Suggestion - Where's the FUN?

[jenshead]

I love that this forum exists - it's a great source of information and support.  But I have one gripe, and it comes with the territory of a forum for sick people.  That is, it's depressing.  That's expected...I imagine all the people who have had a full recovery have gone on with their lives and don't spend all their time online, but can we give ourselves some hope?  For a lot of us, this disease will never go away.  It's chronic and painful.  It's my opinion that the best way to combat pain is not with medication, but with keeping busy and keeping happy.

There's a list on the health pages of activities to avoid (very informative, I must say).  Can we make a list of activities we CAN do?  What hobbies do we all have?  And I don't mean "I can still go out and smell the roses."  I mean...is there anyone on here who goes rock climbing??  Maybe that's a stretch, but you get my point!  Also, if you have found a way to do an "avoid" activity with some sort of modification, tell us about it.

ajunebug had an excellent example in one of the recent discussions.  "I can't swim laps anymore without a swimmer's snorkel because I cannot repeatedly turn my head to breathe. But the snorkel makes it possible to swim laps pain and strain-free!"  Here I was thinking the rest of you could handle swimming and I was one of the unlucky ones - turns out, I just hadn't gotten as creative as ajunebug!

[selmaS]

  Hi and welcome to the Chiari forum.

As u noted this is an older thread and the person u replied to may not respond.....

When u read how people are doing post op, u need to also know what else is going on,...other conditions b4 u write off Chiari and the surgery as a means to  slow u down...not everyone post op has issues and it tends to be those that have these other conditions and issues that are slower to heal....and many if us have been symptomatic for most of our lives so recovery will take longer and for some things may not get better.

The first thing u need to do is make sure u do not have related conditions, or a CSF obstruction....those that have congenital Chiari have grown up with the symptoms and many times do not realize how they feel is a symptom as it feels "normal"

It is great u r so active but take notice to when u feel ur nervy things and see if it is after a certain activity .....what the trigger is. We do have a list of activities to avoid when u have Chiari.....it is possible to one day just get hit with symptoms if u r not careful and even then...if u are....it is a strange condition to have.

As far as massage goes I was told not deep tissue in and around the neck...as it could affect the herniation.

The sensations u have could be Chiari, or a related condition or u may have low levels of vitamins and or minerals....u need a full check up.

AS for the last  or u r #1 question (as I did them backward)....many with Chiari have vision issues....not saying ur issue is deff Chiari related...but it is possible Chiari plays a role .....get to a neuro optho for a full eval.

[monmom]

I happened upon this thread today, and even though it's a couple of years old, I think it's time to chime in with folks who also have Chiari.  I found out a couple of years ago, through an MRI after a shoulder injury due to rock climbing.  So, funny that someone mentioned climbing... more on that later.  I have a Chiari I and I'm officially asymptomatic.  However, I'm finding more and more 'little' things - nervy-feeling things, and just hoping that it all stays mild.  I have always been very active - sports all growing-up, then running, mountain biking, extensive backpacking, climbing, mountaineering, yoga, road biking, tennis..... just playing in every way.  I'm scared when I read about folks who can't swim laps b/c they can't turn their heads, then thankful that I'm as healthy and active as I am, then wondering if my mild nervy stuff is possibly getting worse and/or actually related to the Chiari.  My neurosurgeon said he wouldn't touch me with a 10 foot pole, surgery wise.  He did say that if I run, he wants me to wear good, cushiony shoes, and not do anything really jarring.  I mentioned climbing, and he didn't have any problem w/ that.  It's not jarring, and if I had a big fall, I'd have bigger problems than just the Chiari. :-)  But I didn't go into the fact that I do a lot of bouldering (always w/ a crash pad), which is a lot of popping off and hopping/sometimes falling onto the pad.  I want to keep doing what I'm doing but I also don't want to make things worse, when I'm a perfectly healthy person as it is.  I'd just as soon give it all up if it meant many more happy, active years w/ my kids and husband.  I love swimming but I'm not very efficient and don't really use it for exercise, but may start.  I love yoga, and am very careful.  My main questions right now are these: 1) Does anyone know anything about iritis being related to Chiari? 2) Could sciatica-feeling nervy stuff, and shoulder/neck/head nervy impulse type sensations be related? Or am I just blaming the Chiari for everything? Also (this would be #3 :-) - how beneficial do you all find massage?  I love it and plan to continue - b/c I've always been a massage-loving girl, but I may make it part of my regular plan to manage this mild nervy stuff..... Thanks!!

[jenshead]

Thanks all - This is great!  Hopefully we'll get a few more

[ajunebug]

Hey, OP! Thanks for noticing me! I feel so invisible here, lol!

Yes, swimming is a big passion of mine and I'm so glad I've figured out a way to keep doing it. I was seriously heartbroken when the pain got too bad and I had to stop. But with the snorkel I can swim for an hour straight, no problem. My pain is ALWAYS lessened after I swim. In fact, when I am getting really stiff and sore I always tell my husband that I need to go get in a pool, stat! My body seems to love it.

Like another poster, I also adore hiking and do it regularly. I have a girlfriend I meet and hike with. We have a glass or two of wine first and hike and chat for hours. :)

I just went on a vacation to Latin America with my husband, too. I was unsure of what limitations I would have, but I just took it a day at a time. I ended up swimming in the ocean, riding a horse (only slow walking, no trotting/running), hiking in the jungle, all kinds of fun stuff.

I hate dealing with pain and nerve issues daily, but I refuse to stop living my life because of chiari. That's what pain medication is for, lol. I keep active and busy. I volunteer at my kids' school, go out with my friends and family, get drunk with my girls from time to time, etc. I always carry my meds with me, and I am not hesitant to take them. Chiari may slow me down some days, but I'm still me and I'm not gonna stop doing the things I love. My husband and kids and I plan to do a three month long hike in two years, along the Pacific Rim. I won't be able to carry a pack, but I will still go, health-permitting. I think of all those people who have waaaay more serious things than Chiari - things like terminal cancer, ALS, MS, cystic fibrosis - and a lot of them are still out doing the active things they love. I say keep doing it and make whatever adjustments you have to in order to enjoy it in a safe and low-pain way. Life is SHORT!

[Marybz]

I love to hike in the beautiful woods with my good friend.  No backpack, so we stay under 10 miles.    I eat great food that is also good for me., and sometimes i eat great food thats not good for me.  I do low impact aerobics, no bouncing.  Lift lighter weights just not over my head.  This Chiari diagnosis really *****, but with modifications, i'm enjoying the activities that make me hopeful and energize my soul.  I too am thankful for everyone who shares the good and the bad with me.  Makes me feel like I'm not alone.  

[DarthMom]

I have 3 young kids... and we love theme parks but I can't walk long distances like I used to So I rent the scooters that are mooterized I am in my 20's barely and have a stroller with babies but oh the lines we cut and the glares we get but I don't care because I have an amazing time with my babies and if dumb turists don't get out of my way I imagine how much fun running them over at 5m an hr would be LOL!!! Anyway to spend a day with my family with a smile on my face right!!!

[selmaS]

  We r open to add nething that the members feel they want or need...unfortunately, the membership changes approx every 6 months to a yr....so u have to start all over....

  But getting a thread of what we can do is a great idea.....I am interested to see what comes of this and all the diff suggestions and activities the members r involved in.

I myself like to get in a swimming pool, so with the warmer weather moving in...I am getting ready....and when I can not swim...I like all sorts of arts and crafts...I have pics in my profile page photo albums.

   "selma"

[itsy1]

Kids with parents who have CM complications can have some interesting perspectives.  Mine do:
Thanks to my tinnitus, instead of being told to be quiet like most active 7yr old boys my son is told "Speak louder, Mommy's ears are wonky today".
One day when asked why she had not done her homework my then 8 year old said "My forgettery is acting up".
How many toddlers have gotten to have crawling races down the hall to take baths?  Mine have, it was a lot easier than bending over to put them in the bath tub ;)

[jenshead]

Here's mine.  When there isn't snow on the ground, I try to go biking regularly.  There's a nice 5 mile paved trail surrounded by woods near here.  So I get 10 miles of biking in.  I used to go on dirt trails in the woods but even before I started having problems my clumsy self would fall all the time.  So now I stick to the paved ones!