What NOT to say to young people with Chronic Pain

For those of you in the age range of 18 to 49 yrs, living with chronic pain or a chronic illness, you've probably heard some frustrating shit-ass remarks from people concerning your condition. Sometimes they'll say anything just to say something, give advice (useless or not) or they'll say a little story that has nothing to do with your condition. 

These idiots, well most that I have met, DO NOT:

A) Know what they're talking about.
B) Have a chronic pain condition.
C) Have a clue about what FAI is.
D) Have anything nice to say (some of them).
E) All of the Above.

Personally, I've heard some pretty awful rubbish talk from friends, family, co-workers, doctors, boyfriends and even from strangers. I've noticed that some people say things just to try and relate to my condition, even though they haven't a clue what I'm going through. Most don't do it on purpose or they don't think twice before saying something that might be ill-taken by the person with chronic pain. Others are what I call the "Know-it-all Fixers", they'll tell you to take vitamin X Y and Z because it helped someone they know or they'll say something like "you just need to sleep it off".

Here's are some of the things I find people shouldn't say to young people with chronic pain (from FAI or other conditions):

Incompatible Stories:

 1- I know a 80 year old who got a hip replacement and was on her feet walking the next couple days after. 
You're young and should have a speedy recovery.




 Sometimes, old folks just suck!  

My Reply: My surgeries are to actually SAVE my hips to skip having a hip replacement (arthroplasty) and in Canada, they put arthroplastic surgeries at a max 6 month wait for old folks whereas I have 8-9 months to wait, in pain, for a hip arthroscopy to take care of my FAI. I'll then be off my feet for weeks before I re-learn how to walk (depending on how fast I heal). It's not comparable.

2- My friend has cancer and chemo made her lose her hair, at least you don't have cancer and still have your hair.
My Reply: It took 4 years to get my diagnosis. If I had cancer, I would have croaked before the doctors found what it was, enough said.

3- You don't sleep well? I have a baby and I have to get up at night to feed him and I don't sleep much either. 
You just have to suck it up.

My Reply: My sleep is poor because the pain wakes me up, I'm exhausted, in pain and I rarely miss a day of work (I drag myself there sometimes). You made a choice to have a baby, I didn't have a choice to have or not have pain. I have 8-9 months to wait for a hospital visit where I'll leave with scars, tons of pain and weeks of immobility. I won't be leaving with a cute bundle of joy like most gals my age.

4- I broke my arm once and it was so painful, I know how you feel.
My Reply:  I'll bet my hat your pain went away completely after the normal "short term" healing period for your fracture and it didn't ruin your life in the long run. That's ACUTE pain. CHRONIC pain is a whole other ball-game especially when you have it for years. So NO you don't know how I feel.

                           

                             

  Useless Advice:




1- Have you tried ***name an alternative medicine***. 
My Reply: Well I tried Aromatherapy a.k.a "Smelling Myself Better". My house now smells like coconuts mixed with pine fresh and my pain is still there. Chiropractic adjustments and massages worked well for my back but did nothing for my hips. Surgery remains my best bet for eliminating FAI pain.

2- You should keep doing Kung Fu, it helps get the bad chi (pain/ailment) out of your body.
My Reply: I did 6 years of Kung Fu, the 3 last years I did 6-8 hours of intense training per week. The pain made me stop and I'm glad I did because it was ruining my hip joints more and more. I believe martial arts are great, but it's not a "Cure All" solution, in my case it even made my situation worse.

3- You should ask your doctor to do  X, Y and Z or refer you to ***name a medical specialist***
My Reply: I won't/shouldn't have to tell them how to do their jobs. I am currently on a waiting list to have my surgery done by the best FAI Orthopedic-Surgeon in my province. I'm sure I'll have the best care they can possibly give me in the public health care system. Going to private health care would give me the same surgeon, same surgery, same recovery time and drain my finances.





Downright Stupid:



1- You're so young, you can't be sick/in pain!
My Reply: What? I have to wait to be 50+ fucking years old to be considered sick or in pain???

2- Maybe it's all in your head.
My Reply: Right and I'll receive a letter from an owl that will take me to a magical place called Hogwarts.


3-  God challenges the ones he loves the most.
My Reply: With that line of thought, I wish God hated me as much as I hate him right now.

4- Things happen for a good reason...
My Reply: No they don't. I don't call having chronic pain that wreaks havoc on my life a good reason. Shit can happen to anyone and sometimes there is no reason or "greater good" for it.

5- Why do you walk like that? ( note: I walk with a limp)

My Reply: I'm practicing the zombie walk in case of a Zombie Apocalypse, gotta be prepared and I don't want to get my brains gobbled up!

I hope you've enjoyed this post as much as I have enjoyed writing it. Feel free to comment 

 or write down the inappropriate/wrong/silly things people have told you about your chronic pain/chronic illness. 

 
~Klau

Alone on V-Day...Never!

Codi and me!

Like most Valentine's Day, I spent this one single...yet not alone. It got me thinking on the good and bad ones I've had...

 When V-Day sucks...

The years where my pain was undiagnosed were the worst for all the failed relationships. I remember  one year, getting dumped just before V-Day and then feeling bitter about the whole holiday. I didn't want to see a single heart shaped object, hear couples brag about how their BF or GF was the most romantic person in the world on V-Day and I felt disgusted seeing PDAs (public displays of affection) wherever I went.

When it's just hurtful...

When I was growing up, we moved a lot and changed schools every couple years. I wound up being the new kid all the time and it got harder and harder to make friends. I rarely got valentines in those "crafty little v-day boxes" we had to make. One year, some kids sent me some pretty mean valentines that said "nobody likes you". I cried...a little...then I got even and told my teacher and they got punished and had to apologise to me.

When it's warm and fuzzy...

For 13 years, I had my regular little furry valentine named Codi (pictured licking his nose). This silly spirited Shetland Sheepdog was my best lil' bud and he was always around for V-Day. I would just ask him "Wanna be my Valentine?", he'd respond with a wagging tail and lots of kisses and then he got to pig out on his favourite cookies while I indulged on chocolates. Such simple moments like that one meant the world. Codi passed a few years ago, yet he forever remains close to my heart.

When it just simply rocks...

 I spent this year's V-Day with my pain flaring like crazy along with an insane work day where I had to deal with an annoying weirdo client who just wouldn't leave. We had a huge chocolate cake for a colleague's birthday that was delicious. A friend at work, who is also single, asked me if I made plans for V-day, I told her that I never really make any plans on V-Day, mostly cause I still secretly hate the holiday. Besides I'm usually too tired from my workday to make any big evening plans. 

I asked her what her plans were and she said: "It's simple, I'll hug my dog and my cat and tell them I love them. I'll also treat myself to a yummy dinner. You gotta remind yourself that you love who you are no matter what and treating yourself is important too." My Zen Genius friend had a good point there...you have to love who you are, no matter what else is going on in your life.

How did V-Day 2013 finish?

Picked up a new laptop table that I've been wanting for a while and I got some takeout chinese food from my favourite place (with the big awesome Panda logo). Had dinner with my best bro and skyped with my mom, who also had chinese food with dad at home. 

I can't say the pain wasn't there, it was... yet I chose to make the most of my day and best of all, I learned that it's important to love who you are no matter what.

Oh, and chinese food rocks like the fuzzy bamboo eating motherfucker on the logo!
 

­~Klau






   

Work+FAI: Staying in the game

Like I described in a previous post, I work a physically demanding job and I do a lot of traveling on most work days. I remember a time where I had no pain relief, no sleep, no energy, no diagnosis and no doctor to believe my pain. Along with all that, I had no doctor compassionate enough to give me a letter for my employer to give me light duty. Everything changed once I was diagnosed with FAI in 2012, well almost...

Working on the road is very hard on the body, especially when you have FAI. If you are sitting down for a good amount of time (like when I was traveling) or if you have to stand too long, your hips will hurt more. It's a crazy balancing act to alternate between the two and find a comfort zone. I really hated whenever I had a flight with turbulence that lasted more than 3 hours and I couldn't get out of  my seat! At the end of most work days, I was exhausted and in too much pain to do anything around the house or go out. On top of that, I had a boss and some colleagues that didn't understand or believe that I was in pain all the time, so no help there.

The first thing I got when I was diagnosed was a letter allowing me to switch to a lighter job and it  wasn't as easy as I thought. At first my boss gave me hell, mostly because he didn't believe a word I said about my condition and I overheard him saying to some colleagues that my doctor's letter was just to avoid the hard jobs and mandatory over-time our company got over the spring/summer season. I got my light work job...along with a shit-bomb of extra work to fill in my less occupied moments of the day...all thanks to my disbelieving ***insert insult*** boss. Plus all the enjoyable and non-stressful jobs went to the pregnant women in the office, just wonderful!

Eventually, my Boss began to understand that I was really in pain when I developed a limp while walking, after I had to take a few sick days because of the pain and when I lost patience and blew off a client. After a couple months, he got off my ass and gave me a break.

Here are a few things I figured out and my tips for keeping your sanity at work:

1- There are always haters and office gossips everywhere who will criticize you no matter what. Most of the ones at my office aren't close to being in my "friendly people" list anyways, so why should I care about their sick and twisted ways? If they talk shit, why should you give a shit about what they say?

2- Alternate between sitting, walking and standing as much as you can and try to get your workspace ergonomic as much as possible. Sometimes just having the right chair adjustment can make a big difference for the pain.

3- You shouldn't feel like you have to explain yourself to everybody. It's ok to just say "I have light work because of a health condition and I don't feel like discussing about it with you at the moment".

4- Work can be a distraction from the pain and it's a way to keep a sense of purpose and pride, especially if like me you love your career. 

5- Don't feel ashamed if you can't do all the work you did in your Pre-FAI life. If you need a light duty job, go get it. If you need to cut back on the amount of hours you work, cut them. It's ok to do a little less than before and to make adjustments. It's better than not working at all. Besides, we're human beings not machines.

6- If you switch to a desk job (like me), keep healthy snacks nearby to eat during the day. It steers you away from the junk in the vending machines and it's better to feed your body clean/vitamin rich food than tons of sugar and empty carbs. Some favorites on my desk are: bananas, apples, sliced orange peppers, unsalted almonds and tofu spread on pitas.

7- I used to drink too much coffee (up to 5 cups a day) and it affected my sleep and mood. Nowadays I drink 2 cups of coffee MAX in the morning and I keep a stash of green tea, earl grey and herbal teas in my locker to drink during the day. I also keep a small water bottle at my desk, I stay hydrated all day and the small sized bottle makes me get up and walk to the water cooler more often (see tip #2).

~Klau

Dating/Relationships when you've got FAI

I've read many other blogs about people living with FAI and some of the most common things they wrote about relationships are "it's not easy, Blah Blah Blah", "my husband and I, Blah Blah Blah", "he/she has been supportive since the beginning, Blah Blah Blah". Nobody out there living alone with FAI and putting up with the pain while trying to date/build a relationship with someone??? 

Then there's me and my Fucked up Romances (cause they do and can happen to people).

If I scroll back a few years, I was dating an older man with whom I had a friendship with for a few years and we decided to get out of the friend zone. Everything was going great until about 6 months into the relationship, the pain started and intimacy wasn't pain-free anymore. He left me a dear john message on Facebook and that was the end of it. I figured older guy = more mature guy, but I was wrong. Worse part of it, he was doing his residency at a prestigious downtown hospital (yes he was a MD and no they don't care about people with pain). 

A couple months later, I dated a colleague from the office. Same thing happened there, except this one got to say one of the most hurtful thing I've ever heard from a loved one:  "I understand, but what about my needs" translation "I don't really get it, can we have sexy time even if you'll hurt for 4 days after?". He is now known under the nickname "Douchebag" to my family and close friends.

I waited a couple years, then I started dating a guy I've know for years and he knew how I was before "shit hit the fan". I decided that this time, my pain wouldn't get the best of me and I would fight it and win. He was a very tolerant (too tolerant) man. We sometimes didn't see each other for 2-3 weeks at a time and all he would say was " I understand". Where things got sour, was when I asked him to stop talking about "getting married" and "having babies". Firstly, I don't want to get married and second it would be unrealistic and irresponsible for me to become pregnant before having my FAI surgeries. Good idea buddy, I already don't sleep much with my pain plus my energy level is rock bottom, let's just add a kid to the whole equation! I didn't have any energy to go out to do something or I had too much pain that all I wanted was a pair of PJs and a couch to pass-out on, NOT A KID!!! I broke it off and later found out that he was staying in the relationship just to satisfy the pressure he got from his family on getting married and having kids (it seems everybody is doing it these days).

I've learned a lot from my experiences:
 1- If your partner is only after sex : Dump his/her Ass
 2- Two-way communication is essential to making it work. If it breaks down, everything else falls.
 3- Stop comparing yourself to all the healthy "not in pain/normal" couples. Some couples give out a "everything is lolly pop perfect" image of their relationship, when if fact things are headed towards a breakup/separation/divorce.
 4- You have to learn to pace yourself and your partner needs to understand why you do this and he/she has to respect the limits you set for yourself.
 5- Don't settle for anybody who just happens to be looking for a mate, doesn't mean you have FAI that you have to lower your standards when choosing a partner. You'll most likely get very disappointed and hurt (see lesson #1).
 
With all the new surgical techniques out there, it's possible to manage/treat FAI better than before and eliminate the pain it causes. I believe that once the body heals, the emotions change and the mind heals as well. I will be patient and wait till I heal enough to make room for a partner in my life. 

May all the pieces in my life's puzzle fall in the right places (or most of the bigger pieces at least).

 ~ Klau

30 Things

I visited this site :
 http://invisibleillnessweek.com/submit-article/30-things-meme/
a few weeks ago and I stumbled on a little exercise about 30 things about my invisible illness. It was a fun exercise and it's a simple way to give loved ones an idea of what's going on and how it feels without having the "FAI Curse".

Here's how it went for me:

*Note*: Yes swearing sometimes comes easily to me, especially with the pain. If any soft souls reading this take offense from my words, you can suck it up and keep reading or just read other blogs. I don't care to censure myself here. 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: chronic hip pain from a cogenital malformation aka FAI (Femoroacetabular impingement)

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: 2009

4. The biggest adjustment I’ve had to make is: Abandon my very active life (kung fu instructor, sea-doo driving, playing music, physically demanding job)

5. Most people assume: I'm still able to do all the stuff I was able to do 4 years ago.

6. The hardest part about mornings are: Waking up tired with pain and going to work even when I know I haven't had a wink of restful sleep. It's worse when the next morning is a repeat of pain, no sleep and going to work.

7. My favorite medical TV show is: House (Like me, he has chronic pain and work is a distraction from it).

8. A gadget I couldn’t live without is: Laptop (Including WoW and a very fast internet connection).

9. The hardest part about nights are: Waiting for the pain to "tune out" and hoping that I get a few hours of sleep.

10. Each day I take _X_ pills & vitamins (it depends on the pain).

11. Regarding alternative treatments I: Hate people who believe they can "cure everything" if a person "believes". Then if you don't become pain-free, the "guru" will say it's not the alternative treatment's fault it's your own fault because you don't "believe".

12. If I had to choose between an invisible illness or visible I would choose: VISIBLE!!! People wouldn't accuse me of lying  or malingering and my doctors wouldn't have treated me like a junkie or drug seeker, they left me full of pain for years until they had proof of my chronic pain.

13. Regarding working and career: I work a shitty office job, cause all the nice light work jobs go to the fatty happy pregnant women. I can't wait to get back to my regular work outdoors, take courses to advance my career and escape the goddamned monkey house (aka the office).





14. People would be surprised to know: Before "shit hit the fan" I actually wanted to get married and have kids. Now my answers are No and HELL NO on those questions.
 

15. The hardest thing to accept about my new reality has been: The isolation. I've lost all my friends from my previous activities and I'm too tired to go out sometimes.

16. Something I never thought I could do with my illness that I did was: Help pack stuff and un-pack stuff from boxes when my parents moved in 2012.

17. The commercials about my illness: Are lost in an other universe...inexistant. Nobody (including the past me) really  knows what FAI is.

18. Something I really miss doing since I was diagnosed is: Martial arts and any kind of sport (even golf and running).

19. It was really hard to have to give up: Kung Fu and spending a day riding the waves on my Sea-Doo.

20. A new hobby I have taken up since my diagnosis is: Developped a taste for Artisan Beer. I enjoy scotch ales, barley wine and especially stouts...gotta love the stouts.

21. If I could have one day of feeling normal again I would: Spend a day on the lake or the St-Lawrence on my 215 HP water rocket.

22. My illness has taught me: People are full of BS and whine about the little trivial events of their lives when they haven't gone through anything tough at all. Men my age only want one thing and they definitely are incapable of dating a woman with a chronic illness. Doctors are careless assholes.

23. Want to know a secret? Things people say that get under my skin is: Before I was diagnosed, a few people (including doctors, family and "friends") told me "If nothing was found yet, it's probably all in your head". Worse are those who said it to my back at work. Another one I heard was :  "At least you don't have cancer". Yeah, well at least I don't have cancer but if I did, I would have died by now from waiting too long for the right diagnosis thanks to the scumbag doctors.

24. But I love it when people: Include me like a "normal" person.

25. My favorite motto, scripture, quote that gets me through tough times is: "People are stupid and I hate them"~ Rat, Pearls before Swine

26. When someone is diagnosed I’d like to tell them: There's not always a place for people like us, healthy people will never understand, even Hell has no place for us so make the most of it anyway. Enjoy the good days and take it easy on the bad ones, pacing is an art that takes patience and sacrifice to master.

27. Something that has surprised me about living with an illness is: How long I have endured the pain and not given up (over 4 years).

28. The nicest thing someone did for me when I wasn’t feeling well was: My brother cancelled a golf tournament to take care of me after a surgery. He's also stayed by me and helped me all these years even though most BF and friends have run away.

29. I’m involved with Invisible Illness Week because: Ermmmm, I'm not. Fuck this question.

30. The fact that you read this list makes me feel: Warm and Panda-ish (happy and fuzzy) inside.

   

­~ Klau

Why should I write one of these? Very good reasons...

My name is Klau, I've been living with chronic hip/groin pain since 2009. I've mostly been a very active person in my youth and did many sports including : Softball, Ringette, Swimming, Rock Climbing, Alpine Skiing, Running and I have been into Martial Arts since I was 9 years old (Green belt in Karate and Black sash in Kung Fu). In 2009 I was at the top of my game and was working towards becoming a certified Kung Fu instructor at my master's school. On top of that, I work a physically demanding job that hasn't helped for the pain at all. I hope that writing my experiences here, I can give faith and some much needed encouragement to other people coping with the pain of FAI.

 Pain, you sneaky sneaky pain...

Like many people I've read about who have lived with FAI, the pain started slowly and so discretely that it was hard to pin-point what was causing it. I gradually went from working out 6-8 hours a week at high intensity, to working out one hour on a given day and having to pay for it in pain for 4 days. 

My GP got everything started by sending me to an ob-gyn for the pelvic pain. After an ultrasound and CT scan, I was diagnosed with an ovarian cyst that wouldn't go away, so I had laparoscopic surgery to have it removed but the pain in the area never went away post-op. The same ob-gyn then told me I must have Endometriosis, since the pain didn't go away after surgery.

 I did 6 months of Depot Lupron treatments in 2010 (that cost me buckets of money and made me go through a "chemical version" of menopause at 25 years of age) that never put a dent in the pain. He then told me that "it might all be in your head", yet the shrink I consulted a month later said otherwise so I fired his ass (the ob-gyn) and went to see a new one.

The second ob-gyn said I needed to have another laparoscopy to check if I have adhesions from endo. She said she couldn't do the surgery, but that her colleague could. So she referred me to yet another ob-gyn.



Third one was no charm...none at all!

The third ob-gyn didn't want to do the surgery. She pulled up the report from my 1st surgery and it had no mention about endometriosis or any adhesions. At this point, she started defending the ass-clown ob-gyn from the 1st surgery and never wanted to consider there might be something else going on to cause the pain. She did the surgery and found an anomaly that indicated trouble with my urinary system.

After a 2 hour plus wait in the waiting room and less than 5 mins in her office, the urologist told me I wasn't her problem. This was the first time (and not the last) that I told off a doctor. Went back to ob-gyn #3 and she started telling me that it might just be stress and depression that was causing my pain. I argued with her and convinced her to refer me to a physiatrist (aka muscular-skeletal/rehabilitation experts). She prescribed me a low dose antidepressant for the pain and I got the referral.

Note:  I took the antidepressants for 5 months till my pharmacist told me I was having unusual side-effects (being drowsy till 10 am every morning) and I stopped taking them. They never did anything for the pain, but they helped me sleep...a lot! 
*Note: I did not give those pills to a cat. Firstly I'm allergic and have no cat. Second, who the fuck is sick enough to feed random pills to a cat?

I tried massages and chiropractic treatments in 2011, but it was completely useless for my hip pain (great for my back though).

The physiatrist was a doctor I met before (for another problem) and I like how he's open and honest with his patients. He's so far one of the few doctors who's never lied to me. He sent me to get a MRI of my waist area. Nothing found there, nadda. I was disappointed but I was used to hearing that tune. Sent me for a nuclear bone scan...nothing there either. Frustrated, he said there was no way that with over 33 years  of practise he couldn't crack this one. He sent me for the deluxe package of an MRI-Arthrogram of my right hip with a contrast injection. 



Bingo! He found it!!! June 2012

 For once in my life I could thank a doctor for doing something good for me and I had a name to call the thing that wrecked my body : Torn labrum with FAI. He also confirmed my suspicion about ob-gyn #3, he showed me a note she sent, saying to be careful with me...cause she thought I was a junkie/drug seeker!

He referred me to the best FAI orthopedic surgeon in the area. 

Somewhere in  August 2012, my GP finally gave me medication that works for my pain and I went from my usual physically demanding job to a light duty desk job.  After more than 4 years, I'm finally on the right path to escaping the FAI pain trap that got hold of me all these years. I'm glad I didn't give up and stood up to the nay-saying doctors. As I look on those years, some of the lyrics from the "Truth about Love" song from P!nk popped in my head :   

The truth about love comes at 3am
You wake up fucked up and you grab a pen
And you say to yourself
I'm gonna figure it out, I'm gonna crack that code
Gonna break it break it down
I'm tired of all these questions
And, now it's just annoying
Cause, no one has the answer
So I guess it's up to me
To find the truth about love

Just change the word "Love" for "Pain" in the lyrics and that's  just about how I felt before finding out I have FAI.


*note: picture is from the video of P!nk's "So What" song from the Funhouse album. Fucking awesome gal that P!nk!!

­~ Klau