I know how hard it is to keep track of your many symptoms and then having to try to relay them to your doctor(s). It’s like trying to put a 1000 piece puzzle together within the 10 minutes you have with the doctor. Impossible, right? Because of this, I created I simplified symptom tracker that has helped me visually see my symptom frequency and prominence as well as allowing me to find out if my symptoms are associated with my cycle.Read More »
2018 has been my most difficult and challenging year to date. Emotionally and physically. There were many downs but a lot of good came from them. If I think about where I was last year at this time, I was filled with so much more pain, worry, and anxiety. Looking back, I never would have thought I would accomplish all that I did in 2018 and all of those things are worthy of being proud of and grateful for. Yesterday I wrote a list of everything that came to mind that I was proud of for accomplishing this past year. Writing it all down was liberating and shocking that there were quite a few. Even though 2018 has not been great for my health, it was a great year for personal growth. See below for my list.Read More »
I think all of us look for a reason or a cause for why a bad thing, like an illness, is happening to us. We want to know so we can find a way to heal or really even just to be able to put blame on something. But what if there is no clear reason?
If you’re in chronic pain, do everything you can to improve your body and your mind because yesterday I was shown that being pain free is possible with effort and determination.
I had a practically pain free day yesterday! I was able to do things I haven’t been able to do in 11 months. To be honest I can’t really explain exactly why it happened but I like to think it’s been my growth and journey to this point. I am doing everything in my power to have a healthy mind and body to try to get into remission. My diet has been really strict since the spring, I’ve had my endometriosis excised, I do pelvic floor physio therapy twice a week and stretch twice, even three times a day, and I rest when I know my body needs it. All these things I truly believe lead me to having a great day yesterday. Today on the other hand, my bladder flared right after a BM. Am I upset? No. If this was 6 months ago I would have said ‘hell yes I’m upset’. But throughout this year, I’ve learned about gratitude and that the real gift of gratitude is that the more grateful you become about your life, no matter how difficult it is, the more present you become. And the more present you become, the happier you will be. Read More »
It is Thanksgiving weekend here in Canada and this year I have a lot to be thankful for. One year ago, this long weekend, I was battling what I thought was a stubborn UTI. Little did I know that it was the start of this journey. The photo below was taken Thanksgiving, last year:
Looking at this photo, you wouldn’t know I was in pain. I was squeezing my boyfriends hand throughout the entire family photo shoot, just trying to breathe through the pain without anyone noticing. 🤦🏻♀️
During the week of Thanksgiving, we all tend to be more aware of the good things in our life. Mostly everything that everyone is thankful for are things they like. It’s easy to be thankful for those things; Pumpkin Spice Lattes are delicious, how can we not be thankful for them? But, what about the things we don’t like? What about the things that happen throughout the year that aren’t delicious, aren’t fun, and aren’t so great? What about the things that happen that make you feel frustrated and even angry? How are we supposed to do that? It’s easy to be thankful when we’re happy, when things are easy. But when things aren’t, it can be difficult to be appreciative. It’s really easy to focus on the negative aspects of a chronic illness. It’s easy for me to say that my pelvic pain has ruined the life I had in mind. But what I’ve come to realize this past year, is that it isn’t all bad. There are good things that come out of bad situations, so below are a handful of things I am thankful for this Thanksgiving despite my setbacks.
1. I am thankful for learning to appreciate the little things in life.
I’m talking about things like being able to laugh even though I’m in pain, feeling well enough to watch a TV show curled up with my boyfriend and dog on the couch and the joy I get from being able to see my nephew become a kind and gentle human because “Tia has a doi doi”. These things seem like nothing to other people, but to me they’re precious. I’ve learned that everything I’m able to accomplish and do even when I am feeling terrible is a blessing, even if it’s just showering and making a meal.
2. I am thankful for learning to rely on my instincts.
Without my pelvic pain, I would not have learned to trust myself. I’ve learned how important it is to listen to my body and mind and what it means to take care of myself.
3. I am thankful for my pain, for making me strong.
I think most people who live with IC/BPS can agree that strength is the last thing we feel, but honestly, I cannot think of anything stronger than living life like everyone else does while living in constant fear you’ll do something to cause a flare. It’s like living for two people, you and your pain. You know what you want to do, but your pain tells you to do the opposite. You’re in a constant battle with your mind. Anyone who can handle this on a daily basis is truly, incredibly strong.
4. I am thankful for learning that no matter how hard you fall, you can always pick yourself back up.
Every time I would have a debilitating flare, I would spiral to a very dark place, terrified that I would feel that pain 24/7. After learning ways to bring down a flare and realizing the pain always does subside, I taught myself to remind myself that it WILL get better and pick myself back up and start all over again.
5. I am thankful for learning that it’s okay to rely on others and ask for help.
Independence and self-sufficiency are good qualities. But sometimes we need to lean on each other when things get hard. I used to believe that enduring hardships alone makes you stronger, but I’ve now realized that it only breaks you down. Surround yourself with people who support you at every stage and ask for help when you need it. The people that belong in your life will stick around for the hard times, and the ones who don’t will inevitably fade away. And that’s OK. Different people come into your life for different reasons, and not all relationships are meant to be lifelong.
It has been a difficult year, to say the least, getting my IC/BPS, Endometriosis, and Pelvic Floor Dysfunction diagnosis. I have developed some anxiety as a result of this, which hasn’t been easy to deal with either. I know these are problems I could potentially struggle with for the rest of my life, but I find peace in looking at what good things, no matter how little, have come from this.
What are you thankful for this Thanksgiving?
Every September, IC patients around the world come together to raise awareness about Interstitial Cystitis, Bladder Pain Syndrome, and Chronic Pelvic Pain. One key goal of the 2018 IC Awareness Month campaign is to encourage education of pain specialists and medical care providers who encounter patients in crisis. The most vulnerable moment for bladder patients in pain is when they seek help during intense pain flares. Emergency room staff are rarely educated about IC/BPS and have accused patients of being drug addicts. They may have bleeding Hunner’s lesions. They may have muscles so tight that they are in urinary retention. These patients deserve a proper diagnostic workup and compassionate pain care.
“But you don’t look that sick”.
I heard that for the first time, from someone I have not seen in years and to be honest, they are right. Sometimes, I don’t look sick. In fact, it’s amazing what a little concealer and blush can do. It even confuses me on the days when my face is glowing and healthy, because it doesn’t pertain to how I actually feel inside.Read More »