I don’t want to wait for Christmas. The summer colors and patterns are available, and I like them more than the winter colors and patterns. I’m sure I can work up reasons inside my head to justify the purchase. I deprive myself of even small pleasures to focus all my resources on the house. I have had some majorly bad news. The comforter I want is currently on sale. I can come up with reasons to buy it now.

The thing is, buying it now won’t make anything better. Instead of spending money on a comforter, I need to take that money and buy paint to paint the woodwork around my house windows. I have work that needs to be done on the car. I should get more money into my savings account before making a major purchase. I struggle with grocery money with multiple food allergies.

I have plenty of reasons why it is better to wait to buy a comforter sometime in the future instead of buying it now. In fact, buying the comforter now will not only NOT make things better, it would make things worse. I would be behind on other items I need to purchase for home maintenance this summer. 

Many times I think we purchase items based on emotion. I deserve a treat. In the long run, a thing won’t help. Treats are nice occasionally. However, in today’s society it seems treats have become an every day thing.

Maybe if we want to treat ourselves, we should choose treats that aren’t things. Go for a walk. Meet a friend for coffee. Take a child to the movies. Those are the types of things that will make it better. You will have the memories of spending quality time with someone to keep coming back to over and over again.

One of my new goals for this summer is to practice saying “yes” more. As a minimalist, I have gotten really good at saying “no” in an effort to slow down my life and make it more manageable. While I still do not want to be overbooked, over-scheduled, or worn out, I think that saying yes to more experiences will make life better for me in a way that things just can’t.

You deserve time with friends. You deserve time with family. You deserve to see the sunset over the lake. You deserve to see the sunrise on the hood of a car parked near a beach. These are experiences we typically do not see advertised in the media, but are the treats that really will make it better. 

That thing won’t make it better because things come and go. People come and go too, which is why we need to spend time with them while we are here on this Earth. The next time you think “go ahead, you deserve it,” think about what you are saying yes to. Ignore the car, the dress, or the perfume. Say yes to the birthday party, the bonfire, the hike through the woods. That thing won’t make it better. Time with people will. 

Home of the East Wind

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As we read the book of Job, we see a man with great integrity who has everything taken from him by Satan. In Job 1, God gives Satan permission to test Job with the caveat: “Do whatever you want with everything he possesses, but don’t harm him physically” (1:12). We then hear Job and his friends talking about the adversity he is all of a sudden experiencing in life.

Finally, in Job 38, the Lord challenges Job about his complaining. In Job 38:24, the Lord asks “Where is the path to the origin of light? Where is the home of the east wind?” These are very big questions. I certainly don’t know the answer. God asks these questions to basically say that us humans on Earth are not able to comprehend the extent of God’s power. God created everything. We can’t answer all of those questions.

I may not know where the home of the east wind is located, but I do know that the sun rises in the east and signifies the start of a new day. Each day is a new opportunity to try to live life the best that we can. To this end, I ask, “what gives your life meaning?”

We may not know where the home of the east wind lies, but usually when the wind blows, that signifies change. What is the meaning of your life and what needs to change?

These are very big questions and they can get really intense.

I’ve had many changes in my life recently. Use whichever euphemism you want – a new day, the winds of change blowing … what I have come to realize is that my entire life has changed in a drastic way over the past three years. I have experienced at least 8 of the 10 major lifetime stressors during that time. I have also been grieving at least four different extremely significant loses.

A light bulb recently went off in my head. When life feels really overwhelming and there is a lot going on, the best people are able to overcome and plow through by slowing it down.

Simplify the situation and it is easier to deal with.

In Job, we read 42 chapters of trials, tribulations and complaining. Then, the entire situation is simplified, solved and ended with one statement. “I take back everything I said, and I sit in dust and ashes to show my repentance.” – Job 42:6.

Sometimes we have to just sit down and simplify life to deal with it.

I have been on this journey to simplify my life and it wasn’t helping. It wasn’t hurting either. Simplifying my life allowed me to face my trials these past few years without losing my mind. That’s a positive. However, it did not help to give me a direction for improvement.

When I read Job 42:6 about sitting in dust and ashes to show my repentance, I think that it is all about getting back to basics. How can I be the best me I can be? How can you be the best you that you can be? You can sit there and complain and wallow about adversity, or you can sit quietly and come to a peaceful conclusion.

I realized that I have been drifting since I finished school in 2015. I spent 20 years as a college student and now that I am done, I have no direction in my life. I have no passion. I have also been in a period of grief, as I have experienced at least one major loss in my life each year for the past four years.

It’s time to get back to basics. I need to focus on my health, running and nutrition. I need to have goals. My half marathon this fall is a good goal. I need more goals for when my race is over.

For the first time, I think I’m done grieving, so hopefully I won’t have any more losses any time soon. I kind of get what Job was lamenting. I have lost a lot these past few years too.

The east wind comes to remind us to be the best we can be. What gives your life meaning? How can you set new goals and move from a place of brokenness to a place of repentance and peace?

I have no idea how to redirect my life now that I am no longer a student. I need a new goal other than “survive.” I am going to start with focusing on my health, running and nutrition, but I know I need something bigger than that.

Maybe in the silence, something will come.

4 years, 1 month, 28 days

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Normal (noun): The usual, average, or typical state or condition – as defined by google.

I’ve had this un-diagnosed neurological condition since at least 2016, but probably longer. 2016 was the year I was in the hospital and my symptoms not only worsened, but whatever disease I have decided to ramp itself up to the Next Level like a video game on steroids.

First, I was told it was a stroke. Now, they are looking for multiple sclerosis. I’m having problems getting medical care, which does not make life any easier.

Going with the idea that I might have MS, pending neurology confirmation, I ordered some MS cooling vests to see if they would help at all with some of the “imaginary” symptoms I get when it is hot out. Imaginary is according to the primary doctor, who does not seem to take me seriously (even though she was the one who referred me to neurology).

I took great care to measure myself for the MS cooling vests and I am glad I did. When I put one on, I discovered that the phase change packs were situated so that there are two on either side of my spine. I say phase change packs because that is what they actually are – these are not ice packs, but some other technology. The placement of the phase change packs is key to their efficacy, which we will get to in a moment.

I wore the cooling vest for my run tonight. I had this idea that it would just keep my body cool similar to air conditioning. Boy, was I wrong.

But I was wrong in the best possible way.

Those phase change packs are situated on both sides of your spine not to cool your body, but to cool your central nervous system. Apparently, in people with MS, if that is what I have, heat causes your nerves to misfire. By cooling the central nervous system, your nerves are less likely to misfire, and you are less likely to have heat-induced symptoms.

My central nervous system was definitely cooled by the cooling vest. My spine was cool. My brain inside my head was cool. It was the weirdest but also the best feeling. It felt similar to an ice cream headache, only without the ice cream and without the headache. I did not have a headache. Nothing hurt. Yet my brain inside my head physically felt cool while the outside of my body was sweating buckets.

It was 86 degrees out when I went for my run. Not the best running conditions, even if you do not have a neurological problem.

It was the best run I have had in 4 years, 1 month and 28 days.

It’s been a long time since I have been this happy to be that miserable.

I was sweating buckets. I was uncomfortable. But it was a “normal” uncomfortable. It was the type of uncomfortable that you get when you run 4 miles in 86 degree weather like a crazy person. It was the best feeling.

What made it so great was that it was the first run I have done in 4 years, 1 month and 28 days where I did not experience any of these neurological symptoms while running. I was not dizzy, I did not feel like passing out, my vision was not blurry, my vision was not black, I did not trip, I did not fall. I had no brain fog. I was able to think clearly for the first time in a long time.

I felt normal.

I felt like any other idiot running 4 miles in 86 degree weather, because, really, you shouldn’t do that.

I basically wanted to see if this cooling vest would work. It does. It doesn’t work in the way I thought it would work. It works even better than that.

I thought that the cooling vest would cool my whole body down and kind of give me a competitive edge to run in that heat. The vest did no such thing. The vest cooled down my central nervous system so that I could run normally. I had no neurological symptoms. I was just a crazy runner sweating buckets on the outside. Only my spine and my brain inside my head were cool.

The cooling vest makes me normal per the definition at the beginning of this post. The cooling vest puts me back on level playing field again. It was just me and my body pounding the pavement on the road minus all neurological symptoms.

Now granted, running in 86 degree weather is completely stupid.

The point is that if the cooling vest lets me run normally again, what else can I do like a normal person that I have not been able to do for the past four years?

I’m excited to find out.

I want to surf. I want to drive further than 8 miles. I want to be able to go back to the beaches. I want to go to a baseball game without getting all these neuro symptoms where my body feels like it’s drunk when the only thing I have had to drink all day is water with lime slices in it.

I want to feel like a normal person and not have my body betray me every time I try to do something.

Tonight, I had my first normal run in 4 years, 1 month and 28 days. I cannot say how grateful I am to have this cooling vest. I feel like I might be able to actually get my life back.

With the doctors around here being absolutely stupid, I may never find out whether or not I have MS. Whatever it is that I have, this MS cooling vest is looking like it is alleviating all my heat-induced symptoms.

I can’t wait to use the cooling vest more and see what else I can do like a normal person again. Summer is one of my favorite seasons and I have not been able to enjoy it for years.

Bring on summer. With my MS cooling vests, I’m ready.

Update:

So, I’ve had some people ask me about which cooling vests I chose. I went with these really great vests called Under Cool from Therm Apparel in Rochester, NY. Many people have asked me recently if I’m wearing my vest because they don’t see it. Yes, I am wearing it! The fact you can’t see it is the whole point!

The Under Cool vest goes under my shirt. As a runner, I chose this vest because it weighs just under 2 pounds. Other cooling vests I researched were about 6-8 pounds. When I run 26.2 miles, I don’t want to feel like I’m in Marine boot camp lugging around a bunch of extra dead weight.

Sizing was a huge selling point for me. I weigh about 96 pounds. Most cooling vests I researched were bulky and only available in S,M,L sizes. Under Cool was available in XS (which I have), as well as youth sizes. Some of my baseball shirts are actually youth sizes, so having a wide range of sizes was key. Measure carefully, and your vest will fit well. XS is doing it for me.

Please note, I do not usually push specific items, but since you guys have asked, it is definitely Therm Apparel. I have not received any sort of compensation for giving them a plug, but if you need a cooling vest for neuro issues and run marathons like I do, then this is the vest for you! I also got the “adventure bundle” so I have one vest for running and one vest for “every day use.” I have two sets of phase change packs that allow me to be out longer. So far, I have only been out in my cooling vest for a maximum of 3 hours, but that is only because I get so tired.

I will be sure to post another blog on my vests!