Saturday, August 20, 2016

Being practically "allergic" to life.

*Disclaimer A*

Imagine if everything you did, and everywhere you go, is ruled by a slew of limits and need for modification. Imagine being practically "allergic" to life. It's a very hard way to live. It's exhausting, it's daunting. But in spite, for some, this is life. 
*Disclaimer A*

This young woman lives with Mast Cell Activation, a common EDS co-morbid, but occurs without EDS too, which is (other than gastroparesis) a reason why many EDSers end up on feeding tubes.
Having to limit and modify food intake to the extreme, and even having to give up on food altogether, crossing over to dependance upon medical intervention for one's daily sustenance, is one of the roughest things to go through. Currently, many of us are having to go through it. I know what I'm talking about because I go through it too, and I too am at risk for needing a tube in the future, for a few reasons, and I've been fighting those "reasons" tooth and nail for the past year especially. At this time I'm succeeding at preserving my ability to eat, albeit strictly limited and specific. I sure hope we find better ways in the future, via better treatments to target the sources of why the inability to process our foods.
No, this isn't a fun way to live. It's an incredibly difficult, painful, and tragically limiting way to live. Solutions must be found for these diseases, because in fact, this IS no way to live, and it shouldn't be tolerated. We can do research, more funds must be allocated somehow. Perhaps they can be raised..
However, we don't have these solutions yet, so we only have the power to change what we can, while working towards the change we want. In this, I'm glad this lady's able to be so optimistic. After all, what choice does she have? If not, it's easy to feel like you don't want to live at all...
This experience demands striving for an outlook of glass is half full. Easier said than done for sure, but in order to not predominantly hurt all the time, we *must* find reasons to live and remain optimistic..and we can. We still can, and we will. I know 'cause I do this every day.
In retrospect, there are moments and days where one will feel depressed, cry, be angry and want to scream. How could there not be? When those times happen, I believe we need to let it out. There is no shame in having strong feelings about this horrendously trying experience which some of us are dealt. In terms of natural human behaviour and psychology, it's actually normal. Furthermore, in of such a situation there is no need for slapping labels on it. Personally, I find that a little offensive, in light of considering the circumstances.
People who live like this are going to have depressive and angry moods sometimes. Just like when Brynns' parents say "some days she says 'I can't do this anymore!" If we didn't have those feelings sometimes, we wouldn't be human. Just as long as it's not happening most or all of the time, which could then be accurately classified as "situational depression" ..as understandable as that is.
We do have to let our emotions out here and there, as well as have personal outlets for it, while overall striving to fight situational depression, by seeking joy in any way we can, in any way we choose which personally works for us - while perhaps striving to increase awareness  ‪#‎forawareness‬ ‪#‎mastcellactivationsyndrome‬ ‪#‎mastcellawareness‬‪#‎chronicillnessawareness‬

No comments:

Post a Comment