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

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

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

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

Obsessing Over Pain

I am making plans to see a new doctor in a couple of months and because of this they have asked me to record my pain and symptoms daily. So now I live by the questions of where does it hurt, how much does it hurt, is that from this or this? It is frustrating because 96c7ded75615b8889b6dcdf5373415b4usually when I am in pain I try not to dwell on it. I push it to the back of my mind where I can ignore it.

But now I am forced to think about the pain and the discomfort. To realize that almost every day I am being put in some type of discomfort, and I hate to dwell on that. I want to think that I am normal and that I have maybe one bad day a week, when in reality I have maybe one good day.

I am grateful that I have the support system that I do and that I am able to see doctors that want to help me. I realize that it is important to track symptoms, but for my own mental well being, I find it detrimental. I hate looking back and seeing that this has been a four headache day week, when normally I would have a headache and when it goes away I would forget about it. Being able to trick myself into thinking I am healthier than I am is a luxury.

How have I found to get through it?

I write down all the information that I need and then put it away. It isn’t on my desktop, or any place that I look constantly. It it out of sight and that causes mebp to not think about it all the time. I am less likely to dwell on it. Now the most annoying part is having to roll up my sleeves to take my blood pressure every couple of hours.

Do what you have to do, then put it away so you can get on with your life.

 

~Maddie

Taking Medication 10/5/2016

I take two pills when I wake up, then two every four hours until I go to bed. Along with that I take up to ten salt pills a day, depending on what I am doing that day.

Taking all of these medications every day can get really boring, but it is only part of my treatment, so I try to make it as fun as possible.IMG_20161005_215204454.jpg

I got a small pill case that is decorative. It holds three doses, and has a clasp that keeps it closed. I use it when I have to take doses when I am out of the house. I have never been afraid, or cautious to take medication around people, the decorative case is more for me. It makes me want to take my medication with me, and most people focus more on the case rather than asking me about my medication. An added bonus is that sense I have been using the case more people assume that I have been taking medication for a while, and I personally think it catches people off guard when I just pull out pill bottles.

I try to make taking my medication as easy as possible. I found that I won’t take my meds because I either don’t want to get up, or interrupt what I am doing. To counteract this, I try and have my meds with me when all possible, or I have them easily accessible. That way it is not a large interruption when I have to take them.

I have to keep reminding myself that if I don’t take the meds I will feel sick, and that is never fun. There are some days when I feel like crap, and taking my medication does nothing to help. Those days are the hardest to get through. You can do everything perfectly, and still not feel better. I just have to trust that I will get through this, and keep a close eye on how I feel, knowing that if it gets too bad I need to go to the hospital.

As long as I can keep my head up and my pills down, it is a good day.

 

~Maddie

Medical Alert Swag

This is why I wear a medical alert bracelet or necklace. Some people think that because POTS will not kill you, you don’t have to worry about wearing a medical alert bracelet. As far as I understand it, because I am on medication for my POTS, if I were to be given something that could interact with those medications it would cause a bad side effects.

What my medical alert things say:96c7ded75615b8889b6dcdf5373415b4

Dysautonomia

POTS

Beta Blocker

Give IV Fluids

(My mothers phone number)

I put dysautonomia as well as POTS for two main reasons. One being that because POTS isn’t widely known, an EMT may not know what it means, but most are familiar with the term dysautonomia. However, the main reason is that “postural orthostatic tachycardia syndrome” wouldn’t fit on the jewelry that I wanted.

I decided to put beta blocker because, as I understand it, if I am found unconscious and EMT might give me something that could react with the beta blocker. I also feel safer with knowing that I don’t have to be conscious, or aware, in order to tell someone what medication that I am on.

I don’t know if putting “give IV fluids”, the EMT is more likely to give them, but it would be nice that if I fainted and was out of it, to wake up with an IV already in. No begging for fluids, and I was out of it for the needle prick!

I recommend putting someones phone number on your alert swag, that way if there are any questions that need to be answered they have a number to call. I do not live in the same state as my mother, but she knows the most about my POTS, and would be able to answer any questions that the medical staff, or just people in general, would have. I know I feel a lot safer knowing that if something bad were to happen my mother is always there to help me out (she also presented the diagnosis of POTS to the doctors to confirm. She’s pretty awesome).

I have a necklace and a bracelet that both have my medical alert information on them. I like having two options, because if I want to wear a necklace then I wear the bracelet, but mostly I wear the necklace for convenience.

When I told my boss that I had POTS I also told them that I always wear my medical alert information, and if I ever pass out and don’t come too, to call the number. I would rather have my mother assess the situation and tell them if I need to go to the hospital or not. Usually I come to right after I pass out, but sometimes it takes me a little while before I can hold a conversation, and again, it is nice having this safety net. Saying this, I feel, also put my boss at ease. It took most of the pressure off them.

I have never been in a situation that has warranted the use of the medical alert jewelry, but you can never be too prepared.

Information about POTS

Importance of wearing a medical ID

 

~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