TO ANYONE CURIOUS == Where I Get My Strength & Will Power From

Discussion in 'Fibromyalgia Main Forum' started by S-Elaine, Mar 23, 2009.

  1. S-Elaine

    S-Elaine Member

    To anybody new at the Message Board, I am reposting information that I hope could be helpful.

    I will add the 2nd part of my background story with Fibromyalgia, Chronic Fatigue, and my struggle with Severe Depression at the time.

    This is my real life story about my Father who was MY TEACHER, and I became his STUDENT.

    He never told me at the time he “enrolled me in a course” and it was to teach me how to live with my medical conditions and to develop coping skills.

    I will always be grateful to him for the information he so generously shared with me.

    Take care,


    I got my strength (mentally and physically) from my Father. He had Parkinson's for 19 years & RA for 29 years.

    Strange thing is when I got really sick, was severely depressed and bedridden ---- my Dad was the ONLY person I responded to. (I stopped talking, stopped caring and gave up.)

    My father was persistent and was not about to let me continue like that. He would get in his wheelchair every day and come into my bedroom to talk to me. I finally responded to him when he said ..... "We walk in similar shoes, so I understand how you feel." (He meant we both have illnesses. They have different names, but they affect us in similar ways.)

    That caught my attention, and I finally spoke to him. He phrased things for me in a way that made me think.


    == Do you want to spend the rest of your life being miserable ..... OR do you want to learn how to accept it and deal with it? You can move forward and create a happy life for yourself.

    == The word "disabled" does NOT mean you can no longer do things. It just means you have to learn how to do things differently.

    == You can be as mad as you want for as long as you want. It's up to you, but that attitude will get you no where.

    == Are you planning on never even trying to walk again?

    == Be proud of who you are. Don't feel sorry for yourself. Hold your head up high.

    = Allow yourself to grieve periodically. It's natural and you will need to. The rule is to not let those negative feelings linger more than 1 day. When you go to bed...hope that tomorrow will be a better day.

    == Do not let this illness become your whole entire life. Learn how to incorporate it INTO your life. You can have a life outside of this illness.

    I'll never forget the day he convinced me I could get out of bed. He told me to be very careful, sit on the side of the bed, and slowly lower myself to the floor. I did then I looked at him and said .... "now what???"

    He said ..... "see if you can crawl to the doorway." I did and when I got their I smiled. My Dad then said ..... "the bathroom is on your right and if you go down the hallway, you will get to the kitchen."

    He was so nonchalant about it, making it sound like it was so easy to do.

    It gave me hope just to know, I could get out of bed and crawl to another room ALL by myself!!

    I crawled until my legs got strong enough to use a walker. With my walker, my Dad and I used to race in the back yard. He had to put his electric wheelchair on SLOW to make our races fair. Eventually, I no longer needed the walker.

    Staying connected to my friends and socializing makes me feel like my world is not so different. I'm doing what I love. Enjoying life and living it to its fullest!!

    My inspiration is my Father. That's PART 1 of my background story.

    Wishing ALL of you well. Take care,
    == Elaine
    [This Message was Edited on 03/23/2009]
  2. S-Elaine

    S-Elaine Member

    MORE++ Inspirational Words of Encouragement / Part 2

    As I posted before, this advice and guidance my Father gave me helped in changing my life, my perspective & outlook.

    I put his words in quotes (“.....”), because these are HIS words, not mine. I’m just passing them along hoping they may help others.


    == “On the days when you are in pain, acknowledge it is going to be a tough day & take it easy. Still get some things done. Small things and rest in between. This will give you a sense of accomplishment that you can still be productive even on the days when you are not feeling well.”

    == “Do not be angry because you have to use a walker at such a young age. Look at it as a means of transportation. The walker will help you get to where you need to go when ever you want. And, maybe some day you will no longer need the walker. I did not care so much for my own wheel chair at first. When I realized where it could take me, then I liked it.”

    == “You have tried to take your life 2 times, and you managed to survive. Do you now realize it is not your time to go yet? You have a future ahead of you and most importantly, you have a life to live. Please do not forget about that.”

    == “Always remember where you once were, so you can be proud of where you are at now. Never forget about the bad condition you were in before. That will always help remind you of how hard you worked.”

    == “Do not be ashamed of your illness. In what others see as our greatest weaknesses, God perceives as our greatest strengths. We are still useful. We can still do things and contribute. Perhaps we might have to learn how to contribute in a different way though.”

    == “When a doctor tells you that you can no longer do things, take what they say into serious consideration. Test yourself to see if the doctor is right or wrong. Make sure you are very careful when you do this. Sometimes the doctors will be right & sometimes they might be wrong. Remember your doctors were wrong about you never walking again because look at you now.”

    = “Try not to get overly frustrated if you are unable to do something on a particular day. Just because you are not able to do it today, does not mean that you will not be able to do it tomorrow, or the next day. Eventually, you will be able to do it.”

    == “I am teaching you about all of these tools that you will need to use for the rest of your life. That is what happens when you have a medical condition. Look at these TOOLS as GIFTS. They were given to me, and now I am giving them to you. When you learn how to successfully use them and no longer need them, give them away to others. Keeping them and not sharing would be selfish. Some people may want them, and some may not. Always be VERY respectful of their decision.”

    My Father was my teacher. He took it upon himself to personally show me with an illness you can still have a happy, full, and rewarding life. He was a very happy man, and he had Parkinson’s for 19 years along with Rheumatoid Arthritis for 29 years.

    (Believe it or not, he considered himself a lucky person!) That always amazed me!!!

    My hope is that others can possibly benefit in some way from these words. Wishing everyone the very best.

    Take care,
    Elaine[This Message was Edited on 03/24/2009]
  3. Debra49659

    Debra49659 New Member

    I plan to read this very carefully....seems your father shared with you very wise information and I intend to take it to heart:)

    Thank You for sharing
  4. AuntTammie

    AuntTammie New Member

    for sharing this....he gave you a lot of really good advice and it's wonderful that you are passing it on
  5. kat0465

    kat0465 New Member

    i read your post after crying my eyes out because i am just so tired!!!! tired of the pain, Isolation, being misunderstood,loss of self,sick of pills(that don't work) and Dr's( that don't work either) geez i could go on and on.

    it sure made me appreciate that i can still walk without assistance, feed myself, have some pain relief,and sometimes even have a ok day. lost of people dont have any of these, I'm Blessed and didn't even realize it.
    thanks, Kat ;)
  6. rockgor

    rockgor Well-Known Member

    How lucky you were to have such a wonderful father. Mine generally never spoke to his
    four kids unless it was to bark an order. "Take out the Trash. Change the channel. Bring me
    a beer."

    Our 9th grade English book had two essays on wheelchairs. One gal wrote about this
    prison that kept her from going anywhere, ever having any fun, etc. Another writer spoke of
    her chariot that let her go places she couldn't go otherwise.

    When I was visiting a nursing home I met lady about 90. She referred to her wheelchair
    as "my Cadillac".

    I'm sure your dad would be pleased and proud to know you are sharing his words of encouragement
    and wisdom.

  7. ikathy

    ikathy New Member

    I was really moved by your father's advice to you. It is really very easy to let this illness consume a person, but only you can allow it. Your father truly had a wonderful outlook and attitude. I wish I could have had a father like yours.

  8. S-Elaine

    S-Elaine Member

    Thanks to everyone for such nice compliments regarding my Father.

    Yes, I do understand I was lucky to have him.

    Honestly, it if wasn’t for my Father continually talking to me every day the way he did, I probably would never have even tried to get out of bed any more. Sad to say, yet true.

    I was on a very bad road, making poor choices & needed to be stopped.

    Keep in mind that was me approximately 9 years ago, and I never knew things would turn around for me and I would improve health-wise. I even went into a 2 and ½ year FULL REMISSION of all symptoms. I’ve been at the ProHealth Message Boards since mid 2005.

    My Father saw me 100% healthy before he passed away, and I am sure that gave him some “peace of mind”. I was able to help care for him in the same way he did for me.

    While I know what my Father taught me is helpful to some, I do realize it is not for all and I am respectful towards that.

    For me personally, my Dad was right about a lot of things. I just did not know back then. Doctors kept telling me I would never get better, I would never walk again & I should just GET USE to it.

    What kind of hope do they think they were offering me, by saying that???

    Again, luckily my Father did not believe what the doctors were telling me and I can walk, hop, skip, jump & RUN if need be.

    Of course with many of my prior treating physicians I went back to pay them a VISIT so they could see BEFORE THEIR OWN EYES, I could walk and did improve.

    ALSO, I wanted to make sure they all knew what happened to me & to let them know, if a person is speaking about “severe depression & being at risk” ( --- careful with wording due to the Message Board) ===== they MUST take that patient seriously.

    It is not a joke. Two of my doctors came to see me in the Hospital. One came while I was still unconscious. I had been out for about 2 days. Another one came to see me while I was at my “Inpatient Treatment Program”.

    He wanted to know WHY and exactly what did I do. Tears rolled down his eyes as he listened to me. He kept blinking trying to make himself stop crying because he did not want me to stop with telling him all of the details.

    While I was in the 2nd Hospital Treatment Program, the doctor in charge of my case contacted ALL of my previous doctors to confirm === “Yes they all did give me the medication and I was taking it as prescribed. They also did confirm I kept a LIST of all medication I was on along with medications no longer taking, but listed them as tried.”

    She found out they never really bothered to look at that LIST I gave them every single time I went in for an office visit. The list was updated at least once a month too.

    The moral of my story is ------ we never know what the future will bring us.

    I certainly never expected a 2 and 1/2 year of a FULL REMISSION. When my symptoms returned the 2nd time, I was much better prepared.

    I am grateful I did not get what I wanted all of those years ago. I would have missed out on so much in life. I am grateful to be here, Grateful my Father taught me so much and I am living a happy life.

    What more could I ask for????? Nothing, as I have been given so much. Those are the things I focus on when I have difficult days and am not feeling well for an extended period of time.

    Take care,
    == Elaine[This Message was Edited on 03/26/2009]
  9. S-Elaine

    S-Elaine Member

  10. lucy2create

    lucy2create New Member

    All my life I was always told what I couldn't do. I had very little encouragement. When I did do well, I didn't get to celebrate a victory. I was told just see if you can do it again, as if I had a bit Of luck but probably would fail the next time I tried.

    Parents it is so important to celebrate even the smallest victory. I believe with encouragement I could have suceeded in so much more.

    I wish I had a Dad like yours too. He was a wonderful person and just look what a wonderful daughter you became.Thanks for letting him be a little bit ours by shareing this story.

  11. S-Elaine

    S-Elaine Member

    Hi all,

    It has been a year searching for answers why I am having “burning pain” in the soles of my feet and at times in my legs.

    Previously, I had a rather “full life” despite my Medical Conditions of FMS and CFS.

    Now my world is tiny. The burning pain in my feet rules my days & I am “rebuilding” my life …. looking forward to having my EMG testing done by a Neurologist in 3 to 4 more weeks.

    I’ve had to drastically adjust how I live my life. Yes, I am Disabled and I am perfectly fine with living a “disabled life” for now ….. until I recover.

    I manage every aspect of my medical care, tasks & have had to come up with other solutions of getting things done while I am not able to do some or many of them myself.

    It was hard giving up my daily exercising, yet I know I will get back to that in due time.

    I’ve been through so many “struggling times” where I am “accustomed” to living like this. It is familiar to me.

    My life continually changes as Medical issues come up & I know I have the inner strength to make it through all of these challenges.

    == Chemo for Cervical Cancer was hard & I tried to make the best of it.

    == The ups and downs of “Major Depressive Disorder” throughout the years was a “monster” or “beast” at times & I found my way through with the proper Treatment as well as Medication to manage it.

    == All of the serious Digestive Issues which landed me in the ER room 5 days in a row & then finally Hospitalization. That time was very, very hard because it took about 1 full year to finally get Doctors to find out what was wrong & how to get my body to function as is normally should.

    == Now it is my feet & with very limited use of them ….. it is “back to the basics for me”!

    I could have become Severely Depressed over this down fall. I could have chosen to give up.

    No, fight, fight, fight for your health & always know “improvement” is possible.

    I place a great deal of emphasis on searching for the right Doctor, the right Treatment, the right Medication, Alternative Care & anything else needed to improve your health.

    We all can get better. I know that because I distinctly can still remember what my Father taught me so many years ago.

    I will physically be able to do more in time. I have a new Diagnosis of …… Lumbar Radiculopathy now and I am waiting on additional testing.

    Many of you may not even remember me here at the Message Board. I’ve been away for quite some time. It feels like years. I enjoyed my time on the “Chit Chat” Board when I was always interacting with anyone who was on the “PORCH”.

    However, I wanted to share with all of you, (what I personally feel) …… are “words of wisdom” my Father passed along to me.

    If by “bumping” this post up is helpful to anyone in any way ----- I’d be glad.

    For those who just do not care for it, feel free to discontinue reading and move along to a different post that captures your attention more.

    == Elaine
  12. nleer

    nleer Member

    Thanks Elaine!!
    Sharing this has given ME new hope. I have become beridden and most is depression, fatigue and pain. I have other ailments as well, but the words of your father is something I would like to take with me and try to live by a day at a time!! Thank you for sharing this with us, without it I may not have thought anyone would ever care about me. I don't get much help here at home. So I struggle on a daily basis. These are words to live by and I will do my best to be my best each and every day.
  13. clementyne

    clementyne New Member

    What a lovely man your father was! You are so lucky to have had him to guide & teach you.

    I hope we can all remember that despite our issues with this DD, we CAN live lives that are worthwhile & gratifying.