Monday, November 29, 2010

the face of fibromyalgia

I cannot believe I am posting these pictures of me but this is what I look like when I have been hurting all day....not very nice is it??? Yes, I am smiling in one of the pictures because I don't like looking so mean/mad!
Not the picture of me with my husband of course, just wanted you to see the difference....

That time of year - when you find out who your true friends are!

Today and last night have been the worst pain day for me in probably over a year. I mean I have had some major pain days but it would peak and then would go down to a somewhat manageable level for the most part.I wake up and it takes me a couple hours to be able to get going and some days I go faster than others but I am able to go. I usually have a mid afternoon slowdown but for the most part my pain level will peak and then level....again some days it will peak longer than others but not for over 24hours! That is what I am dealing with now!!
My pain started when we left the beach yesterday to head the way, really enjoyed spending time with my parents and daughter. My nephew Eddie is all boy!!! I love it when he comes into my room in the morning and looks at me with a sweet smile and says cartoons. Of course I put them on and then he snuggles in bed with me.....little does he know that I love it because I get to lay there and snuggle with him.....nothing like that first thing in the morning snuggle!!!

Anyway I ended up going to bed about 10ish and have not gotten off the bed since then. Well I have gotten up 2 times. 1 time for something small to eat and 1 time to get some water. I just realized though that I have not peed all day and it is now 5;14 in the IC is loving me right about now!!! That could explain why my bladder feels like it is on fire and my lower back is ready to break...this past weekend, I actually drank cherri pepsi. I NEVER drink soda!!!! What the frig is going on with that????
Last night my sleep was terrible! I kept thrashing about,,,I kept waiting for Jim to roll over and tell me to STOP IT....I felt so bad but I hurt so bad I just wanted to scream!!!! When I finally fell asleep I think I got about 2 hours of sleep and have been awake ever since.
Jim just said, "well at least our bed is comfortable" and I told him not if you are laying in it ALL day! I have zero legs just don't want to work and feel like they weigh a ton when I walk....forget the stairs.
I just don't know if I can handle another winter like last year! I am a happy person and last winter almost put me into a deep depression....

One of the best parts of me blogging has been the friends that I have made and that some of my local friends have been able to read about what I really go thru.

I think that having the pain is beyond awful! The tiredness that you feel is overwhelming but the loneliness that you feel is by far the worst of them all!!!!! People/friends don't want to be bothered by your pain...they just go on with their lives and when you can get back into it well ok then. It also amazes me how different my friends can be....for instance I have 1 very dear friend who I think the absolute world of and she suffers with alot of pain problems and we talk often, well this morning I called to wish her a happy birthday and she was more concerned about me and what she could do for me. I quickly changed the subject because it is her birthday and I want her to celebrate it and be happy but the fact that she really truly cares and shows it with her love. Then I have another very dear friend who I was speaking to and I mentioned that I was still in bed and it was past 4:00 and not once did she say I hope you feel better, whats wrong, anything I can do to help you.....I often wonder how people can be so different? Where is the compassion? Then I have the friend that acts like she cares only when other people are around!! This friend doesn't even begin to try and really understand what I go thru....So yes, I feel very isolated some days!
Don't get me wrong, if any of you have read my husbands post then you know I am truly blessed with a loving and supportive husband who I love with ALL my heart. But he works during the day and I cannot expect him to talk to me every 5 minutes.....
Lord, I pray that this goes away and is not something that stays all winter long...I REALLY DON'T THINK I CAN DO ANOTHER WINTER LIKE LAST YEAR...

Hey, I know what I will do....I WILL GET A TANNING BED LIKE MY SISTER IN-LAW and put it in our up stairs multi room :) at least I could get some warmth and sun that way...

The pictures that I posted are from Thanksgiving weekend,,,,and as soon as I find my camera I am going to take a picture of how I look now, yes, I said how I look now and post that picture too. Then you can see what fibromyalgia can really look like.

Tuesday, November 23, 2010

Letting go

Last week started out to be pretty bad. I mean not just pain level wise but with just plain old stress. Hum, but then again my pain level is based alot on my stress level and of course the weather. Anyway, I was really unsure of how my thanksgiving was going to go and I can honestly say it was better than I thought.
Other than having a shadow that I really didn't want...all was good.
My mother is an awesome cook and I so love eating her food especially her stuffing....which I think I ate 6 cups of....:)and at least a whole fruit pie!!! Can we say YMCA!!!!

Well I feel it, do you? CHRISTMAS????? It's coming and I am ready for it this year :) Last year was a really, really bad year and I honestly didn't know how I would make it through but by the grace of God and with my loving husbands help, I DID!!!! So this year I really want to enjoy Christmas....I want to decorate the house and actually bake something! That part is scary I know...hahaha
Don't have alot of money for presents but can still do alot of kissing under the mistletoe...:) watch out baby! I want to play Christmas music while I am cleaning and in my car...I might even sing along. I know another scary thought...:)

Well we are back from my parents house and I can honestly say I am in a full flare!!! My legs/feet are off the charts and the rest of my body I can honestly say feels like I have the flu. I just want to lay here and do nothing and the only with that is....wait, there is no problem with that! I can just lay here and that's what I am going to do!!!

Monday, November 15, 2010

Feeling overwhelmed

Yesterday afternoon was a pretty bad one for me...I had moments where I just wanted to scream, throw things and just get in my car and drive. Instead I just cried my eyes out while I raked leaves and talked to God.
I am feeling so overwhelmed and it is because of my yard!!! People will tell me not to worry about it, that just makes me want to yell at them!! I have ALWAYS loved to do yard work. Anyone that knows me and knows me well knows that yard work is one of my favorite things to do. It is great for my stress. I need to explain what I mean by yard work though....puttering around with my flowers, weeding, just your everyday upkeep and maybe some changes to landscape now and then. Well my yard has gone to crap and back and I just can't seem to get anywhere with it, I have always loved a nice yard. It is just one of those things that calms me...I can't explain it....maybe it comes from sitting on the front porch and watching Alexx play as a little girl, I don't know I just love a pretty yard. It is not for my neighbor sake. (though I am sure they would appreciate it)
I have tried so hard to get grass to grow in our yard, front and back. Many hours of pain and still no grass...we have dirt with lots of grass seed just laying there!!
My neighbors have walked by while I was on my hands and knees and made comments like, it's going to be beautiful when your done or wow, you are working away there aren't you?? The part that makes me cry while I am typing this is that I have put so many hours of pain into this and to have nothing to show for it!!!!
I don't like to use my precious good hours and have nothing to show for it!!!
I am fighting a losing battle here but I can't give up and I can't see an end in sight. Today I have to go outside and rake up leaves and clean off our patio before it rains and cover the wood pile.
Please don't say that I should let it go, that with fibro you have to pick and choose what you do. I understand all that.....I would just like to have a nice looking yard...I would just like to have some grass!!! The sad part is, we used to have grass in alot of the areas that are bare, I am not sure what has happened??? We have more weeds than grass, we have brown spots where we did have grass.
We have this area we call the has got some trees that have got to be cut down!!! Alot of dead branches that I will be getting rid of this week. I am not sure how I will be doing that but I will do it!!!!
Not to mention that my hosta has just about all died! I have a flower bed beside the deck that used to be full and lush and now is just about bare...everything died?????
I had beautiful, full, lush, hosta plants on the side of my house and they all have died!! I did have beautiful plants on the top of my hill and they are all now dead....:(
I just want to cry,,,hey I have done that and it didn't help!!!
And if that is not enough I have other things I want to get done.....but as long as the yard is hanging over me......I just feel so overwhelmed...:(

Thursday, November 11, 2010

Just a Post

Today is one of those days that I don't like myself. I don't like what this disease has done to my personality....dealing with the pain day in and day out. Holding it in and not showing the pain Everyone says to be positive, show your sunny side....don't talk negative. People get tired of hearing about the negative. You will have a better day if you have a positive outlook on life....
How can I be positive when I am always letting the one I love down? The pain makes me want to isolate myself somedays and trying to explain that to someone you love is very hard. Not being able to show affection some days because you hurt and have become so numb to everything is not fair to my husband. He doesn't understand and no matter how many times I try and explain it doesn't help him. All he feels is the hurt and nothing can get past that.....

There are times I wish I could just go live the rest of my life by myself then I wouldn't have to risk hurting anyone!! Having fibro is not something I chose to have! I am trying the best I can to live as "normal" a life as I can with it. It is the hardest thing I have ever had to tires me out mores than anyone will ever know. Just to smile sometimes when I really don't want to or when my stomach is in such pain that I want to just roll over an die but I can't so I just smile. Doing that day in and day out really tires you out!!! Physically and mentally.....
In doing all that I don't give the one person the one thing he needs and wants and....I just want to scream because of it!!! It is the one thing I want to give of myself and fibro robs me of everything that I am just trying to survive the day!!!!

This past week has been a hard week for me.....getting started has been taking me longer than I like and that has got to stop!!!! I would much rather be busy in the mornings and go to bed at a "normal" time. I have been falling asleep around 1:00 am lately. I do not like that!!!!!!
Last night when I fell asleep I felt as though I was on a bed acid trip for a few minutes. It really scared me for a bit....
Went to my new pain doctor yesterday ( 2nd visit) and I am starting to like him. He had more of a personality. Really took the time to listen to me...we talked about my right wrist, my back and getting some injections.....yea!! He gave me a prescription to try for IBS, I am kinda nervous about trying it since I googled it and the first thing that popped up was about a court case...
I really think I am going to like him.....
Off to the Y.....

Monday, November 8, 2010

Leaves ( from Jim )

Hunting Season

Ok I know a few of you may be totally against hunting thing, but please bear with me (no pun intended).

I really enjoy this time of year for a few reasons, one is its hunting season and it’s also the most time I get to spend away from my normal life all year long. I get to sit in the woods and see nature at its best and worst. I was in the woods this morning doing what I normally do which is pray for a deer to come my way, well that lasted about 2 minutes until my mind went to my wife and all that she suffers though with this horrific disease. And as I watch the woods come to life this morning I saw something that I have never truly noticed, well maybe I had but not in this way. We live in the city and we see fall come and go and we see the leaves on the ground and see the chore that it is to keep them clean. But here is my question, have you ever heard a leaf fall, you know just a single leaf falling from 30ft up in the air to the ground? Do they make a noise? Most would say no it is just a leaf it is light and it floats to the ground softly landing. Well it doesn’t it is like fibromyalgia is in my wife’s body it is loud it hits things on the way down causing more and more noise a leaf falling will make so much noise you would think an animal was heading your way. Walk on leaves and you will hear them crackle during the day time but walk on them at night or the wee hours of the morning and it will sound like fireworks going off.

So back to my thoughts this morning, I wonder if normal people actually understand that the nerves in the fibro person are so intense and the pain is loud that its like having leaves falling and then being trampled on, constantly making noise for the brain to try to interpret and being trampled on each time a muscle is moved. Are the medications really doing anything to help other then acting like water on the fallen leaves, making them slippery? They are still there and when the water evaporates the leaves go back to crackling and the pain returns. Us normal people seem to be lucky as when the leaves fall we still have a clear path to walk on and the ability to not hear the leaves hitting the ground. I prayed for my wife today when I was in the woods and a gust of wind came up and it was raining leaves making so much noise an elephant could have snuck up on me, I prayed that maybe today the leaves would fall a little softer, and I prayed that for at least a day let no one trample on the ones that have fallen and that there would be a clear path to travel on for todays journey, and to all of Lynns fibro friends I say that prayer for you also………

The power of positive thinking!!!!

Just thought I would post some pictures that make me smile....the first one is of my hubby doing yard work. This makes me smile because he really doesn't like yard work but does it because he LOVES ME SOOOOO MUCH!!!! :)

The 2nd picture is of my stepson the day we got married, fooling around with some bows he wanted to put on the car.

The 3rd pictur is of my daughter and Jim. This one makes me smile because Alexx REALLY LOVES her step dad!!

The 4th picture is of me and my friends enjoying some of them is what I call my bestest buddy

5th picture makes me smile because my daughter is happy and smiling!!

Last picture I am just happy that my husband supports me wanting to do a 5k. I am not able to run them like I used to but on an ok/good day I can walk it. On a really good day I can even jog for a min now and then. My husband is my biggest supporter and without him I couldn't do it!!!

Thursday, November 4, 2010

looks can be decieving

So much for going to bed early.......but today is another day and I am going to try again! By the way it was 1:20 when I finally went to bed.
I am laying here listening to my cat and his breathing is really worrying me. He sounds congested and is sneezing again. Before when he would get like this it would happen after he had been outside. He is such a loving cat, my baby! I am keeping a close eye on him..

Jim said something to me tonight that I just wanted to bring up again. Looks can be deceiving. what I mean by that is.....people see me going to the Y and say to Jim, saw your wife today at the Y and she was looking good. Or someone will see me out and say, you look good. What they don't see is what goes on before I get to the Y or what goes on before I leave the house. They don't see that I was laying in bed until 12 o'clock just trying to get the energy to get up to go to the Y. Laying in bed waiting for my pain meds to kick in and praying that today it would be enough for me to be able to leave the house. They don't see me hobble around the house, hunched over in pain trying to make it to the bathroom or down the stairs.
They don't see that it takes a great portion of my day just to be able to face the day.
If I have something planned for early in the day they don't get up with me extra early just to take my pain meds so that I can be able to get up and take a shower. I also pray that when I wake up early it is not going to be a flare day and that I can actually move. Even if I take my pain meds that doesn't mean I will have the energy to get ready....or that my arms will be strong enough for me to blow dry my hair. There are many a mornings Jim has seen me cry because I can't get ready!!! I never used to wear my hair in a ponytail, now that is how I wear it a good bit. There are days it even hurts to touch my head with my brush.
People don't see all the guts and glory that goes on behind the the next time you see me and think I look good, take a moment and wonder what I went thru to get there.....

Wednesday, November 3, 2010

weather change

Well I knew it was going to happen no matter how hard I wished for it to stay away. The cold weather! It is here.....and my body is feeling it! The past couple of days have been hard for me to get going and I have been starting my days later and later. I really don't like that. My body is all out of sink. I have been going to bed about
11:30 but not going to sleep until about 1:30 and I have got to stop!!
I know better......winter is the worst time for my fibro and the one time of the year I must take care of myself and force myself to be on a schedule. This is not to say that I can let myself go the rest of the year by no means. Anyone that has fibro must take extra care of themselves I am an example of that. What I mean is........over a year and a half ago I started to gain weight from taking lyrica, I stopped excercising, I stopped walking, I could not get out of bed, my energy level was very low. Actually I had all those symptoms for over 4 years (minus the lyrica) what I am saying is I let myself go and gained 25 pounds and on my short body that is not good!!!! So, with the fibro beating me down having the extra 25 pounds on me only made it worse!!
Last winter my IBS was at an all time bad and again add with that the 25 pounds and then picture how I felt....not good!! There were days I scared myself and Jim....:(
So what I am getting to with all this rambling is, I cannot let these long, cold winter days bring me down!! I have got to get into a better routine and make myself stick to it!
I know alot of people say tanning beds are bad but I am going to be going to one this winter. I will not be going all the time. Just once in awhile. The warmth does make me feel good and when I am feeling really bad or starting to feel bad, 20 minutes in a tanning bed can change my whole day. And my mood.....and my husband is happy when I am in a good mood.
So, with all that being said I am now going to get my butt up and force myself to go to the Y and do some form of movement for 30 minutes....;)