Wednesday, September 4, 2013

When you run out of Words... When What you "say" does not makes sense... When Life seems So "Blown to the Four Corners of the Earth"

I am not sure why I am even trying to "write" today. I have not admitted it to myself yet, and most assuredly not admitted it to anyone else, but I feel I have "nothing" to put down in words that anyone, even myself cares to read, much less understand. I have lost all ability to truly share of my feelings. I fear sharing all of them, because I would never want anyone to deal with the frightful pain this place inside comes from. It is a wound that continues to grow... like a hole in a sweater, you pick on, and it becomes larger, and rips more every time you touch it. My thoughts are so jumbled, my spelling so "off", from the tips of my toes, to the very "synapses" in my brain, nothing is working properly. I can't even look past the emotions that bind me, and try to see anywhere I will recover. All I can do, is barely keep my own self "watered". Much less try to water my outside plants in the early morning light. The very things I used to love, all seem futile. Anything I have ever enjoyed doing, seems hopeless and useless. Where do you go, what do you do, how do you get over... feelings of absolute despair? I thought I knew... and maybe I do for others, but not myself.

My son made a comment to me on the phone yesterday that really hit me hard. He said he wished sometimes I would just say to him, "Things are going to be okay"... they will work out... and I always thought I did say that... to him and his sister, but I guess I was wrong... and for that I am even more saddened. I thought I had "supported" them, and given them legs to stand on, and a foundation to build upon. Yet, now I find out, that I may have not given them half of what they needed from me at all. I thought I have told them "it will be okay"... throughout their lives, when things just go awry. But, after the long conversation I had with him yesterday, I came to realize that sometimes I treat them too much like "adults" in many ways... rather than treating them like they are my kids, even though they are grown. I have always felt like I did not want to "tell them what to do" when it came to them being grown, and having lives. I never wanted to be one of these Meddling Mom's" that was always right up in their business. I had a parent like that, and boy did I ever run the opposite way... with my own. I won't even give them my advice, even when I feel maybe I should. I fear they will not appreciate my view on things, thus rather than "run them off", I have kept quiet and only offer what they ask of me. Now I see I probably have stood off too far, and been more distant than I have wanted to.
I can't go back and change what is the past... but I can change what happens in the future... and I hope they know I always feel like I told them, that things will be "okay"... I just say it in a different way than I guess I should... so I shall try and make that different for them... they both have lots of stuff in their lives that also cause ups and downs... one raising three kids... and the other recently out of a very long term relationship, now with a new job, in a new part of the state... and that is a very, very, difficult place to be. I know... I was there... with a new place, not knowing anyone, new job, out of a home, and a relationship, that even though sucked, I was not alone... and that loneliness sucks... it takes time to meet others, to get used to a new part of the country, to get used to a new job, to find somewhere you can call home... I did it, and I know they can also... and it will one way and one day soon, be just fine... and it will be totally okay... but when you are first there in it, and out of the old... it is just not a pleasant place to be. I can say it was one of the best conversations we had in a very long time... and for that I am blessed...
I am still reeling from my own crap... I am very concerned about the physical issues that face me, and feel all of the doctors have just "missed the boat", on part of what my health issues are... but we know our bodies better than anyone else... and I think they possibly due to it being so difficult to diagnose, have missed out on the fact that many of my symptoms lead to MS. Even my Rheumatologist was in agreement with me two weeks ago. Fortunately, the Rituxan is not being used on a trial basis for MS, thus as he said, possibly we may "kill" two birds with one stone...
My son made another very good point, when it comes to be "lack luster" thought about my writing... it is time for me to "re-invent" myself... my writing... I need to find a new way to express my thoughts, a new reason to write... some other way to bring out what I want to say... and he is right... I think I am bored with my "old ways"... I am sick of my illness, yet I want to help others... I am sick of speaking the same old thing, day after day, and it seems no one gives a damned... yet I write for me... and he is right there... I always began writing for my own self... and then later it became a place that I wanted to share with others... I had written thousands of things well before I shared many with anyone...

So, for all out there... I want to try and give this month over to "National Chronic Illness" Month and Invisible Awareness Week... I am not sure how much I will feel like doing on either, but I began yesterday, by "sharing" the information on FB, and here on my blog...

I will try and get more involved... for 3 years past, I did get a proclamation signed by our Governor of TX. But, somehow I missed doing that this year. I have done it for Lupus also. Of course this year they have a place to post those on their websites for these occasions... and of course this is the first year I did not get one done. I guess with all of the things happening health wise I missed it. I am looking to see if I can still get one signed by our Governor... it is a way of getting our information out there in the public eye for sure....

I hope you also find some small way, or some huge way to also give a moment of yourself to these two special issues... for they are both so critical... and for all of us with illnesses ... we totally "get" both... why do people say "you look good"??? when they do not know... and just the chronic daily grind of being chronically ill...

I hope you also find your niche... your place... your own way... into the light... and out of the dark... I am still feeling around in the dusk... not seeing light just yet... and I pray the words finally come again... my greatest fear is I will lose... my voice... forever... and that frankly scares the hell out of me... for where do I go... what do I do... without it???


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