Hi everyone!

I know I haven’t written for a while – I was a bit busy when my cousin (whose wedding I went to in the States earlier this year) decided to spend her honeymoon here and then I got sick again – its possibly the flu but definitely not COVID-19.

In the meantime, I’ve also been to a new rheumatologist who has diagnosed me with Chronic Fatigue Syndrome (CFS). Still going to do other tests to rule out a few other concerns, but I do present with the classic symptoms. The cause of CFS is still highly debated, but my case is likely to have started almost 20 years ago, back when I contracted glandular fever (GF) – no I didn’t kiss anyone, but I did share a drink with them – it was explained that viruses such as GF tend to hide in the nervous system and emerge when the carrier body becomes less active – in my case, it would have started after my shoulder surgery, and intensified after my bout of COVID-19 in June this year. I wondered why I had the brain fog, the continued exhaustion (to the point where getting out of bed is an effort), increased inflammation, shortness of breath and chest pains (and probably explains why the pericarditis isn’t getting better) and just all round living a ‘can’t be f***ed’ mindset. Whilst it was suggested to me previously that I could be a candidate by the previous rheumatologist, no further action was taken until I was referred to the new, super awesome doc. Currently I am on new meds (taken alongside my old meds) which are anti-depressants, but if they don’t work then we will need to look into more heavy grade drugs such as amphetamines.

Doc seems pretty optimistic about improving my situation – he says that exercise, as counterintuitive as it sounds, is a really good way to manage CFS and the game plan is to get better step by step. We are not planning for a complete recovery overnight, but baby steps over a two year period. One thing that I have to be aware of though, is not overdoing it on my ‘good’ days, which I am guilty of. When I wake up feeling good, I try to do everything – meal prep, take my doggo on an extra long walk, run everyone’s errands, you get the picture. The new rule I need to live by is to not try to achieve more then 20% over my bad days on my good days, otherwise the one step forward will result in ten steps back. Yes it will be frustrating, but so is being so damned tired and out of it that people around you just think you’re an idiot or not paying attention.

One thing that has always been difficult for me – when I had GF, pericarditis, vestibular migraines and now CFS – is convincing other people I’m not okay and not well. It’s partly because I manage what needs to be done (and internalize my struggle) and also because, unfortunately, there is a stigma around invisible illnesses – I haven’t used the term ‘disability’ because it is still contested as to whether or not it qualifies. If we can’t see it, we are less likely to believe that it is present, and in fact may either believe the person to be deluded or making excuses/making it up. However, knowing this now means that I can start making improvements in how I handle my day to day and focus on getting better – as we all know, being sick is expensive; my rheumatologist is $435 a visit (with about $240 rebated through Medicare) , plus medications and petrol to get there, but if it makes me better, I’m all for it. Imagine being so tired that eating is an effort. As someone who loves food, this is both out of my vocabulary and painful to endure.

I suppose the best mentality now is to focus on the positives and ignore the horrid, entitled people that are at work.

Wishing you all good health and happiness.

Bx