Ellie: The Start of a New Beginning
My PoTS story all began with me having a Tonsillectomy. Unfortunately, my recovery didn’t go smoothly, and found myself back in hospital terribly sick, with a blood clot and infection after suffering a server haemorrhage. I cannot be certain but I believe this all triggered PoTS for me, from then out I felt extremely tired and light headed, little did I know much more was to come.
A few months later I suffered from a lung infection, which caused me to be bedridden for three weeks. Every time I got out of bed not only was my chest in agony, the room would spin uncontrollably and my heart would beat out of my chest. Once I recovered from this, I returned to work, where things were already difficult but I had to continue as normal. Not knowing by then I was showing increasing symptoms of PoTS.
I had decided to book a day off work to attend a festival in Cambridge with my boyfriend, I got in the que to get us some food. Suddenly I felt very light headed, this then progressed with black dots in my eyes… this is all I remember. I then found myself being picked up by a complete stranger off the floor. After this I went to return to my boyfriend and again I can’t recall what happened. When I came to, he was holding me up and asking me what was happening, I felt so humiliated I headed home in tears.
These incidents occurred again and again, to which I suffered some bad injuries, including a concussion from hitting my head on a corner of a bedroom table whilst fainting. I said to myself that enough was enough and kept making doctors’ appointments, seeing out of hours GP’s and spending time in hospitals too. Some of the diagnoses that I got were, anaemia, diabetes, viruses and my all-time favourite "young women faint"!
My doctor then took me seriously once I had fainted at work and had an ambulance called out for assistance. I was then referred both to Addenbrooke’s hospital and Papworth hospital, for further tests. The consultants were shocked at my heart rate and realised something wasn’t right.
From MRI’S, Scans, ECG’s and having a 48 Hour heart monitor connected, they finally decided to book me in for a tilt test. My results came back positive for having Postural Tachycardia Syndrome, however when leaving the hospital, the only thing I was told was to Google it and get my GP to prescribe some BETA blockers. I really didn’t think ‘PoTS’ was a big deal at all, but the symptoms still kept coming and I kept fainting! Once I had researched PoTS myself I realised this wasn’t a simple cold, virus or something I was going to quickly recover from.
From that day I realised my life was about to change forever! I began to find some daily activities were not as simple as before, such things as getting up from bed, standing in the shower and walking short distances. Seeing my life change so suddenly at 22 years old, caused me to spiral into a whirl pool of depression from which I had no escape and I isolated myself from the ones I loved, which resulted in me taking anti-depressants/ anxiety medication.
I noticed the attitude of colleagues and bosses at work became a lot less friendly! My health had now started affecting my work, with sickness time off, shorter hours and when in work struggling to control my anxiety about PoTS (what people thought of me) and my work environment was not helping the symptoms. I was in the position where my health was causing me to be discriminated against in the work place, but of course they made other excuses to try and push me out the door. I was refused occupational health as well, I wanted to discuss how I was feeling to prove there could have been obvious ways to assist with my condition. However, my boss and HR were not willing to accommodate any needs to help me and with this I saw no other option but to leave the company.
To top everything off my physical looks began to change; I had become very pale, tired with bags under my eyes, as I was suffering from sleepless nights. My weight was constantly changing and either found I had lost too much weight very suddenly (Once having medication for PoTS, this went the opposite way, with me constantly gaining weight and bloating from a high salt diet). I wasn’t able to be in the sun long periods of time, which is a shame as I love having a tan. I was constantly covered in cuts and bruises from falling by near fainting or completely fainting.
The worst experience I’ve had was; when fainting whilst straightening my hair. I woke up and got ready for work as normal, then went to do my hair. Whilst standing up I straightened my hair and again, with no memory of what actually happened I fainted. When I woke, I felt stinging in my face which increased to burning. After checking in the mirror I had realised the straighteners had obvious fallen on my cheek and head when fainting/ falling? I had to quickly rush myself to A&E before the burns got worse and the Doctor had said ‘I was lucky to wake when I did as no one was home, then who knows what could have happened’.
A few months ago I had another surgery, this time to assist with finding out more about my PoTS. I have a Loop Recorder inserted in my chest, this was upsetting for me! I didn’t expect my life to be like this and at such a young age to be having this treatment. Although I have realised this is for the best, more progress on helping me with my condition and further monitoring from a hospital without back and forth appointments.
Even though this has all happened, I’ve come to realise… I can do this, I can get through this and still enjoy my life! I find having a routine has really helped me with my symptoms, also I love music and find certain songs give me the inspiration/ motivation to keep a positive attitude, and make me realise I am lucky, I should be thankful that all I have is PoTS and not something more serious.
I can honestly say I wouldn’t be able to share my story and be so accepting now about this if it wasn’t for the support I’ve had, from friends and family. My family have never let me go through any of this alone. They have been there taking me to appointments, letting me cry on their shoulders and enjoying the good days together.
I have a very close network of friends, who have supported me through this. They never let me feel left out or excluded from anything and we still enjoy our social gatherings, which really helps me feel that even with PoTS I still am like everyone else.
My amazing boyfriend, has accepted me just the way I am! I have never felt so lucky in my life to find someone who supports me the way he does. Through all the struggles, bad days and events that have happened, he has been there no matter what. We’ve now moved in together to start our future and I can honestly say, I am so excited to see what the future holds.
The only advice I can give to someone going through this, is don’t give up! Do not let this beat you, I really wish I had learnt this sooner. This is an illness, not be all and end all of your life. If you feel alone talk to someone, because you’re really not and I’ve learnt this from family/ friends, social networks for PoTS, therapists and even consultants. Try things and find out what works for you, I find carbs actually help my PoTS even though most people feel worse from them. Be realistic about what you want to achieve in a day… week or even a year, you know yourself better than anyone else and only you know how much you can accomplish.
Thank you for taking the time to read my story.