After Education, I set up my own business as a self-employed photographer back in 2007 and have been working as an outdoor photographer since. I would easily carry my kit for miles a day whilst summiting high ground with an overall ascent of thousands of feet per day. Even an average day in the office would generally end with a minimum of a 2 mile walk in my local countryside. Everything about my life could be summed up with one word “outdoors”.
Landscape shoots would start at dawn (3am in the summer) and end at dusk (11pm in the summer) both of which are testing to the healthiest of people and those of you that have POTS or know of someone suffering with it, will easily understand that my life as mentioned above was about to change. Drastically!
I’m not 100% sure how much of the below is due to POTS and EDS, but thought I should mention everything just in case. It’s quite long - so if you’re sitting comfortably… It all started some years ago, whilst at school (I think I was probably about 14 years old). I had bad stomach problems and spent a year in and out of hospital trying to find the source of the problem. Test after test after test and nothing ever showed up. Eventually I was taken to a child psychologist and she very delicately told me that it was stress related (e.g. All in your head!).
After this my life was never quite the same. I guess being told that you were ‘making yourself ill’ at an early age was not a good thing. I continued my life in fear of Doctors and Hospitals, too scared to go as I just assumed they wouldn’t believe me. I continued to get ill on and off over the next 10 years, but always fought it off, and struggled on. I struggled to fit in with the drink culture at college and Uni (in hindsight I now know why alcohol made me so ill) unfortunately at the time it embarrassed me, so I made excuses. I soon realized that if I became the designated driver then I had the perfect excuse not to drink and that always became my scape goat.
I also struggled with parties and bars and clubs (again I now know that the warm, loud environment was the cause) but at the time I used to have mild panic attacks in night clubs. Even meals out with the family in a hot restaurant left me gagging with nausea (it’s amazing how good I was at disguising it all!). But it was upsetting and really bad - It got to the point that I was planning to secretly make an appointment to see another psychologist in the hope that they could sort my head out again (that is how stupid it is to tell a naive 14 year old that they are making things up!) but I was simply too afraid to go to the doctors so I struggled on as usual. Eventually in my 20s, I had many days were I felt strangely unwell and started to become very tired – despite having early nights. I didn’t think much of it at the time and continued on as normal.
After a photographic trip hiking in the peak district a couple of years ago during the winter, I discovered I’d lost a fair bit of weight. I thought this was due to the cold weather and exertion I had put my body through so didn’t really think much of it at the time. The tiredness really set in during the months that followed and with it the upset digestive system grew much worse than I had experienced before and I began to struggle with a constant nausea. Things started to become difficult with slight dizziness and my camera kit was a struggle to carry, especially with my heart pounding on exertion, but me being me, yet again, carried on as normal.
June 2010 was my last solo trip away; camping and photographing in lake district. I fell very, very ill during those few days and at the time put it down to a 48hr bug. (again in hindsight, I could not escape the heat of the sun, 28degrees with a tent like a sauna, I found an Ash tree that became my place of refuge each day) eventually after a few days I built up enough strength to make the long drive back home. When I returned home I realized that I had lost more weight so decided to try a high calorie diet of 5 meals a day. After two weeks of this I managed to lose a further 2 pounds as well as feeling incredibly ill with stomach cramps and indigestion. This is when I knew that something wasn’t right.
It may seem obvious reading the above now, and it is to me – with hindsight, but you have to consider that my phobia of going to the Doctors was extreme! But the pressure of the silence grew too much and I broke down in tears and confided to my mum - who soon explained that I should have told her a long time ago! Doctors then became involved and we began following various avenues. The first of which was my heart.
I had multiple tests over the following months (constantly fighting with them to ‘prove’ that I wasn’t well) but the results always came back satisfactory, which was incredibly frustrating as I only had to stand up to go Tachycardic!? I had bloods taken to the point that they should probably give me some back, but again and again nothing abnormal ever showed up. (I still had the overwhelming fear that it was all in my head, and with each new Doctor I saw, I felt that they were looking down on me, muttering in their heads that I was wasting their time. (again, you really shouldn’t tell a 14 year old they’re making things up - its clearly not healthy!) The doctors were scratching their heads and even sent me to hospital on different occasions in the hope that they would be able to take things further, but they too scratched their heads and discharged me. I felt like I was in the wrong, and really began doubting myself, was I subconsciously causing this through stress? Yet I knew I wasn’t stressed or depressed for that matter! I was just worn out that I had to consistently fight to prove that something was wrong and that was making me stressed!
The deterioration that was once gradual soon become very apparent on a weekly scale, but fortunately my weight settled (albeit underweight!). Eventually it got to the point that I could hardly walk and simple tasks like brushing my teeth would bring me close to passing out, life as I knew it was gone. My camera bag sat collecting dust in the corner of the room, and I felt trapped in a body that wasn’t mine. It wasn’t so much that it was hard and painful to do things, the fact was that for all the will in the world my body couldn’t do things. I would just plod along breathless, without the energy to move any faster, it’s hard to describe, but if you imagine a healthy person running flat out, as fast as they possibly can and then trying to run faster, for me trying to reach walking pace was as impossible as that.
At this point I pestered the Doctors on a daily basis and soon I was under 3 different consultants at the hospital, another rendition of tests from MRI scan to cameras inserted into dark places, injections in the muscles to yet more bloods taken. Lyme Disease? Thyroid? Gluten-free? You name it, we tested and tried it (it was like being 14 all over again). In between the months waiting for tests, I badgered the consultant’s secretaries, constantly pushing to bring the appointments forward and chasing the results of tests (it was just one big battle, trying to bring my medical notes to the top of the pile) – all the time stressing that although results kept coming back “satisfactory”, there was something very serious going on!
This was when I saw a General Medical Consultant by the name of Dr Sarda. I think he had POTS in the back of his mind, but just to be safe sent me for some other tests and x-rays to rule anything else out. A month or so later, on my third visit with him, he got a nurse to check my pulse whilst standing and laying. I laid still on a bed, not talking or moving for 3 minutes, at which point the nurse took my pulse (118bpm), she then asked me to stand up, I slowly dropped my legs off the bed and stood up, “you look dizzy” she said placing one hand on my shoulder to steady me.
It was at this point that my battle to prove myself was over. As soon as I stood upright the machine started flashing and bleeping all sorts of colours. “That’s not right. That can’t be right…” she checked that the thing was still attached to my finger and then looked at me and said, “I think we’ve found that there is most definitely something wrong”. Within a matter of seconds of standing up, my pulse had shot from 118bpm to 253bpm! Dr Sarda wrote a letter referring me to London to see Prof. Mathias, and immediately prescribed me beta-blockers to control my heart rate (the downside to these is that my BP is now very low).
I eventually saw Prof Mathias on 19th April 2011 and I’m currently awaiting autonomic testing. I have an EDS appointment with one of Prof Grahame’s consultants on Monday (27th June) and I also go to Barts on the 21st July in relation to the stomach problems. Despite being told that I have a chronic illness, I am truly relieved that I can finally understand something that has mentally and physically troubled me for years!