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I was diagnosed with Chronic Fatigue Syndrome

WORDS BY SOPHIE MCRATH

Chronic Fatigue Syndrome affects 1 in 100 Australians. This is Sophie’s story.

My name is Sophie McGrath. I’m 30 years old, I run my own public relations business, and I was recently diagnosed with Chronic Fatigue Syndrome (CFS).

I’m lucky that I was diagnosed within a matter of months. Some sufferers go years without a diagnosis or are misdiagnosed due to the grey area that is CFS. For me, it was a relief. I had been exhausted for a long time.

I’m writing this with a few aims: to help people understand CFS; to make people who manage their CFS feel less alone in their experience; to help anyone who needs to put themselves first, and to bring attention to a disease that is not often discussed and is sadly shrugged off as not being ‘real’.

Let me tell you – it’s real. But there are different symptoms for different people. Mine started back in December. Maybe they started before then, but I didn’t take any notice or they were barely there.

I’d just finished work for the year. Working for myself, I have the luxury of deciding when I finish work and I assumed, like most times, that me getting sick could be attributed to the intensity of the months of work leading up to that point. Except for this time, the sickness never left.

I had a sore throat, no energy, body aches, a persistent headache and mental fogginess. I felt incredibly fatigued, had palpitations, and then finally came nausea. That was was my ‘I can’t take this anymore’ moment.

I went a full week and a bit with these unusual bodily sensations and excruciating nausea that stopped me from living a normal life. I had no appetite and started losing weight. The worst part is that by the end of that week and a bit period, I felt pretty normal and decided to head out with my best girlfriends for our annual Christmas get together.

I was full of energy that day, I felt good and was enjoying myself and then by the early evening (and after a few drinks), the crippling fatigue and nausea came back and I could barely speak or sit up. I called it early and went home to sleep it off.

My GP wasn’t sure what was wrong with me, and rightly so. My symptoms could mean so many different things. We checked for everything, starting with pregnancy (which everyone had assumed I was, but I knew for sure I wasn’t), a whole lot of blood tests, B12, folate, and thyroid.

We tested for coeliac disease, a stomach ulcer, gastritis, pernicious anaemia… the list goes on. To be honest, reviewing the results now, I can’t work out what half the stuff I was tested for even means. 

I spent December, January and most of February feeling very tired, anxious, and nauseated and just not feeling like myself. I wasn’t functioning like I used to. I had to leave conversations and events abruptly, I couldn’t drink a glass of bubbles without wanting to be sick and I would skip social events to stay in on the couch.

Friends saw the change in me. For someone that was always geared up for a good time and socialising with loved ones, I just couldn’t do it anymore, no matter how hard I tried to sustain an active lifestyle.

Unfortunately, we don’t know much about CFS. How I came to be diagnosed with it was due to my very excellent and thorough GP going through a process of elimination with all those tests. She recommended I see one of the few auto-immune and CFS specialists in Australia.

In my appointment with the specialist, he criss-crossed between asking about what I do for work, what my childhood was like, whether I had past traumas, how I deal with being angry or upset, can I say no, what do I eat, do I exercise, do I journal, am I creative, am I anxious, and can I switch off? By the end of it, ironically, I was even more exhausted.

He diagnosed me with CFS, but luckily for me, even though it may have been brewing just below the surface for years, he considered it to be an early discovery and one that can be managed with a revised daily routine.

He mentioned – and my research shows – that many people can go for years without a diagnosis or are misdiagnosed due to lack of understanding and, I guess, a lack of empathy for CFS sufferers. The same goes for closely related auto-immune diseases like Lyme and Hashimoto’s Disease.

There’s no cure, just management. It’s something I’ll have for life but it can come and go. It goes if I maintain a healthy routine and it returns to rear its ugly head if I fall back into over-exertion in all aspects of my life, both work and play.

I continue to do all the right things – I eat well, I exercise daily, I do yoga and I try to meditate or at least find some stillness in my day. I get enough sleep, I have a gratitude journal, I limit work, and my morning routine is mine and it’s sacred. These are things I’ll continue to do to help manage the miserable fatigue.

I see my acupuncturist once a week who supplies me with my ‘battery pack’ each week – thank you Dr. Abbie Acupuncture! I stick to a daily routine, but sometimes I sleep some more if necessary.

I see a psychologist to talk about how I’m tracking, I’m booked in to see an exercise physiologist, I keep hydrated and take a long list of herbs and supplements. There’s plenty more on my list that I’m yet to trial which sufferers have said worked for them, including CBD oil, ice baths, and regularly seeing a naturopath and a nutritionist.

My life isn’t threatened, I’m not dying and I guess I like having a label, as for a while there, no one knew what was going on. My diagnosis allows me to work through it and to get on top of it, because it can be done. Well, in my case it can, but for plenty of sufferers it can’t.

The hardest part for me is all to do with my cognitive ability (my concentration) and being social, both in my personal life and at work. As it turns out, energy-wise my body reacts to being at a social gathering the same way it reacts to physical exertion – too much and it becomes overwhelming and unbearable with the potential for a total crash.

So, for now and for the next 12 or so months, the socialising is minimised and the work meeting requests are declined unless absolutely necessary. Socially, on a good day, I probably have three hours, maybe four at best, in the tank before I get this glazed-over look on my face that screams ‘take me home and tuck me into bed’.

If I were to ignore the pending fatigue, I can start to feel super nauseous, very tired, a little dizzy, I’ll have little or no appetite (and for someone that loves to eat, this is a strange feeling) and most of all, I have absolutely no energy, not even enough to speak.

If I overdo it, which can sometimes be too easy to do, the next day can feel like the world’s worst hangover, only without the alcohol. Side note: I’ve stopped drinking alcohol because for me alcohol mirrors CFS symptoms and makes them 1000 times worse. 

It all boils down to pacing myself to avoid a crash and, if it comes, resting during and after a crash. It means not having too much on my plate, cancelling appointments and catch-ups if I need to for the sake of my health and limiting social activities for the time being.

These are all things that I’m not used to doing, but it’s in an attempt to conserve my energy and get on top of this illness so that I can be back at 100 per cent again somewhere down the track. 

The amount of suffering for people with chronic, unexplained fatigue is vast. I’m not there but some people’s inability to get out of bed or make it through the day is devastating, frustrating and terrifying. People who fall into this abyss have often been extremely productive and their active lifestyle has ended up being to their detriment.

I’m sharing my experience as I know there are plenty of people out there who suffer from chronic illnesses, whether they know it or not. There’s also plenty of negativity around CFS, with its sufferers being described as lazy or just needing to head to bed earlier to “catch up on sleep”.

This illness is completely invisible but the pain is just below the surface. To the driven types, the givers and the non-stoppers, the people dealing with crippling trauma, I ask you to take care of yourselves. Listen to your bodies – really listen to them – and take a step back if necessary.

emerge.org.au

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