I never planned this journey. It certainly wasn’t an experience I had on a ‘must-experience’ bucket list. That list (which only really exists in my head), is full of exhilarating experiences in far-off lands and these days, usually involves camping in the wilderness and searching for bears. 🐻❤️
I’ve backpacked solo around the world.
I’ve bungee jumped off a bridge in Canada and ridden all the rides at the top of the Stratosphere in Vegas — while it was snowing.
I grew up watching Jaws and developed a fear of sharks (thanks, Spielberg). So I learned to scuba dive. I’ve dived with reef sharks, hammerheads and oceanic whitetip sharks. And I loved it!
In Iceland, I climbed volcanoes and glaciers.
In Costa Rica, I hiked through jungles and ziplined through cloud forests. I’ve jumped out of a plane, gone caving and abseiled down subterranean waterfalls in New Zealand.
I even joined the British Army as a reservist, for a while.
This adventure was different though, I felt lost and it made me question everything
Will this stop me travelling and adventuring around the globe? How will this affect my career, my personal life? Am I going to lose my independence?
These thoughts and questions haunted me for a really long time.
And this new adventure turned out to be a life-long, never-ending one.
I want to share my journey to a diagnosis of chronic illness, because it’s something which could happen to you or a loved one. If it does, it’s important to become your own advocate. You need to equip yourself with the necessary knowledge, so when you feel like you aren’t being taken seriously, you are in a position to challenge that.
Because sometimes, you really do need to challenge your doctor or consultant.
I was referred to a rheumatologist in September 2011. My GP thought I was developing an autoimmune disease, a connective tissue disease like rheumatoid arthritis or lupus. I really appreciate that doctor taking me seriously and immediately referring me to specialists. That doesn’t always happen.
I had a lot of blood tests. Some of them were positive, others came back negative. I had nerve conduction tests and x-rays too (both negative), but still no diagnosis and still a wide range of symptoms throughout my body, which were driving me crazy.
My body no longer felt like it was mine anymore.
I know, that probably sounds kinda strange to healthy people, but to those who live with chronic illness like I do, I know some of you will relate.
So I started to read. I work at a university, so that enabled me to access research papers. I also bought books about autoimmune diseases and related conditions.
Some books recommended that I record my symptoms and frequency. So I did that too, in a Word document. I took my notes to my rheumatologist and I kept track of my appointments in Evernote.
My rheumatologist referred me to a number of other specialists. I saw physiotherapists, occupational therapists and psychiatrists.
When I was referred to psychiatry, I went with an open mind. However, I felt my rheumatologist viewed my physical symptoms as psychosomatic. I guess arriving at appointments, armed with lists of symptoms, made me look like a hypochondriac, rather than prepared.
The psychiatrist referred me to liaison psychiatry and I received cognitive behavioural therapy (CBT). CBT is incredibly useful. I did my CBT homework, reading extracts from medical books I was given. And I set goals, to pace my activity and I did my best to achieve them.
A week later, I received a call and was advised I had abnormal results. I needed to return in 3 months. That turned into 9 months. So it was around April 2013 when I had my last appointment with that rheumatologist. It felt like a lifetime waiting for that appointment. Waiting for answers.
During that appointment I was diagnosed with fibromyalgia. That only happened after I challenged my rheumatologist who was about to discharge me again.
Fibromyalgia is a chronic illness with no cure. It’s a spectrum disorder, meaning everyone with fibromyalgia will experience it differently. The cause is not fully understood but common symptoms include:
Diagnosing fibromyalgia is difficult and it takes time, for a few reasons:
Despite the stressful rollercoaster that it was getting diagnosed, it didn’t completely take over my life. I still worked full-time and I spoke at education conferences. I completed my dissertation and graduated from Sheffield Hallam University with MSc Technology Enhanced Learning, Innovation and Change.
I spent a month travelling the USA, from Boston to LA and I returned to the USA again for a couple of weeks, spending Christmas and New Year in the Southwest.
I’m not going to pretend it’s easy, waking up exhausted and experiencing pain and other sensitivities, every single day. It’s tough.
We have to adapt our lives, but it’s still possible to have a life with fibromyalgia.
And it gets easier, because you know what you’re dealing with and can develop a plan and toolkit to support you.
I was one of the lucky ones.
According to Fibromyalgia Action UK:
Fibromyalgia remains undiagnosed in as many as 3 out of 4 people with the condition, with diagnosis times averaging 5 years.
It’s Fibromyalgia Awareness Week 2018 (2nd-9th September 2018) and the focus builds upon the theme of International Fibromyalgia Awareness Day (May 12th):
Don’t Delay, Connect Today
This theme is inspired by the European League Against Rheumatism’s (eular) ongoing ‘Don’t Delay, Connect Today’ campaign, which highlights the importance of early diagnosis and recognition of fibromyalgia, as well as early access to treatments.
Think about your workplace, your school, college, university or community. Think about the number of online ‘friends’ you have. How many people do you know, who could be living with this invisible, debilitating and life-changing condition? Maybe they don’t even know it yet, because like me, when my symptoms emerged, I’d never heard of it either.
Originally published at medium.com