Worn Out

It’s been a long week. I don’t feel like I’ve had much time to myself. My kids have been needy. Which is fine, I just haven’t had any recovery time. I don’t feel like many of my interactions with the world have been all that pleasant, either. Every second person who contacts me on Facebook messenger is trying to sell me something. And these are brand new friends, not people I’ve had interaction with!

My lovely husband ran out and picked up new cable boxes for us last night. All last week they wouldn’t turn on, I couldn’t get any television at all..unless it would randomly decide to turn on, which it did occasionally. But mostly it would be pixillated garbage. The cable company would reset, but last night they finally said, yeah we have to replace those things, so he took them in. It’s great, because now I actually have room to record stuff. This has 400x the space or something. But the downside is I can’t read the guide. It’s on my tablet, but… blah.

We did our taxes. We spent $34,000 on out of pocket medical expenses last year. We are damn lucky to have that money, that’s my pension/Ltd money income right there. That went to medical marijuana, therapy for me and the kids, orthodontic work, likely, and my injection fees for Botox. I was mistaken about the tax situation. It turns out we get 3% of it back in our taxes. Whee. I don’t know what I could have done without that treatment. I’d probably be dead. I’d be in so much pain. Those are my two main sources of pain relief, Botox and mmj. Not to mention getting into the pain clinic which costs. There’s a huge fee. I’d have done myself in.

My neck is hurting so bad and I have such nausea today I am in tears. I had to help my son today with homework, and I snapped when he stabbed me with his pencil once too often. I feel awful.

I just need a break. I need a night out. With friends. Not a tall order at all!

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

 

 

Musings

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I had a huge nap this afternoon. Β I’m feeling somewhat refreshed. I can always sleep. That’s the problem. These damn medications. If I take enough to ease my pain, I am drowsy. If I take a sleeping pill so I can actually sleep, I’m tired the next day. If I don’t take the sleeping pill, I have painsomnia.

That right lower quadrant pain is back. My husband calls it my porcupine. I may have started that. It’s so painful. I’m nauseated. I haven’t eaten much today. That may contribute.

Am feeling slightly disappointed. I originally started this blog to help my friends understand what my life was like. Instead of writing it on Facebook, which I felt was intrusive, I brought it here. You guessed! No one is reading, I’m speaking to people who already know what it’s like.

I find I’m running into envy from people who don’t know what my life is really like. From people who presume I’ve had things easy. I try not to complain about my aches, my pains, my financial burdens, my pain crises, because it’s boring. It’s boring to read about, and it’s boring to talk about. I don’t want to focus on those things. I want to talk to my friends and be a real person. An average person.

Glancing at my Instagram feed, you may get the impression I live a luxury lifestyle full of makeup and glamour. I do buy a lot makeup, and I constantly feel the need to defend this, however it is my main form of entertainment. It is essentially all I do for fun. I do not leave the house most months, so buying some makeup, putting it on, taking some Selfies can be tons of fun! Throw in an old product once in a while, plus my husband goes without so I can be entertained. My children are not huge consumers, and having free time plus loyalty points means I can cash in on sales. It, like most of the internet, is illusion.

I know I have advantages. My husband makes quite a bit of money. Why does nobody ever ask me about the career I lost? The one I’m mourning? Do they know his every success kills me a little inside? But we are sacrificing much of our kids’ future on medical expenses. Without some clever accounting, and massive amounts of luck, we probably wouldn’t be able to retire at all. My husband currently has to work until age 72.

Many people assume I don’t have an income. As a 50th anniversary gift, my husband and I paid for my in-laws anniversary party. They were given a cheque from our joint account. They still thanked him. Sent him a thank you card, and bought him a thank you gift. We’ve been married 15 years.

Another thing is that I am older than many of my friends. I don’t know if it’s the EDS that’s kept my face youthful looking. It could be good genes, or perhaps hiding in my bedroom for 15 years away from sunlight, but maybe people think I’ve achieved things at the age of 30 instead of nearly 50?

I don’t know what to do to dispel these myths. Do I start being honest? How does one be honest and upbeat? Can it be done? Maybe I should try anyway. I’m sick of being treated like an airhead princess.

Stay beautiful, Zebras! 😘

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? πŸ˜‚ 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. Β 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! 😘

This Wasn’t the Distraction I Wanted

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My husband has had a problem with a serious, painful, eye infection since October. Which, of course, is why I posted a photo of Marty Feldman from Young Frankenstein. Great movie. Anyway, this infection has been nasty, painful, and kind of gross. It turns his gorgeous deep blue eyes sort of icy, and then add the red…he looks like a serial killer in a horror movie

He also had cataract surgery in November. Or was it glaucoma surgery? He has both. He’s only 48, so it’s really unusual, but there’s a family history, plus he had this panic attack in August of 2015 that wasn’t..things weren’t right after. Because he is only 48 and still had vision, the Ontario government wouldn’t pay for it. So we could pay the Β $9,500 for surgery, or use the drops for two years until he hit fifty.

In Canada, the health care is controlled provincially, so what happens in one province may not happen in another. Also, if you spend something like (approximately) 4% of your income on medical expenses, you can claim them on your taxes. Well, that ends up pretty simple for us. With my son’s physical and emotional therapy for Aspergers, my daughter’s Aspergers emotional therapy, my emotional therapy, injection fees, braces, equipment, medicine that we pay for…I believe there is a $1,000 deductible before we get to 100% of our medications covered by our employer plan. So we get there pretty easily.

When my husband sought treatment originally, Β the doctor was alarmed. Husband had gone to our GP as our Eye Specialist was in Mexico volunteering, as he does every year. The GP remarked this was highly contagious and couldn’t believe nobody in the house had it. When the Eye Doctor returned 5 days later, husband was chastised for not going there first! πŸ˜„ We got some strong drops, the eyes cleared up and all was good.

The drops finished on Monday. Today at work, he texted me at 10:30 to let me know his eyes are bright red again. He called the doctor, the eye specialist, but can’t be seen until after 2:30. He waited and went straight there.

The doctor noticed he had swelling internal to his eyes, and gave him drops at 10x the strength. Husband has to go back on Friday after my appointment with my doctor. He explained the situation and is just going to get there when he gets there. I have some great community support here.

I was teasing my husband he was jealous of my infirmity and wanted to emulate it. He is so healthy and capable, this is a bit disconcerting. I hope this takes this time, I hate to see him in pain. He always hides it, but I know it’s bothering him.

Also, he’s been texting me all day, and I have been struggling to get something – anything! Done! πŸ˜‹