So. I have decided that since this week is going to suck donkey balls through a straw, I’d post something small and (hopefully) positive each day.
Today starts with a bit of myth busting for any new or particularly forgetful readers:
1) I was diagnosed nearly six years ago with Sjogren’s
(I explain my brand of Sjogren’s by saying it is like lupus and MS as people have usually never heard of Sjogren’s), fibromyalgia
(chronic widespread daily pain and fatigue), PCOS
(messes with hormones), hemiplegic migraines
(these are hella freaky: migraines that mimic strokes) and am currently suffering from vertigo attacks (although the consensus on that is that they’re Sjogren’s related). These illnesses are chronic (meaning they never go away on their own) and incurable (meaning there’s nothing to make
them go away). I’m stuck being sick. For… well, the rest of my life. I have medication that helps me manage these diseases and some of them work better than others.
2) Phoe. It’s pronounced fee, not pho. And no, it isn’t my birth name. It’s a name that my dad gave me in my early 20s (I crashed and burned A LOT back then). I have always hated my birth first name. It felt like someone I never was. I remember wanting to change it back when I was 4.
3) I live in England but am originally from California. (Born in Southern, lived my highschool/college years in Northern.)
4) J’s my husband and he’s English. Which means he’s got an accent. And he’s a dear sweet man who cooks. And does dishes. And he’s a musician and a painter. And an utter and complete goofball. In short, he’s near perfect. (But don’t tell him I said that, his head would explode.)
5) Photography. I have loved being behind the camera since I first got one (back when I was 7 ish). I took a semester of photography in high school but other than that it’s just been practicing and trying to learn what I like. I use a Canon 40D and I do *not* use a 50mm prime lens. I use a 20mm f/2.8 for every day stuff. I did try the 50 (both f/1.8 and f/1.4) but I just didn’t like the results. I, like every one else out there, would love to go full frame but at the moment I don’t have a need to.
And today’s positive thing: I’ve got a new outlook on life this autumn. It’s down to a number of different factors, tiredness, frustration, impatience, the Fishbowl, stories and photos that woke my brain to the possibilities.
I can’t get into details yet, it’s still forming. But I can say that it’s doable. The biggest stumbling block in my old life path was that I can’t do it anymore. I just physically can’t. And my new outlook? I can. Gone are the hows and whys and shoulds of my pre-university years when there was a plan and bugger all, it was rigid and conforming. That old path was like a post-apocalyptic city, all dark and dank and poorly lit. The new path so far is just a giant field of green. In the sunshine. With a gentle breeze, the smell of the ocean mingling with the scent of unseen woods. It’s up to me what this path looks like. Where it goes, whether or not I let it take me or whether I do the directing.
Over the past six (well, to be frank, the last nine years) I have been struggling. J. and I are paying for mistakes we made in that time. And we made many. In relation to people though, I think I made some of the worst. Some bridges were burnt that maybe shouldn’t have been (there was a very real sense of shame and isolation in explaining my health to people who knew me back when I was well), some bridges were burnt against my inclination. Some bridges bloody well should have been burnt. Or never formed in the first place.
I’m 31 now, in a few month’s time I’ll be 32. I have been officially sick since I was 25. Showing specific symtoms since I was about 15. Exhibiting risk factors since birth. You’d think I’d work out that the old way of doing things was bad ages ago. But I’m kind of slow that way.
This week my motto is from Missy’s comment: live gently. And I’m going to add something to that: live joyfully.
Have a good Tuesday.