New Year dread...

As the New Year approaches the more dread I feel.

I just want it ALL to end!!
I want it ALL to go away!!

I want to find a bridge, a tall building, a parking garage...
I want to find a big concrete wall or bridge brace...
I could round up all my medicines...
I just want to make the pain go away!!

I want to disappear...
Does anyone really care?? Why would they... I don't care...
Does it matter? Doesn't matter to me... nothing does.
Do I matter? I couldn't care less...

I have no reason to keep on keeping on... I have no hope... it has faded away.

I'm not going anywhere. :o(
I don't even have the energy or will to do these things!

Clearer description of RSD & me.

I've been sitting here thinking... I want to be more precise about my pain so that anyone reading could get a more clear picture of the pain that RSD causes... so here it goes...

This is MY PAIN (24/7, 365 days/year):

PAIN LEVEL on a scale of 1 to 10 (1 best, 10 worst):
My pain is a 10+ with often having to redefine what a 10 is as the pain continues to worsen daily.

Starting from top to bottom... then overall...

My head:

• My scalp feels as though the skin (skin all over body feels) has been set on fire!!! Ever get to close to open flames for a little too long?? That searing intense burn?!?! That's how my scalp feels when touched by anything, even by a breeze!!
• An itch on my scalp... to scratch leaves my head feeling RAW, BURNING, as though my fingers have scraped away all of my skin exposing nerves to the air.
• The movement of my hair feels as though each hair is being ripped out of my head!!
• Brushing my hair--not something I can have done more than once a day...feels as though the brush is a sharpened rake and it has dug into skin, scratching deep and is peeling away my skin. Making it feel raw!
• I have a sharp aching feeling in my head right now... I often feel this, It feels as though I have an ice pick being shoved from the top of my head down. It feels as though the pick is being twisted and turned, it feels as though the pick is being being moved around pointing in many different directions.

My face (forehead to chin):

• Mouth: Feels like I am drinking and/or eating razors, sharp needles, pieces of sharp glass. Feels as though the food is a HOT saw, shredding my tongue, cheeks, roof of mouth, and lips.
• My breath: Burns my lips as though the skin has been peeled off leaving them raw. The inside of my nose feels raw when breathing.
• Eyes: Feel as though they are burning--worse than a day at the pool chlorine burn, more intense than soap or shampoo in your eyes. I also feel often like something is stabbing my eye from behind..it's a sharp, long, nail like stabbing feeling.

My hands and arms: Each touch I touch sends Zillions of razor sharp pains through my fingers and hands.. I've lost much strength! I drop things easily...not even realizing I have dropped them...my hands just give and whatever I am holding falls to the floor. I have broken too many glasses to count. I used to cook but the pans are now too heavy and too hot...any heat feels like I'm on fire... I have dropped pans on my feet, on other's feet, spilling contents on everything, injuring and burning myself and others. I'm no longer allowed to cook. I'm no longer allowed to hold little babies without being seated...my hands and arms give out... I can now only lift a few pounds and carry even less.

My Feet and Legs: Walking is becoming more and more difficult!! I can only walk short distances without having to stop and rest or sit down...the pain increases with every step! Each step is becoming more and more PAINFUL with each passing day! My feet feel like the bones are going to shatter with each step!! I feel stabbing pains in my feet and legs...Like I am walking on sharp pieces of broken glass, jagged rocks, hot coals, and molten lava. The pains shoot like electric shocks from my toes through my legs and hips... I also have extreme pain in my hips, legs, knees, ankles, feet, and toes if I have to sit more than 10 to 15 minutes. The muscles and joints seem to want to lock in place and resist with much might when I have to move...feels as though I am tearing my muscles, tendons, and ligaments apart and as if the bones and joints might rip apart and break! My muscles cramp twisting my toes, feet, ankles and legs into weird positions!! I have to walk with small, precise steps...my balance is not longer very good... I fall daily, numerous times weekly, sometimes numerous times daily!!!

I've tried walking with a cane, only to have my legs, hands, or arms give out while trying to support myself and I fall to the ground. I've tried a wheelchair but my hands and arms are no longer strong enough to move myself along for more than a few moments, a few feet. Many days the pain is too much making it impossible to wheel myself at all.

FULL BODY:

1. Muscles: Twitch, Spasm, and Cramp!!!! The muscles feel as though they are being ripped apart. Like something, maybe a dull chainsaw, has grabbed a hold of my muscles twisting, turning, pulling them apart, shredding them into small pieces. It also feels as though something hot or ice cold is jabbing and zapping them with high voltage electrical shocks. These twitches, spasms, cramps, zaps leave me paralyzed with fear for quite a long time after... I fear that if I move these will happen again and will hurt worse. This is what happens...I move the pain increases!!
2. Bones: Feel like they are breaking, like they have been smashed, like they are twisting. The pressure is so very intense it feels like my bones are going to shatter at any second or with the next movement or the next touch.
3. Skin: Turns colors from purple to gray and often mottled. It feels raw, burning as though I have a BAD sunburn--one that blisters and peels deep layers of skin away...and there is nothing you do can ease the pain, not ice, not aloe, not cool water, not ointments of any kind! Any touch from breeze, breath, clothes, bedding, family, friend, young child, shower drops, rain drops all cause so much pain...even the lightest of touches feels like sliding across gravel, glass, hot coals with exposed raw nerves.
4. Joints: Often LOCK and have to be forcefully moved.... sometimes this is not possible. No matter what I do, I just can't get them to move when they refuse to move. Often when I do get them to move, there is a LOUD POP and increased pain. Also, most of the time my joints feel like they are ripping apart--like tearing into meat with a fork.

My body often feels as though it is burning very COLD or very HOT to the touch... other times I feel hot or cold and when I touch the area it is not how it feels on the inside.

Cold and Hot temperatures are very painful.... HOT BURNING, Like hot melted cheese being poured on my skin. I've experienced burn like marks on my legs when they were only exposed to heat... nothing touched them to burn them. COLD BURNING as though I've been left on an iceberg in the sun with no protection from the elements.

A shower feels like I am being pelted and impaled with Zillions of HOT, SHARP NAILS...even when the water is not so hot or so cold. I need help getting into and out of the shower/bath. I need help bathing and washing my hair... I have extreme difficulty and pain trying to move to wash myself and my hair.

Shaving...feels like running a lawnmower over my skin... If I don't shave, I can feel every hair rubbing against my clothes... this feels like the hairs are being ripped from my skin. (I never had much hair on my arms before RSD, now I have loads of hair on them! Anything that touches my arms feels as though the hairs are being ripped out one by one!)

OVERALL: I can't walk, sit, stand, or lay in any one position for very long...Pain increases to the point of having sit when walking or standing, to have to lay down when sitting, standing, or walking, having to change positions frequently when laying. Every position causes pain to intensify... Pain continues to worsen daily, though I don't know how or why...I didn't even know it was possible for pain to continue to increase in intensity. I PASS OUT NUMEROUS TIMES (5-6) Weekly due to pain.

Sleeping: I have extreme difficulty sleeping, only sleeping a couple hours a night most often only 20 to 30 minutes at a time. I often DO NOT sleep at all...recently slept 6 hours in 10 days then slept a couple of hours... and up for 3 days...then back to the 20 to 30 minutes for a couple hours total a night.

Shoes and clothes: I wear slip on shoes as I have extreme difficulty, almost impossible, in tying shoes. Even the lightest weight shoe causes severe pain in my feet. I wear clothes that are easy to get on and off... though I do have to ask for help with buttons, zippers, and socks. I wear the same kind of clothes as I did when I was first diagnosed with RSD--my physical therapist at that time told me to do this so my body would get used to the fabric as much as it could...IT IS STILL VERY PAINFUL WHEN THE MATERIAL TOUCHES MY SKIN.

Medicines: I have been on numerous medicines... I take them as prescribed. Some of the medicines I have been on for a long time... I don't know if they are working or not... I've never been off of them and have been at the same dosage levels for a long time. I can NOT take narcotic pain medicines as I have had severe allergic reaction to each one tried...anaphylactic shock is a terrible and scary thing. I've been on steroids with no relief. I've been on anti-inflammatory meds with no relief. I take anti-seizure medicine that helps, a little--I think, with the nerve burning pain...This is one of the meds that I have been on for a long time. I take medicine for the muscles cramping/twitches/spasms... I do know that this one does work as I take it 4 times a day and get relief shortly after taking...unfortunately the relief is not long lived.

I also take medicines for mental health---Depression, Bipolar, Anxiety, Social Phobia, PTSD, and CONSTANT Suicidal thoughts. I do know when these medicines are working and when they are not. Will talk more about my mental/emotional health in another post soon, though it is probably easily seen in previous posts that mentally, emotionally... I WANT this ALL TO END!!

Today's physical pain

An ice pick being shoved from the top of my head to the tip of my toes....
Forceful and strong... ice cold and intensely painful!!

My eyes burn and water as if I've been soaking them in chlorine water...only more painful than a day at the pool. I am also having an intense deep pain around my eyes... I can't really describe it other than very painful!

My nose and lips are burning and are painful to touch! My cheeks, chin, forehead, ears, scalp, neck, and torso are also burning and screaming out in pain!

The inside of my mouth feels raw and is burning!!!

My shoulder, arms, and hands are in so much pain that each little touch is truly indescribable... feels as though my hands have been SMASHED. They are more swollen today...it hurts so much just to move them even the slightest bit. They are burning, feel raw, and the muscles are cramping tight. They are purple and mottled.

I have muscles twitching, spasming, cramping all over my body. Muscles feel as though they are about to rip away from my bones. Feels as though they are tearing into pieces.

My hips are screaming out a torturous pain today... my thighs, knees, calves, feet, and toes are following suit.

Can bones explode? I don't know. I DO KNOW that my bones HURT!! A DEEP, CRUSHING PAIN!!! Each step that I take, each movement I make...I wonder when the bones are going to break?!?!?!

A few days since last post

Empty... that's how I feel right now... I know.. it's no difference than any other day.... just feels more so today.

I didn't enjoy the Holiday at all... I stayed in my room, in the dark, television was on but I have no clue what shows were playing.

I haven't left my room much at all lately... to go to the bathroom or MAYBE grab a bite to eat... I MAY be out of my room for a total of 30 to 45 minutes a day total.

I am hurting so much!!! I feel the pain more and more intense each day!!! I don't know how this happens or even know that it was possible....but it's real and it's PAINFUL!

My body feels as though it might explode at any moment.... I feel so much pressure in my muscles and in my bones!! I HURT SO MUCH!!!!!! My skin feels like a severe burn and touch is EXCRUCIATING!!!!

Parts of my body feel ice cold while other parts feel like they are on fire!!!!

I am still not sleeping much and getting no rest at all!!! The sleep I do get just doesn't restore... I wake up in a PANIC!!!

I just wish that it would ALL END!!! One more breath feels like one to many to me.... Yes, BREATHING HURTS too....it feels like FIRE on the inside and on my skin as I exhale.

If I fall asleep and don't wake... it's okay!

My today...

A cluttered mind, lost and confused. I don't know which way to turn.

I should be happy this time of year, that's what people say.... I'm not.

I shouldn't be in pain, but I AM...

The top of my head feels like it's sunburned it's hurting so much...

My neck is so sore... it hurts to move and touch also brings on an intense sunburn feel.

My shoulders, arms and hands are having muscle spasms today... no different than any other day just more frequent and a little more intense.

My torso hasn't let up... it's still burning!

I have the cold burning pain more inside my stomach today than yesterday.... It's been there for a long time...but is becoming more and more painful.

From the top to the bottom.... I can feel a burning through my spine.

My hips, glutes, thighs, calfs, feet and toes... Fire, Cold, Burning, cramping, spasms.

My bones feel like they are going to explode... I've never felt such INTENSE pain!!!

A headache that just won't go, my face it twitches, burns, and aches. The inside of my mouth..so painful!! Even cool water feels like razors cutting. Food is often torture.

Tears falling down my face may as well be acid... as they burn my eyes and face when they fall.

That's what's going on in my own little, physical pain hell.

The mental hell all of this is causing is growing worse each moment.... If it wouldn't cause my family any grief... I'd be okay if today was my last day.

Sigh... one more day.

Didn't write anything yesterday... there was nothing new to say...

Only thing different today was that it snowed, melted, and snowed again...

My body is in full major protest of this weather! I swear by body senses any change in the temperature and the air pressure and pain levels adjust accordingly...the majority of the time it seems my pain increases... I never notice it decrease though.

I still have a headache... not as strong feeling today... hopefully this means that it's going to give up and go away...

My stomach and upper back are on FIRE!!! What is weird though.. they are ICE cold to the touch!!!

I hope I get some sleep soon... I feel it's going to be a long week if I don't.

Time to get off here...my muscles are in a full raging fit!!!! I HATE muscle cramps!!!

Feeling..

I feel like I'm falling apart...

I feel like I'm losing it...

I feel like I'm about to spin out of control...

I feel the darkness surrounding...

I feel PAIN...

I feel sick...

I feel dizzy...

I feel empty...

I feel lost...

I feel...

Day's not done yet...

It's already been a long day and it's not even close to being over...

Still haven't slept yet... 48+ hours... not even tired... brain still bouncing all around---this is tiring.

Call from doctor's office... blood work is back... have to go in tomorrow morning (was supposed to be Monday but my anxiety spiked and I had to call back and ask for an appointment tomorrow) because the numbers are concerning... they just wouldn't tell me over the phone...

I'm sure this means that they want more tests or something...

I am more than freaked out about this...but trying not to let my brain blow it out of proportion... I am making myself sick... can't help it... it's just happening.

Folks are going out of town this weekend so I will be home alone trying to figure out what all of this means.... I am going to try, if I can remember, to take a notebook with me so I can write down what the doc tells me....

My pain today is escalating.. new high again... skin feels like it's going to split... OUCH!!!

My head feels like it is going to explode.... I feel like an ice pick is being shoved through my eye... My stomach is all in knots.... The cold fiery hell is on a rampage right now...

I lay curled up trying to get the pain to ease....

Another day down...

Another day down...

BAD DAY... one of the worst ones yet... for many reasons that I can't quite express...many words elude me... they are caught up in the jumbled mess in my mind.

Physically... My pain level is 100+
Haven't slept since waking up on Tuesday...
Doc gave me a shot to help with my pain... it helped I think..but the pain came back MEGA BIG time. The injection site feels as though I was kicked by a mule or hit by a mack truck... and this pain is only minor in comparison to my whole body!!!

The cold temperatures are searingly painful even goosebumps are painful!!

Mentally/Emotionally... putting these two together today as I can't separate the pain they are both experiencing... Made a BIG mistake today by letting someone who I believed should know how I am doing...know what I am going through... how I am truly feeling. Come to find out... They didn't want to know... in their words---I'm not equipped to help you. I didn't tell them to get help from them...just wanted them to know...believed they would want to know... again...they didn't.

All of this is bouncing through my head like a freight train out of control... high speed, down hill, and the brakes are out.

Thoughts of how to end the pain... thoughts of wondering if I can keep treading water...thoughts of what's next...thoughts of not wanting to hurt others...thoughts of not wanting to be locked away (major fear for me)...trying to get my ducks in a row when they are scattered to the four-winds blown...

I know my limitations...try to push through them at times when I feel just a little stronger only to be pushed back...I'm not as strong as I once was... One step forward, Ten steps back, usually rolling downhill fast.

What to expect next... my mind only continues to speed out of control... at least I recognize this...well only because it was bluntly pointed out to me... lesson learned... trying not to repeat again mistakes of the past...

Dreams have become NIGHTMARES.... Nightmares are MY reality.

Another day..

Made it through another day.... at least it looks that way... still treading with my head above the water.

Only plan for now is... hot cocoa with many mini marshmallows...

Television is on... kind of watching but mostly listening to the new singing show... no idea what the show name is...

Time to just veg... well, try that is.... that's all that I can do...try.

Made it through

Made it through appointments today....
it was very difficult for me!!!

Tdoc is worried... and has reason to be I guess...
I don't want to live like this... I'm so tired of the pain.

If I can't pull myself out of the darkness and despair in the next couple of weeks, she would have to put me some place where I can not harm myself.

I have already made a commitment to take care of nephews and nieces next week... (edit---other arrangements were made...no watching kids for me.)

Then comes Christmas.... Not really looking forward to this...

We'll see how it goes when I go back in a couple of weeks...

I don't see how things might change as my pain isn't going to just go away!!!

Monday...

Well... I woke up again... none to happy about this!!

My head is spinning.... I even blacked out/passed out once again.... fell on my face into a chair or maybe it was the couch.

I have to find my way to the Tdoc/Pdoc today.... I know it's not going to be an easy trip as I am having a very hard time just holding my eyes open....Not sure what they are going to be able to do... they aren't going to change my mind about wanting to vanish from the face of the universe.

Will write more "IF" I make it through this visit.

Sigh... I'm tired/Exhausted and want to fall asleep forever.

Again...

I woke up again today.... :o( I truly prayed to never wake up again! Tears have been falling all day.... I can't even die as much as I want too.... If living in constant severe physical and mental pain is living.... I WANT TO DIE!!!

I stayed in my pajamas.... until my mom basically threw me into the bath tub. I guess I must have stunk...

I sat there in the tub awhile wondering if I should use the razor or maybe just dunk my head under and never come back up.

I finally got out of the tub and put my pajamas back on.... My mom threw my laundry in the wash.... one load is done and another is in the dryer.

I've been thinking a lot lately.... there has to be about a dozen parking garages around here... I could park on an upper level close to the edge... it would only be a few steps to make it to the edge. I've been thinking of climbing over the wall and just jumping or letting go and falling.

I've also thought about the many bridges around.... I know of one that is way out in the country and the road is not too traveled. I could jump into the river, it's a pretty decent fall...and with the water so cold.... I'd be gone before anyone would notice.

I also know about the many bridges that cross over the interstate....the concrete in many places is not blocked by the water barrell barricades.... I'm guessing if I hit one head on about 80 or 90 miles and hour there would be just parts and pieces left.

If you are reading this and it is upsetting to you... please forgive me as I just can't live in this pain. I am a burden on my family and society.... I worked hard for many years and now Social Security say's NO, No way are you entitled to the disability benifits that you worked your whole life for....

If I make it to tomorrow... I will write what it is like to live a day in the life of someone suffering from RSD and Bipolar.... Also Major Depression, Anxiety, PTSD, and Social Phobia.

I'm not telling anyone that their life is not worth living.... I'm just saying that mine is not.

Woke up...

Woke up this morning and began crying....

I truly wished that I would take my last breath while I was sleeping.

It took me several hours to move around, get out of bed, and put on acceptable clothes. My pain levels are touching the sky....10 doesn't even begin to touch the pain I feel tonight.

I managed to put some food into my body only because both of my parents kept insisting.

I went back to my room, fell back asleep.... woke up again around 5pm.... ate a hamburger because my mom had fixed it and my dad insisted I eat.

I then went back to my room and fell asleep until about 9pm...

I'm awake now only because I am trying to fight off the sandman.... but I'm going to give in soon.

I'm so tired.... need to take my meds.... hopefully will fall asleep again soon.

My wish is still to take my last breath while I sleep....

Hospital...

I was asked that why...if I am in so much pain (mentally and physically)...don't I go to the hospital??

The answer is simple and complicated....
No insurance... no cash to pay for it myself... don't need the added stress of this..

What are they going to do??
Give me pain medicine? I think not!! Not when I am severely allergic to pain medicines!!

What else can they do for severe pain??? Nothing that I am aware of....

Give me medicine for my depression? I'm already on it.

Give me medicine for my manic thoughts? On it too!

Give me medicine for my anxiety?? Take that too!!

Make me talk to someone....uhm... NO! I can't just talk to anyone...that's a HUGE fear of mine.

So...basically...they are going to lock me in a room alone and won't be able to do anything for me.

I can stay at home...where people are in and out...I can take my meds as prescribed...I can make a phone call and be put in contact with someone I trust.

What would you do? Go to someplace and have to explain yourself and situation to someone who may or may not choose to believe you... OR stay at home and do what you can do until you can get into the doctor's office?? I choose the second.... I believe I will recognize an emergency situation and will go to the nearest hospital if that happens.

My choice is not what "professionals" want to hear... many think that just because I don't go to the hospital that I am not in the amount of severe pain that I feel. I was raised to not run to the hospital unless I am severely bleeding, impaled, or a bone is sticking out of my skin. I have learned to "deal" with pain out of necessity...unless one of the above was happening, I didn't even tell my parents...that was how I was raised.

How?

How do you keep going when the wind has been knocked out of your sail?

How do you keep going when you keep getting knocked to the ground?

How do you find the will to keep living?

How do you win the war when you lose all of the battles?

Why would anyone want to live this way?

I'm okay with it if today is my last breath! I know where the pills are that could permanently take away this pain. I have enough patches that would do the same. I know where the razor's and knifes are... I could also tie a rope and hang. Thoughts of suicide are my constant companion!! I do know how and the plans are in my head.

What keeps me here when deep down my will to keep on going is gone? I don't want anyone to hurt because of me. That is the only reason!! I've already hurt too many, too much.

My physical pain rates about a 10 this is a constant pain. I have a severe burning sensation just from my clothes touching my skin.... Muscles cramping, bones hurt so bad they feel as though they could explode at any moment. It's hard to type this as a zillion nails and needles are jamming through my fingers.

I spend 99.9% of my life in bed. I don't go anywhere. I don't do anything. The pain is just too much.

I eat if something is easy like a cold sandwich or lunchable or if it is prepared for me. I don't cook as I can't handle the heat. I've burnt myself too many times....I am not allowed to cook as I forget that the stove or oven is on...family is afraid I will burn down the house.

I don't use glassware of any kind....I've broken too many glasses and dishes to count. My hands shake and give out for reason's not clear to me. This is why I am not allowed to wash any dishes or load the dishwasher...one to many breaks and one to many cuts.

Laundry is a task that takes hours to even days.... that is... if I can find any energy to get it done. I have piles that sit here...yes dirty but I don't care.

I can't vacuum as the vacuum is too heavy for me to move...also the vibrations increase my pain levels immensely!! It even hurts my body when someone else is running the vacuum...vibrations come through the floor and furniture... pain increases.

I'm not allowed to clean the windows as my balance is terrible and I'm shakey a lot of the time....family and friends are afraid I will fall through a window.

My legs give out too... I walk slow and deliberate holding on to walls. I'm tired of smacking my head, arms, shoulders, and other parts of my body into the walls and floor.

If I'm outside, walking into a store.... I walk slow trying to steady myself and then find the nearest power cart. This helps a little but the vibrations from the motor intensify my pain. I had a doctor ask me about a cane...I have tried but when my arms give out while using one....I fall to the floor once more.

If I have to go to the doctor or maybe to the store... I pay in increased pain for several days after.... imagine...the vibrations from your car's tires making you feel as though nails and needles are being shoved from your toes to the tip of your head. That's how I feel when I am driving or riding in a car...this is how I feel always...just varying degrees of pain at different times...

I have the burning, bone crushing, muscle cramping & spasms, needles and nails feeling 24/7 there are many things that magnify them... my own breath on my skin, a breeze blowing outside, this is even painful when it comes from the furnace or a fan, a gentle touch from family and friends. If I know someone is about to touch me I can prepare myself so that I don't jump out of my skin. It doesn't lessen the pain it actually increases it but I am prepared... as best as I can be that is.

I know that cold air hurts many... but to me it's torture, like a cold burning flame. Hot air is just the same... increased pain!!! I am most comfortable between 72 and 74 degrees. My skin turns various shades of pink, red, and purple. My legs have even looked like I had 2nd and 3rd degree burns from just the heat...no sunlight ever touched them.

I have trouble just taking care of myself... it's hard to admit and embarassing to say... bathing hurts, truly excruciating pain. So...I just don't. On the occassion that I do...I have to make sure someone is here to help me in and out of the tub.
I often do not get out of bed as I really see no need.... you see, getting out of bed means increased pain physically... and mentally I'm just burnt out, the life I once had is gone and I don't see any hope for tomorrow. This was not something I accepted lightly... but my reality is all to clear and reluctantly I am forced to accept the things that I can no longer or am no longer allowed to do.

Say what?

The full moon is moving across the cold night air. Winter must be on it's way in.... Not a tweet from a bird nor a chirp from a bug can be heard. Only the whistle of a distant train.

I often wonder where the train is headed and what sights it is about to see....

I long to be sitting on a beach watching the waves roll in and out or Maybe on a hill top looking at the city lights or spending time with someone who cares.

The train rumbles on by to locations unknown.... I sit alone.