Sarah
Hello, My name is Sarah and I am 40 years old. I hope by sharing my story it brings a small amount of positivity and the notion to hold on, that hope never ends!
I first experienced debilitating symptoms, which were first thought to be a virus, in 2018. I was experiencing brain fog, a racing heart, palpitations and a general sense that something was not right, feeling generally unwell.
Over the course of 5 years, many hospital tests, admissions and of course countless GP visits, I experienced door after door being closed – being told “It’s in your head” “It’s Anxiety.”
It took one door with one knowledgeable specialist, where I was subsequently listened to, tested and diagnosed with PoTS and other chronic conditions, including being registered blind, Fibromyalgia and Chronic Fatigue Syndrome.
Initially the first paramedic I ever saw suspected PoTS but it took 5 further years for an official diagnosis. Don’t give up hope! Keep knocking on all the doors until you find the right one for you! Keep asking questions!
Receiving a diagnosis came with mixed feelings of relief, sadness and a fear over what the future may hold. I was working as a qualified teacher and found the standing up increasingly difficult, along with extreme palpitations when moving around and syncope unfortunately meant I had to give up my much-loved position. As summarised by @chroniceileen “One of the most difficult parts about living with chronic illness is how motivated I am and have lots of plans, but I am trapped in a body that is constantly fatigued, in pain and in need of rest. Some days I can only do the bare minimum and experience maximum guilt.”
For myself, a combination of heart failure and PoTS (which is less common), caused further impact on my life as the treatment for both contradicted one another. I was able to be referred for tilt tests which not only confirmed PoTS and IST, but additionally Hyperadrenergic PoTS. This has been a steep learning curve, but it has changed me for the better!
Over time I have tried many possible drug treatments – beta blockers like Bisoprolol, Ivabradine, Alpha-Adrenergic Agonists like Midodrine and Clonidine with varying levels of success. These have only been effective to a certain point and improved my condition and quality of life slightly. I have found making non-medical changes the most effective, including pacing myself, taking a perching stool when I go out and mentally adapting what I can do on any one day, trying to not put as much pressure on myself. I also use the spoon theory daily and think about how I use my spoons to complete tasks and manage my day. In spoon theory, spoons represent both the physical and mental load required to complete tasks. People with chronic conditions such as PoTS must ration spoons to get through the day and it has become known to explain how you are feeling and coping day to day.
6 years later, and I feel in a much stronger position to be able to help others. I still get sad and frustrated that chronic illness has so drastically limited what I can do…but I’ve learned not to blame myself. Sadness can give rise to self-compassion and self-love. I am now committed to raising awareness of PoTS and Chronic Conditions. I spend my time volunteering and making a difference. I am passionate about challenging perceptions of PoTS and Chronic Conditions and cultivating inclusivity for all. I am aware of the challenges and difficulties pre and post diagnosis and I love to educate others about this misdiagnosed and misunderstood condition, reducing isolation and making the community accessible to all.
I would personally say you know you best. Listen to your body. Do not give up searching for answers. Go prepared to appointments having researched before and have questions ready. Be prepared to go for second opinions – trust yourself! Find something that you enjoy, pursue a hobby. For me personally, it is arts and crafts…this saves me many a time in the middle of the night when unable to sleep!