I expect my story begins like most. I was 23. I was working as a nurse in a job I loved, surrounded by great friends and family. Life was good. I was at work one morning and began feeling really unwell and incredibly dizzy. I was taken to A and E as I work in a hospital and they diagnosed a viral infection. After some time off and rest with my parents the symptoms subsided and life went back to normal. Looking back now this must have been the cause of My Pots although the doctors can never tell for definite.
Several months later I began having episodes of feeling exhausted, like I could no longer even lift my head or move my arms and legs. I would also feel my heart racing and begin to feel dizzy. I’m a fairly stubborn person and don’t like to accept when something is wrong so often ignored these episodes and tried to continue. But as we all I’m sure know you can’t ignore Pots. I began to get progressively worse over the next few weeks. And began to pass out at work, home and most embarrassingly in public. I had multiple visits to A and E, and my GP and tended to receive the same answer, “Don’t worry its normal for a woman your age, just get on with it” (because the world is full of 20 something females collapsing all over the place).
I thought that I was going mad and that all my symptoms where in my head. I continued to try to push myself to the limit, but things just got worse. I was having so much time off work and there were questions as to if it was even safe for me to be allowed to nurse patients. Finally at breaking point I pushed my GP to refer me to a cardiologist. And this was when I met my consultant. He was amazing. He recognised from the start that there was clearly something wrong and that I needed further investigations. The official diagnosis came after a most eventful tilt table test, and a ten day stay in hospital. The relief I felt when I heard the words “you suffer from a condition called Postural Orthostatic Tachycardia Syndrome”. I had an answer and diagnosis. But as we all know this wasn’t the end. I didn’t miraculously begin getting better once I had a name. Months of medications testing, what worked best for me, what didn’t. And forever having to explain to people I have a condition and if I pass out Please, Please, Please do not call an ambulance. I became apprehensive if I had to go places on my own or with people who either were unaware of my condition or unsure of how to deal with me if I was unwell.
I’d think that things where improving then I’d push myself too far and pay for it for a week. All I wanted was to be myself again, but the old me felt like she had gone. I felt I had lost my identity and that Pots was becoming me, I felt guilty for the pressure I was putting on friends and family. I have the most amazing friends and family. They have supported me through everything and coped amazingly well even if at times I have terrified them if I have been unwell, or been the most obnoxious person taking my frustration out on those closest to me. They have been forever positive and have dragged me from times of despair reminding me of everything that is good. They have also helped me look back and laugh at the times when I have collapsed in most embarrassing places. (Such as at a Take That concert. Please if you have Pots don’t try and dance to never forget. It does not end well).
Although things where beginning to become more stable work was still an issue. My sickness levels were terrible, which coming from someone who barely had any time off sick just a few years before was hard. I had multiple meetings with my boss and HR trying to prevent me having to be redeployed. I felt I had already lost my identity I didn’t want to lose the one thing that I felt was still me. My boss was/is amazing she had seen me through since the start and I know that I was incredibly lucky to have her support. We played around with my hours dropping from long days to 8 hourly shifts. I also dropped to 30 hours a week. Slowly but surely over the next year with medications, work/life balance things have improved massively. So much so that I have only had one episode off work with Pots in the past year (although this has scuppered my work mates longstanding nickname of Drop A lot, I think that this will however never change). I have also just completed a 15 mile walk to raise money for my ward. Something that I couldn’t have even contemplated this time last year. (Although would in future have a few more days off after such a long walk. As my Pots did flare up, just to remind me it was still there.) I’m still incredibly proud of my achievement and have to thank my best mate for the training and support she has always given me.
I haven’t shared my experiences openly before, but felt that I wanted to just let people know that it does get better. A chronic disability is life changing, but you must always remember who you are and to accept your condition but not let it take over. To know that even at your worst moments there is always a light at the end of the tunnel. And most importantly remember to laugh!!!