I was a Dairy Queen yesterday evening with Colt and Dayne to order Colt’s ice cream cake for his birthday. We always get an 8 inch cake (feeds 8-10 lol!) and we all have a slice on his birthday and put the rest in the freezer. Colt will have ice cream cake desert for the entire next week, which he looks so forward to and savours each year. Dairy Queen, if you’re not familiar, is a fast food restaurant who specializes in incredibly delicious ice cream, sundaes and other frozen treats like ice cream blended with chocolate bars, M&M’s, brownies, cheesecake etc. Everything there is delicious. My favourite is their plain vanilla soft serve ice cream dipped in a chocolate syrup that hardens instantly into a shell….mmm. So good.
We arrived around 7 pm and there was one couple ahead of us in line….nice and quiet for a hot summer evening. Ordering the cake only took a few moments as we are picking it up tomorrow so they only needed our preferences (strawberry ice cream with a cheesecake and fresh strawberry middle layer with more strawberry on the bottom. *drools*). We ordered a treat each and then settled in to wait…for some reason, they always seem under staffed at these stores and each item takes a long time to prepare so it’s always a bit of a test in patience, ordering there. We were waiting while they rang in the next people and, as the number of customers who had paid and were now awaiting their ice cream grew, we all shuffled around to make more space at the counter. Dayne poked me and leaned in.
“I think that woman over there is plotting to kill you.”
I looked in the direction he had nodded and met the eyes of a woman in her 50’s, very conservative looking and very much in keeping with the sort of people who live in that end of town. (We went to the DQ in the north end where all the gated communities are and where the doctors, successful business owners and University alumni build their enormous homes). The moment I met her eyes, she dropped hers, but the mask of contempt, of offence and judgement was well maintained.
“She must not approve of choice in ice cream.” Dayne whispered, making me laugh.
I get this sort of thing quite a bit out in public. I am professional at work and the only ink that shows is my falcon (on my left arm), my ankle piece (if I’m wearing sandals) and, occasionally, a few of the orange/red maple leaves on my shoulders if I happen to have a sleeveless top on. My jewelry is all gauged but I choose subtle designs, like hoops with metallic captive balls and my only facial piercing is a small, plain silver nose ring. When I’m off, I don’t bother with sensible cardigans and hair styles that shield even more of my style, and last night, I was all out there. I had on a black dress with red, green and yellow stripes at the hem, a black velvet choker-style necklace, and my newly brightened red and black hair half up and half down. My ears were uncovered by hair, my back piece was almost entirely exposed by the low back of the dress, and when I walked, the hem would shift to expose the bottom of one piece on my right thigh and the entirety of the left (on the outside of my leg, just above my knee). I also had on my kick-ass five-inch black Guess wedges. I felt so comfortable and so very much in tune with myself.
Now, don’t get me wrong, I do realize that when I present myself in that way, people are going to notice. Some will like the way I look and will tell me; some will like it and say nothing; some will think me a freak and wonder what could have possibly compelled me to do these things to my body; some will dislike it very much and will tell me so and, finally, some will silently seethed in judgement from across the room and loud-whisper insults to someone else, making sure I hear them without having to actually speak to me. ALL of the above reactions are just fine by me. It took me a long time to figure out that it was up to nobody but myself, how I presented to the world. I love my style and the art I wear on my skin and the opinions of a stranger in a DQ line mean very little and do not influence my taste in the least. Maybe that’s what pissed her off so much.
She stood there, several feet away, glaring daggers into my back for the entire time we were there waiting for our order. I could see veins pulsing at her temples, as if her entire face was clenched in the effort to keep her annoyance and anger to herself. I smiled every time I looked at her but it only made her dislike me more.
“Grainne, stop it.” Dayne said, trying not to smile himself.
I then went over to where Colt was sitting and we chatted for a few moments. I wanted her to know I had a kid. I actually contemplated telling her I was a lesbian and had my clit pierced (lol….no, I don’t actually have any genital piercings) just to watch her erupt but decided it would be a not-so-great lesson for Colt so, just continued to smile and wait. She barely took her eyes off me. Our order was finally called and I went up to rejoin Dayne at the counter. The angry lady was now only a person or away from me and when I looked at her again, and smiled, she shook her head, mouth set into a tight sneer, and doubled the intensity of her glare.
“Disgusting!” She muttered, eyes flicking off to the side as she spoke the word.
Colt, having picked up on the outright aggression flowing my way, put his arm around me protectively.
“Why is that lady angry with you?” He asked.
She immediately turned from us, having been called out in front of a now very long line of customers.
“I don’t think she likes the way I look, Colt. Some people are just like that in the world. All you can do is smile and remember to be yourself, no matter what people like that say.”
(I enjoyed that more than I should have)
“It’s okay mom. Sometimes people don’t like me because I’m different too.” He gave me a hug.
I’m not sure if she realized he was autistic but the look of pride shining in Dayne’s eyes would have told the story had she glanced his way.
I generally won’t pick a fight over things like this because, as I said earlier, it really doesn’t bother me when people disagree with my ink or presentation as a whole. That I had the opportunity to turn the experience into a life-lesson for my son was a great thing, but watching that smug look drop from that woman’s face was the best part. She turned to watch us walk out and I caught her eye long enough to wink at her as I passed the store on the outside through the window and then I giggled all the way home.
What a world eh? There are SO many things out there that people could spend their energy focused on that would make a positive difference in the lives of others, and yet so many people choose to focus on the insignificant things that irritate them personally and use that focus to try to bring other people down. If people would just choose to hold each other UP, being Human would mean something entirely different.
Anyway – here’s some shots of my ink for my newer readers – so you can see what caused this stranger such displeasure while she waited for her ice cream on a hot summer evening.
Okay, NOW I feel like I’ve had a break from work. I still won’t allow myself to dwell on that work that is currently not getting done and will be awaiting me upon my return next Monday and it’s working pretty well. Today, I have done absolutely nothing. I got up, took meds, got the boy some fresh strawberries for breakfast and then played on my phone and laptop until this moment, and it’s 325 in the afternoon. I have to get Dayne’s nice pants and shirt ready as he has an interview tonight after work but I have time for that yet. I think they are all hung up and ready to go so there won’t be much to do but lay them out for him. (He’ll have about twenty minutes turn around between getting home and getting to his interview. Might end up having to deliver his clothes to him and waiting for him until his interview is done so he can collect his work truck and get home for the night. He’s taking Thursday and Friday off so we’ll have a nice long weekend between us. It’s Colt’s birthday this weekend so we’re planning on enjoying whatever he wants to do with his day. So far we have been requested to: Decorate the living room for when he wakes up but ONLY the lining room and not too much; out for breakfast to the local joint that makes the best waffles I’ve ever tasted – and now that all the local produce is ready and fresh, they will be spectacular!; A visit to a little park with monster slides and a water/splash pad thing (which he doesn’t really like much) and a huge bouncy, inflated trampoline (that he adores); Then, back home for dinner, presents and ice cream cake. As long as I promise not to sing too loud, decorate too much, or get too excited, he’s good to go. lol…
Colt spent last week diligently creating little paper puppets he’s drawn by hand and cut out of artist sketch paper. There’s a video series he is addicted to on YouTube called “Object Wars” which is a crudely homemade version of “Survivor” with …well…objects. There’s “Notebook” and “Fridge” and “Can of soda”…..very simple idea, and the viewers vote on who gets eliminated each week as they go through contests and such. He decided he wanted to make his own, since the next episode was taking too long to come out, and I’m super impressed by his handiwork. They are really cute, very expressive and their little faces are all unique and convey clear emotions and personalities. It’s been really cool watching the process of him creating something he’s not only having fun with, but is happy with. Colt never liked to create things because he could never get them to come out the way he wanted them to. If it didn’t look like a HD photo of a school bus when he was done with his crayons in Kindergarten, he was done, it got ripped into shreds and was never attempted again. These days, he’s so patient and careful….creative. It’s been wonderful to be a part of.
I got an email the other day from a friend at work who is turning 40 in September and he has been struggling with it. My turn was last year so I’ve had plenty of time to settle into the idea (and I’m actually totally fine with it – quite thankful for the life experience gained so far, in fact) but he remembers me not being so happy with the idea. He’s been ignoring it all year, the fact that he’s about to hit the big Four-O and now he’s found himself with less than a month to prepare his mind and he’s a bit stressed. I spoke with him this morning (took up all my socializing tolerance for the day!) and was quick to remind him of all the good parts of being this age. When you get to think back through all the relationships that have been built and destroyed, jobs you’ve worked and friends you’ve had….I mean, it’s pretty vast by this point. If you are 40 or above, you’ve likely been to school for many years, met dozens of people who became close and cherished (even if they’re no longer in your life), have lived through menial and (hopefully) fulfilling employment, possibly several times over. You’ve maybe been married, had children, been divorced or cheated on or left. Maybe, you’re still with the one you promised to love until death and there is still so much more to come. You have been through illness and recovery but have also lost people to illness you never thought you could live without. You have healed and blamed, and healed again, then understood….maybe forgave or maybe learned that you don’t always have to forgive people for what they have done with or to you. You have discovered how strong and courageous you really are. You have experience in the world and with life and there is no one to answer to but yourself and your own good judgement. Maybe you’ve learned that your judgement is shit…lol. That’s a valuable lesson too. You have messed up and made mistakes, taken blame you shouldn’t have and denied the parts you knew were yours to carry. You have also made a difference though and have brought happiness, love, comfort and wonder to some of the people around you. There are undeniably people out there, somewhere, who will never, ever forget you. I told him all this and then asked him what he thought the next 40 years would bring…..he told me to shut up and that I should go work for Hallmark writing greeting cards. lol! (If he didn’t want to hear it, he shouldn’t have asked!)😛
Dreams this weekend and last night were … active, to say the least. I’m now regularly waking up in random rooms of the house after sleep walking around. Last night Dayne, unable to remember if he locked the front door, flew from the bed and went running past me (I was in the washroom having a legit and fully awake pee) to check. It was locked and he calmed when he saw me, awake in the hallway. Poor guy nearly broke his neck.
Wow. Am I ever relaxed today. I needed this break. I just sat here for ten minutes and couldn’t come up with a single complaint. I mean, I have a headache and I’m pretty sore from all this lying around and doing nothing (wah me eh? lolol) but that’s not new. It’s just been a really nice week so far and I’m looking forward to a long weekend with my boys. (Oh and my house is so clean!!! I LOVE the house being this clean. One room per day has been my approach. Yesterday was my bedroom and just going in there makes me happy!)
I wish I always had this much time to spend on the important things. Something to take with me back to that office – but I won’t be thinking about that until the weekend comes. :)
I have always been terrified of storms. I’m not sure why, exactly, as I’ve never been in any physical danger when a storm hit, but for as long as I can remember, I’ve been afraid of them. Wind, in particular.
I remember back when I was very little, living with my foster family in a Toronto subdivision. We were not exactly in prime tornado territory but we often get weather warnings in the summer because there are a lot of thunder storms that move through the region. Where I am now is the place that gets the most lightning in Canada, in fact. It has something to do with being surrounded by the Great Lakes, I think. One of these ‘tornado watch’ warnings came through the television “emergency broadcast” with the horrifying bomb siren sounds screeching from the speakers to get everyone’s attention. There was a severe thunder storm brewing and a cold front moving in and funnel clouds had been spotted in the area. I was only little….maybe 3 or so, and I panicked. I ran around the house slamming windows closed (I didn’t know it was best to keep them open – I just wanted to keep the storm out!) and locked all the doors. I went so far as to lock the tiny little flip lock on the handle of the metal framed screen door at the front of the house. Then, I went into my closet and hid, waiting for the scary event to pass. I told my mother I was afraid but she just blew me off. I was kind of terrified of everything at that point so I don’t think she was being cruel on purpose. She just knew me well enough to know I’d be okay once it passed. (I could have used a kind word and a hug, now that I think back on it. I was just a little one and I remember tears rolling down my cheeks and my whole body trembling with fright.)
I went to hide and stayed there until I heard a loud pounding on the front door.
*OH MY GOD IT’S THE TORNADO!* I screamed in my head, too afraid to actually move or make a sound.
Of course, it wasn’t the storm…lol…it was my father who was stuck outside in the torrential rain, unable to get inside because I’d locked the screen door. My mother thought it was hilarious but he wasn’t so amused.
I still hate storms. I hate new articles about damage caused by storms, stupid shows about people who idiotically drive INTO storms for the sake of the thrill, and I hate videos of storm photos or damage. Hurricanes have the same effect on me, however, it would have to be a damn huge one to reach as far inland as I am so I don’t worry about them quite so much.
This morning, Dayne woke me by text at 9 am.
**Hey did you hear that there was a tiny tornado (ground spout? funnel? I can’t recall what the news called it but it was an F-0 on the rating scale they use) behind X’s house yesterday?**
I was up and wide awake in seconds. I looked it up on the news, checked out bystanders videos and then, reading there was very little damage done, relaxed a bit and kept investigating. I read that there was a children’s wooden swing set that had been picked up and deposited into the neighbour’s yard and some damage to a bit of siding on one of the homes right next to the house where the family who babysits Colt live. They are away on vacation (which is why I’m off as well) so I thought it a good idea to go check on the house, no knowing if neighbors had contacted them. When we pulled up, it was obvious it was their swing set that had been tossed about as the bright yellow slide was jammed, at a very awkward angle, into the neighbors shed roof and the other bits of it were scattered into the fields behind the houses. I took pictures and texted them to the family, just in case no one else did and they need to call insurance (they have solar panels on their roof and at least one was clearly smashed) and headed back home. It wasn’t until I got here that I suddenly realized, with a gasp, that had they not been away, all of us parents would have been at work and the kids, including Colt, would have been there, alone, when the storm hit. It wasn’t a long ordeal and the winds weren’t even that strong (80 mph but we get some pretty high winds here this time of year) but it would have been terrifying for them had it happened that way! Thank heavens they were away and Colt wasn’t there.
The other thing that bothers me is that they were the only house affected. Another home had some siding stripped off but it was a chunk of the swing set that caused that to happen, so really, a tornado formed, touched down, destroyed my friend’s swing set and called it a day.
I guess, if it had to happen, this was the mildest, gentlest way it could have gone. Regardless, I’m not leaving my house again today. More thunder storms are coming and I’m much happier holed up in my house, nice and close to the basement crawl space. I even have a plan to get the cats down there, if need be. Mind you, they will never talk to me again if I throw them into a dark hole in the ground without warning. Still….the other option would be decidedly worse.
And that’s my exciting Friday! Got my car fixed, got my phone fixed, got the kitchen, living room and bathroom clean, did my nails (twice), took Colt out for lunch and I’m done until tomorrow. Planning on a peaceful evening with no tornado warnings! (Work with me here, Mother Nature).
Well now, what’s this? I woke up a few moments ago (at noon) as my sweet boy crept into my bedroom to silently steal my iPad (he’s been up for an hour or two, happily enjoying his time alone in the house by simultaneously playing all the electronic things at once. He has his phone (not really a phone – it has no sim card and works only on WiFi for games and such), his dad’s iPad, the Wii game system, and his school iPad (unlocked for the summer, of course) all at the same time. He LOVES doing this and will hoard all the ‘screens’ he can when we aren’t looking, will take them to his room and, after putting on a movie he likes in his little TV/DVD player, will proceed to obliterate every outside noise (and even the ones in his head, I suspect) with an abundance of sound, lights, images and fast paced reaction required games. Right now I can hear his Shopkins game, Talking Tom, a movie I almost know by heart but can’t quite identify, Super Mario, and a YouTube video from one of those gaming channels I hate him watching. They aren’t bad in content but they tend to holler F-bombs loudly at unexpected moments….there’s also a lot of screeching and screaming that tends to wear on the nerves when you have to listen to it for hours on end from the other room. The swearing deal is now totally under control and Colt has the appropriate look of horror cross his face when he lets one slip in our company, plus we only had a single incident this entire summer at the babysitters so….all good on that front. Because he’s wised up to the rules, I don’t keep him away from things on YouTube that are age appropriate containing foul language like I used to. He is 12 after all and no longer a little one who seemed determined to corrupt his peers through his bad habits with language. lol….poor kid. He’s always been such a good boy but because he lacked the filters and instinct not to get into trouble he was monitored by everyone in his life everywhere he went. There is still a woman who comes to school every day to make him eat his lunch for heaven’s sake. This woman’s only job is to sit there and cajole the boy into eating his lunch, which is so lovingly packed by Dayne each and every morning. He’s careful not to put anything in there that would turn Colt away from the entire thing, like the slightest suggestion of nuts, seeds or cereal ANYWHERE involved. Even if something has a picture of a nut or seed on it he’s done. Nope. No thank you. Done. Once, Dayne thought it would be okay to put in a yogurt that had a muesli packet on the side (removed, of course) but the container mentioned the grains (didn’t even show them, it was just in the description) and Colt didn’t even want to touch his lunch bag for weeks afterwards. The lunch lady, a lovely woman who quite obviously adores our son, wrote a very terse note home scolding us for the error.
“You know, I had managed to get him eating almost half his lunch without complaint until the ‘muesli incident’.”
lol…I love that woman. She happens to live right across the road from the family who watches Colt for us (and has since he started school) and we’ve been chatting a bit this summer. Might actually have her watch him in the mornings next school year and then let the kids take him in the afternoons. If nothing else she’s a great back up.
See how he brings the best people into our world? It’s Colt’s warm heart and beautiful soul that attracts them and makes them fall in love. I’ve never known a heart so warm. Here’s a lovely example from just a few days ago.
I worked late every night last week because I’m on VACATION FROM WORK FOR TWO WEEKS!!!!!!!! (first time ever taking two weeks in a row and first time I’m away from my current job while the rest of them are still there – which will be a living nightmare when I return but for now I couldn’t care less!) I was exhausted by Friday and almost in tears when I asked for, and was denied, a flex day so I could be paid to come in on the weekend to get everything set to go for my two weeks off. I worked for free for a few hours and then, bleary eyed and just absolutely out of energy, I wearily made my way to my car, climbing the stairs to the main floor of the hospital. Because of the nerve issues with my spine, I tend to develop a slight foot-drop when I’m very tired and, thanks to that and my ridiculously dangerous 5 inch wedges (that I am love with and will never stop wearing – well, until I break my neck I suppose) I managed to hook the top step with my stupid floppy foot that came out of nowhere and tumbled, ass over tea kettle, backwards down the stairs. Firstly, with my neck and spine, it’s a bad idea to fall down stairs. Second, and much more distressing to me, I had my phone out so I could tell Dayne I was on my way home. My phone….never mind my body….went flying out of my hand and I heard the most sickening crack as it landed. Not even bothering to see if I was damaged myself, I slid across the floor on my arse to check on my precious phone.
$800 of shattered glass met my devastated eyes.
Eight. Hundred. Dollars.
I am pretty frugal by nature and detest spending that amount of money on anything, ever, however, this phone is a computer to me. It is a music library with thousands of songs I love; a photo album with over 5000 of my cherished photos; is a photo editor that I use on all my photos, camera produced, digital and otherwise. It is my connection to my friends and work colleagues; my access to my blog and my world here; my FaceBook and Instagram and every silly game I play that wastes the hours of my weekends. It is my YouTube that I watch every single night and never turn the tv on. It’s all the things I love to do and entertain myself with…..I even sleep with it under my pillow so it can wake me in the morning with a gentle wake alarm that gets me up in between dream cycles. In short, the only thing I love more than that stupid phone is my family.
I made it to my car before bursting into tears but then sat sobbing like a little girl who just lost her most cherished teddy-bear. I called Dayne and, true to form, he first asked if I was okay and then expressed his frustration at the loss of eight hundred dollars worth of electronics.
“Why was it in your hand on the stairs?” He asked in not-so-gentle tones.
“I was trying, sob, to, sob, tell you I was on my way, sob-sniff-sniff-gulp, and I fell down the staaaaaaaaaaiiiiirs…” I wailed.
“Well. You’re going to have to make do with your iPad until next year when we can upgrade your old phone.” he said.
This made me cry even harder. I started to rationalize the situation and began coming up with ways to patch it together until next year. I mean, it worked fine….it was just a shattered glass screen (why the fuck do they make them out of glass anyway!!!???) and by the time I got home, I had a plan. I was going to buy a screen protector and use it to told the broken glass together and…well….see if it worked.
As I walked into the house, still shaken and puffy eyed, Colt met me at the door. He slipped outside onto the front steps before I got there.
“Look mom. Dad is pretty mad about your phone. He said that we have to get the car in for new brakes this week and we don’t have the money to buy you another damn phone.” Here he eyed me to see if I was going to scold him for the curse. I didn’t so he continued. “He told me that he is saving money to get you a really special present this year for your anniversary and he didn’t want to use that money on a phone (oh really now?!) so, because I don’t want you to be sad, I’ve decided you can have mine until yours is fixed.”
……..He decided I could what?
I totally forgot about the present curiosity. Dayne isn’t a big gift kind of guy….but that totally didn’t matter in that moment.
“Oh honey…” I started but a flood of tears stopped me.
Colt LOVES his phone as much as I love mine. He got my old phone when I upgraded through my plan a couple of years back and he has cherished every moment of it. He doesn’t even take care of his own teeth as well as he cares for that phone. When the WiFi goes down, he is devastated beyond consolation.
“Sweetheart,” I began, carefully choosing words so he would know what a lovely thing he had offered, “You are the most wonderful boy in the world and I appreciate your selfless offer. Thank you for loving me so much you would give up your phone, even for a day, but I wouldn’t take it from you even if I never had another phone again.”
The relief on his face was obvious as he threw his arms around me.
“I’m so sad for you about your phone mom!” he cried into my shoulder, tears of empathy soaking into my shirt.
Perspective huh? He hugged me so hard I struggled to breathe as I explained it was just a phone and that I was perfectly fine without one. I told him it was my own fault for not being careful (had to take the change to throw a lesson in there) and I told him that I was really sad but that he had healed my heart with his love, hugs and generous offer to share his phone with me.
“Mom. I know you would do anything for me and that you always love me, no matter what. (I tell him this all the time and it became a mantra when he was struggling in school, getting suspended every week and was drowning in guilt because he thought he was disappointing us). I know that if I broke my phone, you would share yours with me, so I wanted to do the same for you. I love you more than anything…..even more than my toys, my phone, my movies….even my most favourite ones.”
Seriously? This kid…..I think all the badness I’ve known in life was my quota and his. He doesn’t seem to have an ugly cell in his body.
“Now let’s go in and talk to Dad.” He said, tone turning all serious and mature. “I’ll make sure he isn’t mad okay? If he gets mad, don’t cry or yell, just close your mouth and let me do the talking. Okay?” I giggled and said okay, I’d let him take care of me. (this is the reverse speech I give him when he’s in trouble and we go to tell his dad. Colt is mortified when his dad is upset with him and Dayne feels so guilty it turns into a huge emotional swell that I usually manage to mitigate before it starts).
We bravely walked in, hand in hand, and found Dayne in the kitchen on the phone. He held out his hand to me and when I went to him he wrapped me into his free arm, pulling me close and kissed the top of my head.
“Are you sure you’re okay? Did you hurt your neck?” He whispered while someone on the line talked in his ear.
I nodded against him and then Colt joined in the hug.
“Okay. Yep. Oh that’s great!” Dayne was saying to the person on the phone. “So when will it arrive? Oh wow….okay. Am I ever glad we kept this insurance on the account! Oh yes, certainly…..add it to the new phone as well. Thank you so much, you’ve been a great help!”
Wait what? What insurance? I could barely keep myself from bouncing up and down interrupting his call. WHAT INSURANCE??? WHEN WILL WHAT ARRIVE??? OMGOMGOMG……did we have insurance?!
Amazingly, even though we had cancelled it years ago, we apparently had paid enough into a phone policy that we had one full replacement to claim. They sent me a brand new phone straight from Apple that arrived yesterday. I broke my phone at 630 Friday night and the phone arrived at my door by 10 am on Monday. All I have to do is swap the SIM (done) back it up to iTunes, restore my back up to my new phone and ship the old one back in 15 days. How unlike my life is that?
I sat in a daze for a few days….not really believing it. I figured it would be a refurb or some kind of scam but nope – here I have it in my hands, an exact replica of my old, white, iPhone 6, with all my 5000 photos and thousands of songs. It’s like it never happened. You want to know the best part though?
“Hey mom!” Colt cried when I got home from work yesterday, hopping from one foot to the next at the front door. “You’ll NEVER guess what I have for you!”
“Hmmmm…is it a welcome hug and a kiss from my favourite boy?” I guessed.
“NOPE!” he paused “Well, yes, but there’s something else too!” He gave me a hug and a kiss and then rushed on with his surprise.
He took my hand and led me inside the house where he had carefully set up my new phone and had it all charged up and ready to be activated.
“TA-DAAAAAAAAA!! Look mom! It’s a BRAND NEW PHONE and it’s just for you! Now you don’t have to be sad you broke your old one!”
Dayne came round the corner to say hello with a smile on his face. “He wanted to bring it to you at work but I convinced him to wait so you could play with it right away.”
Even without the phone……I’ve gotta admit, I’m one of the luckiest people I know.
And then to top it all off, it’s now one o’clock in the afternoon and I’m in my PJ’s eating a bowl of fresh blueberries with a smile as big as head. I’m awake, alert, happy, relaxed,
This is going to be one hell of a great two weeks. :)
Such a strange month I’ve had. It’s been a very interesting time inside my head – lol….nothing particularly bad going on in there, but lots happening at once. Thought I’d try to unscramble a bit and rather than writing yet another draft that never gets posted, actually write something I want to share.
The first issue that’s changed things for me is the new diagnosis and medications I’m taking. The narcolepsy meds are working very well and even though I do have to take twice the daily recommended max dose, it seems to be worth it so far. Mind you, they have no idea how this drug works and, of course, don’t know what side effects it may have in the end but it’s always a risk/benefit deal when it comes to medicine. Being awake makes my life much more full and makes it a hundred times easier to cope with the rest, I’m in.
When I first start a new medication I tend to resist it some; I’ll not take a dose one day for no reason other than to sabotage the benefits it brings. I work hard to get around this and I know it’s stupid…..you can either take a drug or not take it but wavering back and forth won’t do anyone any good; I know. Still….. I learned the hard way not to skip my antidepressant and, later in the game, not to mess with the dose of pain meds for the arthritis. Now, after a good long time of consistent doses and use, they are delivering the fullest benefit they are able to and it helps. A lot. The new med is easy to remember to take because when I don’t take them I am hit but a wall of tired. The feeling is nauseating and has a vertigo-effect on me now…..the feeling when the tired starts to creep up behind me. If it happens I’ll instantly realize the cause and take my afternoon dose and within an hour I’m back to where I was; awake, alert, engaged and enjoying life again.
The only down side of this change for the overall better is that being awake for normal hours has set my dream issues into overdrive. The specialist said this might happen – she says I have an REM disorder along with the narcolepsy, although they two are likely one and the same. A rapid drop into REM sleep is part of narcolepsy; however, the inability to move into deeper sleep cycles and to stay ‘stuck’ in REM most of the time I’m asleep does not quite jive with the diagnosis. No matter what it’s labeled, it’s a pain in the butt and the specialist wants to treat the symptom with more meds, which I expected. Although I generally only sleep 6-8 hours a night now (yay!!) I think I dream as much as I did when I slept 16-18 hours, just all packed into the shorter time frame. The dreams are vivid, constant, cyclic and repetitive in nature and theme. I’ve been talking/yelling/laughing/crying and walking in my sleep every night and I do not stop for hours, Dayne tells me. I’ve been having dreams of waking up to find myself in a strange environment I don’t recognize and although I now something is very wrong, I can’t figure out what. I’ll start to adjust to my surroundings and something will shift and the scene will melt into something else and I’ll think I’ve woken up again…..it goes on and on until I either wake for real or Dayne wakes me. It’s not frightening but it is very disconcerting and disorienting. One very recurrent theme of late seems to centre on destruction and loss of control and safety. I’ll keep this short…
On the weekend, I dreamed I was on a bus that was driving down an open highway somewhere in a desert. There were two dozen of us, or so, and one driver. The world outside the bus windows was all the same colour as the wind kicked dust into the air all around us. There was absolutely nothing out there to break the wind as it roared on through. We approached a small town but I could tell from a long way off that the place was abandoned and most of the buildings had crumbled to the ground. It didn’t look like a disaster site; no bomb or man-made annihilation but it also didn’t seem to have been destroyed in a natural disaster like a storm or earthquake. Everything simply seemed like time had passed without anyone tending to the small cluster of buildings and grounds and the place was crumbling away and joining the dust that swirled to the skies.
“Where is everyone?” I asked, many times, but kept getting hushed by my fellow passengers.
There was someone or *something* out there that had taken everything from us and we, as an entire species, were left cowering in corners of the world, trying not to be seen. The bus was in constant motion which was the only way we seemed to be safe. Somehow, whatever chased us could not see through the metal frame of the bus. I suddenly understood why everyone was lying face down on the floor and joined them, quickly.
We moved about the bus on our bellies, slithering like snakes to avoid being seen and destroyed on sight. I crawled using my fingers and toes all the way to the front and asked the driver where we were headed. He said he didn’t know; all he knew was that he could not stop driving because anyone who had, was gone; vaporized into nothing by unseen enemies.
“Is there anyone left on other continents?” I asked, almost silently. “There must be someone left somewhere…”
No one answered me but I was glad. I didn’t want to hear the answer. (end dream)
The dream started like that and a scenario would play out and I would die, or worse, cause the death of everyone else on the bus. Every time I failed I would fall to the floor where I stood and feel the life draining from my body, no longer afraid but so very sad. Then, a crack of light would appear before my closed eyelids and I’d open them to find myself alive and well, belly down on the floor of a bus, crammed in with strangers who were all waiting to die. I can’t quite explain how emotionally taxing that can be after the 10th time through. I’m usually kind of against taking anything that will make my dreams stop…..they are so much a part of my life and always have been so not dreaming feels like a sort of death to me. Now, however, I would happily let these cyclical, exhausting dreams rest awhile and do nothing while I sleep other than rest my body and soul. So, there’s that. So far the doc has only tried me on Klonopin, which I’ve taken before many times and although it worked wonders for the anxiety that used to chase me around, it did nothing to improve my sleep. (Not entirely true – they do make me drowsy but I’m plenty drowsy on my own without adding more. Plus, they don’t even touch the dreams. I’m at a much higher dose than I was for anxiety so I told her I’d give it a try. Nothing so far….been taking them for 2-3 weeks each night).
There. I’m going to stop there and post this before I get lost in something else. I have more to write out and really need to get some stuff out of my head, but I’ll post now and add more later. I have two weeks vacation coming up and I need to get myself in order at work so I’m only desperately behind and not crisis-level behind before I leave.
Hope everyone out there in blog-land is in a happy place today. xx
So the new med seems to be helping….I haven’t quite got it settled in me yet so I’m finding hard to judge but I’m definitely more awake taking them. They seem to take about 1 hour to kick in and then I feel awake….not wired or jittery/anxious…for about four hours. After that I nosedive back into tired and fight to keep myself awake but if I take a second dose the same happens again. Today, I’m going to take three doses, metered out, and see if I can avoid the crash but they are definitely helping some, which is fantastic.
The appointment on Friday was actually really good. The doctor was efficient, kind and very interested in helping me get my quality of life back. She went through all the results and showed me baseline results against my own to help me understand. All of the blood work came back as expected – fairly normal. The cardiac testing, oxygen saturation and other diagnostics came back well within normal ranges as well, which I was also expecting. The sleep study and latency testing showed a very disturbed sleep cycle where I nearly instantly reach REM sleep (normal range is after 90 min of light sleep) and stay there for a large portion of my cycle. I do get to deep sleep, the most restful, healing phase of sleep, but I spend between 2 seconds to 2 minutes there before bouncing right back into light sleep which quickly progresses to REM again. (This is all consistent with the studies I had as a child). I don’t actually wake up, which is good I think…..and shows that it’s not the pain in my spine that is interrupting my sleep so I don’t have to up any of the pain meds for now (yay!).
In the end, her preliminary diagnosis is narcolepsy as I clearly have most of the markers aside from the cataplexy (when a sudden emotion like surprise causes a ‘short’ in your nervous system and you collapse – the symptom most people recognize in conjunction with narcolepsy). I didn’t think I’d had any episodes of sleep paralysis (where you wake but cannot move for a short period of time – some sort of miscommunication between your brain and your body) – but after describing some of the episodes I have had in my adult years where I would feel like I was stuck in a very vivid dream had the doc nodding and checking things off in her notes. The two main markers I clearly have are the excessive daytime sleepiness and the rapid descent to REM upon falling asleep.
Because I can pretty much point to these sorts of symptoms all my life, I asked about why it might be worse now than it was when I was younger. She said that things like menopause can trigger differences in just about any disorder of this nature and my GP noted in the referral that I started with the peri-menopause crap right at about the same time I started with the consistent overwhelming exhaustion. The other thing she said that I found interesting but did not comment on (to her) was that sometimes psychological trauma will trigger sleep disorders. The dreams have never really perplexed me, particularly that they began in childhood, because of the traumas that happened in that phase of my life. I actually thought the dreams were mainly a part of the PTSD…I mean, how much sense does that make? Emotions and memories stored in jagged strips in my head that don’t process correctly when I look directly at them would be very likely to process through my subconscious mind right? Makes sense to me anyway and it appears that the two really can go hand in hand.
So what now? Now I try this stimulant to see if it makes me feel any better for a month and then, if needed, add a sleep med. The clinic is going to follow me until we have some sort of treatment routine that works so I feel like I’m in pretty good hands. Now it’s a matter of coping and shifting things around a bit to make it easier and I’ll be set.
I finally feel like I might be able to get things back under some sort of control.
Depression? Check. I have pockets that come and go but, on the whole, I’m managing to keep myself from sinking too low.
Anxiety? Check. I’ve been great on that front for a while now. The only thing that seems to set me off is going to a very busy place like the farmers market on weekends. I can only do so long before I start feeling like I need to fight my way out, biting, kicking and wind milling my arms to bash through perfect strangers to get some air. Maybe one panic attack on Friday with the puking, sweating, violent shaking, heart pounding and head screaming but it might also have been one of the headaches I get from the mess in my neck and spine.
PTSD – Check – no actual flashbacks for years now. Some behaviours are still with me and likely always will be but I’ve learned to slow the self-sabotaging talk cycle when they start and I seem to be able to bounce back within a day or two at worst. The rest of the related behaviours and thought patterns are just part of who I am and I will always be working to support myself through them.
Arthritis/chronic pain – Check. I’m getting very good at living with this crap and it is only getting to me once in a while, at which point I will immediately take the required meds, grab a cold pack and let my body rest until the worst of it passes. I haven’t called in sick from the pain once in the last 8 months and I’m proud of it. I’m also not suffering and constantly thinking about it or how to fix it. Pain follows me everywhere now but I’ve come to accept her as part of my life and I find myself much less burdened.
Sleep – well….I think I’m on my way to having this in check too. I’m excited. I feel like there’s a chance to see the old me again and it feels like being released from prison. I can’t think of anything I would have wanted more.
I’ve gotta say….that one was definitely well worth the wait. \(^V^)/
So the outcome of the appointment was pretty good. No respiratory issues at all, which was a big *whew*.
The study showed a substantial sleep disturbance, as expected. The doc thinks narcolepsy is what I’m looking at as I have two of the main markers: excessive daytime sleepiness and a very rapid transition into REM cycle sleep. Most people take about 90 minutes to enter REM and I would drop into within seconds of falling asleep. I do not have the cataplexy or paralysis that occurs often with narcolepsy but she said that the disorder presents differently in people. She’s treating me for naecolepsy and I have weekly follow up appts to see how the medication is working.
I’ll wrote more in depth info later as I’m out running errands now but wanted you guys to know I was ok.
Stay tuned. Thanks for all the love and support my wonderful blog land friends. Xox