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The things we do because we have fibro

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Posted 6/13/2014 1:10 AM (GMT 0)
It struck me today that we do some odd things or things we'd never dream we'd do because of fibro. Today I had to re-cover a blanket that my great-grandmother made. The fabric was so threadbare and and full of pills that it felt really rough and painful on my skin. In order to get the width to fit the new fabric I had to cut it and I almost cried. If not for the fibro, I would have left it alone for a lot longer. What do you find yourself doing that you didn't expect to ever have to do?
Posted 6/13/2014 2:19 AM (GMT 0)
I usually will grow my own tomatoes. I'll take seeds from the year before, that I have stored. When it's time I germinate them in a wet paper towel, plant the seeds in very small egg carton type of holder ans as they grow keep changing the pot they are in then plant them in the ground. Last year I had over 100 seeds germinate. I planted 30 plants. It was great but tons of work.....for the first time in years, I didn't plant my tomatoes. I was pretty bummed cause I really enjoy to garden.
I've decided to take this year off and see how I am doing next year.

I also never thought I would put my coffee in the refrigerator to HEAT it up!! The microwave is next to the refrigerator so I was close!! Ha ha
Posted 6/13/2014 2:38 AM (GMT 0)
I think a lot about the hereafter....
I go into a room and say "What am I here after?" :0))
Posted 6/13/2014 5:23 AM (GMT 0)
Great topic! I never thought I'd have to ask someone else to lift or move practically EVERY single thing I want moved. It drives me crazy! In my house, everything pretty much stays where it lands - hubby generally cares not one whit. I can only ask for a couple of "favors" (things moved) at a time and so I have to be very well - organized (ha ha) and know exactly what's most important at a given time. Well, I'm chronically NOT organized. And even if I were, there's too much backlog - I can never catch up. I was never what you'd call a clean freak, but when I was younger I never dreamed I'd live in such a messy, dirty house.


I never thought I'd have to pick clothes and shoes based almost entirely on comfort. I could write a huge paragraph on that one, but I'll spare you :) I'm sure a lot of you can relate ~ I get enough negative signals from my body all the time, I'm not about to put up with more because of my clothes!


I never thought I wouldn't be able to have a career, to know the satisfaction of that - and earn almost no money (which has made it hard financially all these years.) I do substitute-teach, but marginally.


Debbie
Posted 6/13/2014 6:40 AM (GMT 0)
AB, do you have a good grabber? I can't bend much due to my back so I use my grabber to pick up items on the floor. I keep a hamper (with wheels) in my bedroom for all dirty clothes. When I take something off it immediately goes in the hamper.
Posted 6/13/2014 11:07 AM (GMT 0)
I'm with Debbie on the clothes and shoes thing. When I was younger, I was somewhat into fashion. Now, it's all about comfort.

I also run around the house with a Body Back Buddy (similar to Theracane). I can't imagine life without one these days.

I drag a chair into the bathroom when I dry my hair, and I am careful not to go anywhere that would require prolonged standing (combo of fibro and back issues).
Posted 6/13/2014 11:50 AM (GMT 0)
Great posts and I agree with each of them.

I find I often have to rest (not sleep; just sit or lie quietly for a while) before going out, either shopping, visiting, to Mass, etc.. I still can't believe I have to do that, but when I don't, I sure pay for it later!

I do miss the 'old' me who used to have so much energy and could go for hours and hours, no problem.

But if anything, I guess fibro is teaching me to have patience with myself. Not easy, though.
Posted 6/13/2014 2:27 PM (GMT 0)
I never thought I'd wear loose clothes for comfort or go bra less 90% of the time to prevent unbearable pain, or stop taking long walks for exercise or just want to stay home all the time, or especially not even want to go riding horseback because of the pain. We live on a ranch, so giving up riding especially hurt. I also never thought I'd ever get religious, but as I study & pray in RCIA classes to enter the Catholic Church, I find that's the only kind of books I enjoy.
Posted 6/13/2014 3:03 PM (GMT 0)
I never thought I would rely on others to do things I used to do (like grocery shopping) I never thought I would be semi-retired at 59! Still working (self employed author and counselor) but have alot of SPACE in between all activities. I also never thought I would get a chronic illness that would slow me down so much!

Thanks for this topic!
Bella
Posted 6/13/2014 3:18 PM (GMT 0)
Joy, I had a good laugh thinking about the "hereafter"--so true in my life.

I never thought I would like to travel with an organized tour group, I had always just grabbed a backpack and took off. Now I need someone else to take care of the details and make sure I have a place to sleep at night and an opportunity to rest during the day.

I never thought I would have the patience to let someone help me with lifting and carrying.

I never thought I would walk away from an argument because it causes stress to disagree.

I never thought I would say "I can't, I need to rest."

I never thought I would come to terms with fibro, I have relapses with accepting my new life, but am more at peace than I was 6 years ago.

Thanks to all the lovely people on this forum for sharing their lives and ideas.
Posted 6/13/2014 5:31 PM (GMT 0)
I never had to pace myself before fibro but am very glad I have learned to do this.....most of the time.

I would never be walking daily. Now I do and I see so many beautiful things and nature in progress. I would have missed all of that if I hadn't started walking.

I'm more compassionate than I was before fibro. I was compassionate, don't get me wrong, but I "understand" far better than before I developed this invisible illness.

So there are some good things that go along with this illness and one of the biggest is this forum and all it's members.

Sherrine
Posted 6/13/2014 8:55 PM (GMT 0)
Azgram: I enjoy those spiritual books, too. I'm now (slowly) reading The Diary of St. Faustina, once again. Much food for thought, and I find that this type of reading really relaxes me, which is especially good when I'm in the middle of a nasty flare.
Posted 6/14/2014 12:00 AM (GMT 0)
I never thought I would dread going away because no bed is comfortable and there are never the amount and kind of pillows that I need to get comfortable…
I never thought I would have to immediately rest after working in order to survive.
HEART
Oh, and the clothes…yes…only comfortable ones…and the shoes, the shoes…so hard to find the right shoes!
Posted 6/14/2014 12:14 AM (GMT 0)
I sure agree with all of you who said we gain more compassion, wisdom and patience - what choice do we have, in the long run?

Joy, I have 4 reachers since my spine surgery! I can't get down to the ground at all, so I'm truly dependent on them. A pair for each floor of the house - a longer one for "everything," and a slightly shorter one for "sanitary" purposes (food, etc.) But I still can't pick up anything heavy - it hurts my whole back.

Debbie
Posted 6/14/2014 2:34 AM (GMT 0)
I go bra-less at home a lot and completely naked if I can. I'm generally commando in public, too. Ask me ten years if i'd be doing that and I probably would have turned beet red! One thing I've really been grieving lately is the lack of physical intimacy with my wife. But, as Sherrine said, there are up sides. Having only one income stinks but I'm trying to make the best of not being able to work and am enjoying all of the together time with my boys now during summer vacation.
Posted 6/14/2014 2:39 AM (GMT 0)
Oh! I forgot one! Coincidentally, my ex-husband was diagnosed with fibromyalgia and psoriatic arthritis a year before I was. Having fibro myself has made me actually empathetic with him and we get along better, where our relationship was very contentious for a very long time.
Posted 6/14/2014 4:04 AM (GMT 0)
Never thought I would have to put on my favorite 'dress' shoes to go to an anniversary party but have to take a pair of unattractive tennis shoes with me knowing my feet would be killing me within the first hour. The bra comes off in the rest room also. Dressing for special occasions is so frustrating. Pain vs comfort.
Posted 6/16/2014 3:14 AM (GMT 0)
I know, Donna! So many people will say, "Oh, you can put up with a little discomfort sometimes to look better!" They just don't understand that it goes waaay beyond a little discomfort! When you have chronic pain, it really ups the ante.

Debbie
Posted 6/16/2014 3:34 PM (GMT 0)
Re: beds. They hurt. Mine is better than most. I never ever thought a hotel bed would be more comfortable than my own! Last weekend, I slept all night! Best night's sleep in years!

What I do differently is bring someone who is around me often to an appointment. Often when I arrive there (even if I made a list), I forget what I need to say. The person with me tends to fill in the blanks.

Doctor: How often do you get Migraines?
Me: Um, well... maybe once a month or so? They sometimes cluster up.
Family member: No, she gets them at least once a week.
Me: Oh. What she said.
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