4 Reasons Not to be Envious of the Chronically Ill Life

pexels-photo-29992

facebook

Although I believe that these things are said in good nature, people often comment on being envious of different aspects of my new life, and these things, to anyone in my shoes, come off as quite ignorant. These are on the same level of frustration as platitudes for any of us living with a chronic illness. We roll our eyes at them, but really they become quite exasperating after a while. It makes me wonder what people really think I do with my day.

I’m sure we’ve all seen these memes that were really popular a few years ago:

9787334c3deba8ec6e925d6326aa58a8

I don’t actually spend my entire day, flopped on the couch, eating popcorn and loving a lazy life. Here are a few of the comments I’ve received over the last couple years of what makes people covet that I live the chronically ill life and they do not.

  1. “You’re so lucky that you get the perfect mix of calories and vitamins! How convenient!”

I wonder if when people say this, if they realize why I need an IV bag with all my nutrition in it. I’m missing an entire organ. A very large one at that. I have to now spend twelve hours a night, five nights a week, attached to an IV bag. Yes, I get my vitamins and calories. No, I don’t have to worry about eating the perfect diet. But this really isn’t something to want. It baffles me that people would actually seek these out. It’s really not something to want. Eat right, stay hydrated, and for the love of all that is good and holy be thankful you have control over your own nutrition!

  1. “You’re so lucky that you don’t gain weight!”

I miss working out. I miss being able to eat anything without any significant consequences. I wish I could go back to watching what I ate. You’re right, I don’t gain weight from eating. But the issues I have from eating literally anything and everything are quite brutal. If I don’t want to have those consequences (and I’m hoping that you’re all smart enough to figure out what the consequences of eating food without a small intestine does to your… uh… visits to the lavatory) I have to go without eating anything. Those are my two choices. Chronic diarrhea (there I said it!) or not eating… What would you choose? You may say it’s an easy decision until you’re faced with it in real life.

  1. “I wish I could Netflix and Chill all day and not go to work.”

Ok, I’ll admit, before I was sick, I would’ve thought this was awesome as well. But it gets boring really quick. For the first 10 months of being sick, I didn’t even have the energy to read. So literally, all I could do was watch TV. My brain was FRIED. I wish I could go back to being a productive member of society. I miss working. I had an amazing community of colleagues where I worked and I really miss those friendships. I now take care of my daughter, which I do love doing! And if asked what I do, I now say I’m a stay-at-home mom, which I wear that title with pride. But I didn’t willingly step down from my position. This decision was forced on me. Hopefully, one day, maybe, I’ll go back to work, but as of right now it’s not even a possibility. So watching my daughter from the couch, while I read or watch Netflix, is my current job. That and being chronically ill; it really is a full-time job. Trust me.

  1. “I would love to be able to sleep 9 hours a night!”

Yes, I sleep 9 hours a night on a good night, but I literally never, ever, ever feel refreshed in the morning. Ever. And it’s also not like I sleep in – I have a 2 year old and 2 year olds love getting up at the crack of dawn. I go to bed early because I am so beyond exhausted after supper that I can’t keep even my eyes open. I also have a lot of nights that I don’t sleep through the night. I often have to get up to go to the bathroom, and although I’m not in the bathroom for this long, I’m usually awake for a good hour – hour and a half when I’m up. Once I’m done in the bathroom, I lay in bed and I can’t calm my brain down. I still replay what’s happened in my mind all the time, and for whatever reason, my brain likes to remind me of my illness, my stresses, and all that goes with this new life at 2 a.m.

I get it, in a perfect world not working and not gaining weight while eating whatever you want yet still not becoming malnourished all while watching Netflix sounds like a super sweet deal. But when that all comes with chronic fatigue, chronic diarrhea, being hooked up to an IV 12 hours a day, getting awful cramping, etc. etc. – it’s really not all it’s cracked up to be. Be thankful for your health, be thankful for your job, and be thankful for those calories you have to count. Because one day, all of that can just be snatched up from under you and you’ll wish you had all of it again.

You envy my life? A day doesn’t go by that I don’t wish that I had yours.

facebook

Let’s Talk

13709777_1202430479791641_4631186250846762025_n

Today is Bell’s Let’s Talk day. For every text, call, tweet and Instagram post, Facebook video view and use of Snapchat geofilter, Bell contributes 5 cents to mental health initiatives. The whole point is to overcome the stigma that is attached to mental health.

I thought today would be a good day to talk about mental health, being that literally all of Canada is talking about it. We ALL have someone in our lives that is affected by their mental health. You may not know that these people are hurting, but I guarantee you that someone in your immediate circle of contact is struggling with a mental illness, with depression, with a constant inner battle that they are too afraid to speak up about.

Well today, I’m going to speak up about my inner battle. I never really struggled with my mental health until a couple years ago. When I woke up from being sedated for a couple days and was told about my new diagnosis, my world was shattered. I remember at one point, the doctor coming into my room and saying “Every time I come in your room, you look so sad.” REALLY!!? You mean people lose major organs, are told their lives will be forever changed, and come out of this smiling a week later? They sent in a social worker to come see me once. That was it. I needed someone to come talk to me and help me sort out what had just happened.

We need to talk about mental health and how our health care system is seriously lacking in this area! We need counsellors, social workers, and psychiatrists to seriously be following people who have been diagnosed with detrimental illnesses, who’ve been in major accidents, who’ve had medical emergencies that have changed their lives overnight. We need a system that will care when someone comes into the emergency room saying that they’ll harm themselves if they go home. We need a health care system that will treat mental health as seriously as they treat our physical health.

Real talk – the last (almost) two years I have struggled with depression. I’ve said this before, and it’ll be something I’m sure I’ll say for a long time, but I really miss my old life. It’s hard to not compare what my life is like now to what it used to be. It’s easy for me to paste a smile on my face and pretend like I’m doing ok emotionally, but to be honest, most days I’m not. I honestly don’t even know how to put into words how I struggle with this every day. But just know, that when I say that I’m struggling with depression, it’s not just me being sad or feeling sorry for myself, but these dark moments are affecting every aspect of my life. I have finally decided to talk to my doctors about it. I realized that there is no shame in struggling with depression and that taking care of my mental health will only help me take even better care of my physical health.

So there it is. Out for the world to know. I think I’ve only mentioned this struggle with a handful of people. But I’m hoping that in being honest with all of you, that if you’re also struggling with your mental health, whatever form that may take on, that you’ll also talk to someone. Message me, even if we don’t know each other. Talk to your doctor. Call 911 or your local Suicide Prevention Hotline. Call a friend. No one will you think you are any worse because you’re struggling with this. Just please get help.

#BellLetsTalk

facebook

Why Fatigue Is The Most Difficult Part Of My Day

15977914_600186336856856_5713323697879931627_n

What was the most challenging part of my day? Let’s rephrase that. How about, what IS the most challenging part of my every day?

One of the toughest tasks of my day would be actually getting up in the morning. Let’s be honest, the majority of us have had a hangover at some point in our life. Maybe some have only felt it once or twice, others more often. No judgment. Just a fact. I wake up every morning feeling hungover. But here’s the thing, I don’t drink. Yet I wake up every morning feeling groggy, lethargic, stiff, head hurting, and dehydrated.

It’s really no fun getting the hangover without the fun stuff the night before. But alas, I know that a large part of the chronically ill community feel this way in the morning. I had 9 hours of sleep last night. That’s a lot of sleep, and yet I’m still absolutely exhausted. All my energy is taken up by my body trying to function as normally as possible. In the evenings, I’m so tired that my body slowly starts to shut down, making it impossible for me to keep warm and making me need the bathroom even more often that throughout the day.

Now, let me tell you a bit about fatigue. Because so often when I tell people that I’m tired someone says “oh me too!” I am not trying to minimize that others are tired. You’re all working all week, raising kids, trying to meet deadlines, and trying to have a life outside of it all. I get it, I once was there too. But fatigue is very different.

The best way I can describe fatigue will unfortunately only resound to a percentage of the population: women who have been pregnant. Remember that feeling during your first trimester? The complete exhaustion? That tiredness that no matter how much you slept at night, no matter how many naps you had during the day, no matter how lazy of a day you had, you were still exhausted throughout the entire day? Nothing could satisfy that fatigue. That’s how I feel literally every day. Not just for 3 months. EVERY DAY.

I was going to try and summarize this video that I saw a few weeks back, but insteadI’ll just post it. It’s spot on as to what the differences are between fatigue and being tired. Take 2 minutes and give it a watch.

https://themighty.com/2017/01/video-chronic-fatigue-vs-tiredness/

Honestly, I’m not sure what I can do to make this easier. I do what I can when I can. I’m physically unable to do more than my body will allow. I’ve had to learn to listen or I become violently ill. It’s just a partof my day now and I’ve had to learn to deal with it.

How I Would Describe Myself vs How A Friend Describes Me

journalprompt

facebook

journalprompt

I’ve always hated being asked this in interviews; trying to turn negative sides of myself into positive. I’m very passionate – I’m stubborn and don’t change my mind easily. I work great under pressure – I leave everything to the last minute. I work well on my way own – I hate working on group projects; please don’t make me do it! And then there’s the positive attributes that we want to get across, but still sound humble about ourselves. I have worked in this field for X number of years but still have lots to learn – I deserve a senior position because I know pretty well all there is to know on this topic. I have put together this and this and that, but I did it with the help of so and so – but really, I’m mentioning it because I’ve done most of the work and I’m wanting to take credit without being seen as a jerk. It’s such a balancing act! You’re selling yourself, trying to come off as confident in your capabilities, but not come off as arrogant. It’s an art really.

Well, this isn’t a job interview so I’m going to try and do this without putting a sugar coating on myself.

I’m going to start off with things I know I need to work on. My faults. My weaknesses. I don’t want to sit here and only describe my wonderful traits, although there are many 😉 . I realize I’m far from perfect and how else does anyone grow if we don’t see those areas in ourselves.

I’ve come to realize recently that I’m quite insecure. I think I always have been, but those insecurities went away for a while. I grew confident in the young woman I had become. And now that a lot of my titles and a lot of who I was has been stripped away due to my illness I’m having a hard time with coming to terms with who I am and how I am viewed. I realize everyone’s lives have continued on, I’ve written about that before, but it doesn’t make it any easier some days. Now keep in mind, while everyone’s lives are busy and full with work and social gatherings, I’m literally at home, all day, every day. I try to get out when I can, but even at that, it’s for a few hours, a couple days a week. So I have A LOT of time to sit and dwell and think people have forgotten about me. Which I KNOW isn’t the case, but I get in my own head, and scenarios build, and I basically sink my own ship.

That goes well into my second point, I overthink EVERY THING. I keep those to myself most times, but again, I sit and dwell. I’m a dweller. I’m working on it and to help with that I’ve changed my phone’s lock screen to this picture:

anxious

A reminder that I should never be anxious, to hand my worries over to God, and to find His peace. It’s something to meditate on and we all know I spend way too much time on my phone and so now every time I look at my phone, I’m reminded of these words. Hopefully it doesn’t just become a screen that I bypass all the time, but it will give me a moment to pause and think every time that I see it.

Now to the good things (I already dwell on too much so why dwell on my negative attributes more than necessary)!

I’m a passionate person, which yes means I’m also very stubborn, but this has helped me continue to grow and move towards bigger and better things. I throw myself into new ventures that I truly believe, I advocate hard, and I fall in love with these projects. This, as of late, has been my writing. So yes, although I may just be a blogger (and no I don’t believe JUST being a blogger is a bad thing by any means), I definitely consider myself a writer now. I have grown exponentially in my writing skills and I’m really looking forward to seeing where this takes me.

I’m a mom, and I think a darn good one at that. My patience some days is barely non-existent. I think all moms go through that, but especially on my days where I’m really hurting or not feeling well, it’s even more difficult than on my good days. But I love my daughter, I try to be patient and I see her being patient with me. I look at her and it makes me want to be a better person.

I love. I’ve always loved people. It may not always seem that way as I’m also very much an introvert, but I love people. I love hearing people tell their stories, and having people vent to me, and having people be a part of my life and me being a part of theirs. My compassion for people has made me who I am today, and although some days my heart hurts for people around me more than on other days, I wouldn’t trade that quality for anything.

I’m an open book. I have done everything I can to be vulnerable through this process. I’ve always worn my heart on my sleeve. Ask anyone in my life, if I’m having a bad day, you know it (and unfortunately may get caught in the crossfires – sorry! Blame it on the passion.). I’m sad? You can see it in my eyes. I have good news? There’s no way I’m keeping it to myself.

I am a wife, a mother, a daughter, a sister and a friend. Although my life is very different than I ever imagined it would be, who I have always been is still there. My positive characteristics are growing more than ever, as well as my negative ones peek through more often than they used to. It’s who I am though, and I will embrace it with every fiber of my being.
The rest of this post is written by one of the closest people I have in my life, Maggie Gilbertson. After reading her description of who I am, after wiping the tears away, all I wanted to do was delete my half! Maggie did an amazing job embodying who I am. I am so very grateful to have you in my life. 
The best overall word to describe Carmen would be authentic. I’ve known Carmen since 2009, we met when we were doing our Social Service Worker program at Algonquin College. We became fast friends and even better we were each other’s ‘person’. This was before her gastric bypass surgery, before she met Joe, before she had Maddie and before that fateful day(s) when the incompetence of a fellow human almost killed her. In a way, we did lose Carmen that day. I think it would be impossible for her for her to stay the same person as she was before due to the devastating nature of what happened. We will all deal with life events that affect and shape us, but rarely it’s to the degree that Carmen has experienced. Trying to find peace is a very long and bumpy road and it looks almost identical as the road to success.

 The reason why I’ve chosen the word authentic to start with is because in all my experiences and adventures with Carmen I’ve never once doubted that she wasn’t being real with me. She doesn’t care for drama. She will never shy away from saying something just because it may be the unpopular view or a hard truth. She is kind, but never apologetic about her interpretation and feelings. Her and I don’t always agree and that’s one thing that I love about her. We are both people with strong morals and opinions. We can have a great conversation on any topic without being scared that we’ve said something that offended the other. The Carmen I know always has something to say, in class she would often challenge someone’s comment if she thought their view on it was too narrow or they were completely wrong. She would present another angle to satisfy her conscience as well to add to the diverse opinions that our class shared. I can always rely on her to be honest. We can share our thoughts and feelings with each other without judgment and if someone else was listening it might raise an eyebrow occasionally. Life can get messy and hard sometimes. It’s not always pretty and that’s okay. You need that person in your life and we have that with each other.

 Carmen is an emotional person who is exceptionally kind to others. She loves to laugh and joke around. She’s fantastically sarcastic and puts it to good use. She’s a mom who just wants to have enough energy to do everything she envisioned with her kids before she got sick. As a result from that fateful day another word to describe Carmen is chronically ill. This is something she never thought her future would hold, and neither did anyone who knew her. Carmen fights like a dog every day to not have that label define her. She is so much more than a person who is sick and I am so happy that she asked me to help her with this blog post. At the same time, I can see that Carmen is also trying to embrace her new situation as hard as that is for her. She doesn’t want this label or word to hold all the power. Where people will whisper it in hushed tones. She is taking her power back. She has the strength that most people only dream to have. Her and I share our daily successes and struggles with each other and sometimes we are just SO done with life that we need our ‘person’ to listen and say “yup this sucks”. We don’t always try to fix the problem, listening is enough some days. She has great compassion for others, and it shows through when we talk about our own struggles. Comparatively, our problems are not equally matched, but it’s not a competition. My problems are important to me and Carmen’s are important to her. I don’t need to say that she is a great friend too. That goes without saying.

 Carmen has forgiveness in her heart, and always will. She has a tremendous amount of love to give others and herself. A lot of who Carmen was before she got sick is still with her and she fights to keep it that way. Most days she’s successful and the other days she’ll try again tomorrow. Sometimes there just aren’t enough spoons left. Carmen has been given a new perspective, one that no one could have anticipated, but this is her path for better or worse. She does it with grace and strength. It isn’t always easy and she is still learning how to navigate it, but the warrior inside has been unleashed. She is not a quitter and that’s one of the biggest reasons why I think she is still here today. I would be lost without her in my life(and her sarcastic comments).

facebook

Dear Short Bowel Syndrome

pencil-918449_960_720

15873166_594163237459166_6898998327162149722_n

facebook

Dear Short Bowel Syndrome,

You are a jerk. You are literally the crappiest thing that’s happened to me. I hate having you as a part of my life and I wish I had never been introduced to you.

I knew nothing of you before, most people don’t, and most people don’t think you’re as awful as you are because your name isn’t scary sounding. Maybe as bowels you were just tired of people not thinking of you in general and that’s why you decided to act up. I’ve always known what you, my bowels, do in my body, but do we ever REALLY think about it? You digest my food, but nobody ever wonders what would happen if you were to go missing. Well now that I know, I wish I was ignorant to that fact again. Maybe nobody thinks much of you because you’re such an irritable bastard!

Well now you have my attention. I miss you more than I’ve missed anything. I would give basically anything to have you back. You feel like a long lost lover, one that I will forever yearn for. One that I will never forget. Your absence forever haunting me.

I know you’ll never come back, you’re gone forever, but know that you will never be forgotten and that I will think of you every day.

With love and despair,

signature

facebook

Recovering from the Holidays

santa2016-2-2

facebook

The holidays are tough on anyone. Even if you’re in tiptop shape, you’re tired after this crazy time. There’s so many events, a constant flow of people, and your schedule is completely turned upside down. There is no normalcy during this time of year. Imagine if you will, how much more the holidays takes its toll on someone who already gets exhausted by just surviving on an average day.

I love Christmas. Always have. And this year especially I was excited because I have a two year old and Christmas is finally becoming magical again. We started prepping her for Santa in hopes that she wouldn’t cry when she saw him (didn’t work by the way), but every morning she would find our stuffed Santa, grab him, hug him and yell out “Ho Ho Ho!” She then would ask for the tree to be turned on (or in her words OFF! OFF!) and proclaim that it was so pretty. This was our routine every morning and I looked forward to it every day (almost as much as I looked forward to my morning coffee).

Behind my excitement for Christmas was a sense of dread because I knew how exhausted I’d be at the end of it all. Our family planned quite a few events to go to and I could only hope and pray that I could make it to them all. Thankfully I actually did better than expected, not even getting sick once, but I woke up every morning with a chronically-ill, Christmas hangover (this is really the only way I’m able to describe how I felt every morning). Was it worth it? You betcha! But it still made every day hard.

It’s January 3rd now and the events are finally over. It’s been freezing rain here all day which is just encouraging my plans for today – to do nothing! We all need a vacation after the holidays and that’s what my day is today, a little vacation. My daughter and I are having a pyjama and Paw Patrol day. She is just waking up from a beautiful two hour nap and I’m sure she’ll be ready to go back down again in a couple of hours (it’s now been a couple hours and she’s really not happy that I put her down for nap #2). Both of us are exhausted from the last couple weeks.

I guess all I’m trying to convey in this post is that although I know that certain events in my life will take literally every bit of energy out of me, it’s worth it sometimes. Most of the time actually. I’ve loved all of our extra family time. I loved watching my daughter tear open her presents. I’ve loved all the delicious food (but not the consequences of said delicious food). The traveling was hard, the late nights were even harder, and the dehydration from it all was the hardest. I’ll be recovering from all this for at least the next week, realistically probably two. Maybe even three. And even though I had my ridiculously cranky moments because I was so tired during all of it, the holidays was still a very magical time this year; something being ill thankfully hasn’t stolen from me.

I may be late in saying this but Merry Christmas, Happy Holidays and I hope you all have a wonderful 2017!

Cheers!

For the month of January, I will be doing My Mighty Month challenge. A lot of these posts will be on my Facebook page. Please click the link below to follow me there!

facebook

Is There a Time Limit on Grief?  

facebook

I’ve learnt over the years that we not only grieve when somebody in our lives die, but that it’s natural to grieve any form of loss in our lives. Of course we grieve when people near and dear to us die. The world has grieved the loss of many celebrities this year. We grieve as we see the devastations happening around the world – both natural and man-made. We grieve the end of relationships and friendships. Grieving the end of a chapter in our lives, the end of a good vacation, even the end of a really good book.

The question I want to ask is, is there a time limit to how long we’re allotted to grieve? Are we given just a few months and then expected to move on? Only allowed to relive the empty space that was once filled by said person, event or thing on the anniversary of its death?

I’ve been grieving the loss of my health for the last year and eight months. Now, for those of you who have never had major health issues, you probably think I should have moved on by now, right? For any of you who have had your diagnosis for the entirety of your life or from a very young age, maybe you’ll give me more time, but you may also think that at a certain point I need to put on my big girl pants and get on with it. But those of you who had good health and then fell ill, losing such a huge portion of your life, you understand what I mean when I say I’m still grieving.

I know I’ve broached this subject before, I probably will again to be honest, but for the first time in months I finally feel like writing again. Why you ask? Because I’m still grieving. This all still hurts. And it’s so much easier to crawl back in my hole than to try and make you all understand how it feels.

For the majority of people with any sort of chronic illness or pain, winter is awful! I live in Canada and although winter solstice is right around the corner, we still only have sun for a maximum of 8 hours a day at the moment. It gets very depressing when there are many days where it’s very gloomy and we don’t see the sun for days at a time. And the days when it is sunny, it’s extremely cold. Everything hurts because of the cold and the damp weather. It hurts just to wear the heavy coats and layers of clothing. If it’s bad weather I’m stuck in the house. Even on nice days, to take my daughter out takes an exorbitant amount of energy just to get us both bundled up to go outside.

I’m reminded on a daily basis of what I once had. The holidays make it well known to me that I am still very sick. I spend the rest of my day exhausted and in pain if I decide to take a couple hours to bake or go do my Christmas shopping. I have had to turn down parties knowing I need to save my energy for other events. I’m not even able to go see my family this year because the travel will cost me too much for the short amount of time I’d be able to spend with them.

I think all of this still part of the grieving process. It’s hard to shake the sadness off. I’m forcing myself to get out of the house, to shower, to get dressed. All things people who grieve struggle with on a daily basis.

I literally can’t go a single day without being reminded of what I’ve lost. Some days are easier than others. Will I ever have a day that I don’t feel sadness? Jealousy of others living without an illness? Anger that this all happened to me? No clue. But I know that I’m not giving up. I will trudge through this. And I will take all the time I need. I refuse to put a timeline on my grieving.

facebook

Broken

facebook

In Japan, there’s a term called “Kintsukoroi”; it refers to broken objects which are repaired with gold. This way, the flaw is seen as a unique attribute to its history and adds to its beauty.

Shortly after my first surgery, when my small intestine was removed and I was told I would never eat or drink again, I was in ICU and my mom was there visiting. I was obviously processing this grim news and spent most of my waking hours in tears. I was broken in every sense of the word. My mom took me in her arms, as much as she could being that I was attached to multiple IVs and oxygen, and with her head next to mine she whispered to me that she would take me broken over not having me at all.

Although these words comfort me on a daily basis, it still hurts my heart. I’m broken. I have pieces missing. And no matter how far I may come with medications or surgeries, I will forever have the scars that remind me that I am and forever will be broken.

But really, who isn’t broken in one way or another?

I love the idea, however, that maybe this brokenness can make me more beautiful. That gold can be added to these cracks and scars. Who doesn’t like to add a little bling to their life?

Ok, physically I’m not a fan of the scars that have been left on my body. But I have noticed how my being broken has changed me in other ways. I don’t get offended easily – it’s not worth the energy that it uses up. I make sure to spend some quality time with friends and family and I get family photos any chance I can. I’m more patient now. I’ve learned sympathy is a great asset to have. I’m slowly outlining my scars with gold. Making my brokenness beautiful with things I may not have had in my life if my life didn’t take this turn.

I woke up from a dream last week full on sobbing and I whispered “Jesus, I’m too broken. I need you to carry me.” I don’t remember what the dream was, but I’ve been hanging on to those words all week. “I’m too broken. Carry me.”

I’ll never get through this on my own strength. I’ve had to rely on family, friends and my church. Now I really need to let Jesus carry me for the time being and let more gold fill in the broken parts of me.

kintsukuroi

 

facebook

Discovering My New Self Since My Diagnosis

facebook

Through every stage of life we’re trying to figure out who we are. What is our role in society, how do we fit in, who are we really? What side of us do we keep to ourselves, show to those closest to us, what do we show to the rest of the world? We are constantly evolving. Jobs change us. People change us. Age changes us. But most of these changes happen gradually enough that we adapt without any thought. What happens though when something comes along and changes everything rapidly? Everything about you needs to accommodate for your new reality.

Since becoming sick, I’ve had to stop working, my social life has changed dramatically, and my relationship with my husband has changed. I no longer work out, my energy level has changed dramatically. My months are filled with appointments instead of coffee dates. I sport an IV line on my chest which everyone stares at, have a handicap parking pass, and have a walker for my really rough days. I’ve made new friends, lost old friends, and grown closer to friends that really stuck by me through all these changes. The list goes on and on, but name something and I can pretty well guarantee that it’s changed in one form or another.

I’ve been saying it for the last year and a half, and I’m sure I will be saying it for a while yet, but I miss the old me. I miss my old life. I was full of life, joyful, positive, loud and opinionated. I loved going out and I hated staying in. If I had an afternoon free, I would either be out being social or working on one of my various projects.

I’m quiet now and much more reserved. It takes a lot of energy to be full of life. I’m not surrounded by people all the time anymore, partly because of not working at the moment and also because going out takes a lot out of me. I find it really difficult to follow conversations now, especially in the evenings when I’m really tired.

How do I go back to being who I used to be? Is it even possible? With my diagnosis and disability has come wisdom and an empathy that has helped me reach out to people. But would I give it up to be the old me again?

I’m sitting here trying to put into words who the new me is and I’m having a hell of a hard time doing that. I think I need an “Under Construction” sign to put on me for the time being. I don’t know who I am right now. I’m still trying to figure out how all of this plays into my new life.

underconstructionareasign

Yes, I am a mom, a Christian, a wife. But I’m talking about more than labels right now. I’m talking about what knits me together. What words others would use when describing me.

Ideally I’d like to eventually piece who I am back together. Some of my old self and some of my new self. The joy and thirst for adventure I had with the wisdom and vulnerability this new life has taught me. I’m still trying to figure it out, it may take time, but I want people to see the joy and the shine that used to show in my eyes.

facebook

What I Post On Facebook vs My Reality

facebook

We all know that what we see on Facebook isn’t always what exactly happens in real life. Everybody posts the good stuff. They want to show off, show the progress that’s happening in their lives, and boast the highlights of what’s happening in their life. Well, here’s the inside scoop of what my reality actually looks like vs what I like to show on Facebook.

When I’m Put Together vs My Everyday “Sick” Look

1

Anytime I go out in public or have people come over, I make sure I look good and 9 times out of 10, I post a selfie from that day because I feel good. I feel like garbage 99% of the time, no point in giving people a visual of what I’m actually feeling on my down days. I’ve heard “but you don’t look sick” so many times. Trust me, if you could sneak a peek at me while I’m at home alone, you wouldn’t be saying that! And there’s a reason for that – I use a lot of my energy to look good because it helps me feel good. So why use up that energy on days that I’m A. not feeling well and B. sticking around home anyway. I’ve limited the audience to a very select few who get to see me on my terrible days. It’s not how I want people to see me.

To get ready for a day out or for a visit takes an insane amount of energy. Any of you who deal with a chronic illness or pain totally feel me on this one. I can’t simply jump in and out of the shower and get ready quickly. My routine takes a long time as I really need to pace myself. Simply standing in the shower for more than 5 minutes winds me – forget the days I need to actually shave my legs! I’ve needed to put a chair in the bathroom to do my hair and makeup. I even get tired holding my arm up as I dry my hair. My outfits are carefully chosen, making sure I wear something that flatters me as my surgeries have left me with many lumps and bumps. I always need to rest whether that be just sitting down or sometimes even laying down, as this entire process exhausts me.

Some of you may say “well why waste so much energy?” I’ve come to discover, for myself anyway, that if I’m always in my pyjamas and not put together, I feel sicker. I do try to at least get dressed on days that I stay in, it doesn’t always happen, but even just putting jeans on helps to change my mindset from being ill to just really tired.

Going All Out For Projects vs How I Pay For It The Next Day

2

I’ve always loved projects. I love learning new skills. And although I’ve had to put many on the wayside because of my energy levels, I still need to indulge in them from time to time for my own sanity, even though I know that it’ll cost me greatly in energy.

Just the other day, I decided to try my hand at making marinara sauce. I got the recipe from an Italian, so it’s got to be the real deal, right? The amount I made came out to about 35 litres which was way more than I anticipated, but we’ll be stocked for pasta and pizza sauce for a while now. It was a delicious success! Thing is, three days later and I’m still exhausted from it. I loved making it though, even if it means I’m out for the count for the next week. I love the aftermath of a finished project – is there anything better than seeing a task be completed?

I knew that this would tire me out, but it still surprises me when I get knocked out for so long from something that in the past a good night’s sleep would’ve cured.

Going Outside With My Daughter vs The Rest Of My Day With Her

3

I like to share a lot of pictures of my days with my daughter. Although the plan was to go back to work once my maternity leave was up but plans changed when I was diagnosed with Ultra Short Bowel Syndrome. I am very much enjoying the extra time I’m getting to spend with her, but any of you who have spent any amount of time with a toddler knows that they never stop. Like ever. I wish I could do more with her. I wish we could spend more time outside and on the play structure. But after 20 minutes max of playing outside, I’m tapped out. I physically am unable to continue. The rest of the day is spent watching her play from the comfort of my couch.

I’ve tried play groups, but chasing after her for 2 hours is impossible. I’ve looked into swimming lessons, but I can’t go in public swimming pools as it could cause me to get an infection. We have most of our play dates here as I know the environment and I can more or less control it.

Thankfully our living room closes off from the rest of the house, so we spend our day in there. Me on the couch and my daughter playing with her toys. She is a very independent child and is perfectly content playing on her own. I really wish I could keep up with her, but it’s just not possible.

Events I Go To vs How I Prepare Leading Up To The Event

4

I love sharing pictures of events I get to go to. It gives the illusion that I do have a life sometimes. What you don’t see however is how exhausting the smallest event can be for me. Each incapacitating me for at least a couple days afterward.

Being chronically ill has changed pretty well everything in my life, but I still do my best to make it to events such as concerts, weddings, trips, etc. I do however have to plan ahead for them differently than I would have previously. I went to a concert back in July and literally stayed in bed until supper time so that I would have the energy to stay at the concert as long as possible. At weddings. I unfortunately don’t have the energy to dance anymore, and I miss it, but I stay as long as I can and at least try to enjoy the dinner. And my trips so far are planned around leaving the hotel mid-morning, napping for 3 hours in the afternoon, and returning by 8pm for the night. None of these are ideal, but if it means I get to enjoy these moments, then it’s what I need to do.

My Family vs My Family

5

I brag ALL THE TIME on Facebook about my family and it’s the same in reality. My husband is the most loving, caring and supportive man I could’ve ever asked for. Those pictures of my daughter always smiling, that’s pretty well how she always is. My family brings me so much joy and happiness. They keep me grounded and they give me hope for the future. There’s no point in showing it any differently on Facebook because they’re already pretty freakin’ great!

facebook