So many POTSies are stuck in bed most of the time, because it is so hard for them to sit up without having a massive "POTS attack" of messed up blood pressure, severe tachycardia and all of the vertigo, lightheadedness, fainting, etc. that goes with that.
So what's a POTS Grrl (or Guy) to do when stuck in bed? Well, being that I spent over 9 months in bed or laying down on the couch in my den, I know a thing or two about beating the bedrest blues.
First we need to acknowledge that the bedrest blues are not just plain old laziness or depression. If your body is so physically ill that you cannot get out of bed, it is not laziness. And if you can't get out of bed because you are physically ill, of course you are going to be depressed about it! This is not some abnormal mental pattern - the only person who wouldn't be depressed about being stuck in bed is someone who probably has no conscious awareness of the fact that he or she is stuck in bed - like someone who is 'brain dead.' So, please don't think you have lost your mind just because you are really, really sad about being stuck in bed. If you are having an emotion that %99.999 of all humans would experience in response to your current situation, you emotions are about as normal as can be. It's OK to be sad about this. BUT, no one wants to live their life being sad all the time, so you have to do something about the bedrest blues.
Some people turn to family, friends, counselors, psychologists, etc. I did all of the above, and while I am eternally grateful for everyone who was kind enough to listen to me during this difficult time in my life, I don't think that talking to people was really enough to cheer me up.
Some people take prescription drugs from their doctor to combat depression. I am not a fan of taking any drugs unless you REALLY need it. However, some studies have shown that SSRI drugs, commonly used to treat depression, have a stimulating effect on the nervous system that helps some patients with POTS even if they are not suffering from depression. I tried one of these drugs for about 4 days, hoping it would help my POTS, but instead it made my face and neck numb and gave me these creepy crawly bug sensations all over my skin. No thanks! I'm not saying these drugs don't help some people, but before you start taking meds, I would encourage you to try non-pharmaceutical means to lift your spirits.
Some people turn to religion. Some people speak with their priest, minister or rabbi. I do not attend church, but have always considered myself to be a spiritual person who believed in God. I have found praying to help me through the toughest days since I have been sick and sometimes I think it even helps me sort stuff out in my own head. I think when you ask God for something in a prayer, you really have to ask for important stuff, at least for me, so praying can really help you think about what is important to you. What really matters? Hopefully you're not going to waste a prayer asking for something silly and frivolous, when there are things in your life and the greater world that are probably more deserving of God's attention, like healing your body and keeping your family healthy and happy and finding a cure for POTS. Also, laying in bed bored is a really good time to read, and not many books are longer than the Bible. Whatever your religion, or even if you are not religious at all, think of bedrest as an opportunity to get in touch with your spiritual side or maybe just educate yourself on all of the world's great religions.
All of these things are well and good, but I found that the best way for ME to beat the bedrest blues was to keep myself as busy as my physical condition would allow me to be. I created a "CAN DO" list, where I literally listed everything I could probably do while stuck in bed, even if it was something I didn't want to do or couldn't do everyday. When I was feeling really down because I was bored or felt trapped in bed, I would look at my CAN DO list and just start doing things on it.
Here's a sample of my "CAN DO" list from last year:
-talk to POTS friends on Facebook
-research POTS journal articles on laptop
-make a POTS blog
-call a friend I've been meaning to talk to but was too busy for before POTS
-10 leg lifts each leg (even if I only did one at a time and took all day to complete it)
-arm exercises with Poland Spring water bottles
-stretch often
-massage my legs an give myself a nice pedicure
-give my hair a good old fashioned mayo and eggs conditioner treatment
-give myself a bunch of little braids like I'm on vacation in the Caribbean
-give myself an avocado/cucumber facial
-take a loooooong bath (not with hot water so you don't lower your BP too much)
-play cards by myself
-learn card tricks from Internet
-play cards with a friend
-play board games
-invent board games
-study a foreign language from books on tape and/or videos
-listen to books on tape
-listen to music like I used to back in high school, and try to learn all of the lyrics to my favorite songs
-watch TV (again, depending on the dizziness)
-rent free movies from the library
-play silly video games
-figure out how to play Wii Sports games laying or sitting down
-watch movies and TV shows on Hulu.com for free
-look at stupid videos on YouTube
-pick a random subject and learn everything you can about it (example: butterflies of the northeast US or ancient Greek architecture)
-meditate/deep breathing
-some yoga positions
-pray
-write a love letter to your significant other
-make homemade greeting and holiday cards
-write a handwritten letter to your grandma or old Aunt Myrtle
-write poetry
-write a book
-keep a symptom journal
-keep a fun journal that has nothing to do with POTS
-figure out the top 10 things you want to do in life before you die; your "bucket list" and don't leave things off the list just because of your POTS - what would you do if POTS didn't limit you?
-draw
-paint
-learn to knit a scarf
-do more arts & craftsy stuff
-lanyard
-beading
-clip coupons
-plan your menu for the week, to minimize the amount of time you have to spend in the kitchen and to eat as healthy as you can (hint: leftovers for lunch!)
-read the newspaper everyday (dizzy dependent)
-put your family's budget in a spreadsheet so you can track what you are spending money on and see where you can pinch some pennies
-organize all of the photos I have piled in shoe boxes
-make an awesome photo album with funny sayings and stuff
-scrap booking
-sell some stuff on e-bay or Craig's List
-organize medical records into binders and make a list of ALL tests you ever had in date order (put ABNORMAL test names in CAPS)
-research family history on Ancestry.com and the Internet (again, only when I'm not dizzy)
-start seeds indoors in a sunny window
-paint some cheap terracotta flower pots
-plan the perfect party in your head that you will throw when you are feeling better and have given POTS a kick in the ass
-cuddle extra good with the dog
OK, if you could get up and walk around like a normal person, you probably wouldn't have time to do most of the stuff on this list. But this list served three important purposes for me:
(1) It reminded me that my life was NOT over and that there were plenty of things I COULD do from bed, including things that I wouldn't have had time for if I had not been stuck in bed all day.
(2) It helped me not be so bored all the time, because when I was bored, I would just look at my Can Do list and pick something to do.
(3) As I started to get a little better, I began to add more physically challenging things to the list, which reminded me that I was making progress and getting better, even if it was much slower than I wanted to get better.
Just keep reminding yourself that your feeling like a wet noodle is only temporary. Most POTS patients WILL FEEL BETTER over time. It may take a few years, and t may be a very slow process with lots of ups and downs and setbacks, but just remember this is not permanent for most people. Your life will get better, and you can't let yourself get stuck in the bedrest blues mode. Your body needs time to heal, and the last thing you need is to get super depressed, which can slow down your healing. In fact, your body can actually suffer real physical symptoms if you get really depressed, so do yourself a favor and consider "happy time" to be part of your overall treatment to help you overcome your POTS symptoms. Do something that puts a smile on your face at least once a day, and even on those really awful days when you are in the ER passed out and not breathing and maybe your doctor doesn't know what to do - just take a second to think - someday I am going to look back on this ordeal and say, "wow, that sucked!" In the grand scheme of life, like 70-90 years, a few months or years in bed is not fun, but it is barely a blip on the screen when you look at the whole picture.
My motto though my POTS ordeal has been "slow progress is better than no progress." Don't get too bummed when you have had a good week, and then all of a sudden you have a bad one the next week. Just think, "well hey, I will have another good week, or maybe even 2 good weeks in a row next month."
Keep your chin up! Things will get easier and better for you!
So what's a POTS Grrl (or Guy) to do when stuck in bed? Well, being that I spent over 9 months in bed or laying down on the couch in my den, I know a thing or two about beating the bedrest blues.
First we need to acknowledge that the bedrest blues are not just plain old laziness or depression. If your body is so physically ill that you cannot get out of bed, it is not laziness. And if you can't get out of bed because you are physically ill, of course you are going to be depressed about it! This is not some abnormal mental pattern - the only person who wouldn't be depressed about being stuck in bed is someone who probably has no conscious awareness of the fact that he or she is stuck in bed - like someone who is 'brain dead.' So, please don't think you have lost your mind just because you are really, really sad about being stuck in bed. If you are having an emotion that %99.999 of all humans would experience in response to your current situation, you emotions are about as normal as can be. It's OK to be sad about this. BUT, no one wants to live their life being sad all the time, so you have to do something about the bedrest blues.
Some people turn to family, friends, counselors, psychologists, etc. I did all of the above, and while I am eternally grateful for everyone who was kind enough to listen to me during this difficult time in my life, I don't think that talking to people was really enough to cheer me up.
Some people take prescription drugs from their doctor to combat depression. I am not a fan of taking any drugs unless you REALLY need it. However, some studies have shown that SSRI drugs, commonly used to treat depression, have a stimulating effect on the nervous system that helps some patients with POTS even if they are not suffering from depression. I tried one of these drugs for about 4 days, hoping it would help my POTS, but instead it made my face and neck numb and gave me these creepy crawly bug sensations all over my skin. No thanks! I'm not saying these drugs don't help some people, but before you start taking meds, I would encourage you to try non-pharmaceutical means to lift your spirits.
Some people turn to religion. Some people speak with their priest, minister or rabbi. I do not attend church, but have always considered myself to be a spiritual person who believed in God. I have found praying to help me through the toughest days since I have been sick and sometimes I think it even helps me sort stuff out in my own head. I think when you ask God for something in a prayer, you really have to ask for important stuff, at least for me, so praying can really help you think about what is important to you. What really matters? Hopefully you're not going to waste a prayer asking for something silly and frivolous, when there are things in your life and the greater world that are probably more deserving of God's attention, like healing your body and keeping your family healthy and happy and finding a cure for POTS. Also, laying in bed bored is a really good time to read, and not many books are longer than the Bible. Whatever your religion, or even if you are not religious at all, think of bedrest as an opportunity to get in touch with your spiritual side or maybe just educate yourself on all of the world's great religions.
All of these things are well and good, but I found that the best way for ME to beat the bedrest blues was to keep myself as busy as my physical condition would allow me to be. I created a "CAN DO" list, where I literally listed everything I could probably do while stuck in bed, even if it was something I didn't want to do or couldn't do everyday. When I was feeling really down because I was bored or felt trapped in bed, I would look at my CAN DO list and just start doing things on it.
Here's a sample of my "CAN DO" list from last year:
-talk to POTS friends on Facebook
-research POTS journal articles on laptop
-make a POTS blog
-call a friend I've been meaning to talk to but was too busy for before POTS
-10 leg lifts each leg (even if I only did one at a time and took all day to complete it)
-arm exercises with Poland Spring water bottles
-stretch often
-massage my legs an give myself a nice pedicure
-give my hair a good old fashioned mayo and eggs conditioner treatment
-give myself a bunch of little braids like I'm on vacation in the Caribbean
-give myself an avocado/cucumber facial
-take a loooooong bath (not with hot water so you don't lower your BP too much)
-play cards by myself
-learn card tricks from Internet
-play cards with a friend
-play board games
-invent board games
-study a foreign language from books on tape and/or videos
-listen to books on tape
-listen to music like I used to back in high school, and try to learn all of the lyrics to my favorite songs
-watch TV (again, depending on the dizziness)
-rent free movies from the library
-play silly video games
-figure out how to play Wii Sports games laying or sitting down
-watch movies and TV shows on Hulu.com for free
-look at stupid videos on YouTube
-pick a random subject and learn everything you can about it (example: butterflies of the northeast US or ancient Greek architecture)
-meditate/deep breathing
-some yoga positions
-pray
-write a love letter to your significant other
-make homemade greeting and holiday cards
-write a handwritten letter to your grandma or old Aunt Myrtle
-write poetry
-write a book
-keep a symptom journal
-keep a fun journal that has nothing to do with POTS
-figure out the top 10 things you want to do in life before you die; your "bucket list" and don't leave things off the list just because of your POTS - what would you do if POTS didn't limit you?
-draw
-paint
-learn to knit a scarf
-do more arts & craftsy stuff
-lanyard
-beading
-clip coupons
-plan your menu for the week, to minimize the amount of time you have to spend in the kitchen and to eat as healthy as you can (hint: leftovers for lunch!)
-read the newspaper everyday (dizzy dependent)
-put your family's budget in a spreadsheet so you can track what you are spending money on and see where you can pinch some pennies
-organize all of the photos I have piled in shoe boxes
-make an awesome photo album with funny sayings and stuff
-scrap booking
-sell some stuff on e-bay or Craig's List
-organize medical records into binders and make a list of ALL tests you ever had in date order (put ABNORMAL test names in CAPS)
-research family history on Ancestry.com and the Internet (again, only when I'm not dizzy)
-start seeds indoors in a sunny window
-paint some cheap terracotta flower pots
-plan the perfect party in your head that you will throw when you are feeling better and have given POTS a kick in the ass
-cuddle extra good with the dog
OK, if you could get up and walk around like a normal person, you probably wouldn't have time to do most of the stuff on this list. But this list served three important purposes for me:
(1) It reminded me that my life was NOT over and that there were plenty of things I COULD do from bed, including things that I wouldn't have had time for if I had not been stuck in bed all day.
(2) It helped me not be so bored all the time, because when I was bored, I would just look at my Can Do list and pick something to do.
(3) As I started to get a little better, I began to add more physically challenging things to the list, which reminded me that I was making progress and getting better, even if it was much slower than I wanted to get better.
Just keep reminding yourself that your feeling like a wet noodle is only temporary. Most POTS patients WILL FEEL BETTER over time. It may take a few years, and t may be a very slow process with lots of ups and downs and setbacks, but just remember this is not permanent for most people. Your life will get better, and you can't let yourself get stuck in the bedrest blues mode. Your body needs time to heal, and the last thing you need is to get super depressed, which can slow down your healing. In fact, your body can actually suffer real physical symptoms if you get really depressed, so do yourself a favor and consider "happy time" to be part of your overall treatment to help you overcome your POTS symptoms. Do something that puts a smile on your face at least once a day, and even on those really awful days when you are in the ER passed out and not breathing and maybe your doctor doesn't know what to do - just take a second to think - someday I am going to look back on this ordeal and say, "wow, that sucked!" In the grand scheme of life, like 70-90 years, a few months or years in bed is not fun, but it is barely a blip on the screen when you look at the whole picture.
My motto though my POTS ordeal has been "slow progress is better than no progress." Don't get too bummed when you have had a good week, and then all of a sudden you have a bad one the next week. Just think, "well hey, I will have another good week, or maybe even 2 good weeks in a row next month."
Keep your chin up! Things will get easier and better for you!
Cute : ) I am just recovering from a broken clavicle..it was REALLY bad but I didn't let it get me depressed..I'm ALWAYS sa an I LOVE living la vida lacrimosa (Spanish) because if you're always sad, you're more likely to treasure the happy moments and rage is a lot less likely therefore patience comes with ease. Besides I think damsels in distress are more beautiful than happy princesses..even though I'm a guy..the same thing applies :P if you wanna be sad, be sad..but remember to just keep swimming and row row row your boat gently down cause life is but a dream. : )
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