{"id":7808,"date":"2020-07-18T14:02:46","date_gmt":"2020-07-18T18:02:46","guid":{"rendered":"https:\/\/dsavannah.com\/blog\/?p=7808"},"modified":"2020-12-11T14:26:27","modified_gmt":"2020-12-11T19:26:27","slug":"brain-fog-and-birthdays","status":"publish","type":"post","link":"https:\/\/dsavannah.com\/blog\/index.php\/brain-fog-and-birthdays\/","title":{"rendered":"Brain fog and birthdays"},"content":{"rendered":"

Last month’s post<\/a> kicked my ass. Of course the act of writing was difficult; it was hard enough to articulate my thoughts on #BlackLivesMatter without being accusatory or making it about me, but also, I cried a lot trying to write a proper tribute to Bryher<\/a>, who we’ve lost too soon. (And all because of careless people who think this virus is hoax, or who don’t care if disabled or elderly people die.)<\/p>\n

Buuut, I also forgot to do something technical. Very menial and tiny and easy to do, but I still forgot. (A great reminder of how much I’ve lost due to my illnesses – “detail oriented” was literally one of my top strengths on my resume and at job interviews and in my career.)<\/p>\n

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My hope plant<\/a> with yet another new leaf, this one reaching towards the sky. (A photo of this works when I can’t think of anything else, right?) 7.14.2020<\/p><\/div>\n

That one little thing I forgot set off a cascade of technical issues (that I am unable to describe and you probably won’t even understand), and I ended up sending out the blog post twice to my subscribers. (Sorry, y’all!) And it went on and on…<\/p>\n

And then on June 26, I stupidly DELETED MY PUBLISHED POST, which meant that the link I’d shared everywhere no longer worked. Thank you to all the other chronic illness bloggers who had recommended I switch to my current web hoster, Lyrical Host<\/a>, who, upon receiving my anxiety-laden request, did a workaround for me by 5:32am (my time).<\/p>\n

My old hoster would have been like “eh, too bad” and I’d still be kicking myself for making such a huge mistake, but T<\/span>H<\/span>A<\/span>N<\/span>K<\/span> Y<\/span>O<\/span>U<\/span>!<\/span><\/strong> to Lyrical Host for fixing it without complaint, and telling me not to feel bad for making it. (So seriously, if you need a new web hoster, or even if you don’t, check them out.)<\/p>\n

Also during the time I was writing the last post, I had to reschedule four doctors’ appointments that got cancelled due to the big Q, and that involves consulting not only my calendar, but also hubs’ work calendar, and his parents’ doctors’ appointments calendar too, since hubs has to drive them to doctors now as well.<\/p>\n

(Have I mentioned how blessed I am to have a husband who does practically everything for me, and a lot for his parents too since their health is declining and they can’t drive anymore either, and he does it with hardly any complaint? {I mean, it’s normal to vent; he’d have to be a robot or android not to have feelings about how awful this is for everyone.} Well, I am. T<\/span>H<\/span>A<\/span>N<\/span>K<\/span> Y<\/span>O<\/span>U<\/span>!<\/span><\/strong>, darling.)<\/p>\n

Since then, I’ve had to schedule three other appointments (or is it four?) … and apparently one office now has the nurses making appointments, which is a giant headache as of course they are, you know, helping patients who are actually in the office!, so that has required several messages via their portal and phone.<\/p>\n

Calling and coordinating requires so much cognitive energy, it basically uses up an entire day for me. And then ruins the next day, because it makes me crash.<\/p>\n

I tell you all this as a reminder that although the finished blog post possibly appears to have arrived flawlessly to my blog, it doesn’t. Ever. It takes a lot of effort. And if I’m working on my blog, I can’t call doctors. And if I’m calling doctors, I can’t work on my blog. Not just, obviously, at the exact same moment, but that same day. It takes all of my cognitive energy, and that’s it. My usable hours for that day are spent.<\/p>\n

I also say this to remind you how debilitating my disease is. Although I’ve basically stopped going anywhere or doing anything, and my life as it was is completely out of reach for me now, stolen away from me, I am bound and determined to not let Myalgic Encephalomyelitis (MEcfs)<\/a> steal my words.<\/p>\n

As I’ve told people, writing this blog and doing advocacy is an act of defiance for me.<\/p>\n

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Getting older…<\/strong><\/h2>\n

dSavannah note:<\/b><\/span> I posted most of the below on Facebook with the photo of myself. I thought I should share it here too, tho I’ve edited for errors and to add a few additional thoughts.<\/p>\n

\"image<\/a>This past Saturday (7\/11) was my 49th birthday.<\/b><\/span> The fifth I\u2019ve \u201ccelebrated\u201d as a full-time sick person. Without a party. Without much of a fuss, tho I love my birthday and always have. (It’s my absolute favorite holiday!)<\/p>\n

I got up and got dressed because it\u2019s my tradition to take a photo ON my birthday. (My hubs sweetly takes a bunch of pics for me because I inevitably have my eyes closed in 3\/4 of them.)<\/p>\n

So I put on a shirt I haven\u2019t worn in who knows, and a necklace we got a looongg time ago on one of our jaunts, antiquing in Arkansas.
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What you can see: the glasses due to vision degeneration, the grey in my hair from getting older, the crow\u2019s feet.<\/p>\n

What you can\u2019t see: the glasses need to be replaced because my vision is worse, but the eye doctor closed for a while, and then I had to cancel an appointment due a crash. (Thankfully, I get to see her on August 4. I am so NOT looking forward to searching for new glasses, because I hate doing that! but I am VERY MUCH looking forward to getting new glasses, because these are compounding my headaches since a) they aren’t fitting quite right and b) the prescription isn’t correct so I’m constantly squinting to try to see.)<\/p>\n

My hair hasn\u2019t been washed since Wednesday (7\/8). It only looks good in the photo because I managed to get it cut on Thursday (7\/9) and of course it looks magic after it\u2019s been styled professionally. Of course now, over a week later, it looks awful, but I don’t have the energy to shower.<\/p>\n

My back is killing me – spasms & burning. My head hurts. I couldn\u2019t get out of bed until about 2pm. The weight of the necklace is causing me pain. (I couldn’t stay in that outfit very long; about 30 minutes later, the necklace felt far too heavy and the texture of the shirt was bugging me, so back into comfy clothes I went.)<\/p>\n

Oh, and my voice is gone again.<\/p>\n

I had as lovely a day as I can, considering, and am grateful for the cards and presents I received. (Thank you cards are forthcoming, I promise!)<\/p>\n

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My 9th birthday, 40 years ago. First party I can remember. (Sorry the photo is blurry – this is long before digital!)<\/p><\/div>\n

I was a bit naughty and had a White Russian with my dinner (gluten free pasta from Tony’s at Brentwood<\/a>, a real Italian place; thanks hubs for picking it up and bringing it home!). Part of this illness is alcohol intolerance, so I paid for that drink with a shooting migraine up the side of my head (bummer), but I was able to enjoy a few bites of Tony’s most excellent tiramisu without issue (which I shouldn’t be able to eat, as it’s made of … ladyfingers, which are made of flour…).<\/p>\n

We watched one of my very favorite stupid funny movies – Nacho Libre<\/em><\/a> [affiliate link<\/a>] – and also Bad Boys<\/em><\/a> [affiliate link<\/a>], which hubs had never seen, which is also funny and dumb. (Both available on Netflix.)
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I posted my portrait on Facebook and was overwhelmed with comments and kindness. I screenshotted them (for my “happiness jar”) and it took 24 to get them all!<\/p>\n

My life looks completely different than it did on my 39th birthday, or even my 43rd! But: I\u2019m still here. I\u2019m still fighting, every way I can, not just for me, but for others. My ability to do so may be lessened, but who I am, at my core, still exists.<\/p>\n

And: I’m hoping I can have a party next year for my 50th. I love bringing people together. And I used to have epic birthday parties. Guess I’ll start saving up energy now!<\/p>\n

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Endorse me for the WEGO Health Awards!<\/strong><\/h2>\n

\"Wego<\/a>For the second year in a row, I’m honored to say I’ve been nominated for \u2735three\u2735 WEGO Health Awards<\/a>: Advocating for Another,<\/strong> Best in Show: Blog<\/b>, and Best in Show: Facebook<\/b>.<\/p>\n

My last post, Help Me Help Others! \u2013 year 2<\/a> talks about the awards and how to endorse me.<\/p>\n

Or, you can go straight to my WEGO profile<\/a> and click the thumbs up! Endorsements are open until July 31.<\/b><\/span><\/a><\/span><\/p>\n

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Things you should read<\/strong><\/h2>\n