Muddling Through

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All in all, I’m not feeling too awful. I hadn’t had a great time sleeping, but once I’d figured out my feet haven’t been warm since… I can’t remember, it was time for some socks. I usually can’t sleep with socks on, but my feet liked this, and I slept like the proverbial log. I thought I should look online to see if I could find some slippers. Not an easy thing in August. I may stick with the socks with the trippy bottoms for now.

I was miserable last night. I had a couple of days where I had slept for 20 hours or so, and my meds were all screwed up. My knee kept popping out, my face and head hurt, my back hurt, I had cramps, I couldn’t remember anything, and I was lonely.  I was whining to my husband that I couldn’t get comfortable, and I was freezing. I wanted more pillows, and he got this happy look on his face. Apparently, he had purchased all these pillows and didn’t know what to do with them. So he immediately piled four pillows on me and produced three from under the bed. Such comfort!

My sheets are so gross and smelly. I’ve been so sick, husband hasn’t been able to get me out long enough to change them. This weekend. I am so excited! The kids’ bedding is changed every week, but I’m always asking him to leave it just one more week, we will be fine! Ugh.

I am so tired these days. The heat, the pain, not moving, the stress. It adds up. I’m usually better after my shots, but I haven’t heard from the clinic yet. I’m not eating as much, either. I get weighed on the weekend, usually, too.

Today it’s mostly my head, my back, and my pubic bone giving me trouble. My knees are acting up when I get up to use the washroom. I try to straighten them and they pop and crack, quite painfully, as you see the patella slide around, or it knocks sideways before sliding into place. God, it hurts.  I’m trying to rehydrate. Last night I had the worst case of dry mouth. It’s probably from all that time asleep. I should have taken in some water. Thunder storms and rain today. The big stick that pokes my wounds.

My boy is a grouchy today. His sister is being sweet to me. I was thinking just yesterday how I will missthem when school starts. Check that. Not the fighting. Sigh.

As long as my feet are warm, I’m sleepy. So it’s naptime. I’m nodding off.

Friday Evening, Before the Long Weekend

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My tee from the Ehlers Danlos Society Fundraiser is here! I think there is another one on now. Go to Booster.com. There is also a Zebra Strong campaign that looks interesting. I’m waiting for my shirt from that one.

There have been thunderstorms all week here, and the humidity has been awful. My bedroom is hot as hell.

My head pain has been bad this week. Still haven’t heard from this neurologist. I’m three weeks away from my Botox injections, so I will follow up with my pain guy. Unless I end up in the hospital, first. I’m having terrible abdominal pain. It feels cyst-like. I’m curled up in a ball again. Glad we have the new tv. Netflix is easier to watch. They also have True Stories of the ER, which I love. The acting is awful.

Eating is awful again. My digestive system is super slow. I have lunch, and now it’s 7:15 and I’m still not hungry. Another hour maybe. Really, my neck hurts so much, I can’t think about it at all. The nausea comes and goes. I’d rather go back to sleep. But that’s no life.

20170804_185439Please ignore the clutter, but that’s my makeup stash in the background. I bought this awesome gadget from Kikkerland. (Kikkerland.com) it’s a tablet holder, and I currently have my timer on it. It attaches with a clip, and has an adjustable arm. It’s only about $20. I bought this after video messaging with my cousin and finding it so difficult to hold my tablet. Now I can watch tv shows, Netflix, listen to podcasts, and it also takes fantastic photos.

Another neat gadget I found, also at Kikkerland, is a 20170804_185357phone holder. I was forever losing my phone, and this way I always know where it is, I can find it easily, read and reply easily, and it was only $15! I’m delighted. This also attaches with a clip and has an adjustable arm.  Don’t laugh at my BlackBerry. Husband is in IT security and insisted on BlackBerry. Also, mess. As you can see, I use the IKEA metal rolly cart for a bedside table, and it’s amazing!

This weekend I plan to do some serious rest and relaxation. My XL elbow brace arrived, I need to do some serious skincare, my skin is in need of masking, I need some extra rest, and I have extra correspondence I need to catch up on.

I’m trying to get organized in many aspects of my life, however I need some assistance. Getting this assistance is almost as tough as doing it on my own.  Sigh.

 

Onwards. ❤

 

 

Growing Old Together

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Yesterday turned out to be quite hellacious for me, pain-wise. We’ve been having a lot of rain and intense storms, as has much of North America, I think? I’m very sorry, I can barely concentrate on what goes on in this room. It’s supposed to be a mixed bag this summer, from what I understand. Hot, cold, rainy, all over the place.

Back to yesterday, my treatment is coming up either Tuesday or the Tuesday after, my husband isn’t certain. Which means the last injections are wearing off a bit, it doesn’t always happen, but usually. My bet is on this Tuesday, since the low-level headache started on Sunday of last week. It’s usually the first sign my treatment is coming up. It’s not that bad, it’s like a mosquito buzzing, annoying, but livable.

Where were we? Yesterday. Thunderstorms were gathering all day, and I could feel that tension in the back of my head. It was not at all pleasant, and began to creep down my neck. It felt like I had something out-of-place and it was pressing? It hurt so much.

giphy31By 9:00 my husband came to bed, and I was really hurting. I was trying not to move my neck, and it was tough to think. I had my neck pillow holding me steady. It was like something was pressing on something leading to my brain, or, like Homer Simpson, I had a crayon up my nose.

We chatted for a bit, snuggling, and he tried to boop my nose, but missed by half an inch. He’s had problems with glaucoma, surgery last November. He closed his eye and tried for the boop again. He got it! It’s sobering to realize how much vision he’s lost, but we did have a laugh. We are quite the pair. For a good few minutes last night, our bedroom sounded like “oof” “ow” “ouch” “aaagh” “dang” “crud” “ugh” “ow”! How romantic! 😄

We did get some kissy-face in, nice in a thunderstorm. But it’s tough to be all romantic with your partner when your neck is stiff and your hands lock up into mannequin hands.

This was strange, because it’s never been this bad before. I do have problems with my hands. They get stiff and sore, and I haven’t been bracing them. I also haven’t been resting them as much as I should, doing all this typing. I have been feeling the stiffness quite a lot lately. I guess last night, with the rain and thunderstorm starting at 3:00 in the afternoon, just when the kids get out from school, naturally, and raining off and on until after midnight had something to do with it.

Of course, my daughter did not wear her new rain jacket and came home drenched, but my son did wear his! Bravo!

Of course my husband was amused by my predicament, and I pretended to run my mannequin hands through his hair. There was no point in doing movie banter, he hasn’t seen any movies. I pretended to run my mannequin hands over his face, and they were fairly numb at this point, and he was laughing so hard I was afraid we’d wake the kids. Besides, my stomach was hurting.

So he went to sleep, and I stayed up listening to the storm for a while longer while trying to relax. I wanted to see if relaxation would help whatever was wrong with my neck. Finally, I decided sleep was a better choice, and bailed.

This morning finds my neck much more flexible with little pain, but you can feel a background warning. I will keep the Voltaren handy! And ensure I keep relaxed. Deep breaths. I should check the weather…

Have a fantastic day Zebra friends! 😘