30 Things About My Invisibile Illness You May Not Know

This week is Invisible Illness Awareness Week.
If you keep up with this blog, you have likely seen my previous two posts on this topic.
If not, they can be found here and here.

One of the ways the website associated with this online event raises awareness for invisible illnesses if by asking individuals to fill out the "30 Things About My Invisible Illness You May Not Know" meme. I have done this twice since I started this blog - first in 2011 (several months after finally being diagnosed after 5 years of being fobbed off my doctors) and then again this past April not long after my relapse was confirmed. In order to raise awareness this week, I am blogging about it again.

After completing the meme three times now, I find it interesting to see how my answers have changed (or stayed the same) since my initial diagnosis. Bone pain, for example, remains the hardest part of the night for me; my favorite gadget is still my mp3 player, and I still love it when someone makes me a cup of tea and brings me a magazine. Meanwhile, the hardest part of waking up in the morning used to be the moment I remember that I have a chronic bone infection, but now it is waking up exhausted and realizing I still look horrible.

As mentioned in a previous post, invisible illness has a tremendous impact on a person's life. Sometimes, the kindness of other people can make a big difference for someone who has a plate full of worries. From bringing over a meal for dinner, sending a card with well wishes, or simply stopping by for a cup of tea and an afternoon chat, friendship and support are what keep people going. Knowing that other people care makes all the difference for a person going through a rough patch. Whether you yourself are living with an invisible illness or know somebody who has one, the site InvisibleIllnessWeek offers support and lots of great advice. I encourage everyone to check it out. And remember, a little bit of kindness and a touch of empathy can make all the difference in a person's life.

Here are my answers for this year's invisible illness awareness week:

30 Things About My Invisibile Illness You May Not Know

1. The illness I live with is: Chronic Osteomyelitis

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: 2006

4. The biggest adjustment I’ve had to make is: not being able to continue with school; moving back home/not being able to live independently. Living at home is going really well, but I miss doing my own grocery shopping, vacuuming, doing laundry, etc. Basically, being an adult who is completely reliant on other people for everything takes some time to adjust to.

5. Most people assume: Bones can’t get infected or that bone infections can be easily cured like other infections (e.g., bladder infection) with a simple seven to fourteen day course of antibiotics.

6. The hardest part about mornings is: Waking up and realizing I am still exhausted, and then forcing myself out of bed anyways. Or just giving up and going back to sleep even though I know I am wasting the day away. Looking in the mirror when I do wake up and thinking “I still look like I am rough shape”.

7. My favorite medical TV show is: ER

8. A gadget I couldn’t live without is: My mp3 player. When I am too tired to do anything else, I can still lie in bed and listen to music or the radio. I find music is really helpful as a distraction from pain, and listening to the radio is a good way to stay connected to the outside world. Music also helps deal with strong emotions and bad medical news – it definitely has a cathartic effect. Another great benefit of music is background noise. The IV vancomycin I was on for two months has affected my ears. One of vancomycin’s known side effects is ototoxicity, aka causes damage to the ears. Despite being off this medication for almost a month, I still have tinnitus (ringing in my ears). I miss going to bed in complete silence. I hear the ringing less when there is background music. My surgeon says I am young so should bounce back from this side effect. Fingers crossed!

9. The hardest part about nights are: bone pain; wanting to sleep when I am physically exhausted but unable to do so because my mind is still wide awake; the inevitable thoughts about the future that sneak up on you when you are alone in the dark.

10. Each day I take 4 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: I started doing yoga in the summer but stopped when I became really sick in July and was put on IV antibiotics. I can’t do yoga at the moment because I am missing 2.5 inches of my tibia (shin bone). I find colouring is very calming when I am stressed out.

12. If I had to choose between an invisible illness or visible I would choose: visible.

13. Regarding working and career: I am on leave from college while I deal with the bone infection. Although I could do a lot of the course work, the school will not let me continue the program unless I am able to complete the clinical component at the same time as everything else, which I am unable to do because of the missing tibia thing… I am hopeful that I will be able to return to school for my final two semesters next spring or fall.

14. People would be surprised to know: That I can actually walk (albeit with crutches) on my right leg despite missing a chunk of my tibia because a cement spacer is holding things together.

15. The hardest thing to accept about my new reality has been: how quickly the people I thought were my friends stopped actually being my friends. The loneliness can only be described as cruel. Most of my “friends” haven’t texted me in at least two weeks, if they texted me after surgery at all. Nobody called; no one offers to visit or hang out. Hell, most people don’t even respond when I text them and ask how they are doing.

16. Something I never thought I could do with my illness that I did was: continue going to school and graduate from university (2014) after I was first diagnosed in 2011 and then continuing with a nursing program in college for eight months despite my relapse in January 2015.

17. The commercials about my illness: There are none.

18. Something I really miss doing since I was diagnosed is: Walking, especially in the evening/at night. I love nature, especially when it is dark and nobody else is outside. It is amazing how alive the world is when it gets dark.

19. It was really hard to have to give up: taking long walks in the evenings and exploring campus/a new city; being able to make a cup of tea and carry it (or pretty much anything else) to my room after the latest surgery in August (can’t carry anything while using crutches).

20. A new hobby I have taken up since my diagnosis is: cross stitching – the project I am working on now is massive.

21. If I could have one day of feeling normal again I would: shave my leg! I haven’t been able to shave it in five weeks…. I look like a freaking hobbit! Then I would make my own cup of tea, pour it into a thermos, and carry it with me while talking a walk (without crutches) =)

22. My illness has taught me: Happiness can be a choice and being sick doesn’t exclude you from being happy. It is ok to not be ok. Sometimes we just have bad days and emotions like anger or sadness or even a little bit of despair; these feelings are valid and should be expressed because shoving them under the proverbial rug will only cause problems later on. Let’s be honest – being chronically ill, feeling horrible, being exhausted and in pain, doctor’s appointments, scan results, stress and worries about the future, etc. get you down after a while. You don’t have to be strong all of the time.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, you’re still sick?” No… I had 2.5 inches of my tibia cut out just for fun!That doesn't grow back overnight. We won't start reconstruction for another 2 months, and then it will take almost three more months to grow that bone back. Or comments like “You look so well” or “But you don’t look sick”. Yeah, because chronic osteomyelitis is an invisible illness. You can’t see if a person has cancer either; that doesn’t mean they don’t have it. After my latest surgery, I had a lot of issues with pain management. The recovery room messed up really bad and gave me way too much morphine in a very short window of time so my breathing kind of tanked. My mum posted about this on her facebook page. About two weeks after surgery, I answered the phone at home. It was someone my mum new from work or something. She told my mum that I sounded really good on the phone so she must have over exaggerated about how poorly I was in the hospital. This got me pretty angry. And the comment “Well, I sprained my ankle once…” Really? Didn’t I just tell you that I am missing 2.5 inches of my tibia? I just had my fourth surgery with at least two more to come. Over the last 9 ½ years, I have spent about 14 months on crutches. I don’t care about our sprained ankle and the week you spent on crutches. Oh, and most of all, the comment “it could always be worse.” What does this even mean? Worse than what? And even if someone else has it worse, does that mean that I should be happy with my situation or thankful it’s only an infection that I have been fighting for the last ten years?

24. But I love it when people: Ask me how I am doing and genuinely seem to care when I tell them instead of losing interest when I don’t respond with the standard “I’m doing good”.

25. My favorite motto, scripture, quote that gets me through tough times is: "Worry does not empty tomorrow of its sorrow. It empties today of its strength." - Corrie Ten Boom

26. When someone is diagnosed I’d like to tell them: 1) Chronic osteomyelitis places you on a long and tedious road – antibiotic therapy is lengthy and can cause extreme fatigue, surgery is painful, reconstruction is time consuming, and there are no guaranties the infection is really gone. There is no “cure” in the world of chronic bone infections, only “remission” and “no evidence of disease”. While you make your way through treatment, don’t forget the psychological aspect of the infection. You are probably in this for the long haul so you need to be kind to yourself and deal with your feelings. 2) When your doctors/surgeons tell you that they want to go with the most minimally invasive surgery or shortest course of treatment, ask them what other options are available. With things like bone infections, the only difference between getting better (and staying that way) and relapse can be an extra millimeter or two of bone being scraped away. 3) Don’t be afraid to ask for more scans before you make decisions regarding treatment. The x rays, bone scan, CBC scan, MRI, and CT scan I had since last December all showed something different. An x ray may not show how extensive an infection actually is, so having different scans done can mean the difference between simply getting oral antibiotics that beat the infection down for a while before it comes back and surgery that may actually eliminate the infection.

27. Something that has surprised me about living with an illness is: How much the illness has become part of me and now seems normal. It is hard to remember life before being ill.

28. The nicest thing someone did for me when I wasn’t feeling well was: Make me a cup of tea and get me a magazine.

29. I’m involved with Invisible Illness Week because: You never know what people are going through unless you ask them. Everyone deserves kindness and empathy. I wish more people were aware of that.

30. The fact that you read this list makes me feel: happy because by reading this you probably learned about how living with an invisible illness can affect a person’s life and will hopefully explore the invisible illness website; but also sad because the only reason that I am writing this is because I have an invisible illness myself.