It must be almost a year to the day that I first came down with an illness that gave me headaches, sore throat, burning skin, full body rash and finally resulted in waking on Christmas Day to painfully swollen feet, ankles and hands. I started the day unbelievably tired and struggled to walk on my tender feet. A week or so later I was diagnosed through a positive blood test, but incorrectly as it turned out later, with Ross River Virus.
I often wonder had the GP gotten my diagnosis correct in December, would I have still struggled on for 3 months, trying to work 4 days a week, raise a 2 year old, socialise and lead a team of sales people to what my company sometimes called a BHAG – big hairy audacious goal. Would I have given my body the rest it desperately needed and the nutrition to fight the virus and would this year just gone have turned out differently?
But as it was, by the end of March I was in a heap. I was so exhausted and run down I was making mistakes at work, taking things very personally and falling asleep on the couch whilst in charge of my daughter.
Sometime around then, a rheumatologist who had seen my symptoms before, re-tested my blood and found a recent Human Parvovirus B19 infection – a common childhood illness known as either Fifth Disease or Slapped Cheek which causes arthritis symptoms in adults – and a negative result for RRV.
I suppose I should have thanked him but he uttered the words ‘don’t expect to get better over winter’ and thus condemned me to a long, difficult, cold winter of struggle. All he was guilty of was being right and those words stuck in my mind all through the darkness of that winter.
Almost every day I researched online looking for stories of recovery, wading through information on supplements, not understanding why from the outside I looked perfectly fine (if a little grey and drawn) but I wasn’t getting better. I wasn’t returning to 100%. I wasn’t back to normal. I read over and over again different ways of telling me that medical science has no clue what keeps you sick after a serious viral infection.
By June I was seriously fed up of lacking energy. I’d had to step down as manager and I was working minimal days in a store as they powered on towards what had been our goal together. I booked an appointment with an infectious diseases specialist and watched from the sidelines as my team achieved their goal.
Gathering my blood test results from the GP, I looked over them in preparation for my appointment and noticed back in December a positive result for Epstein Barr. It was a ‘memory’ result which indicated past exposure but the infectious diseases specialist agreed I had almost certainly had a glandular fever infection mid last year and was tipped over the edge by Parvovirus in December. What one virus didn’t ravage the other did. Glandular Fever exhausts you, like you’re on the brink of the flu all the time. It clouds your brain, sometimes your eye sight, it makes you oversensitive to loud noises and often upsets your digestive system resulting in food allergies and intolerance, making it near on impossible to nurture your body. Parvovirus brings bone pain and nerve damage, twitching and stabbing pains and skin itching and tenderness. None of which respond to conventional approaches. The itching would not be affected by antihistamine; the pain would not be touched by painkillers.
What the infectious diseases specialist did inform me of, in his extremely thorough manner was nutritional deficiencies – Vit D, B and magnesium were all too low.
And so began an entirely different path and instead of looking for ‘what’s wrong?’ it became ‘what can I improve?’. Some visits to naturopaths delivered some seriously quacky advice. I took homeopathic amounts of strychnine for arsenic/heavy metal poisoning which resulted in vomiting. I broke out in hives from head to toe, I spent a day feeling like I was leaning backwards every time I stood up and the Health hotline urged me to call triple zero for an ambulance (I didn’t, I was too tired). I spent an entire month with a bad taste in my mouth which was probably an intense candida infection but also meant I could hardly eat. I lost in total about 7 kilos and struggled even more with energy.
Fatigue became my biggest adversary. It was present when I woke up, reminding me I can’t do things, and if I was feeling this bad when I woke up imagine how bad it’ll be by tonight. My social life dwindled to zero, but I only occasionally minded because quite frankly I was too tired. I chose to put my daughter first and at her age, now 3, she was happy to play tea-party’s and do puzzles and read books. All sitting down things.
Eventually late August, I made some big dietary changes, having gotten to the point where ‘I couldn’t give that up’ became ‘I will try anything if it will help’. I removed dairy and it helped. It lifted my energy from a 2/10 to a 4/10 but that seemed like an incredible leap after such a long time. I began to cut out added refined sugar and eventually cut out grains as well. I reduced my alcohol intake to maybe 2 glasses a month. I weaned myself down to one weak coffee per day and this is my only treat now. I added digestive enzymes to my multitude of supplements in the morning and I truly expected that this would be the magic bullet. Finally, this would work.
I’ve tried very hard. But I don’t feel any closer to having found an answer or any wiser about why this has happened or how to stop it/help it.
On a good day I feel tired, but able to achieve things. On a normal day I also have stomach aches, muscle pain, sharp head aches, I have difficulty finding words to finish sentences and like with any illness, I feel down. On a really bad day I fall asleep shortly after getting up, I am cranky, miserable and frustrated and all I can do is sleep and wake from sleep feeling nauseous.
I have never regained my full energy level and I have forgotten what it feels like to wake up refreshed and ready to start the day. In some ways this is a blessing, because for the first few months I could still remember that trip to the zoo, early December, walking around all day in the sun without any difficulty. And that hurts to remember because of what I lack now. As I wrote back then ‘it’s like an emotion, I can remember how having the energy made me feel, but not what it feels like to have it, when I return to my body, it’s still just telling me it’s tired.’
Now, I have to ask myself, do I want to feel like I am doing all I can, or do I want to just let it be and recover. How do I know it’s not working? I feel like I am bumbling along blindly not knowing what to do or if it is going to work. But I can gauge – with the help of this blog – that I am slowly recovering, or accepting – it’s difficult to tell the difference.
I do still wish that I could find someone to take my hand and say ‘I know what to do, follow me’ and it will be right, not some other chemical/supplement/recommendation, but that isn’t going to happen. I can’t help but continue to be interested in other people’s stories of recovery but I have been disappointed over and over again when what worked for them, didn’t for me. I would have hoped to have a list by now, of all the things I did to recover from Glandular Fever (because saying Parvo come with too many dog jokes) but I don’t. Maybe next year.