Elephants, Snapping Turtles and Frogs
From Lynn’s husband
I know what your thinking, Lynn’s blog and two post in as many days what’s going on
Well I find myself having a desire to write something again on Lynn’s Blog. I keep asking myself why and what am I looking for. Well I have come to the conclusion that I am looking for a way to maybe reach either the women with fibro and or there husbands to let them know two things. If you are a women hopefully when you read what a spouse says about his wife and dealing with this I hope you understand that we are by your side each and every step, or lack of steps each day, we don’t always show it as men but we are trying to stay strong for you and for ourselves. And for the husbands because I want you to know that this is a lonely disease, who do we have to talk to? I mean really how many of us can talk to our hunting buddies, work buddies, family, motorcycle friends, heck even a stranger and explain the pain we as spouses go through when you cant even hold your wife, how it feels when you want to do something and you have to hold back because the one you love is in pain, the guilt you feel when you go alone somewhere because you have to get out and do something or have made a commitment days before and you cant truly enjoy yourself because your worried that your wife is at home in bed hurting and when it is all said and done you are helpless…… I was raised by two great parents that taught me that as the man I am to cherish, protect and love my wife, well with fibro some days there is no way to protect her because I cant see the enemy.
I struggle with the idea of Terminal diseases, there is a bunch out there and I won’t pick or name one but think of them, and now think of the invisible disease what is the difference? I can tell you in my opinion which obviously is skewed Fibro is the worst of the bunch, maybe I would feel differently if Lynn had one of those diseases seeing that we own them once we get them. I have read some interesting articles in my research on fibromyalgia, I am an internet surfer, and I spend a few hours a week looking at the old news and new information trying to find links, ideas and maybe a little insight on what can be done to make my wife feel a bit better. The part that is scary is when you start to really delve deep into the research you find two things, there isn’t much out there in the form of new news, and what is out there isn’t very good. Can anyone tell me how much is being spent on Fibromyalgia research? Not drug developments but actual cash being spent to find the cure and the cause. The medical dictionary defines such:
Terminal illness
Etymology: L, terminalis + ON, illr, bad
An advanced stage of a disease with an unfavorable prognosis and no known cure.
If this is a the true medical definition why hasn’t the medical field defined fibromyalgia as a terminal disease after seeing my wife suffer with this disease I can honestly say it isn’t favorable, and there is no cure. So where is the research money?? Somebody please search it and let me know I can’t find that figure anywhere.
Ok now that I have ranted and have lost my direction back to the elephants, snapping turtles and frogs.
Why did I title this post in such a manor after that positive start?
Elephants:
This is the section on memory, fibro fog and just plain forgetting. I was asked to explain fibro fog to a friend so I took him out drinking. After 8 beers I had a deep conversation with him regarding fibromyalgia and what it is like to have a wife with fibromyalgia, I waited 3 days and then asked him some questions about our conversation, he said he thinks he could remember us talking about it but didn’t recall exactly what was said I told him welcome to a glimpse of fibro fog as I understand it. Well after 4 years of dealing with Lynn and her fibro fog I am convinced fibro fog is worse, we have conversations about the same subject 3 or 4 times within 2 hours some days and then she wonders why I become a snapping turtle, obviously she doesn’t listen to me, obviously she doesn’t care what my opinion is, obviously there really is no point in talking to her any more about said subject. I would bet a paycheck and I only get paid once a month that every husband that has a wife with fibro has had at least one of those thoughts after 4 of the same conversations. How many people have either said or heard the words “I am not losing my mind we didn’t discuss that”
Snapping Turtles:
Lynn alluded to the snapping turtles in her most recent post, she is hurting, she is tired she is in pain, and guess who gets snapped at? Well I know it isn’t really her snapping at me it is the frustration with everything and I am the closest thing to her so the turtle rears its head and SNAP. In the mist of the snap I do my best to try to figure quickly if this is a snap I should argue with or just let it go as it is a reaction to the fibromyalgia. I have found that after about 3 days of a constant flare I also have the snapping turtle syndrome, well what do you expect I am selfish and I want and want and when I can’t and I am having to live with the fibro I can become snappy too it isn’t a one way street. It’s only after the snaps that we sometimes stop to realize that it is just frustration and tiredness from not being able to have what people call a normal life any longer. Snapping turtle syndrome is a very dangerous thing to have in our lives as when we snap we usually say the ugliest meanest things and hurts and does the most damage, the old saying of “sticks and stones will break my bones but names will never hurt me” is the biggest lie we tell kids growing up. Bones heal but the names and the snaps are always remembered. As a spouse and as the person with fibro we sometimes forget that it isn’t us they are snapping at it is just a release of anger and it’s a release of anger directed in the wrong direction most times.
FROGS:
I named this frogs because Lynn is petrified of tree frogs, I mean she will run in a heart beat if she see’s one. Why frogs because frogs are normally creatures that are cute to look at but rarely do we want to reach out and carry one in our hands nor does the frog want us to bother with them. I think fibro has a frog mentality to it for both the of us, and here is what I mean there are days when Lynn doesn’t want me to touch her I don’t mean it in the husband wife sorta way I mean in the just plain out and out I don’t want to be touched, I don’t want my clothes touching me I don’t want your hand touching me I don’t want anything touching me…when she gets like this there is no touching I mean not even kisses they hurt the expel of energy hurts. So how does a husband deal with that, I mean its rejection isn’t it? Or is it? I mean I want to touch I want to kiss I want to hold hands, yes its rejection I know this for a fact it is…. I know its rejection but it isn’t a rejection of me it’s a rejection of I hurt and this will cause more pain. I personally struggle the most with frogs because I need and want the touch of Lynn. And Lynn wants the touch of me this is true torment when you can not freely love your partner any longer, it’s always prefaced with how are you feeling, can I hold you, can I get a kiss. The CAN I gets old it gets in the way it takes away the freedom to just love and touch it takes from us. If you and your spouse struggle with this there isn’t much I can say to be positive here other then we haven’t quit trying and you cant let the fibro beat you here I personally think this is one of the areas in which you should fight the hardest, this is the area I can say that most men struggle with the most, the loss of touch the feeling of being wanted is part of what makes a man a man, we are physical creatures its in our DNA.
Parting Shots:
Wasn’t sure where to end this blog and I don’t know how to spell epilogue. So I will end this with a few parting shots.
Elephants , Snapping Turtles, and tree Frogs, are just that they are ways to an end, they help us put into prospective that we all have them, they may be different animals and they may be different situations but if you are fighting Fibromyalgia you will have them the sooner we realize the animals in our zoo the sooner we can find ways to work with them.
I saw a hat on a lady this summer that said cancer survivor, to all the men and women reading this you may not be a survivor yet but you are surviving, may not seem like it today but everyday you can wear that badge of honor not as a survivor but as someone who is surviving……….
For those of you that have spouse and they need or would like to talk with someone who knows what its like to live with a spouse with this disease feel free to let them know and let lynn know. I dont have the answers but i know the life.
Love you spunky
Friday, September 24, 2010
Monday, September 20, 2010
Where has my mind been..... Trying to find myself!!
Wow, it has been over a month since I last blogged so I warn you this might be and probably will be somewhat lengthy and I am sure all over the place. One of the reasons for me not blogging for so long is that I have had sooooo much on my mind and just not sure how to put it into words. It is hard to start back up again once you stop for awhile, you want to get all your thoughts out at once.....
I am such a strong woman, I never realized how strong I really was until people stared telling me how good I look. What I mean by that is, I have recently lost 20 pounds. (10 more to go to my pre marriage weight :) I have been laying out ,( this is my time of the year, summer) so I have a tan. Plus laying out is so relaxing for me, distresses me, and the only time I can focus enough to read. SO BECAUSE I LOOK GOOD, I MUST FEEL GOOD, RIGHT? WRONG!!!!! That is where being a really strong woman comes in! More and more people have been saying that I hide my pain very well....First that is because when I am in alot of pain, I don't go out! People don't see me wake 2 or 3 hours earlier than I have to just to take my pain meds if I have to be somewhere. Then I still have to pray that my energy level will allow me to leave the house. People don't see that when I first wake up sometimes I can't even tell Jim I love him right away or roll over into his arms because my body is fighting against me and I have to fight back just to get it to move! People see me when I want them to see me, for the most part!!!
I was talking to a friend the other day and he was going on about his leg hurting and something else was hurting and I was giving him a hard time because he is "mr healthy" and he said but it has been like this for about a month now and it is really frustrating him and I just chuckled and said, I love you but I am the wrong one to look to for sympathy on this one. I wasn't being ugly, just said imagine the pain being there 24/7! I AM A STRONG WOMAN!!! I DEAL WITH MY PAIN 24 HOURS A DAY 7 DAYS A WEEK AND PEOPLE DON'T EVEN NOTICE, for the most part!!! There are days where I don't leave the house. There are days I leave the house and if it wasn't for Jim, I would never make it.....
I have been dealing with this pain for many years now and trust me, it has changed me in so many ways. I am definitely not the same woman I was when Jim met me, I am always apologizing to him for that too. Then again I am sooooo blessed to have met him and married him because I could NEVER do this alone! The good Lord knew this was to be my life. Boy, I wish he would have clued me in a little bit though....haha!
My pain has made me such an angry, bitter person with less patience than I used to have. I was never known for being on time but now because of my lovely friend called fibro I really fight against that battle. Which is so unfair for Jim when he has to sit around waiting for me. He is usually great about it. There are times it gets to him but that is to be expected. I used to love to smile and now I have frown lines on my face!! THAT REALLY PISSES ME OFF!!!
Jim, is so the man of my dreams, loving, kind, funny, patient, sexy, my best friend in every way! ( he is not perfect though :) and can drive me crazy!!!) I started falling in love with him the first day I met him..........
I hate that I take my pain out on him!!! I snap at him when he doesn't deserve it! I hate that we are late to places because my pain and energy just STOPPED me from getting ready! I hate that I want him to hold me and he can't sometimes. I hate to see the look of pain in his eyes because he wants to take all this away from me and he can't!!
I am such a strong woman, I never realized how strong I really was until people stared telling me how good I look. What I mean by that is, I have recently lost 20 pounds. (10 more to go to my pre marriage weight :) I have been laying out ,( this is my time of the year, summer) so I have a tan. Plus laying out is so relaxing for me, distresses me, and the only time I can focus enough to read. SO BECAUSE I LOOK GOOD, I MUST FEEL GOOD, RIGHT? WRONG!!!!! That is where being a really strong woman comes in! More and more people have been saying that I hide my pain very well....First that is because when I am in alot of pain, I don't go out! People don't see me wake 2 or 3 hours earlier than I have to just to take my pain meds if I have to be somewhere. Then I still have to pray that my energy level will allow me to leave the house. People don't see that when I first wake up sometimes I can't even tell Jim I love him right away or roll over into his arms because my body is fighting against me and I have to fight back just to get it to move! People see me when I want them to see me, for the most part!!!
I was talking to a friend the other day and he was going on about his leg hurting and something else was hurting and I was giving him a hard time because he is "mr healthy" and he said but it has been like this for about a month now and it is really frustrating him and I just chuckled and said, I love you but I am the wrong one to look to for sympathy on this one. I wasn't being ugly, just said imagine the pain being there 24/7! I AM A STRONG WOMAN!!! I DEAL WITH MY PAIN 24 HOURS A DAY 7 DAYS A WEEK AND PEOPLE DON'T EVEN NOTICE, for the most part!!! There are days where I don't leave the house. There are days I leave the house and if it wasn't for Jim, I would never make it.....
I have been dealing with this pain for many years now and trust me, it has changed me in so many ways. I am definitely not the same woman I was when Jim met me, I am always apologizing to him for that too. Then again I am sooooo blessed to have met him and married him because I could NEVER do this alone! The good Lord knew this was to be my life. Boy, I wish he would have clued me in a little bit though....haha!
My pain has made me such an angry, bitter person with less patience than I used to have. I was never known for being on time but now because of my lovely friend called fibro I really fight against that battle. Which is so unfair for Jim when he has to sit around waiting for me. He is usually great about it. There are times it gets to him but that is to be expected. I used to love to smile and now I have frown lines on my face!! THAT REALLY PISSES ME OFF!!!
Jim, is so the man of my dreams, loving, kind, funny, patient, sexy, my best friend in every way! ( he is not perfect though :) and can drive me crazy!!!) I started falling in love with him the first day I met him..........
I hate that I take my pain out on him!!! I snap at him when he doesn't deserve it! I hate that we are late to places because my pain and energy just STOPPED me from getting ready! I hate that I want him to hold me and he can't sometimes. I hate to see the look of pain in his eyes because he wants to take all this away from me and he can't!!
I hate that we fight because of my fibro....yes, MY fibro because I wouldn't want to give it to anyone else!! I WOULD LOVE to get rid of it though!!!!!
I am so very excited to be starting Tia Chi at the first of October with my husband :) I have heard so many good things about it helping fibro and having Jim with me is an extra bonus. Having Jim working out and encouraging me when I don't want to keep going is what keeps me going.
In the past month I have learnt that people are not who they say they are...:( People want you to think they are one way and they try and put on a front, then boom they show their real colors!! I don't have time for people like that in my life......
In the past month I have learnt that I want my own jeep!!! Jim and I saved enough and got us a 2005 Jeep. At first I was a little unsure about it because I know how Jim loves his trucks but now I am so happy he went with the Jeep. I am calling it my "Harley"! Riding around with the top off, the sun on me and the wind in my hair with the music playing, WOW it is AWESOME!! We got a Jeep parts catalog and to me it is like the old Sears Christmas Wish Book. I got thru it page by page....one day I will have my own. For now, Jim is letting me drive it to the beach next week...:)
This past month I have started getting ready for the winter months, I feel kinda like a bear getting ready for hibernation. Last winter was one of the worst of my life.....and I don't want a repeat!!!
Since my reunion, I have been keeping in touch with everyone and we are planning to get together again next year...:)
My pain level has been up and down as usual...my mornings suck!! I hate them!!! The first 2/3 hours of my day take so much out of me.......Most pain levels are done on a scale of 1 - 10, well mine goes up into the 100's sometimes!! My energy level can be nonexistent!!! I am now losing my hair (I don't have alot to begin with) my right wrist is in constant pain. I still have all the fun pains of my legs, ankles, hips, back, shoulders, neck and my head!!!! My IBS still keeps me weighing an extra 5 pounds every day and looking like I am 6 months pregnant. My IC is always there. So yes, my fibro is still with me and not showing any signs of leaving any time soon! O'yea my memory is getting way worse....spelling forget it!!!! All I can say is thank goodness for spell check!!!! And fibro fog IS REAL and living in my brain!!!
Well I am typing this with my eyes half closed so I say good night and sweet dreams.
Tuesday, August 3, 2010
Not where I thought I would be?
Well our vacation ended way much better than it started. When we first got to the beach, I spent the first 2 days laying on the couch in so much pain I just wanted to take extra pain pills, curl up in a ball and wake up 4/5 days later. (just in time for the reunion) The next couple days after that were tough but I survived...it was really tough on Jim! I hate that so much, not only does my life suffer but his does as well and he didn't ask for this. He tries so hard to be patient and understanding (and does an awesome job) but it is still not easy for him!! He wants to go and do things, enjoy the beach and I am laying around....how do I deal with the guilt?
I ended up going to CVS and getting a muscle relaxer filled on top of my pain pills I had brought with me. I even talked to the pharmacist and was asking her for anything that would take away the pain.....it didn't help I just had to wait it all out!
I have friends that I love dearly that live at the beach that I want to see and spend time with but find myself hiding out when I get there. I want to call them and spend time with them so bad but do they really want to come over and spend the day laying around on the couch...I don't always want to talk. I want to see them but how do I explain ALL this to them??? How do I make plans and then have to cancel at the last minute??? They are used to the type A personality times 3!! I worked with some of the most wonderful ladies and love them dearly and consider them lifelong friends but hate that I can't be what they remember....Stephanie, Karen and Heather I love you!! 20 years of friendship...:)
Friday got there and everyone started to arrive for the reunion :) Friends that I have known for 34 years, we went to middle school together. I was lucky enough growing up to be a military BRAT. My father was in the Air Force and was stationed in Holland from 1973 - 1976 (not sure of the year we got there but I know we left in June of 76) While I was lucky enough to live there I was even luckier to make friends for life!!! Donna and Kathy I will always be there for you!! I was looking at every one's faces this past Saturday night and we still look the same.....we were such a close knit group. Not everyone could make it though and we are hoping to do a big reunion in 2013 back in Holland so maybe just maybe everyone can come. I really don't want to wait until then though to get back together with everyone, I think we should make the beach an annual trip...just a thought!!
I was so afraid that my pain and CFS would stop me from enjoying myself and I thank GOD for a very low pain weekend!! My friends know and were understanding of my limitations but I didn't want that to be a "part" of this weekend and it wasn't!! I was even able to go disco dancing for a little bit Saturday night.
I am on the other hand paying for it all now.....have NO energy, laying around doing nothing and I want to do something!!! I want to go to the gym, the grocery store....
My body is saying hahahahaha, not going to happen! You are going to do what I say!!!!
My yard has never looked as bad as is does right now....I walk outside or should I say trudge outside and get even more depressed. I used to be the WEED QUEEN! What I mean is I would be out there pulling weeds everyday just for the fun of it. It is a great for stress and it is so overwhelming to me right now....I used to have a vegetable garden and flower bed now it just looks like crap!!!!!!!!!!!! I used to at least have the energy to work an hour outside and for the past 2 months it just hasn't happened. I am overwhelmed by everything that needs to be done to our house!!! My rose bushes look terrible.....:(
I do find it funny but not funny because I know/believe they are linked together but my stomach is acting up at the same time??? HUUUMMM????I feel like I have a pump in my stomach blowing me up and it just plain ol hurts!! My bladder (IC) is acting up too!! Just my body/fibro saying, ok you had your fun now you are mine again! WELL DAMMIT, I DON'T WANT TO LET IT WIN!!!! I am going to do a little bit each day and slowly get back to feeling a little better. If I can just get myself to the Y for 20 mins on the bike or to a yoga class I know it will help! PLEASE GOD HELP ME!!!! I do know I cannot eat sugar.....fried foods and I did eat both this past week. I knew better but did it anyway. Dunkin Doughnuts was so good!!!
Looking back at the reunion and thinking back to the 70's.....I NEVER THOUGHT I WOULD BE WHO I AM TODAY!!!!!
I ended up going to CVS and getting a muscle relaxer filled on top of my pain pills I had brought with me. I even talked to the pharmacist and was asking her for anything that would take away the pain.....it didn't help I just had to wait it all out!
I have friends that I love dearly that live at the beach that I want to see and spend time with but find myself hiding out when I get there. I want to call them and spend time with them so bad but do they really want to come over and spend the day laying around on the couch...I don't always want to talk. I want to see them but how do I explain ALL this to them??? How do I make plans and then have to cancel at the last minute??? They are used to the type A personality times 3!! I worked with some of the most wonderful ladies and love them dearly and consider them lifelong friends but hate that I can't be what they remember....Stephanie, Karen and Heather I love you!! 20 years of friendship...:)
Friday got there and everyone started to arrive for the reunion :) Friends that I have known for 34 years, we went to middle school together. I was lucky enough growing up to be a military BRAT. My father was in the Air Force and was stationed in Holland from 1973 - 1976 (not sure of the year we got there but I know we left in June of 76) While I was lucky enough to live there I was even luckier to make friends for life!!! Donna and Kathy I will always be there for you!! I was looking at every one's faces this past Saturday night and we still look the same.....we were such a close knit group. Not everyone could make it though and we are hoping to do a big reunion in 2013 back in Holland so maybe just maybe everyone can come. I really don't want to wait until then though to get back together with everyone, I think we should make the beach an annual trip...just a thought!!
I was so afraid that my pain and CFS would stop me from enjoying myself and I thank GOD for a very low pain weekend!! My friends know and were understanding of my limitations but I didn't want that to be a "part" of this weekend and it wasn't!! I was even able to go disco dancing for a little bit Saturday night.
I am on the other hand paying for it all now.....have NO energy, laying around doing nothing and I want to do something!!! I want to go to the gym, the grocery store....
My body is saying hahahahaha, not going to happen! You are going to do what I say!!!!
My yard has never looked as bad as is does right now....I walk outside or should I say trudge outside and get even more depressed. I used to be the WEED QUEEN! What I mean is I would be out there pulling weeds everyday just for the fun of it. It is a great for stress and it is so overwhelming to me right now....I used to have a vegetable garden and flower bed now it just looks like crap!!!!!!!!!!!! I used to at least have the energy to work an hour outside and for the past 2 months it just hasn't happened. I am overwhelmed by everything that needs to be done to our house!!! My rose bushes look terrible.....:(
I do find it funny but not funny because I know/believe they are linked together but my stomach is acting up at the same time??? HUUUMMM????I feel like I have a pump in my stomach blowing me up and it just plain ol hurts!! My bladder (IC) is acting up too!! Just my body/fibro saying, ok you had your fun now you are mine again! WELL DAMMIT, I DON'T WANT TO LET IT WIN!!!! I am going to do a little bit each day and slowly get back to feeling a little better. If I can just get myself to the Y for 20 mins on the bike or to a yoga class I know it will help! PLEASE GOD HELP ME!!!! I do know I cannot eat sugar.....fried foods and I did eat both this past week. I knew better but did it anyway. Dunkin Doughnuts was so good!!!
Looking back at the reunion and thinking back to the 70's.....I NEVER THOUGHT I WOULD BE WHO I AM TODAY!!!!!
Tuesday, July 20, 2010
What do I write about today?
Do I write about getting a call from our lawyer today about something we thought was all taken care of and come to find out wasn't? That my stress level went thru the roof and my body then went into overload!!!
Do I write about going broke trying to keep me in meds and natural supplements. On the chance and a prayer that if I take them they will help me get thru the day!! I mean come on, someone please tell me why COQ10 is so freakin expensive??? And if it is supposed to help me with energy then how long do I have to wait for it to work?? And is it really going to help me....we will see????? Of course I have to fight the urge to sit around and do nothing!! I have to make my body move....FOR ONCE I WOULD LOVE TO NOT HAVE TO FORCE MYSELF TO MOVE!! I WANT TO BE ABLE TO RUN AROUND AND PLAY....
Jim was just wanting to be playful last night and I just didn't.....just tickle me. I HATE BEING SICK!!!!!!!!!!!!!!!!!!!!!! People just don't get it!!!!
Do I write about crying thru out the day at the drop of a hat? Do I write about how I need a purpose to my days? I wake up and really don't have much to do but then again what can I do? What can I plan to do other than just get thru my day? My purpose right now is to try and be a little bit like the old me every day. Try to be as "normal" as possible.....not even sure I know what that is :)
My thing lately has been not knowing what to do with myself. I hate that I cannot be more productive...
I hate the way my body feel when I wake up in the morning. After a restless nights sleep (usually wake up several times due to pain in my back, hips and my stomach) it feels like every nerve in my body is on fire and hurts! It is really kinda hard to explain but I HATE it!! I almost don't want to get up but I can't stand laying there either!! I know if I do I can take my meds and will start to feel better . What I mean by feel better is, the "funky" feeling will go away!! The first hour, hour and a half of my morning is hell for me!!!
I know this is awful of me to say but there are certain people that I wish would have to live 2 weeks in my shoes!! Just be living their lives and then all of a sudden BOOM.... Just 2 weeks because I wouldn't wish this on anyone for a lifetime...it is a life sentence of pain and life changing fatigue. They talk about me behind my back and don't think I know....act as though they are concerned when really they think I am full of bull and could be working and should be working!! That I let myself get into the situation I am in by choice!!!!!! Don't be fake!!!! I know this person better than they realize I do!!!!
I JUST WANT TO FEEL LIKE THE OLD ME......SOOOO BAD!!!!!!!!
Do I write about going broke trying to keep me in meds and natural supplements. On the chance and a prayer that if I take them they will help me get thru the day!! I mean come on, someone please tell me why COQ10 is so freakin expensive??? And if it is supposed to help me with energy then how long do I have to wait for it to work?? And is it really going to help me....we will see????? Of course I have to fight the urge to sit around and do nothing!! I have to make my body move....FOR ONCE I WOULD LOVE TO NOT HAVE TO FORCE MYSELF TO MOVE!! I WANT TO BE ABLE TO RUN AROUND AND PLAY....
Jim was just wanting to be playful last night and I just didn't.....just tickle me. I HATE BEING SICK!!!!!!!!!!!!!!!!!!!!!! People just don't get it!!!!
Do I write about crying thru out the day at the drop of a hat? Do I write about how I need a purpose to my days? I wake up and really don't have much to do but then again what can I do? What can I plan to do other than just get thru my day? My purpose right now is to try and be a little bit like the old me every day. Try to be as "normal" as possible.....not even sure I know what that is :)
My thing lately has been not knowing what to do with myself. I hate that I cannot be more productive...
I hate the way my body feel when I wake up in the morning. After a restless nights sleep (usually wake up several times due to pain in my back, hips and my stomach) it feels like every nerve in my body is on fire and hurts! It is really kinda hard to explain but I HATE it!! I almost don't want to get up but I can't stand laying there either!! I know if I do I can take my meds and will start to feel better . What I mean by feel better is, the "funky" feeling will go away!! The first hour, hour and a half of my morning is hell for me!!!
I know this is awful of me to say but there are certain people that I wish would have to live 2 weeks in my shoes!! Just be living their lives and then all of a sudden BOOM.... Just 2 weeks because I wouldn't wish this on anyone for a lifetime...it is a life sentence of pain and life changing fatigue. They talk about me behind my back and don't think I know....act as though they are concerned when really they think I am full of bull and could be working and should be working!! That I let myself get into the situation I am in by choice!!!!!! Don't be fake!!!! I know this person better than they realize I do!!!!
I JUST WANT TO FEEL LIKE THE OLD ME......SOOOO BAD!!!!!!!!
Friday, July 16, 2010
hip pain
Well I went to my fibro doctor yesterday and now have some new "natural" supplements to try. Nothing exciting but to me anything that will help is a blessing...I am going to be increasing my magnesium milate by 1000 mg and am starting coq10. Something I did not know but my doctor wants me to start taking an aspirin a night before I go to bed, she says it will help with my memory. There is a certain one she told me to take but I will have to post which one it is later because the paper is downstairs and my pain meds have not kicked in yet. My memory has gotten soooo bad!!!!
One thing we talked about while I was there was my hip pain so I got a cortisone shot in my left hip. I am so glad I didn't get one in my right hip like I was going to ask for....because about 1:30 this morning I woke up the pain was so bad!!! I laid there trying to move and not make to much noise ( I didn't want Jim to hear me crying) I finally had to wake Jim up and ask him to get my heating pad out for me. I have not had pain like that since I was a little girl and we lived in England. (if my mom reads this, she will know what i am talking about) It was terrible...my mom just had hip replacement surgery and i only hope and pray that i never have to go thru that. If the pain is anything like it was last night, O my goodness!!! My mom is such a strong woman!!!!
I have got to get motivated!!! I don't know what is going on with me??? I just can't seem to get anything done. Usually I can wash clothes, dry them and put them away in the same day...not anymore it seems. :) I feel lately as though I have no purpose anymore. Since I got sick and had to quit working I have tried to come to terms with all this and still haven't, I wonder if I ever will? I mean how many times can I clean the house? How many times can I work in the yard? And then when I do do those things it takes me all day to do a quarter of what I used to be able to do! Does that make sense??? Then when I do something, after I am done I need to lay down for awhile to recoup some energy to finish my day. I mean a 46 1/2 year old having to take a nap every afternoon, come on now.....I thought I got to stop doing that when I left grade school :)
I don't know lately I have just been wondering what there is out there for me to do? I used to work no less than 50/55 hour work weeks, usually with no less than 10 to 15 hours of travel time included. I was a district manager for 15 years then when I got married to Jim and moved to Greensboro I switched jobs and became a manager. With that job I worked on average 50 hours a week too.
When I first got sick there was NO WAY I would/could even think about working 10 minutes in a day. Now some days I feel as though I could work for an hour here one day then maybe an hour here another day. Not necessarily work, maybe volunteer somewhere. I just want to do something have a purpose. I mean 1 day I feel like I could work 1 hour then the next forget it!! Or if I make plans to do something with someone whether it be the next day or the next week I have to pray that I can do it!! My body changes from one minute to the next on what it will allow me to do!!!! I know I am just rambling on again as I usually do...it's just where my mind has been!
I am starting back to the Y!!! Since I have this time on my hands I am going to use it to get some of my "loose" skin to tightened up. The old fashioned way.....It will probably take me a couple years to do it but I am going to do it.....
One thing we talked about while I was there was my hip pain so I got a cortisone shot in my left hip. I am so glad I didn't get one in my right hip like I was going to ask for....because about 1:30 this morning I woke up the pain was so bad!!! I laid there trying to move and not make to much noise ( I didn't want Jim to hear me crying) I finally had to wake Jim up and ask him to get my heating pad out for me. I have not had pain like that since I was a little girl and we lived in England. (if my mom reads this, she will know what i am talking about) It was terrible...my mom just had hip replacement surgery and i only hope and pray that i never have to go thru that. If the pain is anything like it was last night, O my goodness!!! My mom is such a strong woman!!!!
I have got to get motivated!!! I don't know what is going on with me??? I just can't seem to get anything done. Usually I can wash clothes, dry them and put them away in the same day...not anymore it seems. :) I feel lately as though I have no purpose anymore. Since I got sick and had to quit working I have tried to come to terms with all this and still haven't, I wonder if I ever will? I mean how many times can I clean the house? How many times can I work in the yard? And then when I do do those things it takes me all day to do a quarter of what I used to be able to do! Does that make sense??? Then when I do something, after I am done I need to lay down for awhile to recoup some energy to finish my day. I mean a 46 1/2 year old having to take a nap every afternoon, come on now.....I thought I got to stop doing that when I left grade school :)
I don't know lately I have just been wondering what there is out there for me to do? I used to work no less than 50/55 hour work weeks, usually with no less than 10 to 15 hours of travel time included. I was a district manager for 15 years then when I got married to Jim and moved to Greensboro I switched jobs and became a manager. With that job I worked on average 50 hours a week too.
When I first got sick there was NO WAY I would/could even think about working 10 minutes in a day. Now some days I feel as though I could work for an hour here one day then maybe an hour here another day. Not necessarily work, maybe volunteer somewhere. I just want to do something have a purpose. I mean 1 day I feel like I could work 1 hour then the next forget it!! Or if I make plans to do something with someone whether it be the next day or the next week I have to pray that I can do it!! My body changes from one minute to the next on what it will allow me to do!!!! I know I am just rambling on again as I usually do...it's just where my mind has been!
I am starting back to the Y!!! Since I have this time on my hands I am going to use it to get some of my "loose" skin to tightened up. The old fashioned way.....It will probably take me a couple years to do it but I am going to do it.....
Thursday, July 15, 2010
Good morning
I have not blogged in awhile....how do I follow what my husband wrote??
First let me say, I didn't think it was possible to love my husband any more than I did, WRONG!!! I fall more in love with Jim everyday!! Everything he wrote was sooo true. It was a huge eye opener for me and since he wrote it I am happy to report we have danced in the kitchen 3 times and have layed on the SAME couch together several times. :)
Having fibro sucks beyond anything I can imagine and I never thought I would be dealing with a life of pain but God soo blessed me with Jim. I could not do this without him!!!!
I am sorry I am not blogging as much lately as I should be, just not feeling like it. I have become so lazy this past month! I have got to get out of it!! I am gaining weight and I am hating it!! I feel my body getting thick again and I am starting to eat more!!!!!!!!!!!!
I went to my female doctor 2 weeks ago and found out that my testosterone level was wayyyyy low so I am now using a little testosterone gel and I am so afraid that it is what is making me feel thick. When actually it is me not working out, me not walking!! I am being lazy!! I have got to get active!!! I cannot sit around!!! Please someone give me a swift kick in the butt!!!!
OK AS OF RIGHT NOW I AM GOING TO NOT BE LAZY!! I AM GOING TO GET UP AND BE ACTIVE!!! I AM GOING TO DO 30 MINUTES OF EXERCISE A DAY!!!
I worked too hard to loose this weight and have 13/15 pounds more to go and AM going to loose it!!! So NO more excuses.....just because I have CFS, I can still do this!!!! RIGHT???? I am trying to pump myself up....:)
So I am going to get up.....bye
First let me say, I didn't think it was possible to love my husband any more than I did, WRONG!!! I fall more in love with Jim everyday!! Everything he wrote was sooo true. It was a huge eye opener for me and since he wrote it I am happy to report we have danced in the kitchen 3 times and have layed on the SAME couch together several times. :)
Having fibro sucks beyond anything I can imagine and I never thought I would be dealing with a life of pain but God soo blessed me with Jim. I could not do this without him!!!!
I am sorry I am not blogging as much lately as I should be, just not feeling like it. I have become so lazy this past month! I have got to get out of it!! I am gaining weight and I am hating it!! I feel my body getting thick again and I am starting to eat more!!!!!!!!!!!!
I went to my female doctor 2 weeks ago and found out that my testosterone level was wayyyyy low so I am now using a little testosterone gel and I am so afraid that it is what is making me feel thick. When actually it is me not working out, me not walking!! I am being lazy!! I have got to get active!!! I cannot sit around!!! Please someone give me a swift kick in the butt!!!!
OK AS OF RIGHT NOW I AM GOING TO NOT BE LAZY!! I AM GOING TO GET UP AND BE ACTIVE!!! I AM GOING TO DO 30 MINUTES OF EXERCISE A DAY!!!
I worked too hard to loose this weight and have 13/15 pounds more to go and AM going to loose it!!! So NO more excuses.....just because I have CFS, I can still do this!!!! RIGHT???? I am trying to pump myself up....:)
So I am going to get up.....bye
Monday, July 5, 2010
A Husbands Perspective
A Husbands perspective
I had promised I would write a post a long time ago but really have fought against the whole idea for a few reasons, 1st this is Lynns blog for what she lives with daily, 2nd not sure what or how I will say what I want to say, hard to believe I know seeing that I am never at a loss for words. Recently Lynn has asked my a few times why I never post on her blog or make comments, I usually answer her with its your blog and I just talk to you about it so why write something, yes I know it’s a typical husband answer. So I am writing this for Lynn to all the women with fibro/cfs who follow this maybe it will give you some insight to what your spouse go though,, maybe is the key word there. I am going to try to touch on the psychological, physical, and social, I hope this isn’t to long of a post but should provide an insight
Psychological-
People ask me all the time how Lynn is doing? Lynn touched on this earlier in her blog weeks if not months ago about what do you say to that question, and then I ask myself do I really want people asking me this? How do I answer not that they don’t care but selfishly I don’t want to have to deal with the truth or have to lie to them, usually I say so-so , but is that really a truthful answer? Maybe some days it is but it is now my mantra to people who I don’t see on a daily/regular basis and sometimes to those who I do see daily.
This disease has stressed the family unit beyond belief, we are staying strong, but it is difficult when you try to hold the one you love and you cant touch them because of the pain, you try to talk and you get snapped at for no reason other then they are in pain. Trying to rectify in my mind, is this because of the fibro or is this her? Yes there is a difference between the fibro and her. A typical perfect day would be to come home from work walk in the door, smell dinner cooking, give my wife a kiss, talk about the day or plans for the weekend, you know real communication, maybe even a hug and a slow dance as we would chat. Yes this is real I used to love coming home and dancing in the kitchen joking around with each other. We would eat dinner together and play jeopardy on TV (I always win). We would take the dog for a walk come home share a chair and watch some TV. There was communication, Romance, humor, a passion for our future together. We would go to friend’s houses, they would come to ours. We would go for motorcycle rides and trips,, life was an adventure. Now present day home life, I call say what’s for dinner around 3ish, usually told something good, I get home and Lynn is in bed taking a nap or just laying down because she is hurting, I go down stairs start the dinner (two problems with this, 1st Lynn then feels bad because she isn’t doing it, 2nd I get frustrated because I am having to (I know this sounds unreasonable but I can be selfish as I stated earlier)). Ok dinner is done,, we sorta watch jeopardy as I ask how the day was, bad question because she doesn’t want to complain so she tells me so-so,, there is a lot of so-so’s going around these days, I try to hug or kiss her and I cant or its just a peck because the pain level is to high, she tries to play like nothing is wrong and now I am on pins and needle. We now sit on separate couches and when it’s close to bed time Lynn is in pain so she is up and moving around trying not to focus on the pain, which then leads me to always ask the question,,, can anyone guess?? Nope,, that wasn’t it, it is why do you have the energy to do stuff at the end of the evening and don’t have energy for me,, yes I know I know I am bad for asking, but I think if you ask any husband whose wife has this disease they will tell you we are suffering with the pain along with the wife, we may not feel the physical pain but we deal with the emotional drag it has on our relationship, we have to put our wants and desires on the back burner. I am now afraid to take Lynn on a motorcycle ride because the last time we went I had to keep my arm wrapped around her to make sure when she fell asleep that she wouldn’t fall off,, try riding at 70mph one handed with the occasional twitch of the person behind falling asleep, never thought of it until now but I guess we still do have adventure in our life, so if you ever read in a paper that someone fell of a bike at 70mph call and check on her to make sure it wasn’t her. Just playing we actually make a lot more stops and do shorter stints on the bike when we ride now, sorry Marge and Bill couldn’t resist.
Physical-
What to say here I have no clue at the moment, physically she feels she is a mess no matter how pretty and sexy I say she is she tells me I am wrong, we are in a constant battle to do things, as in she wants to do things but when the time comes the energy or pain out ways the desire. Physically I am what most would call healthy, I am a go getter (most of the time) I am on the move I want to go play. But I now have to fight my desires to do stuff because of the fact that I don’t want Lynn to feel worse then she already does, this usually back fires because she knows I want to go, so then she feels worse because she cant.
Social-
how has life changed socially, we would go to a nice dinner, hang out with friends and do things, now we no longer make commitments, or we make so-so commitments you know the kind,, not the ones where you make it and break it if something better comes along, we don’t do those, we do the kind where we say to the friends yeah we are in for that, “BUT” it will all depend on how Lynn is doing that day. I cant remember a time when we have been early, I know most who know Lynn will say she was never early before she got sick, but the difference is now she wants to be and beats herself up because she cant get her body moving, she needs a 15 minute naps. Yes this is frustrating I have actually once or twice gone on with out her and had her catch up, I’m still trying to figure out if that is the best way to handle a situation like that because I worry about her and stress because she hasn’t made it yet,, or I stay home and get impatient asking how much longer every 2 minutes but I swear it feel like a lifetime when I am waiting. We rarely do friend things like we used to most days are spent at home, being reclusive. It weighs on our friends because they honestly love Lynn unconditionally but they have no clue what its like, they can read and read,, there is a bunch out there about fibro the problem is most of it is hogwash ( like how I refrained from cursing). And because they care we have a bunch of doctors who have solutions,, some are pretty good and I have taken the advice of one and have found that beer does help. Maybe just helps me but then again this is a post of what I live through,,LOL.
Ok to sum it up in no uncertain words, Life with Fibro stinks, but life with Lynn is awesome. We are blessed in more ways then we can even begin to count and that is what we try to stay focused on. Though this disease has taken things from us, God has also used this disease to bring us closer together. If this would have happened when I was younger I can honestly say that as a spouse I am not sure I could have been loving and supportive. I know when people read this they may not understand. And for all the spouses who read this remember one thing and hold tight to this one item please,,,, The women you fell in Love with is still there and I can assure you she wants to be back to who she was, and she is who she was before she got this disease, you may have to remind them of that from time to time.
Last parting words to Lynn when you read this, Please understand that with all that was written above I Love You and you are not Fibro, you are beautiful strong women I will always stand beside you and I will always carry you when you need to be carried. You are an inspiration to many people and a blessing to those who know you. I am honored to call you my wife.
Jim
p.s.
As a famous writer once put it: From there to here, and here to there, funny things are everywhere.
I had promised I would write a post a long time ago but really have fought against the whole idea for a few reasons, 1st this is Lynns blog for what she lives with daily, 2nd not sure what or how I will say what I want to say, hard to believe I know seeing that I am never at a loss for words. Recently Lynn has asked my a few times why I never post on her blog or make comments, I usually answer her with its your blog and I just talk to you about it so why write something, yes I know it’s a typical husband answer. So I am writing this for Lynn to all the women with fibro/cfs who follow this maybe it will give you some insight to what your spouse go though,, maybe is the key word there. I am going to try to touch on the psychological, physical, and social, I hope this isn’t to long of a post but should provide an insight
Psychological-
People ask me all the time how Lynn is doing? Lynn touched on this earlier in her blog weeks if not months ago about what do you say to that question, and then I ask myself do I really want people asking me this? How do I answer not that they don’t care but selfishly I don’t want to have to deal with the truth or have to lie to them, usually I say so-so , but is that really a truthful answer? Maybe some days it is but it is now my mantra to people who I don’t see on a daily/regular basis and sometimes to those who I do see daily.
This disease has stressed the family unit beyond belief, we are staying strong, but it is difficult when you try to hold the one you love and you cant touch them because of the pain, you try to talk and you get snapped at for no reason other then they are in pain. Trying to rectify in my mind, is this because of the fibro or is this her? Yes there is a difference between the fibro and her. A typical perfect day would be to come home from work walk in the door, smell dinner cooking, give my wife a kiss, talk about the day or plans for the weekend, you know real communication, maybe even a hug and a slow dance as we would chat. Yes this is real I used to love coming home and dancing in the kitchen joking around with each other. We would eat dinner together and play jeopardy on TV (I always win). We would take the dog for a walk come home share a chair and watch some TV. There was communication, Romance, humor, a passion for our future together. We would go to friend’s houses, they would come to ours. We would go for motorcycle rides and trips,, life was an adventure. Now present day home life, I call say what’s for dinner around 3ish, usually told something good, I get home and Lynn is in bed taking a nap or just laying down because she is hurting, I go down stairs start the dinner (two problems with this, 1st Lynn then feels bad because she isn’t doing it, 2nd I get frustrated because I am having to (I know this sounds unreasonable but I can be selfish as I stated earlier)). Ok dinner is done,, we sorta watch jeopardy as I ask how the day was, bad question because she doesn’t want to complain so she tells me so-so,, there is a lot of so-so’s going around these days, I try to hug or kiss her and I cant or its just a peck because the pain level is to high, she tries to play like nothing is wrong and now I am on pins and needle. We now sit on separate couches and when it’s close to bed time Lynn is in pain so she is up and moving around trying not to focus on the pain, which then leads me to always ask the question,,, can anyone guess?? Nope,, that wasn’t it, it is why do you have the energy to do stuff at the end of the evening and don’t have energy for me,, yes I know I know I am bad for asking, but I think if you ask any husband whose wife has this disease they will tell you we are suffering with the pain along with the wife, we may not feel the physical pain but we deal with the emotional drag it has on our relationship, we have to put our wants and desires on the back burner. I am now afraid to take Lynn on a motorcycle ride because the last time we went I had to keep my arm wrapped around her to make sure when she fell asleep that she wouldn’t fall off,, try riding at 70mph one handed with the occasional twitch of the person behind falling asleep, never thought of it until now but I guess we still do have adventure in our life, so if you ever read in a paper that someone fell of a bike at 70mph call and check on her to make sure it wasn’t her. Just playing we actually make a lot more stops and do shorter stints on the bike when we ride now, sorry Marge and Bill couldn’t resist.
Physical-
What to say here I have no clue at the moment, physically she feels she is a mess no matter how pretty and sexy I say she is she tells me I am wrong, we are in a constant battle to do things, as in she wants to do things but when the time comes the energy or pain out ways the desire. Physically I am what most would call healthy, I am a go getter (most of the time) I am on the move I want to go play. But I now have to fight my desires to do stuff because of the fact that I don’t want Lynn to feel worse then she already does, this usually back fires because she knows I want to go, so then she feels worse because she cant.
Social-
how has life changed socially, we would go to a nice dinner, hang out with friends and do things, now we no longer make commitments, or we make so-so commitments you know the kind,, not the ones where you make it and break it if something better comes along, we don’t do those, we do the kind where we say to the friends yeah we are in for that, “BUT” it will all depend on how Lynn is doing that day. I cant remember a time when we have been early, I know most who know Lynn will say she was never early before she got sick, but the difference is now she wants to be and beats herself up because she cant get her body moving, she needs a 15 minute naps. Yes this is frustrating I have actually once or twice gone on with out her and had her catch up, I’m still trying to figure out if that is the best way to handle a situation like that because I worry about her and stress because she hasn’t made it yet,, or I stay home and get impatient asking how much longer every 2 minutes but I swear it feel like a lifetime when I am waiting. We rarely do friend things like we used to most days are spent at home, being reclusive. It weighs on our friends because they honestly love Lynn unconditionally but they have no clue what its like, they can read and read,, there is a bunch out there about fibro the problem is most of it is hogwash ( like how I refrained from cursing). And because they care we have a bunch of doctors who have solutions,, some are pretty good and I have taken the advice of one and have found that beer does help. Maybe just helps me but then again this is a post of what I live through,,LOL.
Ok to sum it up in no uncertain words, Life with Fibro stinks, but life with Lynn is awesome. We are blessed in more ways then we can even begin to count and that is what we try to stay focused on. Though this disease has taken things from us, God has also used this disease to bring us closer together. If this would have happened when I was younger I can honestly say that as a spouse I am not sure I could have been loving and supportive. I know when people read this they may not understand. And for all the spouses who read this remember one thing and hold tight to this one item please,,,, The women you fell in Love with is still there and I can assure you she wants to be back to who she was, and she is who she was before she got this disease, you may have to remind them of that from time to time.
Last parting words to Lynn when you read this, Please understand that with all that was written above I Love You and you are not Fibro, you are beautiful strong women I will always stand beside you and I will always carry you when you need to be carried. You are an inspiration to many people and a blessing to those who know you. I am honored to call you my wife.
Jim
p.s.
As a famous writer once put it: From there to here, and here to there, funny things are everywhere.
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