Comfort and Chiari
Living with Chiari can be very painful and uncomfortable, but we can't let this stop us from living our lives. We have compiled a list of comforting things that help to get us through the tough times.
Heating pad - Helps to melt away the tension and pain in the shoulders and neck. Can also be used for the aches and pains in the arms and legs.
Thermacare (portable stick on heading pads) - Same as above but can be used anywhere that you go. It's a good idea to have one with you at all times. Small enough to keep in the the glove compartment, purse or briefcase. Available at pharmacies, grocery and super stores.
Ice bag - They're made out of canvas with a screw on lid (available at pharmacies) and is another thing to keep handy even when on the road. You can alwyas stop at a gas station to fill with ice when getting a headache. This is also a good thing to use if you get overheated easily when outside. Putting one on the back of your neck cools you down somewhat.
Home made gel ice pack - Good for when you need the ice but can't deal with pain of the shape of ice cubes touching you. They are made by filling a ziplock baggy with water and a cup of alcohol, and placing the bag in the freezer until needed.
Waterbottle with attached fan - Use to keep your temperature down when in the sun for long periods of time. Drink lots of cold water also.
Chillow - For those of us that get hot in bed at night, the chillow is a lifesaver. No more rotating the pillow all night to find the cool spot. It's a pillow topper that you fill with water and it rechills itself just by running your hand over it.
Good light weight sunglasses - Our eyes get irritated easily and this brings on severe headaches. You don't want ones with thick temples because this seemes to put pressure on the side of your head and that's not a good thing.
Buckwheat C shaped pillow - Used for travel, they keep your neck stable during long trips, which in turn stops a headache from coming on.
Sleep music CD & portable CD player - You could also download sleep music to an MP3 player. It helps to ease you to sleep on nights that nothing else seems to be working.
Lavender Vanilla pillow mist - Spray your linens before bed and this will help you get a good nights sleep.
Slippers - For when your feet are feeling like they are freezing. (even if everyone else is wearing sandals)
Sweater or jacket - Always have one handy for when it's in the 70s but you feel like it's in the 40s.
Crocs - These are the most comfortable shoes. They help with the leg fatigue and pain in the hips and knees. They are funny looking but worth it to be free of pain.
Book stand - For those who read a lot. The book stand keeps your reading material at eye level, so that your aren't straining your neck with your head down. Available at most book stores.
Earplugs - For when you don't want to be left out because of the noise giving you a headache. Great for hockey games and other loud sports events. Can even be used at concerts. It just brings the sound down to a decent level.
Cushy pens or finger rests for pencils - You can write twice as long with these kinds of pens before feeling pain in your fingers.
Small bags or purses - Bigger bags put pressure on the shoulder muscles and the neck muscles then tense up causing pain.
A loving, understanding caregiver - This the utmost important of them all. You cannot live with Chiari alone. It takes away a lot of your old self and the things that you used to be able to do. This person (whether they are a spouse, parent, sibling, or friend) needs to understand the disorder and all the feelings and pains that we endure. They need to be there for us no matter what, and we need to know that they are there. Whether it's helping us do things, just listening and having a shoulder to cry on, or standing up for us when we feel that we can't do it ourselves, they play a very important part in our lives. Make sure and tell them how important they are to you and how much you love them for being there for you in good times and bad.