You know when you meet people, and find out they have an illness - whether that is visible or not - and sometimes are curious to hear their story?
This is my story; and I am hoping it will help people not only seek treatment, but also know that there are more like them then they may think! The only thing that really got me to understand my own illness was to read stories like the one I am about to tell you - it gives you motivation, hope and also - for those who need it - someone to relate to. We are real. We are out there. We can have a life of achievements; despite whatever we may have.
It all started when I remember as a teenager, more in the late teens, constantly going to the doctor with my mum to get blood tests done. I was always tired, and I always had low iron. I remember my mum saying “you shouldn’t feel this tired, at your age I was doing so much more”. The truth was, I was always feeling this in-your-bones exhausted, and I thought I was perhaps catching colds but not actually getting sick.
When I hit my 20s, I was desperate to find out how to improve my fatigue. I also had times where I was so exhausted, and I had body-wide pain, the best way I remember telling the doctors I saw was “it’s like I have the flu, but I am not sick”. I was usually stuck in bed for a day or two, because I could not function; or I would be sleeping at work in the conference room for a quick 20 minute refresh to function until the end of the day. Migranes, body wide pain, extreme fatigue where talking was even exhausting and overwhelming and not being able to focus, think or function. It was like everything shut off for a few days, and then it lingered for a few weeks until the next time it hit. I found I was very sensitive to chemicals such as alcohol and medications; which added the burden of taking something knowing that it took twice as long for me to get it “out” of my system than normal.
The doctors of course did not believe me when I told them I barely drank alcohol, did not drink coffee, did not smoke, and never took illicit drugs. They wanted to blame my symptoms on my age, as “usual” people my age did all those things and more. They really seemed like they were at a loss as to how a non-smoking, non-drug taking, non-partying quiet 20 something year old can be exhausted and not depressed either; but sure, it made me sad about how I did not know what “normal” really felt like.
I asked myself questions many times, maybe it’s normal to feel this way. Maybe everyone feels this way. Maybe this is what ageing is.
However, it was when I met my now husband that I started to realise I should push for more answers. Stav, who survived a childhood aggressive cancer; was diagnosed with a rate autoimmune kidney disease while we were friends. He kept pushing me to try and find out why I felt the way I felt; and eventually I finally got answers.
Deep down, I knew it was not normal. I noticed if I did anything out of the ordinary, my body would pay me back for it - and I was only just in my 20s. So, I came to the conclusion that surely, my friends and relatives my age do not feel this way as they always seem the opposite to I am.
I would say I do remember when it got bad. I was 22, as I remember it was every six or so weeks I found myself with this “flu” knocking me down, going to the doctors yet again. But each time in that year, instead of 1-2 days it would be 3-6, then 6-12, and sometimes longer. Now I would know these “flu” like symptoms were flare ups of #fibromyalgia.
In 2018, was when the condition really took hold. I was 24. It all started with my neck - I diddnt even injure it, but it was such extreme pain, my shoulders, neck and back could not be moved. The doctor called it "T4 Syndrome' and gave me muscle relaxants, NSAIDs and pain relievers. I remember I was going to photograph the Darwin GleNTi, and I begged the doctor to give me something to help as I was dedicated to not miss out on that event. I had a string of weddings also that year. I just couldn’t bear to cancel. I absolutely needed to function - I could not let these people down.
I managed to get to the event, dozed out from the medications still unable to move my neck or function normally but I did it, and I was proud. However, nobody knew how much pain I was in and what effort it took me to smile and be my normal self with a heavy camera around my waist. They made a barrier to help me, which it did to avoid moving through people too much - a huge difference in my weekend.
A few months and thousands of dollars on physio appointments later, my neck, shoulders and back were only mildly improving. I went from a person never taking panadol to taking panadeine and muscle relaxants often, trying to give a few days break between doses because I was scared of being reliant on them. I was going to the chiropractor, physio, massage therapist, acupuncturist weekly. The pain was unbearable, and at night I would whimper in pain as it would then be body-wide. Think perhaps a night of dancing, you lie down and feel the muscles as if you have run miles mixed with a body-wide flu. Now, do you think you can sleep with that?
I remember hearing the word “fibromyalgia” from a physio first. I never gave thought to it, as I was still in the process of heaps of tests. Next, my doctor then brung it up casually; but he said 'you are too young though, most people with fibromyalgia are over 30 or have had something traumatic like a car accident to trigger it - and you are in neither risk group'.
I was referred to a rheumatologist soon after with a six month waiting list in the private system, with a few unexplained results in my tests.
"well, I can say you do have Fibromyalgia - but to be safe I will send you to a neurologist to confirm"
At the neurology clinic, the neurologist did the same thing the rheumatologist did - pressure tests in my 'trigger' points, manoeuvres, and a few other things. Back to the rheumatologist a few weeks later, it was confirmed and I finally had a name to something I did not understand with my body. It was fibromyalgia.
Fibromyalgia is a weird condition to put it 'straight'. It is chronic and is lifelong. Basically, the nervous system is over-active constantly, causing the brain to be easily overwhelmed with 'stimuli' and thinking the stimuli is pain when it may not be pain. Think sunburn on non-sunburnt skin, vertigo when you have not been on a boat, migraines over no apparent reason, brain sometimes cannot process things when a day before you were just fine. The list can go on and on!
Researchers over the last 20 years have found many new things about the disorder, one of them being that it is a chemical imbalance within the brain and spinal cord affecting the nervous system.
"Fibromyalgia is the second most common rheumatic disorder behind osteoarthritis and, though still widely misunderstood, is now considered to be a lifelong central nervous system disorder, which is responsible for amplified pain that shoots through the body in those who suffer from it." - American Pain Society
I have to live a relatively low stress life, eat low-processed foods, avoid alcohol consumptions and even overloading on gluten and acidic food/drink can trigger a flare up. I also need to exercise; which is weird because too little and I get worse symptoms and too much a flare up will occur.
Sometimes, I still am learning - I forget as I like working - and unfortunately, overworking can cause flare ups. Last year, I decided that 2021 was the final year for weddings and major events; as doing them during a full-time job sent me to a burnout mixed with the worst flare up of my life so far. I ended up in the emergency department in October 2021 - because I could barely walk or hold a conversation - and my husband had to help me with everything. I was a shell of myself and I would not wish it on anybody being as independent as I was, it sure was a lesson to stay in bed for so long.
Now with fibromyalgia, and flare ups like the one I just spoke about, it can be abit hard for people like me who have “an invisible illness”.
First of all, when I told the few people I knew, most were relieved I finally had an explanation as to why I felt the way I did, especially my parents- as it explained why they noticed certain things and why I was always too tired. However, others had expected comments; I guess, not everyone can understand and that is okay. I did have people say “but fibromyalgia doesn’t have a test for it”, “are you sure the doctor is right”, “maybe you just work too much” amongst other things.
Trust me, if you were in my body feeling the way I do daily; I really don’t think many would function in a day let alone me who works in differing things #kindaproudmoment. Invisible illness, especially fibromyalgia is real. It is not in your head and certainly exists. Not every disease or disorder has to have a test or be visible; my worst days sometimes I looked great and was even told “but you look totally fine” when in reality I wasn’t. That is how invisible illness works unfortunately. I was diagnosed by two doctors and then a neurologist and a rheumatologist; all who knew what it was, followed the diagnostic rules and knew what to do.
In the process of everything, I did meet one amazing person like me. This person helped me understand my condition better on a personal level, from their life experience with it. It made me understand it easier and feel I wasn’t “crazy” because I had the same weird symptoms as they also did. This person, Sylvia, is now an Alderman! She helped me at times when I did not know what to do; once I had a severe flare up and it was on the day of an 8 hour wedding. Sylvia came to the rescue with a box of remedies to get me through the day; and I always look back at that day and know how much someone with fibromyalgia helped me because they know what sometimes does work and what doesn’t when you really can’t see a doctor. Also, to be honest, I really don’t like doctor offices or hospitals so it made it easier!
If you have Fibromyalgia; feel free to reach out. I hope this story inspires you to share your story too.