So I guess this is hello, Salut, Ni hao, Shalom, Kon’ nichiwa or Howdy!
I’m Amber and it’s a pleasure to meet your acquaintance.
So what is there to know about me? hmmm. Let’s try to keep this short and sweet.
I’m 23 years old and I was diagnosed with Myalgic Encephalomyelitis (M.E), probably better known as Chronic Fatigue Syndrome (CFS) in January of this year (2016). Learning to live with this invisible chronic illness has been incredibly tough, I started the year barely able to get out of bed on most days and certainly barely ever left the house. After 6 months or so i was feeling so much better, in comparison, that I started to do alot more. I was going out for lunch, drinks with friends, just general walks, shopping etc.
After another month of feeling like i was getting better and able to do more, even if it was just in comparison to the previous months, I started to flag. The persistent activity was causing continuous smaller crashes, but i was continuing anyway in the hopes of a vaguely normal life and to keep up with those around me. It wasn’t a sustainable lifestyle as each crash was getting worse and I was heading towards a full on relapse, back to that place of staying in bed most days.
Not too long ago (less than a month ago) I started afresh. I took myself back to ground zero, back to my complete baseline in a bid to build myself back up in a slower more maintainable and healthy way. In doing this I decided to start documenting my life on Instagram, in some kind of an attempt to see the changes and keep track of even the small achievements. Because even the small achievements should be remembered and applauded, as they are what will spur you on towards the greater much bigger ones.
And that in turn has lead me to here, thinking that a place to write my thoughts more in depth as opposed to a caption on a photo might be quite therapeutic.
But I’m not just my illness there is so much to me than my M.E, even if that is the point of this whole thing. I’m British, so giving in to stereotypes I love my tea (although it’s herbal now can’t be doing with that caffeine). I’m a film and theatre lover, and a big book lover too (i haven’t been able to read a book since i was diagnosed though). I’m also a huge lover of the English language, when I can remember my words (stupid brain fog) I love beautiful sounding complex words that say everything you want to say all in one word. For instance defenestration is the act of throwing someone out of a window, or sonder is to realise that each passerby has their own life just as vivid and complex as yours, or limerence is the state of being infatuated with another. I make myself sound quite romantic and wistful, but I assure I’m just a great big clumsy ginger oaf!
So there you have it, that’s me and how I’ve found my way here. I wonder where I’ll find myself next.
Amber and M.E. 