PoTS: Raising awareness, not sympathy

Feeling under the weather is bad enough, however, when even your doctor doesn’t know what’s wrong with you, it can be quite frustrating. Postural Tachycardia Syndrome, also known as PoTS, can be a life altering and debilitating chronic health condition, and many doctors are still yet to be aware of it.

I was diagnosed with PoTS in early 2017, but had been displaying the symptoms of the condition since 2015. My aim is to educate others, so that they don't have to wait as long for answers as I did. Now, I must point out, I am in no way, shape or form hinting that the doctors I worked with were not helpful. They were, in fact, quite the opposite. The doctors who helped me to reach my diagnosis were brilliant, and didn't stop trying until we had found answers as to why I was feeling so poorly. My goal is to simply raise awareness of the condition so that it can be recognised and treated quicker, and encourage those with PoTS that it can be controlled.

For me, PoTS was an after affect of suffering from glandular fever. It began with feeling dizzy every time I stood up, to not being able to see and falling over. PoTS causes your body to be unable to adjust to gravity, which is pretty inconvenient considering gravity is inescapable... unless of course you go to space. An increase in heart rate from the lying to upright position of greater than 30 beats a minute is associated with PoTS, as well as a heart rate greater than 120 beats per minute within 10 minutes of standing. Symptoms of the condition include dizziness, palpitations, headaches, fatigue, brain fog, shakiness, shortness of breath, chest pain, gut problems, poor sleep, visual problems, sweating, bladder problems, nausea and more. The condition can be worsened by triggers such as excess heat, eating, standing up quickly, time of day, alcohol and exercise. Not the best thing to hear when all your friends are out partying and you can barely stay awake until 12!

Many suffering with PoTS feel helpless, and as if their lives revolve around their condition. However, there are many ways to help control it. I have a specialist at Derriford Hospital in Plymouth, and alongside him I have been able to learn to control my condition. The first step is medication. I am currently on 10 tablets a day for my condition, however, some people can feel better off as little as 1. Working out a medication routine with your doctor that is right for you will help tremendously. For those taking lots of medication, it may be worth investing in a prescription certificate. This will save you hundreds of pounds a year on prescriptions if you are buying more than 4 sets of tablets a month.

Another tip to help manage symptoms is to avoid stairs. It may sound silly, but for someone suffering with PoTS, stairs are a challenge! Lifts or escalators should be used if available, but if there are no other options then just take them really slowly.

Lots of rest is recommended, however, too much time in bed can worsen the condition. Try planning your day with things that you need to do, whilst balancing in enough rest time. Being realistic with goals and how quickly you will be able to achieve things is also a good tip, as putting too much stress on yourself to complete to deadlines can make you feel worse. PoTS sufferers tend to be sensitive to stressors, so avoid stress at all costs. Let your Boss or lecturers know about your condition, they should be accommodating.

A big piece of advice, though, is to try and not compare your life to others. An achievement for someone living with PoTS may not be a big deal to other people, but that's okay! Create your own mini goals and feel great when you achieve them. You went shopping for an hour without needing to sit down? That's amazing! You were able to go to a party until 1am? Fab! You couldn't get out of bed this morning, but you can this afternoon? Wonderful! Your accomplishments are a sign of you getting more control of your condition, and therefore, winning.

Having a good support system around you is really important, and I am very lucky to have such understanding people in my life. My boyfriend is especially good with my condition, understanding that sometimes I need to leave a meal early because I'm too "PoTSY", or that our plans for the day need to be cancelled because I physically can't get up. My family and him have been great at helping me adjust to my lifestyle, and being there for me when I need them. Whether it be to take me to doctor's appointment, pick me up from nights out at 1am because I'm too tired to stay until the group taxi at 3am, understanding my need to cancel plans on bad days or just to give me a good cuddle, they've been wonderful.

When I took part in Britain's Next Top Model, I was worried that my condition would hinder the experience, or that I wouldn't be able to complete it at all. However, due to all the help I have had from my doctors, producers, family, boyfriend and friends, I managed to enjoy the experience and stay healthy. Informing those around you is a great way of gaining the help and support you need. For me, that meant being allowed to carry around a big pot of salt with my name on it for the duration of my stay on the show, and being allowed to sit down when I needed to. Of course, some days were better than others, and when I returned home I was so exhausted, but it was worth it! It may be harder sometimes with PoTS, but life is definitely still doable with the condition and you can 100% still chase your dreams.

If you feel as though you may be displaying symptoms of PoTS, please make an appointment with your GP. Self-diagnosis isn't a great idea, however, explaining that you think you might have this condition is a good way of bringing PoTS to your doctors attention. From there, you can be tested and treated to help alleviate your symptoms, and live a happier and healthier life.

For more information, please visit http://www.potsuk.org/ , a site recommended by Doctors, and one which I refer to on a daily basis.