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How Do You Deal With Your "pot Holes"?


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Why is it that every time you start to feel better or get a taste of what it is like to feel alot better, and then you run right into the "pot hole". :) The last week things have been getting better, and then last night I started to get the heart racing, could not sleep, then today came the chest pain, back pain, vision problems, and the headaches, and now I am sitting in my reclining chair with my oxygen, and I can't sleep again. I still have tons of hope that things will get better. I am just so woren out, and still can't sleep. I called the doctor on friday before they closed, as I was having the heart racing slowly getting worse, they said the understand, but don't want to change anything untill I see them on the 27th. So I guess we will wait and see how things goes. Maybe I just overdid...... I am just venting about my newest pot hole, when I should be thankful for the great few last days I have had. I guess we take them when we get them right?

How do you all deal with the pot holes when they come? Do you think you make them worse as you made of over done it? If you over do it somtimes how do you learn to pace yourself when the good times come?

Well thats for listening to me! Have a great weekend! :)


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I think one of the hardest things in dealing with this disorder is adjusting emotionally to the ups and downs and trying not to have too many expectations from ourselves.

I don't know what will work for you because we are all different. It took me a long time to get to the place I'm in now. Generally speaking though when I have bad day or symptoms flare I try to "roll with it". Sometimes that means lying in bed or on the couch with a favorite DVD or book. I may write a note to someone, color, talk on the phone...whatever is a quiet activity that doesn't make my symptoms worse yet gets my mind (at least slightly) off of how bad the symptoms are in that moment.

Sometimes this doesn't work. Some days you reach your point where you are frustrated and angry and you need a good cry. Although that's hard too because it can be so draining on your body and make you feel physically worse.

I find it difficult to plan things. If I'm having a good day and able to get things accomplished then I really try to do as much as I can and enjoy the day knowing and preparing for the next few days to be virtually useless to me. Sometimes I "pay" for the active days and sometimes not , but if I don't expect myself to get things done after a very productive day then I'm not as disappointed and thus, not as frustrated.

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