Gurgle

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I slept until 3:00 this afternoon.  I woke to my husband stumbling into the bedroom declaring he just had a nap! This may be the first nap he has ever taken as an adult.

On Friday I was waiting for Pat McGrath’s lipstick collection to drop at noon, and at 11:45, I started vomiting. I managed to buy some lipstick, but then took a nap. Saturday, I was just as gross, and I finally figured out I may have the flu. Considering my daughter has it, and likely my husband does, and my son has been feeling awful… I just may be a genius. There’s been a nasty flu going around here, and my daughter has been having trouble since before school started. She’s either had it twice, or had an extended remix.

My mom was so sweet, she sent me some money on Friday to buy a treat to cheer myself up. From both her and dad. So sweet.

It was tough, but I had to put my Beauty Blog on hiatus until October 5th. I just don’t have the spoons to keep up with it right now. I’m so sad, because it’s one of my favourite things. I’m hoping the neurologist has a theory and I’m feeling better. I would like some answers and a plan.

When I can’t even do the small things, it’s a problem.

I need joy. To be able to supply joy. And I’m not even talking about sex. I’m so many layers below sex, you can’t even imagine. I have about ten layers to go before I even can think about sex.

On this level is bathing, reading, amusing myself, sitting up, and taking my medications. Not just staring into space.

Sigh.

💜

I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜

 

 

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! 😘