Start humming “Auld Lang Syne.” (Seriously, just work with me here.)
“Your grace will never be forgot
Your mercy all my life
Will be my soul’s forever song
My story and my light…”
It’s easy for me to sit here and bash 2016 for what a horrendous year it was. I’ve already done a pretty good job of that in my personal journal.
I am not yet done grieving the past year and what it did to me. But I would be remiss if I said that nothing good came out of this year. I almost have to grit my teeth saying that, because I want nothing more than to scream and cry and release some serious emotions about this trash heap of a year. But not knowing what is to come in 2017, maybe 2016 can at least go out on a high note.
As the year is (finally!) drawing to a close, I decided to go back and look at some of my old posts to see how life has changed in the past six months since I started this blog. My goal was, and still is, to raise awareness about certain chronic health issues that affect me, including endometriosis, adenomyosis, infertility, depression, self harm, social anxiety, celiac disease, pituitary tumor, and I guess that pesky little aneurysm.
Now that Christmas has come and gone, I suppose it’s time to be like everyone else and write about it! I’ll start with Christmas Eve, since that’s when all the action started.
The day began quite horribly. I was still wearing the Holter monitor, and it’s a good thing too, because I was extremely symptomatic. I have never had to try so hard in my life to get off the couch. A lot of it was because I hated the way I felt when I stood up, so I tried to avoid it. At one point I got up to get a snack and wound up having to sit down on the kitchen floor to eat it, because even sitting in a chair would have been a bad idea. The only way I was able to do anything that still had to get done was to drink a ton of water. Meanwhile, I got a message from my endocrinologist (on Christmas Eve, bless her) that the thyroid labs she had ordered the day before (TSH, free T3, and prolactin) were normal, so my thyroid is not causing this issue.
I had to keep the Holter monitor on until 3:30 pm. Taking it off and then finally being able to shower was glorious. I made it through my shower, but when I checked my heart rate on a monitor a full 25 minutes after having first stood up to take my shower, it was at 130. So I grabbed a 30 oz container of water and a bag of pretzels (gluten free, of course) and stuffed myself. Remarkably, it made me feel a lot better; another giant clue that I have some sort of orthostatic intolerance, as increasing sodium intake and hydration is basically the primary means of managing POTS. But more on that at another time.
My family (parents and brother) arrived in the evening and David got home from work shortly thereafter. Since it’s a tradition in David’s family to have homemade New England clam chowder on Christmas Eve, we had that for dinner. We spent the rest of the night catching up. Based on my response to my “salt loading,” David and I came up with a daily hydration plan to try to keep my symptoms at bay. First thing when I get up in the morning, I will drink a Gatorade to get some sodium into me. Then, after I’ve at some point consumed two 30 oz containers of water, another Gatorade, and so on.
I tried out the hydration plan when I got up Christmas morning. And by golly, it worked! I felt great for most of the day! David’s parents arrived around 11:30 am as David was finishing preparing Christmas dinner. It was delicious and enjoyed by all!
Following Christmas dinner, we did a video chat with my brother-in-law and sister-in-law, which was, as always, very entertaining! By 3 pm, it was time for presents! It took us two hours to get through everything with there being seven of us. It was a lot of fun because I think everyone got things they wanted. I got a nice haul of books I wanted and other stuff. Even the cats were enjoying their new valerian-filled pouches (except Aurora; she gave it a sniff and went back to sleep. Molly, meanwhile, was going nuts.) David’s parents headed home after we all spent some more time chatting, and the rest of us just basically hung around being lazy for the rest of the night. I suppose you could say it was technically a white Christmas, but all the snow was melting and there were patches of grass everywhere. All the rest of the snow melted today since we hit a record high of 64 degrees Fahrenheit (18 degrees Celsius.) But the snow will be back in a few days…
This weekend was a true test for me. I will be upfront and say both days completely depleted my spoons. Last night, as I was folding up tissue paper to store away and be used again, I suddenly started to feel off, so I had David get me a Gatorade, which was my second one of the day. I finally crashed to a stop around 7 pm, when I sat down on the couch and realized I could do nothing more functional that day. I was even too tired and unable to concentrate on anything that we didn’t even watch the Doctor Who Christmas special live. I’m so ashamed; it’s been a whole year since we had a new episode of Who. When midnight hit, I could no longer keep my eyes open, so I went to bed and didn’t get up until 11:30 am today. I’ve felt reasonably well today, despite being tachycardic when I got out of bed, but right now my head hurts and my throat is sore since we have a cold front coming through. So I really don’t feel well at the moment and it’s making me grumpy. It’s getting hard for me to think right now.
I also learned that I still have a long way to go as far as my health is concerned. Yes, I got through the weekend, but definitely at a price. I’m not the same as I was a year ago and I may never be again. I’m anxious about what happens next.
Anyway, this post is crap because I can’t think very well anymore. So I’m just going to stop now. Hope everyone had a great Christmas!
Yes, the above photo is real. I took it about two years ago while filling out the questionnaire for our respirator fit tests at work. I thought of it again today when I came across some questions that, while not necessarily odd, certainly made me pause and either shake my head or laugh. And then want to cry.
One thing my healthcare system does prior to many appointments is have you fill out a “Pre-Assessment Questionnaire.” Basically it asks you a bunch of questions on how your health has been doing in the past seven days and how it compares to the last time you saw this particular physician. I always do the assessments at home the day before my appointment because I don’t want there to be anything causing me to sit in the waiting room a second longer than I have to. Tomorrow I have my follow-up with Dr. Bain to see how I’m doing after the stent placement for my aneurysm.
Being a spoonie, some of these questions are just downright hilarious.
“It’s hard to find motivation to do anything at times like this. It’s hard to cope or to even see through the fog at all when your mind is so focused on something that it wants so much. Recover. Not just physically, but emotionally. Let things settle, and yes, that means let it all out. Grieve. This is a grieving process.” ~London Blogger Friend
London Blogger Friend and I don’t actually know each other. We just follow each other’s blogs. But we’ve developed an interesting relationship in that we somehow understand each other, even though we’re going through vastly different, yet somewhat similar, life battles at present. The comments we leave each other on blog posts are often long enough to be blog posts themselves. We’re somehow invested in each other and each other’s well being, despite the fact that I don’t even know her name, and I’m not sure if she knows mine.
She gave me the above advice recently regarding my ongoing struggle with infertility, which always becomes an open wound at the holidays, especially this year. Because this was supposed to be the year. Guaranteed. But because nothing good can happen to me in regards to health for the last four years…and I’m not sure how optimistic I am about next year either.