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The Comeback: Top 10 Things I Learned While Being at My Worst


By Courtney | @Miss_Cystinosis | Sept 21, 2018


I became an entirely different person after surviving the worst state I’ve ever been in, both mentally and physically. What do I consider my worst? My worst was almost two years ago in 2016; I was in the most pain I’ve EVER been in. Stairs weren’t an option for me, climbing into vehicles was overly difficult (I had to be lifted into trucks), I struggled with walking more than a block, I could barely lift anything, I couldn’t even shower without help and coughing, sneezing & getting the hiccups brought me to tears. Fractured bones were the main cause of that pain; I had over 10 fractured bones at the time. My feet were fractured (and still are) due to wearing heels, I guess I was meant to be short.. I had about 5 fractured ribs caused by laying on my stomach, I broke my arm by pushing my cat off the counter, and I don’t even know how I managed to fracture my knee. The bone issues couldn’t have come at a worse time either, right when Alberta’s winter started becoming brutally cold. Cold + bone issues do not mix well; the crisp winter air causes the body to stiffen up ESPECIALLY when you have any form of bone problems. With all my fractured bones I could barely ever leave the house. Clearly being in constant pain and never leaving the house takes a major toll on your mental health as well. There were days where I thought I wouldn’t make it, but my family came to the rescue!


All my bone issues were thought to mainly be caused by metabolic acidosis, which occurs when your bicarbonate (c02) levels become extremely low, creating high ph levels and in turn, metabolic acidosis. The co2 levels in my body had been low for so long that the acid started leaking into my bones. HENCE the bone issues. My bones broke easily and healed at an extremely low pace. I wore a cast on my arm for almost 6 months and once it was finally taken off, the bone still wasn’t 100% healed.  This situation is very rare and normally can be reversible but for some reason my body wanted to keep the acid. The only thing that has helped with controlling the acidity is purposely lowering my kidney function. By lowering my kidney function, less bicarbonate is leaked out and my ph levels are lowered. Sadly, the consequence of having stronger bones is a kidney transplant. I would’ve needed a kidney transplant eventually anyway though.


If you just started following my journey, all this may be quite confusing; so check out the link below for some clarification.

Cystinosis for Dummies


I truly believe the comeback is always greater than the setback; although the setback was greater than I would’ve liked, I still became a better me in the end :). Here are the top 10 things I learned from my major setback, while being at my worst:


1. Asking for help and/or accepting help does not make you weak

I was a fairly independent person prior to becoming extremely fragile and weak. I lived in my own apartment, paid my bills, got myself through college, and even had a stable career, all by the age of 23. I was extremely stubborn when it came to accepting and asking for help. I was lying to myself when I said I didn’t need help. By asking for help, it felt like I had finally been defeated by my chronic illness. Eventually I came to realization that by not asking for help, I was hurting myself and hurting those around me as they watched me suffer. The truth is, becoming vulnerable and accepting/asking for help takes guts, which does not make you weak for doing so but instead, a stronger and a better human being.


2. How to listen to your body

If you have pain, get it checked out. Simple as that. At first I never went to the doctor on time, which comes with consequences. I had a fractured arm for a month before actually getting a cast on it because I didn’t think it was broken. Obviously I was wrong… that caused the healing to be more lengthily. If you have even the slightest concern and if you feel as though your body is not it’s “normal” go get it checked out. It’s so easy, yet some (including me) tend to push these things aside but it could literally save your life if you acknowledge what ever it is that’s going on in your body.


3. Slow and Steady actually does win the race

Don’t push yourself too hard. I pushed myself too hard constantly. By the end of college I was so burnt out that I was hospitalized partly from becoming suicidal. When I made my to do lists, I always felt like I had to get everything done before the day ends. I tried putting my life in fast forward when I learned what the life expectancy of people with cystinosis is; that’s partly what lead to my health becoming as bad as it was two years ago. Take your time, take care of yourself. Plus, there’s so much more you will learn to appreciate in life when you’re careful and take your time.


4. How to advocate and stick up for yourself

This is HUGE. Find a doctor that will listen to you, stick by you & never lose hope even when others say “there’s nothing more I can do”. There is nothing worse than hearing those words or “there’s nothing I can do for you, so do want book your follow up for three months from now..?” – most doctors when you have a rare disease. NO, I definitely do not want to book a follow up.  Find a doctor who is willing to go the extra lengths for you. I did and it has helped my bone health DRASTICALLY. Preach for yourself.


5. It’s ok to put yourself first

It’s not selfish to put yourself first, especially when it effects your mental and physical well being. Enough said.


6. How to tell who your real friends are

Your real friends are the friends that stick by you through your worst. I was in an extremely dark place, making many of the conversations with friends negative. I didn’t have enough positive aspects in my life to talk about at the time. When a friend bails on you because you’re “too negative & rely on their advice too much” during a time when you can barely think for yourself, they never were your friend. If a friend or a partner find it awkward to talk about your struggles and/or illness, they’re not your friend. If a boy pushes my illness aside or makes it awkward (especially when that’s the only thing he’s awkward about) I don’t have time for that and neither should you!


7. Stop overthinking everything and caring so much about what others think

Easier said then done, I know. Something that helps me is I ask myself “will it benefit my quality of life?” if the answer is yes, screw what other people think. Put YOU first. Overthinking can be extremely difficult to control; asking myself “am I being rational?” helps me if I am overthinking a scenario.


8. Too much patience and being too nice IS a bad thing

People will take advantage of you if you’re too patient and too nice. I know this from experience. Don’t be a pushover, it leads to terrible consequences.  Just make sure you know how to stand your own ground. Will it be scary at first? HELL YES, but eventually you’ll feel better about yourself by doing so. AND you’ll find out who your real friends, who’s not just using you.


9. I am not a burden I HAVE a burden (still working on this)

This is extremely important. I have to tell myself this everyday. But I always remember I did not ask for this life, I was given it because am I one of the few strong enough to endure it.


10. Never take life too seriously

Because why would you?! I laugh way too much, but I don’t care. Laughing is my coping mechanism for severe depressive disorder. It helps to convince my brain I am a happy person and not severely depressed, it works sometimes. I laugh at things that aren’t even funny because sometimes I don’t know what else to say or do, so I panic and start laughing.. I could be doing much worse things to cope; laughing is definitely one of the healthiest coping mechanisms.


I could go on and on about the things I’ve learned about others and more importantly about myself but that’d take a while, so I’ll leave you with the top ten. If you read this, thank you!!

Don’t forget to subscribe for future bluntly truthful blog posts. Every SINGLE read and subscriber helps me to raise awareness for this rare disease I possess (and 2000 other people worldwide) called Cystinosis.


Love & Spoons,


Courtney is the brains behind misscystinosis.com. She is 24 years old (almost 25) living with various chronic illnesses caused by her main diagnosis, Cystinosis. She is getting a kidney transplant in the near (ish) future in order to help with the millions of bone issues she’s been having.


By Courtney

Instagram: @miss_cystinosis

Website: www.misscystinosis.com


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