breaking a cycle- round and round i go any ideas?

Hi All,

It seems to me that things keep repeating themselves. Here is what happens
I get a really bad headaache, which leads to an IV
after the IV, I have several days to 2 weeks where I feel ok- almost normal, and during this time I try to live a relatively normal life. I want to do things- things like some extra volunteer work, go to lunch with a friend, go to the beach with my father. I still keep it to 1-2 activities a day.
Then the headache comes back- I spend a week or two in pain- though I still mange to do some stuff- volunteer work, training at the gym, but i rest more. Then the pain gets bad enough for another IV.

It seems like no matter what I do I end up losing to this disease in the end. It doesn't help that last night, my mother basically said "i have no sympathy for you right now- you feel well and then do too much." I know her thyroid is screwed up and she had just come back from a concert she didn't want to go to. I also know that she does the same thing.

Is it weird to try and live the little good time I have to the fullest? Do I try and break the cycle. I don't know what to do. I know the headache is bad now and nothing is helping. But I will smile and pretend I am ok todays,

Any ideas?
Does anyone else do this?

Pain free days,
sailingm

Sailing, I can sympathize with you. I spent my entire life like that up until I got Lyme disease. Now I cant push through the day anymore most days. So, I say go for it and do what you can while you can! Although I must say, I get upset with my daughter when she overdoes the fun stuff and cant get to school the next day. I figure next year when she gets to college, she will give herself reasonable limits. Or not...
Enjoy today,
Cindy

I agree! I say go for it when you can! When we feel good or "normal" we need to get out and be active - it is what keeps us sane. When I do get out I try to minimize exposure to my triggers but there are times when I need to forget about my migraines and just enjoy - even if I have to pay for it later it is so worth it. We spend so much time down and out we need to get out when we can and enjoy!

Yes it's quite the dilemma. If you try to live a normal life when well you get accused of doing too much. If you lay around you get urged to get up and try to do things. Catch 22. The real question is, if you did not do those things would you still end up getting ill? I suspect the answer is yes. It's just too easy to cast blame on what one can see ( the activity you did, the food you ate, etc...) than to accept that there us no easy causal link to point to.

I feel that you do need to take advantage of your good days. For most of us they are few and far between! With that said, there is a measure of responsibility as well. Doing too much or doing something that triggers it probably isn't the best idea. In the long run it isn't worth it to have a huge episode when you could have had some fun and enjoyed it fully, but not helped the migraine along. It is a fine line and only you know your limits. But yes, you need the release to know that life is still going on, and that it is worth enjoying! I get what your mother is saying, but really do you need to hear that? NO. The reason why is because until she is completely in your shoes, she will never fully know, never fully sympasize, or even understand where you are coming from. I admit, when you are feeling decent it is tempting to do full out as much as you can because you never really know when you might be able to do it again. I also know full well the fear that many people have that maybe the pain will never go away and therefore, pack as much in because it MAY NEVER HAPPEN AGAIN!! It is a scary thought, but I have had it many times, and screwed myself doing too much. None of this means you won't get that migraine as bad, who know how these stupid things choose to attack us? There is no logic to that, but you also can't beat yourself up the other way either, I should have done this when I felt like it because I have the migraine anyways! It is a dilemma you just can't win!! Good luck, and I guess just know your own limits and go with that.

Strangely enough, in polite society many years ago, it was deemed that ladies and gentleman shouldn't over evert themselves. Exercise was regarded in some ways as bad for the health.

I am coming to the conclusion that they may have had a point.

Like you I can muddle along, basically doing nothing and survive quite well. As soon as I do something that even vaguely could be construed as exercise, everything goes wrong.

I have no idea how to overcome this.