Sleeping with POTS

It has been six years sense I have been diagnosed with POTS, and I think I have done a pretty good job at managing all of the crazy changes it makes to my life.

One aspect that is not talked about a lot when it comes to POTS is how difficult it can make sleeping. To help shed some light on that, I thought I would try to give some insight into what it is like for me to sleep with POTS. I can only speak to my experiences, and they may not be the same for everyone. If you experience any of the same things, or any different struggles, I’d love to hear about it!

Before I even think about going to sleep I have to take my night medication. I take birth control, to help with my severe period pain, and a preventative migraine medication, both of which have to be taken before I can fall asleep. Once that is out of the way I am ready to go to bed.

I make sure that there is water and something to eat beside my bed, along with a plastic bag. The water is for when I wake up thirsty which happens about twice a night. The food is for when my stomach pain wakes me up. I have found that eating something can sometimes help. The bag is for when I wake up sick and can’t make it to the bathroom.

You may have noticed that all of these things wake me up, and that is a major part of my sleep with POTS. No matter what I do before bed to try and prevent it, I am always woken up at least three times during the night because my body needs something. If it is just water or a bite to eat, then I can usually go back to sleep fairly quickly. But if it is something more demanding, like stomach pain, it can take me up to an hour before I fall back to sleep. This is because either I get sick, or have to apply pressure to my abdomen for an extended period of time.

Another aspect of sleep when you have POTS is that once I am in bed for the night, I can not walk or really move anywhere unless I take my morning medication, which prevents me from lying down. Part of my treatment for POTS is taking a beta blocker and a vasovagal constrictor when I wake up, and every 5 hours after that. These medications help me to stand, and move about with less risk of falling and blood pressure drops. When the vasovagal constrictor is in my system it can be dangerous for me to lie down, so I do my best to avoid doing so. This means I am not on those medications when I sleep, so if I have to get up and do anything I am crawling, or scooting along the floor. I used to try and walk, but got tired of passing out every time. I give up this little piece of my dignity for safety.

As I previously mentioned, I take a beta blocker during the day, but not at night. The beta blocker helps to control my heart rate. A symptom of my POTS is random heart rate spikes. This means when I am lying in bed, literally doing nothing, my heart rate can go as high as 130 beats per minute. This can make it hard to breath, and comes with an intense feeling of anxiety. To cope I try and take deep breaths and avoid placing my arms over my heart. For me, being able to feel my racing heart makes the whole episode worse. As you can imagine, it is quite hard to sleep when your heart thinks you are running.

Blood pooling is another issue that I have to deal with when sleeping. For me is is generally from my knee down on either leg, and sometimes both at a time. It feels as though that part of my legs is full of fluid, almost to bursting. They feel tight and stiff. The pain ranges from mild, where I can elevate my feet and am able to sleep. To severe, where I am massaging my legs, putting ice on them, elevating my feet, and there is still no relief from the pain. It is on those bad pain nights where I question if I will be able to handle this condition for the rest of my life, but thankfully they have become fewer and farther between.

The other side to blood pooling is when I put my arms above my heart for more than five minutes, say if I were to fall asleep like that, they go numb because all the blood drains away from them. I have woken up completely unable to feel my arm and hand from my elbow down. Usually my body will wake me up when this happens. At first this is terrifying, and I have a mild freak out, but after so many years I’m used to it and just massage the blood and feeling back into it.

Another part of my POTS is migraines. When trying to sleep with one I found that if I am cold and put ice on my head I can sleep easier. Generally I will wake up during the night to be sick, and have to chug water, but I have been lucky and my migraines only last 24 hours. So, knowing that the pain will eventually be over is enough to help me get through those rough migraine nights.

As you can see, sleeping with POTS can be it’s own challenge, but the longer you live with it the more you will learn works for you.

If you were recently diagnosed, some advice I have for you is to not be afraid to try different things. It took me a while to figure out that eating something helped with my stomach pain.

 

~Maddie

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Learning to Drive at 21

I am working towards getting my drivers license for the first time at 21. There were a lot of factors that lead to me waiting this long.

When I was 16 and all of my friends were getting my their licenses, I was getting diagnosed with a chronic illness called POTS. I had been dealing with symptoms for years prior, and at the time, I was feeling sick even when I was sitting. My cardiologist suggested that it would not be safe for me to drive until we got my health under control. That took about a year.

Another obstacle is that I used to have a huge fear of driving. Even if I was a passenger in the car, I would be anxious and nervous for the whole ride. It was something that I’ve had to work through, and slowly over time I have become more comfortable in the car. When it came to driving, my dad taught me the basics when I was 16, but at the time I would be so anxious when driving that I could barely drive for more then ten minutes. I would avoid chances to drive, and put it on the back burner.

There really was no need for me to drive when I was in high school. My dad was retired, and my grandmother lives very close to us. Everyone was willing to give me and my brother rides to where we needed to go. I was having trouble in school, and my parents really wanted me to focus on school and my health. I am forever grateful for their support and help throughout it all.

After high school I went to college half way across the country. I loved school, and every thing was great, except I wasn’t home long enough to work towards driving, and I had no way to work towards it in college. Years went by, and at 20 I got my permit in the state I went to school at. A year later I renewed my permit and began working towards driving.

Now, I am home and am driving as much as I can. When I go back to school soon, my boyfriend and his family are going to help me get my license. Every time I think about it I get emotional. This represents me being more independent, and being able to help those I love.

It may have taken me longer than most, but I am getting there. This is something I can do now. If you are in a similar position, know that you aren’t alone. You’ll get there one day.

 

Maddie

I’m Not Crazy…I’m Not Crazy…

One of the hardest things I find about having an invisible illness is the fact that even I can’t see it. Yes, I can feel what happens to my body, and I can see how it impacts my life, but on those bad days, when I get down on myself, it would be nice to be able to look in the mirror and be like “Look, Maddie. There it is. You aren’t crazy.”

I tend to get stuck in my head easily, and I convince myself that I am making this all up, even though I was diagnosed over four years ago. It is hard to be able to admit to myself that I am sick when the mirror is telling me I’m not.

Every time I go to a doctors appointment I have the fear that they will tell me I’m not sick, or that the symptom I am experiencing is all in my head. When it is validated it is nice, and I almost want to ask for a sticker saying “Sick. Not crazy”. I would wear it every day.

I don’t want people to feel pity for me, but some understanding would be nice. I don’t mind explaining to strangers why I have to sit down in weird places, or why I am out of breath, but not having to do so would also be really nice.

That’s one of the main reason’s I started this blog and its corresponding Instagram page. I have been through those days when even I don’t seem myself. I put my experiences down on paper, so others with similar experiences can relate, or those that want to know what it feels like can get a glimpse.

For those of us that live our lives invisible, I see you.

 

~Maddie

When It’s Terminal

Around Christmas my dad was diagnosed with cancer in his brain. During the course of the next two months we learned that chemo wasn’t going to be much help and our focus turned to making the time he had left be as comfortable as possible.

The second day of finals week I had the conversation that I had been dreading. I called my mom to ask if I should come home early for my birthday, I live far away and traveling home requires a plane, I wanted to be there for my family and maybe see my dad one last time. She told me that my dad had passed away earlier that day.

I knew it was going to happen, and I had said my goodbyes when my parents came to visit just weeks before, but that still doesn’t mean I was prepared for what happens. No one is prepared for losing someone you love.

Nothing can prepare you for those moments when you would give anything to hear them laugh one more time, or when you need to tell them something that happened and you have to decide who you tell now. No one prepares you for the moments that you are crying over ice cream because it was their favorite flavor, and you can’t share it with them. No one tells you that birthdays hurt because they knew you at one age, and now you will no longer be that age again. A permanent reminder that the world keeps moving even when they are no longer there.

My mom was amazing. She moved forward, keeping him alive every way she knew how. I always knew my mom was strong, but she keeps proving it to me every day. My brother wrote and delivered the eulogy. He has always had a way with words, and I couldn’t be prouder of the image that he painted of our dad that day.

My dad and I shared a love for tattoos, and before I traveled back to school I had to get one for him. I got the words “Just remember what I taught you and you’ll be fine” over my left ribs. My dad was an amazing teacher, both in and out of the classroom, and this tattoo is a permanent reminder of the lessons he taught me.

The first books I read after he died was the “Monsters of Verity” series. What I took away from these books is something I will keep with me for the rest of my life. They show you that life is full of pain, most of it unavoidable, but to make life worth the pain.

My dad knew the pain life had, but he lived every moment to make his life worth it. Now I do the same.

Make it worth the pain.

 

~Mads

Swallowing Pills

The first time I ever had to swallow a pill was when I was in the hospital at the age of 15. Before that it was all chew-able medication or liquid. I was lucky enough to have great nurses and small pills to start with.

Now, on an average day I take 15 pills during the course of the day. These are some tricks and tips that I have found to help making the process easier.

When you are first starting out, swallow one pill at a time. I know it is tempting to just down all of them at once, but there have been so many times when one has slipped down before the rest, causing me to choke and spit them all out again. Not fun. So, take your time, and as you become more comfortable with the whole process it will become easier to swallow more pills at the same time.

Avoid using cold water. I have found that room temperature works best. Cold water causes your throat to constrict, leaving less room for the pills to go down. It can be done with cold water, but warmer water makes a lot easier. It can also be helpful if you take a drink of water before you swallow the pills. This way your mouth and throat are already wet and the pills have an easier time going down.

For pills that are not coated, make sure you have something to drink ready before you put the pill in your mouth. So many times I have put a non-coated pill in my mouth only to find that my water bottle is empty. Then you are stuck with the pill dissolving on your tongue as you get more water, and most of those types of pills taste horrible. Having your drink ready before you put the pill in your mouth avoids that problem.

The largest pill I have to swallow is the SaltStick Caps, which I recommend for anyone with POTS, or anyone who is trying to increase their salt intake. Due to my POTS I take up to five or six a day. It is a capsule type pill, so I can’t break it in half. After taking this pill for over a year, I have become able to swallow them with just about any liquid. But, By far the easiest way I have found is using a squeezable water bottle. Because your hands are doing the work of putting the water in your mouth, you only have to focus on swallowing. The bottle that has worked best for me is a Camelbak. This bottle allows me to create enough pressure to push the pills to the back of my throat, making swallowing easier. This helps with both big and smaller pills.

Lastly, don’t be ashamed or embarrassed about taking pills. If I don’t take my medication, then I don’t function. I have had to take a dose while at work, and I gagged on the pill, and ended up spilling water all down the front of my shirt. At the time I was mortified, and didn’t want to try again, but I took a moment to pull myself together and the pill went down much better the second time.

Taking medication has become a part of my life, and even though I have been doing it for so long, I still have moments when it doesn’t go smoothly. Those moments are bound to happen, but they will happen less frequently the longer you have to do it.

If you are just learning to take medication, it does get easier. Almost everyone gags when they are first learning, but just like any skill, it will get easier with practice.

 

~Maddie

Reality

For anyone, reality can hit you at the worst times. For someone who is chronically ill, I feel reality hitting me more often than I feel it hits a “normal” person.

I have been dealing with POTS for five years now, but I still struggle every so often with the fact that I have a chronic condition and that most likely I am not going to get better. However, I am determined to not let this slow me down.

I realize that hiking the entire AT is a lofty goal for anyone, and especially someone which a chronic illness. Knowing that I may not be physically able to complete it not a good enough reason for me not to try.

It has always been a dream of mine to complete a thru-hike, and the appalachian trail has a special place in my heart. In a perfect world I would be able to complete the three major trails during my lifetime: the AT, the PCT, and the CDT. But, I am aware that I may not ever be able to complete one thru-hike, but that doesn’t mean that I am not going to try.

Having this goal gives me something to strive for. I wake up every day knowing that if I work out today, it I take the stairs, if I eat all of my meals, then I am bringing myself one step closer to being able to go out on the trail. On my bad days I think about when I am on the trail and have bad days, at least I will be in beautiful country. Any sick day in the woods is better than a sick day in bed, in my opinion.

Reality may keep knocking you down, but it doesn’t matter how many times you fall. What matters is how many times you get back up.

 

~Maddie

Goals With Chronic Illness

I have found that when thinking about my health and getting healthier, I have to have something to work towards. So, earlier this year I set the goal for myself of completing a thru hike of the Application Trail.

With a chronic illness called POTS, it can be hard to even get up and walk to the bathroom, how can I even dream of doing something like this trail?

Lets take a look at the monster I dream of tackling.

The trail is a total of 2,200 miles and stretches from Georgia to Maine. It takes, on average, six months to complete. During the thru hike, I will encounter mountains, river crossings, and inclement weather among other challenges. I will be attempting a North Bound or NoBo, going from Georgia to Maine.

Why would I want to try something so challenging?

Many people have asked me that question, and it is a logical one. The answer has many parts. First off, I have never been one to take it easy. I have always set hard goals for myself, knowing full well that I might never accomplish them. This is just another star on the horizon that I am shooting for. The other half of the reason is that earlier this year my dad passed away. He was always interested in doing a thru hike, and together he and I completed part of the Long Train in Vermont. This would be a hike that I would have loved to do with him, but because he is no longer able to have that opportunity, I feel as though I need to do this in his memory. I need to at least try.

Knowing that each day when I wake up on the trail that it is up to me and me alone to get from this place to the next is exciting to me. As of now I am working every day to make sure I am healthy enough to complete the trail whenever I want to.

This is the first health goal that I have set for myself that actually excites me. I am excited to get up and work out every day. I am excited to gain the necessary weight. I am excited to get stronger.

The reality is that I may never get there, but it won’t be for lack of trying.

 

~Mads

Service Dog?

The other day I was at lunch with my mom and we were talking about this vlogger that I follow. She has POTS as well, and she has a service dog to help her with her disabilities. My mom asked me if I would ever get a service dog. I would be lying if I said I had never thought about getting one. In a way it validates my disability, because it is something that people can see that will tell them that I have a disability. I don’t want people to pity me, just to understand without me having to explain.

I told her that I would be open to the idea and if I felt my disability got to the point where I could no longer function around the house then I would probably look into getting one. I also mentioned that I would be more likely to get a service dog before I got a wheelchair. For me, I could not handle the blow to my self esteem that a wheelchair would bring.

I went from being a very active person, to not being able to run up a flight of stairs. For me, personally, I will do anything to keep out of a wheelchair. To me, that is giving up.

I know that they help a lot of people and I am glad that they are an option for some people, but for me they aren’t.

I believe that everyone is entitled to the tools that they choose to help them cope with their disability. Could a service dog help me now? Probably, but I don’t think I am at the point where I need that much help. Maybe I am in denial with how badly I am restricted, but that is my own perception. Hoping for the day I grow out of this, but I am willing to assess my situation and use to tools I think will better my life.

 

~Maddie

The Brain Tumor

When you find out that a loved one has a brain tumor, your world stops for a second. Everything shuts down and all you can think about are the times when you didn’t tell them you loved them, or you let go of a hug too soon.

For me, the brain tumor was in my dad’s head and I found out over winter break. I had been home for almost three weeks before he went into the hospital and we found out about the tumor. For me, the hardest part was that for those three weeks my dad and I argued a lot. It was clear to me that he was not functioning at a normal level, and I thought that he was doing it to himself. Now, looking back, I can see that that was all due to the brain tumor. It hurts knowing that the last memories he has of be before the surgery is us arguing.

He made it through the surgery, and they think they got it all out, but is was cancerous, so after rehab he will be undergoing treatment for the cancer.

I only saw him once after his surgery, and he was really out of it and doesn’t remember much of that visit. His memory is still a waiting game to see if he will have any short term memory.

His outlook is beyond positive though. He doesn’t want this to upset the family, and he can laugh about the things that are troubling him. Like how it can take him a half hour to get dressed in the morning.

Another hard part of this has been being able to still focus on my health. I have an appointment with a new doctor coming up and I was tempted to cancel it, because why should my health take precedent when Dad has brain cancer?

I credit not giving up, or slacking on my own health, to my mom. With her, everything was normal, with just the added news that it would take some time for Dad to recover and we would be there for him. Without her steady presence, I don’t know how any of us would have gotten through this.

Another steady presence has been my boyfriend, who has held me through the bouts of crying and not knowing is he would be okay.

Cry when you need to, realize that some parts of recovery will be overwhelming, but you still matter. Your thoughts and feelings still matter.

 

~Maddie

Body Image from a Sick Kid

I have postural orthostatic tachycardia syndrome (POTS). A part of that for me is that I have trouble gaining weight and maintaining a healthy weight.

I have never hated my body for how it looks, even before I got sick. I grew up playing sports, and to me my body was just something that I used. It was a tool that I could use to accomplish a goal. Through being sick, my view on my body has changed. Now I see it as something that I have to put work into to see a reward.

I take my medication so that I can get out of bed and become a functional human. Without that added step, I would not be able to get out of bed.

I drink a lot of water to keep my blood pressure from dropping, and causing me to pass out.

I wear compression socks so that I can stand for longer than twenty minutes.

These are only some of the things that I do every day to take my body from what it is, to functional. The rough days are when I do everything that I am supposed to do, and I still can’t function. But that is a topic for another day.

When I look in the mirror now, I see someone who has fought through so much to be standing today. I see someone who is still fighting and trying to make the most out of every day. I see a body that is failing me, but is trying. I see a body that needs help, that needs work, that is unpredictable. But, no matter how I am feeling, I got up, I stood up and am able to stand in front of that mirror. For me, that is a big deal, and I thank my body for the good days. The days when I don’t have to think about my blood pressure, or heart rate. When I don’t have to focus on how much water I drank, or the last time I took my medication. The days when I feel normal.

I have always grown up with doctors telling me that I am too skinny. That I need to gain weight. Looking back on it, this could have been really destructive to a young girl, bring told by a professional that you are not right. I give credit to my parents, for always telling me that I am beautiful and backing me up when I say that I eat a lot, which I do.

Now, however, my weight is a larger concern, because if I get sick (on-top of the normal sick) my body needs the extra weight to be able to fight as best it can. So, not I do everything I can to gain weight. I do my best to give my body the resources it needs, knowing full well that the next time I am weighed by the doctors they are going to tell me that I am still too skinny.

Looking in the mirror I know that I am skinny. I can clearly see it, but that’s not what I focus on. I focus on the fact that I ate all I could today, that I didn’t pass out, that I took the nap I needed.

When I look in the mirror I see everything that I have gone through in order to be standing today. This is the body that I was given, and I am determined to make the most of it.

 

~Maddie