Re: What i do when my illness will not allow me to do the things i need to do

[Guest guest]

Dearest Joanne,

If I had my brain cells working right, I could write the exact same letter you

just wrote. This describes my life perfectly. I have managed to get myself off

of the floor in the past year, being able to go through the day without having

to nap quite frequently, and I have managed to reduce my pain a lot. But

sometimes I wonder if I am just use to this pain and it is normal to me now. It

sickens me that I am still on prescriptions and my doc refuses to let me stick

with only two, he insist on the other three to make a total of five. So I get

them filled once and those three sit in my bathroom closet. I don't want to

take them.

But as I have talked with you about the little girl we were taking care of since

she was eight weeks old and has went home to her drug addicted parents, is

totally eating me up. I miss her so badly and worry non-stop about her well

being. Here at home, I can see her, hear her and look for her still, even

though she isn't here. I have cried for a week now mostly all day. I have

tried to control this and stay busy but, my heart and mind won't let her go. I

am grieving for her and I just want this to hurry and pass.

But back to what you wrote. I too have this battle between heart and soul and

mind. I fought to get where I am today for myself and now I am at a

standstill. I haven't the money to get the foods to lead me to complete

wellness. My husband does the grocery shopping usually day by day. He didn't

like the things I bought because I used to go for nutritional things and no

junk. He likes his ice cream and cookies and cakes very much. This started

about 15 years ago. And you know what?, first came chron's disease and

ulcerative colitis, then cancer, and now fibro. And I find myself asking God

what did I ever do to deserve such suffering when I have served Him faithfully.

Then I think of all the suffering He did for me and He died for me so that I can

have a mansion in eternity and live with Him forever.

Because of Adam and Eve eaten from the tree of knowledge which opened the doors

to illnesses, diseases, retardation, heart break, suffering are man made

things. This isn't what He wanted. But we as Christians know that He is with

us and will carry us through these life altering situations. I know you already

know this, maybe I just needed to remind myself.

The message I wanted to say to you was again, your life and mine are

duplicates. I am stuck for now and can't move forward. I have to let this

grief take its course so that I may get back on course. I just hurts so bad.

________________________________

To: fibromyalgiacured

Sent: Thu, July 7, 2011 10:44:45 AM

Subject: What i do when my illness will not allow me to do

the things i need to do

In the past i used to always be in a hurry, always harrassed and angry because i

always had too much to do and no time to do it all. The more i punished myself

by pushing myself the more likely the likelihood i would end up on my knees

crawling around the floor thumping the floor and screaming 'Lord help me

PLEASE!!!!!!!!!' And then spending hours choking on the pain in my throat and in

my chest, wanting to cry, but never doing so, saying 'what on earth have i ever

done to deserve thid' followed by a long list of all the cruelty from other

people which deep down i new had resulted in me becoming ill. I felt like I

could not breath, I felt I would die, and my shoulders would freeze up along

with a nerve, muscle close by to my sacroilic joint that mercilessly twisted and

twisted. And the list for all this goes on and on. What I could not see then was

this was not a me against, fibro, the world, and only my crazt brain new what,

this was about me, not

taking care of me in the way I needed to be taken care of

You see I wanted, no back then I needed, somebody to just say, Joanne, I am

here, I am your friend, I will help you, but that person was not to be found and

although i had a good husband, a poorly husband, but a very good man, and

although i had my freinds here at this site, and although i had friends at

Alanon, still the days came when i would end up crawling on the floor,

petrified, angry, sad and beaten

What i had to do was learn how to be my own very best friend, to treat myself

with a whole lot of patience and love. To be my own teacher, nurse, doctor,

therapist, parent, friend, everything. I needed to start looking out for me, the

real me, the me in my cest, the child me the soul me the precious me

I needed to start listening to the inner me and start recognising what her needs

are. What she wanted and how she felt. This was not easy and i actually needed a

therapist and alanon to help me with this but what i realsied was the person in

my chest was somewhat different to the raging person in my head

the person in my chest was still young, child like in fact. She wanted and

needed a lot of love and fun things to happen so that she could feel confident

inside this unbalanced body of mine

She needed songs and music, and dance and play, she needed nature and gardening

and art and creativity and hymes and prayers and faith, the faith of a child the

faith i had before all the crazy things that had gone on in my life had happened

She needed to feel safe and secure, she needed to know that everyday was not

going to be pain and agony, that every day i would not lie awake in bed tense

and angry thinking over how had this that and the other not happened, how

different things were.. This part of me needed to feel embraced and adored. This

part of me needed to snuggle into the arms of my loving Lord

The part of me in the head needed this, but at that time she was so busy telling

me i had no money no support that i would not even be able to achieve what i

needed in that day let alone any other day and on and on her list went.

Regardless of the racket in my head i just turned to the loving sweet motherly

voice i had always used with my children when they were ill and i spoke kindly

to myself saying, I have never before known such deep faith within me that

things are going to be alright, Lord give me your faith

And I would deliberately find activities that met the needs of my inner child.

Yes the suffering child the one in my head thought all this was a load of mumbo

jumbo, she would even tell me it was insulting, demeaning, rediculous to have

such notions. Just as much as i was loving my child in my chest, my soul I also

learned to love this suffering part of me, the body me, with the exact same

compasion and patience

Anyway, I did in time learn how to avoid the crippling crawling around the

floor, the intense muscle spasm, the incredible rage and so on, but whilst all

this was still going on for me I needed to find activities that would keep my

inner selves at peace and one way i did this was by find wholesome films to

watch whist i rested in bed

Here is one of my favourites

http://www.youtube.com/watch?v=-TAxtLl_jbI

When my doubting mind says what is this all about why are you doing these

foolish things, I reply, Because I am worth it

Love Joanne