Jamie

Two years on, I can safely say that it has been one of, if not, the toughest periods of my life in terms of going through the 18 month relentless ordeal of hospital visits, A&E admissions and seemingly never ending days of symptoms before establishing a diagnosis.

I first started to really take notice of my symptoms a few years ago when working within Finance in the City and going through periods of sudden and random weight loss – sometimes 1 or 2 stone per month! This seemed to coincide with severe gastrointestinal issues as well as a new onset of dizziness, palpitations and all the other ‘wonderful’ symptoms we get to experience.

Impact on my ability to work

Unfortunately, this progressed to the point where the symptoms began to severely impact on my ability to work in London – often having to cancel meetings at the very last minute to accommodate my symptoms and general feeling of exhaustion. This was something that I took very hard at the time and I feel much of it stemmed from my struggle to maintain the façade to everyone else that I was coping well – when in matter of fact, it was the complete opposite!

The continuation of my symptoms led to the inevitable and having to make the decision that working in the City was no longer viable for my health. Whilst all this was going on, I was just starting the process through my GP and also privately to try to attempt some form of diagnosis.

I cannot reiterate enough that I believe the hardest part of any chronic illness is the part before the diagnosis – not knowing what was wrong with me and having to explain to friends, families, employers etc that I couldn’t see them that day but not give them a reason as to why was by far the hardest part. I am sure anyone who has been through the same would tend to agree and it is at this point where the inevitable self-doubt begins to creep in and you then tend to question your own symptoms and whether it is ‘in your head?’.

Breakdown in friendships and relationships

This ultimately led to breakdown in friendships and relationships – mostly stemming from my inability at the time to admit and communicate to people that I was very much struggling – something that I am very proud to say is no longer the case, much to the credit of my counsellor who has been instrumental in helping me ‘pick up the pieces’ and start to rebuild my life.

Following this initial onset, it took a full 18 months and no less than 25 consultant visits, 6 referrals and 11 A&E admissions for me to be referred to Guy’s and St Thomas’ Cardiology Unit for Autonomic testing – to finally be diagnosed in February of this year with Hyperadrenergic PoTS.

I will never forget the feeling of walking out of the hospital following my Tilt Table test and almost bursting into tears at the thought that I had finally gotten a diagnosis after all the heartache and misdiagnosis previously.

It is really at this point that my ‘story’ started to turn for the better and it has enabled me to meet some incredible people at Guy’s & St Thomas’, PoTS UK and also other PoTS patients.

My ‘story’ is far from over

Following on from this, my ‘story’ is far from over, but establishing the diagnosis and the subsequent support has allowed me to put the various measures in place such as medication and considerable lifestyle changes that have in turn resulted in me beginning to claw back my health to some degree.

Now going off what I have learned so far, I think it would be very naïve of me to assume that all the hard work is done. I still have some very difficult days with PoTS –  but I am managing and have learned to accept the bad days for exactly what they are – temporary!

The diagnosis has also allowed me to nourish my naturally ‘overthinking’ mind and throw myself into researching the various steps I can take going forward in managing my condition including nutrition, stress management, lifestyle adaptions etc. This is still very much a work in progress for me but it’s something that I am enjoying at the same juncture and I sincerely hope will pay off in the long run.

I truly believe that even though we have been diagnosed with a very difficult chronic condition; we always have a fighting chance and should never stop trying to do everything in our individual power to move forward.

Looking back on the previous few years now, I can recall some exceptionally dark days that I didn’t think I would make it through and yet I would not change a thing!

It may not seem it now, but I have learned through real world experience that the suffering and difficulties we face only prove to shape and build our character further.

You can never truly judge from the outside

I can only hope that my experiences have sought to mould me into a much more empathetic and kinder person – as after all, we all know first-hand that you can never truly judge from the outside what a person may be going through!

The next steps for me are to continue to advocate for my own physical and mental health and I will be pursuing all the options available to do this. More importantly, I would love to be in a position to help others through similar hardships with both chronic illness and mental health difficulties – this is something I will continue to strive to assist with.

Thanks

Finally, I would just like to do the whole ‘Oscars speech’ thing and truly thank everyone who has supported me to a diagnosis and beyond – including PoTS UK, my mental health counsellor, Cardiologist and his team at Guy’s Hospital London and finally my friends and family who never wavered in their support and would have gone (and almost did) to the ends of the earth to help me get better.

Onwards and Upwards!