Hi guys…I am new to the forum . As i read through the remarks etc…i see a common denominator…i.e. pain . I have been living with CIDP and CFS since 2014 . Some days bad…some days less bad…but having been a person always boosting morale and positive wellness…changed after the onslaught that is CIDP.
Nobody wants to be a moaner and a burden and after a lifetime of worrying and caring for other people , i had to settle for being watched by my wife and daughter like hawks…my son avoids the whole thing…but does ask me every now and then how my arms feel ( he wants to go fishing ).
They don’t know when the next spasm might come ( me neither for that matter ) , although i do have some warning signs as to no or little sleep when the bad pains come .
At hospital , i was classed as difficult…even on paper…empathy was the last thing i received .
But in rehab…surrounded by people with Lupus…polyneuropathy… etc…i felt fine.
Nobody questioned when you weren’t at gym or leisure class…the mild pool was better than tge hot pools and the massages were to die for…dry needling was the worst thing i could ever say yes to and punished me for a month to the point of paralysis…would not suggest it to anybody…
I now…five years on…have weened myself off pills…taken to the "pain - gone -pen " and only take morphine when my body tells me to.
As of late , i have had this really nasty spells of…fatigue…droopy eyes and spasms . Arms that don’t want to hold my grandchild…let alone my fishing rod…even catching a fish ( even a small one ) seems to drain my energy .
Well…in short…that is my story and my life although i have dotted down every day of my life so far…something my GP reckons is not good…as he thinks it amplifies my symptoms…(a-hole…i don’t wish this on you) , but merely want you to know what my days are like .
For those of you who have not read the spoon theory…a must read to everybody around you …so they know what your days are like…
Many thanks for a empathetic group…
Sharing is caring
Good things happen to good people…i hope.
We are going to wake up one day and it will all be just a bad dream… just a nightmare - hopefully.