8 months after receiving a diagnosis, I am doing much better. I have many days where I feel well, I have energy, and I can spend time doing the things I love, with the people I love.
But I am nowhere near a level of health that I am happy with. I still have many days of sickness. The last month has been particularly bad, for reasons I’m not entirely sure of – stress I’m sure is a factor, having just moved house and having some emotional stresses recently too.
My latest bloodwork showed that my oestrogen levels are within the normal range, although still on the low side. All my other hormones are now normal, presumably thanks to the medications I am on and the lifestyle/diet changes I have made.
My attention recently has moved towards other factors besides hormones. Ultimately I have a burning desire to understand WHY this has happened to me. Sure, my hormones have been all over the place and I know that this makes me very sick. But WHY does it make me sick? There are millions of women all over the world with PCOS, but most of them don’t have CAEBV. I believe that something has gone fundamentally wrong with my immune system. I believe that being on the contraceptive pill at such a young age may have had something to do with that; the undeniable link between my symptoms and contraceptive pill use in my teenage years points me in that direction. But I’m not on the pill now, and my hormones are (relatively) normal. So why do I still get sick?
In creating the ‘About ebv’ page for this blog, I have found some new research about CAEBV. I have yet to read them in full (academic publications about the immune system don’t exactly make for light reading…), but I am hoping to get a better understanding of what scientists DO know about CAEBV, and what treatments are being investigated. I know that my chances of receiving any of those treatments anytime soon are very slim, since most of them are only in the experimental stages. But knowing that there are people out there trying to make sense of this illness, and trying to find novel treatments to improve the quality of life of people like me, fills me with so much hope. I am so unbelievably grateful that I have a diagnosis, that I have the ability to follow and understand the science, that there are people out there trying to find answers, and, most importantly, that I have wonderful loved ones who are on this journey with me.