My body is venting its anger at me for working 6 days a week this month and insisting on having some semblance of a social life. Apparently these things are not compatible with CFS/ME, or so the throbbing legs, stinging eyes and brain fog tell me (brain fog = CFS term for cognitive disfunction…you know, when your brain totally freezes…can’t think a complete thought, and you keep rereading the same paragraph over and over and over…).
I still get SOOO FRUSTRATED at not being able to be the driven person that I want to be…achieving things, experiencing things, socialising, living. As sufferer Eric Vought wrote, “It hurts. It hurts to watch while someone does something you love and cannot do.” And yet I know I am still so blessed….not sick at all, compared to many CFS/ME sufferers (many are bedridden). I have lived so much. But still, the frustration of my limitations just makes me want to punch something. But thankfully, I don’t have the strength for that.
So it’s times like these when you like to hear news like this:
“I believe we as a community are closer than ever to a change in the weather, that the bleakest moments of what feels like an eternal winter, will pass. We are uncovering more and more of the underlying mechanisms, painstakingly piecing together a huge medical jigsaw puzzle. Dr Don Lewis has been instrumental in this process [Dr Lewis = my family’s hero!]. This will translate into better care for patients and there is definitely the potential for curative treatments over the next decade. We are watching history in the making. We will feel the comforting warmth of summer and this endless cold, dark winter will pass.” – Dr Nicole Phillips, excerpt from ME/CFS Australia Emerge Journal Summer 2010.
Exciting times. So much unknown, but looks for the first time like questions are going to be answered, and solutions explored.
PS. looks like I’ll be starting a new IV treatment (GcMAF – as far as I understand, it’s the activator for your macrophages – boosting your immune system) as soon as they can get it into aus. hmmm. For now, just hanging out for fiji…and a week in a hammock.