The other day, I touched on why October and November were the roughest times for us. The Feeding tube was from our first stay at UCSF in November of 2012.
That was our hardest struggle time. But, October 17th, 18th and 19th of 2012 are forever emblazoned on my brain as some of the worst days. Every year I re-live those days on repeat in my brain.
This year, I have been sharing a lot of those days. I have been doing a lot of advocating and support group work. I feel it is important to share. Sometimes people are in such a state of despair that they need to know that you can relate.
Becasue, usually when your life is falling apart in one place, it’s falling apart everywhere. It is an impossible feat to keep it all together all the time.
This sharing of information, listening and relating to others stories is therapeutic on most levels. It helps us all feel like we are not alone. We can share information and tactics for coping with a “Rare Disease”or being chronically ill.
However, is it taking a toll on me emotionally? October and November are emotional months for me anyway. But the constant reliving of what happened, the what could have happened.
Hubz says it is. That taking on helping everyone else is draining me emotionally.
I like to think that I am just sharing. If I can help just one person not to have to go through what we did…
Plus, although, there might be some lingering effects from the actual sharing of what we went through, I feel good knowing that I might be helping someone else. That what we went through could be avoided by talking to other people about it.
I always felt like we were treading water without being able to see land in any direction while were were going through the worst of it.
I can be a life preserver for someone. A bouy. A spot of land in the distance giving them a direction to head.
During the worst of it, that was all I felt like we needed.
That is why I do what I do.. support calls, support groups, Advocacy, advisory.
It’s just one more step in my CVS adventure. What’s yours?
#IcareaboutRare #CVS # CyclicVomitingSyndrome #Chronicallyill #MigraineVariant