How fast things turn around

I wrote this in two parts, the first part recently, the second tonight. I changed the title to something more fitting.

Well. It's been a while, and I'm feeling ok.
Good actually, rather happy. I'm surprised at that.
And I mean it, I feel I've met someone I can be me with.
I like being me, I can be pretty awesome sometimes.
We'll see how it goes.
It's only a matter of time though until its not enough.
I'm not enough.
Or I'm too much.
This is my life!

The pain's no better, in fact I think its worse, but I'm sucking it up and cracking on.
As usual. What else can I do?
I try my best to function, but sometimes it takes everything I have to just get up and breath.
Moaning isn't going to help in any way.
Being in constant pain, to the point you feel sick all the time sucks.
It takes the energy out of me as it is.
I'm always tired lately, and I always feel like I've had an hour in bed or on the sofa.
I feel like I spend half my life resting or trying to sleep.
I'm not negative, I'm grateful for that one hour!
And I can ALWAYS eat Ice cream.
Ice cream makes everything better!

Sure, I could up my meds more, but I hate feeling dependent on them.
I hate depending on anything.
Nothing ever lasts, and eventually, I'm gonna fuck it up sooner or later.
I'm good at that.

Yes I want some me time, I need to every now and then.
Its like my brain is a box of chains that have been shook up and got tangled and I need to unravel them.
All my feelings, my thoughts, ideas, plans all go to pot.
It comes across that I'm thinking of me.
I don't mean to seem selfish or let you down. Shit happens, life happens, it gets in the way sometimes, but I'm not always like this. When I'm good I am amazing!

----------------------------------------------------------------------------------------------------------------

I didn't post this because I think tempting fate can be a bad thing, but it turns out that I already knew what would happen.
Same as it always is.
Wooops, I broke it.
Shit happens.

I remember why I prefer doing it all alone, as lonely as it is, as good as it would have been.
If you aren't careful you can open yourself up to a lot of potential hurt.
It's better to quit when you're ahead.
The last thing I need is more pain.

Funny how your outlook can completely turn around in 24 hours.
Life happens.

How can it hurt so much.
I don't understand it.
I don't know how to make it stop.
Only you can do that.

My heart feels like it is in a vice.
Theres a lump in my throat.
Its stopping me from breathing.
Sometimes I wish it would.

My eyes tear.
My body shudders like I am freezing.
My fingers play with my hair to keep themselves occupied.
Yet I am addicted to you.
These are my withdrawal symptoms.
I crave you.
I need you.
I cry for you.

No one sees those tears, or hears my sobs.
I make sure of that.
Imagine that of one so strong.
One so vulnerable.
The vultures will descend soon.
I cant keep hiding this in me.
Its going to explode.
Explode or kill me.

And you could stop all this.
So so easily.
Yet you choose not to.
And still I suffer.
I doubt you see it.
I'm good at hiding things inside.
If you saw, I think you'd cry too.

Cheer up, you say.
I wish I could.
If only it was so easy.
You could fix it.
Make me happy.
Find the old me everyone loved.
And yet, you won't.

How can I feel like this.
How can it hurt so much...

Give me pain

"Make me cry"

The whisper came, barely audible.

"Make me cry, I need to feel something.
Something I know is real.
I need that release.
The endorphin's to rush through me.

The tears make me real.
The sobs cut into me.
Bittersweet agony.
I want it.

I want to be punished.
I'm too tired to do it myself.
I want to feel pain.
Pain above the pain I am already in.

Its like I am suffocating and I can't catch my breath.
I need to hear my heart beat faster, then I know it still works.
My breath to be rapid, so I am thankful for every one.
My head to go cloudy then I can finally think clearly.

I'm begging.
Just give me pain so I can move on...

I may not be normal, not exactly your typical woman.
However, I still long for someone to make me whole.
Make me strive to be a better person than I am when its just 'me'

One to think of when I feel alone.
One that thinks of me in the early hours.
Someone to hold my hand and keep my secrets.
Thats longs for and loves me as much as I do them.

My job isn't 'normal'
My lifestyle is crazy
I am wild
I speak my mind.
I say it how it is.
Im passionate and intense and full on.
Usually the loudest person in the room.
I draw attention to myself, I like it.
Im an entertainer, a performer.

I'm not the woman you take home to meet your family.
I think I get it finally...

I'm still me though.

Remember her?

Remember her?
The girl who always had a smile for everyone?
She would make time if she didn't have it.
She was always there for you.
She used to sing her heart out with joy.
In the shower, in the bar, in the street.
She wanted to dance under the stars and spin and spin until she went dizzy and fell down.
Her eyes used to twinkle with mischief.
Inhale deeply and hold her breath when she got excited, until she nearly feinted.
She loved, and was loved.
The world could be ending, her life could be ending, and still she would be smiling and dancing like there wasn't a care in the world.
Life is a series of moments.
She lived for those moments.
For smiling.
For loving.
For singing and dancing.
For making people happy.
For making you happy.

She's broken now.
Too tired to dance.
The only time she signs is when the songs express how much she is hurting.
She doesn't smile much anymore, smiles mean she is happy.
She isn't.
Oh it may seem like it, shes good at pretending.
She get up and puts on her happy face for the world.
Wears heels to make herself feel taller, when really she feels so small.
She still loves.
Still cares.
Will always make time for you and be here for you.
She just wants someone to take her hand and make everything better.

She's too tired to keep on pretending.
With her fake smile and her happy face.
She wants to sing again and have that twinkle in her eye again.
And right now, she isn't strong enough to make that happen for herself.

Do you remember the girl who used to dance under the stars?

Special

I love driving at night
Well, sitting in the passenger seat while you drive.
When its quiet I look out.
The silence is never uncomfortable.

There's so much you don't see if you're not out driving down country lanes at 3am, 4am, 5am.
The moon is so beautiful when you get away from the town.
The early sunrise makes it glow even brighter, like its clinging on, fighting to stay and be seen.
Those who don't see this are missing out. It's breathtaking.
Even better to share with someone special.

You know someones special when all the time you share is filled with smiles, laughter and love.
Never a word in anger or a negative way.

Heading back to town, getting closer to home, reality crashes down around me.
I feel like that moon.
Its only a few hours until I should be up.
But I don't want to lie down.
I'm in bed alone.

I know the sun will be dazzling my eyes soon.
I'll think back to us driving. It will make me smile a little.

I stretch and hide my face in the pillow. I don't recall falling asleep.
I don't want to turn or look.
I want to pretend my dreams were real and you're mine a little longer.

I want to be yours, not a secret or something you're ashamed of.
We both know thats not true, but its how I feel.
We want the same things.
We make each other so happy don't we?

So I wake alone again.
I scrunch my eyes and check its real.
It is.
For now.
I hope its not this this for much longer.

Scribbles and things

I've been doing lots of writing lately.
I forgot how much I enjoy it.
How therapeutic it is to get things out and off your chest.


It's not just physical pain we have to live with.


So lots of my writings, old and new are going up. I think I write better when I am emotional. I may ramble and waffle and not make sense, but it helps me. Those in my thoughts when I am writing may never see my posts, but I'm not doing it for someone else and I am not doing it because I want attention or sympathy.

I do it because it helps me.
Rather selfish...

Writings

Good things come to those who wait...

Or those who are willing to get up and do something about it.

Good things happen to good people.

People who deserve it.

Good people don't want to hurt others. 

They only want to make others happy.

The happiest they can be.

Unconditionally.

I am a good person, a good person who is torn.

I deserve happiness too.

I can't wait forever.

Try before you quit

When life goes well, people get to know who you are

When things go shit, you get to know who your friends are

So many people are great to be around. Especially when everything is going smoothly

Take note of those who stick around when times are hard

The true friends are those who sacrifice their time to help make your life a little better

They never expect anything in return

Listen before you talk

Think before you react

Wait before you criticize

Forgive before you pray

Try before you quit

Room going...

It's difficult for me. Difficult in many ways, but mostly for me to make room in my life for people, never mind those who don't make room for me.

I'm tired of keeping this room open for you, just in case you decide to come and visit. You never visit these days.

I've kept this room open for others before too, you'd think I'd learn. Apparently not. I never will.

The only time I see you lately is when I push and gnaw and tap on your door obnoxiously.
Even then, you don't always answer.

I'm tired of knocking and waiting for you to answer.

Its about time I opened up this room to someone who might actually use it... someone who might actually consider me and my feelings and my friendship, someone who will see me and like me and appreciate me and encourage me.

The real me that is.

I just want someone who acts like a real friend. Who treasures my time and love and care.

This room should have no space for you anymore. I'm not going to hold it for you forever, its time to let someone else make use of it.

You know what, even if someone does, I'll always make room for you if you ever decide to visit...

Take the good with the bad.

A little catch up post is in order. Its been a while, mostly I haven't had energy to write. I find myself making excuses for myself 'I need to work' or 'Im just busy'
I wish people would get it when I feel like 'I just can't today'

Usually on a Tuesday I am down at karaoke singing my heart out, but after today I am too tired.
I got out of bed at 12.30 today. Not that bad really, all in. I had over ten hours sleep.
Yesterday I did the same and had a 3 hour nap in the early evening too.

Today Im rather pleased with myself. I moved and tidied my room and cleaned all the floors downstairs as well as the bathroom. I made dinner for myself and even have a bit of energy for writing. I've nothing to report from the Doctors visit apart from nothing showed on the xray. Painkillers are doing their job, but the exhaustion is catching up. Not used my walking stick for over a week now. So thats prettygood really. Im chuffed, had a few great afternoons out with friends... End of the month so always a busy time.

I saw a few posts online today that made me smile and inspired me to blog. Here they are;

They made me smile.

That'll do for tonight. :) 

Living each day is like a trip to a theme park

WOW how exciting right? Every day like going on a trip to a theme park... Can't be bad can it?!

This is a little post I am writing to try and explain daily life for me. After feeling pretty hurt at being let down today, I don't think some people realise how important things are to me, even if its something insignificant to them. It takes a lot for me to do stuff, I wish more people understood and didn't take my precious time for granted.

So one morning you arrive at the theme park and get a certain amount of tickets for a go on the rides, lets be generous, you can have 20 tickets. WOW WOW WOW 20 tickets!!
Calm down...

These tickets are my ability to do things.

OK. So I wake up in the morning in bed, usually a little stiff. I have a lovely bed which is perfect for me, so this isn't always too bad when I am at home. If I stay somewhere else, its not as good. I tend not to do as many trips, tours, holidays and so on for this reason. I do my morning email check from my iPhone in bed and my house mate brings me a cup of tea and we have a cigarette together. This saves me a ticket to use later as going up and down two flights of stairs is agony first thing sometimes.

I get out of bed and think what I am going to wear today. There's so much to consider.
Do I have to go out?
How far will I be going?
Is there much walking?
Hows my skin today?
Do I have energy to wash my hair or should I wear a hat or just put it up (which takes a ticket in itself)?

Everything I wear depends on my mood, the jobs I have to do, how my skin is today, if I have to go out, if I have a session on or a shoot. Now most people don't think twice about this and throw something on. Thinking this out makes my brain hurt, especially on a bad 'fog' day. Its hard to remember what I have on. I help myself here with a to do list on my phone, a scheduler and my diary. These are all checked in bed when I do my emails, when I remember.

So getting out of bed takes 1 ticket. I'm not dressed...

19 left and I'm going to use another to get dressed and do my hair and make up. Its a good day so only takes one today. This is an achievement!

18 left...

I sit and turn the computer and turn my work phones on. I cant be disturbed when sleeping or I have less tickets that day.

I'll spend an hour at the PC and do any updates I need to do.

Theres another ticket used up.

17 left and its only 10am, assuming I slept well yesterday, sometimes its 1.30 when I can get up, if at all.

I'll go down to the kitchen and make a snack and a drink, then eat/drink that.

There's another ticket gone.

Now to see if anything has arrived for me in the post and have a chat with my house mates about plans for the day. We try to plan for dinner that evening, but I never know how I will feel and if I will have the energy to cook, let alone eat. Am I going to be able to stomach that, will I just want a tin of soup?? Who knows that before lunch time???

There goes another ticket.

I usually cant stomach much to eat early in the day and will skip a meal if I feel sick as it makes me worse and wastes 2 more tickets.

Back upstairs for more editing of videos, promotion, social networking until 12 ish. Another ticket.

Then I'll usually have a session. Ticket number 14 and its hardly gone lunch time.

One of my house mates will make us something to eat and I have nothing to do but sit and eat. So we'll not take a ticket for this as it is a good day after all. YES! Eating is another achievement. If its a good day it can add a ticket to my day.

13 tickets left and an hours session/work takes one ticket.
On a good day I will have 4 or 5 sessions, on a quiet day I have none and edit.
Doing filming and shoots (which I can edit) also take about a ticket an hour.
Either way I try to aim for 4 hours work, even though I know I need to do more work. Editing, sessions, shoots, any of them are a ticket per hour.

So today lets say I have another session. Bye bye ticket 13...
2 hours editing upstairs and a coffee and snack break will total 3 more tickets.

Its 6pm. Time to do something that will take a ticket but give me a good start tomorrow and reduce the risk of me losing more tickets. I will do some yoga, meditate or listen to a hypnosis CD. I like to mix it a little depending on my mood. If I'm stiff I do yoga, if I'm stressed I meditate, if I am feeling negative the hypnotherapy CD goes on.

6.30 time to cook tea and eat it. Plus clearing up after. Its a good day and everyone helps so its only 2 tickets for that. We have only 6 tickets left. Thankfully I didn't need to go to the supermarket today!

Its 8pm already. What should I do with the rest of my tickets??

Think ahead:
Do I have an early job? More work on?
I know I need to shoot more stuff to edit at some point...
Do I want a shower, do I have the energy?
Do I want to go out and socialize with my friends?

A night at karaoke is 5 tickets. Getting into bed is 1 ticket in itself. Sex is 2 or more (I tend to use any I have left if I am in the right mood and not too much pain) some days I cant bear a hug, let alone anything else. Its not that I push people away, I genuinely cant handle it some days.

Oooh how about a DVD or a board game? Is only one ticket on a good day and of course I can be with people.
Should I add to my blog, that'll cost a ticket.
I could update a site for another ticket.
Read a bit for another.
A shower or bath is 2 tickets. If someone runs the bath its not as bad.

An argument in the day costs me a ticket or two. Stress really doesnt help.
A trip to the coffee shop takes two tickets, even though its really close. I have to put my coat on, pack my bag, I'll go to the bathroom, up and down stairs. So to then go and sit for half an hour and be stood up by a 'friend' totally ruins my day.
If I get upset or dwell on something thats at least another ticket.
Travelling in cars or on trains takes tickets away.
Going to the doctors or specialist takes about 4 tickets with the trip, prodding, talking and everything else - I hate and love doctors...

What else would you do in a normal day??
Play the computer?
Get changed to go out?
Dance while you're out?
Get a bit tipsy?
Spend time with your family?
Put the washing on in the machine?
Go to the shop for milk?
Do the weekly food shop?
Walk the dog?
Do a hobby?
Take a class?
Go out for lunch??

Spend time with your loved ones?????

I wish I had more tickets! And you thought 20 was loads didn't you...

If its a bad day, I start with less tickets.
I need my sleep but have insomnia, which doesnt help, but I deal with it. Being too cold drops my tickets, as does being hot. If I'm nauseous and cant eat they go down, if I'm tired they go down. If my pains high that day they drop more.



Its not that I am avoiding anyone.
I don't like to change my plans last minute.
I dont mean to waste peoples time.

I try and use my tickets wisely because I worry one day I'll have 5 on a good day...

A note to explain my fibromyalgia to the Healthy World from the Land of Chronic Pain and Fatigue

Last year I was diagnosed with Fibromyalgia (fib) - I am writing this to explain to family, friends and acquaintances what it is I am dealing with. I hope you take the time to read it.

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months of mysterious physical and emotional problems.
Because you didn't know how sick I was, and how sick I am you may have called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

4. There isn't a fix it cure, I just have to deal with the symptoms and try to live my life! 

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. I wish I could just 'suck it up' sometimes. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping yesterday, but I can't help you with decorating today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all. It is not intentional. 

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time. This last moth I take it with a walking stick on bad days! I'm only 27...

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it some days.

6. My intolerance - I can't stand heat, either. Or humidity. I perspire more than normal on bad days, it can be embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. I do not want nor need your pity. It doesnt help me at all. I do not want to hear how sorry you are that I have to deal with this day in and day out. All I ask is that you do your own research, and try to understand it. Sometimes bad days are just too much, and there isn't always room to continue to pretend that everything is sunshine and rainbows. I get grumpy and angry, and I'm not trying to take it out on you, but pain can do horrible things not only to body, but my brain as well. Just know that I love you, you are important to me, but right now, my pain takes precedence over everything and everyone else in my life. I've already lost people over my illness, I'm not meaning to be a bit of a bitch, I'm really not.

8. My stress - My body does not handle stress well. If I have to semi retire, work part time, and handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - This goes up and down drastically. I don't want to hear that I look skinny or fat this week. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. I love my body no matter what, even though its so broken! 

10. My need for therapy - If I get a massage regularly, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it has to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily. I need more massages! 

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are pretty much the only thing that keeps me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means they may not have all of the problems mentioned above. These are far from all the problems I deal with. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I know you can't 'see' my illness, but it is real. I hope that this helps you understand me and makes you think when you lol at my walking stick or early nights or get mad because I have to change plans (if I remember them that is) If you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia. 

Hooray for the good days :) 

Thank you for reading this!