It never gets any easier, does it?

In case I wanted to forget what a full fledged flare feels like I had one slam right into last night!!! My week has been up and down with pain and being tired and I tried fighting it....I also tried being a good girl and didn't do very much, hahahaha not that I could if I wanted too! Yesterday of course I had plans to go to the Y and take Daisy for a walk neither of which were done. I think if I had someone to do either with it would have been easier just for the moral support. Of course it would have been at a slow pace but of course everyone is busy with their own lives.
I am so blessed to have an awesome mother in law. I needed to take this lamp that I got from my mother (that she got when we lived in Holland and it was hand made in 1920 to 1930 in Belgium, not sure??) to a store downtown and she went with me and she drove.....:) It is not really a lamp but a chandelier of sorts, hand carved out of wood that needs to be wired and basically made ready for electricity. I can't wait to hang it up in my dining room I will post a picture when I get it up. Anyway, when we left there we went to a place called Daisy's and I of course drooled over everything. It is a place that has booths set up with different peoples wares for sale....:) I found the cutest doggie outfit for my Daisy, it is a sundress...hahahaha
It was great to get out of the house. As soon as I got home, it was straight to the couch for me and that is where I stayed pretty much the rest of the day....:(

We were supposed to go to the 2nd Fibromyalgia support group meeting last night. I was looking forward to going because I had met a friend last time and was looking forward to talking to her plus I told her I would be there. We actually got in the car and drove a bit down the road and I asked Jim to take me home. I just couldn't do it. I wasn't going to be able to sit thru it...I was so sad. We went home and I went back to the couch. I could feel my body slowly go into a dark painful hole! Kyle came by to visit and I didn't even get up I just layed there and eventually fell asleep. I remember trying not to move and that my body was going in to a full blown flare! When I woke up I wanted to crawl into a hole and die that is how bad I felt. 
Jim is such an AWESOME husband!!!!!!!!!!  I just wanted to throw that in....
Crawled up staires and then remembered that I didn't have any sheets on the bed...ugh! I was going to wash them and since I had not been up stairs forgot all about it...my dear sweet husband didn't fuss just took to making the bed. I wanted to cry, I felt like such a bad wife! I barely remember crawling into it and falling asleep but I do remember waking up all through the night because of my pain. It was off the charts!!!!I didn't think morning would ever come but then again I wasn't sure if I wanted it too because my pain seems worse in the day. Finally I couldn't take it anymore and I got up and took my major pain pill about 5 a.m.
I am the one who gets up with Daisy and takes her potty and feeds her and Gizzy while Jim gets ready for work. I take my pain meds then me and Daisy usually go back to bed for a bit. This morning I couldn't do it.....I hate that Jim had to do it!!! I don't like feeling useless as a wife or as a person!!

The good news is I am starting to feel better....:) Of course I have been laying down all morning doing pretty much nothing......

Talk about feeling useless...for the last 3 years I have been in charge of something at our church called J J J , Juice, Java, Jesus, starting at 9:30 for our visitors we have coffee, pastries and fruit.
What I would do is ask members of our church to bring things each Sunday, well I am not doing that any more. The past couple weeks it has been hit or miss on our table and people that say they would bring things forget or just don't bother. Well, that reflects bad on me sooooo I have decided to pass this on to someone else. It is church and I can't say anything to the people that "forget" so it just looks like I am being slack! When I told the person in charge of this area that I was stepping down I thing she was relieved!!! I wanted to cry!!!! There was no, why???? Just an ok, I will find someone else to do it, I know you don't need the stress!!! I CAN DO THINGS PEOPLE!!!!! I AM NOT USELESS!!!!! I ACTUALLY USED TO BE A VERY IMPORTANT BUSINESS WOMAN!! I COULD MULTI TASK WITH THE BEST OF THEM!! I HAVE A BRAIN....IT REALLY BOTHERS ME THAT PEOPLE THINK I AM AN INCOMPETENT PERSON, SOMEONE THAT CANNOT BE TRUSTED TO DO WHAT THEY SAY THEY WILL!!
Yes I am ALOT slower than I used to be! Yes I might have to ask questions more than usual, but I am sensitive and I do realize that people wonder if I am capable of doing things and the answer is yes I can!!!


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Boxes and Secret filing places

Boxes and Secret filing places,

                I know I know here he goes again writing about some crazy analogy  that makes no sense,, but ponder it with me and give me a little lee-way and it may all come together in a paragraph or two.

Have you ever seen Indiana Jones Raiders of the Lost Arc? At the end of the movie they take the arc and put it in a box in a warehouse  with what looks like a million other boxes with what  looks like only one person knows where it was placed, he drives off for it to never be seen again.  I wonder if this is what Fibro does to people it boxes things up and store them some place we just can’t seem to find. We wonder the maze trying to find, our old spunk, the joy in life, the sense of humor we had, our out going social personalities, the energy we had, the enjoyment we had in that one hobby that we can no longer do.  The list goes on and on, and I did say we, as I truly believe I am going through this with Lynn.  We wonder the mazes of the boxes hoping that we can unlock one.  We see a box labeled long rides on the motorcycle, we wiggle and giggle the lock but it wont open and we long for those old days, we move on to the box of playful fun and conversations and it is locked tighter then the other box.  I can go on and on how each of the boxes wont open or will be locked loose enough that we can peer inside and get a small taste of what it was like, you hear a song and it takes back to that place, you smell a smell and you are in the middle of the Caribbean ocean soaking up the sun.   

                But what I am finding is that occasionally a box will be left unlocked for us, may be for a few hours and it may be for a few days, it is on those days that I hold tight for it is for those days that I look forward to.  We don’t know day to day if a box will be unlocked or if we will just be peering into it.  But I do know that I cherish walking hand and hand with you Lynn, looking for the day we meet the guy that holds all the keys and he unlocks those boxes for us forever. And until that day understand I am holding you tight and am happy to be on this journey only because you are with me…………….

Clear blue water and warm sand between my toes..

I am laying in bed right now and looking out my window and I see a beautiful blue sky, now all I need is to be sitting on a beach chair looking at crystal clear blue water and feeling the warm sand between my fingers as I put my hand down beside my chair....:)

Then maybe just maybe I wouldn't be hurting so much!!!!!! I don't honestly know what it is about the beach but for some reason I don't hurt as bad when I am there. To feel the sun beating down on me it just seems to suck all of my pain away...I know it sounds corny but it is sooooo true!!! I mean I have had some bad days at the beach and come to think of it I have had some bad weeks at the beach but that being said a bad day at the beach is still a good day.

Well I didn't walk yesterday but I did make it to the Y and ride the bike. I don't know what is going on, well yes I do FIBRO and all the garbage that goes with it!!!!!!! I have had no energy lately! What people don't understand when they see me is what it takes for me to get up and go. I have to MAKE my body get up!!! It is sooo hard to explain and the only way I know how is the flu explanation....imagine you have the worst flu ever and you have NO energy and your body just doesn't want to move. That is how I feel EVERY day and I HAVE to make my body move which means I am fighting against the urge to lay down or sit down all the time. That is enough to make anyone tired, hahaha! People see me and they have NO clue what I am dealing with on the inside!!!!! That is the most frustrating thing about fibro!!!! I have got to fight this!!! I cry every day that I don't exercise! I don't want this body! I know it is wrong but I am so jealous that it is sooo easy for all my friends to stay healthy...I am sure people think that because I don't work I should be able to stay in shape with no problem....ha!!!!! I would not wish this on anyone!!!!

I have noticed that my hands are getting weaker....:( I am having a hard time opening things which I never did before????? If my arms are tired, forget being able to write. I actually had to have a friend write something for me the other day because I just couldn't do it! I wanted to cry but didn't want my friend to see me. I don't think she would have understood....this sounds bad but I don't like to cry and have someone look at me like I am weak!

I had an awesome massage last night!!! I will be asking for the same lady next time.....she knew exactly how much pressure to apply and used a lavender wrap on my face to relax me and o did it work!! Loved it!! Jim took me and while waiting to pick me up he went to this mexican rest for a drink and while there he discovered this young man singing, he taped him so I could hear him and he is really good. He sings songs from the 70's and the 80's which we both love! Sounds like a date night to me...:)

I know I am complaining about all my pain and being tired and it really sucks that I hate my body! I hate that I don't feel healthy.....I will have a few good days then have a bunch of bad days that wipe out my few good days....I could handle being in pain, I could handle being tired if only I felt healthy in this body!! I look in the mirror and don't like what I see....

I am  sooooo very blessed to have an AWESOME husband!!! I thank God every day for him and want to be the wife that he deserves. I want to be the wife he fell in love with!!! Jim is my hero, my best friend, my life, my love!!!
Fibro doesn't just affect me it affects Jim in soooo many ways and is just as hard on him as it is on me. People do not realize this and do not realize what stress it can put on him too. I am so sorry babe!!! I never meant for this to happen!!!
I pray every day that you will find someone that you can talk to about this. Another husband perhaps over a beer once a week....:) I know how much good this would do for you...know one ever asks how you are doing???
 
 I am just tired of feeling bad and am ready for this slump to be over!! I want this weight off sooo bad and want to get back to working out but when I have a body that fights against me it makes me so frustrated! When I rode the bike yesterday for 30 minutes it took every ounce of my being to do it!!! The highest I went up to was a 4....come on, that is chump change and that killed me!!  I AM OVER THIS!!!!!!!!!!! If people could only see inside of me....trust me I am not fine!!!

Ok I am going to end this because I am done and am going to focus on getting in the shower....that could take about 2 hours.....hahahahaha                                                                                                    

Best part of the day...

O well I didn't take Daisy for a walk yesterday. My friend got stuck at work.......but then again I ask myself why didn't I just take Daisy for a walk by myself? I need someone to motivate me, get me going! Well today if my friend can't walk I will take Daisy for a walk, it won't be as long but it will be a walk though....:)

I did have a bright spot to my day yesterday.....it was a brief period in time where I would swear time had gone back 8 years. Jim came home for lunch and before he left to go back to work we had a moment and it reminded me of when I was feeling good!! I laughed and giggled and it was over something silly, Jim was playing with my face making silly noises. Trust me it was a moment and I can't get it out of my mind....it just made me smile and laugh and it made Jim smile....I will take it!!!!!!!!!!!

Today is going to be a good day.....I just hope to get past this major hip pain!! It has been waking me up but today is the worst yet. Both hips are a 10 on the pain scale........maybe a massage is calling my name....:)

Good news.......

I am happy to report that Social Security has seen fit to continue my disability......:) with the right to come back and review my case again??? I am very happy, relieved and yet sad at the same time. I NEVER thought in a million years I would be this person I have become.
I was on fb last night and was talking to a young lady that used to work with me when I was a district manager for Claires. I started thinking about the old me and how much fibro has changed me. I have really been missing the old me alot lately!!! I was a district manager for 15 years, I worked hard, I worked alot and I was good! I can honestly say I had some of the best managers thru the years and was proud to see them grow....I worked along side some of the best district mgrs and some of my best friends.....I will love them forever!!!

This past weekend I woke up and just wanted to role over and snuggle with my hubby but my body was not cooperating with me......as usual! I am sooooooo tired of waking up and it taking me about 2 hrs to get my body and my mind going. There is a commercial on tv and it shows this couple and they are eating breakfast in bed and they look at the alarm clock and they playfully roll around in the bed....every time I see that I think about when I was healthy and Jim and I would wake up and start our day with laughter and smiles too! I sooo miss the old me and I know Jim does as well!!! When I wake up it takes me about 2 hours max to become at least some what human..:(
Then once I am human it can take me a bit longer to get going...I move so slow these days, my body movements are slow and I HATE IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyone that knew me 8 plus years ago knows that I could run circles around anyone and I could look good doing it...haha!

Sooooo I am going to try my best to do what I can to make myself feel better...I had lost 30 pounds a couple years ago after being on Lyrica and was feeling pretty wonderful. I think if a person feels good about themselves and likes what they see in the mirror it can really help with all the pain and all the other garbage we deal with! I have put 10 pounds back on and with my short body it feels like 40 pounds. (include a bad case of IBS and feeling terrible in the middle and I feel like I have a 40 pound brick in my stomach to boot) I keep seeing these ladies on tv or in a magazine and I can remember feeling the way they look. Does that make sense? I have a skinny person (ok a somewhat skinny) trying to get out of my body..SO WHY CAN'T I STOP EATING SUGAR? I hate that my will power is in the toilet!! I will talk to myself everyday! Tell myself don't do it and then I do it anyway! Is it my
pain? I have got to get off of this rollercoaster ride once and for all...summer is coming and I do not want to wear a one piece bathing suit! I have a membership to the YMCA, so why can't I make it there everyday? I know that my energy level is in the toilet but if I could just get on the bike.....I mean being able to sit and pedal....what more could I ask for? But I am going to be taking Daisy for a 2 mile walk today...:) probably all I will do today. Thank you Jennifer and Bella...:)                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      

Happy New Year

Happy new year to everyone.....may all your resolutions last longer than 30 days!!! 

It has been a long time since I written anything and even then I had gotten pretty consistent. I tried, I really tried to write every day and I have several reasons for not doing it and they are....1. got tired of complain about the same pains and fatigue everyday 2. was too tired to write 3. my mind just wouldn't let me write! What I really mean is I just can't seem to focus...I am the person that used to love to read a book a week and now I can't read 1 page without having to read it over and over again. 4. I would be all ready to blog, have everything in my mind ready to type it out and BOOM....nothing, my mind - it just wouldn't come out. 5. I start to type and am falling asleep within 5 minutes of typing, doesn't matter what time of day it is.
Now I know that most people will read this and say that they get like this some days and it is just part of getting older and then laugh it off. Trust me it is not the same on soooo many levels! I can't explain it here but for those of us that suffer with fibro, fibro fog  and CFS, we get it!!!

January 7th*************************************************************************

The reason I am writing after sooo long is that I am totally blown away by our social security - disability system. Did you know that they think fibromyalgia can be cured??? Well they do and I am proof that they do. I was approved for disability a couple years ago and then I received a letter in the mail about 2 months ago saying that they are reevaluating my case to see if my symptoms have gone away. Not the exact words but the words they used did state to see if I was cured!! As usual I had to fill out a bunch of paper work, Jim had to fill out paperwork and now they have me going to see a doctor that they have appointed. The doctor is at a walk in clinic....I did ask if he knew about fibro????I am curious what he does know??? Disability is saying that they need his medical opinion in order to help make their decision!!!! How can a doctor that meets with me for a short time that has never met me make such an important decision???

They don't see me on a daily basis....they don't see me laying in bed for 1/2 the day, they don't see me jump when my husband just gently rubs his hand on my skin, they don't see me take daisy for her first walk in the park then come home and go to bed for 3 hrs, they don't see me wander around the house because I don't know what to do with myself from hurting so bad, they don't see inside my body when I have to JUST get out of the house so I run a few errands and the pain in my ankles is so bad it feels like they could snap! I hurt sooo bad but I need to move because sitting still or laying down just kills me. They don't see me hobble down stairs to take my pain meds in the morning (o how i am learning to hate the stairs in my house) there are many mornings where Jim has to get my meds for me.....when I go down stairs I have these 2 very precious animals that want to be fed and 1 that needs to be let out to go potty...I hobble outside and all the while praying that daisy will make it quick. They don't see me after I have taken my meds (if I was able to go down stairs) go back up stairs and crawl back into bed and stay until at least 10:00 / 11:00 depending on how bad I feel. If while in bed I have to go potty well then I am in trouble because I am more likely not going to get up. I am so blessed because daisy has gotten into the habit of coming back up stairs with me and crawling into bed with me...YEA!!!!! They don't see the pain in my hips. I have had shots twice in both within a year. As I am typing this I keep moving my legs because the pain and the burning in my hips is so intense!!  They don't see me when my hands, arms and shoulders hurt so bad that sometimes I can't even hold things....My hands get so weak, the tinging feeling that I get in my hands...... They don't see me not take a shower for 2 or 3 days because I am hurting so bad or just thinking about the energy I will have to use to take a shower....My standard wardrobe is workout pants and t-shirt. They don't see me get out of bed about 10 - 11, roam around the house for a bit ( I am usually hurting but can't stand being in bed anymore) Jim will come home for lunch and then I will try and go to the YMCA. Sometimes that happens and sometimes it doesn't.....:(
 They DON'T see the PAIN that's in my body 24 HOURS a day, it may be a 3 or a 10 but trust me it is there!!! Right now as I am typing this my pain is about a 7! My legs, necks, arms and my ankles are killing me!!

I could keep typing and typing about how much I hurt every day but you still can't see it!!!

I can talk about how I don't remember things from moment to moment but unless you live it you really won't get it! It is not like a "normal person" forgetting something! I will be talking about something and then all of a sudden a brick wall will go up in my brain and NOTHING / NO thought is going to get thru!!

My body crashes are happening more frequently. I am on a new medicine that is supposed to be helping me stay awake. In a way it is helping, by that I mean I am not taking as many afternoon naps but my body still shuts down thru out the day without notice. The really bad part to this is when I am driving!! I really have to pull over when this happens!!! When I say I can't keep my eyes open I mean it....I can be walking and this happens. This has been happening for the past couple years just more and more....hahahahahaha.....I was talking to Jim for a second just now and in the middle of me talking to Jim my words start to slur and I slow down and start to sound like a recording that is going bad....like the battery is dying. Then my eyes start to slowly close and then that is all she wrote and I am out for a bit!!! I can go days with out this happening I think. I really need to start writing this down to see if there is a pattern?????

Energizer bunny

Energizer bunny

                How many of us used to have toys when we were kids that ran off of batteries, do you remember when energizers first came to market? I was ecstatic they would just keep going and going and going, the commercial said so, I begged my parents for those batteries so I could drive my remote control car for more then 5 minutes at a time with out having to recharge them or replace them.  Well now I am an adult and I wish they could make some type of batteries to keep my wife from being so fatigued.  I mean she is just like the old toy, we will be talking and all of a sudden I see her eyes start to drop, she fights it and then the speech becomes slow, then the words become slurred. I usually reach over and turn the switch off on her (tell her I love her and that she needs to close her eyes and sleep for a bit) after about 20 minutes her eyes pop open and where ever she was in the conversation she is right back at it never skipping a beat until the charge wears off again. Wonder is they should take fatigue out of CFS and replace it with the word energy.  It’s a learning process to be able to have a deep conversation and be in the middle of making a point to have to turn the egg timer and wait for the recharge, but it’s worth it, no need to get upset or frustrated as even a person in great health needs to recharge the batteries from time to time.  All we can do is hope that one day the energizer bunny will figure out a way to help with energy for all the sufferers of chronic fatigue syndrome.