Living my life with POTS- a form of Dysautonomia.
For starters, I feel very lucky to be able to do what I can do despite having POTS. Not everyone is as lucky as I am, as some people are severely incapacitated by their symptoms. Thankfully, although standing still in one place is difficult for me (my heart races and my body feels stressed and unwell), I can move around and be reasonably active. I'm no longer fit and energetic the way I used to be, (no more running, climbing hills is hard but achievable since I got on the right meds, physical activity now has to be a balancing act of exertion followed by plentiful rest). I am able to walk a few miles regardless of my symptoms and dance all night long as long as I rest up the next day, and for that I am very grateful, as I love being out in the countryside and dancing fills my heart up with joy!
Living with POTS- the truth.
The truth is that 100% of the time, I am dealing with symptoms to some degree. I will never go into detail about exactly how I feel when people ask me, because it would sound like complaining, something which I hate to do! I am well practiced now at living with various symptoms and so I don't like to think about or focus on them, and I certainly don't let them stop me doing things- I have learnt how to balance pushing myself with rest and recuperation and most of the time I get it right, though at busy times I do have to be mindful not to overdo it.
Symptoms I experience are:
Low blood pressure- is the main symptom I have as a result of my dysautonomia, but thankfully since being on medication for it, I feel a remarkable amount of improvement! I no longer have so many bad days of feeling really exhausted and weak, and I am able to do more whilst recovering more quickly afterwards. I am very grateful that, after years of feeling dizzy every day and having numerous daily occurrences of pre-syncope feelings, I no longer feel those symptoms! Standing in a queue or waiting for a drink at a bar is still a wonderful novelty to me because I can't quite believe how normal I now feel when doing so! (updated since starting treatment for low blood pressure in 2017).
Needing to drink a lot, which is probably my body's way of telling me to keep hydrating- hydration helps blood volume, which tends to be low in people with dysautonomia.
Muscle aches and joint pains- I get these daily to different degrees. My back and neck tend to ache the most, but I also get pains in my knees, ankles and wrists. I have to have a professional deep body tissue back massage every 6-8 weeks because if I don't, I suffer pain and tension headaches and can't sleep from the soreness.
Headaches- I get headaches often and migraines a couple of times a month, it is something I've just learnt to live with and carry on the best I can despite them.
Feeling stressed- This is both easy and hard to convey. It's easy because pretty much everyone has been stressed. It's hard because most people have been stressed because of something, so there's been some mental component to it, some worries. With me, it's my body that is stressed, not my mind. So I can feel emotionally happy as Larry, yet my body feels stressed. It's a strange, unpleasant feeling and I often feel it when I'm trying to relax, like when trying to sleep or when sitting still to watch a film or read a book. My body feels somehow like it can't wind down. I get a feeling like there's not enough oxygen in me; I am breathing fine but it doesn't seem to be enough- my chest feels heavy and strange. This is a result of my sympathetic nervous system (the one responsible for the 'fight or flight' reactions) being on overdrive. Thankfully I've discovered that since my low blood pressure has been treated as well as my tachycardia, I rarely feel this way anymore- if I do, it's usually triggered by something I've done that I shouldn't, like eating too much (or too strong) dark chocolate!
Fatigue- it varies day by day but is always there to some degree. I'm lucky in that I can push through it and still be active, but sometimes I feel like my body just wants to sleep and sleep and sleep, which makes doing anything more difficult.
If I let myself get too tired or do too much at once I get a weak feeling in my body and then even simple things get very difficult, which is not a nice feeling at all. So, it's important that I find a balance between pushing beyond my limitations sometimes (as I am determined to overcome them to whatever degree I can) without pushing myself so hard that I set myself back and end up weak, shaky and exhausted. Over the years I have gotten really good at listening to the warning signs in my body and so I rarely get to that point of feeling weak, it generally only happens now if I pick up some other illness on top of POTs such as a virus.
Memory problems/brain fog- I can get confused, forgetful and find it hard to find the right words when I'm tired. I'll forget where I put things or walk into a room and forget what I went in there for. Apparently it's a result of lack of blood to the brain. It's very frustrating and can make me feel stupid as I sometimes do things that don't make sense and make me seem "dizzy" (for example after I'd given a holistic therapy treatment and my client payed me, I booked in her next appointment, then I held the money back out to her- I don't even know what made me do that!) when under normal cirumstances I am very bright and intelligent. It's even worse if I do something really stupid (like the time I was having a really bad day and bought a ticket for parking from the wrong booth because I couldn't understand the information written on the sign saying it was for blue badge permit holders only- it might as well have been written in Swahili for me that day as my brain just couldn't process the information) because it makes me feel like I'm losing my mind! But thankfully, it comes back again and I can look back and laugh about it.
Frustration- this is part and parcel of learning to live with what I have. I have to push through daily fatigue, put up with muscle aches and pains, balance activities depending on my energy levels and what other things are going on that week, so I can't take anything for granted. Not even the simple act of standing up that so many people don't even think twice about. The disorder forces me to be aware of my limitations, something it's hard to have to think about when you're 27 (at the time of writing this) years old. Even though I can do so much and I'm proud of what I can do, there will always be things I can't do that I wish I could. Despite that I am very determined in my thinking and choose to focus on being grateful for everything that I can do. "Mind over Matter" does have limitations- I can't force my body to do things when its weak, for example, and no matter how much I'd love to, I can't think dysautonomia away- but what I can do is use my mind to always keep striving for improvements, even if that's simply in my attitude and how I live with having POTS.
It's not ALL bad...
It's not all bad because, hard though it is and I'd never deny that, it has forced me not to take anything for granted. One day my body worked fine and then suddenly one day, it didn't. But I'm lucky. It could have been a lot worse. I've got both arms and legs, I can stand up and go for long walks, even though it does take a toll on my body- so I'm happy that I still have many abilities. In fact, it's made me focus on all the wonderful things I do have. Instead of focusing on being sad at the health I've lost, I focus on being happy for the health I still have, and on making the most of it. Plus, I do feel as if I am improving, now I know what to do to help myself and am getting the support from the right people. I've also made a lot of wonderful friends with POTS and joined support groups where we share ideas and feelings. POTS may never go away, but I'm learning how I can still live a full, active and happy life despite it.
It's also made me more compassionate and understanding of other's suffering. It's made me focus on 'the little things' and on being grateful for the beauty and simplicity in life.
Yes, POTS can be hard to live with. Yes, it makes me sad sometimes. But I'm determined that no matter what, I'm going to live my life to the full. To a healthy person that might mean being really active and going lots of places and always being on the go. To me, it means being happy with what I've got. Enjoying each and every moment. Making sure I find things to smile, laugh and be happy about in every day. I’m still me- still Laura who loves nature, walking and the countryside, and nothing wrong with my brain, my nervous system, my body, anything- can change that. It is who I am.
Living with POTS- the truth.
The truth is that 100% of the time, I am dealing with symptoms to some degree. I will never go into detail about exactly how I feel when people ask me, because it would sound like complaining, something which I hate to do! I am well practiced now at living with various symptoms and so I don't like to think about or focus on them, and I certainly don't let them stop me doing things- I have learnt how to balance pushing myself with rest and recuperation and most of the time I get it right, though at busy times I do have to be mindful not to overdo it.
Symptoms I experience are:
Low blood pressure- is the main symptom I have as a result of my dysautonomia, but thankfully since being on medication for it, I feel a remarkable amount of improvement! I no longer have so many bad days of feeling really exhausted and weak, and I am able to do more whilst recovering more quickly afterwards. I am very grateful that, after years of feeling dizzy every day and having numerous daily occurrences of pre-syncope feelings, I no longer feel those symptoms! Standing in a queue or waiting for a drink at a bar is still a wonderful novelty to me because I can't quite believe how normal I now feel when doing so! (updated since starting treatment for low blood pressure in 2017).
Needing to drink a lot, which is probably my body's way of telling me to keep hydrating- hydration helps blood volume, which tends to be low in people with dysautonomia.
Muscle aches and joint pains- I get these daily to different degrees. My back and neck tend to ache the most, but I also get pains in my knees, ankles and wrists. I have to have a professional deep body tissue back massage every 6-8 weeks because if I don't, I suffer pain and tension headaches and can't sleep from the soreness.
Headaches- I get headaches often and migraines a couple of times a month, it is something I've just learnt to live with and carry on the best I can despite them.
Feeling stressed- This is both easy and hard to convey. It's easy because pretty much everyone has been stressed. It's hard because most people have been stressed because of something, so there's been some mental component to it, some worries. With me, it's my body that is stressed, not my mind. So I can feel emotionally happy as Larry, yet my body feels stressed. It's a strange, unpleasant feeling and I often feel it when I'm trying to relax, like when trying to sleep or when sitting still to watch a film or read a book. My body feels somehow like it can't wind down. I get a feeling like there's not enough oxygen in me; I am breathing fine but it doesn't seem to be enough- my chest feels heavy and strange. This is a result of my sympathetic nervous system (the one responsible for the 'fight or flight' reactions) being on overdrive. Thankfully I've discovered that since my low blood pressure has been treated as well as my tachycardia, I rarely feel this way anymore- if I do, it's usually triggered by something I've done that I shouldn't, like eating too much (or too strong) dark chocolate!
Fatigue- it varies day by day but is always there to some degree. I'm lucky in that I can push through it and still be active, but sometimes I feel like my body just wants to sleep and sleep and sleep, which makes doing anything more difficult.
If I let myself get too tired or do too much at once I get a weak feeling in my body and then even simple things get very difficult, which is not a nice feeling at all. So, it's important that I find a balance between pushing beyond my limitations sometimes (as I am determined to overcome them to whatever degree I can) without pushing myself so hard that I set myself back and end up weak, shaky and exhausted. Over the years I have gotten really good at listening to the warning signs in my body and so I rarely get to that point of feeling weak, it generally only happens now if I pick up some other illness on top of POTs such as a virus.
Memory problems/brain fog- I can get confused, forgetful and find it hard to find the right words when I'm tired. I'll forget where I put things or walk into a room and forget what I went in there for. Apparently it's a result of lack of blood to the brain. It's very frustrating and can make me feel stupid as I sometimes do things that don't make sense and make me seem "dizzy" (for example after I'd given a holistic therapy treatment and my client payed me, I booked in her next appointment, then I held the money back out to her- I don't even know what made me do that!) when under normal cirumstances I am very bright and intelligent. It's even worse if I do something really stupid (like the time I was having a really bad day and bought a ticket for parking from the wrong booth because I couldn't understand the information written on the sign saying it was for blue badge permit holders only- it might as well have been written in Swahili for me that day as my brain just couldn't process the information) because it makes me feel like I'm losing my mind! But thankfully, it comes back again and I can look back and laugh about it.
Frustration- this is part and parcel of learning to live with what I have. I have to push through daily fatigue, put up with muscle aches and pains, balance activities depending on my energy levels and what other things are going on that week, so I can't take anything for granted. Not even the simple act of standing up that so many people don't even think twice about. The disorder forces me to be aware of my limitations, something it's hard to have to think about when you're 27 (at the time of writing this) years old. Even though I can do so much and I'm proud of what I can do, there will always be things I can't do that I wish I could. Despite that I am very determined in my thinking and choose to focus on being grateful for everything that I can do. "Mind over Matter" does have limitations- I can't force my body to do things when its weak, for example, and no matter how much I'd love to, I can't think dysautonomia away- but what I can do is use my mind to always keep striving for improvements, even if that's simply in my attitude and how I live with having POTS.
It's not ALL bad...
It's not all bad because, hard though it is and I'd never deny that, it has forced me not to take anything for granted. One day my body worked fine and then suddenly one day, it didn't. But I'm lucky. It could have been a lot worse. I've got both arms and legs, I can stand up and go for long walks, even though it does take a toll on my body- so I'm happy that I still have many abilities. In fact, it's made me focus on all the wonderful things I do have. Instead of focusing on being sad at the health I've lost, I focus on being happy for the health I still have, and on making the most of it. Plus, I do feel as if I am improving, now I know what to do to help myself and am getting the support from the right people. I've also made a lot of wonderful friends with POTS and joined support groups where we share ideas and feelings. POTS may never go away, but I'm learning how I can still live a full, active and happy life despite it.
It's also made me more compassionate and understanding of other's suffering. It's made me focus on 'the little things' and on being grateful for the beauty and simplicity in life.
Yes, POTS can be hard to live with. Yes, it makes me sad sometimes. But I'm determined that no matter what, I'm going to live my life to the full. To a healthy person that might mean being really active and going lots of places and always being on the go. To me, it means being happy with what I've got. Enjoying each and every moment. Making sure I find things to smile, laugh and be happy about in every day. I’m still me- still Laura who loves nature, walking and the countryside, and nothing wrong with my brain, my nervous system, my body, anything- can change that. It is who I am.