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? 

 

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!