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!!!!


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.....

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!!!!


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

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.

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.

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.


As a famous writer once put it: From there to here, and here to there, funny things are everywhere.