Confessions of a girl getting better

Discussion in 'Fibromyalgia Main Forum' started by ldbgcoleman, Sep 30, 2005.

  1. ldbgcoleman

    ldbgcoleman New Member

    Ok I am not whining! I feel so lucky to be able to afford treatment and to get better! But did you know getting better has been a struggle? I know that sounds like the skinny girl complaining about needing to lose 5 lbs but really I am struggleing.

    I confess I just want to be normal! I want to live one week as a normal girl again. No Heperin shots, No hand full of pills, No pacing and resting, no restrictive diets. Just normal. One part of me knows I have to stick to my regime until the DR gives me an all clear and that I will be on maintenance for the rest of my life, but there is a sneaky little voice in my head that says hey you're good enough now just eat the cheesecake and skip the shots no harm, no foul.

    I suppose I am struggleing against this voice. It may sound silly to you. I did so well for so long with the diet and faithfully taking the meds etc.. I am getting greedy and I want to Live life again. I don't want to be different and a sick girl anymore. I don't want the first thing out of everyones mouth when they see me to be "Do you feel OK?" I really just want this whole thing to go away. Don't we all? I guess that won't happen and I have to get my head in the right place and count my blessing as they come.

    Thanks for being there and listening. This is the only place I know someone will understand. When I tried to talk about this with my husband who has been very supportive I just get the typical male blank stare. Love to you all.

  2. hopeful4

    hopeful4 New Member

    IS TOTALLY NORMAL! What is the alternative to wanting to be normal? Staying ill? Every now and then we're entitled to wishing it would all go away, and fast, and leave us vibrant and healthy. I totally agree, it is a struggle.

    It is my custom to use affirmations. I find that they help me to focus on WHAT I WANT in a positive way, and they help me to let the negativity or whining fall away. I'll share one with you, see if it fits, or make up your own.


    I write my affirmations on a card or post-it, place on my mirror or nightstand, and say out-loud or in my mind 3 repititions, 3 times/day...or however you can fit it in.

    You are on the right track, you are just hitting some bumps in the road.

    Best wishes always.
  3. onedaymagpie

    onedaymagpie New Member

    Just to be normal. Nothing extra, just normal. It would be so wonderful. I know what you mean. And sometimes as I think of others who do not have this dd, I think how great it must be to have "normal" energy. To be able to push yourself when you want as much as you want and not pay for it like we do. To be able to know that each day, you will feel okay to do whatever you feel like doing.

    I think what you're describing is a really normal reaction to this dd that a lot of us go through. Even though I have had this dd for most of my adult life, I still have this feeling somewhere inside me that "one day" I will be all better. I guess it is a struggle with some kind of denial, so I remind myself that I must be realistic and do the most with what I can.

    And I think about others who have even bigger challenges than we face and how they bravely face and address those challenges, like Christopher Reeves was a true inspiration. Like you said, count my blessings.

    I am in about month 3-4 of FFC treatment and have been on the Hyperion for about 5 weeks and am still struggling with that; feeling pretty lousy. Your posts have given me such hope and motivation going forward, I can't even tell you. I am grateful to you for sharing your success (as well as that it gets worse before it gets better).

    Anyway, maybe one way to handle it is to think about it as a day at a time thing, instead of thinking of the maintenance diet being "forever." And just maybe "one day" the cure will be found!

    Here's to a CURE for all of us!!

    Big hugs, Maggy
  4. onedaymagpie

    onedaymagpie New Member

    I loved your reply! You said it just right.
  5. Sheila1366

    Sheila1366 New Member

    I love the way you put that.I can relate to you and how you feel.Many of us can.I am so glad you are getting better.

    I just was reading your bio.I love to make things for my house and garden.I am working on something right now.Luckily we have a workshop and I was able to cut out something I am gonna paint and put up in my kitchen.I have also painted chairs and have painted some wooden handles on brooms and sold a few.

    Can you tell me about this fibro.specialist you go to?There is one here where I live.But I am a bit nervous going to him.He treats fibro. with vitamins and supplements and he is a chiropracter and does adjusments every week on you.Is this the same thing you are going to?

    Take care and enjoy your healing.It is well deserved.
  6. Mareeok

    Mareeok New Member

    wonderful goal filled with hope. I hope you get better soon. Attitude is a big asset for people who are struggling with something hugs and you have a great attitude.

    Enjoy each good day for all it's worth,
  7. elsa

    elsa New Member

    Dear Lynn,

    Just last night I said something very similar to my husband. (I too have been steadily improving since last June and I am BLESSED as well to have the resources to pay for my treatment plan.)

    However, I just stood there out on our deck thinking. I finally said to my husband I'm having a hard time wrapping my mind around the fact that I'll probably always have to take my bedtime medication and daytime sleepiness meds due to my FM sleep disorder.

    I didn't say "I wish I was normal", but it was hovering in the background.

    My improvement is so remarkable vs a year ago. I have a very physical job, but it is the daily activities that remind me how lucky I am.

    I go out to the farm and groom and spend time with my horse(s). It's hard to describe how aerobic and physical the act of currying, brushing, body clipping, bathing, etc of caring for them is.

    I'm in the process of de-rusting my deck furniture and re-painting. I found a old (30yrs?) 5ft tall wooden step ladder that I am stripping and painting to use as a stand for potted fall plants.

    I have sanded my front porch swing .. prepping it for re-painting.

    I drove myself (about 7 hours) to Dallas last Sunday afternoon for an integrated, anti-aging endocrine doctor appointment on Monday morning, with the return drive Tuesday.

    This is what I have done just this week ... not as a summer long project.

    I still have pain issues and fatigue to deal with. My arms are very sore from wisking away grey horse hair from a polartec horse blanket. (Not a quick and easy job .. trust me on this! LOL)

    I have pain everyday. As I write this, I have rubbed a stick of icy-hot down both upper arms to forearms and put on a heavy sweat jacket to warm up these muscles prior to a hot shower.

    It sounds like I am nothing but an ingrate ... whinning about how bad I have it when others can't get out of bed. I've been there. I'm better now ... but not there yet.

    I still ride my horse ... but I haven't "trained" in over a year and I haven't been in the show ring in two years. I realize I will never be able to do the large number of shows that I competed in prior to FM, but my goal is to participate in a select few of them.

    It is not an unrealistic goal. I'll get there. But, I will always be on my maintainance drugs/supplements/amino acids/bio-ID hormones. I'll have a very good life, but it won't be "me" ...

    My husband agreed with that last statement. But in his wonderful way he pointed out that I will be the "new" me. So what if I have to follow a protocol of maintainance? I will have a good quality of life, doing the things that I love doing .. (even if it is on a scaled down version) and getting on with the business of living.

    He then promised me that he loved even more the "new" me because it took guts and determination to wade through an illness that is not on the tops of many health professional's list.

    Thank you Lynn for being brave enough to post this topic in the first place. I don't want to offend others by my whinning. I thank God everyday for my blessings and good fortune. I just miss the old me while I am getting acquainted with the new me.

    Take care,

  8. Mikie

    Mikie Moderator

    Some of us, probably most of us, will always have to be careful. I am better than I was five years ago but I am not well. Progress is maddeningly slow, but progress is better than relapse. I am in the process of coming back following a relapse and now I have a virus. It seems like we can never let our guard down.

    I do think we can come very close to living a "normal" life as long as we don't try to burn the candle at both ends like most of us did prior to becoming sick.

    I think it's easier for us if we look at wellness as a process rather than a goal. We may never reach the ideal goal we set for ourselves but if we set small benchmarks along the way, eventually we can see progress. Normally, I think goals are a good idea, but we have to temper them with reality and we have to be flexible. If all we have is one big goal, when we have relapses, and most of us have them, we will become frustrated and discouraged.

    This is what has worked for me but it may not apply to everyone. I used to do corporate planning where goals were set and we figured out the steps required to achieving those goals. I still like using this model but now, I concentrate more on the little steps instead of the big prize at the end. If I look back five years, I can see how far I've come and I know I'm on the right track with my treatments. If I had expected to be well by now, I would be very disappointed. In corporate planning, there is always a time line. Because our illnesses can wax and wane and be unpredictible, I've just thrown the time line ot the window.

    Love, Mikie
  9. ldbgcoleman

    ldbgcoleman New Member

    Thank you guys so much for the wonderful responses. A timeline is a great way to look at the whole thing A Process with a goal. I am excited about getting better but a little apprehensive too!

    Sheila- I go to ther FFC in Atlanta. They do extensive testing and determine the underlying causes of your illness and treat those but the also treat the symptoms. It takes time and it is not cheap. I am happy to answer any questions about it lots of people post their experiences at different FFC's.

    Elsa- Girl you will never believe this but I haven't ridden in 5 years and last week I took a lesson to tentatively get back into it. We are in the beggining stages of building a house on 15 acres and I am very much hoping to have a horse again. I was so sore. I groomed and saddled the horse and took and hour lesson. It was so much fun and the sore is muscle sore not fibro sore. I am riding hunt seat but just for fun not really competing.

    You are right currying and grooming is a workout! He was 16.3 so I had to reach. He was gorgeous and I have never ridden a horse like this. A haveliner brought over from Germany. WOW. Way out of my league but he was a good boy and put up with me. So responsive really a dream to ride. I would love to hear about your farm!! Please tell me more. L

    Mikie- as always you are an inspiration. I have felt so much better about my treatment because you have been through so much of what I am doing. It has helped verify what I am doing.

    Maree- You are so right Attitude has so much to do with it!

    HAnginginthere- I might just have to have that peice fo cheesecake with strawberrys of course!

    Hopeful a daily affirmation is great I have one but I forget to use it all the time. "One step at a time just keep moving" has gotten me through alot but I have to be reminded!

    Maggie I am so happy you found the ffc and are getting better. You are so right you don't have to look far to see someone worse off than you are! Thats why I have such a hard time complaining at all because I do feel lucky!

    Dancinfingers- What can I say I am the turtle! Thank you so much for reminding me! I can be quite happy being a turtle. I do have a strong shell to protect me!

    Love you guys to pieces. Lynn

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