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Joined
Aug 21, 2015
Messages
10
Reason
DX FIBRO
Diagnosis
03/1996
Country
US
State
MI
wow, don't know what to say. I've had fibro for a long time, and its progressed until I feel isolated and alone, and over-joyed when I have the energy that actually has something to do with just fun and NOT another doctors appointment. It makes me sad, and exhausted, wears on me. I've never worked harder for anything as I do to maintain myself and diminish the pain I feel. Swimming, (gently), stretching, walking. On top of it all - 2 years ago I lost my abusive father and 4 years before that my mother. I loved my mom so much. Sometimes I just want her back so I can lay my head in her lap and cry from frustration and exhaustion. I know its heavy this introduction, it's the truth. I need to feel safe where I go for support and not judged. I hope this is the place. thanks.
 
this is exactly that place.

i totaly understand about the loss of your mom. i too lost my mom.
she was 55 years old. i just now turned 53. her sister and two brothers all passed at 55-60 years of age.

i think my mom knew something was wrong in my body. she was always taking me to doctors.
never knowing why i was going to them. when the mayo clinic told her i cant help your son and we left.
everything changed in her. she began spending more time with me. telling me everyday i love you and things will get better.

she would take me on road trips up and down the east coast. she wanted me to see it all. i never knew why we would do those trips.
but i just knew she loved doing them. she never told me i had lupus or a heart murmur or any of the other things.
like the metal reactions with no hope of it stopping.

she just kept them from me. tried to make me have a good life.

ive spent the money and time at doctors and have just learned the things she knew.

ive learned with this fibro and the other 4 things i have. you must make time for you and the kids.
do it for them. do it for you. take the good days and make good memories from them.

i so want to have my mom here right now so i can lye my head next to hers and tell her thanks for showing me the things she could,
because i cant do those kinda things now.

know your not alone anymore. you a have a new family here if you want it.

it really is quality of life that maters.
 
Welcome ,it's so hard to lose someone ,I lost my brother ,but your mum is your mum. And I dread that day.
I have to take a bus train and taxi to get to my sons house so I'm planning to stay over at his next week for a night, nothing this illness throws at me will stop me being a mum.
Walkingbarefoot , you have found the place u need here, we will help u cry with u and most of all laugh with u. I'm the in house nutter.and cemetryme ain't far behind hehe.
Remember may you find wisdom and in wisdom may you find peace.
 
so nice to be noticed!
 
Hello cmetryme,

thank you for your note. I have a daughter, who I do as much as humanly possible with her when I have the energy. She lives with my exhusband and his GF, who is wonderful with my daughter and I appreciate her so much.

I wish with all my heart I could take my daughter on trips, my body just won't let me. Fibro stuck me down when my daughter was 2 years old. That was the last time I was ever able to pick her up in my arms. I learned that I had to drop down to her level and open my arms. I give her all the time I can and my love every moment of every day. She has a life challenge too. On top of my own struggles, I have advocated for this lovely gem and still do but on a lesser scale; she will be 22 shortly.

Your lucky to have had a mom like that. Very awesome. Mayo clinic, that blows my mind. I thought they were cutting edge. Hopefully things have changed over the years......

I embrace the idea of a loving 'family' of folks who "get" it - about who I am, disabilities and all. I appreciate very much your response. Blessings.
 
Hi forgetmenot,

Thank you as well for your reply. I am still confused as to how to get my replies right under the posts that were sent to me, be patient. As I told cmetryme, I have a daughter and she is the ONLY one who gets my time, even when I am running on fumes. I love her with every fiber of my being.
lol - so your in the house nutter? I am half English, raised in the states - but have UK pals, I think the "house nutter" is our way of saying "nut-house"? you gave me a smile. My challenge is my desire to get 'normals' to understand - what I call crash days. I am going through one now. Slam crashing. Had two busy days, and oh my GOD wiped me out, I am totaled, plus muscles hurting. I wish I could cry more, I need to its a release. I have a hard time crying. Sorry bout it taking a few days to reply, had a hard time finding this site again! What is the URL to this site? I finally saved it to a file for support groups.............. hope it took this time. thanks for your kind words, i truly needed them. Crash days are feeling like a useless blob day for me. :0)
 
cmetryme,

In reply to "nice to be noticed".........

I'm sorry? If I have a doctors apt day that is all I can handle, and I had trouble getting back to this site. cmetryme, I hope that wasn't sarcasm? I am as emotionally raw as rice-paper in the wind. I am sick, which means even my fingers and hands hurt. Sometimes it will take me a few days to get back to responses, and I am frustrated with things like how do I get my replies right under the posts sent to me. grrr. Here is the place I want calm, gentle understanding. :)
 
Walking barefoot , I think cmetryme was saying that to me sweetie.
I have bi polar and no how hard it is at the best of times not to get nasty or *****y when things hurt , or bust into tears .I'm on a merry go round atm.
Up and down all over the place.
Don't read to much into replays as words can be taken the wrong way.the last thing any of us wanna do in here is add to someone's pain.xxx
 
Walking barefoot , I think cmetryme was saying that to me sweetie.
I have bi polar and no how hard it is at the best of times not to get nasty or *****y when things hurt , or bust into tears .I'm on a merry go round atm.
Up and down all over the place.
Don't read to much into replays as words can be taken the wrong way.the last thing any of us wanna do in here is add to someone's pain.xxx


Hi, I wasn't being nasty, but your right - super sensitive. Now I understand. I am trying to delete it - can you help me by explaining how to delete a "reply" - when it comes to technology, it is not my strong point. thanks, WB
 
cmetryme,

In reply to "nice to be noticed".........

I'm sorry? If I have a doctors apt day that is all I can handle, and I had trouble getting back to this site. cmetryme, I hope that wasn't sarcasm? I am as emotionally raw as rice-paper in the wind. I am sick, which means even my fingers and hands hurt. Sometimes it will take me a few days to get back to responses, and I am frustrated with things like how do I get my replies right under the posts sent to me. grrr. Here is the place I want calm, gentle understanding. :)

Hey cmetryme - sorry about the above, I would delete it if I could, but don't know how. I misunderstood.
 
walking.

its all good! i really was just agreeing with forgetmenot that i am right behind her. and headed to the nut house.

you can read my post under chronic pain and see just where i am at. its a living hell right now for me. but im still here trying to help others.
this place really isnt about me. it about you. you have come for answers and support. thats why i do what i do.

i try not to go into what my daily life is because, i have 5 of the most painful things a person can have. i dont want to bring folks down on here.
i want to bring them up. they all know, just as i know you know im here if you need me.

today i received a call from my ace nurse with my insurance company. he wants me to check myself into the rehab. he now feels i am at a very dangerous stage. he no longer thinks i should be alone. so i refuse to go. if this morphine takes me then so be it. my pain will be over.
i really dont have anything to look forward to in the future as they took away my quality of life.

but thats ok with me. i will continue to help folks for as long as i can. pain or heart with knives for hours at a time. im here for all of you.


i want you to know its ok to vent here. i want you to vent here. it helps all of us here when you do.

please fell free to lash out at me if you need. i dont mind. i do understand and i really do care.

you cant delete a post im sorry.

i want you to know i am trying to help folks here. sometimes i have to be harsh. folks are hurting themselves and its not right.
they need to learn from our experiences that they are doing it and making things worse on themselves.

i hope to see many more posts from you.

have a better day tomorrow and enjoy every minute u can have with your gal.
if your going to over do it. over do it for her.
 
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