Sleep, beautiful sleep! Well, rest, beautiful rest.

Sleep, beautiful sleep! Well, rest, beautiful rest. I was sleeping before but not resting at all. Now that they changed my meds I am resting. A lot. As in day and night all weekend. I just hope I get caught up before school Tuesday!

Boo has really been a trooper and slept in “Big Bed” every time I wanted to. LOL

I did take some pictures for one of my assignments today. And I managed to work on a paper and here I am blogging. Im a Beast! 

What do I feel now?

[BLOG TWELVE]

Only since being diagnosed with fibro, have I realized that I can't tell when I am tired because I'm tired or because I’m hurting. I spent the majority of my time in bed because I thought I was tired but it’s possible I was just feeling so much pain my brain was too tired to feel anything but tired. That is just a guess.

Tired makes me feel fibro, hunger makes me feel fibro, and possibility my asthma makes me feel fibro. And countless other stimuli make me feel my fibro. This I know; too much stimuli, too much noise, too much doing/thinking makes me feel fibro pain. Too much stress will make me feel it too. 

The past few weeks I have learned that I also can’t tell if I am hungry or in pain. I just know I feel bad and it’s a guess if I need to lie down or cook something. And since the bad feeling comes on gradually from “level 1” pain to level “H. E. Double Hockey Sticks” pain it’s usually too late to do anything to really get the pain to go away.

Sometimes I know I am hurting because I can’t be still and concentrate. (You can tell I wrote some of these blogs when in pain because they sound jumbled.) I twitch, get up and sit/lay down, shake my hands, wring my hands… there is constant movements.

I can’t seem to control my temperature. I will be cold but I don’t know it, I just feel fibro pain. It’s like I have a bad case of the flu and can’t get warm, or I sweat for little or no reason.

The answer is not a schedule of sleep and meals (sorry doc, you’re wrong about this) because I never have the same stress/stimuli (life is fluid like that) so how do I schedule for that? How will I know in advance when I will be hungry or tired or simply hurting?

For all I know pain or tired may not be the reason I feel bad. It could be something I haven’t thought of yet.

The patience of Job

[for BLOG ELEVEN]

I have always prayed “Dear God I do not want the patience of Job! No thank You!”  Meaning I did not want to go thru what Job went thru, especially when he lost his children! 

But I seem to have become Adam who said, “Lord, that Fibro (Adam said woman) that You gave me has caused all this trouble. The trouble is directly linked to You, God. 

(NASB version: The man said, "The woman whom You gave to be with me, she gave me from the tree, and I ate.").

Basically Your timing, God, in my life cause me caused all this trouble.

I know the Bible says God is perfect and that His will is perfect, but you can’t ever convince met that giving me Fibromyalgia before I had children and before it was even names as a thing that people had for real was in any shape for or fashion good for me or the children. The children that always belong to God and I was basically just babysitting for Him. And He knew all along that I was sick, what was wrong and how to heal me, for their sakes and He didn’t.

How do I reconcile that with God is a good God and God is Love?! And all the other wonderful things God is?

I just don’t know.

Fibro Frustrations

Fibro Frustrations

I have more Fibro symptoms if I get frustrated, and that frustrates me.

frus·tra·tion

frəˈstrāSHən/

noun

noun: frustration

1. 1. the feeling of being upset or annoyed, esp. because of inability to change or achieve something.

The thing about knowing how bad I feel, how I can’t do something well and knowing it’s never going to end is frustrating, heart breaking, and down-right daunting.

I have decided frustrations frustrate me. By that I mean getting frustrated bothers me immensely. It just causes me more frustration and it snowballs.

I try to take a step back and take a deep breath but nothing seems to help. Where is my calm?! I need some calm now! >.<

Amanda’s method of not sleeping …. Again!

[for BLOG TEN]

Amanda’s method of not sleeping …. Again!

I picture myself drawing numbers on a chalk board, I have to see the number to move to the next one. Tonight went like this: Okay, here is my...no that’s a hood of a Packard going under water with its high beams on....ok, chalkboard...why was I thinking of cars under water....never mind, chalkboard....Susan Smith! Grrr don’t get started, ok, CHALKBOARD! Now Onnnnnnnnneeeeee.... *sigh* don’t see it.one, one , one…good enough, its just the lines where my eyes moved, but I’ll take it. Twwwwooo, twwooo! Three, that three looks squished… Three, Three... I was cutting a rug down at the place called The Jug with a girl named ah Linda Lu when in walks a man with a gun in his hand he was looking for you know who, *waves fake gun around* he says hey there fella with the hair color yellow, what cha tryin’ to prove?! That’s my woman there and I am one to care that she might be off with you! EXCUSE ME! …  http://youtu.be/of5aylTtkPU

((This will change every time I try to get to sleep))

alt vid
http://youtu.be/SM3jgkChV6M

I’m afraid it’s starting again.

[BLOG NINE]

I’m afraid it’s starting again. =P

The all over pain and restless limbs and electric skin. *sigh*   

I was hoping it was tired. Just tired, but no. I have slept a lot and it’s still there. I want to go out and work on my class work or take a nap, neither of which I feel like I can do. I have started and stopped this several times already.

The rest of this is a few days later.

I put on 2 pair of socks, sweat pants, long sleeve shirt, and crawled under a thick quilt and electric blanket that was on. After a lot of sleep there I feel better.

I have also noticed that I start feeling bad if I don’t eat. So much for dieting. =P 

Random thinking doesn't help me functun well either. =P

Dropping Classes

On my way to class today I went by and dropped the 2 Public Relations classes. I could cry. I wish I could do all that I want to do. It's not just the pain and fatigue that slowly kills me, but it's loosing chances and not being able to do what I want to do. What normal people do. *sigh*

Meds, meds and more meds….

[BLOG EIGHT]

Meds, meds and more meds…. That’s another thing I hate about this life with Fibro; taking medicine. And I mean lots of meds to try to control the pain, fatigue and everything else that comes with Fibro.

One is making sure you take everything when you are supposed. Some meds may be daily, 2 daily or more. Then there is twice daily and the ever confusing 3 times a day.

Second there is how to remember when and how to take the meds. Take with food or not? At meal times or 8 hours apart or when? And once you know when, how do you remember when Fibro causes you to sleep/nap odd times, and be awake all night or not remember to eat.

Third there is when medicines stop working you have to get a new medicine and a new schedule. And then integrate that medicine into the schedule you may have only worked out last month or last week.

That is when you realize a medicine isn’t working, sometimes you don’t, sometimes the doc tells you the reason you are feeling XYZ symptoms is because your body has adjusted to a medicine.

Having a large number of medicines can cause this adjustment happen regularly through the meds you take so that you are never really getting the full benefit of the medicines.

I hate medicine, but I need them and I am relieved that I finally have them. But a magic wand would be so much more simple.

I am alone

[for BLOG SEVEN]

 

This was written a few weeks ago and is not how I am feeling right now but I wanted to share it because I feel it's important. 

I am alone.

I have Fibro.

I have known for 1.5 years. I have not been pain free for the past 27 years. Hurting and not knowing why, not even able to verbally express how I felt, what was wrong other than I was tired put a strain on my life. In fact it destroyed it. Demolished. Shattered. Humpty Dumpty was I.

Eventually my body couldn't fight the pain. It was too worn down and the pain was too much to handle. I was mostly bedridden. I could sometimes be encouraged to do something but I would suffer for days or weeks after.

My husband told me I "was not fulfilling my duties as wife and mother” because I "wasn’t cleaning the house and watching the kids". He put me out (kept my things though) and I was left alone, sick with no one. My husband and daughter had said they bet I wouldn’t make it a month alone.

I almost didn’t live. At one point the doctor did tests and said I was “literally starving” and that my body was digesting it’s self. I wasn’t surprised. I could barely lift a plate or glass of tea with 2 hands. How could I shop and cook?! I had to buy thin plastic plates to be able to pick up a plate to eat. Cooking was a frozen pizza while I rested as it cooked. And that was once a day. I couldn’t do any more than that.

I was so sick by the Fibro and my broken heart missing my family I could hardly lift my head. I missed seeing my children so badly that I was having hours of physical blindness.

The walk to class that should have taken less than 5 minutes took me 20 to 30 and I would spend all of class exhausted and resting for the walk back home.  I didn’t go out, I had no energy to.

The Fibro Fog was so bad it didn't take long for anyone who had spoken to me to avoid me. I don't have any friends, I was too odd. People thought I was special needs mentally. I am actually ... well I was very intelligent. Long ago. As a child. Now I can’t think of common words or forget what I'm talking about as I talk. I forget what I'm gonna say all the time. Not once in a while. All the time!

After checking on the computer what day it was, I would look at a notebook to see what I like to watch on tv that night. I couldn't remember. Even after weeks of the same show coming on at the same time on the same channel. I had my phone to alarm to tell me to get ready for class, what class and when it was time to go. Every day. Because even after weeks (months) of the same schedule I couldn't remember. Don't even ask me what your name is. I could not remember if my life depended on it. I have literally forgotten my own name.

I believe my brain was so overloaded with pain that nothing else could fit in there.

Who would want to spend time with someone who was in bed and tired all the time? (Of course had my family loved me, they would have gotten me medial help.) Who would want to spend time with someone who can barely walk? who cant remember your name after years of classes together? Who can't go out? Can’t do anything? Hurts all the time? Says random crap? Can’t remember everyday words? Who's family threw them away? How is that for an endorsement? My own child threw me away; put me out of her life and will never speak me to again. Yeah, who wants that person for a friend?

As I said: I am alone.

I am a Beast!

[BLOG SIX]


I am a Beast! and that's a good thing.

When my daughter was in high school and was impressed with how strong someone was she would say "He's a Beast!" 

Despite how weak I look being in bed for days or weeks, even months  at a time, I am a Beast. I fight pain and fatigue day & night. I have to live life under immense stress and some days I succeed. Some days I just survive the day and I am still a Beast. So those day I get out of bed and do anything are remarkable. 

Right now I am walking around with a broke foot and heightened pain. But so far I have made it to class and took some pictures for an assignment. Went to the clinic (and told them it was broke, they just confirmed it with x-rays afterward). I went to the store and got groceries. I climb 3 flights of stairs and I am a Beast. 

I didn't set out to be a Beast. This pain was thrust upon me. For decades I had no idea what was going on, but here I am, still alive and kicking...well when my broke foot heals I will be kickin again. lol 

But believe me, I wish I didn't have this pain,  it's not been a positive thing in my life in any way. Not even making me a Beast is worth it. I wish I had spent my life pain-free, Fibro free, Beast free. I wish I hadn't had so much pain I couldn't think straight. Wish I could have made better decisions, personally and professionally. I wonder what my life would have been like.  

Could I have been a success in a career that let me dress nice and meet smart people? People that I was able to converse well with. Would I be active in a sport or several? Would I do a marathon for charity? 

None of that matters because I am a Beast in this life I have. I won't ever get a chance to live that life I wanted because of Fibro that I didn't even know it existed. I just have to be proud that I am a Beast in this life I have.

I am a Beast, and *that* is a good thing.

I have a broken foot

I have a stress fracture on the top/outside of my right foot. Don't ask me how or when it happened because I don't know. It was sometime during the Fibro flare I just had. I was feeling so bad with the Fibro that I didn't care how bad my foot hurt. Sure I soaked it, even used Epsom salts, but the Fibro pain was worse... and all over. 
I felt like like I had spent a hot day running around an amusement park but with out the fun. There was a tingly exhaustion head to toe that wouldn't go away. I couldn't get comfortable. I couldn't think and my grades plummeted. 
I hate Fibro. I hate Fibro flares! They can be caused by something like doing too much, stress, weather or just happen randomly and you never know why. It's like every moment is Russian Roulette. You never know when it will strike, only that it will and it will take over what little life you had and wring you inside out. 

Boo is a super wonderful service dog

This is my service dog, Boo. He is a Psychiatric  Service Dog that helps me with my PTSD, Social Anxiety and Depression. He goes everywhere but class with me. So long as I get to class ahead of time and I am not in the halls when everyone else is, and I can sit in the front and pretend no one else is there, I do okay. But for places that are not a controlled environment like a store, I need Boo's presence. He has really saved my life and he keeps me moving with fetch even when I feel bad....maybe that's especially when I feel bad.

I hate Fibro!

When you are at the end of your rope, tie a knot and hang on! (Author Unknown)

[BLOG FIVE]

I don't think I have the strength to tie a knot. It's like everything is ending for me. No more financial aid so how am I supposed to live? I was barely making it with no frills and now I can't even make this month's rent, much less rent thru the semester and money for gas and toilet paper and such. 

I don't know what to do. I qualify for work study, but I can't work. I don't have the energy to make it somewhere each day and work for hours. I barely get to1 one hour class a day. If it wasn't for Student Accommodations I would fail out of school in the first few weeks. 

*sigh*

I hate Fibro.

I dont want to keep living in the condition Im in.

I don't want to keep living in the condition I'm in. 
Chronic pain. 
Pain everywhere.
Pain all the time.
No way to get comfortable.
No way to be comfortable
Nothing soothes.
Nothing relieves. 
There is no respite.
Even in sleep I hurt.
I dream of pain.
I wake up tired.
I wake up exhausted.
I wake up in pain.
I know I will do this again and again.