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. 😄

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.

💜

 

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. ❤

 

 

Sunday’s Scoop

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Does anyone else do this when they are sitting or lying with their legs straight?  I’ve done this all my life, and wonder if other people do it, too. I don’t know if it’s EDS related, but it makes people laugh.

I’m starting to be mildly concerned about my head. The headaches are becoming persistent and my face constantly hurts. The pain in my head isn’t bad, though, just constant. My short term memory is getting worse, and I’m sleeping more and more. I’m so tired. I wonder if it’s the heat, although husband did some tinkering last night and it’s much better in here.

My husband is by no means lazy, he is so overwhelmed things aren’t being taken care of that need doing. I finally insisted we have a night where he comes to bed at 7:00 so I can talk to him. Otherwise I don’t get to see him. He comes to bed at 9. Closer to 9:30, and I’m not keen on bothering him when he’s fighting to stay awake until 10:30 so he can have spent time with me.

I do try to take the burden, but there’s only so much I can do. I’m trying to organize things on my side, and that’s helping, so there’s that.

I have a heart test this week. Is that the Eeg or EKG? I can never remember. It’s the last test before I am on the list for the EDS clinic. Six month wait. I hope they can speed it up.

Ok, I need to move.

Be well!

I am a Staaaaaaar!

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I adore Bob’s Burgers.  So much that Archer is weird now.

I have been neglectful of my blogging responsibilities. I am sorry. I have been spending all weekend rearranging my living space with the assistance of my family. We are not quite done, because they move like turtles. Well, they did until we straightened some things out. I like to give orders 1 through 10 and have them completed. Now go away and leave me until I need you again or work on task X. We were working as I was giving an instruction and waiting for it. Ugh. No. We sorted through a ton of my makeup and skincare. I feel well organized, because if I can argue my way into a couple more steps, I will be quite independent.

I was going to do my blog about beauty today, but I decided to nap. I think it was a great idea, because I was out. From 3 until 6. But here I am at 1 am, exhausted and unable to sleep. I don’t understand. How does this keep happening? I try to stay up, I fall asleep out of exhaustion, just a bit, and I’m still awake! I see another sleep study in my future!

I finished my medicine from the infection I had on Saturday. I felt great! Unfortunately, my tongue is starting to tingle and swell and go numb again. My lips a bit, too. My husband is off tomorrow for his eye appointment.  I dont want him to drag me to the doctor. Besides. I don’t want to go. I’ve NEVER had anything weird like this before! I don’t want to be around any more sick people (acutely). (Contagious)

For those who spend much time in bed, how do you configure your kingdom? I wonder if some of my back pain is in my setup, and would love some ideas of what to change!

One of the things I was going to do was pick up a book instead of a tablet at this hour. I sensed my husband was semi awake. He is autistic, what they used to call Aspergers, though not formally diagnosed*. I asked if he had a book light. He asked if I was going to read. I replied exasperated “No, I’m going to perform a colonoscopy!” He shot back he’d get the better flashlight. Thing with him, though, and all autistic people are different, although some are similar, you don’t know if it was sleep mutter, deadpan humour, or strict logic.

*Our daughter was diagnosed in 7th or 8th grade and the staff all commented on how exactly alike they are. Eerily alike. They look alike, they think alike, yeah.

So that’s been what I’ve been up to. Someone else is walking around the house. Probably my daughter, the other Insomniac. She’s so tired during the day, too.  We should make a boys club and a girls club. The girls can sleep all day, the boys can bring us food when they have time, and they can go to work during the day and sleep at night. Our daughter and I will stay up and watch Netflix. 😂. Our son has daycamp. We should cross paths morning and evening. Oh, goodness, can you imagine? Shift Workers do it, and it must be great for those who are dedicated or wired that way. I’m not really sleeping at all, just four to five hours altogether. It’s not helping me fight whatever body is fighting. I spend hours just lying here resting. I used to be a 9 hour a night person. My whole life.

I hope you have a great sleep!

PS   Sorry I sound kind of grouchy. 🤐 I dont want to be around me either! 😄