Yes, Chiari is a chronic condition, but with good doctors, more and more research being done and education is really important to learn about it. When I was first diagnosed, no one had ever heard of it, including myself.
Here are some of my tips to you all, and love to have more on this topic.
Finding joy, and happiness where I can.
Education on Chiari and learning more about it.
Learning new treatments that come up, and what you all are telling me you are going through.
Learning to accept my condition and learning what helps my symptoms and getting past anger that I have it. Letting go and forgiving.
Chiari usually strikes folks when they are in their 30's 40's & later in life, when we are busy, and having families and careers, so it is difficult to adjust, but, by having a better attitude, learning to be chiari smart and creative. By saying that, I will go a little further, Listen to what your body is telling you. Do not fight fatigue, migraine, or other symptoms, rest, and sleep. That is one of my keys to controlling a lot of the chiari pain.
Don't over do yourself, take breaks and some weeks it takes me all week to do all my house chores, which if you start on one room at a time, you will get it done. Don't try to do it all in one day, rest.
As Shirley says, use your couch!
If lifting is a problem for you and vacuuming, then slow down, I cannot lift, it will really bring on a bad back ache, or a headache, and my back and shoulders hurt, so watch how you much your lifting.
Try to live a healthy lifestyle in your diet, and walk. My neurologist says walk, it is free, it gets you out of the house, it helps your heart, helps your sugar levels, & your mental state.
Try to stay as active as you possible feel like, but don't over do it. I still work at home, and it takes my mind off a lot of my chiari problems.
Don't give in to fear. Many of us have fear, depression, and get down on ourselves. Remember, we did nothing to bring on this condition, it affects our nervous system. But, don't let it make you withdraw from life. Keep on living as normal life as you can.
Don't be afraid to ask for help, meaning, your doctors, your friends & family, and folks that make you feel better about yourself. Learn to lean on them.
Learn to have much faith, stay positive, laugh as much as you can,find joy, peace, and contentment where ever you can and try to always have hope. With more and more technology that is taking place in forms of research, we need to have the hope there.
Folks like Carla, and Teresa B., will be walking on the Conquer Chiari to make folks aware of chiari and raise funds to go for the research we so desperately need.
Chiari can be life altering, but folks, I have met some really amazing folks on here, that just don't give in, they encourage, they keep on trying to live a normal as possible life.
Be kind to yourself, and if folks don't understand your condition, just think of it this way, they really don't understand because no one has told them. Give them handouts, literature, books, whatever it takes to put it in their faces.
Learning to communicate with your doctors and having a good relationship with them. I find that is a great method of them learning to treat me. Since I was diagnosed, my GP has been able to send 3 of her patient to neurologist, and they had MRI's, and they all had Chiari. She knew that I was suffering with the same symptoms as the folks she referred.
Having a good support group is wonderful. This group has some really awesome, amazing folks here, who are very very special.
I would love to hear from you on your helpful tips too.