Wednesday, December 7, 2011

Alice Cried (7/15/11)

Alice then had a really good cry... 

Alice fell down the rabbit hole/ stepped through the looking glass, warndered around got LOST and saw Wonderland. Alice saw that the cheshier cat had led her astray and then disappeared.  When she stops, really stops, to look around, to take stock of her sitiuation she does what we all do when we see it is hopeless.... she cries.. and I don't blame her tonight at all!

It has been a while since I have posted... and somethings have happened.
In May, when we came home from our mini vacation, I got really sick, and after being in bed for 2 weeks I drug myself to the dr to find out it was Fibromyalgia...
 At first I was just relieved that we have a name for what is wrong with me, I was honestly happy that I had not gone crazy.... I was and am really sick. I think I can honestly say that is when the proverbial shit hit the fan. The ones I count on the most for support and understanding turned on me. Yes, I know they do not feel that way but this is how I FEEL: Betrayed. In the last 2 months I have heard so much negative crap until I am ready to weep. "It is a catch all term, Joni shake it off and get moving, I know just how you feel Jo I have bad days too. if you would do this or that it would get better, Don't name it Joni that gives it power over you." All Utter CRAP. 
 So, let me do what I always do and start at the top: "it is a catch all diagnoses" it is NOT it is well researched with more research being done every day. Before you say that it is a "catch all" I urge you, do your home work, look it up and you will see that it is real and lots of people suffer from this.
 "Shake it off and get moving" OK, in all fairness that did not seem that far off to me so I got busy, got moving and ran myself into the ground literally. I am at the point where I can't go any more. Lord I never knew what tired was, really was, till now! 
 "I know just how you feel Jo I have bad days too".. excuse me but there is no way you can know how I feel.. you just can't because you do not have my life, my body, my aches and pains.. you are not me.. I hear this one more time I will have a calf.
 "If you would do this or that it would get better" Again in fairness, I have been trying this, that and some other things. Somethings are better but as I lay here tonight to key this out I only see a bleak spot that is showing me how ignorant I really am, all I can see is how much more I have to learn.
 "Don't name it Joni, that gives it power over you"... it has a name and very real symptoms. All the praying and believing in the world has yet to change it. I have just stopped saying it because I am tired of the comments and looks but by not speaking it I have dug myself a deeper hole. If you don't let the ones you love, the ones that are suppose to love you, know that you are sick, that you are dealing with something beyond your control, if it is taboo and never brought up then they go: "Well, she must be better she never says anything any more, she never complains, she has yet to stop". It is nice on the surface to say nothing is wrong but when you look just a little deeper you will see the paint is fading and the colors are losing their luster.
 I know I need to be keeping a journal and I had great plans, but like the best laid plans of mice and men they fell to the wayside. I know I need to pace myself but my life is to hectic. I know I need to slow down but God when do I have the time.  I have learned that if I do not get enough rest, SLEEP, then I sink to a low. This is where I find myself for the last couple days, I have not gotten to rest and hence I am very low tonight.....just the thought of the busy weekend ahead and I have retreated to my bed.
 I remember in May thinking "OK fibromyalgia, I got this! Big deal I can handle this, it will NOT run my life, it will NOT define who I am, it will NOT control me". HA HA HA HA HA jokes on me. It is like a toggle switch that has been flipped and every day is different. I can't make a plan, as I would with anything else, to divide and control, when I do not know how I will feel that day till I open my eyes. I am ANGRY! ....
  Now there is a word that is not strong enough for how I feel.. I am pissed off honestly, why me? WTF did I do for this? ~shakes head~
  So to sum up, Alice was lost and had a good weep, then happy,happy she looks up and sees.. HOPE. A path that will lead her home in time for tea so she can tell Dinah all about her adventure. 
     I already see this is a process that I am going through. I knew I would but I think that I just expected to be done with it by now and all the advice that I give my husband and kids "chronic" means this will not get better in a day or week or month or year or ever.. I need to take to heart and I have not... I am coming to grips with this and I do not like it. I am angry that it seems my life has gotten turned upside down and I can't find the flip switch. 
 Knowing that a lot of this stems from exhaustion does not help much. I know that tomorrow will be a new day but I am not confident at this point that it will be a better day. 
 I feel confused because I don't know what my next step should be. I am sad because it seems like I am caught on a roller coaster that has no beginning or end with nothing but constant up and downs.
I know that I need hope to move forward, because without hope all we have is death and despair. I know that I am loved by many but tonight I do not love myself very much. At this point I am with Alice sitting on the mushroom having a good cry, soon tho, so very soon I will look up and see HOPE, a path that will lead me from wonderland and home in time for tea, with a loved one that I can share this adventure with.

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