It’s been a really trying and hard 9 months. I first got sick (this time) in June 2016. When things were at their worst, I was unable to eat and lived on soup broth and half a chocolate milkshake each day. I was losing weight, spent most of my time sleeping, and a trip up the stairs would make me nearly faint each time. I would take a short outing every few days, but had to use a motorized scooter and could only stay out for a tiny amount of time.
I really thought that I would go to Mayo Clinic and get a diagnosis and then be able to be treated, cured, and move on. That was not how it happened. I have now taken 4 trips to Mayo Clinic in just 5 months and while I have received a diagnosis (several), there is no cure and treatment options are minimal at best.
The first 3 months that I spent so much time sitting, laying, and resting I would tell myself that I was recovering and letting my body heal. It was not reality for me that my body was not healing and that there would not be a recovery in the traditional sense. I found comfort and hope in the idea that by letting my body rest, that I would make it to the other side and my body would do what it needed to do and that surely I would be back on my feet and back to my busy and energetic lifestyle.
In January, I learned that my diagnosis is chronic and progressive. Resting was merely what I needed to function and to keep my head above water. But rest did not mean healing or recovery. It simply meant rest…….and accept that it was how it was going to be.
Yes, I have found some really great treatments that now make it so that I can eat and be out of bed and do some normal things. But they sure don’t put me at 100%, and these treatments never will. It is simply the best option and the only option for treating my symptoms. Accepting this fact and admitting to it has been the hardest part of all. For the most part, I am really positive and easily find the best in the situation. But I won’t lie to you……I have cried MANY tears while thinking “is this the best it gets. Is this my life now?” That is a really really hard pill to swallow.
Now, let’s get to the title. “Choosing not to fight my illness, is not the same as giving up” So many people encourage me and spur me on, but the phrase “keep fighting” makes me feel like I might disappoint them if I don’t get well.
I love seeing stories about people who have overcome physical boundaries, and it is amazing to watch them fight down to the bone and claim victory over their limits. A man who lost an arm and a leg competed on Dancing With The Stars. A little girl born in Russia with no hands has tackled playing the piano like a professional. A woman who was in a car accident and paralyzed now uses a wheelchair but also does Cross Fit and can do pull-ups with her wheelchair still attached to her. Aren’t those stories just so inspiring and amazing?! They can say “I might not have hands, but that won’t stop me from playing music. Every little physical victory is a declaration that they will not be limited. Physically, I cannot fight my body to prove that I can do more and accomplish more. But here is the catch; mentally I am a fighter and strong to the core. These physical limits that I cannot push through, will not get the best of my spirits and my attitude.
My story doesn’t and won’t have that kind of inspiring ending. Fighting hard to accomplish goals that my physical body says I can’t do, is not possible.
There isn’t a battle to fight or a battle to be won.
There won’t be an “end” that goes one way or another. No winning, no losing. Just acceptance and taking this new path.
I now take a medication that keeps my daily debilitating abdominal pain at bay, but I still have pain every day that makes me need to sit or lay down and skip meals. This is a HUGE improvement, but still daunting and discouraging when I let myself think that I am in a losing battle. That’s not it at all. This isn’t a losing battle, but it isn’t one to be won either.
Everything I have going on with my body stems from my genetics. My body was MADE this way. My cells and systems simple just are not capable of functioning the way they are supposed to. So, I make adjustments.
Adjustments. That’s a hard reality as well. I am a food blogger. I LOVE to eat, and cook and spend hours in the kitchen and around the table with my family and friends. But I now have the need for a stool in the kitchen, recipes that are made with very little prep, and spending only small amounts of time on my feet. My fingers dislocate and lock up easily, so I can no longer do the amount of chopping and slicing and dicing that I used too. A recipe that requires me to stir at the stove for 15 minutes means I will hurt and need to ice my shoulders and elbows. Standing at the counter to mix and make lovely desserts puts me at risk for fainting, losing blood flow to vital organs, and weakness. Cooking at the stove makes my heat intolerance get the best of me. But it doesn’t help to try to keep fighting and push myself and push my body to it’s diminished physical limits. Yes, I enjoy the tasks, but it is not worth it to spend a day in bed miserable and sick and risk needing an ER visit to reduce my pain, increase blood flow, or get my heart rate under control.
But let me tell you what makes that even harder, there are no clear limits……pushing myself to the limit is not easily defined by a line to cross or not to cross. I never know day by day what my body will be capable of.
I must balance both physical limits and the need for mental health.
Choosing to not do a certain activity doesn’t make me “better”, but doing that certain activity can sure make my symptoms worse. So how do I set limits on my physical health while still doing activities and attending events that make me happy, inspired and energized? I LOVE going on walks and while avoiding my walks won’t cure me or make me feel better, not going on walks has a negative effect on my mental health and happiness. Quality of life and enjoying my favorite things is so important to keep myself out of the fog of frustration and depression and hopelessness.
Being with my sister while she was in labor and being in the room for the delivery is one such example. I was on my feet for over 24 hours and it took me 2 weeks to recover. I spent SO MANY days in bed after, but seeing my nephew born and being by my sister’s side was so so special and important. It was worth the physical repercussions. But, I have a family and I always need to take them into account when deciding on activities. I need to be able to learn and know what is worth it and what isn’t. Last week I had to say no to attending a basketball tournament and stay home resting instead. I know that if I went and wore myself out, I would not be able to care for my husband and kids the way I want and the way they need. See….there are always two sides to the coin. Will this “yes” mean a “no” later? By saying “no” now, will I be able to say “yes” to something else? By saying no, I am able to say yes to the things that matter to me….the things that I would not want to miss out on.
So you see, just because I am not fighting and pushing myself to the limit and chasing my old ways, does not mean that I have given up, I am simply making choices. And while I am not fighting my diagnosis, I am also not giving up on my health.
You can read more about how we landed on some tricky diagnosis and my journey with chronic illness here