My Body Is Failing Me

 

I can’t do the things I used to do. It’s definitely stressful (that’s an understatement) and it’s becoming easier and easier to become resentful of this fact. It’s a hard pill to swallow that at the prime age of 22, my body is failing me.

I used to be able to walk across campus of my High School that was bigger than some small colleges. Now, it’s hard to walk around the grocery store. I used to be able to walk to the kitchen without a problem, now when I do, I’m gasping for air. I used to be able to function 6 AM- 10 PM, now I’m lucky if I can make it 5 hours without laying down & taking a nap. I now have to take my wheelchair almost everywhere and ask my friends for help constantly, and I hate every part about it. I hate it so much, that I’m letting it control my life.

It’s easy to ask the question; why me? What did I do to deserve this? The answer is not a damn thing. But I do have to live with it. I have to fight every day; through the pain and fatigue, through the challenges and curveballs. The sick reality of having a progressive disease is that it won’t get better, no matter what I do or try- in fact it will only get worse & harder.

I’m fighting a losing battle. My body is going to betray me, the function of my body is going to weaken, and that’s just something I have to live with. Every. Single. Day. There will always be a little devil in the back of my head saying “today maybe your last day with function of your elbows. Maybe tomorrow you won’t be able to walk at all *evil laugh*”

With all the negative things going on with my body, it’s easy to be resentful. It’s easy to stay in bed and attempt to ignore the pain and on-going struggle.  I’d rather get lost in the world of reality tv than try to decipher if there’s a new flare-up, a side effect of the medicine/ disease, or if I died yesterday (Thanks Dr. Google).

Most days I want to cope by staying in bed and ignoring the world. But, I don’t get a choice. Just like you, I have things to accomplish, a to-do list a mile & ½long, 10 loads of laundry, and taking care of my fur babies. I don’t get to sit a wallow in self-pity. Every day I have to fight to accomplish the ever-growing list, but not do too much or I’ll end up in bed for a week. It’s a balance I’ll never be able to figure out. As much as I want to, I can’t accomplish the entire list and I have to take [long] breaks just to maintain a fairly- normal & tolerable pain-level kind of life.

I live to fight and I fight to win. But my body is betraying me. It’s a tougher battle every day, so some days the monster wins. Tomorrow’s a new fight, a fight I’ll hopefully win.

Different Life, Different Goals

If I had a normal body, I dream that I would be a runner. It would be my release. The burn would help me escape from my thoughts, but the routine would also help me sort them. I dream that I’d play softball on an adult Sunday team, with no stress, just the fun of hanging out with friends, burning a few extra calories, but also consume them in beer & junk food. But, that’s a life I only get to live in my dreams.

My goals are different than yours, as is my reality. Or let me rephrase my goals have to be different than yours. No matter how hard I strive, my body can’t do the things yours can.

It’s definitely something I [still] struggle with daily. I hate that I can’t push my body has far as you can. I hate that I have to work that much harder to accomplish simple everyday tasks. But I have to remind myself that it’s okay and I’m doing the best I possibly can.

Due to my chronic illness, I can’t workout or walk the recommended 10,000 steps a day or get in 30 workout minutes in a day. Heck, most days it’s a struggle to stand 12 hours a day. I have to remind myself that the goals that my smart watch recommends are for the able-bodied population; a population that doesn’t include me. I have to adjust those goals to fit something that I can accomplish daily; even if it is a third of the recommended goal- that’s okay, because that is pushing my body to its limits. My limits are different than yours & so is my body.

It’s okay because it’s the absolute best I can do. It’s better for me to adapt than to push myself too far. I have to remind myself that if I did somehow accomplish those goals every day, it wouldn’t be healthy for me and my body would rebel. And that rebel would send me in a downward spiral; a spiral I try my hardest to avoid.

I can’t run or play a contact sport or reach ‘normal people’ goals. It’s something that I work every day to adapt to. I haveto listen to my body. I haveto set goals that I can reach, and I have to crush them- because dammit it makes me feel good.

But, I have to remind myself that somedays (most days), chronic pain is going to win, and that’s okay too. Some days you win, others you lose, but as long as you’re doing the best you can, that is all that matters.

Not only am I adapting my goals, I’m adapting my mindset. I’m learning that it’s okay to have different goals. It’s okay, because it’s my personal best. I’m doing the best I can, and I have to accept that; and day by day, I’m learning to be okay with that.

Meet My Furry Friends!!

I’m probably the most un-lucky, lucky person in the world. Medically speaking, I get all the weird, rare shit that even make the doctors laugh at me. But outside of my bizarre medical history, I’m pretty dang lucky. I have an amazing support system; but mostly I have had the two most amazing service dogs (not that I’m bias).

I got my first Service Dog when I was 8 and he changed my life. King Ralph III was a male lab-golden cross and he was a gentle giant. IMG_1375.JPGHe moved even slower than a snail or at Ralph-pace, as we so lovingly named it. He loved everyone, but he was always partial to our little family. He always knew who needed him & when, always thinking of us before him, right down to his last breath. You see, Ralph thought me a lot, but most of all he taught me about unconditional love.

Ralph went to school with me from 5thgrade to my senior year, so it was only fitting that he would graduate with our class, right? That was the plan… Until the “C-word” forever rocked my world. The day after Christmas 2013, Ralph was diagnosed with Stage 3 Cancer, that spread to his entire body. We were completely devastated, but hopeful for a miracle that maybe he’d make it to May to graduate. Then, our vet dropped a bomb, “He has 3 weeks, tops. I’ve never seen anything this bad”. I was losing my entire world, and there was nothing I could do to stop it. My boy was a fighter though and stayed with me as long as he could (3 & ½ Months). None of us were ready to say goodbye, but we knew it was time & he was living a miserable life, just to make us happy.

I’m thankful for every day I got to spend with Ralph, and though the “I’ll see ya later” rocked my entire world, I wouldn’t change a thing. I love & miss him every day, & 4 and ½ years can’t change that. (Learn more about Ralph!)

For a while, I couldn’t bear the thought for getting another service dog, even though I needed their help. It took me 14 months to face the fact- I needed another assistance dog. I knew this dog could never replace Ralph, but that I’d love them just the same.

I got Patience V in May of 2015, and again, she changed my life. IMG_0055She is also a lab-golden cross, but has more lab in her, whereas Ralph was more golden.  Patience is again my perfect match. She likes to test my patience (ha, fitting) & give me all the sass. She is my partner in crime & is always right by my side. She has a heart of gold & is always my sassy-silly princess.

Although Patience is perfect for me, she decided that she too needed a medical problem to be just like her momma. About a year ago, she was diagnosed with epilepsy, and I’m pretty sure it’s her way of saying “Momma, you gotta keep your eye on me, while I keep mine on you. Also, I’m tired of you getting all of the medical attention.” My sweet PayPay always putting herself in front of the doctors so maybe they’ll stop messing with me. She does a darn good job at always making sure her momma is okay, and I’m forever grateful for that.

Canine Companions for Independence has changed my life & continues to do so every day. Not only have they provided me with two outstanding service dogs, I have gained an entire extended family of puppy raisers, friends, staff, & support. I don’t know where I’d be without the gift of my two four-legged children, but I do know I wouldn’t be near as successful. So, thank you from the bottom of my heart.

I am so grateful that this journey has been paved with pawprints, because I couldn’t do this life without them.

5 Times Having A Chronic Illness is Like Being an Old Person

The Medicine

Have you ever looked at your grandparent’s medicine cabinet & think “wow, I take all of these medicines?” Yup… Same. You also become a walking pharmacy & can tell any one person “don’t mix this medicine with XYZ” I also have a list of medicines that could make up a short novel, please don’t make me list, spell, or say them all.

The Parking

It’s true, I’m only in it for the parking.

Hiring Help

Yes, I’m twenty-something & yes I already need to hire a caregiver to drive me everywhere and do my hair and take care of me. Yes, It’s really annoying relying on others. All. The. Time. (PS, I know why old people get cranky at this)

The Pain

Don’t tell me I’m too young to know what joint pain/back/knee/neck & everything in-between pain—I can promise you I know. Lucky me, I just get to live with it for much longer than normal!

The Doctor’s Appointments

Have you ever had to write down your symptoms just so you don’t forget to tell your doctor? Or how about having a list of doctors to communicate with weekly just to keep them up to date on everything?

Trust me, living with a chronic illness isn’t for the faint of heart. And it really gives you insight on why old people are so cranky about things.