In this post I am sharing 5 reasons why PoTS doesn’t drive me potty! Join me as I share my journey of having PoTS Syndrome.
I can remember from a young age that I was always very aware that I could feel my heart beating strongly, which I now know to be palpitations. I just brushed it aside as being normal, as I thought that must be what everyone can feel too. But I also struggled with dizziness a lot as a child. I would frequently have to be excused from things at primary school because I just felt so dizzy. I even began to struggle walking into town. I started to lose quite a lot of confidence because I was always afraid of going dizzy. My mum had to slowly help me by encouraging me to go for regular walks with her. This carried on well into secondary school, but I suppose I started to get used to having these dizzy episodes. I remember having to lie down very often and wait for it to pass.
It was when I was 19, after going in for an operation on my bladder, that it was found that something wasn’t quite right with my heart. Whilst I was under anesthetic, the anesthetist found that there was something wrong. After bringing my mum in after I had woken up and was in the recovery room, he presented his findings to us. After that, things moved quite quickly and I was booked in to see a cardiologist at Papworth Hospital. After talking with my consultant, I was told that I had Wolff Parkinson White Syndrome (WPW).
“If you have WPW syndrome, there’s an extra electrical pathway (called an accessory pathway) in the heart, which is caused by additional tissue in the area of your heart which the electrical signals travel through. This causes signals to bypass the usual route. This acts a bit like a short circuit, triggering an episode of supraventricular tachycardia, or SVT.
An accessory pathway is present from birth and WPW syndrome is most common in babies born with other types of heart defects (congenital heart disease). However, it’s also seen in people who have structurally normal hearts. WPW syndrome can be inherited, although this is extremely rare.” British Heart Foundation.
Straight away, I was booked in to have an operation to remove the extra pathway in my heart. Unfortunately, it was unsuccessful which meant I was booked in for a second op a few months after. Thankfully, this was successful and the extra pathway and the Wolff Parkinson White was gone.
Unfortunately, I continued to still have palpitations, dizziness and other symptoms, which resulted in a diagnosis of PoTS Syndrome.
“In PoTS, the autonomic nervous system does not work properly. There’s a drop in blood supply to the heart and brain when you become upright and the heart races to compensate for this.” NHS.
I had absolutely no idea what PoTS Syndrome was and I had never heard of it before, but, it definitely explained all of my symptoms. Over the years, I tried different medications until I came to a combination that suited me. I am still taking these now, but slowly starting to reduce them. Over the years, I’ve also had to adapt and change the way I do certain things. Little lifestyle changes have helped, and I’ve learnt to be more mindful of when symptoms are coming on and what may trigger them too. It’s definitely been a journey over the years, but one that has helped me to grow and learn along the way and to not let it stop me from doing what I love. In the past, you could definitely say that PoTS drove me potty! But, as I’ve learned so much about it over the years and adapted, it’s really helped me to fully understand it and to not let it take control, even if it means sometimes I may have to lie down for a while. Like with any chronic illness, I’ve learned to listen to my body.
“The autonomic nervous system is in charge of all bodily functions that we don’t have to think about, such as: Heart rate and blood pressure, regulation, digestion, bladder control, sweating, stress response.” PoTS UK.
I’ve become aware and alert of what may trigger PoTS symptoms.
Pretty early on I started to become more aware of listening to my body when it came to my health. I remember shortly after my heart op, I had a gig and we were only doing a few songs, but unfortunately I had to end the set early due to symptoms. But that moment helped me to start being more aware of how my body felt and looking closely at the things that were triggering those symptoms. It just meant that I had to adapt with how I do certain things, and I would prepare myself before certain tasks and activities and during them.
I became very aware that either pushing myself too hard whilst doing things or exerting myself too much could cause a flare up, and would often result in either palpitations or dizziness. Also lack of rest I’ve found can definitely trigger systems for myself personally. Quite a few years back I also stopped drinking alcohol, as for me that’s a big no no, and I also avoid drinking caffeine.
As each person’s body is different, what may affect some people and cause a flare up, may be different for someone else. This is also definitely something that having Crohn’s Disease has taught me.
Adapting to how I do things
Through having a chronic illness, I’ve had to slightly alter how I do things. I don’t let PoTS stop me from doing the things I love, but I’ve learned to adapt. For example, when doing jobs around the house, I’ve found that sometimes I may have to rest in between jobs, to avoid having symptoms. When doing more strenuous activities, I’ve learned to slow down more, to be aware of how much I’m able to do, and to take my time if I need to. I’ve found that gentle exercise is much better for my body. I love going for walks, and for me personally I’ve found this to be the best exercise. I’m able to go at a pace that I feel comfortable with and if I need to stop and rest I’m able to.
I’ve also found it to be extremely helpful to explain to other people, whether it’s friends, family or co-workers, to let them know that I may just have to do things a little differently, and that I may need that little bit extra help if needed, or if I need to rest a while or take my time more. In the past I found it quite daunting telling other people about my health, but in fact I’ve found that people are very interested, and want to know ways in which they can help and how they can understand more.
Slowing down and resting is essential
“The autonomic (involuntary) nervous system being in overdrive may mean your body is working harder. Think of it as being similar to having a sticky accelerator pedal in a car.” PoTS UK.
Between having PoTS and Crohn’s, I can easily become very tired and can experience extreme fatigue. As soon as my eyes start to become tired and heavy, sometimes there’s no stopping me falling asleep. This is why I like to take time to rest when that feeling comes on. For me personally, I’ve found that taking some time to slow down and rest is essential. Sometimes it may mean that I have to sit or lie down for a while, maybe even take a short or long nap. But by doing that, I know that my mind and body will thank me later! Fatigue can have a strong impact on the body. It can affect the body physically, it can affect you mentally, emotionally and it can also affect our behaviour, the way we act.
Knowing that PoTS Syndrome doesn’t have to be in control
One of the key points in my post, 5 Things Crohn’s Disease has Taught Me, was “Crohn’s Disease can be in the car with you, but it doesn’t have to be the driver; you can still enjoy the things you want to do in life, even if you have to adapt a bit.” and for me it’s exactly the same with having PoTS. It was something that I learned gradually, but as I became more aware of what triggers symptoms, and looking at the things that can help and help prevent those symptoms, along with looking at how I can adapt to how I do things, I found that my PoTs doesn’t have to be in control.
If I do experience dizziness, I just simply use that time to rest, and to do other things until it passes, like reading, writing, and other things that I can do whilst resting.
Looking at the different ways in which I manage my PoTS
Managing my PoTs was definitely not an overnight thing. It did take a while, and even now I’m still learning. But I’ve found that focusing on what I can do, getting support if needed and gentle exercise has all helped a lot. For me it’s meant being on medication to help, but I’ve also learned to look at lifestyle changes, such as starting each morning by getting up slowly out of bed when I’ve been lying down, having a glass of water, gentle exercise, getting enough fluid and looking at diet changes, researching more about PoTS and being more aware of listening to my body. All of these can make a huge difference.
For me also, as a Christian, my strength comes from God. My faith helps me so much, and through prayer, it brings peace and comfort into my life, in all things, and with having a chronic illness.
Key points from this post
Having a chronic illness has enabled me to slow down, take time to rest, to enjoy the slow, simple moments in life and to take time to enjoy the things that I do.
- Small lifestyle changes help
- PoTs doesn’t have to control your life
- Learn to listen to your body and which things trigger your symptoms
- Each person is different and PoTs symptoms can vary a lot between individuals
- Make others aware of how you’re feeling and how it affects you so that they can help you
- Accept that there are times when you just need to rest, and that’s OK
- It will take time to find out how to best manage your individual symptoms