Saturday, October 22, 2011

Torn between two worlds belonging in neither

Torn between two worlds belonging in neither

Ok why torn between two worlds, as a husband of a woman with Fibro, I am having to live what almost feels like two lives.  Let me explain as those close to us know Lynn and myself were to go on a mission trip to Mexico a few months back, at the last minute flares came and other medical issues so Lynn couldn’t make it but I still felt I needed to honor my commitment to the team and continue on with the trip.  So we now had 7 people going on the trip and I was the only one without a family member with them. We arrived and due to heavy rains my room was flooded and I was removed from the group (I choose to be moved) so everyone else on the team was one floor above me and I had a whole floor basically to myself.  It was an odd time, and also a quiet time for me to reflect on being there, Lynn’s health, Our Marriage, and many other things.  It wasn’t all bad but it was just lonely, and even when we went to church on Sunday I sat by myself. I didn’t feel as though I was there to be with everyone because I wasn’t I had no bond the way they did.  I spent the week doing the work that needed to be done and as a team we did a lot, we put a new roof on a hospital, we refinished a section of roof and then built 3 walls to make a new room in the hospital. But when the work wasn’t being done I kept to myself, I read a book and sent emails to Lynn. I looked forward to the 15 minutes a day that we got to talk to each other.  So here is the deep pondering question a spouse must ask themselves, where do I belong? I mean, I know who I am and I am sure of whom I am but how do you continue experiencing things in life that you want to share with your spouse but you no longer can for medical reasons.  Is it wrong for the healthy person to continue on and continue experiencing things only to email pictures of where and what you are doing? Is that fair to my wife? She would tell you it isn’t fair for me to miss it because of her illness all the while wishing that I wasn’t experiencing things with out her. 

I have concluded many things and still struggle with more concerning the invisible disease, first the spouse still needs to do things they can do, second the spouse can no longer truly enjoy things the way they used to because the experience is tainted with the fact that my wife isn’t here, or she is in pain because she is there, so you make sacrifices change your plans and you don’t do all the things you wanted to just to be together.  It amazes me how people just go and not think twice about it, all the times when Lynn was healthy we did stuff we saw stuff we traveled a few new places, we made plans to visit life long bucket list places, but now we don’t talk of those things anymore not sure if its because I don’t want to worry her that I am missing things that we cant and don’t do anymore or if its because I realize some of those things are no longer with in reach for how life is now.  Lynn doesn’t talk to me about them either due to finances, and I could speculate but it just isn’t talked about.  Let me give you a better idea of what I mean. I was reading my western magazine the other night and the pictures in the magazine are places I went to as a kid camping ( thanks Mom and Dad for letting me see those things), I looked at the pictures and said wouldn’t it be great to take Lynn to those places to see the history and the beauty of it all, well within a few minutes those thoughts were gone because Lynn is having a bad time right now, and the thoughts go to, she wouldn’t be able to sit in a car and travel all day, how would she do with the climate change, I know she doesn’t do good when it rains and you never know when your going to get a desert storm that just pops up. I guess we need to save the camping for close to home.  I haven’t even talked to Lynn about this so when she reads this I am sure she will not feel good and she will apologize that we can’t do those things, which in itself kills me, because as long as we are together it is all that matters.  We know the beach is a good thing for Lynn usually although our last 2 trips to the beach we have found that the fibro is still there and very much alive.  So we pretty much plan our vacations now on one destination spot with a beach as the back drop.  Not all bad but not always an adventure.

So now that I have rambled on a bunch of thoughts  I will go back to my original statement,  And I don’t mean to upset anyone with this but, as a spouse ( heck I am going to give it a name I will call it a FIBROMATE,, wonder if that is really a word seeing that spell check isn’t saying I misspelt it) as a fibromate  I think we are stuck and torn between two worlds one of old normalcy and a second of the new normalcy,, and although I am torn between them if it is a choice between regular life with out Lynn and this crazy fibro Life with Lynn, I will go to my grave happy that I am living the fibro life. And just because I do some normal things because Lynn isn’t feeling well and cant at the time, does not mean that my mind and heart are not left at the house with Lynn, and things are never the same with out her by my side. I am just torn between the two worlds I live in now………

Wednesday, October 19, 2011

another day in fibro land...

Good morning and welcome to fibro land! What would you like to do today? Lay in bed all day and mindlessly play on your laptop talking to your fibro friends? Lay on the couch and watch tv? In fibro land your choices are can do all these and not even take a shower! WHICH BY THE WAY, I TOOK A REALLY NICE WARM BATH LAST NIGHT AND LOVED IT!! So I am clean...:)
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 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....

Woke up this morning and felt like I had been hit by a bus! Anyone that has fibro knows what I mean...the severe flu feeling. When I tried moving my left hip the pain was so intense that I didn't know if I would be able to walk. Imagine that pain and knowing you have to walk down a WHOLE LOT of stairs to get to your meds in the morning. (we also have a new puppy that is trotting behind me) Our next house will have the master bedroom on the ground floor, in fact I hope our next house is only 1 floor! Anyway, I had the hit bus feeling, the severe flu feeling, hip pain, every nerve in my body was on fire and all I wanted to do was crawl back up the stairs and go to I pretty much did. After I fed Daisy (our puppy) and let her out to go potty, we went back up stairs to bed for a nice long nap....I love my daisy!!!! She has been laying here sleeping for the past 2 hrs while I rest..:)

I hate the days when just the thought of moving makes me tired. I had to meet my friend Michelle somewhere at 11:00 and driving there was soooo hard!! As I said, imagine having the worst possible case of the flu and then times that by 5 and that is how I was feeling. I put on my normal wardrobe of elastic waist shorts, sports bra and tank top. Did not take a shower and trust me I should have since I have not had one since Saturday morning. I will be taking one tonight though. I am beginning to offend myself...haha

I was home by 3:00 and have been pretty much laying on the bed since then. I'm starting to get hungry so I guess I get to concur the stairs again.

I think I am actually going to grab something to eat and take daisy for a walk down the street, it is such a beautiful day and I would love to enjoy some of it. Today's high is 83 and by Wednesday it is supposed to be in the low 60's and high 50's.


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!!!

I just spoke to my dad on the phone, I so wish we lived closer!! Jim's parents live right down the rode from us and I so envy him that....I talk to my parents at least once a day, sometimes 2 and 3 times a day. I want to spend so much more time with them and get so angry that I can't just get in the car and drive to see them!!!! Since I have been sick I think I have driven down to the beach 3 times by myself and trust me when I say it was an ordeal each time. It takes so much preplanning and then all the preplanning can be for nothing if my body decides, hey you are going no where today!!! When I do go, I have to stop every hour and get out of the car to walk around to stretch my legs and hips. I eat/munch the whole way there just to make sure I stay awake. I call to check in every half hour. I have had to stop and take a nap when I just couldn't stay awake. I leave around 2:00ish since that seems to be a good time for me... If it is raining, forget it I am not going. My body would never make it....

A couple days before I go I know that I have to rest up and take it easy so that my body hopefully will be 1/2 ok for me to do the trip. Like I said, I have only done the 4 hour trip about 3 times by myself in the last 4 years. The funny thing is, when I was a district manager (for 14+ yrs) I drove for hrs by myself....greenville sc to Chattanooga tn, myrtle beach sc to Savannah ga, myrtle beach to asheville nc. I have driven many times up to 7 hrs with no problem....I had the states of SC, NC, GA, TENN, part of VA, I can't drive to see my parents without it being an ordeal!! I hate it!!! I love my parents very much and treasure my time with them!!!!!


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

I am writing this post because I received a letter from Social Security and they are reviewing my case. They are going to decide if I am able to work yet??? Has there been some great cure for fibro yet that I don't know about? (Lyrica is NOT the answer like they say on tv) Is there some great thing out there that is going to give me my energy back 100%? I know, everyone gets tired during the day....but I wake up in the morning and about an hour or so later I want to go back to sleep. I can't drive very far by myself because I don't know when I am going to fall asleep. There are times I have to call Jim and tell him where I am because I am pulling over to close my eyes. THEY WILL JUST NOT STAY OPEN!! One minute I will be fine and then all of a sudden my body just shuts down and I have to sleep. Not to long ago I had to take a 30 minute nap in the home depot parking lot. Jim can usually tell when it is coming on, my words start to slur. They don't see me wake up 3 to 5 times a night. They don't see me get up take my meds and go back to bed until 10:00/11:00 most days. They don't see me take a whole week to do a hamper full of laundry. (could be done in 1 day) They don't see me not take a shower for 2 days and if I could go 3 days, I probably would. Just the thought of getting up and exerting myself to take a shower is so painful some days that I just don't do it!! If I do go out it is usually to the grocery store and then to the YMCA. My pain doctor suggested yoga, I liked it just couldn't get to the class on a regular basis. I can ride the bike to no where though and it makes my hip feel better for a couple hours. (my hips really hurt, especially the left one. it really burns, like right now the pain is about a 7+)

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 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!!! I post what I want everyone to see!

Wednesday, October 5, 2011

Feeling helpless

Yes, it is really me, I am alive! In case you are wondering about where I have been and why I have not posted in so long, it is was to darn HOT and I didn't feel like doing anything. My backyard garden shows it too! I have a 2 page list of other things that needs to be done and maybe I'll get 1/2 a page done if I'm lucky. Of course it is stressing me out majorly! I used to be able to run circles around people and get 10 things done in 1 day. Now if I get 1 thing done in a week, I am doing good. Today has been a picture perfect day and I have wasted most of it laying on the bed. That's my life....:(

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 thoughts have gone in another direction.