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.
Saturday, October 22, 2011
Torn between two worlds belonging in neither
Wednesday, October 19, 2011
another day in fibro land...
In fibro land you get to enjoy the feeling of your body weighing a ton and just melting into where ever you are sitting/laying. I can even feel my butt getting wider and that is all free of charge! I know we (people with fibro) are always saying to people that don't have fibro, imagine having the worst possible case of the flu you can have and remember how lifeless you felt, now take that feeling and multiply it 5 TIMES and that is how I have been feeling since Sunday. I don't just get this way with the flu, I get this way ALL year long!!! I get this way at the drop of a hat! I can get this way just because and to top it off I get to enjoy the fun filled ride while in extreme pain!
Then the isolation sets in because everyone is living their life and you start to wish that just 1 person would notice that you are missing from life. Which makes me even sadder that no one notices.....it reminds me how my life has changed and how my girlfriends all have lives and I don't. They have no reason to call me.......they will never know that I have been house bound for almost a week, that I have cried because I so want to be outside and can't. I wish that Jim had someone to talk to about this.....this is sooo hard on him too!! I am sure he loves going to work and actually having some "normal" things happen. What I mean is, he can get away from this.....
People don't want to ask because they don't want to hear about it........:(
Someone I know and used to be very close to doesn't ask how I am doing because she doesn't want to hear anything negative. She only believes in thinking positive thoughts...which I do too and I love to think that way but sometimes I just want to talk and let it out. Only problem is no one wants to hear about it. I think they think after 4 years, I should be done with it, Well guess what, I have this for the rest of my life!!!!! I really do try to be positive and keep a smile on my face but you know what, THIS JUST REALLY SUCKS AND SOMETIMES I JUST CAN'T TAKE IT!!! I texted a friend this morning about something and told her about being so tired and she said I really should try liking coffee ( i can't stand it) I also told her that I have to go to an appointment at 2:00 today and she said that maybe getting up and going will make me feel better.....I know she meant well but it is just not that easy....
Well I have to cut this short because I just got an exciting email from my daughter that I need to read.....she can make me smile....:)
Monday, October 17, 2011
Another day....
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The walk was great!! We walked to the end of our street which is 3 houses and back then I let Daisy play in the backyard for a few minutes. It is so freakin beautiful outside...I just walked around and looked at everything that needs to be done and started to cry..:( I hate, hate that I can't get the work done in the back yard that needs to be done. I am stressing soooo much over the small projects not being completed. I actually get knots in my stomach every time I walk out in the yard....I just need one good weekend with Jim. OK enough of that....
O crud, I just remembered I am out of one of my pain meds and need it for tonight. Jim is hunting and will not be home until after dark and by then will be to late to get. Crud, crud, crud!!!
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This is another day, Tuesday the 18th and I truly hope it is better than yesterday. My body has just not been feeling all that great. Remember that shower I said I was going to take last night, did not happen!!! I am about as ripe as a piece of bad fruit!! I am taking one this morning!!!!!!!! Thank goodness Jim was hunting until about 9:30 last night.
When I woke up this morning I told Jim to just ignore me because I kept saying I hate my body, I hate my body! I had to get up and feed gizzy and daisy and it was pure torture every step I took!!!!
So on that note I'm going to go take a bubble bath......O' and the pictures at the top are kind of a before and after thing. The first picture is when I am feeling half way human and can function as one. The 2nd picture is how I look this morning. As I am typing this my shoulders are begging me to quit and my eyes keep closing. If I didn't fix it there would be a bunch of thisssssssssssssssssssssssssssssssss on my post. My finger gets heavy when I fall asleep while typing. Change of plans, I think I'm going to take a quick cat nap then a bath....daisy is still sleeping so I'm taking advantage of it....:)
Thursday, October 13, 2011
Behind closed doors
They don't see me laying down when my husband comes home from work and asks, what's for supper? If I don't have some meat defrosted in the sink for him to cook on the grill, he will volunteer to cook something else or go out and pick something up. Some weeks Jim has had to take care of supper 4/5 nights out of the week.
They didn't see me when my daughter has come to visit me and I spent 2 of the days in bed.
They don't see me when I don't leave the house for days..They don't see my husband going to social functions without me because I hurt to much to go and am also too tired.
They don't see the look on my face when my legs, ankles and feet are hurting and I have to walk. If I am home and have to go to the bathroom sometimes I will hold it as long as possible just so I don't have to walk. (I have IC, so that is not a good thing to do either)
They don't understand the passion I have for gardening and having a beautiful yard and that having to let my flower garden and vegetable garden go, kills me! Not being able to get out and work in the dirt when the weather is perfect....my body is useless to me!!!!!!
They don't see when my husband can't hug me because know matter where he touches me it hurts!!! They don't see THAT NO MATTER WHAT I AM DOING, MY PAIN IS FORE FRONT ON MY MIND!! I am typing this and I feel the pain in my left hip, my knees, my arms, across my shoulders, across my lower back, my ankles and right now my feet are about a 3. Even when I am talking to someone, my pain is there! THE PEOPLE READING MY PAPERS, READING MY FILES, THE DOCTOR THEY MIGHT /PROBABLY WILL HAVE ME SEE, DOESN'T SEE OR FEEL ANY OF THIS....BUT I FEEL AND LIVE IT EVERY DAY!!!!
Yes, I do have some good days! My good days are never pain free days though, just low pain days! I never know when they are going to happen???? Do I have great days....? I can honestly say I have had maybe 25 in the last 4 years! I can honestly say, I remember about a 3 hour period where I felt completely normal! No pain, nothing! I felt like ME!!!! I was over joyed with happiness!!
How do you make someone see and understand the pain you live everyday??? How do you make someone understand that you try to live as normal a life as you can? That your normal is just surviving the pain some days??? There are no tests to prove that when I am smiling, I am hurting on the inside...everyone on facebook sees all the "pretty" pictures that I post, what they don't see is....me!!! I post what I want everyone to see!
Wednesday, October 5, 2011
Feeling helpless
I had such high hopes this morning...I was going dress shopping with my friend Melissa. A dear friend of ours son is getting married this weekend and we both needed a dress to wear. I need one because I don't have a fall dress that fits (i'm too big) and she needs one because she looks awesome!! Melissa and I went into the dressing room together that way we didn't have to keep opening the door to say what about this one? I am so glad we did....I had to keep sitting down, Melissa had to help me get the dresses off because I just couldn't use my arms, I had no strength. I also discovered what I thought was coming....shingles on my arm. I think Melissa was surprised to see how bad I was.
My energy was zapped, gone! We started at 11:30ish and by 1:00 I was done and on my way home. Where have I been since then? Laying on my bed feeling my butt spread wider and wider! So much for my plans to go to the Y today, I was so looking forward to that!
Our small group starts back up tonight....I was really looking forward to seeing everyone...:) I hate that Jim is going by himself.....something that he hasn't had to do in awhile.
I started this post the other day and never finished it so I am ending it here.....my thoughts have gone in another direction.