For those of you who are awake.... here's my two cents.
Years ago I thought my fatigue was impossible, ridiculous, life altering. And I pushed and pushed through it and got along. When I read the stories of you who can push through it, I say, keep pushing because you can.
Now I am in that category that you see called "crippling fatigue." It is completely different than that horrible fatigue of years ago, that I thought was horrible, but which I could push through.
I do not know how you can keep yourself in that category of fatigue you can push through. I thought for me it would be to just keep pushing. I no longer can and it was a real big mind-blowing time when I figured out OMG I cannot push through any more. This type of fatigue has a million components: I have foot drop on both sides so walking is a terrible amount of work (new AFO's on the way), I drop pretty much everything I pick up, I am dumber than a bag of hammers, I itch all over. When the disease goes from head to toe, there is no way to continue to push through. If you are RRMS and on a DMD, you will not get to where I am (I pray). I got this disease as RRMS ages before DMD's existed and now am late SPMS. But, I'm still walking, and I am not giving up.
And neither should you. Take naps. They are good.
Make your neurologist your closest ally in this life. I am lucky to be receiving care from a fabulous neuro in Boston at the Partners MS Center. I do not know what I would do without him on my side.
I guess I would Just keep pushing.
Years ago I thought my fatigue was impossible, ridiculous, life altering. And I pushed and pushed through it and got along. When I read the stories of you who can push through it, I say, keep pushing because you can.
Now I am in that category that you see called "crippling fatigue." It is completely different than that horrible fatigue of years ago, that I thought was horrible, but which I could push through.
I do not know how you can keep yourself in that category of fatigue you can push through. I thought for me it would be to just keep pushing. I no longer can and it was a real big mind-blowing time when I figured out OMG I cannot push through any more. This type of fatigue has a million components: I have foot drop on both sides so walking is a terrible amount of work (new AFO's on the way), I drop pretty much everything I pick up, I am dumber than a bag of hammers, I itch all over. When the disease goes from head to toe, there is no way to continue to push through. If you are RRMS and on a DMD, you will not get to where I am (I pray). I got this disease as RRMS ages before DMD's existed and now am late SPMS. But, I'm still walking, and I am not giving up.
And neither should you. Take naps. They are good.
Make your neurologist your closest ally in this life. I am lucky to be receiving care from a fabulous neuro in Boston at the Partners MS Center. I do not know what I would do without him on my side.
I guess I would Just keep pushing.
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