Requests for Help, Advice and Guidance

A Mastocyctosis Angel, created by a fellow patient
and gifted to me... a symbol of compassion and energy.
Gift of Extra Spoon

Since many of you reading this blog are actually personal friends with me already, you know that I've been extremely busy for the past two months with family events. Whenever I get busy in any aspect of my life, all other areas of my life must be put on hold. I simply do not have the energy nor health to focus on more than one thing at a time.

Every now and then, I get newly diagnosed patients asking for my help, advice and guidance. Just this past month, I received a number of requests for such help but I have been silent in my responses and feel I should try to explain my situation.  

If I get involved in helping newly diagnosed patients, nothing else in my life gets done. There is no additional energy for anything beyond what I must focus on at any given time. Systemic Mastocytosis literally sucks the life right out of those of us struggling with this illness. Providing help requires energy... energy I could otherwise use elsewhere.

If I get involved in family events, such as has happened in the past couple of months, nothing else in my life gets done because I have no additional energy.

When I say that "nothing else gets done", I mean nothing else gets done. I only have so much energy each day. There are no hobbies on the side getting my attention when I must do something else... there is no socializing during downtime... there are no errands being run... there are no household chores being accomplished... I only have the energy for one thing at a time. The rest of my time is spent sleeping, resting and recovering (and eating and using the bathroom, of course, both of which require valuable energy). Actually, some days I have so little energy that even personal hygiene gets put on hold since I know that even a shower will require more energy than I have to expend.

When things get busy, I go through so much additional medications in an attempt to stabilize my health as much as possible that I need to be careful when coming down off of these additional medications to avoid destabilizing my body on a cellular level and causing a cascading effect bringing on anaphylaxis. This also requires my attention and special care which puts everything else on hold.

As I mentioned above, lately I've had a few newly diagnosed patients ask for advice and guidance... sorry, but because of my struggles with Systemic Mastocytosis and extensive spinal injuries, my first priority is me. At times like this when family events are lined up like a long chain stretched as far as the eye can see, I must look out for me. I drop everything else when I know I must accomplish something. In this case, I must ensure I have the health and energy for these family events therefore I drop everything else.

Dropping "everything else" means no hobbies... it means no socializing other than at these family events... it means no daily chores... it means no medical appointments which also suck the life right out of me (to my doctor's dismay and disapproval)... it means no participation in my usual support groups (to be honest, these support groups are far too draining at this stage of my illness)... it means no attention nor energy is directed toward requests for help, advice and guidance. My energy and available health is just not at a level for me to expend beyond what must be accomplished.

"I", which includes my health and energy level, must come first otherwise I will be of no use to anyone.

I've spent a career helping people... countless people... to a level most people will never understand. I enjoy helping people. Over the years, I have also helped countless newly diagnosed patients to an extent that even I probably don't understand. At this point in my life, however, "I" come first because I know I will be of no use to anyone otherwise. So, for those whom have recently asked for my help and guidance, I am sorry. This is a time for "me".

And, be forewarned (including my doctors), this chain of family events which requires my attention, health and energy has so many links that this chain reaches all the way into the month of July. I can't be there for those closest in my life if I don't put "me" first so this is where I'll be for the next six months... watching out for "me" so I can safely and effectively navigate through the next six months.