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Why Fatigue Is The Most Difficult Part Of My Day

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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.

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How I Would Describe Myself vs How A Friend Describes Me

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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).

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Dear Short Bowel Syndrome

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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,

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