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?
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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.
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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.
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Lead photo by Thinkstock Images
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