How many times have you heard “just go for a walk and you will feel better?”
Trying to explain Fibromyalgia to family and friends was surprisingly difficult; I mean how do you explain to someone something YOU don’t even understand? After learning more about it my symptom list grew loooooong. So many things I had been experiencing I could now put down to Fibro: my numb hands, my restless legs, my endless fatigue and I finally had something to blame my awful memory on!
“Brain Fog” was a term I had never heard before. I had always thought my brain just had a hard time remembering things, like words half way through a sentence. Embarrassing I know! You see, I was one of those kids that didn’t really fit into mainstream school. I ended up leaving when I was just 14 years old so I have never been the most academic or intelligent person around, but now maybe I had a reason for that? I’ve always wished that if only my memory could be better, I would be smarter. Over the years I studied so much stuff, I was interested in learning everything, but try asking me a month later about it and I had forgotten everything that I’d read. Just ask my kids and they will tell you I have the worst memory in the world, haha! It was sometimes scary but now that I’d joined these Fibro groups and had found my people I realised I was not alone, many people suffer Brain Fog.
I thought getting my head around the symptoms was a massive effort, but getting my head around treatments… what the fuck? And always, the inevitable advice: no Mum, I can’t just walk it off because then I’ll be in bed for days in pain. I have always supported natural alternatives so that is where I began with treating my Fibro. I got an appointment with a naturopath and a few hundred dollars later I was taking all kinds of supplements and cut out gluten and dairy in my diet. I was the natural queen, ready to KICK FIBRO’S ASS… yeah, so that didn’t work out as planned. I soon realised that keeping up with all the supplements would send me broke, gluten was in so much food and I loved cheese. If I’m honest, I gave up on the diet because I just did not have the energy for it. Slack, I know! I did however take some things from what I learned and continued to integrate them into my lifestyle, and I will definitely spend more time talking about these in future posts. Enter phase two, put my tail between my legs and head to the Doctors for medication… it’s ok though, I am still a queen.
“I look those haters straight in the eye, keep my chin up and shoulders back. Because I know I’m a fierce queen – and they know it, too.“Alyssa Edwards
Talking to my Doctors over time it became pretty clear that I was nothing more than a guinea pig that they began trialling medication on. I’m pretty sure I even saw one Doctor googling Fibro as I was talking, what the fuck? As of today I have not successfully found a medication that has helped; they have either done nothing, or made everything worse (even ending in a trip to the ER, but that deserves a whole post of its own).
The sad thing is that I am not alone in my experiences. It is happening all too often, simply because not enough is known about Fibro and what works for one person does nothing for the next. I guess it is up to us warriors to push for change, to stand up and DEMAND change… but not for too long, because then we’ll end up in too much pain, haha.
This is definitely something I am going to look into going forward. I want to read studies and join movements and find a way I can help to create change so that we can go to the doctors and not be told “it’s in your head”, “I have no idea how to help you” and so on; and people will never have to just tell you to “walk it off” anymore. I can’t promise I will remember everything I read, but hopefully with this blog I can write it all down before it gets lost in my head, never to be found again.