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Posted 2/15/2009 4:12 PM (GMT 0)
***Sigh***

Fibro is so unfair when it comes to the ones we love.  It snatches away our ability to do the things we might have had no problem with the day before and fills us with pain and confusion.  Tomorrow, who knows, we might feel just fine, we might feel worse, we might feel the same or we might have a brand new symptom that we have never had before.

Yesterday, Valentines Day, wasn't one of my better days.  I felt pretty good for a few days.  The night before (Feb 13th) was a rough one.  Didn't sleep well and woke up so sore and achey.  But I wanted to make it a nice day for my husband (who was just getting better from a nasty cold).  We went to a Valentines Day dinner dance. I got all spiffied up, hair, makeup, sparkley outfit (let's not even talk about how painful it was to get those dang pantyhose) It was lovely.  We met another couple that we really enjoy spending time with.  The food was great, the company was delightful, the setting was very romantic.  When it came time for the dancing (lets bare in mind that once upon a time I was a great dancer.. won lots of dance competitions, etc) a fear came over me that broke my heart.  I knew that just one slow dance was going to be total agony.  I was right.  My hips were absolutely killing me.  After we were done dancing, I excused myself, went to the ladies room, tried to stretch them out and cried from the pain.  No I wasn't sobbing, but a did shed a tear or two.  I didn't take any pain meds because I wanted to have a glass of wine with dinner and I won't mix the two.  By the time we got home, my stomach was so upset from the rich food and my body was screaming in pain.  I've never been glad that my husband was sick, but this time I was because he was ready to leave early because he wasn't feeling too well either.  I never said a word about the pain, but he knew.

Tomorrow, (Monday), I'll be heading out to a casino with my mom & sister.  I'm not a gambler, I hate casinos.. the noise and activity get my fog going full force..but I don't want my 81 year old mother to drive 2 1/2 hours on  the highway so I'll be the driver.  We'll be staying over night.  I know the drive will be a killer, but I'm doing it because I love them and I want them to be safe and have some fun.  I'll spend most of my time in the room... Thank God there's a jacuzzi.. that's the other reason I'm going. (a little selfish when it comes to the jacuzzi.. but .. well you know.. maybe it will make the pain and fog worth it!!)

So, what are some of the things you do for love?

Warm hugs,

  

Posted 2/15/2009 4:32 PM (GMT 0)
Hi Patti,

Yes, the things we do for love and for freindship. I am sorry that you are feeling so bad. I hope that you have fun at the casino, you will probably need that jacuzzi with all the driving that you are going to be doing.

I hope that you have a great time and feel well.

Luv and hugs, Karen
Posted 2/15/2009 4:36 PM (GMT 0)
Oh Patti,
I hope today brings you less pain and you are able to have some fun with your mom and sis.

I really think what you described above is what has gotten a lot of us where we are today. I'm NOT knocking it but, let's face it, most of us are huge nurturers, that is where we get our most pleasure, in giving and making others happy and in doing so, we put ourselves last. Doesn't seem fair, but I think, that is what got us to fibro, putting ourselves last. Just my opinion.

Sounds like your husband really understands what you go through and for that, I am sure you are very grateful. He didn't try to make you feel you were ruining his time or anyone else's. What a wonderful man you are married to.

My husband and I are married almost 29 years. We don't really celebrate the holidays and it's probably more my fault than his. I don't see the point in presents on birthdays or other holidays, because we've always bought ourselves what we need and want whenever we want it during the year. Sometimes I regret doing it that way, but I was the one that made that rule so I can't fault him for that.

We had a good day together yesterday. We spent some of it at our accountant's getting our taxes done and we actually had some good laughs there. His kids are going off to college, so we were giving him pointers. Our three sons are in their 30's and well beyone college now. Then, (drum roll)...we went to Costco!! Oh yes, quite a romantic day we had. Ended up preparing dinner at home, again, my choice. I couldn't even begin to think about how crowded the restaurants were last night and I wanted no part of it. We made the dinner together and it was nice and then, we were both snoozing on the couch by 8:30!!! At least we did it together!
Warm, gentle hugs to you and everyone,
Miriam
Posted 2/15/2009 5:12 PM (GMT 0)
{{{{{Patti}}}}}

I'm so sorry your romantic evening didn't turn out quite the way you wanted it to. Isn't it just the pits how fibro can steal our joy this way? (or at least try to!) We get all excited about going out and having a good time, and then fibro rears its ugly head and reminds us of how things are now. I really feel for you on this one and I'm sorry you weren't able to enjoy your evening as much as you would have liked to.

We fibro-mites are a strong bunch, though, and do end up doing things for those we love that we might not exactly feel up to doing. It's like the threat that...Marlee started? (I think it was Marlee??) about how our love for others can drive us to get things done. I think we fibro-mites do this all the time. I know it's definitely one of the things that keeps me going!

I do a lot of things for love that I otherwise might not do. Like, get dressed every day without fail. Oh, there are days when I want to do nothing but lie around in my pj's (and once in awhile I do do this), but I want my loved ones to know I'm really "here" with them. That I'm putting in that effort to be an active part of their days. I also will play games with my kids when I don't feel up to it and go spend time at my son's preschool even though it wears me out terribly, keep the house picked up so that my family can live in reasonably clean surroundings, walk my little dog, talk on the phone with my sister when she needs an ear even though long phone conversations hurt my shoulders and/or hands, dye my daughter's hair every few months even though holding my arms up like that KILLS, hang out and chat with my father (who loooooves to talk and talk and talk!) even though I might be exhausted, keep up with my school work so that I can give my kids a better future, have my in-laws over for coffee or dinner once in awhile even though it wears me out (this is more out of a love for my husband than a love for my in laws..lol)...oh, man. the list is endless, really, the things I do for others out of love, even though it may hurt me. Another big one is intimacy with my hubby. This is not to say that I don't enjoy this time with him at all, but it can really be quite painful. I take the time for this, though, because I know it makes him feel loved and I know it brings us closer.

Also, I do things like try to eat well and exercise and go easy on myself out of love for ME. Self love is something I've really had to learn (I've struggled terribly with low self esteem for years, but I've been really working on it since I met my hubby). Of course, you could also say I try and take gentle care of myself out of love for my family, too.

I think we should all be applauded for how much we do for our loved ones, not because we're martyrs or gluttons for punishment, but because we are kind and loving people who refuse to let this dd rob us of our ability to express that love. And I know most of the time, we do these things without complaint because we would never want our loved ones to feel bad or responsible for our pain. So, I say-Hooray for fibromites!!!! :)

I do have to say, though, that when I saw this thread title, my immediate thought was "...like walking in the rain and the snow when there's nowhere to go.." LOL. Am I showing my age here??turn

I hope you're feeling a bit better today, Patti. Good luck to you on your casino trip, too. I do hope you are able to enjoy it and don't feel too worn down afterwards.
Posted 2/15/2009 5:12 PM (GMT 0)

Well Patti...I do like to go to the casino and early last evening the hubby asked me if I wanted to go.  I had been battling a Meniere's attack for two days and by dinner time it was better so we decided to go.  The hubby doesn't gamble so he goes for me.  He sits in the lounge where the entertainment is and talks to friends he has met there...sometimes he grades tests.  What were we thinking??? The casino on valentines day where they had sold 'sweetheart packages' etc...the parking garage was full as was the parking lot.  We had to park where they keep the snowplows and it was a fifteen minute walk in 10 degree weather...of course I was not dressed properly...no hat or gloves...just a light coat never thinking we would have to walk that far.  By the time I got inside I couldn't feel my legs...the skin felt like it had shriveled up around every muscle.  I had to sit down in the hallway.  Then we discovered there was a major heavy weight fight going on in the event center.  It took us another fifteen minutes to wait in line to get down the escalator.  I told him we just just go home.  We had planned to eat dinner and the line was probably a quarter of a mile long. No...it was Valentine's Day and he wanted me to enjoy myself.  It took me a half hour to find a machine...I sat next to a woman who smelled like horse lineament and behind two cigar smokers.  I could NOT wait to get out of there.

Today I feel like a dozen trolls beat me with hammers while I slept...or half slept.  So this is what we do for love.  He would never go there if I didn't like to gamble once in awhile.(I usually go once a week with friends and just play with comps but last night I used real money and lost, of course!)  In return I go fishing with him.  Yuk and double Yuk but the scenery is beautiful so I just watch him not catch anything and enjoy just being with him. 

Huggies

donna

Posted 2/15/2009 5:39 PM (GMT 0)
I am 100% with Miriam on the discussion of putting others first. I call it the "goodist" tendency and think it is a HUGE part of fibro. I have noticed so very often in our posts the concern and love we share for others. I bet if we did a real poll we are all this way. Now it is just a big piece of the fibro tale.

Patti, your mom must be a real hoot. I gather she would go alone, imagine. You will have some fun just being with them.

good luck Girl,

Patsie
Posted 2/15/2009 5:42 PM (GMT 0)
Patti at least you got all dolled up and went out for the evening. I haven't done that for soooo long. Evenings aren't a good time for me energy wise. I'm sorry you had pain but the thought of slow dancing with my hubby makes me want to put music on and have a dance even though we are both in our robes. 

 

A couple of weeks ago I started a thread on how love is stronger than fibro when it comes to taking care of our families and the ones we love. I don't think I realized this til this winter when my DH went through all the heart problems which I so hope is over now and he is on the mend. I have not a huge family but enough to keep up with and another one on the way in a few weeks.

 

When we had a few good days in the 60s I was taking Krissy, my baby puppy, out for walks and it took her a couple before she was hooked. Fri I had to run some errands and when she seen me put my coat and shoes on she started crying, I could here her crying even when I got into the car. I ran my errands and came home and I was so guilt ridden from not taking her for a walk that I bundled up, it was in the 30s, and took her over to my neighbors so she could be with her dogs and then we took a short walk. So it doesn't even have to be our two legged family that keeps us doing things even when our bodies don't want to.

 

So for those of you that don't have a family adopt one that could use the help, believe me there are plenty out there. Join the big sister/big brother program or go to nursing homes. Adopt a furry friend that depends on you. I think we all have to have a purpose in life, fibro or not.

 

luv and hugs

Marlee

Posted 2/15/2009 7:14 PM (GMT 0)

((((((My sweet sweet FMily))))))

You always make me feel so much better. 

And yes, I agree that we fibro-mites have a tendency to put others first.  I don't think I would have wound up in the flare of a lifetime if I hadn't made my job my life.  Being the director of a non profit community organization consumed me.  I felt I HAD to put my community first... heck there were thousands of people that depended on me to make our area a better place to live.  I did that for love of this community and for the people that live here.  I did it to have a decent income for my family. I did it to make my family and friends proud of me.  Some people said, a big job like that must be an ego boost.  I never thought of it that way, I thought of it as community dedication. 

So yes, this is one of the things I did for love. I don't regret a minute of it.  But I'll never do anything like that again, because, as Daneille mentioned, now my "love of self" has got to come first.  And once I can get myself better I can think about commiting myself to others, but I'll always remember that I have to live life differently now.

Marlee.. I remember the thread you started when Ken was in the hosp.  It was incredibly touching.  LOL, to you Donna, I didn't know you liked to hit the casinos so much.. any pointers??  ( I did win $1100.00 once playing roulette.. had no idea what I was doing.. but I knew I was winning!!).  Patsie, my mom is a hoot alright.. she still smokes a pack a day, loves to gamble and her wine.  Danielle, you really know how to put things into words - that's a wonderful gift!!  Miriam, you're right - I have a wonderful husband and I adore him.  Karen, thanks for the good luck wishes.. If I win any money I'll donate some to our Healing Well site.. But knowing me, I'll probably spend more time in the jacuzzi than on the casino floor.

Thanks again, my friends.  You'll never know how special you are to me.

Hugs to all...

Posted 2/16/2009 1:59 AM (GMT 0)
Patti, and everyone else, what a great topic. Patti, you and I could probably talk for hours. I, too, have been the director of a few non-profits. Community development, foreclosures, homelessness, seniors housing, women's health, juvenile court system, habitat for humanity, literacy, rape survivors, and domestic violence. 25 years of service to others and I have FM but no gold watch. WOW I sound so negative and angry, but truly, I'm okay with the way it all turned out. I did my best, usually gave better than my best, and I can live with that. I have learned a few lessons tho :) about boundaries and how to contribute [hopefully soon] to my new community without again literally giving it all I have. Was it for love? It was, for a big love deficit, a huge hole in the community heart- did I make a difference? Not so much. But I'm okay with that, too. I have been hanging on to the notion of being somehow essential to the whole big picture for far too long. Today my hoosband took me to Yum Cha at a local spot. My fortune said, "Accept something that you cannot change, and you will feel better." Amen to that :)   wink
Posted 2/16/2009 12:58 PM (GMT 0)
I am sorry your evening did not turn out the way you planned. I actually like gioing to the casinos I would probally have a gambling problem if we hAD ONE CLOSER. opps sorry about caps . I have also done some community and volunteer work someone is actually trying to talk me into joining emergency managment . My husband volunteers for them and one of the members is trying to talk me into it because I usually help out in emergency situations...We had a foster child live with us for awhile that was tough. She was abused. long story... I am at the point where I like to help from the side lines and not throw my self in 100% .
Lee Ann
Posted 2/16/2009 1:33 PM (GMT 0)
I'd like to say a mad bit about what I try not to do for love. I am Bipolar. I have hypothyroidism, back injuries, and Fibromyalgia, which due to stress, right now is about as bad as it's ever been. I cannot reach for a book on my bedside table without excruciating pain. Or use the washroom or take dogs out, or sit jammed up in the tiny backseat of my car with the dog jumping all over me b/c I prefer not to drive, and besides my son is helping me out right now, and it gives him a boost to chaffeur us around. So, we pick my Dad up and drive 50 miles with me crammed behind my Dad's seat as he needs lots of room, my feet are freezing, everything aches and I say "oh, I'm fine" when asked "are you ok". When I backseat drive, my son says "mom you have to shush" , so I shush. When brother calls blaming me for everything that is wrong in his life, I wait till he is finished and then I say "I hope you are feeling better soon, you are always welcome here." I have put up with stepmother's outrageous demands for thirty years, in order to be able to see my father, because she was the "gatekeeper". I do not tolerate fools gladly, but I bite my lip. Right now I have a piece the size if a dime chewed off. So, I try not to complain. When asked, "How are you", I respond, "fine", even though that's a blantant fib. I just know they mean "hello", so I just give them back the equivalent of "hello". Like ML lady, I think this reverence for other's is probably part of what landed me here to begin with. Cést la vie. I think in my next lifetime, I will be selfish. Not.
Posted 2/17/2009 7:36 PM (GMT 0)

OK,,, I'mmmm baaa-aack!!! 

Had a nice time with the "girls" at the casino.  And the part about the jacuzzi... yeah not so much.  There wasn't a jacuzzi in the room shakehead Bummmm-mmmmer.

But things worked out pretty well, of course I won NUTHIN', but did some awesome grazing on the buffet. OINK!!!  My sister won.. $400.00... grr lol only kidding.. I'm thrilled she won some money, she's disabled and she sure can use a few exta buck.  Mom, well lets just say I must have her "luck gene". 

I wanted to thank all of you for your post about love of community.  Sera, yes!! I'd love to elaborate on non-profit careers. I didn't know we had that in common!! :-)

Tyno, you are an amazing caregiver!

Lee Ann, you have my respect for the Emergency Service.. I couldn't do that, I can't handle emergecny situations too well... I totally freak out and as for the foster care.. high fives on that, no way could I do that.  Once the kids were grown and gone, I was done with the motherly thing.

Warm hugs,

Posted 2/17/2009 8:04 PM (GMT 0)
Hey, Patti! Welcome back :-) I'm glad you had a good time even if you didn't win anything. (I know it's pathetic, but if I were to go to a casino I'd probably be more excited about the food than the gambling anyway..lol)

How are you feeling after your trip? Hopefully not too worn out-that's too bad about the jacuzzi, though. I looooove jacuzzis! (I will own one someday. Oh, yes I will)
Posted 2/17/2009 8:17 PM (GMT 0)
Hey ((Danielle))

A little wiped from the "jamming it all into 24 hours thing" - Glad Hubby has a band practice tonight.  I'll probably just pick up a couple of sandwiches for dinner and climb into bed early. 

It was kinda sad in a way.. I really noticed my mom slowing down, usually she runs circles around me.  She got tired really easily yesterday.. and HEY that's usually MY job.. LOL.  I hope she's OK, it's not like her to not be the life of the party (at age 81- God bless her).

Warm hugs, 

Posted 2/20/2009 2:46 PM (GMT 0)
I'm bringing this back up because-ugh!!!!! I am about to have a veeerrry long weekend because of love.

Ok, long story short (hopefully lol) tomorrow is my birthday and my sister and brother in law were coming down for the day to celebrate with us. Having company is tough on me, but I don't mind for a day-besides, they are the best company we know! (very laid back and funny and kind-I just love 'em both dearly) Anyway, so they were coming tomorrow and today my dad is taking our younger kids for an overnight visit and hubby and I were going to take today to have some peace and quiet and a relaxing day before the busy day tomorrow-tomorrow is also our 6 year old's son 1st soccer game at the YMCA, plus my in laws will be coming over for a "joint" b-day party thing-my father in laws b-day is today-so it will be a very busy day indeed, but I figured it would be fine since we'd have quiet today.

Well, my sister called at about 8 am today to say that since we are supposed to get a ton of snow tomorrow, would it be ok if they came down today and spent the whole weekend? She was very apologetic about it because she knew today was our "day off", but that they really wanted to come down and see us but didn't want to drive in the snow. I of course said yes, because I love them and love seeing them-but now I'm thinking-ugh!! An entire weekend! And I of course am fighting a cold and just starting to feel better from my last flare. Fortunately, as I said my sister and bil are super laid back and will not be offended at ALL if our house is kind of messy and we dont do a lot, so at least that's a bonus. I know myself, though, and know I will clean before they get here and feel the need to be a good hostess anyway-I have to learn to get over this!!-so I'm hoping I am able to control myself lol so I don't go back into a flare!
Posted 2/20/2009 3:25 PM (GMT 0)

Hey Danielle!!! 

I was just starting to worry about you .. haven't seen much of you the last few days.  I guess your cold had you down.   Hope you're all better soon!! :-)

First off (I wish I could have a bigger font size) Happy Birthday!!!!!! yeah Ok.. geez.. I can't change the color back..LOL!! 

So, I guess the rest will be in red..

Hey, if they're laid back .. don't bust your butt to have them over.  (I know that's like the pot calling the kettle black) but really.. you're just getting over a cold.

Yeah, this snow storm thing stinks!!  The wind has been really nasty too.. I was in a total white out yesterday but we only got about an inch.. the wind was whippin' those little squalls like mad.  I don't blame your inlaws for not wanting to drive in it.  And just enjoy 'em, they know they're kinda getting you off guard so don't worry too much about how the house looks.  I hope you guys will still be able to have the party tomorrow.. you deserve a party!!!

Have fun... and a GREAT Birthday!!!!!

Hugs,

 

 

Posted 2/20/2009 4:14 PM (GMT 0)
Happy birthday Danielle!!!! I heard on the news this morning that some places have all most set records for the most snow on record. We have been so lucky here in central Illinois cause we have had very little snow this winter. We do have an inch or two in the forecast for tomorrow.

 

Since your sister and BIL are so laid back I'm sure they will understand if you have to go to your room and rest when you need to.

 

I'm having everyone home again in three weeks and then again in April when the new baby arrives. These are our children and grandchildren and I do not wait on anyone. They all know where everything is in this house. I will probably fix a few things that are easy to warm up in the microwave and they can fix their own meals and their childrens.

 

I am starting to freak out a little over the house that has not had a good cleaning all winter but Ken and I will do what we can and if anyone doesn't think something is clean enough they are more than welcome to clean it.

 

It has taken me a long time to get where I am now with the whole clean house thing but I'm making progress. There will be six children in here for the weekend, I'm sure I will have plenty to clean up after they leave.

 

Enjoy the partying.

luv and hugs

Marlee

Posted 2/20/2009 4:51 PM (GMT 0)
I'm facing a month or more of likely pain and extreme fatigue (which I already have), but Usually I don't have to explain it to anyone. What's coming up is DH and I are going to Texas to bring my mom back to Iowa to sell her house. She then will move in with my sister in Texas permanently. Her house is a couple of hours from where I live and I will have to stay with her all the time she is getting stuff ready. I also probably will have to do the majority of the work and getting a realtor, etc. The biggest problem is my mom and I don't get along, I'm too much like my dad. And I will have to be with her 24-7 for maybe more than a month. I'm really dreading this. Plus I do have some things of my own to do in a month's time. Diane
Posted 2/20/2009 11:12 PM (GMT 0)
Dear Red Dianne: I had a chuckle when I read smilewinkgrin your post about your mother being glued to your hip for a full month or so. I have to be very delicate as I say this: When I came to help my dad with his Alzheimers 27 months ago, his wife, my stepmom was still living at the house, was on peritoneal dialysis, which meant she had to be hooked up to a dialysis system four times a day. It takes 45 minutes to an hour each time. Now this woman rarely, if ever did a scrap of work, even when she was well. So, here I was, dealing with Dad, dealing with her dialysis, and the utmost humiliation, dealing with her demands around the clock. Oh, yeah and dealing with Fibro. So, it may seem impolite but when she was hospitalized and told she wouldn't be coming home again, ever, I had to run out of the room b/c I was hopping up and down like a little girl getting her first Barbie Doll. This woman, I have had a really hard time, pretending to like, just to see my Dad for thirty years as she was gatekeeper. When I would go visit she would say things like, "you must have  work to do at home?" Yes/ So my visits were short and sweet until such time as they both needed round the clock care. She had me lugging great hugh suitcases of her junk all over the place. I kept the change, once from buying her cigaretttes, to buy a coffee and caught h---. for it. I was the ünpaid help. So, boy can I relate. 
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