Revelations

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I’ve written so many editions of this blog where I have been feeling low, it is great to be feeling good for a change.

I have settled into a comfortable routine. I am up at 6 am, available for the kids as they get ready for school. I putter around until around noon. I am in bed, but I fold the blankets and put them aside so I can move around. I lie down as I need to, sometimes it’s ten minutes here and there, sometimes it’s a whole hour at a time. Between six and nine, I am definitely available for my kids, and they talk to me a lot! Once they are into their day, I am more relaxed.

After my afternoon medicine, I nap. Sometimes it’s right until 6:00 pm.  I am around for my family from when I get up (today it was 4:30) until the kids go to bed, usually by 9:00 (their choice) and then my husband and I hang out until the Sleep Monster comes for us. 10?

So, that takes care of getting enough sleep.

Other things I am focusing on:

  • Getting proper nutrition
  • I’ve been making sure I eat good food and don’t worry about weight gain
  •  Focusing on positive shows and experiences
  • Because I am stuck watching tv so much, I focus on more positive shows and not negative ones
  • Lowering stress
  • I have found some good apps to help me keep track of things, and I’m learning not to overload myself
  • Enjoying hobbies
  • Playing with makeup and crappy crafts are more important than they appear. They really help me relax. Organizing things is my kind of fun. 

So far, the results have been good. I am no longer constantly berating myself for not accomplishing more, and I’m having fun!  I still have body pain, yet it is discernable from my mood. In other words, I can be happy and in a good mood and have an aching back, and it’s been a long time since I could say that.

Adjusting

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This has been a tough week. I’m trying so hard to stay positive and happy, but I just feel so awful all the time. I don’t have much time where I can sit up before I need to lie down again to relieve the symptoms. I did end up sleeping from Friday evening -our whole family was in bed by 9 on Friday, until dinnertime. And then I slept this morning until 11. I hope it helps. My back is hurting like crazy, but it is probably related to the leaky spinal fluid.

I think I’m so upset because I am afraid. I am afraid things won’t get any better and I will be stuck not only in pain, but even more useless.  I am trying to not dwell on this, but I need to get a certain amount out of my system. I am trying to appreciate the benefits of the relaxed life. There is the grand possibility I could be fine. God, I hope so.

I get very lonely. I don’t have much capacity to reach out or to be a friend right now. Online is so tough, I am often misconstrued, rightly so, I am so tired or not thinking about how my words are interpreted. I don’t get back to people, I have to run sometimes if I have to vomit or stuff. It isn’t ideal. Phone sometimes works, but my husband will work from home, and no phone for me! 😆 or my face hurts so much. But that is a possibility. 😊

I’m trying to watch funny and positive programs on tv. There are so many things on tv I missed out on! Friends was so Great! Arrested Development was amazing! Bojack Horseman is hard for me to follow, and I need to decide on what’s next. I’m enjoying this.

I started reading again. Reading was tough for a while. I’m not certain if I was too jumpy or if I can only concentrate on short stories, but I just finished an excellent book. I will tell you when I can get the title. I can’t move just now. 😜

There are plans to change my medications, consult with this doctor,  that doctor. But this all takes time. I am trying so hard to be patient. But I’m uncomfortable.

But when I look forward to my future, do I have 35 years left? 83 is a ripe old age (okay, we generally live longer in my family, but please) what am I going to accomplish in this time? This disease has already derailed my (sad) career. I cannot start anything in this condition. This blog is a major effort (of love!) Thank God I was able to have the kids I was told I would never be able to have or I’d feel like I had passed through this earth leaving nothing (ymmv). Maybe I’m just having an existential crisis all on its own. I’m prone to those. I have way too much time to think. My sister told me to “just don’t think about it” which is brilliant advice, but yeah, when you’re lying here in pain, your brain goes to dark places. It sucks. I’m working on it.

I was thinking about my friend who had told me early in the year that I needed a new doctor and the way they were going to fix me was without pills. He was right, in a way. But I don’t think I will be making the miracle recovery he expects. It’s not q-ray bracelet technology. If the blood patch works first time (unlikely) I need physio of between 3 and 5 years to be up and walking to where I would be enjoying time with my family. Not to mention getting on proper medication, etc etc.

I will be so much happier when I can at least lie down and not be hurting, you know? It’s bad.

Sending my love!

 

So Grouchy

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I have been thinking about posting all week, I have just been so grouchy, I didn’t think it wise. Everything seems to be irritating me. I don’t like this at all. Isn’t it just like me to be irritated about being irritated? 😆

My head is sore. It hurts almost constantly. It’s bearable when I am lying down. My neck has this sharp kink where it feels as if something is sharply out of place.

I have about three to maybe four hours in the morning, where, if I’m very careful, I can sit up. I need to lie down periodically, but I can get a few things done. I can’t screw around, and when it’s time to quit, if I delay I may have to rest tomorrow, too. It’s tough, because I’m easily distracted and really clumsy.

And oh, so tired. I’m thinking it was the three hour appointment, but we are ten days past that now, I should have my strength back. But I can’t accomplish anything much.

I’m reorganizing everything I can get my hands on, which does tell how stressed I actually am.

I am trying to learn to relax, although I have no experience in it. Doctors orders. I’m also trying to watch positive shows, humour, and be generally happy. It’s helping. I mean, I know I am irrationally irritable. I’m trying to keep it to myself and not inflict it on anyone.

This pain. I do occasionally have better times. Resting is my lesson.

On the plus side, I really enjoyed Friends and Arrested Development. I was working so much when they were on, I didn’t see them. I’m not certain what’s next… Archer?

Hope you had a Happy Valentine’s day!

Dizziness

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I am so freaking dizzy! I can’t close my eyes anymore, I just can’t. I should be sleeping.

I fell in the bath today. I was crouching to get in, and I saw blackness, then splash! And then my back and shoulder on the left side started hurting. Which is annoying, because my back was doing pretty all right, considering I should have my shots tomorrow, Tuesday, if this is Monday, already. It’s 2:30 am.

I actually feel as if I am getting a period. This is weird. I have a Mirena, have had no problems, just treated for a yeast infection, have incredibly sore boobs, cramps, sore back, and twinges. Definitely not pregnant. I guess I have to trek to the doc. I wonder if weight loss has something to do with it. I’ve never used Mirena at this weight. Does it need time to adjust?

This dizziness is something else. I even THINK about looking up? Makes me sick. I hate people who post photos from planes or videos of skydiving? I start shaking. I’m tearing up just thinking about it.  Or from space? I want to vomit. I don’t know how I’m going to get through tomorrow (no, wait. We decided it was today, right?) today. Someone is going to want me to look up at something…

I just tried to roll on my back facing up and I couldn’t. It makes the room spin. It’s so weird.

I was thinking again the other day… so dangerous, 😄 a couple of appointments ago I was trying to get a concept across to my mmj doctor. I was asking her about a stronger dose or another strain, although my distributor doesn’t do that, that would help me… and I couldn’t quite put my finger on the concept.

Relax.

Relax my muscles an perhaps let some of the tension in my body go. You cannot even fathom how rigid I hold my body. Even when I’m relaxing. I can’t drink, we can’t get massages, every time I do relax I get a fucking migraine, I can’t eat anything good, hot bath? How long does that last? I’m cooking to death in this room already, no heat for me. I hate cold, I snuggle up and watch comedians on Netflix. I’m still tense as fuck.

I can’t close my eyes, it makes me dizzy.

I’ve been trying for an hour to sleep.

Anyway, now I target each part of my body starting from the top or bottom, and relax each bit. It’s an exercise. Deep breathing, all that jazz.

My little corner of the universe is becoming quite becoming. I’m finding a lot of joy here. My makeup stash to my skincare stash, (PS, if you spend more than $100 on Korean skincare and masks, it is too much, and you will spend the next six years giving it to everyone who walks by. ) it’s all becoming accessible and organized and joyful. My clothes are slowly getting organized… that’s my daughter’s project, though, and she is taking forever!

Anyway, I need to try for 3 hours, and my elbow hurts! 😢

💜

Netflix and Nausea

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My Zebra Strong tee arrived! Booster.com helps charities with fundraising, so they are a cool place to check out.

The past couple of days have been interesting. Yesterday morning I accomplished quite a bit. I cleaned a bit of my bed area and my outstanding computer files. I’m transitioning from a Yahoo address to a gmail, so I did some of that.

I napped all afternoon.

I’ve been watching a lot of Netflix. Mostly Documentaries, interspersed with Embarrassing Bodies, which mostly involves sexually harassing the male doctor, but I’m alone in my room, he can’t hear. ☺

My head hurts. I couldn’t keep down breakfast. I’m almost used to this pain now.

My memory gets really lousy as the day goes on. It’s awful. I did go on a journal spending spree and got some nice ones!

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There are some dotted pens. They are cute! I bought a proper Address Book. I won’t have to fire up the computer every time I need an address! There were three plain journals, and two holographic/iridescent journals. I’m in love with holographic or iridescent products. ❤

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Pretty! And, of course, you can see the reflection of the ring light.

It’s been thunderstorms like crazy here! 😮

I’m incredibly bored, so I’ve made Amazon my bitch, and it’s giving my husband heart palpitations. I’m terrible, I can never do just one thing at a time. The tv is on, but I have to be futzing on my tablet or organizing a drawer or writing a list… I need to Zen more. I should slow it down.

Although I felt awful today, I’m feeling better than I was this morning. My back doesn’t hurt as much, my head is okay. I might try a quick look.

It’s amazing how your pain can change. I know I’m delicate today, though. My abdomen is threatening cramps if I’m not careful. Is that the Endometriosis acting up?

Today will be quiet, with some masking, skincare, Netflix, naps, photos, and maybe a makeup look if I can.

Moving slowly, though. No need to rush!

Hope you have a great weekend!

 

 

A Delicate Matter

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Firstly, I am in a slightly better position as to where my pain is. I’m more stable. The area is still very tender, and I’m trying to be delicate with it. I’m as medicated as I can be, and am trying to relax.

Another piece of good news is my son is on his way home from his school trip. I’m so pleased he did it, as there was some questions about his anxiety keeping him home.

Part of relaxing, I’m finding, is staying away from social media. This is unfortunate, as I don’t have many other ways to socialize. I made many new friends after Trump was elected President in the United States, many of us lefties banded together, they let me play from Canada, and I was very happy to do so. However, I’m finding many people are not at all sensitive to the needs or lifestyle of someone with chronic pain or with a chronic illness, and it’s been a huge adjustment. Not just with new friends, either.

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This week, especially, with the lack of sleep and needing to take extra medication has really underlined this phenomenon to me. I mean, I know I’m a sensitive person, but there’s a point. I had posted something and worded it awkwardly, and instead of saying I worded it awkwardly, my friend made fun of it, like I knew, or had done it on purpose. I don’t mind the teasing, but when I’ve goofed, because I’ve been drugged and sleep deprived, don’t think I’m going to ‘get’ something. It’s almost like expecting the parents of a newborn to pick up on subtleties. Not going to work. I constantly remind myself to be flattered to be mistaken for a normal, but I get frustrated.

I had another person go off on me because I used a word she didn’t like. Often, I find, people will hear I’m disabled and hear ‘captive audience’ or ‘someone always available’ those actually in this situation know there is so much we can do, if we want to, or have the spoons! Unfortunately, I find I often get imbued with many attributes by people I’m newly meeting, which I don’t possess and are then punished when I turn out to be me.

I am particularly sensitive to these issues, I suppose, because I work so hard to express myself. It’s not something I take lightly, and I actually care about people, so when I am shoved aside accused of being uncaring based on a poor word choice after a lengthy disclaimer about being tired and on heavy meds but still trying to be there… it’s frustrating. Do people hear disability, think deformity and don’t even consider pain?

I suppose it’s just hard right now. I have a few close friends,  but no one nearby. I have friends on social media, but it seems many of them are leaving in droves as I can’t be political enough or posting enough for them. I am getting damn sick of the sexual harassment. It’s not frequent, but it’s traumatizing. Especially when you feel awful.

I didn’t mean to be such a downer today. I just feel a bit lost. I’m not sad or angry, just pensive.

Hope you’re having a great day, Zebra friends! 😘