One of my last blogs prior to the CFS/ME/Fibro Twitter list was about dealing with a “relapse”. I put that in inverted commas because 1. It wasn’t, and 2. Relapse always seems a strange way to describe an illness that hasn’t actually gone away in the first place.
Well, after that long intro, it turns out it wasn’t a “relapse”, inverted commas or not. The extreme fatigue and virus-like symptoms I was experiencing were the result of a stomach parasite masquerading as a virus. I didn’t think I’d ever be so excited to hear I had a parasite inside my stomach!! I had/have a creature inside me that’s feeding on my precious nutrients and sucking my energy – and I’m excited!! (The last time I had such a parasite inside me was 10 years ago while I was pregnant 😉 – sick humour, I know, but more true than funny! For the uninitiated, I totally adore my daughter and think she’s the best thing to ever happen to me :-)).
I don’t even have to tell you, the person with CFS/ME, why I was so excited. You already know. Yes, I was excited because, for a change, I had a treatable, “normal” person’s illness that would actually GO AWAY with a short-term treatment. Healthy people wouldn’t get that excitement. Healthy people would probably freak out a little at the thought that they had a parasite inside their belly (as I saw a few people around me do when I was happy dancing my way through telling them about my diagnosis).
But people like us with a long-term, chronic illness that has no set treatment or prognosis for recovery – WE GET IT! How many times have I visited a medical practitioner or natural therapist to hear them basically say they have no real idea how to treat me? In my case, with the electrosensitivity, I seem to have baffled almost every practitioner of anything who I’ve seen in the past 10 years (excepting my amazing chiropractor/kinesiologist Dr Tracey Lademann who diagnosed the pyroluria last August AND the current stomach parasite).
I’ve become used to seeing the puzzled looks on practitioners’ faces (that they mask very quickly so as not to seem like they have no idea what to do with me!) and the generous, yet quite often shot-in-the-dark attempts to suggest a possible action/treatment to try – “Well, we could try ….”.
I’ve got used to the comments of “well, I’ve never seen this before, but …”, or “you’re a bit of a different case …” – AKA “you’re quite bizarre, weird, out-of-the-ordinary, and I truly have no idea how to treat you, but if you’re willing to keep paying me money I’ll keep giving it a good, old, hearty try”. And these are the ones who I’m incredibly grateful to, as opposed to the one who, in the very early days, told me I was obviously stressed and depressed and should see a psychiatrist (cue referral written and passed across the desk to the inconsolable patient who had previously trusted said medico completely. Said medico sits with a confirming nod looking at the emotional mess of a patient and thinks his day’s work is done ;-)).
They always say “Be careful what you wish for”, and as I learn more about creating our own reality, I think the caution is very true in my case. As a kid/teenager I was determined to be different, to stand out from the crowd, to be unique and have a huge impact on the world. Arguably the huge impact is still on its way, but different, unique and stand out from the crowd – CFS and electrosensitivity have accomplished those goals incredibly well!
But today, after almost 2 weeks of treatment with a herbal parasite-killer (technical term ;-)), I’m almost back to my CFS/pyroluria/electrosensitivity “normal”. It actually only took 2 days for me to start to feel better. The intense fatigue lifted after 5 days of treatment. Oh, for it to all be so simple with the rest of my recovery … although the pyroluria treatment is definitely working and I’m feeling heaps better than I did 9 months ago, but it’s much more gradual. Gradual is FINE with me though, after more than 20 years of no answers to the CFS (if it indeed has been CFS and not just the effects of the pyroluria. Jury still out.).
I guess the motto to all this is, when you think a new symptom or return of a previous one is just another part of this bizarre and unpredictable illness, just bear in mind it could actually be a more simple, treatable answer. For all intents and purposes I felt exactly the same physically as I had in my worst phases of CFS/glandular fever fatigue, BUT it turns out there was another cause – and a simple treatment.
It’s easy for us to give up bothering to visit doctors and other health practitioners for our symptoms because we just don’t want another experience of walking out feeling we are “hopeless cases”. BUT you just never know. Don’t give up hope! (And find a good kinesiologist – they are worth their weight in gold in my humble opinion! :-)).