Good News! I’m alive!

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Well, I suppose that depends on your perspective, but I’m happy I’m starting to feel human again. 🤣 I believe sleeping so much yesterday helped a lot. Usually sleeping so much doesn’t do much to tackle the exhaustion. Things are different when we are dealing with the flu.

It’s funny to me it takes so long to figure out when I have a flu bug or something. I get to feeling worse and worse, and my brain gets less able to figure out what is going on. Being nauseated and tired all the time is nothing new. Dizziness is standard. Flare-up happen. Headaches are constant. At least now I feel like I have one flu instead of two. And why do I get sores on my tongue every time I get sick now? Do not like. (When my daughter was a baby she used to say “Do not like it -push” 😂 she’s so funny).

Two weeks to neurologist appointment. I’m hanging in there. I’m hanging a lot on this. I know this is very dangerous, but it’s all I’ve got.

I am going to shop for some supplies. I am going to look for some aromatherapy supplies. I still have horrific menstrual cramps. Year’s ago a combination of bergamot and ylang ylang in oil massaged on my abdomen used to help. If you try this, it is not safe for pregnant women, because it can cause uterine cramping. I want to find some support pillows, and something to help me apply lotion when my husband and chief lotion-spreader isnt around.  Or is sleeping. 😊

I have new boxes to get organized, so I’m going to do just a tiny bit of that while I have the spoons and need to lie down again. Ten minutes?  I love making my nest cozy. Then I’m going to watch episode 2 of AHS:Cult. I’m so afraid of clowns! 🤡 Even before it was trendy! Maybe this week I can catch up on OITNB and Kimmy Schmidt, too. I’m even thinking of picking up a book. I feel centred enough to try.

I hope you’re doing well!

💜

PS, I felt like a real Zebra the other day! I was doing something where I put my arms out or something, and my son freaked out and asked if I was turning my arm upside down because it looked freaky. My arms are pretty normal, as Zebra arms go, but it made me laugh. 😄

Standing Ovation

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I am an advice column junkie. I just adore them. Maybe I like to know there are people who have more problems than I do. Or that maybe having friends isn’t all it’s cracked up to be, anyway. Whenever I had friends, they all had crazy rules that they never told me about. I had to guess. Then people would get angry when I didn’t ‘know’. Like this one friend who was really sensitive about talking about her family. My dad had a mild stroke a few years ago, and, coincidentally, hers had one a day later. She didn’t ask about my dad, so I took this as a signal she didn’t want to discuss it. Well, you guessed it. She flew into a rage a few weeks later about how I never ask about her family. Well, she never asks about mine, either, I thought we were setting a tone? Ugh.

Then, of course, having to be informed two childhood friends aren’t speaking to me. It occurred to me the other day: Are there more? 🤣 how do you decide to no longer speak to a person you never interact with. Boggles me. I really want an explanation of the evolution of this. Because it’s so…

Anyway, reading Dear Prudence, which I pay for the Plus membership at Slate, because I love it. I saw this article and I had to share.

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And you can also see I’ve been shopping for slipper socks, they are inexplicably called reading socks now. If you are in Canada, indigo has some for $5. Last year’s sherpas! Fuzzy! We are also supposed to trade in our 2014 minivan. Wtf ? Our prior car was an 88 Caprice Classic. This trade in every 3 year garbage? No way. Plus, hubby is 6’5″ when he gets comfy, he stays put. He also only drives it on weekends to Wal-Mart and the grocery store.

He’s snoring away with dental floss in his mouth! Aww!

Goodnight all! 💜

 

Stunned.

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Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

Inconvenient Sleep Habits

In the first place, my body is being a big jerk. It won’t let giphy15me sleep at any time there is another person in this house asleep.  On top of that, I’ve caught my daughter’s cold. Which isn’t a horrible one, it’s just that I’m a terrible wimp when it comes to having a sore throat. I find that pretty funny, actually.  I am also suffering with yeast infections for some reason. I am having incredibly awful pelvic and back pain. If it’s not gone by morning, I’m actually going in somewhere. It’s incredible. I don’t know what is causing this. I was having terrible problems for almost eight months about two years ago. I had fungal infections all along the inside of my thighs and my under my breasts. My pharmacist recommended cranberry tablets. It was funny how I discovered this. My husband is in charge of all my medicine. He had asked the pharmacist about this problem and received this answer. I had been taking them for a while before I noticed. When I asked about them, I received an explanation, which I denounced as hogwash. Husband asked if the thrush had cleared up, to which I had to admit, yes it had. Unfortunately, I have been not so great at taking my pills, as I sleep at odd hours, missing some. I need to pay attention, get back on track.

Although, that is difficult when you’re curled in a ball whimpering.

I’ve found that around midnight, I usually start crying. It doesn’t last long, usually less than 30 seconds. I’ve never gone longer than 3 minutes. But I have had a few minutes to myself to be scared and break down before I put my face back on. The everything will be ok, face. Or maybe I sob out of self pity. I have some of those, too, I’m certain.

I can’t deny I’m stressed. My mother needs support and I can’t offer it to her. I’m likely the only one, besides her sister, she has. My husband is too overworked to give me the support I need. I ask for things, 10 minutes of his time, and it’s to the point where this is becoming problematic to schedule. Tonight, I wanted help with two rather unimportant things, I waited until bedtime at 9:00, but almost didn’t accomplish them because of all the distractions etc. He keeps telling me he answered me when he didn’t. It’s so frustrating. I know it’s not my memory, either. Sigh. 11:00. We need a better strategy.

Trouble with midnight painsomnia is I can’t vape or watch TV 🤣. Our sofa is not a place to banish people to. I can’t make it downstairs on my own, either.

I’ve been cleaning out drawers. Nesting. It’s my favourite thing to do. It’s been hard work, but I always feel better afterward.

Can I ask a question of my friends who are on the Autism Spectrum? How offensive is the term Aspie? Or Aspy? Here’s why: I have so much to talk about with my family, with three of them being on the spectrum. Daughter, diagnosed Aspergers, husband not diagnosed, but clearly on the spectrum, and my son will be diagnosed when he returns to school. I have so much to share about parenting and what living with these folks is like, I was thinking of…ugh, a third blog. Ugh. I know. But the name Three Aspies and a Zebra sounded good to me, I just didn’t want to be offensive. Open to any good name suggestions! Speaking to the blog, for example, my kids have no idea when people are joking. My daughter went to the CNE, I asked her to buy me some donuts, which are off my FODMAP plan. She’s 15, btw. She started crying because she didn’t know if I was kidding, and if she should really do it because they might hurt me, and she didn’t want to be responsible for me getting sick. She’s so sweet! 💜

My husband is snoring sweetly beside me. I want to whack him with a pillow. Nah, I know that if the kids stir or if I call out, he will be up. His beloved aquarium was acting up earlier, so he’s annoyed. He gives time to the kids, and I can’t begrudge my own kids and his source of income, as he was finishing a course for work, too.

I just can’t stop needing what I need or feeling what I feel. Here come the tears. Must be midnight. Exactly.

Ah, going to go find some cat memes. I always get melancholy when I’m sick. Boo.

💜

 

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!

❤

 

 

Heart Test

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I had a heart test this morning. I needed to have one before they would let me into the EDS clinic. So there should be about a weeks wait before I see the results of that. They expect a six month wait for the clinic, so I just need to hang on. I hope they can do something, because I feel like crap. I don’t have much of a life going on, and even the cab ride was pretty tough.

The test itself was fairly intense. I’m used to the quick EKGs where they clip you on and monitor for about 5 minutes, but she did a full ultrasound. I brought husband along, as he’s good at Intel, he’s my sherpa, and I am not too steady at the moment. He helped me change, I just had to get naked from the waist up. I lay on my left side and then my back while she spent at least 20 minutes with the ultrasound on my chest.

My husband couldn’t figure anything out. He said some of the notes said my heart was of normal size, which sounds good. I’m curious as I’m now sleeping up to two 24 hour periods a week. That isn’t normal. It could be pain, though. My head still hurts a lot. My neck hurts. I just try and do things despite the pain. If I don’t, I will just sleep all the time. That’s no life at all.

Still waiting on the neurologist.

I did get a rubdown in Voltaren before we left, and it really helped. I need a cabana boy. Someone to bring me drinks and rub me down and act as eye candy. 😀 I wonder if my husband would quit his day job… nah, I want new blood! Ha ha ha! Okay, I’ve lost my mind! I do need someone to rub lotion on me and make certain I take my medicine. That’s what I need.

All right. I need to go look up some braces on the net. My knees and elbows have revolted enough.

Be good. 😊

I Have Two Speeds…

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My symptoms tend to subside in the summer to an amazing extent, now that I think about it. It’s surprising, considering the amount I hurt now.

I essentially have two speeds at the moment. Feeling as well as I am able, which is pretty alright! I can squeeze a good almost five hours out of a day if I rest up appropriately, three if I want to keep going.  That is amazing. My hands hurt and my back, neck, and head are often excruciating, but distraction and movement are good.

Sleep has been a problem, however. I am exhausted at 9:00, I take my sleeping pill and at 10:00 I am wide awake until 2:00 am. Without the pill, I fall asleep and am awake at 2:00. Sleeping during the day means I don’t sleep at night. I’m at a loss. I guess I keep trying until it works itself out.

My tongue isn’t swelling any more, so perhaps it is just getting the last bit of this illness.

Okay, off to tackle the day! 😁 have a good one! Sure, it’s 1:00 p.m. I’m a slow starter. Today, anyway!