Isolation Log: Covid Date 3.a.20

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Simon sitting on the rollator to bird watch when the rollator is not in use.

It has now been 10 days since I have had human contact. Now I know what my cats must feel like when I go on my 3-day marathon or camping trips. At least when I am gone, they have each other. I am thankful to be home with them. I am able to go out into the world (generally – pre Covid), but for my cats, the house is the only world they have. Now it is mine.

Good news, is that since I am surrounded by three adorable felines, I can say with confidence that there is intelligent life here. 

A good friend dropped off feminine hygiene supplies to my door the other day. They were much needed. Even though I ordered supplies online, delivery times are slow. That is even if items are in stock. Many items I am looking for are out of stock online. I have enough supplies and do not need help for now – but I will. Some items say that they are only available for purchase in stores. The problem is, my primary doctor told me I should not go to the grocery store or pharmacy because those are high-risk areas for me.

I have been getting creative with food. I now know four different ways to cook carrots. No, I am not hoarding carrots. They were on sale 2 / $3 the last time I was able to go to a grocery store, so I ended up with four pounds of them in the house. Today I will be making allergy-friendly carrot raisin muffins that will be my breakfast for the next few days. 

I am re-learning the difference between wants and needs. I have enough supplies. I have food. I have things I need. I want zucchini. Do I need zucchini? No, I can live without it. I am thankful for what I have. There are a few things that when this is all over will certainly be a real treat to have again. I did need those feminine hygiene products though, so I am grateful someone dropped them off for me. That was a need. 

I took the car out for a drive this weekend. I know from when I was in the hospital a few years ago, that the car needs to be driven once a week to keep it going. It was so weird to just drive for no purpose. I have not done that in a long time. I really need to get the snow tires off the car. We are supposed to get more snow this week, so I guess it’s fine for now. Nothing I can do about it anyways.

Sunday I had a great 3-mile run in between raindrops. We had a violent thunderstorm last night and almost lost power. In the past week, we have gone from snowstorm to thunderstorm back to snow. It’s central New York. If you don’t like the weather, wait 10 minutes and it will change.  

For minimalism, I worked upstairs this weekend. I have a few boxes of things ready to be donated or leave the house in some way when this is all over. They are in an empty room upstairs. I was able to create an empty room and an empty closet this weekend. I’m one person. I only need to use one closet. I was finally able to achieve this. 

I have been using my rollator (4-wheeled walker you can sit on) more. This is definitely not the time to be falling down and hurting myself. Yes, I am still running, but I am having more bad moments than good moments. I have only taken my rollator out in public with me once, but it is going to have to happen more often.

People think it’s weird seeing a marathon runner with a rollator. One day I will be running, then the next day I will be rolling. That’s just it, though. 

On good days, I run. On bad days, I roll.

The next time I have a bad day, I am going to take my rollator with me for my daily outside time. I went out the other day without it. I was having a bad day. It was not good. I avoided a fall, but did not get very far before I had to come back. 

To be honest, I’m worried about being judged for using it. The very reason is that one day I may be running and the next day I may be rolling. I know how people think about things like that. 

One thing I’ve learned over the past few years is that I no longer control my own body. Any day I am on the road, it’s a good day.

On good days, I run. On bad days, I roll. Every day with my cats is a little piece of heaven.

Stay strong out there. #NYTough

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!