5 tips for finding flexibility within yourself while battling chronic illness

I’m a planner. Always have been. Always will be. But, as my grandmother always used to tell me, “Tell God you have a plan, and he’ll laugh at you.” That seems to be the case all too often for those of us in the chronic illness community. If you’re like me, each flare up and hospitalization has occurred completely out of the blue. I’ve bIMG_2413een blindsided each and every time. I’ve worked a full day, trained for a half marathon, taken a road trip…you name it…and BAM…hello, bowel obstruction or abscess.

So, how can we go about our lives as normally as possible with the ever-looming dread of the next setback and flare? It’s easier said than done, but it is possible. I’ve battled Crohn’s disease for nearly 13 years, this perspective and knowledge took time for me to gain. When I was first diagnosed, flexibility and patience weren’t in my vocabulary. But, like all things in life, time helps us heal and time teaches.

Here are five helpful tips for finding flexibility while taking on your illness:

  1. Do your best to live in the now. Rather than focusing on the past hiccups in your journey, live in the moment. Feeling well? Capitalize on this. Go outside, meet up with friends or family, get some exercise. Natalie runningIt’s these fleeting moments of invincibility that provide us with a chance to live like the rest of society. It may seem simple, but recognize these moments, verbalize them with loved ones. Celebrate the small joys, that are a big deal.
  2. Stop beating yourself up over what could happen. Many people in the chronic illness community talk about how common post-traumatic stress disorder (PTSD) is. We’ve all faced some challenging, debilitating moments that have shook us to our core. Of course we don’t want that to happen again. Don’t place blame on yourself. Instead, give yourself credit for all you do on a daily basis to manage your disease—whether it’s watching your diet, taking medication or making an effort to practice self-care.
  3. Put your health first, don’t push yourself to the brink. Nobody likes to cancel plans or be a no-show at big events and social gatherings, especially when you’re actually looking forward to them. But, by putting other people’s needs before your own and worrying about what people might say or think of you—you’re only putting yourself in harm’s way. Be mindful of how friends and family members react when your disease is symptomatic. Are they supportive and understanding, or do they make you feel bad for bowing out? When you’re too tired, in pain or struggling, that’s a message from your body telling you to slow down. Please listen.
  4. Roll with the punches of treatment. Trying to wrangle a chronic illness into control is exhausting. It’s constantly a chess game. When you no longer respond well to your biologic, when you’re put on a new medication, when you’re told to try eliminating sugar, dairy, gluten or all the above…try to give everything a shot and a chance. IMG_0230Think about the risk vs. the reward. It’s emotionally draining when nothing seems to be working or helping to ease your pain, but, staying positive and open helps us all physically, emotionally and mentally. Keep an open mind with your healthcare providers and have two-way communication. Educate yourself, learn about the clinical trials and treatment options out there—be your own best advocate. Connect with others who are living your same reality. Trust in other peoples’ journeys, but recognize your journey is unique and so is everyone else. Each person’s IBD presents differently.
  5. Be the first to admit when you need help. IMG_0077By telling someone you are struggling, hurting or worried, you are not showing weakness. You are not complaining. If you are going through a dark time and wonder how you’re ever going to overcome a current setback, lean on your support system without hesitation. Internalizing your pain will only make matters worse. You’re still brave and resilient, no matter what.

5 Tips for dealing with grief while battling IBD

Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.

IMG_2516When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.

On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.

It pains me to write and to say those dreadful words. photo by J Elizabeth Photography www.jelizabethphotos.comI have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.

What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? IMG_9748What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?

I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.

  1. Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
  2. Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
  3. Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal. IMG_4352
  4. Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
  5. If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.

Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.