Chiari Online Support Group

Lifestyle Changes

I was just diagnosed with my Chiari this past Tuesday. I have read online all sorts of tips about lifestyles changes I should make...it's overwhelming.

My question is, what are the lifestyle changes that you have made that have made the most difference??

I'm in graduate school so I do a lot of reading, sitting in classes, and carry around a LOT of books....so trying to figure out how to prevent furthering my symptoms.

Thanks, in advance, for all your advice!

Katrina

Hi Katrina,

I'm in grad school too, and was trying to work full time... so i certainly understand where you are coming from. Honestly, the thing that has helped me most so far is allowing myself to do less. I take naps and work less and don't try to do absolutely all of the assigned reading or put the normal 110% into everything.I'm definitely an overachiever who is having to become okay with being an achiever, and you know what? So far, I only feel better physically and emotionally, so much less stress!

If your professors seem to be understanding, try asking what is most important to be read and explaining that you will get done as much as possible, but sometimes its not possible to do it all and so its good to know what to give the most weight to. My experience is they don't expect you to do everything anyways X-) Also, to help with the reading, I tend to read in really small increments of like 15 minutes at a time in a position that is most comfortable and then rest for a few minutes. It takes forever, but it also actually helps me remember more and cuts down on study time later.

I don't typically carry any of my books to class with me, but obviously with some classes you don't have a choice. You could consider sharing with somebody, going the e-reader route, or getting a cheap used/library copy to keep at school somewhere.

I hope some of that helps some...I'm currently in the process of talking to all my profs about what is going on and a few of my classmates know as well (mainly so they can drive me home if i am having an "attack") and they've all been really great so far. Of course, i'm going to school for therapy so they should be! Lol

Katie,

THANKS SO MUCH FOR YOUR HELP!!!!! I couldn't even imagine what working full time and going to grad school must have been like with Chiari. I am on an appointment so I work for the university 20 hours a week or so, and I'm so drained by Friday from that!

I have been taking naps, but I will talk to the professors to see what they can do to help me with the readings. GREAT IDEA!

My boyfriend just bought a Nook for me, so I've been trying to get them as e-books, but so many of the ones I've had so far are not available that way. I'm hoping it will be better next quarter.

Katie, you just made my day! It makes me feel so much better to know someone else is out there doing something similar to me with this disease. At first when I was diagnosed I thought about dropping out, but decided that would be foolish I could get through it.

I'm going to follow your advice! THANKS SO MUCH!!

Let me say to both of you WAY TO GO!!!

To accomplish what you have already and to keep pushing on is testament to your strength. Before I was diagnosed I worked a full time job, Pastored a local church; was a faculty member of a distance-based Seminary and completed my Doctoral degree. As my SX's increased I had to let things go even though I didn't at the time know what was wrong with me.

What I am saying is keep doing the best you you can, prioritize the most important things. Be able to say "NO" to those things that need to be told "NO" Your stronger than you think! You may have this condition - don't let this condition have you!!

Wow Kenny, that's a lot for someone who is totally healthy!

Honestly, I think I am kind of lucky. I recently got married and my husband and I moved to CA from GA for the sole purpose of jointly attending Grad School (it was the one place where we both got in). I hate being this far away from my family and would feel like the move was a total waste if I gave up and I can't go to school without going to work, plus I feel like once i can get into therapy I'll really have more flexibility to set my own hours and take breaks as need be, so I've had quite a bit of motivation to keep at it. On the other hand, sometimes it legitimately is too much, so I"m trying to figure out what I can do to keep that "functioning" middle ground, just like Kristina.


Unfortunately, part of that for me right now is saying no to almost all social activities because i am just to tired or physically can't after dealing with all the have to's...I feel so bad for my poor hubby! Especially because he already struggles with anxiety and depression issues, and he's been so awesome and supportive so far.


Kenny Who-dat Flaming said:

Let me say to both of you WAY TO GO!!!

To accomplish what you have already and to keep pushing on is testament to your strength. Before I was diagnosed I worked a full time job, Pastored a local church; was a faculty member of a distance-based Seminary and completed my Doctoral degree. As my SX's increased I had to let things go even though I didn't at the time know what was wrong with me.

What I am saying is keep doing the best you you can, prioritize the most important things. Be able to say "NO" to those things that need to be told "NO" Your stronger than you think! You may have this condition - don't let this condition have you!!

Kenny:

THANK YOU!

Sounds like you are similar to Katie and I! That is a lot for someone with Chiari!

You're right - you do have to choose to say no. I'm glad that my boyfriend understands. A lot of times we hang out doing homework because I don't have the energy to go anywhere. It's tricky for us, he doesn't drive because of a rare eye disorder and so if I"m not feeling well we just don't go anywhere. he's totally understanding, and for that I feel very blessed.

Kenny Who-dat Flaming said:

Let me say to both of you WAY TO GO!!!

To accomplish what you have already and to keep pushing on is testament to your strength. Before I was diagnosed I worked a full time job, Pastored a local church; was a faculty member of a distance-based Seminary and completed my Doctoral degree. As my SX's increased I had to let things go even though I didn't at the time know what was wrong with me.

What I am saying is keep doing the best you you can, prioritize the most important things. Be able to say "NO" to those things that need to be told "NO" Your stronger than you think! You may have this condition - don't let this condition have you!!

I would think that you definitely want to find a different way to carry your books. Maybe a wheeled book bag that would prevent you from lifting anything too heavy. I was told not to lift anything heavier than a gallon of milk as it could cause too much strain. The biggest lifestyle change I made was allowing myself to get plenty of sleep. I am always somewhat fatigued and I know that I need a lot of rest. Walking or exercising mildly can make us feel better too. Eating right is always good and not taking risks such as riding rollercoasters, motorcycles, etc.!

Carla,

Yeah I invested in a rolling backpack. You wouldn't believe the looks I get, but it does wonders for my pain!

The doctor told me the same thing. I'm not to lift anything more than 10 pounds. I live by myself so that's been quite a complication. I actually was refused help loading my groceries into my car at the store last night, so it took me forever to get my shopping done. I can't really make my bed myself, and my apartment is a wreck. Thank goodness my boyfriend said he would help me this weekend - I really need it!

I struggle with getting enough sleep too. I simply can't lay still that long!

I've been trying to walk a lot and do exercise, it's hard to motivate myself.

Good thing I've never been much of a thrill seeker, right?

THANKS SO MUCH FOR YOUR ADVICE!


Carla Jo Stone said:

I would think that you definitely want to find a different way to carry your books. Maybe a wheeled book bag that would prevent you from lifting anything too heavy. I was told not to lift anything heavier than a gallon of milk as it could cause too much strain. The biggest lifestyle change I made was allowing myself to get plenty of sleep. I am always somewhat fatigued and I know that I need a lot of rest. Walking or exercising mildly can make us feel better too. Eating right is always good and not taking risks such as riding rollercoasters, motorcycles, etc.!