Staying Motivated 9/26/2016

Staying motivated can be hard for anyone, not just those with a chronic illness. I have found it hard over the past week to keep my motivation up for school. I have found excuses to do something other than study, or work on homework. I have still gotten everything done, but it is not my best work.

Thankfully over the past couple of days I have been able to get out of that slump. It has helped a lot living with other people who are going through the same thing. I live with six other college students. We took one of the unused bedrooms in our house and turned it into a study room. So, when I have something to do, but no motivationkeep-calm-and-do-your-school-work-3 to do it I will just go sit in the room with them while they are working. I do not give myself a goal, and usually I start off by procrastinating, but eventually I find that I am working. Being around people who are being productive makes me want to do the same.

Another thing that helped is that I am really enjoying the book I am reading, Heir of Fire by Sarah J. Maas. I tell myself that I can read for a half hour after I work on school work for an hour. I learned that if I give myself time limits my work is better. I can write an essay in a half hour, but I am guaranteed to get a better grade if I take at least an hour to write it and then another hour to edit it. As long as I am working for the whole hour I am satisfied, then I reward myself with a half hour of reading time. I have found that I actually end of reading for less time, because my mind is still on my school work. So, I put the book down and get back to work having found my motivation.

I also work wherever I am. No one said that you are going to get a worse grade just because you wrote your essay on the couch instead of at a desk. My feet go numb if I am sitting at a desk for too long, so I end up getting most of my work done in bed or on the couch. As long as it is getting done and I am putting in the proper amount of time I try not to get down on myself too much for not being able to get up.

I work the way that works for me.

 

~Maddie

My Body, Chronically Ill

Lately I have been thinking a lot about how chronically ill people say things like “when I do this my body…” or “my body does…”. It is like we separate ourselves from our bodies.

Our bodies are the things that are sick and constantly failing us, and we are the bright and cheerful person that is trying to life life to it’s fullest.

I think it is a coping mechanism. It is a lot easier to think that my body is the thing that is sick and always in pain, and I am just the person trying to deal with it.96c7ded75615b8889b6dcdf5373415b4 This way I don’t get mad at myself when I can’t do something because I don’t feel well. It is my body that failed me, not me.

Explaining this to people who don’t have a chronic illness can be hard. I have found that if they are around you for long enough they start to adopt that terminology as well. Most of my friends now ask me how my body is feeling, rather than how I am feeling, because most of the time they aren’t the same. I am constantly telling them the next symptom that hit me and ending with a simple “my body is weird.”

It is harder when you have an invisible illness. When I feel sick I look fine. Some days I wished I turned purple or something when I didn’t feel well. That way people wouldn’t have to ask how I felt, and I wouldn’t contently be trying to explain how much pain I am in. Other days I am glad that what I feel isn’t reflected in my appearance. I can go to class feeling horrible and not draw attention. I can go to work and interact with people and not get asked over and over if I am alright. It is a blessing and a curse.

Don’t let someone try to define your pain for you. If you have a headache and need to curl up in the dark, don’t let anyone tell you that it can’t be that bad. Only you know your pain and what it takes to make it better.

 

~Maddie

Coping With Music

I have always been bad at expressing my emotions. I never learned how to work through them so they don’t eat me alive. I have worked through various bad coping mechanisms, but what I found works best for me is music.

If I am sad and don’t want to deal with the world, I put my headphones in and blast music. That way I am focusing on the music and not what is making me sad, or that I have no idea why I am sad. I used to play depressing music when I was sad, to help me feel the sadness, because for some reason I thought I deserved it. Now I play uplifting music when I am sad. This helps me realize what is good about my life, what I am doing well. It helps me remember that the sadness will pass, and it doesn’t encompass my life anymore.

When I don’t know what I am feeling I look through YouTube and Pandora until I find a song that seems to fit what I am feeling. It is easier for me to decipher what the song is feeling than it is for me to be like “Oh! I’m frustrated!” Doing this also helps me feel the feelings, rather than stuffing them down until they explode.

I was raised around music. I started playing violin when I was three, and at home music is always playing, so it seems natural that I use it to cope.

I didn’t realize that this was how I was coping until one day I was doing chores and feeling sad, for no reason, and had my headphones in. My boyfriend was asking me if I was upset, he thought I was because he realized that I always put them in when I am upset. It is nice to know that people care.

 

~Maddie

Napping! 9/9/2016

I have been so tired the past few days. I haven’t been able to go to the gym either. My body has just been wanting to sleep and nothing else. I have still been able to get everything I need to do done, but it has taken me a lot longer to do so.

Also, my half hour naps have turned into two or three hour naps. I don’t really see a problem with that though, if my body needs the rest I am going to give it what it needs. If I don’t take a nap I end up falling asleep while doing homework, and that just isn’t pleasant.

I have also realized that my hands get really numb when I have been writing for a while. This makes taking notes not so fun. As I was doing research into alternative writing methods, my laptop is to big to bring to classes, I stumbled across fountain pens. They take very little pressure to write with, and are supposed to keep your hand from cramping up. I have always had an interest in them and this seemed like the perfect opportunity to try them out. I found a company that sells disposable ones, which seemed like the perfect way to start, and I didn’t want to pour a lot of money into something that I might not enjoy. They are supposed come today, I can’t wait to see how they work.

I didn’t ask my parents before ordering them, but when I did ask they were very supportive, as usual. My whole family has always been willing to do whatever they can to make life a little easier for me. For that I will be eternally grateful!

 

~Maddie

Fun Weekend 9/7/2016

This weekend most of the people I live with went home for Labor Day. So, my boyfriend and I went out and bought two Xbox games that we had been looking at. This is the first time he has been around an Xbox, so we are both still getting used to how it plays.

It was fun to play those when everyone else was gone.

On Saturday morning we made chocolate chip waffles, scrambled eggs, and sausage. It has become a tradition to make something good for breakfast on the weekends, because we both don’t have time to cook during the mornings throughout the week. It is also nice because he works Saturday, so cooking is something we can do together before he goes to work and I do school work.

Sunday we just hung out and played more video games. Just had a relaxing day, I wasn’t feeling too great, and he was happy to just relax.

On Monday he had rehearsal in the city, so we drive the four hours there and back. I didn’t mind going, I know the drive can be lonely, and I got to work on my homework while he was in rehearsal.

Even though we didn’t do much it was still a really fun weekend! The best part being that I wan’t tired when the school started again. Though after working out on Tuesday I was really nauseous and dizzy, so I just took a nap before doing anything else. I was planning on showering right after the gym, but my body had other ideas. Oh well, I still got everything I needed to get done done. And that night I was able to make mashed potatoes for my friends. Though, we don’t have a masher, so I mashed them with a fork and spoon. They turned out okay, with lots of salt of course! It I had pushed myself earlier in the day I wouldn’t have been able to help cook.

It’s all about balance when POTS tries to take it away from you.

 

~Maddie

Walking With a Heart Rate of 130

I have been recording my heart rate as I have been walking to class. It usually takes me about ten minutes to get from my house to class, and for that time my heart rate is around 130 beats per minute. Most everyone has experienced their heart rate going that high, but few have had that high heart rate while they are walking.

You feel the tightness of being out of breath, like you can’t get all of the air out of your lungs. It’s as though you are running, but not getting anywhere. The first time it really hits you, it can be scary. I am used to the feeling of breathlessness, the racing pulse, the dizziness.

What I try to do is just keep walking. As long as I am moving forward, and my legs are working I know that I won’t pass out. Once I get into the building my class is in, I take a seat. I give myself a few minutes for my heart to stop freaking out.

You will learn where all of the close seats are in the building your classes are in. One of my classes has chairs on each landing of the stairs, which is wonderful and a great idea.

For me, the longer I am walking the harder it gets to breath. It isn’t so much a tightness in my chest, but an inability to get air in and out of my lungs, like they have shrunk. I try and take deeper breaths and focus more on my breathing.

There have been a couple times where I have felt very dizzy and light headed when I pushed myself to walk too far. I simply sat down where I was walking, right in the middle of a bunch of students. I figured that was the better option, I’d rather not fall or pass out. So, I sat until I felt I could stand and then continued on my way, no harm done.

That seems to be the key to POTS, it will make you feel like crap, but there is no harm being done to your body. We aren’t dying, so why would anyone care?

Before I had POTS I didn’t think twice about how a persons quality of life can affect them. Now I think about it every day.

 

~Maddie

Working Out With POTS

At the start of the summer I started going to the gym with my boyfriend. I have always been an athlete. I grew up playing competitive soccer and tennis, so I am not new to working out. The feeling of being weak is new though, and I hate it. I hate not being able to do more than 10 push ups and I enjoy feeling strong.

That’s why it frustrated me when the doctors said that working out, for me, would have to be slow, not a lot of weight, and lying on the ground for as many exercises as I could do. I wanted to get my strength back, and I thought I couldn’t do it the way they suggested.

So, when I started going to the gym again I did what everyone told me I couldn’t do, lifted weights. I made it work by doing more exercises that required me to sit. When an exercise called for me to be standing I would sit in between reps. Doing this I can do up to an hour four times a day.

On the days that I don’t feel well enough to go, I simply don’t. Thanks to doing this over the whole summer and keeping up with it I have seen my strength return. I have a stronger core, and am able to sit up for longer when I don’t feel well.

I’m not trying to say not to take your doctors advise, in this situation I put off returning to exercising because I knew if I did what the doctors wanted I would still feel as though I’m failing. I had to do exercise my way.

Every day that I work out I feel like I accomplished something, even if i have to deal with a little headache afterwords.

Take that POTS.

 

~Maddie

Early Classes 8/31/2016

Early classes are starting to take their tole on me. I either have class or work at 9 AM each day. Every day I need to take longer and longer naps, I have had more mild headaches too. My hope right now is that because I don’t work on the weekends I will be able to sleep in, regain my strength. I have been able to work out for the past few days, so that has been good.

But now I have a mild headache. It’s nothing horrible, just this pressure that is always in the background. Despite this, when my friends wanted to go out to last minute ice cream, meaning we had twenty minutes to get there before it closed, I said yes. One, for the ice cream of course, and two because I am the type of person that wants to be able to say, “You can make me feel crappy, POTS, but watch what I can do despite that. Watch me make memories.”

I ended up not eating any ice cream though, because my stomach was feeling weird. I made up for that by making hot chocolate when I got back. Something sweet that my body can digest.

I pushed my body pretty hard today at the gym doing arm day. I was sick of feeling tired from just standing, and I was frustrated. I wore the heart rate monitor I have that firs around my wrist while walking to class today, and for the majority of the ten minute walk my heart rate was around 130. I plan on writing a post on what it feels like to be walking around with a high heart rate, so if you are interested keep an eye out for that.

I have started to view this, having POTS, not as something that is interesting about me, or sets me apart, but more as just something. It’s no different then my nose, always there, never going away. Some people will comment on it, most won’t think anything of it.

When classes start most make you go around and say your name and an interesting fact. I never say that I have POTS. To me that is like saying I have freckles. It is just something that I have to deal with. But, if someone where to ask me questions about my POTS, I am an open book. I want people to know what it is like. I want to raise awareness about the condition. Yes, it won’t kill me, but that doesn’t mean that it wont make my life hell.

 

~Maddie

When Meds Wear Off

To manage my POTS I take a beta blocker, which slows down my hear rate, and a vasovagal constrictor, which raises my blood pressure. For those of you that might know someone with POTS, and want to know what it feels like when their meds (medication) wear off, I will try and describe what it is like for me.

I take both my meds every four hours, and I can easily tell when they are wearing off.

The first thing I notice usually is that my whole body feels heavy. It’s like someone cased my hands and legs in cement.

Then the joints in my hands hurt and become stiff. When I look at my hands I can easily see the popping veins. That normally the first sign that the meds have worn off.

My vision becomes blurry. Not to the point where I am unable to see or read, but it takes more effort to look at something. Almost like I have to focus longer to be able to see things.

Then I get dizzy, and I have to walk faster from seat to seat. I have to plan my how I am going to get from one place to another, because I am unable to walk very far without falling or passing out.

Lastly I will get a headache after about a half hour of the meds wearing off. It usually starts behind my eyes and becomes an intense pressure behind the front of my skull. If it persists I lose the ability to focus on anything for a long period of time, it becomes painful to open my eyes, and my sensitivity to stimuli skyrockets.

These are all the things that I know will happen every time, but of course with dysautonomia, anything can really happen. I could have chest pain, and pass out, without having blurry vision. It is all about getting to know your body.

I usually set an alarm for when I have to take my meds, and always make sure to have extra with me.

Last year I forgot my meds when I was in class and they wore off when I was in the middle of a two hour class. By the time the class ended I could barely stand, because I had over-exerted myself in class. I was looking at a fifteen minute walk back to my dorm, so I called my boyfriend and told him what happened. He already knew about my POTS and that I usually never ask for any type of help, a flaw I have been working to correct.

He walked to the building I was in and walked with me back to my dorm. We took frequent brakes and he had his arm around my waist the whole time, just in case I fell. Now I always keep an extra dose in my backpack, and most of my friends have some extra doses with them.

You learn how to adapt, and prevent being in pain. I try very hard to prevent the feeling of the meds wearing off, but sometimes I let a half hour laps just to be like “Yup, I still have it. Dang.”

 

~Maddie

Headache Days 8/30/2016

On Monday I woke up with a pretty bad headache. It wasn’t the worst one I’ve had and it didn’t cause me to be unable to keep food down, so I wasn’t going to skip class.

I knew I would probably have a headache because on Sunday I stayed up until 11 PM and was off my meds for the last two hours. That was not a smart decision on my part, but I was having fun with my friends. We were just sitting around playing video games, so I didn’t feel bad at the time, but like everything else it takes a tole on my body.

On Monday’s I have class from 9 to 11 in the mornings and then work from 4 to 7 in the evenings. Once I woke up and realized that the headache wasn’t going away, I drank and much water as I could and took two salt pills. People with POTS will commonly up their salt intake to counteract the drop in their blood pressure when they change positions. I knew that doing this wouldn’t make the headache go away, but I was trying to keep it from getting worse.

After my classes I ate as much as I could and then took a nap until work. After work I came back and went straight to bed again.

I had planned on showering and going to the gym, but my head would pound every time I sat up, so I picked my battles and decided to bag the gym and shower.

I finally chose my health over what I wanted to get done! Progress!

After resting for the majority of yesterday, I woke up today without a headache. I still try and take the day after bad headache days pretty slow, but I have a long day today so I guess we will see if it comes back. For now all I can do is chug water.

I was able to go to all of my classes, and made it through work without any major disasters. For me, that is a productive day.

 

~Maddie