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Randm2220 posted:
Hello everyone,

I am new to this site, but not to fibro.

Fibro has taken my life. I still get angry about it. It has cost me my job, which I loved, and my active lifestyle. I was dx'd over 2 years ago. A month ago I was let go from my job. I have filed for ssd and that long wait has began.

My kids are grown and out on their own mostly. I still have 1 in college. My husband loves that I am home. I feel I should keep the house up, cook dinner, do the Laundry, yard work..... Ect, but sometimes I just can't. Vacuuming is very difficult as well as mowing. My husband doesn't let me do either of those thing. He is amazing! He understands and takes excellent care of me but still the guilt remains.

I am seeing a counselor and being treated for depression. My meds are lyrica, trazadone and Tylenol 3 for the pain. Oh yeah, celexa for my head. My counselor believes I have PTSD due to childhood issues and a long term illness that my husband has. Coping with all this has been difficult.

Well, there is my brief history and introduction. Lol
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booch007 responded:
Oh so welcome you are. Sorry you needed to find us, but such a fmily you'll never find somewhere else!

Over 15 years I have been followed by our dragon. He is with us always. In the begining the guilt of not being able to do what I did before was so overwhelming. I also have a great DH. He got me a house helper. She was coming once a month for 100.00 and then over the years it was twice a month. She does all the things i can't (or shoudn't)....my floors, the bathrooms etc. The first time she came i had cleaned before her (often did that) but I sat on the steps and cried so hard.

She sat with her arm around me and said...."People are so happy to have me, what is wrong?" I said those people want you....I NEED YOU. There is a difference, I have to say "I can't" to myself. It took time but you do change your perspective on life.

You downsize, sharpen your skills on the things you can do and find joy in the little world you make.

I am so glad you found the board, it took me forever to find my way here and when I did, the seniors that used to be here helped me fine tune the tools I already had figured out....but they brought me to an even better place.

So, on that note i will ask you to look in the resource section and read the thread on "Members Toolbox" I created it years ago to help a newbie get as much from us immediately, so many come and go eachday and to repeat the same stuff is not so easy over the years so here is a place to get the help we all do to survive.

As you learn the tricks and get your head in the right place a wellness window of a few hours (mine is about 10 hours now) this is where the dragon(FM) is to the back and at a lower intensity to have a life. Please hydrate right and stretch eachday. I will never take off my boxing gloves to fight this, but in saying that I think my high functioning state is due to just that.

In a flare I give in for one to two days and then up and OUT...get distracted and moving. I have learned to push through tthe pain can help at times, but then I can be back to the couch if the body says no.....you learn alot about YOU.

So, again welcome and stay, post your needs, thoughts, jokes, lean in for a hug...throw in a shoulder to another. IT is a very functional place. Take care, Nancy B
 
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Randm2220 replied to booch007's response:
Thanks nancy!

I too find things to keep my mind off the beast. I love to garden, sew and do crafts. They help a lot!

The mornings are the worst. I wake up in so much pain. It takes a few hours for it subside. I do stretch, play mind games and keep busy. I do give in, like you, when a flare hits. Mid-morning I feel pretty good and often think I can work and bring income into the house. Then early afternoon my mind changes as the pain increase. Does anyone have that? It really frustrates me. I often think of my old life and how I miss it. I guess I am just still angry.
 
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booch007 replied to Randm2220's response:
That is my life. I say I get younger by 11a.m, I am at my youngest and then by 3pm...slidiing back to the 90 y/o who woke up this morning.

I started taking my muscle relaxant at night to help with the mornings. (notice if you nap...you go back to square one?)

The I took it mid day to help with the old lady returning. I also take Ultracet with it. It helps the drift...but I slow down with my body.

I am an animal though during the Wellness window!

I have always remembered to have my water bottle with my to hydrate my muscles and body mechanics to keep my "arms home"...(close to the body) I love doing all that i still can, I just have to always think of how to approach it now.

So, nice to meet you and glad you found us! Nancy B
 
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Randm2220 replied to booch007's response:
Nancy,

Glad I am not the only one who begins to feel crappy in the afternoons. I take a muscle relaxer in the early evening to help with the discomfort and to begin to relax me before taking my sleep medicine.

Today is a bad day. It is rainy out and I have already taken a pain pill. I took it at 9 am. I don't usually have to take any until late afternoon. I think it will be movie day for me and hubby! I made some homemade Mac and cheese for later. (I forgot say I love to cook). Managed to get the floors swept too. Hubby did the vacuuming.

Thanks for support!
 
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greenwitch68 responded:
Hi and welcome-
I myself am fairly new here and believe me, you have found a great spot to be.
I ,like you, struggle with feeling guilty about not doing more. And usually this just gets me into trouble, I over do it and then pay for it the next day. It even causes problems between my DH and I.
He gets ticked when I won't slow down or accept his help.
I'm trying to learn how to pace myself and to accept my family's help.

This site is sure helping and the support of everyone is amazing.
I'm glad you found it.
Feel better and have a great day.
Kath G.
 
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xperky replied to Randm2220's response:
My days are like that too. Getting up is awfully difficult with the stiffness, pain and grogginess. I stretch in bed, hobble to the coffee pot, take a Tramadol and my body starts to wake up. I'm able to accomplish quite a bit after an hour or two. Then, after my 4-5-hour window of wellness the pain returns, sometimes with nausea. After that I have to either rest or push too much and risk a flare.

Anyway, welcome to the site, Randm. I share many of your likes in activities. We had homemade mac and cheese today too. My DH made it and put it in his smoker with baked beans, ribs, chicken and brats. Not much cooking needed for a while now!
With Compassion,
Margaret
 
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booch007 replied to greenwitch68's response:
Man I hear you on the DH thing.....

I would try to do and try to do and then ***IN MY frustration I would bark at DH and he would be like "what did I do??"

Needed a sit down, just to say it was me being frustrated that i HAD to ask for help.....we have come a good distance since then. I really have learned me more then ever. This is really a gift os introspection*.

Having to learn about yourself and the letting go of the STRONG independent person we were. . It is sad, but doable.

Good communication between you and the spouse....

P R I C E L E S S.....

Good luck and glad yoou both found us!...Nancy B
 
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newgrandma1953 responded:
Hi,
I feel for you and truly understand. I too lost my job due to Fibro and required counseling for depression. You and I have other things in common.
I have found it adventagious to take my life one day at a time. I have learned that as challenging as this disease is...each day can still give blessing. I clean the house a little each day depending how I feel.
If I feel up to cooking I do, if not we either eat out, or eat dinners from the freezer.
You may want to re-think about what you're demanding of yourself on a daily basis. You have such an amazing husband so take your blessing (him) and relish in it. Not everyone has that support.
The dust won't run away and niether will the grass.
Life is so very short, and will always have it's challenges, especially with Fibro so be compassionate with yourself.
My faith has been my saving grace. Coping with this disease is challenging but duable! Individually it's real tough however with family, friends, and each other we will manage it.

my love and prayers to you,
Carol
 
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Randm2220 replied to newgrandma1953's response:
Wow! Thanks everyone! I have yet to be on a site that has this kind of support. I really appreciate all the responses. I feel connected.

I do pretty good after being up for a few hours. I feel I can beat this thing. Then the pain tells me otherwise. It is an emotional roller coaster. My husband works night and when he leaves, that lets my mind wander. My mind gets me in trouble. I have to learn to control it. I usually end up feeling worthless. I have a counselor that I see once a month and she is amazing! I always feel so much better after talking to her. She has fibro too so she can really relate.

The past few days have been tough. The weather has been rainy so pain increased. Been a bit of a couch potato. I take Tylenol 3 for the pain when needed. It dulls the pain but nothing I have taken gets rid of the pain.

It is so good to hear that others share the same problems as me. As far as how the day goes. I thought maybe it was just me after talking in another support group.

Anyway, thank you so much for the warm welcome! I am looking forward to getting to know everyone.
 
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dollbug responded:
Hello and welcome....MiMi in NC....sorry that you are also dealing with the wrath of the dragon, aka FM...it can be a vicious cycle...and it does take a trial and error process to figure out what the body needs to cope better...this is not an easy task to do either...I am one of the FMers here who tried different medicines but did not find any to really help without causing side effects...a lot of medicines will do this...eventually I did my own research and tried different vitamins and supplements and finally found which ones really helped me...

I would encourage you to be sure and ask your doctor to check your Vitamin D level...which is so important for a lot of people these days...low Vitamin D can cause additional pan and it can also affect other illnesses as well...and if you level is low...this is a very cheap fix....

I am glad that you have your DH (dear husband) on your side....as there are so many who do not understand what we are dealing with and just how challenging it can be...and unpredictable also...we never know from time to time just how we are going to feel...I still do not understand this...as there are times when I have not done anything to provoke the wrath of the dragon...it happens out of the blue..when I least expect it to surface...

The more you learn about it...the better you will learn how to cope with it...

A lot of us FMers also have multiple health issues..I know that I did in the beginning....I have had several surgeries in the past few years getting to the root of other issues which did make a BIG difference in how I felt...and my doctor thought that I was just depressed...

I have learned a lot from my experience with trying to deal with this mean and ugly illness...

I am sure you will find some good "tools and tips" here that perhaps you have not thought of...taking a hot shower at night using lavender bath salts is a good way to help my body to relax so that I can sleep better...Sleep is so important for us FMers...

Drinking plenty of water each day and watching what I eat is also important...doing gentle stretches and exercises is also a must...so that the body does not stiffen...

Using a heating pad (moist heat) is good for me...and also using Stopain Spray is a good tool for me...(you can get this at Walmart)...

Learning how to pace, pace and pace even more is a valuable tool also....do not overdo...as you will surely pay for it...one of our members here use to say...use the 15/15 rule....work for 15 minutes and rest for 15 minutes...learn how to pace and pace and pace...

Everything is a process....and yes...it does take time to figure out all of this...so hang in there with us...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Randm2220 replied to dollbug's response:
Mimi,

Thank you for your response. Learning to pace myself has been the hardest. Having been released from my job in late march, I am figuring out that if I rest for a bit around 1 or 2 with my legs up helps quite a bit. Then I can continue my day. I try to listen to my body. I still feel guilty about not working and bringing in a pay check. We have had to cut back on a lot of things. I have filed for social security benefits but we all know that is a very long process. Which makes me angry, but we won't go there today.

I am being treated for depression as well. Seeing a counselor helps as well as the medicine they gave me. (celexa). I didn't think I would learn much from my counselor, but she helps me understand the feelings I am having and teaches me to cope with them.

My DH has been wonderful. I am learning to let him help me more. Even the things I know I can do, I let him take care of. I took care of him for over 10 years while he battled with depression and worked 3 jobs at the same time. He is better and now it is his turn turn to care for me. But the learned behavior of always taking care of everything, and him too, is still strong.

I take Tylenol 3 for the pain. Tramadol did not work.... I also take cyclobenzaprine(sp?) to help relax my muscles. I usually take that around 6 or 7 pm to help me wind down. I put my feet up and put on comfort tv. I have a heating pad I made for the really bad days. It used to have a lavender scent, but I microwaved it out already. Lol.

Again, thank you for taking the time to share with me and telling me how you handle things. It does help! I will try the hot evening shower. I have lavender soap alreay in the shower!

Kim


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