Chronic Illness Archives - A Gut Feeling

Category: Chronic Illness

25
Jun
2018

Finding Your Community

categories: Chronic Illness, Community, Friends, SBS, TPN, warrior

Community: a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

Before leaving the hospital back in April 2015 with my new diagnosis, I made sure to get connected with a fellow patient that also had the same ailment as me. I had asked my nurse to connect me with someone else who was also on TPN (IV nutrition) and who has Short Bowel Syndrome. I needed to know that I wasn’t leaving the hospital completely alone in this. It took months of trying to connect, but we finally met and it was so good to know that someone else understood how I felt. There’s no feeling like sitting across the table from someone and finally be able to ask the questions that have been burning up inside you. To be able to vent your frustrations and have some say “me too”.

The reason I’m writing about community today is because after being on TPN and having Short Gut for over 3 years now, I finally managed to start a TPN support group. And man, did it ever feel good to sit a room with others who GET IT! I have family and friends around me who do their best to understand. But if you’ve never had a severe chronic illness, have never had to rely on a feeding tube to sustain you, and never had to go through life threatening surgeries – then no matter how much you try, you just will never understand what we really go through. And that’s ok. If that’s you, then read on so you can help encourage those in your life who are ill to find their community. You can still be a huge part in our stories!

No matter what walk of life you’re going through, community is important and what your community looks like will constantly be changing. And that’s not a bad thing, something I’ve really had to learn over the last few years. When you’re in school, you tend to hang out with kids that have the same interest as you. In University, others that are in your classes, your residence or your social clubs. And then usually we find our lifelong friends as we’re adults and working. When I had to stop working, I lost a huge community of mine and was lost for a long time.

I’ve now found myself new communities. Building into one on one relationships and realizing not all groups have to be large. Spending a lot of time with other mom friends and helping my daughter also start building her own communities.

But here it is, I am now building myself a new community with others who when I tell them I’m not feeling well, they actually get it. When I tell them I’m exhausted today, they understand the fatigue I’m talking about. When I tell them that my vitamin D levels are up and my TPN infusions have gone down by one day a week, they celebrate huge with me because THEY GET IT! Again, I know that I can celebrate and cry with my family and friends who do not have chronic illnesses, but there’s something to be said when you have someone’s ear that can actually empathize. Who have had similar disparages and celebrations.

Sitting in a room for an hour and a half with fellow TPNers and being able to discuss different products, diets, and frustrations, being able to talk about our medical teams, and understanding that none of us could stay too long because of our energy levels. There’s just something to be said about having that unspoken understanding that comes almost right away versus after 3 years of relationships and still having to explain how I struggle on an everyday basis.

So here’s my challenge to you: Find yourself a community and if you can’t find one, start one! No matter how rare your situation may be, you’re not alone. Even if your disease is insanely rare, there’s at least someone out there that can empathize with your circumstances. Find them! That’s the joy of the internet. I have come to be a part of a few Facebook support groups and I started my own for those on TPN in my city and now we’ll be meeting every two months! Who knows what it’ll grow to be. But someone had to start it, and I’m so glad that I’m the one who did it. It won’t happen overnight, but I can promise you that someone else also needs that support group and eventually you guys will find each other. Find your community.

So now after over 3 years of being sick, I don’t feel alone. I know I’m not alone. Now I have my little TPN and Short Gut family. <3

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From left to right: Mirelle, myself (Carmen), Susan and Zach
(one person had already left before we took the picture)

06
Mar
2018

A Glimpse Into Parenting With A Chronic Illness

categories: Chronic Illness, Community, Family, Parenting

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Parenting is hard. In fact, I’d go ahead and say that it’s one of the toughest jobs out there. You don’t get much of a break, if ever. It’s a 24/7 job, unless you work outside the home, and then you get to leave for a few hours to do another job, and then have to come back and continue being Mom or Dad or sometimes both. They are your bosses, you can’t reason with them most of the time, they dictate everything you do, and you don’t get paid. The lives of these tiny people are completely in your hands, and not only do they drive you absolutely up the walls, you have never loved someone to this extent and to this degree in your life. A love so strong that it can hurt.

Let’s not forget that everyone out there, including those without children, are self-proclaimed parenting experts. Doesn’t matter what you do, you’re being judged on your parenting. Co-sleeping, breast feeding, screen time, crying it out – whatever it may be, it’s controversial and someone has an opinion about it.

Having a chronic illness is also a full-time job. You’re constantly exhausted, in pain, your schedule is dictated by your bathroom breaks/medication schedule/sleep patterns (or lack thereof)/appointments. It is a harsh reality out there for a few of us. And to top it all off – 99% of the people around you don’t get how truly hard it is to be chronically ill.

Now let’s mash these two things together, being a parent and chronically ill, and see if you can imagine what it’s like.

I’m currently a stay-at-home mom to my beautiful, intelligent, mischievous 3 year old daughter. She’s stubborn as they come (yes, she gets that from me) and she tests my patience every day. I didn’t choose to be a stay-at-home mom, not that I don’t love being at home with her, but the turn of my health back in 2015 is what dictated that I can no longer work outside of the house. I am to be at home, all day, with my daughter and my ailments.

Let’s see if I can give you a glimpse into what it’s like to be a chronically ill, stay-at-home mom. I have almost no energy. Standing for more than 10 minutes at a time takes a lot out of me. When I go out with my daughter to any sort of activity, I have to make sure I have nothing else planned for the day. It takes absolutely everything out of me. I don’t have energy for all these play groups. Most of them are during her quiet time, which I desperately need, so I end up not going to them. I need to be sure that any activity I take her to, there’s seating for me, as I can’t stand for long. Any sort of exertion and I’m done for the day. These are things I have to plan for and think about, where as it wouldn’t even cross the mind of any healthy parent.

I’m not the most patient person to begin with. I’m a lot more patient than I used to be. I think part of that is I’m married to the most patient man in the world, and with having health issues and having to deal with doctors’ offices and insurance companies, you kind of have to learn to be more patient. The thing is though, it’s really hard to remain easy-going when you’re in pain and so beyond exhausted and you have this little person who continues to say no, continues to not listen, and starts to get upset because they’re not getting their way. I HATE that I get so unbelievable cranky during these moments. I beat myself up constantly because of that. I don’t want my daughter to think of me as a curmudgeon, although really, that is what I’ve become.

The other thing that I have really struggled with is the judgement that people have on parenting types. I realize that the articles people post on Facebook aren’t directed at me, but how can I not take it personally. The big school of thought going around right now is that screen time is equal to doing heroin. My daughter gets two, two hour quiet times during the day and she gets access to one of our old phones. We monitor what she watches and plays and there are only age appropriate apps on the phone of course. Here’s the thing though, if she doesn’t get those two quiet times, it’s me that’s affected. And it’s not just an “I need my alone time” selfish reason. No, this time is absolutely necessary so that I don’t make myself sicker than I already am. I need to lay down during those times. Most parents will clean and prepare supper while their kids nap or have quiet time; I lay down and rest otherwise I crash, and when I crash, I crash HARD. So you’re telling me that because of my illness, my kid isn’t learning as much as she should and this habit is equal to a drug addiction? How do I not take offense to that?

I have been extremely blessed to have people around me that have helped take care of my daughter. My mother-in-law comes once a week so I can go to appointments and lunch dates (which I have found is equally as important to my health as anything) without having to drag my daughter along. I have friends who know my health limitations and will help chase after my daughter if need be. But not everyone is as fortunate as me. And it’s hard to ask people for help, especially when they don’t realize how hard it is on you. I don’t look sick. Unless you’re in my extremely close circle of family and friends, you don’t know how truly sick I am because I won’t let you see it (I look NASTY on my bad days!)

I feel like this post is a lot of venting, but here’s what I really want to get across. If you have a chronic illness and you’re a parent, you’re not alone. Both of these things are insanely hard on their own, and put together, it’s by far the hardest thing out there. You can argue me on that, but unless you’re living with both, don’t even bother. And if you’re not living with both or either of these, please educate yourself. Help those around you who need it. Even just a text saying “I’m here for you”. A visit with a coffee! An offer to babysit so they can go to appointments. A hug when you see them. Both of these lifestyles are very isolating. Just imagine what it’s like to have both at the same time. The biggest thing you can do is be there for that person.

With all this being said, I would never, ever change my status as a mom. In fact, we want to grow our family, because to me, it really is worth it. It’s hard, but man when that kid looks up at you with all the love in their eyes, you realize that all the pain and exhaustion is 100% worth it. I would gladly throw away the chronically ill portion of it all, but that won’t be happening, so if I have to be a mom paired up with being this sick, I’ll do it. And I’ll do it to the best of my abilities. But again, know that YOU ARE NOT ALONE!

Let me say it one. More. Time. You are not alone!

12
Sep
2017

The 5 Stages of Grief After Becoming Chronically Ill

categories: Chronic Illness, Depression, Grieving, SBS

Everyone has heard of the 5 stages of grief, I’m sure of it. Whether you’ve studied it in school or have read about it in a book or magazine, you at least have a basic knowledge of what it is. Most, if not all, of us have thought about various losses in our lives and applied the principles of the 5 stages to what we’re going through. A death, the loss of a job, of a friend, and in my case, my health. I never thought of it too seriously until the last couple years when I became ill. I quickly found that you don’t go through the 5 stages in a linear fashion. I wish it was a simple formula so you know if it would be coming to an end soon. But it’s more like a lot of hopping back and forth, until you’ve finally reached acceptance, and even then, is the process really complete? So here it is, how I’ve been going through the 5 stages of grief: denial, anger, bargaining, depression, and acceptance.

Denial

I couldn’t tell you how many mornings I’ve woken up hoping that my becoming ill was all just a horrible nightmare. One big, long, horrifying dream that I will eventually wake up from. Becoming so sick (literally overnight) just happens in the movies; this couldn’t have possibly happened to me. When the grogginess of my sleep fades away and I realize that I’m still tethered to my IV bag, the heaviness of what my life is like now settles back onto my shoulders, I throw off my blanket, and start my day with a weariness like no other.

I still have moments of denial from time to time when I think that I can do something that I could once do when I was healthy. Even just my schedule has to reflect my energy and health, and if I ignore that and deny the fact of how sick I actually am, I pay dearly for it and end up sick in bed for days at a time. Denial likes to hang on as long as it possibly can. To make sure you miss your old life, miss your health, miss whatever it may be, for as long as humanly possible.

Anger

OOOOO! This one was, who am I kidding, is, a tough one for me. I don’t even know how to start expressing to you how angry and devastated I was that I got so sick. I was angry at myself, at the doctors, at the hospital, at the situation, at God, at probably anything and everything that could have possibly changed the outcome of how I came to be so, so very sick. I was mad that I woke up so ill. I was mad that I couldn’t have any more babies. I was mad that I couldn’t work anymore. I was mad that I’m suddenly so dependent on others. The anger and bitterness that seethed out of me the first few months were awful.

I don’t know how many times I literally fell to my knees, so angry that I was crying, yelling and cursing up at God. I have used some ungodly, not so lady like language in my ranting to God in the past couple years, and you know what, that’s alright. I learned that God can take it. He would rather you let it all out and tell Him how you’re feeling. He knows your heart anyway, might as well just vocalize it. Do you know how cathartic it is to yell AT someone? Some of you may think I’m absolutely crazy for yelling at my God, but it’s better than keeping it in and it’s WAY better than yelling at someone else in your life. If I yelled like that to my husband, well, I don’t think he’d appreciate it so much!

Bargaining

To be honest with you, I didn’t spend too much time on this one. I think because I’ve always been a realistic person – I’ve never seen myself as either optimistic or pessimistic. I’ve just always realized what is, is. There’s really not much to be done. No point in regrets. Let’s learn from the past and move on. So, who would I be able to bargain with? Sure, I pray that God will miraculously heal me. “Heal me and I’ll do literally whatever You want me to do!” Maybe I should switch that around and say “I’ll surrender my life and then maybe You’ll heal me?!” But realistically I know that my health and my life has changed dramatically and there’s no point in wishing and hoping and wondering what could be. This is it, it’s in my own hands now and I need to push forward. I’ve always hated relying on others, so maybe that’s where that attitude comes from.

Depression

I struggled with depression since day one of my “new” life. This is about as vulnerable as things get with me, but when I woke up from being sedated and was told that my small intestine had been removed and that my quality of life would be severely diminished from now on (actual words from the doctor with horrible bedside manner) I wanted to die. That was it. I was in so much pain both physically and emotionally. I was absolutely devastated. And the challenge set before me was too hard. I didn’t want to deal with it.

Although I would never call myself suicidal, I would have been perfectly okay if something had happened the next day and I would’ve died. This is the attitude I held for the first 18 months of being sick. I KNOW I’m not the only one who has felt this way. I’ve spoken to many people who would describe their depression in the exact same way as that: “I don’t want to kill myself, but I’d be okay if I were to die tomorrow.”

I finally realized that I needed help, I sought out a counsellor, and after months of seeing her, I realized I also needed even more help and I went on anti-depressants. By far one of the best decisions that I have ever made. There is no shame in needing help; whatever form that may take.

If you are struggling with suicidal thoughts, please talk to someone. A friend, a doctor, a counsellor. There’s also the National Suicide Prevention Lifeline in Canada 1-800-273-TALK and the National Suicide Hotline in USA 1-800-SUICIDE.

Acceptance

I think that I have finally come to the point where I have more or less accepted my illness. I say more or less because I still hate it. I hate my diagnosis. I hate that I’m sick. I hate that my life is governed by these circumstances. However, this has become my “new” normal. Soon enough I won’t be able to call it my new normal, and it’ll just be my normal. I know how to structure my days and weeks so that I can benefit the most out of them. I know how to save energy for certain events and that I’ll need days, sometimes a couple weeks, to recover. I know the consequences of forgetting certain meds, eating certain foods, and staying up that extra hour. I’m used to this now. This is my life now.

—–

I don’t know if I’ll ever come to 100% accept my circumstances. I’m sure I’ll go back and forth and go through these stages again and again, especially when it gets in the way of living life “normally”. But for now I think I’ve accepted things as best as I can and I need to be okay with that. And no matter what stage you personally may be in, that’s okay too. There’s absolutely no need to rush through the stages of grief, regardless of what you may be grieving. It takes time and it’s important to fully process the losses in our lives. Everyone grieves at a different pace and in different ways.

And that’s okay.

15
Mar
2017

Why Sepsis Should Be Taken So Seriously

categories: Chronic Illness, SBS, TPN, warrior

Sepsis. This is a medical term that I knew nothing about, hadn’t even heard of, until I was diagnosed with it back in 2015. Sepsis is a toxic reaction, a poisoning of the blood, to an infection found in your body and can lead to death (Mayo Clinic). In fact, 1 out of every 18 deaths in Canada is due to Sepsis (Sepsis Alliance). There are more deaths due to Sepsis than Colorectal and Breast cancer COMBINED in Canada (Statistics Canada).

Last summer, if you know me or follow me on Facebook, you would know that I ended up back in the hospital twice due to an infection in my central line – that was Sepsis. The bacteria started in my Hickman, which my nutrition travels through and goes to my heart. Then my heart pumps my nutrition throughout my entire body through my blood. I wasn’t in the hospital just because I was unwell, but because if left too long, I could have gone into Septic Shock and died. The mortality rate for Sepsis increases 8% EVERY HOUR that treatment is delayed (Sepsis Alliance). Sepsis is that serious.

I had decided to write about Sepsis after one of my fellow SBS warriors was admitted into the hospital last week due to Sepsis. Many people that I know that are on TPN has had Sepsis before. It’s very common to those of us with central lines and unfortunately an ongoing battle that we will forever face.

I have been told since my first day leaving the hospital with my line that if I have a fever that I MUST come into the hospital and be checked for infection. It’s not something that I’m willing to play with. It’s not worth risking my life. Thankfully, every time I have been to the hospital with a fever, they’ve taken it very seriously and at least isolate me, keeping me safe from any other infectious diseases that may be in the air.

Why did I choose to write on such a serious and some may say morbid topic? Because this is my reality. Sepsis is something that I, and many others with a Hickman, fear. This is why I’m so paranoid about keeping my line clean. I can’t go in public swimming pools or in the lake for a swim. I have to keep my Hickman site covered at all times. I have a sterile area in my bedroom for where I connect to my TPN, and only a Registered Nurse, my husband or myself touches my line. I’m constantly using hand sanitizer. I have had to become a germophobe to ensure that I stay healthy. Yet another part of my life that has severely changed since my diagnoses.

A huge part of why I do this blog is to educate, and this is what I’m doing today. I’m wanting people to know about another part of what I struggle with, with my diagnosis.

Here are the symptoms of Sepsis:

Educate yourselves. Sepsis isn’t found just in people who have central lines or suffer from a chronic illness. It’s serious, let’s treat it that way.

07
Mar
2017

Painless Fashion – Holding On To Your Style While In Chronic Pain

categories: Chronic Illness, Community, Fashion, Friends, SBS, warrior

When picking out your clothes for the day, have you ever needed to stop and think about how much pain they will cause you? You might think about what shoes you might wear depending on how long your day will be or how much time you’ll be spending on your feet. But what about just your jeans? Or what coat you’ll wear? The fit of your shirt?

During the winter months, this is what I need to think about every day. My skin becomes so sensitive during the cold months that even a pair of jeans becomes intolerable. I had to go and buy new clothing this winter just so I didn’t have to wear jogging pants every time I left the house. I had to decide whenever I went out whether I wanted to be cold or in pain because the weight of my winter jacket caused me too much pain.

I wear only comfy clothes while I’m at home, but I like to look good when I leave the house. I don’t mean that I get incredibly fancy, but I like to wear fitted jeans, makeup, and I do my hair. It got me thinking that I should do a blog post about how it is possible to be comfortable, in as little pain as possible, and yet still be fashionable! Thankfully, leggings and tunics are very à la mode right now, but it’s possible for those of us that are in chronic pain to still get our unique fashion sense in without feeling like a bum all the time.

So I enlisted some help from two other of my Spoonie Sisters.

Here’s Sarah! Sarah likes to say that she has Alphabetitis. Her diagnoses include Myalgic Encephalomyelitis, Rheumatoid Arthritis, and Neuro-endocrine Tumors, to just name a few from the extensive list of ailments she battles with. Sarah and I have known each other for a few years, and our friendship has become stronger as we are able to relate to each other. We know that we can cancel on each other at any time and the other doesn’t get upset. We get it. Sarah pushes herself as much as she can to have a fulfilling life; giving everything she has to her passion of art and food, and to her husband and two beautiful girls. Seeing her face beam as she modeled these dresses was just amazing! We don’t get to feel this good all that often because we’re in constant pain, but one afternoon of feeling like a star just made it all worth it!

A maryllis Dress by RAMONALISA

Wonder Woman Dress by ANNIE 50

Ombrelle by CHERRY BOBIN

Bicicleta Dress by RIEN NE SE PERD, TOUT SE CREE

Catharine has recently been diagnosed with Ehlers-Danlos Syndrome. This is a connective tissue disorder which leaves Catharine’s joints loose, causing them to dislocate often. Her muscles are also constantly tense, compensating for her joints’ slackness. Catharine has moments where even being touched is too much to bear. Every time I see Catharine, she’s got a huge smile on her face. Although I know that she has some unbearable days, Catharine’s joy radiates through her and it’s hard not to be infected by her attitude when she’s nearby.

Joe Dress by FIG CLOTHING

Daiquiri Reversible Camisole Bicycle Print by RIEN NE SE PERD, TOUT SE CREE

Annabelle Dress by 3RD FLOOR STUDIO
F oa Cardigan by FIG CLOTHING

Abela Long Camisole T003L by MOOVMENT
S akura by RAMONALISA

And then there’s me! I have had Short Bowel Syndrome for nearly two years. I have a central line going into my chest that my IV nutrition gets pumped through five nights a week. Now you may ask, how in the world do my bowels affect the sensitivity of my skin and the stiffness in my joints? I don’t actually know why, but my guess is that this is my body’s way of reacting to the trauma that it endured back in April 2015. The day after shooting these photos, I felt like I had bruises along my spine, I was waddling around the house like I was 9 months pregnant, and literally every inch of me hurt.

Capitaine Stripe Tee by CAMELEON
C erveza by RIEN NE SE PERD, TOUT SE CREE

Take It Easy by ANNIE 50

Archipel by CHERRY BOBBIN

Memories Dress by ANNIE 50

Babette by MOOVMENT

So then why did I put myself through it? Because doing this photo shoot made me feel good about myself. I felt gorgeous! We had so many laughs. We enjoyed ourselves. For one afternoon, we could forget about our illness and truly enjoy ourselves. And these moments really are few and far between when you’re constantly fatigued and aching.

I also wanted to show the world that it’s possible to be chronically ill and fabulous! We three ladies are proof of that.

Thank you so much for the wonderful contributions of the following:

Clothing – Flock Boutique (Store is in Ottawa, Canada. Everything shown on this blog and more can be found on their website. Direct links are embedded in the pictures.)

Photography – Vintage Bow Photography (Ottawa, Canada)

Makeup – Make-up by Julia Sangalli (Ottawa, Canada)

I couldn’t have done it without any of you!

02
Feb
2017

4 Reasons Not to be Envious of the Chronically Ill Life

categories: Chronic Illness, Fatigue, TPN

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:

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.

“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!

“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.

“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.

“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.

17
Jan
2017

Why Fatigue Is The Most Difficult Part Of My Day

categories: Chronic Illness, Fatigue

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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.

11
Jan
2017

How I Would Describe Myself vs How A Friend Describes Me

categories: Chronic Illness, Friends, SBS

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:

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).

07
Jan
2017

Dear Short Bowel Syndrome

categories: Chronic Illness, SBS, TPN

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,

03
Jan
2017

Recovering from the Holidays

categories: Chronic Illness, Family, Holidays, Uncategorized

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 3^rd 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!