Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Monday Dawns

giphy4

I spent much of this past weekend crying in pain, but with some rest, slow massage, gentle movement, medication, and patience… I’m feeling slightly better. At least I’m not longer getting the spins every time I sit up. I even soaked in the bath for a bit! Washed my hair for the first time in two weeks! Well, my husband did. He then spent a half hour gently combing the tangles out. He’s so good to me. 💜

My head hurts right where I hit it all those years ago, where the fracture is. Holding it still is the most comfortable,  but I’m in danger of getting stiff, which makes things worse. My short term memory is still awful, and I can feel the pain creeping up. Lying on my side seems to help, so I suppose I will do that for a bit, see if it works.

When I woke up I felt fully okay for almost ten minutes. I was so excited.  Now I’m disappointed. I can feel the symptoms returning. The nausea, the dizziness. I’m so frustrated. I don’t want to bother anyone, but I can’t survive a month and a day until my appointment. Wait. That’s wrong. I can. I will. I just will be miserable.

To top it off, I gained a pound last week because I wasn’t eating, and my metabolism shut down. Grrr.

What would you do if you were me, Zebras? 🤔

 

UPDATE: an hour later, I feel worse, and joining the party my right lower abdomen feels like it’s harbouring a rabid squirrel. I did consider calling an ambulance, but it subsided. I can’t figure out why such acute pain all of a sudden. I’ve vaped, trying to be relaxed, seems to help, try to nap. See what that does.

 

Friday Morning

giphy2

I did manage to get a Beauty blog post up for today. I’m pretty pleased with myself. I took the photos when I had a pain respite one day ( I’m having trouble remembering what day it is) and wrote the copy slowly yesterday morning. I slept from 2:00 PM until 9:00, took my medication, looked at my email and futzed around until 11:00 PM.  Then slept until 6:00 this morning.

This morning so far isn’t too bad. My neck and jaw is pretty sore. The back of my head hurts, and I have a headache starting to wrap around my head. I’m so nauseated and dizzy, too. I have wicked bedspins, it’s like being in a standing MRI, or when I had that barium swallow. Instead of just spinning flat, I actually feel like I spin top ways, then sideways. It’s awful. Better lying down, best on my side. I’m probably sleeping so much just to be away from it.

Things are definitely worse when I sit or stand, and get progressively worse the longer I am upright. 

I do feel much better, though. We are keeping an eye on things, and I am not having as much head pain as I was having. My memory and vision are both not really good either, just a bit hazy, but not alarming. That kind of just woke up feeling.

We’re pretty sure I’m not going to die from this, so we will evaluate on Sunday whether we go to the Emergency Room for evaluation. If I keep improving, then we will just try to be low-key and calm for a few weeks. Otherwise we go.

I took some daytime cold medicine this morning, so maybe this is what’s helping.

I have had so much good support through this. When my brain returns, I will thank you properly and link a great article.

Also, two Facebook friends have admitted to reading my adventures. That matters so much to me, you don’t even know. Sometimes I feel I’m passing through this life unnoticed.

Am I having a mid-life crisis on top of everything? 😁

I’ve found, as an adult, maybe I haven’t been so great at choosing friends. The ones I’ve clung to have kicked me, and the ones I’ve dismissed have shown themselves to be the gems. I’m probably not in a good space and haven’t been for a long time. I don’t think it’s something I can fix at the moment. It’s just a musing.

I need to remember I’m in survival mode at the moment and act accordingly.

I have to put things in perspective. Be selfish. Be okay with being selfish. That may be the toughest part.

I was thinking about it. So what if people think I’m an asshole? For the first time in a long time, I like me. I don’t have the time and energy to explain myself to people who don’t understand or listen anyway. I’ve been exhausting myself trying to be wonderful to people who don’t appreciate it anyway. I’m tired. I’m tired of being nice. I’m tired of sending out care packages and getting a half-hearted ‘thanks’. I’m not a grandmother!

Anyway… rant over. I share a birthday with Dennis Miller. It comes naturally. 😂

OK,  Zebra peeps! I’m going to lie really still, because I just moved my neck and it hurts a lot now. Have a great day!

Not so Bad?

I didn’t really sleep last night, but lay curled in a ball on my side. Aside from some urgent puking at around 3 am, things seemed to go okay. Husband leaped out of bed at the clank of the bucket and grabbed the Gravol. I’m still nauseated as hell, and I have the bed spins when I lay on my back.

Husband whispered he would take me to the ER this morning as soon as he got everything settled, but of course I’m feeling better now, although my stomach is still lurching. I wonder if it’s just time or if it was a migraine. If it’s bad again, I’m going. It seems to be worse if anything touches the back of my head, or if I’m not laying on my side.

I guess we shall see what the next few hours brings.

 

On another note, I’ve accepted that I’m too sensitive for social media right now. Really, I’m too sensitive for more than one person at a time right now. I’m not going to go all dramatic and post some goodbye notices, but I’m just acknowledging that it’s not you, it’s me. And that’s okay.

Facebook: where everyone is sure you’re an asshole, and they can’t wait to prove it to you.

Okay, popped some Benadryl. Pray for me.

I need this to be done. My daughter has a dance performance tonight, it’s going to run long and late. My husband should go, and I need to be here with our 13-year-old. He won’t last (autism).

My eyes aren’t right. They aren’t focusing. It’s like it’s foggy, or my glasses are steamed up a bit. Or my eye is lagging. My neck is really sore. I’m so worn out. Today will be quiet. I hope it helps.

Stay flexible my Zebra pals. And hang on, here go the bed spins again! 😄

 

Some Thoughts Before My Head Implodes

giphy1

I do have some good news! The EDS clinic called yesterday. They wanted my GP’s information so he can be contacted for more information. At least they’ve heard of me! My husband called back, as I didn’t get the call.

My head wasn’t as bad this morning when I woke up, but the pain progressed as time has. It’s been two and a half hours and I can feel it settling in nicely. My husband did get a response from my doctor, and apparently whoever answered the call said there is no way it could be chiari malformation because it would have shown up on my barium swallow (?) I really wish he hadn’t said anything about my fears. I also have a skull fracture at the back of my head that may be affecting things. It’s been raining here all week, is sunny today, and is supposed to rain again tomorrow to Sunday. I thought that had something to do with it, but I’m hurting again today, so that doesn’t seem right.

I thought I’d blog early before the emotions and pain get too tangled.

I know I sound like an asshole much of the time. You’re getting real, unvarnished here. What I usually hide. What I find so challenging is, I should be falling back on the friendships I made years ago. But I didn’t make those. I’ve explained my weird adulthood before. Moving across the country, my ex-husband alienating any friends I did have, working too hard and making poor friend choices led to those relationships falling apart. Finding a group as an adult and being drummed out because I was accused of being a drug abuser (I wasn’t, someone decided an increased prescription dose = me freely taking as many pills as I want. I don’t talk quite as much as I used to, but that was a side effect of that stupid medication as well.) A couple of long – term friends, but they are spoonie, too. We rarely see each other or even talk. But they are really good people.

Some of the friends I did have don’t know what to do with me now that I can’t go out. They don’t even invite me over when they have movie nights at home. I could do those. I don’t even hear from them. Not even casual emails. It’s as if I ceased to exist.

My Mom tries so hard, bless her, but I need a Mom.

My husband is so busy looking after me, I rarely see him.

I really try to be a fun, happy person most of the time. I wonder if these episodes are just too intense for some people. It’s just right now I need friends most of all, just knowing someone cares means a lot to me. I’m probably looking in the wrong place or asking for the wrong things.

I just find so many are suspicious or angry or defensive, you cannot approach anyone. It’s harsh out there, and in all honesty, I’m getting tired. I’m getting tired of having my head bitten off when I ask for help. I’m tired of having it bitten off when I offer help.

A friend of mine, a friend I went to elementary school with, is a nurse. She is one of the most caring people I know. She wrote on her Facebook wall “I must be the first person in the history of the world to cancel a doctor appointment because of not feeling well.” Now, I don’t demand everyone think about me before they post something, but that hurt, it was so tone deaf and out of character. I mean, I’ll live, but…

Okay, the head is hurting time to vape. Nausea is rising.

Have a great day, Zebras! 😘

Scary Pain

My neck is so painful right now. I have my neck pillow on, it’s worse if it’s off. If I move, the nausea gets so much worse. Left is worse. The pain comes around my head like a crown. My teeth are even numb. It’s slightly better if I click something at the top of my spine into place. Like, near the base of my skull? I’ve been trying to pretend I’m normal, but it’s affecting my short-term memory, and I’m scared by the intensity of the pain and nausea. I haven’t taken migraine medicine yet, because it’s not like any I’ve had before, and is on both sides, would it work?

I’ve tried Tylenol. My husband told  me to. He had a reason,

I can’t see my pain guy for 5 weeks. I can’t live like this that long. I think we should call him. Trying to get hold of my husband.

This is awful.  I don’t want this.

Can I have some fun disease?