Wow, what a week it’s been!
On Monday, I played soccer mom and took both kids to my son’s soccer practice. Tuesday, I spent all day studying for my final exam that night (I was taking a course at Humber College). Wednesday and Thursday, I spent the evening at home with the kids.
Friday, I woke up and felt ruined. Let me put this into perspective.
Since being off work in October, when my flare-up was at its worst, I haven’t been the hands-on wife and mother most women would like to be. I don’t do bath time every night. I don’t drop off the kids or pick them up every day from school. I don’t make dinner every day. I rarely entertain the kids on my own. It’s just too exhausting for me.
My husband really is super dad. He does it all. Works all day and helps take care of the kids in the evening. We share bath duty most nights, and if the kids wake up in the middle of the night, he gets up. Oh, and those 6 a.m. wake-up calls from our youngest — he gets up first. Unfortunately, having three evenings alone with the kids this week caught up to me.
Crash and burn.
I was great in the moment! My kids had no idea mommy was tired. We danced and sang on the car ride to soccer. We danced and played music each night during bath time. We played dress-up. We watched movies while sipping hot chocolate we made, and I even found some patience and energy to play PlayStation 4 with my 4-year-old each night – again, rarely happens!
I’m so proud of what I was able to do! I had the energy, the strength and the patience to get through it. Until Friday morning, of course, when I woke up and my body felt as though a truck ran over it.
This is what life with Crohn’s disease is all about — ups and downs. Bursts of energy and then falling rocks. So, as I write this article, sitting on the couch, where I’ve spent the entire day so far wrapped in two blankets, I think about what the future holds for me. How will I feel after I’m finally out of this flare-up? I hope and pray I can maintain a good energy surge throughout the day and no longer require “down days.”
Today, I’m grateful for my husband who woke up at 6:30 a.m. with our children, after getting home at 12:30 a.m. I’m thankful for his flexibility with work to take the children to school and pick them up today. I’m thankful for him being home tonight with us. And, most importantly, I’m thankful for his continued patience with me.
How do you handle being a parent with Crohn’s disease?
We want to hear your story. Become a Mighty contributor here.
For my 18th birthday, I got a car, a family dinner at my favorite restaurant, and the lifelong illness of Crohn’s disease. Initially, I was unsure how to react to this unexpected “gift.” I travelled from specialist to specialist with my parents, learning about my treatment options, pain management, side effects, and more. No one knew how to process this information, least of all myself. Essentially, I didn’t know what I was in for. When my doctor told me my illness was an 8 out of 10 in severity (10 being the worst case he’d ever treated), the magnitude of what I was experiencing —and would be experiencing for the rest of my life — began to sink in. That was when two questions formed in my mind, questions I continue to ask myself every morning: How is this disease going to change me? Can I still live a full, happy life with a chronic illness?
The five stages of grief are denial, anger, bargaining, depression, and acceptance. I used to believe these stages were in sequence and that acceptance would, at some point, be reality for me. And yet today, about a year and a half after my diagnosis, I continue to leapfrog between the first four stages — and have not once reached the fifth.
Good things are still in my life; I can enjoy a meal, an event, a concert. But my illness is always with me. It is the first thing on my mind when I wake up, the last thing on my mind when I go to sleep, and pops up in my head every five or so minutes throughout the day. There are the physical aspects: pain, discomfort, IVs and blood draws, and there are the mental aspects: flashback nightmares, anxiety, depression. It is a combination of these things that makes me unable to give a simple “yes” or “no” when I ask myself every morning if I am able to live a full, happy life. As with most things, my chronic illness is not black and white.
My illness has given me some positive memories and attributes. I have become more empathetic to peoples’ behaviors and actions; I have learned to recognize discomfort, to stop asking questions when I see it is bringing someone down. However, that is because of the many people I have encountered who have not given me the same courtesy — who have continued to push, to ridicule, to ask “why” when I don’t owe them a “because.” I have connected with people from different states, even countries, who also live with various chronic illnesses. I’ve made wonderful friendships through this, yet I always remember the origin of those friendships were of commiserating over mean doctors and nurses, side effects, and pain. I met Harry Styles through the Make a Wish foundation. He drew me a tattoo; that’s something I can look down at whenever I choose if I want to remember that very happy day. But I also remember the reason that meeting happened was because my mother called the foundation as I was lying in a hospital bed, discovering for the first time what a 10 on the pain scale really meant.
There are some positive things associated with my illness, it is true. But most of them go hand in hand with negatives. I’ve gone through the motions of attempting to move to acceptance since everyone tells me acceptance comes with a greater sense of content, mental well-being, and happiness. Although I am wary of opening up about my illness, since I still feel ashamed of it and regard it as a weakness rather than simply an unfortunate coincidence, I’ve done my best to talk about it to friends, significant others, and therapists. I’ve read success stories of people with Crohn’s disease, like Kathleen Baker, age 19, who just this past summer won the silver medal in swimming at the Rio Olympics. I’ve listened to more personal examples: acquaintances, friends, and doctors will tell me about their friend, their wife, their kid, their patient, all of whom have Crohn’s and are still doing good, even great things. These things are encouraging, uplifting. It boosts my spirits when I see someone with the same illness succeeding at high levels, simultaneously raising awareness for the disease and achieving personal success.
Yet, Crohn’s disease is highly individual. Each Crohn’s patient has a different severity level, a different reaction to treatment plans and medications, and depending on those things, a different attitude to how they approach their daily lives. And oftentimes, I’m in bed for two days because I caught a cold that someone healthier may have been able to just shake off, while my immune system, weakened by the immunosuppressive chemotherapy drugs I’m prescribed, turns a common cold into a high fever and throat infection. Or sometimes, I’m in class experiencing severe abdominal pain and worrying whether or not I should leave the class, and if I do, whether it will affect my grade and in turn my success at school and my ability to have a career. It’s occurrences such as those that leave me thinking no, I cannot live a full and happy life with this disease.
A year and a half after diagnosis, I still have not found a medication that has improved my quality of life or reduced my symptoms to a significant degree. It is a slow, downward spiral; I’m sliding down a fireman’s pole, and every inch I descend I feel less optimistic and more hopeless about what my life will look like in a month, a year, a decade. And I’m not the only one feeling this way. There are hundreds of online forums filled with Crohn’s disease patients, and for every one experiencing remission, relief, and success, there is one experiencing a flare, a dead end in treatment options, and, again—hopelessness. It is why one out of every 10 suicides is linked to chronic illness, according to several studies conducted by the British company Demos. Crohn’s disease patients — and chronic illness patients in general — often feel despair, anger, and hopelessness with their situations, simply because they no longer hold control over their own lives. More than anything, I believe it is the loss of control that leads to so much distress. We all want to be in control — of our meals, of our relationships, of what we put on in the morning. Sometimes, the loss of control a chronic illness brings makes meal choices, outfit choices, and relationships impossible. It may start small — like a doctor telling you that you should avoid dried fruits and nuts since they’re hard on your stomach. However, it is the gradual loss of small pleasures like being able to eat a handful of almonds that leads to such great frustration and decrease in the quality of life. When diagnosed with a chronic illness, I wasn’t told it’d be a constant physical and mental battle, a constant chronicling of symptoms and problems, a loss of control in how I felt and looked. However, I wonder if it would have even made a difference if I had been told. At this point, I believe the only way to truly understand the weight of a chronic illness and how it will affect your life is to actually have one — and perhaps that’s why I wasn’t given a warning. To understand, I had to experience.
Looking back at this year and a half, I recognize now that I have not done what the average person believes a “model” chronic illness patient does: accept my illness, talk about being lucky to be alive, smile through the pain. I say this sarcastically because I don’t believe there is such a patient out there. However, I do recognize that for me to look in the mirror one morning and say, “I am living a full and happy life” and truly believe it, I need to start accepting. Perhaps my downfall is that I don’t want to accept this illness. I hate it. I hate what it has done to me and how it has affected my opportunities, my education, my friendships and my relationships.
Because of this hate, I don’t want to look in the mirror and fully accept that I have Crohn’s disease. Yet, I know I won’t be able to look in the mirror and say, “I am living a full and happy life” until I say “I have Crohn’s disease and it is unfortunate and horrible, but this is what I have to work with now.” And truly: I have no other choice. I wish I could change my body, cure myself of my disease, and pretend it was all a bad dream. But if there’s one thing I’ve learned in the past year and a half, it is that life is often a bad dream; if I don’t work and breathe through my dream, it will continue to negatively affect me.
Because of the way my “downward spiral” has been going, I have lately been leaning towards the answer “no” — that I will never live a full, happy life with my illness. Just this past week, however, I had a performance with my chamber music group, part of my requirement of being a music performance major at school. To achieve this performance was no small task for me. I showed up to many rehearsals feeling sick, had to miss others because I was too sick, and was constantly battling nerve pain in my hands from botched IVs, making it extremely difficult and painful to play. I plowed onwards, however, because some part of me knew it would be worth it in the end. The performance pulled off extraordinarily well. I played all my notes, as did my chamber partners — and not only that, we communicated and synchronized and worked together as a group, experiencing and enjoying the music we made more than we ever had before.
After the applause died down, I went to the changing room and cried — partly because my hands were killing me, partly because I had achieved such a wonderful performance. It reminded me why I am here, why I continue to persevere — successful, joyful moments like that performance are a sign of encouragement and a peek at what the future might hold for me.
The future won’t ever be easy for me, and I will constantly encounter roadblocks. My illness will never disappear. There is no “getting better” in my future. Although I rationally know that and have known it for a year and a half, my mind still has not processed that reality. I don’t know for how much longer I will be unwilling to process this information. I can’t say with conviction “I am actively working on accepting my illness to improve my quality of life” although I know that is what needs to happen for me to heal. But thanks to special, shining events and moments that still happen to me — like that concert — in spite of all the frustration and hopelessness I’m currently experiencing, I do believe that with time and work, I will one day be able to live my life to the fullest and happiest possible, not in spite of, but with my chronic illness that I will learn to accept.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by Gromushka
Kathleen Baker made it to the 2016 Olympics despite her Crohn’s Disease.
Saturday night my husband Richard and I got all dressed up and went to dinner for his office Christmas party. This got me thinking about how I, a person battling an active Crohn’s disease flare up, handles attending events. Normally, I would be excited and eager to get out of the house and spend time alone with Richard. Last year we attended many work-related Christmas parties together and I loved meeting new people and visiting new places. This year, however, there are other things going through my head besides who’s going to watch the kids.
The list goes on and on!
You have to understand, as much I want to be around family and friends during the holidays, it’s completely draining! Mentally, physically and emotionally.
Let me explain.
Mentally, my mind doesn’t stop prior to the event. All those questions run through my mind for days. As well, it’s mentally exhausting keeping up with conversations and stories when my mind isn’t as sharp as it used to be.
Physically, it takes me hours to get ready — and I don’t say that lightly or as a vanity issue. It’s physically exhausting for me to take a shower, dry my hair, get dressed and then to do my hair and my makeup. My body requires me to take several breaks between sessions. I need to sit, relax, perhaps have a small bite to eat. For this particular event, I took a shower in the morning. I did my makeup at 1:30 p.m., fixed my hair at 5 p.m. and got dressed at 6 p.m., for a 7:30 p.m. event.
Emotionally, it’s draining because there are times I am so tired, I struggle to talk to people. I have a hard time starting the conversation and maintaining it. I want to be social, I want to meet new people, but it’s tiring. I sometimes feel I need to put on a show, put on a smile and pretend to be happy, when really, I’m counting down the minutes to when I can get back in bed.
Perhaps this sounds harsh. I don’t mean to offend anyone or make it seem like I don’t want to be around you. I love seeing my friends and family and spending time with them and I am looking forward to the next three weeks of parties and gatherings.
If I’m quiet, not engaged in conversation, it doesn’t mean I don’t want to be there, just means I’m slowly coming down from the excitement of the night.
If I ask you to repeat your story a few times, or clear it up for me, it’s not because I’m not paying attention, it’s because my mind can’t keep up.
If I start laying down on the couch, it’s not because I’m bored, my body just needs to rest.
If I’m not eating your delicious looking meal or dessert, please don’t be offended, I just know there are trigger foods in there that I can’t eat.
If I’ve disappeared for too long, or several times throughout the evening, it’s not because I’m avoiding you, or conversation or I’m bored… I’m probably in the bathroom.
If I leave early, don’t be offended, I’ve just reached the point where my body says, time to go.
One night out for most can be as easy as,
But as you can see, for me, it means a lot more than that.
We want to hear your story. Become a Mighty contributor here.
Lead photo by Thinkstock Images
Food. It’s only a four-letter word, but did you know it’s actually one of the most complex words in the dictionary? Really, it’s true! Well, for some of us anyway. Let’s get one thing straight: I. Love. Food. I love food. I love food!
Food. We can’t live without it. Literally – we need it to function. Without it, we would fade away to a shadow. But aside from being as necessary to us as oxygen, it is also a pleasure – an immense pleasure! We usually eat whatever tastes delicious to us, whatever makes our taste buds scream with delight. How magnificent that every day – at least three times a day – we get to consume something that elates us. No matter what is going on during the day, we can always take pleasure in those big and wonderful decisions of what we are going to eat!
Food also has the capability of not only helping us exist, but allowing us to exist in ways that are either beneficial or detrimental to our physical selves. (Now it starts to get really complicated…brace yourselves.) Food can have the ability to help us gain or lose weight, depending on what and how much we eat. Particular foods give us nutrients, minerals, proteins and fats that can help alleviate particular ailments the body is presenting.
“Let food be thy medicine and medicine be thy food.” – Hippocrates
Spot on! We had this wisdom B.C.… so why has it all become so complicated? Personally, I think that with the introduction of preservatives, chemicals, faster/more high-tech ways of producing food for the masses, our food has lost its natural and organic healing properties. Instead it has turned nutrition into a confusing state of affairs, promoting health concerns, bad digestion, bacteria, etc. rather than health. And perhaps that is why our culture is now turning back towards the organic way of life. However, even with an organic lifestyle, food is still not so simple. Food can be confusing, especially if you have particular ailments.
The thing is, when you’re living with Crohn’s, food does become a major issue. It can sometimes help, but it can also hinder and cause pain. I like to think I can eat what I want. You know, everything in moderation? But some foods have more of an effect on the gut than others…
Like ice cream. Darn it! The one constant with a lot of these health diets seems to be that sugar and particular dairy (milk especially, though hard cheeses and some yogurts seem to be OK) can disrupt your system. I always find that when I have too much “naughty” dairy it affects my digestive system. Some cramping and bloating will also be on the dessert menu.
Like alcohol. Gosh dang it! To crack open a bottle of red with someone, kick back and enjoy… how lovely! Until you find you’re running to the bathroom a bit faster than usual.
Like chocolate. Will you stop already?! Indeed, this well-known favorite is similar in effect to ice cream – the combination of sugar and cream seems to irritate the digestive system. Eating too much can leave me feeling uncomfortable. But who’s to stop me, right? I’m not a quitter (…when it comes to indulgence, that is).
All these delightful foods seem to have more of an effect during a “flare-up” of Crohn’s (when your digestive system is somewhat inflamed/ulcerated/active with disease). When consuming these things, your system is far more sensitive than it would be if you were in remission and without the active disease that causes bloating, an increased need to make a mad dash to the nearest bathroom and usually some cramping and pain.
There have been times when I was symptom-free (this doesn’t mean disease–free – the disease was just inactive) when I was having dinners with friends, drinking the wine, eating the brie cheese, having the chocolate (70 percent dark, thank you very much – yum!) and my system didn’t react at all! Other times, like now unfortunately, my system is very sensitive. I watch what I eat more because when the digestive system is sensitive, you can immediately feel the pain, cramping and bloating after eating something. Since I have also had a lot of surgery in the past and there is active disease around the scar tissue in parts of my small intestine, I am now finding it beneficial to eat foods that are easier to digest, such as bananas, oatmeal, eggs, well-cooked vegetables, fish – wholesome, but gentle on the gut. (However, I will have a delicious gluten-free chocolate brownie from my local bakery on occasion, and come the holidays I will be having an extra serving of dessert!)
We often try different diets if we have health concerns: paleo, vegan, vegetarian, ketogenic, gluten-free, sugar-free, juicing, “The Maker’s Diet,” “Eat Right 4 Your Blood Type,” “The Specific Carbohydrate Diet”… Not to brag, but I have tried them all. And those are only a handful of what’s out there.
When presenting a lot of flare-ups in my early 20s, my then-boyfriend and I researched “The Specific Carbohydrate Diet” and “The Maker’s Diet.” Both very wholesome, beautiful ways to eat – for anyone. But especially for people with Crohn’s. Both of these ways of eating were about consuming foods that were grain-free, mostly dairy-free and sugar-free, and full of nutrition, protein and healthy fats. Beautiful! However, what if you really want to bite into a banana muffin or sip on a chocolate milkshake? Sorry, not allowed. In the intro of “The Specific Carb Diet,” the author Elaine Gottschall expressed that you can’t deviate from this diet at all. Not even a bite of something “naughty,” because that one bite could affect the chemical balance in your body and boom: you could trigger a flare-up.
Trying to sustain yourself on one of these health diets long-term is difficult, but I did it – I stayed on the Maker’s Diet for a few years. I believe this way of eating really does make sense for my body. And it helped me. I wasn’t totally symptom- or disease-free, but it helped.
So why not stay on this diet 24/7? Because I’m weak. I love chocolate. I love red wine. I love pastries. I love coffee. I love pizza. I love going out to dinner, not worrying and eating what I want with those I love. Dieting becomes especially difficult during the holiday season when you want to kick up your heels and throw all care to the wind. Heaven help me!
I wish food wasn’t such an issue, especially when I love it so much! But, this is life with bowel disease. It’s going to be a constant conversation with yourself: “Should I? Or shouldn’t I?” One thing is for certain with Crohn’s disease: you are always learning! You’re constantly checking in, listening to your body and discovering that what may work for you when you are symptom-free may not work so well when your disease is active.
Ah well, c’est la vie. If only that four-letter word was simple.
I’ll tell you what, though – when you do go for that food you know will cause you a little grief in the near future – perhaps as a treat over the holidays – my goodness, you savor it.
And when you see that person sitting down to an ice cream, making love to it with their eyes, slowly taking a bite and groaning with pleasure… as awkward as it may seem, take a step back and tip your hat, for that person is enjoying every second of that creamy sweetness, perhaps with a sacrifice in mind.
Anyway, just some “food” for thought. Happy Holidays, all! May you enjoy every mouthful of your sinful delights.
We want to hear your story. Become a Mighty contributor here.
Image via Thinkstock.
Real People. Real Stories.
We face disability, disease and mental illness together.