Lies I’ve Been Told…

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“Looks aren’t that important in life, it’s what’s inside a person that matters.” …

“I am your friend,”…

“That looks great on you!” …

“You’ll regret it!” …

“I’ll never tell anyone, I swear!” …

“You can count on me!”…

“This medication is non-addictive.”…

“I would never lie to you,”…

“I love you!” countless…

“If you lose weight you’ll feel better!” x infinity…

“Your doctor will call you back in three days…”.

“Your doctor will call you on Tuesday.”.

(Sigh)

Now, to be fair, it seems the clinic is moving floors. It essentially broke down earlier this year (at last check, admittedly a bit ago, only complaint with my doctor who ran clinic is about paperwork. Will keep you posted. Must have hubby do checking am too weak),  and it seems to have merged with another pain management service. My new doctor, who was only in this clinic once a week anyway, has not been in, due to the chaos. I have confirmed the scan is on my file. Now, I don’t even know if the doctor to administer the blood patch is still on staff. I caught a quick article up online for only a couple of hours that stated there are no doctors in my home city to treat chiari if it turns out to be. I will burn that bridge when I get to it, but I am pretty miserable here. I essentially lie in the dark most of the time. The straighter my neck the better. My vision is very bad. My tablet is turned way down, as is the tv. Very dark. I can’t stand noise. So it’s not always watchable or useable in the tablets case. Last week was great- I could sit horizontally and play with makeup for a little bit! Have a rest. Organize some items I had tossed aside when feeling terribler. So much better than lying on my side in the dark. I have incredible trouble sleeping, so I stare into black space for hours. It can be awful. And the facial pain. Ay-yi. And the back pain so bad you almost faint, but you don’t.  Because you’re home alone. On really good days I get to sit up for a while before the pain starts, the nausea and dizzy take over. On really really good days you can turn on a lamp.

The EDS Clinic said I could be in to the pain clinic there by the end of June, so hope oozes from every pore! No, I am grateful as I’ve been inappropriately medicated for a long time. I would like to sleep, maybe? Once a week? My former pain doctor had been planning to change my plans for medication for a while, as he suspected I might be causing myself pain with what I am on. (Apparently it’s a thing) Plus it has been a year since I have had proper migraine shots, so dealing with intermittent migraines, too. Fun! 😄

Oh, and a lady from Chiari Canada has been so lovely and supportive in corresponding with me, even though she is so busy. I appreciate it so much.

My rugrats gave me their flu or cold or whatever… I am not amused. I shall take my whiny butt back under the blanket.

I shall let you know.

 

 

One Lovely Blog Award

wp-1487621709466.jpgIt’s a long weekend here in Canada, and I spent all day yesterday puttering around. I didn’t make time to blog. I still wasnt feeling great from the bug, but I’m recovering amazingly well, compared to how I’ve fared in the past. So it was a lovely surprise to find this notice in my email this morning!

I had been nominated by fellow migraine sufferer and football fan MyGraine  (Thank you so very much! 😘)

 

Rules:

  • Thank the person that nominated you and leave a link to their blog
  • Post about the award
  • Share seven facts about yourself
  • Nominate at most 15 other people
  • Tell your nominees the good news.

 

About this award:

A fantastic reminder to be positive and get behind all of the artistry and bravery of those sharing their stories and thoughts.

 

Seven Facts About Me:

  1. I am a huge Monty Python fan. My girlfriends and I used to get together for sleepovers in middle school and watch Monty Python videos we had recorded on Beta max. My son sings “Always Look on the Bright Side of Life” constantly.  My favourite character is Caebaernog.
  2. I married my first husband in Las Vegas, on the same day as Bruce Willis and Demi Moore got married. My ex husband later introduced me to my current (and last!) husband, who is the absolute love of my life, so I know he, at the very least, turned out to be good for something.
  3. I love the Toronto Raptors, they played their first professional game on my 26th birthday.
  4. I sleep with an adorable pink rabbit that used to belong to my husband.
  5. Both my children and my husband have a form of autism.
  6. Animated TV shows for adults are my favourites. Bob’s Burgers, Archer, and The Simpsons are what I usually watch.
  7. My ex husband used to call me hamster girl, because I love organizing and reorganizing things, and I can usually be heard rustling through papers. Trouble is, these days I get halfway through and I’m tired out.

 

My Nominees

  1. Arianne at Zebrawitch.
  2. Cait at Warriorprincesscait.
  3. Vicki at Lady Chariot.
  4. The amazing twiggyjen44 blogging at Jenlandia .
  5. Megan at http://www.justclicklikeblog.wordpress.com.
  6. http://www.Mychronicpaindiaries.wordpress.Com
  7. Capricious Lestrange at http://www.disabilitydepotblog.wordpress.com.

 

It’s been quite a day! Have a lovely evening, my Zebras! 😘

Dark Days

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I have never felt so dark as I have the past few days. The pain just feels never-ending. I don’t feel like there are any bright spots anymore. The tears keep falling. I know this is a temporary state, but damn, it’s no fun to go through.

I try so hard to be stoic all the time. I try to pretend I have this. It’s no problem for me to lie in bed all day every day and play on the computer. But it’s a huge problem. People don’t realize, I think, that when everyone on Facebook decides to have a shitty day, I don’t get to go outside and find other people to talk to. I’m stuck with what I’ve got.

I’m trying not to turn this into an ‘everybody is being mean to me’ because that is certainly not the case. I know I’m very sensitive right now, probably not safe for human consumption, and feeling very left behind, and I have no way of communicating this without feeling like I’m whining, because I’m in too much pain to do anything but whine.

I feel like my soul is being slowly ripped from my body. I just want this to end.

I was thinking yesterday, I would love to just have a day off. To just hand over my pain for a day. But whom would I burden with that? Oh, you know my first choice. Someone who needs to make decisions on health care reform. But is there someone else who needs to know what this is like? I couldn’t even do this to my ex-husband. I don’t particularly hate him, but sometimes, you know, I think he was kind of clueless.

My good friend is chronically ill. She’s lovely. She always says this thing, though, that interests me. When she’s talking about her pain she says, “but it’s nothing as bad as yours.”. She’s not the only one who does this. It’s so interesting to me because to me, pain is so individual. It may be that I’m a big wimp 😀. It’s almost not how much pain hurts, but how much it disables you.

My husband just interrupted me for a conversation. He is home today because he had a sleep study done last night. When he originally booked it, he thought it was the Family Day long weekend. I’m vaping as I blog, so I’m feeling better as I go. I’ve spilled my guts to him, and we’ve decided to cancel my dentist appointment for this afternoon. They are so darn good to me. They allow me to cancel and fit me in when they can. The weather is terrible. Snow and ice. I can’t get over the snow banks on a good day, but the ice? We have to try again. I really need a new bite guard.

So, my husband thinks I should medicate myself as much as I am allowed. Then take a warm bath. He will ensure I’m okay, and I don’t stop breathing. I mean, I’m not taking the same things as Michelle McNamara, but Patton Oswalt pulls at the heartstrings, ya know?

Our neighbour’s young daughter knocked on the door this morning to say ‘hi’. She informed my husband her father was at work and her mummy was at work. My husband told her he was at work (liar!) because sometimes they let him work from home, and our children were at school because it was Monday. Her eyes got big and expression was surprised. “Monday!” She repeated. He heard her grandmother start to frantically start to call for her two doors down, “Grandma, I’m visiting my friends!” She called back as she scrambled down the stairs.

Husband came up and began to tell me the story. We heard frantic banging against the door, as if someone were throwing their whole body against it. “Goodbye!” She called as he opened the door, “Grandma’s taking me to school!” As she flew down the steps and down the walk.

He also reminded me that it’s February and Valentine’s day is coming up. This may explain the rash of sudden expressions of love (or whatever) and some of the grouchiness. I can totally get that! Whether it’s being just sick of winter in general, or hating Valentine’s day, whether in or out of a relationship, February is a tough month.

Sometimes it is straight out hostility. It’s so funny, too, what people perceive about your life. I know I’ve lost at least one close friendship over jealousy of my relationship. It is incredibly sad, because I just figured it out recently. If this woman could only see my life now! I guess it seems great on paper, doting husband, two kids (who happen to be awesome), good drugs, lie around all day, play with makeup… but where does the horrible isolation fit in? The feeling everything you say is completely stupid and pitied? The aching in every part of your body every day, including your pubic bone? Doctors constantly questioning your mental state…are you depressed? You seem depressed. Of course I’m depressed you fucking nitwit! But this is temporary. This dark mood. They come and go.

Stay in the light, my mutant collagen cousins! 😘