Fibromyalgia Community

Well you are full of great questions....

It is 15 years or better I think now and I am still fighting my limitations. Not accepting this as the way it will always be.

I am so much better. I used to tell everyone here " I will never take off my boxing gloves fighting this!"...but this year I said...
"I am begining to learn to "dance" with the dragon we have with us each day.

Calling this a dragon is about right, not too dramatic....mine is lavender in color and cartoonlike yet pointy teeth to bite in the morning. Every morning I awake with him at my side, sometimes really holding me captive and others....just rubbing upside me enough and I get coffee and my meds and sit here with you til the meds free my muscles.

The distraction of the computer added to my meds is my morning therapy. Then shower and stretch and off to work.

Acceptance may never come. Frustration and the making of my world different to accomodate this has been challenging. I have friends that say I use this to be homebound..... They are the ones not understanding...

I have a big problem with " the spirit is willing but the flesh is weak" I think of all kinds of things I want to do and I know I can't really get there.....yesterday was such a day. So beautiful out and leaf peeping up in the mountains was where hundreds of people were. I was up in the mountains in a car....I was dying to be out, BUT I knew I needed to be home and continue the things that I pace through over the weekend and the transition to fall. I had to bargain with the dragon for the day of events i did.

Life is a compromise now...or you can argue and then pay the piper after and it may go well.....but pay you must.

I had my GC over for Sunday dinner...a house full. I am hurting today again and it was worth it. Today I pace and plan and get the rest of my stuff ready for the week ahead.

"A Dance" it is a dance with this dragon and you need to learn the steps for you.

And you will...you are asking such great questions, you will figure you out quickly. Plus you found this site! I was deep into this by the time I found this page and made life long friends years ago.

Hugs from me, NancyB

Hi,
I am struggling badly with accepting my limitations. I am ( or was ) a ballet dancer and used to pushing my body and enduring pain for the payback of being able to dance. Now I struggle and push to keep going because I don't know how not to do it. I really understand the frustration. I think it takes time and I suppose we have to go through the grieving process, just like a bereavement.. It's certainly a challenge to accept what is now the new 'normal'
Hugs
Jillyx

NancyB,
what a wonderful quote.

A Dance" it is a dance with this dragon and you need to learn the steps for you.


I love this and am putting it on post it notes around my home and work.
Hugs
Jillyxx

Oh my goodness Booch007 you said that perfect,I love the way you described that drangon.That sounds just like me I have only danced with the dragon for four years know and im so tired of him.I have so many things in life i still want to do and having to pay the piper wasnt one of them but I will continue to pay him each day as Im not ready to let that dragon win.I thank god each day for meds or he would win.
soft hugs back at ya.
DEDRA W

I am right there with you all. Thanks so much for writing. It has been good to read that others are facing the same struggles as me - although i wouldnt wish this on anyone.

Hi.. This has been on my mind so much lately.. I have gone thru a bad time with all of my illnesses.. but especially my mental illnesses and they really screw up my acceptance and my ability to stay with in the positive in my life... And no matter how bad I get there is always some positive.. Somewhere... Sometimes it just takes longer to gather the strength to look for it and longer to open my eyes to see it...

I wake every morning barely moving and in so much pain I cry out just trying to move... Sometimes I am so into my Parkinson's Dance I have a hard time Dancing with the dragon... {I truly love that analogy...}

I was seen the other day by my counselor and I was in tears... It was one of the few times I was on a bipolar manic low and just couldn't stop crying... I couldn't stop thinking... I am so sick and tired of being sick and tired... There is too much pain to deal with anymore... I am tired of hearing are you alright and I understand... When I don't think anyone can truly understand what all this illness does to me... I was evil... Couldn't see any hope anymore... I was surprised I had the strength to reach out.. but I know suicidal feelings were right there within reach and I couldn't reach that far or I would have been truly lost...

I think I reached out here... Yeh this was the first place I came... Then the tears were flowing so bad I had to hide... I can't stand appearing weak and that is how I felt... I felt hopeless... But I made the rare phone call to my counselor and luckily she could see me...

First thing she asked was if I was crying because I was in pain... I told her I didn't know what hurt worse my physical pain which was unbearable... Or my spiritual/mental illness pain I couldn't explain to her for it hurt so bad... I told her I just wanted to give up and not feel anymore... I wasn't suicidal yet but it was close...

I had lost the hope not that things would get better for there isn't much hope for that in my situation.. But the hope to find me in all the mess again... I needed to know I still existed in all this... and I was so depressed I couldn't...

I live to accept myself first and then the life I have been given... When my mental illness, or sometimes just a few bad pain days... Or talking to the Dr's that tell me I am doing all we can do... It is wait and see now... When this steps in my way... I lose some strength to go on... to face each moment as I should,.. To accept me... and love me beyond my FM... my RSD... my MS... my Parkinson's.. my Mental illnesses..

I don't have days I can get up and TRY to accept me and my life... I have to DO IT... Every day... day after day... MOMENT BY MOMENT...

No it isn't easy... I had dreams... But I can still have dreams... So I don't own a big business and I'm not making lots of money... Today I think I can dream a bigger dream... I can take all this evil inside me and turn it into good... I can reach out and help others... I can accept others better now then I did before I became ill... Even those who don't believe in me... And yes there are plenty of those...

And first and foremost... I can find acceptance and love in my heart for myself and others that took so very long to become real to me... Moment by moment... day by day... My life is mine again today... not like a few days ago when I couldn't stop crying...

YOU are YOU... dig deep and accept and love you for who you are... Take the pain and disappointments moment by moment... Look for the hope and goodness that is still there in your life... Acceptance is easier with my Lord... And He walks closer to me daily...

Love... Jan/Dakota

Hi Jan,

That's interesting the phrase, "Dancing with the dragon".

I live with chronic pain from spinal cord injury.

I used to say that this was, "dancing with the devil".

My bf corrected me saying,

"You're not dancing with the devil; the devil is dancing with you".

I am so sorry that you're having such a tough time right now.

Never lose hope.

xoxo,

Bet

the Dancing with the Dragon phrase came from our dear NancyB... up above... I find it very fitting too... Nancy is so cool at explaining things... Her analogies are great... I think I got that right lol... {analogies right lol... I wasn't number one in English... I could write up a storm if I could use my own style but tell me I had to use a preposition and I flunked lol....}

Just didn't want to take credit for someone elses great idea lol...

Have a great day... Love... Jan/Dakota

Wow...accepting my limitations...now there is a goal for me. I have been fighting this for so long...my husband is the one who has to restrict me as to what I am"allowed" to do. I am only "allowed " to do 10 minutes of housework per day. I am NOT "Allowed" to shower when he isn't home..(.I have fallen several times and our nearest neighbor is more than 2 miles away and he works 1 1/2 hours away) I am "allowed" to go to the mall, either with him or friends...IF I promise to use my Handicapped Placard, and rest every 10 minutes....the list goes on and on. He is not trying to take the fun or joy from my life...and he is not trying to boss me or be restrictive...he is just trying to help with my flare ups. I swear...sometimes he knows my body better than I do. He can walk in the house after work, take one look at my eyes and know I have overdone. I have issues with setting my own restrictions..so he has finally taken over:)

Most people will see me as complaining about this, but truly I am not. We have been together 20 yrs, and married for 17. This man has seen me through health issues and personal issues that would send a less strong man running the opposite direction before you can say boo. I am thankful to have him in my life...and in a lot of ways, the restrictions he has given me help more than they annoy me ( except the one with the shower...but I do understand his reasoning)

I know what you mean about always feeling sunburned. I don't get sun burn. Never had it before. I am African-American. Everything hurts that touch me, or when I touch it. My clothes and even the shower hurts!
I am thankful God had given me the courage to press on. This whole fibro thing hurt relationships. Don't know about mine anymore. The other half have been through a lot with me.

I am a totaly different person. I feel like I pretend to be ok, when I'm not even with medication. The rest of the time I am in terrible pain. Can't even think sometimes. Just in a fog. Try to shake it off. So, I feel you. Yes it does make you angry. Especially when you don't have anyone to talk to. Don't have any friends outside of work. Don't like to make plans because I never know how I'm going to feel. Hang in there. That's all I know to say. Don't have an answer.

God Bless