My Life as a Spoonie

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I go through these periods where I am just exhausted all the time. It happened yesterday. I lay down for two hours. Slept right through my alarm, and my family woke me up at 7:00 to have cake. Mmmm cake! There is an illness called Sleeping Beauty Syndrome. I’ve often wondered if I have a variant of it.

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Cake!

My day typically looks like this:

  • Wake up at 6:00 am, hit the snooze for half an hour.
  • 6:30, washroom
  • Answer any questions or comments on Instagram and post until 7:00.
  • 7:00 am take medication. 13 pills. One mouthful.
  • Post on my Beauty Blog usually until 9:00 am.
  • Between 7 and 9 am, have coffee and oatmeal delivered by husband and daughter, coax son into going to school, monitor progress by text, and monitor daughter’s progress by text.
  • 9:00 am vape marijuana. While perusing Facebook and catching up with friends. Talking on phone, reading email, texting husband. Online shopping.
  • 11:00 start thinking about the EDS Chronicles.
  • 12:00 lunch and blogging. Lunch has been left for me by my husband. 1 oz of Lactose free cheese and some gluten-free crackers. I hate eating. I have cookies, too.
  • 1:00 my post is usually up, lunch is done. Here is where I either nap for a couple of hours or do something else. If the pain is bad, I sleep. I try to play with stuff for Instagram or my Beauty Blog. I want to read, too. But my concentration has been awful.
  • 3:00 Dr. Phil. I watch the first five minutes, call him a quack and tune out. Time for pills.
  • 4:00 sometimes my boy comes up and watches the Simpsons with me.
  • 6:00 is pill time.
  • 6:30 Husband is usually home around now. I’m still stuck in bed. Daughter rules downstairs, she just feels like she needs her space, and it’s so uncomfortable for me, so tough to get down there, it’s not worth it.
  • Between 8:00 and 9:00 I get the pictures for the next day ready.
  • Husband comes to bed around 9:00 and we have time together. It’s also melatonin time and time for marijuana oil.
  • 10:00 last pills of the day. I usually read a few last articles and then put my arm brace, mouth guard, and CPAP on and by 10:30 I’m out.

It’s been good not sleeping as much. I used to sleep all day almost every day. I was afraid I would never get enough rest. But I was tired all the time, anyway. This is different, though. This morning, I woke up and I couldn’t uncurl. I couldn’t straighten up. My abdominal pain is just so bad. My back pain. Maybe I’m having a childbirth flashback? 😂 since it was my daughter’s birthday yesterday!

I pause a lot for rest and breaks in everything I do. I have cramps, my hands hurt. Things work out if I work to my limit and go slowly, but all it takes is one day to mess it up. One day where I want to go out. Then I am in bed for a week. I can’t do anything. In fact, I’m feeling the strain of the other blog. I’m just having so much fun, though. Why can’t I keep anything?

I’m supposed to meet my friend tomorrow.  I hope she’s okay hanging here. I’m hurty. I’m still going to try to bathe. I have a sore on my hip. I find I get them even if I’m clean. It’s from skin rubbing together, right? They smell awful. I have cream. Ugh. I don’t have a lot of hanging skin from losing weight, but when stuck in bed, you get squished a lot.

My husband was super sweet the other day. I nearly had a conniption because Shoppers Drug Mart, a drugstore here in Canada, is now carrying Pixi Beauty! It’s a super high end drugstore, without high prices. It’s amazing. Anyway, we were having an ice storm here in Toronto, and they had stopped the streetcars, so he had walked partway from work, feeling terrible because he’s on steroids for his eyes, and he stops at the store whilst waiting for the bus and texts me asking what I want. So we settle on quite a few things,

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What darling husband bought for me $124 CDN

After the excursion, and he at first found the makeup, and he persevered and found the skincare, he just missed the bus and had to wait 30 minutes for another. What a sweetheart. He needs to do so much for me. Like cooking my dinner. Bringing it to me. Getting my clothes out for me when I go out. I don’t know what I would do without him. He’s also my very best friend. Imagine that!

I was too tired to eat dinner last night. I had just woken up from a nap, and I was still too tired. My back is killing me.

My husband had glaucoma and cataracts last year and needed surgery. He’s only 48. He’s had a bad infection that started before the surgery, they had it under control with steroids, but as soon as he went off them, it came back. Now he’s on super strong steroids and doesn’t feel well. He was complaining he didn’t like the general feeling of unwellness and achiness all the time. I just looked at him and he apologised! I laughed. It’s fine. It isn’t fun. Poor guy.

Be well, my zebras! 😘

4 thoughts on “My Life as a Spoonie

  1. 13 pills in one mouthful?! I’m heaving just thinking of one!!

    I got this lovely gold glittery pixie highlighter you have just reminded me to use.

    Also what is your instagram account called? I use insta more than any other social media.

    Also!! How lovely is your husband. What a star. And sorry to hear of his eye troubles. He’s young to be dealing with such big (and definitely not fun) eye conditions. The former optician in me is interested and sympathetic x

    Liked by 1 person

    • I’m an amazing pill swallower. It’s one of my best tricks! I’m @squidgeaboo ! Let me know whom you are so I can follow you back! My husband is just lovely. He is so kind and caring, just perfect. He does things like this all the time 😍 He is just wonderful. So gentle. Never complains about me being in pain. Told me to have a nap today as I was in too much pain to make decisions and he was working from home so he could take our boy to therapy tonight. BTW, I would love that Highlighter! I don’t think we have the whole line, but glow tonic! I bought some last May at Generation Beauty and have been trying to make it last! Husband’s eyes: um, they thought it was viral, it went away with steroids red and itchy, painful, he had surgery, went well, the infection came back. Nobody here got it. More steroids, when he finished the steroids two days later it was back. This time his eyes were swollen, too. Steroids 10x as strong, every 2 hrs. 6 hrs to sleep. Within a week he was okay, pulling the drops back to 4x per day? He feels crappy, but his eyes aren’t red and swelling is down, he is light sensitive and fluorescent lights ‘pulse’. The doctor is OK with that, but he has Carte blanche to stop in, and a weekly Saturday appointment. This is where we are, it’s just, do these steroids knock it out? I will let you know! There is also a link to all my social media on my page in the bottom left corner, if you want to friend or follow me on anything! 😘 I’ll follow you back!

      Liked by 1 person

      • I’m insight_deville. Just followed you.

        Aww your poor husband! Glaucoma is horrendous and can be incredibly painful! I’m so pleased you’ve got such a wonderful family unit.

        Next time I’m not actively avoiding Facebook for sanity’s sake, I’ll add you up! X

        Liked by 1 person

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