Tag: chronically ill


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!

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Jan
2017

Recovering from the Holidays

categories: Chronic Illness, Family, Holidays, Uncategorized
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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!

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Apr
2016

Grieving This Last Year

categories: Chronic Illness, Grieving, warrior

A year ago today, my entire world was about to change forever and I had no clue that it was about to happen. What I thought was a terrible stomach ache was actually my rapidly body dying.

I was brought into emergency surgery after a couple visits to the emergency department. They had to cut me from breast bone to pubic bone so they could see what had happened; the surgeons had no idea what they were about to find. My small intestine had managed to twist itself and had become necrotic. From this surgery they ended up removing a large portion of my small intestine due to the fact that it had died. If they had waited much longer, I would have died along with it.

I was brought out of sedation two days later. The doctor (who desperately needs to learn bedside manner) abruptly told me that “you will never eat or drink again and your quality of life has been severely diminished”. There are no words to describe how I felt. I was beyond devastated. Anyone who knows me knows how I love food. I love cooking it, eating it, hosting people for meals. And I had just been told rather abruptly, that that part of my life was gone.

They didn’t know if I would survive either of my surgeries or my time in between them. There were several times it was very questionable. I ended up needing the second surgery as a result of the fact that I wasn’t getting any better, in fact my health was actually getting worse. During the second surgery, the surgeon discovered that my intestines had continued to die, and it was necessary for them to remove even more than they already had. At the end of it all, I was only left with 5cm of my small intestine and 36 inches of my large.

I was stuck in bed for four weeks, after which I had to relearn how to walk on my own. For every week that you are bedridden, you lose 10% of your muscle mass, so this was quite an undertaking! First time I walked post-surgery I took five steps towards the door, turned around, took five steps back to the bed and then slept for three hours. I had never been more exhausted in my life.

I had to learn about my new body. I had to learn about the consequences of having no small bowel. I had to learn that something as normal as having a drink while eating, chugging water (when you’re literally always dehydrated that is ALL you want to do) or even staying out that extra hour therefore making me overtired would cause me to be violently ill.

I had to come to terms with the fact that I would never go back to the group home work environment. That I can never travel for more than a week at a time because of the expiration dates on my IV nutrition. I’ll never be able to run again. Bike again. Swim in a lake, ocean or public pool again. I couldn’t even read up until last month because I was too fatigued to concentrate on anything longer than a magazine article. And the most painful of all, which I have asked my surgeon about on multiple occasions hoping for a different answer every time, is that I cannot get pregnant again.

I have had to grieve so many things this year, and I still am and probably will be for a long time to come. My heart is constantly aching. I wake up every morning hoping that it was all a horrible nightmare. I so look forward to the day that I can finally accept my fate.

I have had major anxiety all week leading up to today. The one year anniversary of my surgery. My own personal D-day. Today is a lot more painful than I ever thought it would be. I am going to allow myself to grieve today. To spend today in self-pity and mourn my losses.

But tomorrow — tomorrow is day one in my second year of being a chronically ill woman, and I’m going to surmount it. If nothing else, this year has made me more fierce, more passionate, more of a fighter, and more stubborn than I’ve ever been. I will own this new life. I will conquer it. This is my new life. Time to start living again.

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Apr
2016

Call me Mara: Battling with Bitterness

categories: Chronic Illness

So the two women went on until they came to Bethlehem. When they arrived in Bethlehem, the whole town was stirred because of them, and the women exclaimed, “Can this be Naomi?” “Don’t call me Naomi,” she told them. “Call me Mara, because the Almighty has made my life very bitter. I went away full, but the Lord has brought me back empty. Why call me Naomi? The Lord has afflicted me; the Almighty has brought misfortune upon me.” Ruth 1:19-22

I think we’ve all more than likely had something happen to us that has shaken things up in our life. Whether big or small, there always seems to be an obstacle that pops up, and it always seems to be at the most inopportune time. When everything happened to my health last year, I was mad. Like REALLY mad. After years of struggling with my weight, I had finally lost (literally!) a whole person worth of excess weight — I lost 151lbs! I had met an AMAZING man, we got married and bought a beautiful house just outside of the city, had two dogs and we were blessed with the most beautiful baby girl. I swear I’m not biased! She really is the most beautiful baby ever ;)…. And then literally overnight, my health went spiraling down the toilet. My dreams of traveling, giving birth again, going back to school one day, etc. etc. – they all went down the pooper with it.

It would have been so ridiculously easy to become bitter without even realizing it. Thinking you’ve been dealt the worst hand and making sure everyone knows it can become second nature. Bitterness can slowly and subtly creep in on every aspect of your life and turn the sweetest things sour. Lately I’ve been reading the book Ruth in the Bible, and I feel for Ruth’s mother-in-law, Naomi. She lost her husband and both her sons. She told people to stop calling her Naomi (which means pleasant) and to call her Mara instead (meaning bitter) because she had had a harsh turn of events. She couldn’t see past what had happened and thought God had brought this down upon her. I get it. No, no one died in my life, but a huge part of my life did.

Roughly three weeks after my initial surgery, a nurse was telling me about how she had to come back to work early from her maternity leave. She was complaining that she was sore, it was a long shift, and on and on and on. I looked right at her, and told her I was the wrong person to be complaining to! I hadn’t even walked in three weeks. I was bed ridden, on a ridiculous amount of medication, had lost a significant portion of my organs and was missing my family terribly. I told her she was healthy, had a good job, and she needed to stop whining. In reality I probably (almost certainly!) was too harsh on her. I told a friend about it the next day, and he quickly called me on it. He told me that I can’t let myself become that bitter person because no one will stick around no matter how crappy my situation has become. That truth hit me hard, but that piece of wisdom has stuck with me all year. Not that it’s a bad thing to vent, everyone needs that. But there’s a huge difference between having a bad day every once in a while and being in a permanent state of crabbiness. Through this I also realized that I want people to still be able to come to me without fear that I’ll throw it back in their face. We all have our struggles – big or small, and they are always significant to us. To have someone belittle those issues is never pleasant.

I’m not saying I’ve perfected never being bitter, trust me I’m far from it. I have my days like everyone. There are days where it’s hard to see things in a positive light, but it’s so important to push through and find the sweet in every day. For me, that’s my family and my friends. No matter what kind of mood I’m in, they make me smile. I’ve worked really hard at not being bitter and angry all the time. It is literally a moment by moment struggle for me. To be honest, I am definitely crankier than I was…for those of you who know me, you don’t have to comment on that point! If I’m not feeling well, I get snippy very quickly. But I’ve come a long way from where I was, and I’m really trying not to let my health sabotage my relationships and my perspective on other people’s situations.

Naomi’s daughter-in-law Ruth stuck by her side even though rightfully she could have returned to her tribe. Ruth got married and had a baby boy. Naomi walked through her dark time and there was a light at the end of the tunnel. She was a grandma! Picture Naomi, rocking her grandbaby, tears streaming down her face. She had a rough go, but finally, all she had dreamt of was in her arms. I bet that she could literally feel the bitterness melting away. She had become Naomi again.

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#SheReadsTruth #SheSharesTruth

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Mar
2016

Moving On

categories: Uncategorized

Have you ever felt like everyone has moved on after something huge has happened, but you haven’t yet? That feeling like you’re getting sucked down by this enormous event — as if you were stuck in quicksand — and everyone just keeps walking and they don’t look back? They just assume you’re keeping up the pace with them? Well, that’s how I’ve been feeling.

I realize that my being ill will obviously affect me in a very different way than it will affect anyone else. I say obviously, but when someone is in a situation where they are dealing with something of this magnitude what seems obvious to them may not, in fact, be obvious to those around them. At the end of the day, all I want to do is move forward in this journey, just the same as everyone else. Instead, it seems as if I’m stuck in this huge pit of mud and I have no clue how I’m going to get out any time soon.

I’ve had a difficult time finding a balance between trying to live a “normal” life and actually talking about what I’m feeling and what I’m going through. Should I actually talk about what’s happening in my life, or would it be better if I just ‘smile and nod along’ as if nothing has changed? How much do people REALLY want to know about what’s going on in my life when they ask me how I’m doing? I don’t want to lie and say I’m great (an answer I haven’t given in roughly 11 months), but I also don’t want to be viewed as a ‘Negative Nancy’ and always be the one bringing the mood down when I give a more realistic answer to such a simple (for most) question. My go-to answers of late have been either a simple “fine” or “oh you know, just taking it one day at a time.”

I guess I’m finding it challenging, because everyone seems to have gone on with their lives. Meanwhile, I face this every single day. I can’t escape the reality that things have changed. Even if I am having a good day pain and energy wise I am faced with the reality that my life will never be the same. At the end of every day, I still need to head upstairs approximately 45 minutes earlier than whatever time I figure I will actually want to be in bed. That’s about how long it takes me to hook myself up to my IV bag, give myself my injection, take my medication and then after all that, go through my normal bedtime routine. My good, normal day has all of a sudden come to a halt and I have been brought back down to reality.

Just when I sometimes feel like I’m maybe finally getting used to this new normal, something happens to make me realize all over again that my life has been forever changed. Something as simple as taking my daughter to a jungle gym for 1 hour sent me to bed at 6pm that day, and took me 48 hours to recover from – making me realize yet again that my life will never be the same.

Allow me to wrap this up by clarifying that I don’t expect people’s lives to revolve around my situation. I would never want it to be that way – people all have their own lives to live. I just want to get unstuck from the muck, catch up and move on with everyone else.

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