Living with Limitations

I didn’t do everything I wanted to do today, but I did do something.  I’ve learned to let go of the disappointment in myself when I can’t do everything and appreciate that I was able to get out of bed and do something no matter how small.  People may look at me on days like this and assume I’m lazy, but because I know what I have to live with every day, I know that this is one more day that I didn’t give up and that’s all that matters to me. 

Learning to live with limitations is the hardest thing I’ve ever had to do and I don’t feel that I’ll ever fully accept it, but I’m trying.  I still have days I feel sorry for myself and then I get mad at myself for feeling that way.  I still have days I cry because I don’t remember what it feels like to not be sick and I still have days I just want to hide from the world.  Despite those days I keep on keeping on.  That’s all any of us can do…Keep living and keep fighting.

The pain is really bad right now so I’m going to go cuddle with my heating pad.  I hope everyone is having a good day/night. Gentle hugs and lots of love. 

Happy Thanksgiving!

Happy Thanksgiving everyone!  I’m thankful for many things, even Fibromyalgia on most days, but not so much tonight.  The pain is keeping me awake again and I’m highly frustrated.  The last two months have been filled with back to back flares and my patience is wearing thin.  I just need a couple of good days so I can regroup and strategize my next move.  Yes this means war.  I’m tired and I’m cranky and if this monster doesn’t calm it’s ass down then I’m bringing out the big guns.  I’m not exactly sure what that is yet, but I’ll figure it out.

I hope everyone is having an awesome day/night and thank you for reading my random and insane thoughts.  Gentle hugs and lots of love J. 

Get Up and Fight or Let the Illness Win

The last few days have been a little on the difficult side. The pain has been absolutely insane and I haven’t been able to sleep very well. When I do finally sleep I have the wonderful pain dreams so as always I’m reminded that there is no escape.

I actually woke up today in a good mood, but there’s only so much pain you can handle before your nerves wear thin and the bad mood sets in. I’m so frustrated right now, because I can’t get comfortable and I have so much writing to catch up on and no energy or brain power.

I love the days when for a split second I’m able to forget that I’m sick. There’s just that moment that I’m doing something and I feel normal. It doesn't happen very often, but it’s the little things like that, that gives me the strength to keep on keeping on.

Everyone seems to think that if we don’t think about being sick, then we will be just fine and we’ll be able to work full-time, keep the house spotless and enjoy our favorite hobbies. They must live in the same fantasy world that the Lyrica commercials come from. I wish every damn day that it could be like that, but that’s just not how it is in the land of the chronically ill. I used to just shrug it off when someone would say stuff like that, but then the anger took over. Now I tell them to go slam their hand in a car door and see if they can ignore the pain.

Yes I tend to get a little on the bitchy side sometime, but if I don't stand up for myself then how can I expect anyone else to. Having a chronic illness is a battle and if we don't get up and fight every day then the illness is going to win. I refuse to let that happen.

I hope everyone is having a good day/night. Gentle hugs and lots of love.

Sleep Deprived and in Pain...What's New?!

The pain woke me up, which I figured it would because I was highly uncomfortable when I went to bed.  I’m surprised I fell asleep in the first place.  At least I got about a 2 hour nap. Hopefully I’ll have time for another nap before it’s time to start my day.  It seems this always happens when I have a lot to do the next day, or maybe this is just when I really notice it.

It’s hard living a life that is centered around Fibromyalgia.  Making plans is impossible and you never know when you’re going to get enough sleep to be able to function somewhat normal.  This goes for all chronic illnesses.  The illness has to come first no matter what.  The moment you try to push it aside is the moment it’s going to run you right over and there goes everything.  Healthy people don’t understand that at all.

This is just what’s on my mind at 4:30 in the morning.  I’m going to be so thrilled to go to work today, not to mention the hundred errands I have to run.  Oh well I have to keep on keeping on.  I don’t have any other choice, besides death and I’m not ready for that yet.  I’m way too stubborn to give up.  I won’t let this monster win.

I hope everyone is doing as well as possible.  Gentle hugs and lots of love.

I Hate Fibromyalgia Today!

It’s been one of those days that I despise being sick.  I accept being sick, but on days like today I want to stand in the middle of the street and scream f**k Fibromyalgia and all its little friends.  I slept okay I guess, but I woke up extremely grumpy.  As I began the process of taking all my morning meds that feeling of hatred hit me.  I hate taking all this medication that seems to make me more sick than anything else.  I hate waking up and being more tired than I was the night before.  I hate getting out of bed and having to prepare myself because there’s a 50% chance that I’m going to fall. I hate that it’s Friday night and I’m stuck at home because I’m hurting too bad to go out. I just hate everything about it sometimes and I hate that I have to despise something so bad.

Well tomorrow is a new day and I’m hoping for the best.  Hope everyone is happy. Gentle hugs and lots of love.

Horrible Night

These words, excruciating pain, heartbreak, fear, hopeless and helpless, and a few more explicit ones can be used to describe the night I had last night.  I’ve been sick for a long time and last night was the first time in a very long time that I had new pain.   Since it was a new, extremely intense pain I couldn’t relax so that caused me to have really bad muscle spasms, which made the pain worse and all this basically made me totally flip out.  I had a few anxiety attacks and my blood pressure got extremely high.  I really should have went to the emergency room, but by the time it got really bad I was so miserable and pissed off that I was afraid I would tell off or beat up a doctor or nurse before it was all over.

Anyways the point of this story is that even though I wanted to die last night, I survived.  I’m stronger now and hopefully I won’t have to test out my new found strength tonight.  I just want to sleep!  If any of you have any tips for getting through really bad pain nights/days please share them.  I rely mainly on music and various distractions like my really sweet boyfriend who always tries to talk me through it…sometimes nothing seems to help though.

I hope everyone is having a good day/night.  Gentle hugs and lots of love!

Always Strong Enough

Just when I think I'm not strong enough to get through the pain it seems like more strength comes out of nowhere. All I can say is that I'm truly blessed like that because nothing else can explain it. It's been over 2 years since this excruciating pain has knocked me to my knees over and over again. I had pain before and I still have that pain but it's nothing compared to this pain that hits me at the worst times ever. I've said it before and I feel it's worth saying again...I never understood why those with illnesses like Fibromyalgia chose to give up. I do now and that's the scariest realization I've ever had. If you are newly diagnosed with an illness like Fibro or if your symptoms have just started prepare yourself now because it will get worse. Save your strength, reduce your stress as much as possible and build a support system now because you might think your strong enough to handle it but when the really bad pain hits it changes you and it changes the way you think. Fibromyalgia as a whole changes you, and no matter how hard it gets I still believe it's for the best.

I hope everyone is having a good day/night. Gentle hugs and lots of love!

Help Me Fight this Battle or Get the Hell Out of My Way!

I spent another hour of my life trying to explain why you can’t compare two people with Fibromyalgia.  I don’t know why I waste my time.  I hate when someone tells me that so-and-so has Fibromyalgia and they work and they do this and they do that.  My first question is…How long have they had it?  My second is…What medications are they on?  If they can answer the questions then I tell them my story and why I’m different from that person or how I used to be that person a few years ago.  If they can’t answer the questions then I usually just say we’re all different and we all react differently to the treatments.

The last thing I thought I would be doing when I finally got diagnosed was defending the fact that I’m sick.  It’s ridiculous, but yet we face it every day.  I was thinking about it today and I started wondering how many of the Fibromyalgia-related suicides could have been prevented with just a little more understanding and support.  I’m to the point now where I’m saying either help me fight this battle or get the hell out of my way.  I don’t have the time or the patience for ignorance anymore.  I’m sick.  There’s no need to discuss it.  It is what it is.  Until you can walk in my shoes, you can’t judge my capability so don’t pretend you have me figured out because I assure you that you never will.

I hope everyone is having an awesome night/day despite the pain and all the other evil symptoms.  Gentle hugs and lots of love!

Is it Monday?

It has been a Monday on a Thursday all day today.  If I could get by with it I would never go to another doctor for the rest of my life.  I’ve been working on an application so I can get assistance at a clinic and I went today to finish everything and set up an appointment and I get there and I’m told they lost my application.  Now I have to wait till Monday for the girl who normally does all that paperwork to get back.  It’s really not a huge deal but it pissed me off to the point of tears for the simple fact that it took a lot of energy that I haven’t had lately to get dressed and make myself look good enough to leave the house and on top of the Fibro I have a severely sprained ankle that is refusing to heal.  It just took a lot of effort and to do it all for nothing made me angry.

People who aren’t sick hear things like what I just said and their first thought is oh my god can she get any more dramatic.  I know because I used to be that person.  I was already sick but I didn’t know what I had or the impact it was going to have on my life.  My aunt has Lupus and I thought she just used it as an excuse to get out of doing things.  Now that I know exactly what she’s going through I feel horrible for every thought and every comment I made about it.  I was one of the mean people that I battle against every day now.  It’s so easy to judge someone else instead of looking at your own faults and limitations.  I guess it’s just human nature, but it’s something that everyone needs to work on a little harder.

Well that’s just my ramblings for the day.  I’m going to continue sitting here with the heating pad on my back and the icepack on my foot wondering at exactly what point did I turn into an 80 year old.  I hope everyone is having an awesome day/night.  *Gentle Hugs and Lots of Love*

Pain!

The pain is horrible tonight.  It’s been pretty bad for the last couple of days and tonight it’s quickly becoming unbearable.  It still kills me every day that I can’t remember what it feels like to not be in pain.  If I would have known at 9 years old that my world was about to change forever, I would have done so much more.  I guess that’s pretty much everyone else’s story too.  At 10 years old my whole world turned upside down.  I went to bed one night being a healthy and extremely active kid and seemingly woke up with pain and frustration.  I really thought it was just the pain for a long time, but looking back now I also had horrible insomnia and anxiety.  It’s pretty obvious why pain, insomnia and anxiety travel together.  When you put them all in a 10 year old, they become a nightmare.  That’s a nightmare I’m still waiting to wake up from 22 years later.

It’s life-changing to the least, but regardless this is still my life and I’m going to continue living it the best way I know how.  The first time I typed the last sentence I left out two words. I’m doing that more and more.  Maybe I need to stop writing when I’m in a flare and the fibro fog is bad.  Don’t get me started on fibro fog.  The last few days I have felt absolutely crazy.  It’s frustrating!  I left out another word.  I should at least get credit for catching it, but it makes me wonder how many times I don’t catch it.  Oh well that’s a whole different story.  I’ll get into that when I can actually think and have a memory span longer than a goldfish.

I hope everyone had an awesome day or night depending on where you’re at.  Gentle hugs and lots of love.

The Insanity of Fibro

I had a pretty good day, but the pain is getting pretty bad now.  I’m in bed packed in pillows with the heating pad at the moment.  My spine feels like it’s on fire and it’s impossible to get comfortable with pain like that.  I’m having muscle spasms just about everywhere and those are never fun…except I still get a kick out of the muscle spasms in my boobs because I’m a weirdo like that.  I have to find a way to laugh at this insanity so it doesn’t break me down.  Laughter is good…especially on the really bad days.

I don’t talk about the specific things I’m going through very often because I feel like I’m complaining and that makes me feel weak.  I already have a weak body so it’s important to me to have a strong mind because that’s what keeps me here.  It’s literally a matter of life or death.  I shelter myself from the world a lot because I have to protect my strength.  I can’t handle drama, excessive sadness or anything like that.  People think I’m rude and that I don’t like to socialize.  It’s not that.  If I’m already feeling weak inside then I can’t risk losing what strength I have left. 

It takes a lot of strength to handle the pain and all the other insane symptoms of Fibro.  That’s how it is with any chronic illness, but some people don’t understand that because they’ve never had to deal with it.  It’s easier for them to judge and make false accusations than to try and understand what it’s like living in a world full of unwanted limitations.  We can’t change how people view us.  All we can do is be who we’re meant to be and live our lives the best way we know how to. 

I hope everyone is having an awesome day despite the insanity of Fibro.  Gentle hugs and lots of love!

I Hate Fibromyalgia!

Considering I just put myself and my feelings totally out there on my personal blog I decided to do the same thing here.  I hate being sick and I hate Fibromyalgia!  It is the stupidest, most retarded illness there ever was.  It makes absolutely no sense and then on top of that we get called crazy because we have it.  Most of us probably are crazy as hell, but it’s because we have been dealing with the insanity of our illness for way too long.

I get angry and I really try not to, but sometimes it’s unavoidable.  I know that this could be so much worse, but at night when the pain is really bad it does feel like the worst thing in the world.  It’s scary and lonely and that’s when all the emotion comes out.  I’ve prayed to die so many times and when you get to that point it changes you forever.  A few years ago I didn’t understand why so many of us give up and commit suicide.  I was one of those idiots who said “it’s not that bad”.  One night I found out why and now I’m reminded every day.  It’s bad.  There’s no other explanation needed…it’s bad…end of story.

I hope everyone is hanging in there today.  Gentle hugs and lots of love!

Fibromyalgia Poem

I find a lot of comfort, strength and hope in reading poetry, especially poems about fighting and surviving Fibromyalgia.  It’s easy to get depressed and lose hope, but we have to keep on keeping on no matter what.  So many with Fibromyalgia have lost their lives because they simply had no more strength to keep fighting…they just couldn’t bear the pain for one more day.  Those of us still here have to keep fighting for them because we can’t let them die in vain.

Here’s one of my favorite Fibro poems.  I’m sure I’ve posted it before, but it’s worth posting again because it says it all.

“Fibromyalgia is Real”

Fibromyalgia is real

There is no doubt

If you don’t believe it

Here’s what it is all about !

It’s about being a professional

At the top of your career

And losing your future

In less than a year

It’s about having unrelenting pain

No one can figure out

Having test after test

That shows nothing but doubt

It’s about knowing your pain is real

And fighting for your rights

Being so upset and frustrated

Getting no sleep so many nights !

It’s about trying to find the right doctor

Who can offer you some hope

Who knows what it’s all about

Who can give you what you need to cope !

It’s about learning to live again

With a whole new personality

Letting go of the person you once were

And facing a whole new reality !

It’s about losing friends and family

Because they think “it’s all in your head”.

But truth be known, there are days

You hurt so much, you can’t get out of bed !

It’s about setting new priorities

“So what if there is dust”

You have to take care of yourself now

And do only what you must !

It’s about holding on to hope

Each new day could bring a cure

It’s holding on to this hope

That will raise your mood for sure !

It’s about being thankful for the few

Friends and family that are true

Believing and hoping for a miracle

Praying for strength to make it through !

© 2004Kammy Salmon

I hope everyone is having a good Sunday.  Gentle hugs and lots of love!