My story is very similar to other patients’ stories in that it took me a few years to receive a diagnosis and that I was dismissed as an “induced-fever case” or as the origin of my fever being psychological. Ring a bell? Thought so…
From what you might already have guessed, my problems started with remaining low-grade fevers following a bad chest infection 20 years ago when I was 23. I had always been healthy, without any colds or the flu – ever. What I did have were “growing pains” since childhood with pains affecting my knees and “travelling around my other joints”. Naturally, no doctor believed me back then attributing it to me not wanting to go to school.
I have also had livedo reticularis since childhood which nobody ever noticed and I always considered it a souvenir from a bad fall when I was being a little tomboy up to no good. Fast forward, after the chest infection which lasted almost a month despite being on antibiotics, I was left with daily low-grade fevers between 37.2C and 37.5C.
The only person who believed me and fought for me – to his credit – from the beginning of this was my GP in Greece. Even when I thought it was all in my head, he didn’t. He insisted I get checked out for everything because this low-grade fever was not normal. Notably, I did not have other significant symptoms at the time. But he was not discouraged by this either. He referred me to have a ton of tests over the following couple of years including blood tests, X-rays, MRIs, CT and PET scans, bone marrow aspirations, biopsies…I was lighting up like a Christmas tree after all that radiation. Alas though, all of them were normal. Very “funny” to be wishing results come back with something, isn’t it? Something – one positive test – that will confirm your illness claims. That will convince you that you are sane after all…
However, after the first three months of the appearance of the fevers, more symptoms started developing slowly in addition to the low-grade fever that had turned into a proper fever of 38.3C – every single day. Joint pains and stiffness, mouth ulcers, weight loss, headaches, brain fog, a general feeling of malaise which got worse in the summer especially after a couple of hours on the beach accompanied by a rash and fatigue were part of a causal day. Still nothing showed up on tests and doctors did not even believe I had a fever despite this being the only measurable sign which was recorded during both my hospital stays for investigations of “the fever”.
I also had a very strong family history of rheumatic conditions from both sides on my family which again didn’t seem to be of any apparent importance to doctors, either. It was very hard to keep running my foreign language school and keep on teaching while going through all of this but I did. 2.5 years later, my ANA turned positive and my rheumatologist at the time diagnosed me with SLE and put me on Plaquenil which helped a bit but a few months into the treatment I got pericarditis. I was prescribed steroids and life went on. Headaches were still a daily phenomenon though and so were the fever and the brain fog. Then, suddenly, one day I woke up and had blurred vision. That was the time when I got really alarmed and knew I had to go further.
I did my research on the internet and decided to see Prof Graham Hughes privately to get a second opinion. It was the best decision I have ever made because he diagnosed me with antiphospholipid syndrome and put me on warfarin after a trial-and-error phase. Since then, no headaches, no brain fog, no fevers except when my INR falls below 3. It took four years to get there but I had my life back! Well, most of it at least. I could once again enjoy simple things like going out with my friends without feeling I would collapse any minute, having dinner without someone needing to cut my steak for me because my joints were so painful I could not do it myself. I also had terrible mood swings which completely went away too so I was less of a pain to friends and family.
This whole “adventure” has taught me two things. One: never ever allow anyone to make you doubt yourself and what you are feeling. If you feel unwell, then something is wrong and you ought to fight to get an answer and feel like yourself again. I cannot count the times I started believing that it was all in my head. That I was being weak and perhaps just needed a holiday. I was working 65-hour weeks yes, and yes, I also was under tremendous pressure and stress but that wasn’t the reason I was unwell (although it didn’t help, of course). Two: once I got my health back (so to speak), I decided that life was too short and that I wasn’t happy doing what I was doing.
So, I sold my business and came to the UK to study Psychology in the hope to be able to help patients one day. It definitely wasn’t an easy decision. It was very challenging but it was the best thing I have ever done. Or second best anyway. Fifteen years forward, I have managed to finish my undergraduate studies, followed by graduate studies and a PhD. I have chosen to stay in the UK and I have been working in research including rheumatology with the aim to try and make a difference to patients’ lives through research.
Of course, my “adventure” did not finish when I received a diagnosis (or two) and started feeling like my old self again. After every majorly stressful event in my life, I seem to be pushed one step back health-wise and am left with new souvenirs. While I was writing up my PhD thesis, I was under so much stress that I had a flare and had to start taking prednisolone.
Still, I am planning on doing another professional doctorate. This time the aim is to be able to help patients in a clinical capacity too. To combine research and clinical work so that it can feed into each other and improve care and quality of life for patients with chronic conditions mainly in the fields of rheumatology and oncology more effectively. The next extremely stressful phase that took me back another step triggered an urticarial vasculitis episode which led to my commencing azathioprine too. Thankfully, Prof D’Cruz knows what he is doing.
Yes, I am on three times as many medications compared to fifteen years ago BUT I am also three times more determined to live life to its fullest and not be intimidated by anything anymore! To me, flares are a reminder of how important simple things are and how appreciative we have to be of the good days and make the most of them. Compared to fifteen years ago, I am significantly fitter now, running half-marathons and playing tennis three times a week (heck with so many pills I ought to be going to the Olympics hahahaha). I even tried kickboxing, which I loved, but had to give up due to frequent injuries and the massive flare of 2017.
But I discovered my other big love, tennis. There is always the proverbial window that opens when a door shuts. You just have to be able to look around and see it. And choose to open it fully. Never ever give up. We all get tired, yes, we all have days of self-pity where we cry like babies because even lying down hurts or we are feeling so exhausted we can’t even get a glass of water, yes. But think of the good days too. The times when we can enjoy the sun (with SPF 100 naturally), the fresh breeze, nature, work and beautiful moments with our loved ones. Humans can be amazingly resilient and bounce back from very traumatic and challenging situations. We have managed to battle through our conditions and become stronger because we chose to do so.
Life is beautiful and we ought to be living every minute of it with passion and determination! I know I will! Be strong! Be fearless!