My First Year Living With Chronic Illness
This August marks a milestone in my life. A year ago I ended up in the hospital a few times. I had not been feeling well for a while, but the long weekend in August my symptoms got so severe that I couldn’t even keep water down anymore. I was scared not knowing what was happening to my body, I was in the most intense pain I have ever felt and so far the doctors had no idea what was wrong with me. I remember sitting by myself in the ER, waiting and anxiously hoping for some answers. The doctors at the hospital did all kinds of tests and x-rays and gave me some medication to help relieve some of my symptoms but they still didn’t know what was wrong with me. Luckily they were able to fast track me into seeing a GI specialists a few days later. From there, I was scheduled for an endoscopy/colonoscopy two weeks later.
The day of the scopes my GI diagnosed me with ulcerative colitis (UC) right away. He showed me pictures from the scopes that looked like horrible ulcers lining my intestines and he told me I had a moderate to aggressive type of colitis and put me on anti-inflammatory meds immediately. I had no idea what he was talking about, what the disease was or how it would change my life forever. He also found some inflammation higher in my GI tract, which wasn’t consistent with UC so he booked me in for an MRI a few months later. That MRI confirmed that I had Crohn’s disease in addition to the colitis. Crohn’s and UC are both autoimmune system diseases and fall under the category of inflammatory bowel disease (IBD). In addition to these, I was also diagnosed with fibromyalgia, which can be triggered by chronic illness.
In the last year I have experienced chronic fatigue, chronic pain, severe stomach and back pain, cramping, joint pain, bleeding, nausea, vomiting, loss of appetite, diarrhea, constipation, malabsorption, B12 deficiency, dehydration, bloating, insomnia, headaches, dizziness, vertigo, numbness in my hands and feet, weight loss, weak immune system, UTI’s, IBS, fogginess (known as fibro fog), memory loss, problems concentrating, weakness, heart palpitations and panic attacks. And those are just the physical symptoms.
There are a lot of emotional and psychological symptoms that come along with chronic illness as well. It can be very overwhelming and discouraging knowing that there is no cure for what I have. These diseases are known as invisible illnesses because you can’t see them, which is a challenge in itself. If you saw me walking down the street you would never guess how much I actually suffer. Which is good in one sense because I wouldn’t want people to see what I am going through but it makes it difficult to explain to friends and family that cannot comprehend what you are dealing with. It makes you feel isolated and misunderstood.
I have been poked and prodded more times in the last year for blood tests and IVs than I have in my entire life. Not to mention other tests I have gone through and having to drink some horrible prep liquids (anyone that has had a colonoscopy or MRI on their stomach knows exactly what I am talking about). I have been on various anti-inflammatory meds, steroids and anti-anxiety meds over the last year as well as numerous other supplements. I, the girl who has always been afraid of needles, now give myself B12 injections weekly.
The reason I am writing this post is not for sympathy or pity. I don’t need that. There are so many people out there fighting much worse battles than I. I felt compelled to write this for two reasons. 1) To help create awareness of invisible illnesses (considering I have three of them: Crohn’s, UC and fibromyalgia) 2) To give hope to others that are fighting their own battles right now, whatever those battles may be.
I remember when I was first diagnosed with the UC and I started googling for information about the disease. I went on Facebook looking for groups hoping to find positive words of encouragement. Unfortunately I found the opposite. I was inundated with people posting about how horrible these diseases were and how they had been fighting their battles for years with little to no improvement. I searched for some glimmer of hope but never found any. I stopped going on those “support” groups because I always felt so discouraged and deflated after reading them. Honestly I would end up curled in the fetal position crying for hours because I thought this would be my life forever; living in constant agony and no light at the end of the tunnel.
Those of you that know me, know that I am a pretty determined person. When I put my mind to something, I don’t usually give up. So I was determined to not be defined by any of these diseases. Yes I have had many challenging days, even weeks, in the past year and probably will for the rest of my life but that is not who I am. I am not defined by Crohn’s disease. I am not defined by ulcerative colitis. I am not defined by fibromyalgia. What defines me is my ability to persevere through adversity, to see my challenges as an opportunity to grow and live the life I was meant to live and to help others on their personal healing journeys.
Exactly one year from when I initially ended up in the hospital I can say that my Crohn’s and UC are in remission. That I am no longer on any steroids or anti-inflammatory medication. Does remission mean I am back to “normal”? No. Do I still battle chronic pain and chronic fatigue on a daily basis? Yes. If I do things on back-to-back days do I end up recovering in bed for a few days? Yes. My new normal is not what I am use to but that is ok. Through all of the pain I have grown into a wiser version of myself that understands the importance of self-care. It has made me more present and consciously live in the moment. When you spend a lot of days in bed because you can’t move, you really appreciate the good days. You soak it in because honestly you don’t know how you will feel the next day. People take their health for granted all of the time. I was one of those people! But know that your health is the most valuable thing in the world because without it, nothing else matters.
Through all the health issues in the last year, it was also a year filled with amazing memories. One of the highlights of my year was being featured on the front cover of Metro Toronto with my godson Nicholas. I had initiated an online fundraiser on a platform called Tilt and we got an amazing reception from media wanting to cover his story. In the end we raised significantly more than our initial goal and the family was able to make even more changes to their home to make it more wheelchair accessible for Nicho. It was such an incredible blessing to see how the community came together to help make a huge difference in the life of such a special little boy. The love and support I experienced through that process was overwhelming and something I will never forget. I was truly humbled.
In the last year I also went back to school to do a degree in social and digital media at UofT and made some amazing new life long friends. I got to spend a lot of time with my precocious baby niece who literally made me laugh every day no matter how I was feeling. I started my self-care and healing journey that includes daily meditation and practicing energy healing. And I just launched a brand new website featuring three businesses that I am starting: an energy healing practice, freelance writing and Arbonne business.
Everyone goes through challenges in their life. There will always be highs and lows but I truly believe the most important thing is how we face the hard times. Rather than focusing on the negatives, which is so easy to do, try focusing on the many blessings you do have. Because trust me, they are there. Even if you can’t quite see them through the fog of your trying times, know they are still there. Don’t give up, keep looking for the good and pretty soon you will find it.
Although I may not be exactly where I want to be in my life right now, it is ok. I know that I am exactly where I am meant to be at this very moment. I still fight every morning just to get out of bed because I hurt and don't have much energy. But trust me, I will get out of bed. And I won't stop fighting because I know what I am capable of achieving. It may take me a bit longer, but I know I will get there. Whatever battles you may be fighting, know that you have the power to do anything you put your mind to.