Reflections

The blog had to take a back seat for a while.

Not that I didn't need to say things, get things off my chest or share. I just couldn't make this a priority. For a while, the only priority has been one day at a time.
Now, that said... it's still one day at a time and there are a lot of monsters under my bed at the moment. But, in learning to accept those monsters and deal with them, I've also realized, the intention of this blog was to share things with those who cared to read them.

We "we being a collective unit of spoonies" just recently lost a light of ours, a pillar of strength and encouragement to those of us who suffer from chronic and invisible illnesses. That loss was felt worldwide, in a community of support and encouragement.
I feel this loss deeply and keenly. The incredible woman that we lost, was only 22 and it was sudden, with no warning or expectation, no chance for reflection. I would say no chance for preparations, but, when are we ever actually prepared.
It did bring about the poignant realization, that time is fleeting and the moment to share, to love and to laugh comes and goes to quickly.
I think this has helped me to realize, that today is the day to share. The day to say what should be said, needs to be said and accept what will come.

These things said, I would turn this entry into a wandering tour through a couple of months of hell, left to my own devices. That... would be better targeted into smaller sections and under separate posts. I've learned a lot recently, accepted even more and embraced a lot of faults and fallacies in the last few months.
I think these things bear reflection and sharing.
That, that should come soon.

For tonight, I'll accept reflecting on how quickly life can pass, how fleeting it can be.
We accept a lot of things in our lives of chronic illness, things that might be a big deal to others, can be come commonplace and everyday for us. Sometimes, we don't look at the serious and devastating as such, because we live with it every day.
I don't know that the loss of such a beautiful soul, will change that for us. Because if it did, every day would be panic. And we can not live like that.
However, the loss of a 22 year old woman, just starting to live her life, will and should remind us all, to appreciate each and every day, each and every moment, each and every friend, family member, loved one...
Looking through the thoughts and sentiments shared, among so many who knew her, reminds me to take a moment to say "I love you" to those that matter. To turn a blind eye to those who don't. Because, to waste a moment granted to us on resentment, hatred, jealousy or bitterness, is to waste a moment of time, never to be brought back.
I like to think, the most valuable lesson that I will take from Alexa's passing is this...
To appreciate each moment, each breath, each heartbeat. To let go of the pain, the sorrow and the frustration of what we face and EMBRACE the day we are given.

Embracing Limits

A struggle is coming!
Unfortunately, that struggle for me, has been an ongoing battle for many years.
I am working to embrace my limits.

The reality of it is, I have tried for years to avoid being ill. I have worked hard to be successful, I have worked hard for the things I want. I work hard for the sake of working.
Unfortunately, all that has brought me is, the realization that I can not do that forever.

I happily accept my pagan beliefs, struggle to embrace the teachings of Buddha, strive to be like my dogs and work harder than I would ever expect from anyone.
The hardest thing I have ever done, is admit that I have limits.

Limits are for people who don't know how to push them selves. They are for people who don't want to push a little harder for success. Limits are for people who don't want to know exactly what they are capable of.
Ok, that's actually bull shit.
The reality is, limits are for people who are smart enough to know when to say when.
Apparently, that has not been me.

Recently, several things have added up to make me realize, that I have to embrace my limits.
I have to accept when to say when and I have to be smart enough to realize... I can not do it all.
Not an easy path for me, I assure you.

I have however, started to take steps in that direction.
Work has always been an all consuming drive for me. It has always been my solace, my balm, my reason for... so many things.
Unfortunately, it has also been a driving force for my deteriorating health.
So, with that in mind, I have started to take steps in putting myself first and accepting that there are limits to what one should expect of themselves.
So, I start the journey of accepting and embracing that I too have limits.

Well, That Was Dumb

Ah! The joy of stupidity!

Nothing haunts a person with chronic illness *(commonly referred to in my world as a spoonie)* like the changes in medications or doses, that make you feel like you can conquer the world!
Because then we do really stupid things.
Things that "normals" *(people without lifelong chronic or invisible illnesses)* do on a regular basis, without thinking about how some of us get things done.

Which leads to a holiday weekend. Where I think I can cook multiple briskets, ribs, beans, etc, etc, travel to my parent's house, visit with family and friends. Come home and decide that maybe I could tackle the world... I mean yard too!
Why not? I feel GOOD!
Oh, oh! Oh!
I see... I am an idiot.
Because I already know medication changes can make me feel like I am GOOD! HEALTHY! CAPABLE! Like I can live a normal life. I have, even after all this time, still found myself forced to find out the hard way if things are better...
Idiot.
But, for me, I did get a lot accomplished this weekend. For a spoonie I did a hell of a lot! Even if a "normal" would have had it all done and done in much less time.
I only finished about 1/5 of the brush cutting that I wanted to do. Carefully limiting my time in the sun, lots of water, frequent breaks and I still have wonderful things to show for it.
I have a great case of sun hives - in spite of the benadryl, jeans, boots, heavy duty sun screen and a load of prednisone.
I also have a great case of the shakes! Brought on by heat. Had plenty of water. Took plenty of breaks.
There is a reason the vampire doesn't go in to the sun! It is called hives and shakes!
Several hours of shakes now.

On the other hand, honestly, I am thrilled with all I accomplished today!
The down side is, my period of "OMG I feel GOOD" is gone... maybe I could have given it a few more days, seen if I continued to feel better. Unfortunately, the idiot in me still runs from the house screaming in glory when a medication change makes me feel good!!!

If I was smart, I would quietly pick up my cane and stroll down that road, maybe the euphoria would last longer!!!!

Me, Not You...

Ah, here we are again.
Long week brought long bouts of insanity.

That being said! Here are some moments of reality. My last week on at work, brought about a lot of negative energy I wasn't ready for. The vast number of people I am exposed to on a regular basis, who are negative in their thoughts and actions is not something new.
However, my reaction to it this last week was rough. I found myself in a state of perpetual "glass half empty" mood. I saw it, realized it, but couldn't seem to shake it. It was obvious enough, that even my overnight partner at work noticed it and called me out on it.
I wasn't "ugly" or "rude" or anything, just very quietly negative.
For someone who is always... "Ok", "Great", "fine", or the one who always says, it is what it is and it could always be worse... It was a change to be so wound in to darkness.
The negative, rude, depressing people I was surrounded with on my last week on, left me feeling bereft of my usual abilities to deal with what life had thrown me and bounce with it.

So, the end of my week on was met with... "ME, All about ME time!" For about 36 hours, I refused to deal with the outside world. No phone, no text, no email, no messaging, nothing... Unfortunately, my poor husband bore the brunt of some of that.
Fortunately, for me, he knows that when I can no longer handle the cards dealt, I shut down and work hard to restart myself.

My down time was not met with such great enthusiasm. There are forces in my life, that sometimes forget that they can be and will be included in my, "NO, it's all about ME time, right now."
I wanted to feel guilty for the 19 phone calls from loving family members that I didn't respond to. The number of phone calls from family that my husband had to deal with, because I wouldn't. I even wanted to feel guilty for the not so nice things I said to my husband, when he told me about the phone calls.

I didn't. I don't. I won't.

What does it mean to be perpetually sick? What does it mean, to know you will never be "better", that "normal" isn't something you can ever expect.
Well, it means a lot of things, to a lot of people.
Sometimes, to me, it means that I have to focus a lot of energy to stay positive, to continue to associate with "normal" people, to give my time to family and friends. It can mean, that in light of generally negative people surrounding me, I have to fight to stay above that never ending spiral of despair.
Just because I don't "look sick" doesn't make me any less ill.
Just because I continue to try to find my happy side, doesn't mean that I'm all rainbows and roses in there.

I walk and talk, I smile and laugh, I joke and love, I work and live.
It is not easy.
Easy would be to crawl in to my little hole of despair and stay there.
It takes a lot to focus myself and keep moving forward.
Living is what is hard.
Living when you are forever ill, is even harder.

So, when I take time for me, to re-center myself and put my brave face on, to shake off all the negative energy from around me, to let go off all the slights and insults, the realities of being forever sick...
When I take this time and hold it close and sacred and refuse to let anyone in, it really isn't about you.
It really is, about me.

Selfish has nothing to do with it. This is my life, my survival, my decision to keep facing my illness and not let it take control of my life. This is me, trying desperately to avoid that spiral of despair that can so easily consume those of us that live with a life long illness.

This is me, making my decision to do the hardest thing of all.
Live!!!

The Reality of Work

So, work is work.
Some people take it for granted. Some people think it's the greatest thing on earth. Others do it for a paycheck. While others absolutely hate doing it, for any reason. And yet, there are others who just don't do it.

I work.
That's the reality of it. I work, because I have to. I work, because I love what I do. I work, to work. Sounds strange. I really do work, just to work. I am completely blessed that I have such a raging passion for what I do. I'm lucky enough to get paid for it.

However, a lot of people with illnesses don't work. Some look on in awe, while people with illnesses work. Others, have never realized that their co-worker is sick.
Why?
Simply put, because you have to sacrifice to work when you are ill. Sure, a lot of people find work... well... work. But when you are 'normal' and you work, you look forward to your time off, time with friends, time with family, cooking meals, bar-b-ques, outings, movies, shopping, what ever your pleasure is.
You may leave work, go to the store, come home, cook, have a meal, maybe spend time with kids, spouses, friends or family. You may go out, spend time with friends. Go to a movie.
Then you have your normal night time routine and off to bed you go. Up and do it all over again the next day.
You always have that "thing" you're going to do to look forward to.

When you are ill, will always be ill...
sometimes you have to choose. Will I work? or will I strive to have some form of life for my family?
Because we can't have both.
IF we work, it is what we do. We get up, take what energy we have, pour our illness down our throat, hide it from our faces, force our bodies to move in spite of sometimes crippling pain, put a smile on our face, stumble through our routine and head to work.
Without a lot of the normal routine that 'normal' people have.
No fanfare. No glory. No shower. No hair curlers.
Simply because you can't raise your hands above your head when you first get up. Certainly can not grab rollers or curing irons. Sometimes, we can't tie our shoes. Other times, spouses may dress us to help us get out the door. They cook too, feed us.
Then a handful of pills down the throat.
Out the door we go.
We put on a smile, try to move as normally as possible, try to concentrate on our work. We strive to give the best that we can. Because we committed to working and we are committed to what we do.
Pour a few more pills down our throats.
Eat, if we can keep the food down.
Struggle to work some more. We keep forcing that smile on our faces, we work side by side with our co-workers, we socialize, try to keep the pain, the vomiting, the hurt, the disease from our face.
When it is done for the day.
We go home.
Most of us take some form of medications, yet again. Pour more pills down our throats.
We are to tired to move. To tired to cook. We certainly can't clean.
The pain or nausea, upset, aches, fog, disconnect, stress all add up, to ensure that our bodies are no longer functioning. The thought of food, may make us so sick, that eating isn't possible.
If we are lucky, our spouses feed us. Or we grab something quick, easy... maybe the microwave, maybe soup, possibly some yogurt, what ever will get us by. Because we are supposed to have food in our stomachs before the next round of pills.
Movement is no longer an option.
We crawl in to bed, pray that our bodies and minds will give us a moment of rest. Maybe we will sleep. Maybe we won't, more often than not, the pain is so bad, the mind is working overtime, the medications are making us sick or we just can't settle in to a comfortable position to stop the throbbing.
So, we might get 2 or 3 hours of sleep all said. We might also, if we are really lucky, get 6 or 7 hours! It's like a dream come true!
But, if the pain is bad, there is no REM sleep.
We just muddle through it.

To get up and do it all over again.

So, why would you work? Why would you sacrifice the small amount of possible time and energy your body gives you to work? What would possess you to drag yourself out of bed, to suffer, to make yourself sicker, just to work?

For some of us, it is because what we do is our passion.
And have you ever seen what disability pays? You certainly can't pay your doctors, buy your meds and keep a roof over your head with that.
For some of us, it is because we love to work.
But, we sacrifice a lot, just to do that.
Sometimes, it is to just "feel" like we are 'normal' again.
I'm not sure, if we do it, with the hopes it will all be better some day. I think I long ago determined that it won't be better. Yet, I really can't imagine, doing nothing. Except, because I am sick, I don't do anything. I do work, though. Love, passion for what I do, forces me to keep going.

What would I have, if I didn't have that?

11 Years Brings Me Here!

So, a bit of a continuation from my last post.
Most of this, is just so you know where I came from to be where I am.

About 11 years ago started a journey. One that would bring me here, but also took me to my past.
I was a lot of things, in my previous life. A lot of things that I would have to learn to accept that I was no more. Now, I am still a lot of things, just different than I was before.

I started to get sick. Ok, that's not true, I had always had a habit of getting sick. I just wrote it off to long hours, high risks, little sleep and an all consuming drive to be successful. Unfortunately, I did that for a long time, before I realized I was really sick.
Fast forward to the point that we realized there was actually something wrong. I had all the classic signs of an over achiever. Insomnia, gastric upset, gastric reflux, diarrhea, aches and pains, trouble concentrating. Cue doctors: you're just getting older, you're not so young any more, you do to much, you work to many hours. Except, I wasn't working nearly the number of hours that I used to. I was only working one job instead of three. I was also only 28 years old.
Then, then came the awful swelling of my hands and feet, intolerance to heat, sweating up a storm, the fatigue became so much worse, the GI issues were a catastrophe. I was in and out of the doctor. One doctor told me I was aging, one told me I had chronic Mononucleosis, one told me I was over worked and needed to go out on disability. By the time I was only able to keep water and plain pasta and plain bread down, we knew I had a real problem. Then began the search for a doctor. One who would not write it all off.
Once we found one that would actually pay attention, reviewed everything that had been done. He said, you need to realize you are sick. Really sick. There started tests, visits with specialists, more tests, more tests and more doctors visits.
I was becoming the "Professional Patient"
Tests started to show a lot of abnormalities. Later, we would find out that I hadn't had a normal white blood cell count in years. Later, we would also start to put it all together and realize I had been sick for a long time. Likely my whole life.
Fibromyalgia was the first diagnosis. After that, several other things started to fall. I had high Rheumatoid Factors, evidence of Auto-Immune abnormalities, evidence of perpetual muscle trauma and breakdown.
Medications came and went all in a struggle to make me feel "normal".
Surprise! I was never going to feel normal again!
Then came a wonderful Internal Medicine Specialist.
He said to me at one of my visits. "Here is my goal for you, we can't 'fix' you, there is no 'cure', what we can strive for is that you will feel like shit for the rest of your life." Me: blink, blink, blink. He continues, "But, I have to tell you, there will come a day, when feeling like shit is really pretty damn good, compared to how you feel now!"
Guess what? I still see this doctor. And every visit starts the same.
"How do you feel?"
"I feel like shit!"
"Shit feels pretty good, doesn't it?"
Yeah, yeah it does. Because I usually walk in to his office under my own power, after I have gotten myself out of bed, eaten food and driven myself to his office, sat down in a chair and actually on a good day, crossed my leg. All things, that I had gotten to the point that I couldn't do on my own, before him.
There is a great drug cocktail at work here, my husband says I rattle when I walk. But, after a lot of trial and error, there is a cocktail that works for me.
Is it perfect? Oh, no! It includes frequent bouts of dry heaves, lots of sleep, lots of lemonade to keep the taste out of my mouth and stop the dry heaves, days where the pain is excruciating, days where sleep is the only thing I long for and can't find. Days where sleep is the only thing I can do. Bad days where I need my cane to get around and go shopping. Days where I just want to be 'normal' and have to remember that 'normal' isn't what I was meant to be.
Is this the end of it?
Nope, this is just the beginning. This is just the point, where I have started to accept that it will always be like this and I have to make decisions to protect myself, my health and accept that I will always be sick.
You would think, 10 years would have made that possible.
Somewhere, in the back of my head has always been the belief, that the right drug, the right diet, the right doctor and it would all magically be better! That I would be who I was.
That's just it, who I was. Not who I am.
Who I am is a disaster, a blessed disaster. I will forever be sick. There is no magic cure, no magic pill, no magic diet.
Learning to LIVE, in spite of it all, is the hardest thing we will ever do.

Welcome To Me

Back to the world of blogs.
It has been years since I blogged. I seemed to do a lot of this, when I first got sick. Then, it didn't seem so important. Now, though, I think I've missed a lot of time, thoughts and opportunity to share what I have gone through.

So, welcome to me. I have been on a journey, a journey to become myself. Not my illness. It is so easy for those of us who live our days with a chronic, invisible illness to become what we are, not who we are.

I was reminded lately, by a comment someone made to me, that I always thought of my health problems and limitations as a blessing. It was a blessing, because I learned to love and appreciate so much, to be grateful for every day. I learned not to take for granted what 'normals' do.

I know, an explanation please?
Well, through this journey, you'll start to get that explanation.

Basics, basics, basics!
Over 10 years ago, I started my journey to find out, what exactly was wrong with me. It's far from over. It's far from glorious. It's pretty much a living disaster.
I'm not sure I would have it any other way. It made me who I am becoming.

We'll start this journey a long time ago, with bits and pieces of today and yesterday and tomorrow thrown in. I hope you're good at dancing, because that is what this is. A dance, that became my life.