New Attitude

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I’m not gonna lie, the death of Chris Cornell has hit me hard. Aside from the usual fangirling, the man was only 5 years older than I am.  His voice is just something that moves me like nothing else. I’ve been randomly bursting into tears. But it really has brought about some changes and reflection.

Honestly, everyone, absolutely everyone has baggage we can’t

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Chris Cornell 

see. So why is this world becoming so very hostile? I truly don’t understand, but I am not about to be trampled any longer.

All my life I’ve tried so hard to be wonderful, to be accepted. To have friends. To be loved and nice and well thought of. What has it gotten me? Some truly outrageous behaviour by some people. 

  • A person I went to  high school with lectured me in front of a group of people at my 20 year reunion about what a stupid mistake it had been to marry my ex-husband.
  • My mother in law tried to convince my husband to take our two kids and leave me because I was sick. She was convinced he could find someone ‘well’ to look after him, because that’s what he deserves.
  • She also refused to have my name put on the car insurance for the car they essentially gave us because she didn’t want me driving it for ‘fun’. I wanted to be able to take the kids to hospital if need be. Husband threatened to return the car. I never drove it anyway. I’ve given up driving because of my medication.
  • My ex husband offered his business associates the opportunity to have sex with me in lieu of the money he owed them. I found this out years later. I was not complicit.
  • I chose a certain woman to be matron of honour at my wedding, she told me many years on another woman was so bitter about not being chosen she complained the whole time. Why did I have to know? I was friends with the complainer for another ten years before we had an ugly breakup where she accidently sent me an email saying ugly things about me.

So, my point is, if I’m getting this treatment after trying my hardest, why am I trying so hard? This is, of course, not an exhaustive list. I don’t know why I inspire such hatred sometimes. Such loathing. My good friend’s husband still hates me 20 years after I had to drop out of their wedding. I don’t think he gets that my then husband took every dime I was making and was alienating my relatives. I couldn’t go to them. I still cry at night over that.  Why do people seem to think I’m unaware of the stupid things I’ve done? Or maybe there was good reason?

I’m sliding into a mode where I can only do for me now. I wake up. I coffee up. Med up. Breakfast. Vape. Get some makeup. Why do I makeup? Internet likes? No. But it’s fun to show my work. I like to zen out. I can relax. Be creative. And I can touch a part of myself that doesn’t hurt. My face. It takes two sometimes three hours to get my face on and photographed. Not because I’m slow, but because I need to rest so much. I lie down and get my pressure regulated or rest my hands. Then I nap. Dinner, visit with husband, bed. Meds in there, interspersed. My kids visit. They’re pretty independent. They need me, though. Don’t get me wrong.

Frankly, the way I’m feeling, I could really sleep all day. Every day. But really, that’s no fun at all.

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EDS Awareness Look

My head and neck are still bothering me, and are really ramping up, in fact. Yesterday was bad. I did a makeup look for EDS awareness month, and I was so tired after. I wanted to post to the blog, but I was going to have a quick nap. Four hours. Probably best that I didn’t. It would have been angry.

I have been wracking my mind. If your relationships are all crap, you should really look at the common denominator. That’s me. I need to change something. Everyone can’t be a jerk, right?

I do have some very loyal friends, however. Don’t think my life is bleak and terrible. Oddly enough, they almost all seem to be nurses or have chronic illnesses themselves. I am constantly amazed at my husband.

I often wonder: do I not share enough? Am I not upfront enough? Am I too retiring? Am I too pushy?

But you know what? I can’t anymore. I just need to live. I will continue to be kind, as always. Respectful, of course. But I can’t work so hard anymore. I need to focus on myself. I need to focus on me. I’m project #1 right now. Family is second. I used to worry there would be nobody to attend my funeral. I can’t anymore. I can’t worry about my afterlife when I’m not even living this one. Such as it is. It’s mine.

I need to build it.

Have a great day, fellow Zebras! 😘

Goals

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I had lofty intentions for this blog, but it seems to have devolved lately into a daily diary of my exploits. I could have said pain – but that’s just melodramatic. 😄 it’s kind of true, though.  I really do document my day to day pain at this point. I am in Survival mode, essentially.

…I started writing several hours ago. I’ve been distracted, had a nap, fielded a call from my daughter’s art teacher, (she suffers from anxiety, and has had spotty attendance this past month. He was concerned, understands, thinks she’s awesome. She endeavoured to turn in an assignment today, even though she was struggling).

As I was saying, I feel like I’m still in survival mode. I’ve had to shed most of my activities not actively related to living. This morning I felt as if I had taken a step out of the ooze. It’s great when I can add things back, like playing with makeup. Geez. Putting on makeup is something most people take for granted. For me, playing can take two or three hours for a simple face. A face most people would put on for date night. It takes me so long because I rest between steps, lie down, have to stretch.

I had to tell my mom I needed some space for a bit. I feel so responsible to her, but if I don’t get to her for a bit (Dad too, of course) I feel guilty, but I need to strip my life for a bit again. Just the basics. Making sure I get enough sleep, eating properly, taking my medicine and vitamins, bathing – which can be tough. I need to be for my family right now.

It looks like my husband needs to go for more consultation on his eye. He went to the doctor on Saturday, and the pressure was up in his left eye. The doctor wants him to see another specialist. Soon. I’m concerned. He was prescribed more drops, fully researched, for the one eye. Within two days his eye was red and angry again.

It’s kind of stressful over here. I suppose I shouldn’t be surprised if I am feeling exhausted and out of sorts. I’m trying to be responsive to and supportive of my friends, but it’s rather like I’m a flailing drunk trying to make sense of it all. My head pain has increased again, which isn’t too surprising, since I haven’t been looking after myself.

Going forward, I pledge to be gentler to myself. I will practice good self-care and remember I cannot be my best self if I am out of sorts.

My family needs me.

Besides, what ever turns out the way we expect it to, anyway?

Thanks for being here, Zebra friends! 😘

Self-care, it’s Tough!

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I was chatting with my friend Tina who blogs at Avon365blog, (go check her out!) And I had mentioned how hard I find self-care. I grew up with the attitude that self-care was for the weak, and we can sleep when we’re dead.

Beginning at age 12, my parents gave me a meager allowance, considering, I think it was $25 per month for clothing, and then maybe another $20 a week for everything else. They paid for my food and shelter, and I paid for everything else. EVERYTHING. Although I usually snagged my mom’s menstrual supplies. Now this sounds like a lot of money, especially in the 80s, but I lived in Canada. I had to buy winter boots and coats. I had to buy birthday gifts for friends. I had to pay school fees for yearbooks, etc. So….I worked. I also had endometriosis, and would collapse in pain each month. And I had EDS. My aches and pains were just growing pains. But I kept on. I stayed in school and worked two nights a week and weekends. Kept my A grades. I ignored the pain. I never thought about it. I couldn’t.

This isn’t “oh! I had a terrible life!” This is just how it was.

I’m used to being busy. Sitting still is tough. Watching TV? Why not organize a drawer? Tidy up? Fold laundry?

Sometimes  wonder if that’s why the Universe/God/Flying Spaghetti Monster finally made me slow down and listen. I’m learning how to do this. When I saw the physiotherapist a year and a half ago, while he was talking to me, he was drawing letters on my leg. I had no idea. I was really out of touch with my body. I’m slightly better now. Losing weight has helped. I want to be more in touch now, I’m not in self loathing mode.

Today, my back is really sore. I had fun playing makeup yesterday! It’s fun and relaxing. I’m glad I still can do something. The back of my head is quite sore today, and rain is in the forecast. The weather definitely has something to do with this. Cluster migraines?

My mom asked me a strange question the other day. She asked me if (I presume she was talking about EDS) was progressive. I hadn’t thought about that perception. Whether I just have a series of flares or if my health actually deteriorates. I had thought it was obvious, as I was formerly ‘normal’ (average), but upon further reflection, really it isn’t.  I have gone from working my ass off to bedridden, but there is also the consideration of breakdown of collagen and tissue. For example, my knees – particularly the right, has a breakdown of the meniscus so dramatic that it is ‘gone’. When I walk it is bone on bone and the patella is so loose I walk like a cowboy. My left is also on its way. My wrists and fingers are sore and achy, likely insane carpal tunnel. I’m trying to get in with specialists to actually treat this, but the doctors retire, someone screws something up, this is three years of nonsense. My 100 lbs weight loss has not relieved any pain, in fact, overall, my pain has increased. I finally found a gastroenterologist who had a clue what was wrong with me, and he retired.

So, yeah, I feel it is progressive, in that as structures break down in your body – the collagen containing ones… I guess that’s most of them. Your body is going to start to deteriorate. My elbows are going the way of my knees. My fingers ache all the time. My tablet isn’t always my happy place.

Okay, going to try to play! Have a fun day, Zebra friends! 😘

Friday Morning

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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!

Unnngh

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I’m so stressed. Yet it’s mostly self inflicted. I mean, I think the pressure is self inflicted.  Ì ended up sleeping a lot again today. I couldn’t stay awake, and my back and abdomen were just screaming in pain. I must have overdid it yesterday. It’s so irritating that I put on makeup for 20 minutes and it caused me to have to sleep for the day. I’m at a loss as to how to cope because there is just no help available until my doctor appointments unless I go to the hospital. Honestly, what can they do for me? I mean, besides berate me for wasting taxpayers money. Never mind the people going in for sore throats because their doctors office is closed.

My husband is working hours and hours, I haven’t seen him in days. I miss him. I also have to have an uncomfortable conversation with a person because they are doing things that are crossing boundaries and I’m not happy. I’m too exhausted to deal with this. I just want everybody to leave me alone, except the people I don’t want to leave me alone. 😁 yeah, it’s just as bad in here.

I don’t want to sleep my life away.

Hope you’re having a great evening, Zebras! 😘

 

Just Keep Swimming

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I’ve spent the last five days or so sleeping for at least half the day, and I’m still exhausted. I just don’t have the strength nor energy to do many of the things I want to do. I really have to think about what I want to accomplish and where I can spend my energy. If a conversation runs over, so long bath! My daughter had a panic attack this morning and I am pretty much done for.

My husband has this idea in his head that I’m bored. Nothing could be further from the truth! I have lists of things I want to do! I have makeup looks I want to do, books unread and stacked, waiting, crochet projects, movies to be watched, blog posts to write, friends to chat with! As it is, I am busy from morning until night when I have the energy. I can’t seem to convince him, and it makes me so sad.

My neck is so bothersome I just can’t take it. I move wrong and I have intense pain. I don’t know what to do about it. I’m waiting for my doctor appointment in six weeks. Hell, I have pain when I don’t move. I’ve considered going to the hospital, but really, what can they do? My abdomen is also giving me incredible pain. I’ve run out of the higher THC mmj my doc prescribed. I only vaped extra once, so that doesn’t work. I ordered yesterday, so yay.

Good news, I broke 200 lbs! I’m 198 now. I don’t really know how to stop this. I guess I will stop when I’m there? I’m eating what I can, not trying so hard.

Going to try a nap for a couple hours, then try and put a face together, because it’s fun! 😀

Hope you’re having a good day, Zebras!

Exhaustion Takes Over

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I have been too tired for words lately. I feel like the exhaustion from my Botox treatments have passed, but I am the kind of tired from not sitting around doing nothing long enough or not sleeping well enough. My CPAP mask has been acting up, I just realized the other night I was spending an awful lot of time fiddling with it while I was supposed to be sleeping. My husband ordered a new one and it arrived today.

This month has been lousy with new makeup releases. I’ve been playing with makeup for so many days! My hands are sore, and I took  some photos today and noticed my eye was drooping in the photo, I was so tired. Yesterday, most of my photos were lousy. It’s hard to look good in a photo when you’re tired and sore. It’s possible, but, it doesn’t happen often.

I think the best thing is for me to put myself on vacation until Monday, April 24. If I feel inspired, I may post, but I’m hoping to sleep, rest my hands and wash my makeup brushes and rejuvenate. I have posts brewing in my head, but they will wait.

I’m getting jumpy. I should go.

Have a good weekend, my Zebra friends! 😘