I need to say that this post started off in one direction and then I kinda changed my mind and went another way....read and you will see what I mean..haha
Am I the only person with fibro/cfs and ALL the other crap that goes with it to loose their identity??? For the past couple of months I have really been fighting a silent battle within myself and I seem to be loosing!!!!
On a daily basis I seem to be loosing a little bit of myself........
People don't see this, people don't know this. Unless you have fibro and live daily with the pain and the fatigue and the never ending fight just to get thru the day. Everyday it takes everything I have just to get thru it, some days I can do more than others. I wake up and lay in bed wondering what I will accomplish...
On a good day I drink my energy drink and I make it thru the afternoon...I will be in pain but at least I get a small boost to do some things for a couple hours. But then again that doesn't always work.
My friend Rosemary has a blog and in her most recent post she mentions living in isolation. I soooo understand that and how it could be easy to do! There are many days, more than I care to count where I would rather just be by myself! It is easier to deal with the pain that way! After so many years of talking about about it, complaining about it and just dealing with the pain it becomes easier to deal with it by myself. People get tired of hearing about it!!!!! I get tired of talking about it! I get tired of dealing with it!!! So many days when I am in pain I will just lay on the bed and mindlessly look at my computer. ( what would I do without my laptop? I think I would go insane) When I am hurting not having to talk or think helps a little. I know that probably doesn't make sense to most people but to those of us that suffer with fibro/cfs it makes perfect sense!!
My friend Rosemary also mentioned your body betraying you and how do you deal with that? I am still trying to figure that one out.....I have mentioned so many times my husband Jim and how wonderful he is, he is the BEST! This is one of the toughest parts about fibro, actually EVERYTHING sucks about fibro!! Jim and I are really trying to work thru the body betraying you part.....I want to be like my old self and Jim wants me to be like my old self too!!! I can't begin to guess how many marriages have ended because the spouse has fibro?? It changes you, you become someone you don't want to be!!! I find myself snapping at Jim for the slightest thing. I find myself being selfish with my feeling "good" time. What I mean by that is....I am of course a type A personality (that didn't change just because I have fibro)and when I am feeling good I try to do what I can around the house or in the yard. Hence, Jim loses out on quality time with me....I wish I was rich and could afford a maid and yard person..haha
When Jim and I got married I could do it all....I know, I know you don't have to tell me...pick and choose what I want to do! I can clean later! The yard will be there later!
I am not as bad as I make it out to be,,,I do let things go....I spend a good bit of my day laying around looking at what all I wish I could do!
MY PERSONALITY JUST SEEMS TO HAVE BECOME BLAH!!! I MEAN, I AM TYPING THIS AND I JUST FEEL BLAH....IS IT POSSIBLE TO NOT FEEL AT ALL??? TO NOT HAVE ANY EMOTIONS AT ALL? I FEEL LIKE AN ALIEN HAS COME DOWN N THE MIDDLE OF THE NIGHT, SUCKED OUT THE PART OF MY BRAIN THAT ALLOWS ME TO HAVE ANY EMOTIONS.
Depression, that is another area that I fight with on a daily basis! It is something else that people don't see...I try not to let them know, kind of like my dirty little secret. I will NOT take any little pill for this. Not that there is anything wrong with it....if it works for some people then that is great. Many millions of years ago I tried several different kinds of pills for depression and the side effects were soooo not worth it for me. ( i know they have changed alot since then)just not my cup of tea!
I really do struggle silently every day with so much! It wears me down in sooo many ways!!! I was diagnosed just over 4 years ago and cannot imagine what my life will be like 4 years from now. I hope and pray every day that they find a cure!!
When I met and fell in love with Jim, (which by the way happened at about the exact same time)I never imagined our lives would be like this. GOD DID THOUGH!! I know that God has his master plan and am putting all my faith in him...he knows what he is doing! I keep telling myself that!!!!!!!!!
This site is designed to record the progress of living with, dealing with, and trying to understand the Invisible Disease. I hope to have post from myself, my husband, and my children on what its like as a family to live and deal with Fibromyalgia.
Thursday, December 30, 2010
Wednesday, December 29, 2010
I made it!!!!
Well I made it thru Christmas and having a house full of family...I don't have a small house but I do have a very small kitchen and a small living room. So having 8 adults all at one time.....whew!!!! I would not have wanted it any other way though...:)
My dad knew that my oldest brother and his wife were coming but my mom didn't so the surprise was wonderful. We went to Christmas Eve service and it didn't look like Steve and Claire were going to be able to make it here in time but they did!! (they drove in from Tenn) I was sooo happy to have most of my family at church with me. Next year, my daughter will be up for Christmas and that will make it perfect. This year she spent Christmas day with her boyfriend. I was kinda bummed but I also remember what is like to be young and in love....(this is my daughter's first long term relationship)
Another really great part is that my stepson, Kyle came over and spent a good bit of time with us.....he is really growing into such a young man! After church service my mother in law Sue, my father in law Mike, Jim's sister Kris, my brother in law Kent, and my nephew James came over as well. OK, now talk about a house full of people but I LOVED IT!!!
I know you are wondering, did I rest any? Did I take it easy? Did I relax? Well I kinda sorta maybe did!!! Let's just say, I think I was the perfect little hostess. There was plenty of food, hot fresh coffee, and I kept my house picked up.
To top it all off.....WE HAD A WHITE CHRISTMAS!!!!! IT SNOWED CHRISTMAS EVE AND CHRISTMAS DAY....we got about 9 inches...
My sister in law has fibromyalgia so she of course kept worrying about me and telling me to sit down and relax...hahaha, that wasn't going to happen! I was going to go as long as my body would let me. I knew that I would pay for it later but I was going to enjoy it while I could and I did!!!
I was very lucky while everyone was here the only really bad pain I had was my legs and feet. My right hip is still giving me a fit, going to talk to my doctor about it on my next visit. My stomach feels like I swallowed a bag of rocks. I look as though I gained 10 and my IBS is in full swing. Of course all the sugar cookies I ate might have something to do with that...180 calories per cookie!! Can you believe that?? It has icing and sprinkles on it..major yummy!! I have eaten 4 boxes..180 x 48 = 8640 calories!!!!!!! Can we say O MY GOODNESS!!!!!!!!!!!!!!
Sugar is so the 1 thing my body does not need, the 1 thing that makes my body go hay wire!
Can we say...back to the gym for me!!! My goal was to be in the 120's by the end of 2010 and unless I can lose 2.5 pounds in 2 days that's not going to happen! I mean I could lose 2.5 pounds quickly but doing it the wrong way just means it will come right back and when I lose it.....I never want to see it again..hahaha
During my last doctors visit we discussed changing my pain meds after the holidays. To be honest I am somewhat nervous about changing. I mean I know that one of the pain meds I take does not help me with my IBS so getting off of that one will be nice, if it helps. Just going thru some of the withdrawals will not be fun..:(
Right now I have the house all to myself so I am going to lay here and catch a few minutes of shut eye..
O'yea and the pictures are:
1. My house....the pictures was taken last year but it pretty much looks like this now with all the snow..EXCEPT MY BEAUTIFUL TREE IN THE FRONT YARD FELL OVER THIS WEEKEND....(i am hoping to save it)
2. my dad and his friend Dutch...well he is my friend too! my dad is on the right.
3. my mom and Dutch's wife Marga...my mom is on the left
4. me and my brother steve and his wife claire.....i am still in my pj's :)
Monday, December 20, 2010
Getting Excited
I swear the years are going by faster every year!!! Just yesterday I was laying out at the beach and spending time with my friends from Holland. Just yesterday I was eating dinner with my daughter celebrating her 19th birthday. Now it is 4 days before Christmas and I swear time really does fly!!!!!!!
I always say I am going to be done with my shopping a month before Christmas but have yet to accomplish that goal but you know what? I am not going to stress over it!!!! STRESS IS THE ONE THING I AM TRYING HARD NOT TO DO!!!
So I ask myself why am I doing more this year for the holidays than I have done in many years? I want to be around family that is why!!! Last year and this past year have been a very tense year for me and my family. My mom was very sick and closer to going to see God then I ever wanted her to be. She went into the hospital to have hip replacement surgery and ended up being in there for almost 2 months, I think? I can't remember how long it was now I just now it seemed to feel like an eternity!!!
My mother had a very hard road to battle but she did and she won!!!! My father, well let me just say that I love and adore my father and I don't ever want to have to go thru that again with him.
My husband was my rock and I could not have gotten thru it without it!!
My brother Steve came home for a day and night and to watch his face when he saw his mother in the hospital bed about broke my heart. I love my brother......
Then a couple weeks later Steve came back with his wife Claire and that visit just made my heart swell with JOY!!!! First having all of the family together for the first time in a million years, that in it's self speaks volumes!!
Then there was a moment in the day where Claire and I met this older lady coming into the hospital and we have a brief but life touching conversation. This sweet lady was a widow and told us about how she used to be a nurse and some other short stories. Well, Claire used to be a nurse and to hear the 2 of them talking just made my heart smile!!!! Then we parted ways and went to visit my mom. While in the room, Claire started to wash my moms feet and rub them with lotion. Anyone that knows my mom knows that her feet are very sensitive that she has alot of circulation problems so touching my moms feet is a huge thing. I just sat that and watched Claire with total AWE and LOVE!!! I don't think I have ever told her this. (so Claire, you know know!!!) I actually blogged about it right after it happened because it touched me so much. We were all sitting around talking and here Claire is, being the "nurse" caring and loving on my mom!!!! That meant more to me that she will ever really know!!!
So, since I have to end this post now (really have to get in the shower) I am having my family for Christmas and not stressing (well not to much) because I love my family and want to be around them!!! last Christmas was to me a TOTAL disaster and this one will be one full of GREAT and HAPPY memories.
I always say I am going to be done with my shopping a month before Christmas but have yet to accomplish that goal but you know what? I am not going to stress over it!!!! STRESS IS THE ONE THING I AM TRYING HARD NOT TO DO!!!
So I ask myself why am I doing more this year for the holidays than I have done in many years? I want to be around family that is why!!! Last year and this past year have been a very tense year for me and my family. My mom was very sick and closer to going to see God then I ever wanted her to be. She went into the hospital to have hip replacement surgery and ended up being in there for almost 2 months, I think? I can't remember how long it was now I just now it seemed to feel like an eternity!!!
My mother had a very hard road to battle but she did and she won!!!! My father, well let me just say that I love and adore my father and I don't ever want to have to go thru that again with him.
My husband was my rock and I could not have gotten thru it without it!!
My brother Steve came home for a day and night and to watch his face when he saw his mother in the hospital bed about broke my heart. I love my brother......
Then a couple weeks later Steve came back with his wife Claire and that visit just made my heart swell with JOY!!!! First having all of the family together for the first time in a million years, that in it's self speaks volumes!!
Then there was a moment in the day where Claire and I met this older lady coming into the hospital and we have a brief but life touching conversation. This sweet lady was a widow and told us about how she used to be a nurse and some other short stories. Well, Claire used to be a nurse and to hear the 2 of them talking just made my heart smile!!!! Then we parted ways and went to visit my mom. While in the room, Claire started to wash my moms feet and rub them with lotion. Anyone that knows my mom knows that her feet are very sensitive that she has alot of circulation problems so touching my moms feet is a huge thing. I just sat that and watched Claire with total AWE and LOVE!!! I don't think I have ever told her this. (so Claire, you know know!!!) I actually blogged about it right after it happened because it touched me so much. We were all sitting around talking and here Claire is, being the "nurse" caring and loving on my mom!!!! That meant more to me that she will ever really know!!!
So, since I have to end this post now (really have to get in the shower) I am having my family for Christmas and not stressing (well not to much) because I love my family and want to be around them!!! last Christmas was to me a TOTAL disaster and this one will be one full of GREAT and HAPPY memories.
Monday, December 13, 2010
What friends are for....
Well,I said that Saturday was a great day, my whole weekend was even better!!! Sunday was of course a little sad because after church Karen and William left to go home but I have some wonderful memories to cherish!! Usually after a busy weekend, (which it really wasn't a busy weekend now that I think about it)it was a very calm, fun, relaxing weekend. We went to dinner Friday night downtown then came home and just talked in our pj's. (me and Karen were in our pj's) Saturday morning, Karen and I went to a cookie exchange / craft thingy that our church ladies were doing. I was sooooooo afraid I would not be able to be able to go because we all know how I don't do morning well at all!! Guess what, I did great!!! God was answering my prayers this weekend :)
I had taken Karen to Fresh Market the night before because I had to get cookies (yes, I know I am supposed to bake my cookies for the exchange) Anyway, we stopped by there again on our way home to get some more goodies for supper and some goodies to munch on and who did we run into but our handsome husbands..:) They decided to tag along with us so we went to lunch.
After lunch we went to get our UGLY, SHORT CHRISTMAS TREE...YES, you read right!!!! For the past couple years Jim and I have made it a point to pick out the ugly tree that no one wants, It is so funny to watch when we go because as soon as we ask them for the ugliest tree they ALWAYS know where it is. They always have it put to the side, poor tree!!!! I THINK OUR TREE IS BEAUTIFUL!!!!
After we got home I had to go lay down for about an hour. I was starting to feel run down and didn't want to make it worse. I was going to make deer chili when I woke up......well my wonderful husband made it while I was sleeping!!!! It tasted delicious too, I have eaten a couple of bowls so far...:)
We decorated the tree and I actually had a glass of pomegranate wine, it was really good too!!!
Not only did Jim cook the chili that day but he also surprised me by fixing the Christmas lights on the front porch, (I love the way they look!!!!) put the mulch down for me. I still need about 20 more bags but it's a start... He even fixed the spot lights on his jeep. Of course by fixing them it takes that off his Christmas list..haha Now I am back to the drawing board for some other things to get him.
I am kinda tired today. Having a hard time getting started but over all it's not that bad considering.....but then again I would do it all over again because I loved seeing my friend Karen.
Sunday, December 12, 2010
Great day!
Today has been a fantastic day! A day were everything has gone right and just been a really really good day.....One of my bestest friends in the whole world came up from Charleston SC to see me (with her hubby, William). Well, actually they came up yesterday if I am too be 100% accurate..:)
Anyway, all week long I have been worried about having a flare or just being in a lot of pain when they got here. I had been trying to get the room ready that they are staying in and trust me that took some work but I am soooo pleased with the way it looks. Normally I could have had the room done in a day and a half this time it took me 4 days because I refused to let it tire me out.
It has just been a great day!!!!
Anyway, all week long I have been worried about having a flare or just being in a lot of pain when they got here. I had been trying to get the room ready that they are staying in and trust me that took some work but I am soooo pleased with the way it looks. Normally I could have had the room done in a day and a half this time it took me 4 days because I refused to let it tire me out.
It has just been a great day!!!!
Monday, December 6, 2010
Just a little humor to lighten the day
A note from Gizzy
Hello everyone I am Lynn’s cat, she named me Gizzy about 7 years ago when she found me in the rain sitting on her porch and she and Alexx took me in. She is married to a guy name Jim who is a Dog lover but I am breaking him down, he now allows me to sleep on him when he is laying on the coach but that is our secret.
I am sure by now you are wondering why I am writing a post. The reason is I have some major complaints and I want someone to fix it, and fix her. Lynn may rule the roost but I am the queen of the castle and some things have been bothering me the last few days. Lynn has been laying around not feeling good. I get up in the morning and go check my bowl and there is no tuna there so I pounce up the stairs looking to see where she is and what do I find, she is hiding under the blankets. I will fix this I jump up on the bed give a big head butt and she will get moving. To my surprise she just looks at me, what no hello, no I know I know I am coming she just lays there looking at me, I know she knows I need my tuna. I will rub against her and this will get her going, she slowly reaches for me and mumbles something before she closes her eyes again and just lays there rubbing me with a few fingers. Then she stops and I see tears and she is telling me she hurts but she will beat this, she is getting up and is going to come feed me. Wait Wait Wait what is this she hasn’t moved she is just staring into space. I know I shall pounce on her chest, nope that didn’t work either so I will lay on it until she says uncle and gets up. Well I laid there for 45 minutes and she didn’t move so I will go see if food has magically appeared and guess what it hasn’t.
Well it has been 2 days and going on 3 days of this stuff she calls Fibro, what does a cat have to do to get some relief here? What do people really think when they look at Lynn when she is like this? I mean well never mind when she is like this only me and Jim get to see her. Ok it has been 3 days and Jim fed me when he got home today but he doesn’t feed me like she does she makes funny little noises and talks to me like I am a little kid, Well me and Lynn had to have a heart to heart today, I played the physcologist and just laid there listening to her, I gave her the soft purr of encouragement so she would continue telling me how her feet have been staying numb and she is having issues with feelings in her arms. She doesn’t seem to be how she normally is so I think I shall have a conversation with Jim about her and see if he can help…. OHHHH well that didn’t go well I purred and purred, and even raised my voice and meowed at him and he just looked at me like I was crazy, I am not crazy I am the queen of this castle and I will be heard, so I meander myself back up the stairs,,ahh Lynn has her computer on, so she is alive I will go talk to her about this I bounce up on the bed and she is asleep with her hand on the keyboard, she has typed this word I have no clue what it is can someone help me and explain what this word is “ ssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss” ? She always seems to type words like that when she is in pain and is sleeping while on her computer but sometimes it is different letter then that. Well I hear Jim down stairs he is rummaging through the cabinets; he must be looking for food, so I will go see if I can get some treats from him. So I will leave you with some parting thoughts from a cats perspective, Fibro is real come stay for awhile in our house and you may be lucky enough to see the effects it has not only on Lynn, but on Jim and family, and me. Why does it seem we are no closer to a cure? I want to tank all of you for letting me share my life on here.
After thought:
No animals where harmed or malnourished in the writing of this letter, I took liberties with the no food because I don’t like Jim feeding me; it isn’t as much fun as when Lynn feeds me. And I do get fed 2 times a day, and I would probably be ok if I did go a few days with out a meal as my doctor tells me I am a little on the heavy side.
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