It’s ok not to be ok

TRIGGER WARNING: this post talks about suicide, please only read if you have the emotional currency to.

Before you read further know that I’m ok.

When I got my clinic notes last year and read through them the emphasis was to “fix” because my mom was worried about how other kids would see me. It wasn’t about teaching me how to cope with my facial difference it was about teaching me we needed to fix my difference because of how other people see me. I blocked out so much of my childhood, I have no doubt there were some peers of mine who did treat me ok.

I don’t remember any adults sitting me down telling me it’s ok to be angry, sad, frustrated or scared. I learned from an early age what it meant to just get on with it and not complain. I stopped telling anyone about what kids said to me and we as a family NEVER talked about it or talked about what happened when we went out in public. I’ve written before about how when in public my mom’s solution was to force me behind either her or my sister and put my head down. I remember protesting this on a number of occasions but eventually just gave up and started doing that all on my own, still do. One of the lasting impacts of my childhood is my inability to hold my head high in public. I walk with my head down, it’s hard to hold one heads high when one is met with stares and points in your direction.

There have been times in my life where my self esteem was so low that I didn’t know why I was even here. Why would I continue when no one liked me, no one wanted to be my friend. Why continue to be a part of a society who saw me as nothing more than a throw away character undeserving of love.

All I heard from peers was either silence or menacing comments, day in and day out. When I got home I had no one I could talk to, mom worked and told me to just ignore them, my sister tried and always came to my defence when she could but at some point she too just said I should ignore them. No one understood what was going on in my head, no one asked, got the impression that no one much cared. I never got to any kind of formal planning but I did have thoughts of suicide, I thought about best way, thought about what I would write in a note. I never formulated anything outside my own head, I never dared to say it out loud, my mom used to call people who killed themselves cowards. One of the big things that ensured the thoughts stayed as thoughts was my mom and my sister. I thought about someone having to tell them, of how she had been through so much and lost so many, how could I do that to her. I have wrestled with those thoughts and how it would play out on and off throughout my childhood and teenage years, it has been a long while since I’ve had those arguments with myself but they too have made a lasting impression.

Having a visible difference wears on a person, as I got older I got really good at hiding my feelings and never shared with anyone how I really was. Even now on my bad days I’m “fine” because what choice do I have?

Like everyone, I have a family to provide for, a house to upkeep and bills to keep on top of. In some cases this is what keeps me going. One foot in front of the other, it’s been how I’ve lived my life and how I will continue to keep on going.

I understand and it hits me deep every time I hear that someone has taken their own life. I understand when loved ones say “we never saw it coming”, because they didn’t. Not all people who suffer do so in a way that you would ever begin to imagine, in a way that you could see, or even prevent. I think as a society we are getting better at knowing this, but there is still a long way to go. Almost everyone who talks about suicide will always say “just reach out to a trusted person” or wonder why someone didn’t. I don’t think I can find the words to help you understand why that isn’t always an option. There won’t always be “a cry for help” there won’t always be a moment where YOU could have made a difference. I found a tribe online, on twitter where I know I can say the smallest thing and they will pick up on something I might not even know it came off as that. I know that if one of us doesn’t post for a day or so we are demanding a check in, just to make sure we are all ok, this tribe is something that I fell in to and it has become my safety net. Please note I KNOW I have a lot of real life connections that I know I could go to I know there will be lots of comments and such of my amazingly awesome friends that reassure me of this, and I love all of you for that.

If you’ve read this and you have felt that I have spoken your truth, know now that you are not alone. I know that on those dark days the words “you are not alone” are shrouded in darkness and seem so, so far away, I can only ask you to stay, because I need you to.

#CraniofacialAcceptanceMonth

When it rains it pours

I’m exhausted so let’s talk about the every day struggles around $$ shall we?

Daka and son Dorje

Today I took 1.5 hours of unpaid time off to take our three crazy dogs to the vet. Typically I space out their visits so that financially it works. But we were a tad on the desperate side. See we have used a mobile groomer for well over 6 years. She was awesome, came to our home and took loving care of our three pups. We had her come every three months. Our pups DO not like car rides so any way we can minimize that the easier for all involved. When it came time to schedule their grooming appointment we didn’t get the email out to her before she went on vacation. So as soon as she was back we emailed her, no response. Emailed her again, nothing, called her, no answer and didn’t return our messages. So pretty much after over 6 years we were ghosted by our groomer. So the race was on to see if we could find another mobile groomer. Amazingly they don’t exist, We had one promising lead, but again she decided to also ghost us, cause HEAVEN forbid people just say words to convey a message…..ugh. With the requirement (correctly) of up to date vaccinations we hauled our butts to the vet where I shelled out $822! I love my dogs and it’s not about the money but DAMN there goes the cash I was holding to fix my fence.

LtoR: Dorje, Daka and Ellie. Relaxing after stressful visit to vet

My fence in case you don’t follow me on the social media (Twitter: @PLoker) half fell down. Year or so ago a section of it started leaning heavily but we managed to prop it up. Well earlier this year during an intense wind storm that sucker flat out gave up. So like anyone, I waited until the weather was nicer and I tried to get quotes. I tried, and tried and tried…. I’m confused, if you run a business for anything why is it when people contact you about said anything don’t you use words to convey thoughts? Mainly “super sorry can’t fit you in this season or come out for a quote.” That would be helpful, you know what’s not helpful, just ignoring the people who want to give you money in exchange for doing the thing you created a business for! So after FINALLY getting three quotes ranging from near $10,000 to about $4000 I went with the middle guy who knew budget was a concern. We agreed to only do the one side of the yard for which he quoted me $1600, reasonable. Neighbour I share the lawn with agreed to pay half. Neighbour didn’t find anyone to give quotes or expressed any desire to provide any funds upfront. Cool, all on me, gotcha. Dude asked for $1000 upfront for materials and such, he came, I liked him and his wife. Lovely people. He has some health issues so there started to be some problems….long story short it’s turned in to one of those HGTV horror stories where I’m out $1400 (gave $400 to do my front garden) have a pile of warped wood in my backyard, 6 x 30kg (60 pounds) bags of now garbage concrete and a sour puss dude who refuses to refund me my money.

Bye old fence. Well not by, dude just left this mess!

I also need to re do my driveway, roof, front and side door cause in the winter you can just push my locked door open…that’s safe. And my biggest expense project I can’t get done, my basement which flooded a lot and now has mould.

So needless to say for all those who also bring home the bacon to support your families I GET YOU! You are not alone even though it feel like it. Cause all you want to do is buy yourself some pretty socks but you can’t cause that money needs to buy your family food. Maybe there is a reason why my BP is through the roof lately. LOL 😭

I hope this post doesn’t come off as whiny, I’m really tired cause I don’t sleep much and I’m just trying to put one foot in front of the other. Also my moms PSW is out for two months and we might not get a replacement so those 6 hours my sister used to have to go get groceries may have just dried up so will now have to figure out how we manage bathing mom and getting stuff done after my work hours. Monday’s my sister and I would go out together the only two hours a week we had to spend outside the house with each other. Wednesday’s my sister still gets respite, imma still holding down the fort and working.

What are you struggling with lately? Let’s support each other. Also have I told you that September is Craniofacial Acceptance Month?

With this brush, pencil, marker, I thee art!

“Creativity takes courage” – Henri Matisse

Shout out to Barbra L. for today’s blog post topic, art, my art.

“Pavement Daisies” photo taken by Penny Loker

For as long as I can remember I’ve always had access to crayons, colouring books, and paper. We were dang poor but this is one thing we had. One of my fondest memories is just spending hours colouring with my sister. it was always something I enjoyed doing. Just playing with colours, drawing. It wasn’t something I did consistently.

“Alone” Drew by Penny Loker 2019

One of my favourite classes in school was art. High school was the first time I thought I might be good at something. One time in English class we had a project where we had to do activities from a list regarding a book we were reading. I don’t remember the book but I remember spending a lot of time creating a map of where the book took place. I was SO proud of what I had done, it was SO good. So good in fact my teacher asked if he could keep it. I let him.

“29 fallen stars” painted by Penny Loker Aug 4th, 2019

As I got older, and life happened art was something I got away from.I still doodled but nothing more. In the last 6 years I’ve found a lot of happiness in creating art of all kinds. Whether it’s drawing, doodles, painting, playing with clay or more recently digital art I find myself able to channel stress in to my art. I find comfort and community.

“Spacing Dreams” painted by Penny Loker May 6th, 2019

Art can mean and be so many things to so many people. I love watching other people do their art and love just looking at art. I don’t have a process or any specific techniques. A lot of times I get an idea and I’m compelled to make it happen. Most times it really doesn’t turn out as expected a lot of the feedback I get leads me to think I’m doing a decent job. There are some pieces that I look at and I can’t believe my hand created them, both the good and the bad, lol.

“Summer Storm Brewing” painted by Penny Loker March 20th, 2019

I love taking awesome photographs, and just letting my feelings out in any medium I can. I’m glad that art doesn’t have to be done with the most expensive of tools. If I could create art all day and make a living I would. I would love to have a dedicate art space.

“Flower in the storm” created by Penny Loker

Art is a kind of hope, for me. I hope so much when I do the art that most times it’s exhausting. What are some of you favourite artists?

Zentangle drew by Penny Loker

All of the art work pictures are all available for purchase. If interested please send me an email and we can review pricing. I will explore this topic in future posts. When I do what are you interested in knowing about my art?

Adventures ahead

A friend of mine approached me a few months ago asking what I had planned for next year. The answer is SO easy, big fat nothing. Being a caregiver and the person who brings home the bacon doesn’t leave me any energy or the ability to just go on vacation.

He has such a great idea and I’m stoked about it. I can’t wait to go on this adventure and for those local I have good news, you can come to! What we are planning is a motorcycle trip either our west or going east. Think my vote would be east. I will 100% NOT be on a motorcycle but in some type of RV. What my hope/dream is as I write this, is to get as many sponsors as possible and try to raise a bunch of money for charity. But also to take my family with me. We haven’t all been on a proper vacation in more years than I know.

The biggest obstacle right now is trying to find the means to rent a giant wheelchair accessible RV so that my mom is comfy, and has access to a bathroom. My plan is to vlog/blog and do other crazy things along the way to fundraise for both AboutFace and Sick Kids Hospital, if I’m super amazing lucky I’d like to add Grand River Hospital to the list.

This adventure is still in the early stages of planning. There isn’t a specific date set, I haven’t secured any sponsors or even have any clue HOW to do that. If anyone knows how best to get sponsors or may be interested in sponsoring me, hit me up!

I’m putting this out in to the world to bring good vibes and luck my way. Typically when I look forward to something it never happens but I hope this will be different.

Remember September is Craniofacial Acceptance Month, I aim to do a blog post every day this month and thanks to some really great suggestions I’m well on my way. If you have an idea for something you want me to write about, leave it in the comments!

TTYAT (talk to you all tomorrow)! ❤️

Craniofacial Acceptance Month

Acceptance, not awareness, that’s a difference between this and other month long campaigns.

I don’t know when or why September was chosen to represent Facial Difference, but since it’s my birthday month, it works.

Campaigns for cancers and loads of other illness will label their campaigns as “awareness”. They raise money to hopefully forever get rid of whatever it is they are raising money for. There are some exceptions, but not many. One of the giant exceptions is for those like me, with a facial difference. No amount of money is going to fix my face. Organizations like AboutFace, CCAKids, Changing Faces and Faces all raise money to help kids, teens and adults deal with having a facial difference. Because as far as we think we’ve come, it’s not far enough.

Each day kids who for no fault of their own are bullied, shunned, and physically attacked simply because of how they look. Every day teenagers flip through beauty magazines and see perfect faces staring back at them. And every day adults like me attempt to use online dating sites only to be told “no one wants to be with someone who looks like that.” The money raised by these vital organizations goes to programs to advocate and help those with facial differences navigate the world around them. We spend a good chunk of our lives teaching others how not to assholes. This still is insane to me, because we shouldn’t be a teachable moment. We shouldn’t have to answer constantly “what’s wrong with your face?” We shouldn’t worry about how much going out is going to cause us anxiety. And parents of newborns with facial differences shouldn’t have to worry the pic they post will be reported as “violating community standards”, or have to see comment saying that their child should never have been born, ALL because of how they look. This is INSANE to me, I can’t wrap my mind around it.

I know what it’s like NOT have a facial difference. I know because it’s all I see. In my everyday life, media, books, everywhere I’m bombarded with what it’s like to navigate the world without the added complexity of looking different.

When I get asked if given the choice not to have a facial difference the answer depends on the day. What doesn’t change is that I wouldn’t change WHO I’ve become because of my facial difference. But most days I’d love to know what it’s like to go out without a facial difference.

It’s all a matter of perspective

“You’re such an inspiration.”

“I don’t know how you do it.”

“When I’m having a bad day I just remember what <insert name here> is going through and realize I have nothing to complain about.”

“I shouldn’t complain, there is always someone worse off”

You’ve probably read these few starting sentences nodding to yourself. Agreeing with them, or have uttered them on a number of occasions. I’d be lying if I said I never have, I have. I wish I could go back in history and stop myself. I know one thing, future self won’t say them. I’m writing this in the hopes you also will reconsider those words in the future.

I have heard these sentences directed to me on more than one occasion. More so recently for some reason. I’m not a saint, I’m not an inspiration and I’m 100% NOT a meter stick.

Every time you compare your hardships to those going through a difficult time, or are living with a difference it doesn’t accomplish what you think it does. Let’s look at just the examples below. As I write this I will try to be as well rounded at seeing both sides as I can

“You’re such an inspiration,”

I’ve covered this one before. When I think about the other side of this one, I know that it’s not said with any malice. It’s said as a term of appreciation for the strength of character, determination, and drive that person is showing in the face of adversity. This one is very universal in its application, said to literally anyone going through a giant life altering struggles or perceived struggle. A lot of times it’s said about people we don’t even know.

How it lands is that you are praising me for simply existing. That fact that I can do the same mundane tasks as you; like doing dishes, paying bills or taking out the trash, shouldn’t elevate me on to some pedestal to be admired just because I do those tasks with a difference. On the other hand if my choosing to share a story inspires you to do good, donate to a charity, or be less like an asshole, I’m ok with that. What my ask is, think about WHY you say/said this, try to be more specific with how you are feeling. If the reason why you are saying this is because my struggle or existence makes your life more shiny or tolerable than maybe you need to have a deep thought session and reevaluate things.

“I don’t know how you do it”

This one when said can go either way. When I hear it from loved ones I know there is no ill behind it. This is not one I’ve said to another human so am struggling a bit to be on the other side. Every time I hear it it always hits me with a negative connotation. Like “I don’t know how you do it, looking like you” or “man, I don’t know how you do it looking after your <insert loved one here>”. I know my friend who has twins got this question a lot in the first few years of her becoming a mom.

This sediment is often used as a meter stick to ones own life and struggles. It really only serves to devalue not only those it’s directed at but the individual who utters them.

As the one who gets it directed at, here’s the thing. My life, struggles, hardships, or wins (lol) are NOT a meter stick for which to measure yourself on. Just because I’ve had to deal with one thing after another after another doesn’t make me an inspiration any more than it makes me unlucky. I share my life and struggles willingly not out of some need for vanity, or for validation that I’m living up to what you feel I should. Rather I share my shit show of a life to be a part of a greater community, the human community. I share my struggles with living with a facial difference not to gain your pity, sympathy or even empathy but rather to normalize looking different.

“When I’m having a bad day I just remember what <insert name here> is going through and realize I have nothing to complain about.”

I would say this one seems a lot more prevalent in recent years. Another one who’s intentions are rooted in good soil but end up in a bad place. Yet another meter stick. Another one I struggle to see both sides of.

Why is it ok to feel better about yourself or your life after thinking about someone who is struggling? Whether that person be rich, poor, famous or infamous, their life is not ok to use as a crutch to make you feel better.

“I shouldn’t complain, there is always someone worse off”

Related a bit to the last one, and the one I heard most often by those saying it to me, when I voiced fears. The one I internalized and said not only to myself but to others. When I said it it was to give me strength. I said it because I thought it meant that I was honouring those who maybe had struggles greater than me. If I could get through that day, that procedure, that minute I would be better off. I was oh so wrong.

I’ve learned that it’s not ok to belittle your own struggles, fears or feelings not matter how small they seem to you or others. It only serves to give you a false sense of security instead of dealing with what you are going through. I get we humans tend to be competitive but this is not an area where the strongest or weakest are at odds.

I hope that writing this it doesn’t come off as preachy. I know I’m not the first one to write this sort of thing. I love to let you all in to my life but I also share things in part to help me process my world. I don’t always need a solution, suggestion, or comment, what I need it to be heard, to exist sometimes outside of my own head. Hopefully one day those with differences of any kind are given level footing.

Still here, day 17 of bleeding.

Written on Thursday June 27th, 2019

So it’s been 3 days since I wrote my last post, since I saw the nurse practitioner at my doctors office. I had bloodwork which came back quickly, the office hasn’t called so I’m taking that as a good sign. I can see the results and there are no flags but I’m not able to fully grasp the picture it’s painting.

The other test she has ordered is a transvaginal ultrasound. If that doesn’t sound fun to you I’m in agreement with that. I’m not looking forward to it. I googled it extensively and found that it will not be pleasant. The lady who booked it said I have to drink 1L of water about an hour before hand and hold it in. I can assure you that will NOT be happening. I will drink what I can but 1L is impossible with out me vomiting it up or peeing my pants on the way there. They are so booked up that I can’t get one until July 12th with my follow up being on the 15th. That means these posts may go live at that point or may just get deleted, I’m hoping for that.

I’ve never been ashamed of having my period, I never openly talked about it outside of talking with my sister but in recent years I’ve followed in some amazingly awesome women’s footsteps. When I’m at work and have to change my pad, I don’t hide it, I carry it out in the open. I’ve openly told co-workers that I have it as a reason why I I’m feeling shitty that day. I’ve told both male and female co-workers, I don’t care! If a guy doesn’t know that this happens to women by now, not my problem. I will not be ashamed, I will be honest.

The following was written on Sunday June 30th, 2019

I feel like I should start these posts with a star date as if we are in the Star Trek universe…lol

I’m still bleeding so it’s day 16, that’s nuts. I’m uncomfortable to the point if I sit in an desk chair for long periods of time I start feeling sick. I hope that symptom is all in my head.

My sleep seems to be fairly normal but my appetite and how much food I can eat seems to be low lately. Also I’m peeing a hella much. I used to be able to go a crazy (most likely unhealthily) amount of time between feeling the need and actually peeing. Now I not only going more frequently I can’t seem to hold it as long.

I’m trying not to think of the worst but that’s always where my thoughts go to. I have a brain tumour for heavens sake so ya know… thankfully that has turned out ok-ish (so far).

I think about past lives and think I must have been a horrible person to explain all the crap I’ve had to deal with in this life. But then I think about how much easier for me it will be to be the one going through it, whatever it might be. It would be so much harder if it was my sister, or my mom going through any medical crisis, but I’m a seasoned pro. My brain also thinks that after all the testing and what not nothing will show up and the doctor will just shrug it off and I will just have to deal with it.

Written July 1st

Random thought: how can my body still be bleeding FFS? Seriously 17 days straight, morning, noon, night…where the hell is it coming from? Between the 11th and 14th day it got quite a bit heavier but has gone back to the flow rate of what it was on day 10. Still there, but heavier than what a light days pad could handle. Day 17, wow…

Don’t mind me, just bleeding here!

Written on Monday June 24th, 2019

I’m on my way to the doctors. Pretty nervous. I don’t want to write this. I hope with any luck this post will never see the light of day but if your reading these words it’s not great.

Editing this on June 30th: I have ZERO results but posting anyways because like most things I do, I want to make sure others don’t feel alone, including me! So I’m posting this and that’s that. Some of you reading this already know, I love that you listened, gave me advice, and tried to make sure I didn’t over think (Thanks Kim <3}. To everyone else reading this, I’m ok, well emotionally I’m ok I’m on a roller coaster and just hanging on for dear life! Ok that’s a long edit message. On with the post!

I always said if I faced a big health crisis I wouldn’t ask for help. I would tell as few people as possible, put my nose to the grind stone and just deal with it. But recently a saw a video from Simone Giertz who had to under go weeks of radiation treatment for a brain tumour. Watch this video of hers Time stamp 8:50 but just watch the whole thing. She said she was like me in terms of not wanting to ask for help, but what she said next has stuck with me. She said that when she did everyone offered to help, so instead of dreading her treatments she looked forward to spending time with that given friend. That is such a bright thing to say and I hope if needed, I do would the same.

But kind of getting ahead of myself. WARNING: The following deals with monthly cycles so if this is not a topic that you are comfy with, stop reading.

For the most part like most women my period has been its own thing, different from others but stable for me. When I was really young I went for extensive hormone testing where I remember hearing that they didn’t expect me to go through puberty at the age most girls do. They figured probably 16 or later and/or with the help of drugs. Well they were wrong and January after turning 12 I started, just after gym class, the whole school some how learned, it wasn’t a great day. But since then I’ve gotten it every month, twice in the month of June when I was 16. I have a set cycle (as most women do) I get any/all the PMS things, it comes light at first, heavy for a few days then light again for another few days. I get cramps, most of the time they are brutal, I get migraines, and such. Afterwards about a week later I get discharge for a few day to a week. Typically I get a week or two at most per month where I’m not dealing with some aspect of my period. But that’s always how it’s been, that’s me, I’m ok with that.

Earlier this year things started to change. I started to spot the tiniest amount between periods. I didn’t think anything of it at first. In early April (on time_ish) I got my period, seemed normal, then 14-ish days later I got my period again. Figured maybe it was a one off, just changing cycle dates, no biggie. I got more spotting, but so tiny that even though my brain was screaming “THIS IS NOT NORMAL” I ignored it. After that and 19 day after the start of the last one got it agin and 20 days later again, and 18 days later again. This brings us to June 14th where things changed again. This flow was/is NOT a flow at all, it seems to be a slow drip a few clots here and there but nothing else. Enough for me to wear a light days pad, too much not to wear anything. I’m on day 10 haven’t had a period last this long since I first got them.

So I’m heading to the doctor with fingers crossed I will be able to delete the words I’ve just written. But only time will tell.

Like ever other fool I know, I’ve used Dr. Google and I’ve narrowed it down to 4 things.

1) pregnant ~ Nope

2) premenopausal ~ maybe, I am 37 so not unheard of

3) ovarian cancer ~ lord I hope not but the symptoms fit.

4) stress ~ ok this could be a thing but my stress level hasn’t drastically changed. Been stressed every day for the last 6 years. Doubt it caught up with me now.

Needless to say out of these I want it to be stress cause I’m not sure which of the other ones frightens me more. But until after my appointment I won’t know what I’m in for. And most likely won’t know even then..

EDIT:

Well I’m home, it’s been hours since I got home. I had a great conversation with the nurse practitioner about my issues. She has ordered bloodwork and a transvaginal ultrasound. I’ve done the bloodwork, having some medical knowledge I know what she is testing for.

She has agreed that what I’m going through isn’t normal. The two possible things she verbally told me it could be is something called fibroids or I’m pre-menopause. Makes sense and honestly hope it’s one of those. The bloodwork she wants is testing for tumour indicators in association with ovarian cancer but did not order CA-125 test so I could be wrong.

Like I said at the beginning I hope I will be able to delete this and you have not read a word of this.

written June 30th: clearly I posted this, let me stress I’m not looking for sympathy, or pity. I’m good at throwing my own pity parties and they are exclusive events you are not invited to. I’m just writing this trying to make sense of it, process it, and maybe someone else in the future going through this will know they were/are not alone.

Mother’s Day (a caregivers perspective)

First off, I hope all the moms who read this have an amazing day!

Happy Mother’s Day

I grew up in a single parent household, my sister and I had our mom and that’s it. To this day pretty much the only family we have is our mom and each other.

As a kid it was fun to make crafts at school and give the, to her. As we got older friends of hers would give us a little money and my sister and I would go get something we thought was neat. I remember one of those shopping events where we went to Eatons and I remember having NO clue what to get her. My sister picked out this very cute silver dog statue thing and I remember being so mad at myself so frustrated I ended up getting what was probably the worst gift I’ve ever purchased. I got her a big sponge in the shape of a watermelon slice, not a wedge slice but half a watermelon shaped slice. To this day we still have the dog statue somewhere but the sponge is LONG gone, sadly my feelings toward it, not so much.

As an adult I think I know why I was so frustrated even if I didn’t know then, I didn’t know my mom. Like really know her, didn’t know what her favourite colour was (actually still don’t), didn’t know what her fav food was (again not really sure now), wasn’t sure what she was in to or liked to do in her spare time. Observations helped as I got older, I learned what she didn’t like in terms of food, and clothing, learned that she really did love jewelry of any kind as long as it was pretty, she loved music and hockey.

My mom and I have an odd relationship, and I guess we always had. I don’t consider my mom my best friend, nor someone I could/would go to for advice, not someone I could/would share my deepest secrets or desires with. Please don’t misunderstand me, I LOVE my mom but her and I have never really been close. She tucked me in every night and kissed me on my forehead and those are the moments I cherish most.

When I was old enough to get a job it seemed our roles reversed. I didn’t feel like I could go to university or collage, she never encouraged us to do well in school, as long as we passed or just made an effort it seemed to be enough. She didn’t want us to leave her all alone. So I got a full time job and started paying some of the bills. She spent my money as she did hers, and I let her. But we never ever talked about our feelings. I equate talking with my mom to talking to a brick wall, get pretty much the same results, it ain’t easy.

As I made more money her demands for more and more expensive gifts (for all holidays, Mother’s Day included) were the norm. I couldn’t just get her a card and some flowers and feel as if she would truly appreciate the thought and the sediment. I could never write mushy notes on cards and watch her tear up with absolute joy and pride.

Now as my sister and I are her full time caregivers the lack of appreciation is something that is thread throughout our daily lives. In small comments and big outbursts my mom displays. It’s exhausting.

My mom had a rough go at life, she never had great examples of how to be a loving mom, or a truly caring mother. And I get that, I love my mom and I’m sad with how things turned out.

I see the posts from others praising their mom, hearing how their mom is their best friend and that they could go to them for anything and I get so jealous and angry. I never had that and I want it!

I think I’m writing this because I know I’m not alone. I know that Mother’s Day is hard for a ton of other people. Not because their mom has passed but because their mom is here but was never really there for them. I want to write this not to shame my mom, but to put my complex thoughts out there in the hopes it resonates with others. I know that my mom felt she did the best she could do and doubt she would not go back and redo it and I’m ok with that. I’m happy with the person I am because of her. I did learn a ton from her, May not be what she had intended to teach me but learn I did.

Mother’s Day like most things we celebrate isn’t all sunshine and rainbows. It’s ok to be sad and ok to try and process your feeling for your mom without guilt and shame.

Sleep? What’s that?

I’m exhausted, I always have been. I have never (for real, not an exaggeration) had a restful nights sleep. I don’t know what it’s like to wake up, get out of bed and not feel like I need another 6 hours of sleep. When I was a kid the first thing I did when I got home from school was crawl in to bed and take a nap, this continued until grade 7 or 8 or high school, I’m not sure.

I can at any point lay down and fall asleep. Fun times.

I would imagine a good portion of those reading this will be like “ME TOO!” We are kindred spirits you and I.

In addition to this I snore, like a really big chainsaw. This also has happened since I was a kid. As a 30-ish pound under 4ft girl I could snore as bad as a guy over 6ft whatever he weighed. I’ve kept my poor sister from sleep any number of times. I’m told I can be heard through walls as well as on multiple levels of a home.

Most people would assume that because of the snoring they would have some form of sleep apnea. As a kid I was never told this was something I needed to be worried about and my mom didn’t pursue this as a something that should be looked in to.

I’ve had now three sleep studies and they all have pretty much determine that I don’t have traditional apnea. At no point do I stop breathing while I sleep. That is both really good and really frustrating. You hear a lot of people who search, and search for a diagnosis express relief at finally knowing what is wrong. Even if it’s bad, they have something tangible, can take the next steps. So although I’m glad I’m not at risk of dying in my sleep I’m frustrated that I can’t have that as my answer. Not sure why I’m at all surprised, that’s been my norm, to be so far from norm. The phrase my sister and I always say, that seems to be our mantra NOTHING IS EVER EASY. Ever, for us.

What I did learn is that the mechanism that exists for those with apnea is the mechanism that I’m experiencing. Essentially what that means is that for those with apnea they can get a CPAP machine and/or make some lifestyle choices and they will see a huge improvement in their quality of life. Because my problem isn’t tied to that the solution isn’t as quick and easy. In fact as I write this I don’t know what the solution is. I am trying the CPAP machine and at the very least it’s giving my sister a much deserved break from hearing me snore but other than that it’s doing squat.

The mechanism I’m talking about is one that happens in the brain. The signals are getting mixed up. One doctor once told me I go through the cycles of sleep in the wrong order. You get your restful sleep in REM sleep but for me I tend not to even get there, my most recent sleep study revealed that on average my brain “wakes” between 15 and 40 times an hour. In these instances I’m not conscious, but the signals firing make it so my brain is.

What I fear and suspect is that this isn’t something that can be fixed. I’ve taken medication that has made me “sleep” but I’m still bloody exhausted, and wake up feeling like an exhausted zombie with dry mouth. To grapple with the ramifications that I may forever be exhausted is something I’m struggling with. I worry that my sister will get tired of hearing my comments about it.

It does explain a shit ton so i am glad for that. But I will need to learn how to live with this. It’s one thing to have always been tired and joked about it. Just figuring that it was just life figured that the last 6 years of stress was just that, stress. To know that I have a medical condition on top of all my other ones that leaves me chronically exhausted… man that SUCKS.

I look around my house at all the stuff I let go because I have zero motivation, zero energy and I’m kind of glad I’m just not lazy. But I am lazy, just because I’m exhausted doesn’t mean I shouldn’t be able to push through it but I’m just so tired. This is the stuff that goes through my brain. Nothing has really changed except now I know I’m not crazy, that there is a legitimate reason for me feeling like I do. I have no doubt the past 6 years have added to it but like everything I just need to keep putting one foot in front of the other. Because at the end of the day, what choice do I have? Unless I win the lottery I still have to get up and work everyday, still have to make sure the needs of my family are met, still have to make sure there is food on the table and bills are paid. Which on that note I’m $663 lighter after paying my property taxes today! Go me, adulting!

I hope I will find something that works, or at the very least I find some coping skills to deal because not seeing a light at the end of the tunnel is scary AF.

What I hope you get out of this is a sense that you are not alone, that if you’re always exhausted due to your circumstances it’s ok to let somethings go.