In My Story, readers share their unique, life-changing experiences. Today, we hear from Maria Jones, 45, from Aberdeen.
It was about five o’clock in the morning when I got the call to come to Edinburgh hospital. A young man had died in a traffic accident. They had permission to give his organs away, and I was one of the lucky people to received one.
I first realised something was wrong with my health in August 2003. I had flu-like symptoms, which returned in September and October and November. I felt horrid with joint pain and thought: “That’s not right.” I went to my GP and said: “Look, I’ve had the flu every month since summer, that doesn’t make sense.” They didn’t really believe me.
It was a battle to get some blood tests done, because the GP said: “It just happens sometimes.” After three appointments she agreed to run tests, but then Christmas came and I was still waiting for the results.
Then, on January 14, I called the out-of-hours GP because I was struggling to breathe. I felt pain every time I inhaled and they told me to go to A&E. My blood results indicated that the inflammation in my body was off the charts. I was immediately told: “You’re staying, that’s it. We’ll find you a bed. It doesn’t matter which ward it’s going to be, but you’re going to stay in hospital tonight.”
More tests revealed my diaphragm had almost stopped working and I had lost lung capacity, due to the inflammation in my body.
I had treatment to relieve the symptoms and more appointments over the coming months, but I still didn’t have a diagnosis. By August of that year, I felt well enough to go on holiday with friends to Corfu. Then things got worse.
We were travelling around on this massive yacht we’d hired and it was lovely, but there was nowhere to hide from the sun. I had to get off the boat and stay inside a hotel for a few days, because I was throwing up, I had headaches and severe joint pain and fatigue.
When I got home, the doctors ran more tests and told me my kidney function had deteriorated significantly, to the point where I was now facing acute kidney failure. They went into a panic!
They gave me a kidney biopsy and a full year on from the onset of my ‘flu’ symptoms, I was diagnosed with lupus at the age of 27.
Lupus is an autoimmune disease, where the immune system gets very confused and starts thinking your own body is the enemy, and therefore starts attacking your body, causing systemic inflammation.
People with lupus can often be hypersensitive to sun and light. In my case, doctors attribute my kidney failure to the Corfu sun exposure, because it caused the immune system to overreact and attack the kidneys. They do not think that I ever had the flu.
It is a little bit heartbreaking to receive a diagnosis of any sort, but it was also a relief.
By the end of 2004, I’d had about 20 weeks off work from my job as an offshore process engineer in the oil industry. I was very, very unwell for half the year. A diagnosis was hope that things would get better.
It usually takes two or three years for someone to get a lupus diagnosis. The doctors are very, shall we say, careful about it, and I think that’s because it’s associated with quite harsh treatment.
As soon as I received the diagnosis, I started receiving chemotherapy to tame the overactive immune system, similar to that of a cancer patient, and that has its own complications and implications, of course. I repeated this treatment once a month for a year.
By the end of 2005, I received three IV transfusions of rituximab – a very new treatment for people with systemic lupus – and that did the trick. By 2007, I was 30 years old, symptom-free, and doctors said I was well enough to pause treatment and try for a baby.
Thankfully, I became pregnant very quickly, but looking after a child had the most detrimental effect on my condition.
I don’t know whether it was the stress of being a mum – because stress is a massive contributor to lupus – or whether it was because my son was bringing back illnesses from nursery, but I was becoming unwell a lot more often.
Every time I caught a bug, my kidney function would drop. In 2007, after having the baby, the kidney function was at about 60%. By 2009, that dropped to 25%. In May 2011, I caught the flu – properly, this time – and it went down to 11%. The kidneys are not like the other organs that can recover. Once your kidney function is gone, you’re never getting it back.
There was talk of me starting hemodialysis, which I really, really didn’t want to do. The idea of my blood being pumped out of my body, getting filtered, and getting put back in was like: “Oh my God, no, that’s not for me.” I was added to the transplant waiting list.
I don’t know much about the young man whose kidney I received. He was in a coma after a traffic accident. They unplugged him to see if he could support his life on his own. That didn’t happen. When a donor dies like that, at least five people benefit from it. He saved my life.
My son is now 14 years old and I’m pretty healthy and happy right now. Throughout the progression of my disease I practised yoga alongside treatment to help relieve stress and manage my symptoms, and I’ve turned it into a career.
I retrained and am now fully accredited to teach adapted yoga, helping those who are less able or chronically ill. I founded my business, Yuva Yoga, and specialise in chair-based poses for people with conditions like MS, fibromyalgia or chronic knee pain. I started building a network of people who need yoga, who didn’t even think they needed yoga, and was asked if I could train carers in care homes. It’s become the gateway to making my job more meaningful.
I want to share my story to help others facing a life-changing diagnosis. I want people to know that they still have power in their lives, regardless of the diagnosis they receive, and that they still have a voice.
Keep advocating for your condition, keep learning, and keep asking – either yoga teachers or your doctor – for more choices than the one that they think is the only solution. Chances are, there is more out there.
Maria was interviewed by Rachel Moss and her answers were edited for length and clarity.
To take part in HuffPost UK’s My Story series, email uklife@huffpost.com
