Day In The Life...

I live in Florida and we just had a hurricane go through, Irma. Luckily I am in the panhandle so all we got was a tropical storm in our area. Some wind, some rain, and a dent in the van where a branch fell on it from the tree. Weather definitely effects chronic pain conditions and I am no exception to that. For the last couple days I have had lots of muscle spams, sciatica, tingling/numbness, shooting pain, and a higher pain level over all. A bad few days so far.

Since this is Chronic Pain Awareness Month (September) I thought this would be a good day to do one of those "Day in the life..." type posts. I think it will be a good idea to give people information on what it is truly like to have a bad day with a chronic pain condition. This is how it effects me, but I figure it will at least give people a rough idea of how it might be effecting someone in their lives and hopefully it will promote understanding.

So lets start with over night, sleeping. (Sleep? What's that?!? LOL) Due to the increased pain and severe muscle spasms I was not able to try to sleep until 2AM. I had a hard time getting comfortable enough to try and fall asleep because when I shifted position the muscles in my back (just under my shoulder blades all the way down to mid thigh on both legs) tightened up and started to spasm. This causes extremely sharp and intense bolts and waves of pain to shoot through the entire area. When it first starts it is extremely intense and takes my breath away. I then have to mentally remind myself to breathe, slowly and calmly. Somewhere around 3AM or so I dozed off. I woke up a few times due to pain and spasms but managed to go back to sleep until 4:30AM. I've been awake since then (it is now 9AM). I have been alternating between applying heat and ice to the affected areas (alternating; 20 minutes on/20 minutes off/switch to the other/repeat). Neither helps tremendously but when it is like this I'll take what I can get. I am having to shift position every 3 to 5 minutes (instead of my normal 8 to 10 minutes) to try and stave off another episode of spasming. This is not very effective since I still get the spasms and sciatica, it just isn't as intense. I am currently sitting at an 8 on the pain scale of 0 to 10. I took my morning medications at 7AM. Right now I am watching vlogs on youtube.

To get breakfast I had to think of something to eat that would require minimal movement and preparation as standing and walking are very painful for me. With the sciatica going on it is also dangerous as my legs can give out without warning and falling to the floor is not a good thing. I decided to make toast because it required the least amount of standing, bending, and reaching for things.

It is now 11AM and I am still in bed shifting position and alternating heat and ice every 20 minutes. I've also done some very gentle stretching to ease muscle stiffness. I am having to shift between sitting and laying down every 5 to 10 minutes. I can go 10 minutes laying on my right side, but only 5 minutes sitting up. Every 5 minutes sitting up I have to shift around and change which way I am leaning (left, right, forward, back against pillows). My left side is the worst and I can't lay on it at all. This is very annoying shifting around all the time. I'm still at a level 8 on the pain scale but am grateful that it is not getting stronger and am hoping it stays this way (I don't think it will as I have to pick my husband up from work this afternoon). I keep thinking of my mother telling me, as a child, when I was restless "Do you have ants in your pants?" and it makes me giggle.

It is now 6PM. I slept from 11:30AM or so until 2:15PM. Was a restless sleep and I woke up a few times with the muscle spasms. Back to alternating heat and ice. At 4:30 or so I went and picked my husband up from work, which hurt a lot, but it felt nice to get out of the house and into the sunshine. Came home and ate dinner which my daughter had cooked. Now, while alternating heat and ice I am going to do a stitching hangout to chat with friends and stitch for distraction. Sometimes it helps distract from the pain but even if that doesn't happen, it always lifts my mood to be chatting with friends.

It is now 9:47PM and just got off the stitching hangout. Made good progress on my project which can be seen on my stitching blog. I continued to alternate heat and ice during the hangout, shifting positions as needed as well as getting up to walk around and stretch my muscles out. My pain has been pretty steady at an 8 all day, but I am grateful that it didn't go higher or hit a pain crisis (level 10). I really didn't want to be curled up in bed and crying from the pain.

Now I will continue with the heat and ice while I watch some stuff on Youtube or Netflix/Hulu until I am sleepy, then I will try to sleep. I don't know how much sleep I will get but am hoping I get more than a couple hours. Lack of adequate sleep does not do good things for my pain, it also makes it harder to mentally deal with the pain.

That's pretty much my day today. My hope in sharing this is to help people understand what it is like during a bad day. As well as to show that being home a lot due to pain is not the fun, relaxing day off that people think it is.

Discovering What's Missing

While lost in that darkness you lose yourself and your life, which includes everything you normally enjoy. You stop caring about those things, doing them feels empty or like it takes too much effort. Along with losing my desire to stitch I also lost my desire to read.

Now reading has been a constant companion for me, a long with writing. I read books constantly since I first learned how to read. I remember as a child sitting in the back of my closet, yes behind the clothes, with a flashlight and reading. I did this in the middle of the night and hiding in the closet (sometimes) was to keep the light from showing so I wouldn't get caught because I just *HAD* to know how the story ended. Everywhere I went, I brought a book. They were my friends for many years when I didn't have friends.

Yesterday Ron and I went out for dinner, something we haven't done in over a year. After the meal (which was great btw!) we went to the book store. The last time we went I remember just rambling around not finding anything of interest, but last night I was interested. With a bit of help from an employee I found some books I wanted. Stephen King's son (one of them) is a published author as well. He goes by the name Joe Hill and he had 2 books out that I had not seen before, so I bought them. (I already had his other 2) When we got home I peeked at them and chose one to start reading, NOS4A2. It grabbed me within the first couple of pages and I LOVE when a book does that. It grabs you and takes you someplace magical and wonderful.

Feeling that again made me realize how long it had been since I actually read a book. I re-read books and enjoy them every time. At least, I used to. I thought back and it took a while, but I think it has been well over a year since I read a whole book, either a new one or an old and much loved one. This just blew my mind.

Me? Not reading?

Reading had always been my escape, my comfort, and my savior before. Stories helped me deal with so many stressors and depressive episodes before. Why was this time so different? I don't know but it certainly was different.

I read for HOURS last night! I devoured the words as the images filled my head and just enjoyed every bit of it. I finally dozed off over the book and when I woke up after just a few minutes I did what I promised I would ad put the book aside and tried to sleep.

I wasn't kidding when I said I spent most of my time over the past couple of years doing nothing except staring at stuff on the internet (sometimes good stuff, sometimes stupid stuff).

It feels good to be doing the things I enjoy, and enjoying it, again. But I am worried. Will this period of being awake just last a couple weeks, then go away quietly like the last couple I had in the past 3 years? I hope not, I really do.

(BTW there is good news about my chronic pain. Turns out hypothyroidism can cause pain. My thyroid is better balanced thanks to medication and in doing so lots of symptoms cleared up, and the intensity of my pain had dialed down a bit. I am back to being able to stand for 10 or so minutes. Eventually better things will be written about but right now I'm writing out what my brain is focusing on and it seems to be focusing on noticing how badly this depression affected me.)

Thoughts on Depression

Past words echo in my mind..words spoken, heartfelt and believed at the time…yet uneducated, naive words. Life, as always, is a hard teacher sometimes. I remember saying “You’re either suicidal or you’re not. You either want to kill yourself, or you don’t.”…passive suicide was something I couldn't fully understand or believe in, at least not when those words were spoken.

I understood fully sayings such as “I just don’t care anymore”, “life seems empty”. Yes, these made sense because at different times in my life I felt those things.

Depression isn't new to me. I've had my down times, self destructive times, wanting to kill myself times, melancholy, sad, angry and others. I’d had periods where nothing seemed to matter much at all.

But I've learned, yes one can chose to die without actively taking too many pills, using a gun, or any other method of suicide. This manner of suicide is more insidious, sneaky and dark. It comes after “life is empty” and “I don’t care anymore”. It is the miasma that occurs when one lives beyond those stages. Not only does nothing matter anymore, but it matters so little that you can’t even be bothered to use that tiny bit of energy to say it doesn't matter anymore. It isn't worth the effort to say it or write it. After that it isn't even worth the effort to think it. 

That is where I got to spend 2 years.

Yes I had periods where my anger woke me up a bit, but it didn't last long and as time passed, those periods happened less and less often, had a lot less energy behind them, and eventually ceased at all. “It just isn't worth it”.

At this point, death is welcome, even desired. Though you can’t summon the energy to end your own life, you find yourself craving it. Just wanting it to happen, not giving a shit about when or how, just “soon”.

This is a horrible place to be. It is where I spent most of last year, empty, dark, just existing but not really there. 

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

I'm working on getting back on my feet (literally and figuratively). Thanks to a major health scare in late October 2013, the severity of my depression finally became clear because for the first time in a long long time I felt something. When my heart went nuts and I thought I was going to die, my brain started screaming "I don't want to die". Since then, I'm trying to get back some life. The words above were written last night while I was thinking about how the last year truly was. 

Where am I?

This is basically a copy/paste of what I posted on my stitching blog to let stitchy friends know where I've been. However, this post is more "on topic" in this blog. I feel bad (Lazy etc) just copying it here, but I know that some of the readers of this blog do not read my stitching blog (which is perfectly fine). And since this is where I should write about pain and depression..well anywhoo..here it is. I could ramble a whole lot more, but this is long enough as it is. I will try to ramble some more tomorrow.

Well, to let everyone know, I am still alive and around. I know it's been close to (if not already past [too lazy to check right now, ok I checked it was Feb. 2013]) a year 8 months since I posted here, longer than that since I posted with any regularity. I haven't been stitching much at all. I put a few stitches (total of maybe 50 stitches all told) in a couple of my WIP's here and there, but nothing major at all. *Pictures people making a a cross with their hands and yelling at her: "No stitching?!?! Sacrilege! Back you floss deserter, back you project abuser, back I say!" [raven giggles at herself]* See? I have lost my mind I tell you!

Another odd image: 2 rather official looking ladies at my front door dressed in black suits, complete with sunglasses (think Men In Black, only women in the suits rather than men) and ID wallets. Their badges have the symbol for cross-stitch of a hoop with fabric and a needle parked in said fabric. The words surrounding them are "International Needlework Association: Cross-stitch Div.: Project Protection Agent". They hand me a court order allowing them to confiscate my stash, WIPs, UFOs, and even my Ghingers for their own protection from my abusive neglect. "Now Mrs. Shadowborne if you would please surrender your Needlework ID, Scissors License and Precious Metals Needle Approval Cards. Yes than, very well.  Thank you very much and have a lovely day!" (trust me, it seemed much funnier in my head...oh well never said I was good at comedic writing  LOL)

I signed up for an exchange (due back in February) in the hopes it would help me regain my stitching bug. I have stitched on it. It sits three-quarters completed (would still need put together etc) in my stitching bag (along with 5 other WIPs) and I just can't find the energy to finish it. It is so late and I feel so horrible about it. I have told my partner and she is being so wonderful and understanding about it. My brain however uses it to beat me up. Why does depression have to include mental self-flagellation via self-insults and loads and loads and loads of guilt? It doesn't help, just makes it worse.

What happened? Depression is what happened.

The truth is: I just haven't been able to drum up the desire to stitch, or when I had a tiny inkling of desire, I couldn't drum up the energy to actually do it. My depression finally hit the really bad stages where even the sadness and despair go away, leaving nothing behind....emptiness.

Those woods I posted about a while back, I got lost again I stayed lost and couldn't find my way out. I knew my depression was bad, but I didn't realize it could get even worse, but it did.  I'm not sure that I have found a way out yet, but I am at least forcing myself to try to resume activities I know I used to enjoy doing. But it is so hard to fight back when I can't really do anything but sit in bed all the time. The pain has been insane, and pain like that really does mess up the chemical balance of the brain and nervous system.  In some ways the depression and it's accompanying dissociation is comforting because it removes a lot of emotions, thus I don't feel guilt, emotional pain etc. Instead I just feel empty, vast sweeping blackness..nothing at all. I've had a day here and there where I did have some feelings, but not often, not for long, and not real good feelings/thoughts. Though, there is one ray of sunshine finally: those days with some emotion have been increasing in frequency so that's good. I know that in order to feel better, I have to allow myself to feel at all. Of course the first feelings will include all the guilt, anger, frustration, fear etc. that I have been hiding from and the idea of feeling those things in order to move through them is extremely daunting.

I have days where some feelings are coming back, and when they do I am struggling to let them, to not shove them back down. It is terrifying. Part of me truly wants to stay in the woods, the deepest darkest part where there were no real emotions more often than not. My last post, I tried to end on an improved note. I *did* go stitch (about 15 stitches before giving up) that day though.

Thank you to all those who left me such wonderful comments! I read them all, obsessively more than once because they give me a warm & good feeling inside which is better than the empty nothing I had 99% of the time. I fully intended to reply to each one via email and when I realized a few weeks had gone by I just didn't know what to do. Reply so late? Let it go without telling them what their words mean to you? The self talk turned into how horrible I am, useless, etc etc., and I became afraid of the response I'd get if I replied after such a long time. I felt I would deserve it whether it be an angry/upset/disappointed/whatever response to my reply or no response at all. So, as with everything else for the last few years, I did nothing and just used them as more ammunition for those times when my brain played "beat up the birdie girl!". I truly am sorry for not responding to those comments before now and I appreciate them a great deal, thank you thank you thank you!

I am not posting any of this to make people feel bad for me or anything like that. I am posting it (terrified but going to do it anyway even if it means I have to ask DH to click the publish button) for a few different reasons. One to explain where I've been. Two, to release some of my feelings in hopes my doing so may do some good for someone else. There are other reasons as well, but I think I've rambled quite too much about my depression in what is supposed to be my stitching blog. If you've read this far, Thank You and give yourself a pat on the back, Well Done! (and no I do not mean that sarcastically). I appreciate it :)

Depression (Severe) SUCKS!

Ok this is my 9th attempted post that has been sitting in the drafts folder for a while. It has taken me 2 weeks to write this one as it is. "OK .......here goes...click publish Raven! click it!"

New Poems

I'm not sure how good this is, but I got bit by the need to write about 10 minutes ago (it is 9:01 AM, 1/22/13). So I opened a word document and started. After a bit of tweaking this is what came out. I am very pleased because this is how I used to write. Get that feeling of "needing" to write, right now..no waiting. Grab paper and a pen/pencil/whatever and just let the words come. When I had written enough for that feeling to go away I would then look over what I wrote and edit things. Sometimes it was an essay that came out, other times a poem (or multiple poems)..they just tended to pop into my head all ready to go, all I had to do was write them down. I doubt I follow any "rules" of poetry, but that doesn't seem to be the point. The point seems to be to try and put my emotions into prose as accurately as I can. 

I've been struggling for the last 12 years to be able to write the way I used to. It is finally starting to come back. That status I posted the other day about pain taking bites out of those who suffer from it, was written because the need popped up. I've had the need pop up more in the last couple weeks than it had in the last 12 years. Anyway, this isn't perfect but I do like it, so I thought I'd share it. This came about because I have been asked how/why I would willingly allow apathy and depression to take over, why I would give up and just dissociate. This seems to be how my mind wants to answer those questions for right now. Another thought that keeps popping up is that, in part, it is a rest period. A time for me to just stop fighting and allow my batteries to recharge, so to speak. It takes a great deal of energy and effort, conscious effort (both mental and emotional), to push through the pain and try to live some semblance of a life. It takes a lot more effort than many people realize, want to believe, or even consider. Sadly only those who also live with constant pain/illness seem to truly understand it fully. So I'm guessing that this poem/prose/whatever you want to call it, is an attempt to help people understand, or to at least help them try to understand. 

Darkness Brings Relief

Author: M. Hull (Jan. 22, 2013)

Into the darkness my heart has fallen

                Feelings forgotten

                                body ignored

Nothing penetrates the blackness surrounding

                floating lost in the void

Neither emotional nor physical pain can reach

                deep into the darkness

                Inky depths that protect so sweet

Apathy wraps gentle wings about me

     pulling me in with whispers of peaceful serenity

                promises of relief

Snuggling in deeply

                an escape desperately sought

                a coldness quickly wrought

                yet the heart and soul care not

For the darkness  

brings relief to a desperate soul

Immune to the cold which surrounds me

Chilling self and those around me

Creating an icy boundary

few dare to cross

Leaving me to comfortably wallow

                free floating

                at peace

Deep within the darkness

 the darkness which brings relief

Ignorant of the blackness about me

Unaware of life’s buzz without me

Floating in quiet solitude

Dissociated from the world

mind and soul freed from the hell

the hell of my own flesh

With silken cords does the darkness bind me

                a willing captive

                a slave to darkness’s relief

END

Not too bad I don't think. I'm just glad to start having that need to write that has been apart of my life since I was a kid finally coming back. 

P.S.: To remmy and Sterling This one is for you two for helping me find a way to get my writing back. Thank you both so very much for your ideas, they really did make a major difference! and, as always For Ron, my soul mate and biggest supporter. Thank you for everything you've given to and done for me!

Below are a couple other poems/prose that came to me. This one is definitely not done, but when I got that far my mind jumped to a different direction/wording and I moved to that. It seems to have worked much better because that poem is pretty much complete, just needs a final edit, but I'm going to post it anyway.

Through trial and error

And life altering mistakes

I hoped, dreamed and prayed

That some day

Some day

I would find the one whom I sought

The one  completes me

Making me whole

As his love filled my soul

END

The second one, which popped up so fast and urgently that it overrode the

first one completely LOL It's not done, but I'm so sleepy I can't figure out

where it needs changed LOL

With each day I lived through

continuing to breathe

I tempted the fates

To deny what I need

Mistakes in my past

errors in judgment

Love which didn't last

as I wept silent tears

the holes in my heart and soul

ached and cried out

loneliness vast

Through bruises, tears, hurt and pain

through trials, errors, and things full of shame knocking me to my knees

again and again I fought on, seeking that one

Yet something within me refused to quit

I couldn't give ground, give up or give in

From the ashes I rose again

I fought on

Stronger than before

Determined to win

seeking that one

that could fulfill me from within

Then the day came that I opened my door

You stood on the stoop with a smile

Our eyes locked and our nerve endings

all at once ..cried out that w be together at once

As my heart filled with desire

My soul rose ever higher

        

A quick second or two

That lasted forever

As our hearts grew together

and our souls entwined

And I  knew at once, my dream

                was realized

Just a fleeting second in time

Every fiber of my being screamed together

letting me know you must..always...

             be mine

Despite obstacles barring our way

We held on until that fateful day

when at last, the two became one

As we lay together, limbs intertwined

Our souls touched each other

filling the holes in our hearts

With a love for all time

END

Poems From Pain

I wrote three poems the other night, one after the other. They're written on the back of envelopes because when the need to write them hit, it was extremely urgent and didn't want to wait until I found my poetry journal. I used to write a lot, but lost the desire during an abusive relationship in which I was ridiculed, yelled at, and physically "punished" for writing. Since then writing has become very difficult for me.

I realize I have been gone for a very long time from my blogs and I am sorry for that. I finally have some idea as to what happened with me and as my thoughts settle down, I will eventually write and describe what happened. I am sure I am not the only chronic pain patient who has reacted the way I did, specially those who have dealt with chronic pain for many many years.

Anyway, here are the three poems I wrote the night before last. These poems are copyrighted to me and can not be reprinted, re-posted, downloaded, or used in any manner by anyone else, without my consent.


The Bottomless Pit
© M. Hull Jan. 2, 2013

Lost in the depths of darkness
The bowels of despair
This bottomless pit...
How did I get here?

Stuck,at the bottom of a deep well
Looking up for any sign of light
  none to be seen

How did I get here?

                                                                                               
Praying, wishing, hoping to be saved
   prayers... unanswered
   wishes ...a fool's errand
   Hope...fades to nothing
   nothing left here
   a barren heart
   desiccated soul

As day after day..
   week after week
   month after month
   year after year
pain tears at my soul
    ripping it to shreds
   devours my heart
   destroys what little is left of me

still I wonder..
How did I get here?

I fought for years beyond counting
holding tight to hope
   ...all for nothing

Now here I sit, deep in this pit
   this pit of despair
   with pain my only company

How did I get here?

easy...
I got here through hours, days, weeks, months...years
   unending pain
   increasing disability
It took all I held dear away from me
all abilities...gone

until all that was left...

Is this pit of despair

END


Darkness of Despair
M. Hull © Jan. 2, 2013

I am lost
   blind
   deaf
   dumb
here in the dark

Pain is all I feel

Pain I fought for years
The fight in me is no more

                                                                                   
why bother?
  I can not win
   The pain always overwhelms me
   the dark always surrounds me
   until I am drowning
   the fight washed away


Blind
Deaf
Dumb

Nothing to see or hear
my cries for help go nowhere
   for there is no help, no succor, no healing
   this pain will never end

stuck forever... lost forever
drowning in the tears of pain
deep within the the darkness of despair
END


Grip Of Apathy
M. Hull © 2013

Cold fingers of apathy
reach out and grab me
pulling me down
   into the abyss

No struggle can beat this
no strength can break it's grip
try as hard as I can
..it always fails

falling
   falling
       falling

down
   down
       down
into the deepest darkest pit of despair

                                                                           
swallowed whole

Now I live there.

END


Basically what happened is pretty simple, and so dang common for those who live with constant pain or illness. With the Cymbalta came slightly lowered pain levels. This allowed me to begin to get an actual life back. A life where I could go to the store, go visit friends, go swimming, even go away for a weekend with my DH and have a blast. I was able to cook a few nights a week, do some cleaning every day. Pain crisises became rare as the medication removed the intensity, th sharpness of my pain. Yes I still hurt, but it wasn't as sharp or intense as without the Cymbalta. I got used to this , loved it and threw myself into it with great relief and happiness.

Then came a medication screw up thanks to insurance. So I had to go 2 weeks wihtout Cymbalta. As a result my blood level dropped and my pain went back to its usual 8-10 every day, with the same old sharpness and intensity (butcher knives stabbing the joints instead of a fist in a boxing glove..sharp pain instead of dull) and I ended up back in bed. It took 6 weeks to get the Cymbalta back up to proper blood level. But even then it was too late, I had lost my "new life" even though it was still at the beginning. This hurt soooooo much, to get some back and to lose it again.

I gave up. I no longer wanted to fight back. I was tired of the emotional hurt that comes with losing the new friends you made, losing the ability to do things, losing the lower pain levels etc. etc. So I stopped trying.

It took me until yesterday to figure out what was going on, and it didn't start bothering me until a couple weeks ago. Prior to that I was perfectly happy to be stuck in apathy and doing nothing. It is safer.

That's pretty much it. Hopefully I can write more in depth about it.

Video Blogs on YouTube

Thanks to it being more difficult for me to sit up for long periods of time, I decided to start doing video blogs (Vlogs) on You Tube. I did a group of videos that basically give my history of chronic pain and how I got to where I am today. Since that story has already been told on this blog in the post 30 Years Of Chronic pain, I won't include that videos here. However, I will post other videos to the blog for people to watch if they want to.

I did one the other day about safety with medications. I also did a written post on this blog for the same topic, so I don't think I need to link that video. However, today I started a series of videos on judgements. Since people with chronic illness and / or chronic pain are judged in many different areas, I have chosen to do this topic as a series of videos. For the first one I chose the topic of how chronically ill people and people who suffer from chronic pain are judged for their diagnoses such as being told that illness doesn't exist, it's all in your head, you don't look sick and more. I hope the video is educational and of value to people who watch it.

I also made a request of viewers and I wish to make the same request of my blog readers also. So here is the video explaining my request.

Thank you everyone!

Taking Proper Care of Prescription Medication(s)

Many chronic pain patients are on different medications. Some are for the pain and others are for the condition(s) that is/are causing the pain and or depression. Many of these medications can be controlled substances, or have a street value as addicts have found they can give the “high” that they seek. Surverys asking teenagers if they have taken medications out of a family member’s medicine cabinet have shown that many teenagers have done just that. Also there are “parties” out there called “pharma parties” (aka “candy dish” or “trail mix” ) where people dump different pills that they get out of those medicine cabinets then just take a handful in an attempt to get high. These parties have resulted in overdose deaths from heart or blood pressure medications or even narcotic pain medications, psychiatric drugs, etc. all being mixed without any knowledge of what they are doing.

It is a chronic pain patient’s responsibility to keep their medications safe from theft. The best way to do this is to keep the medications in a locked box or safe of some sort, not in the medicine cabinet in the bathroom or a cabinet in the kitchen. All medications should be stored in a locked box or safe. If more people took their responsibility seriously less thefts of their medications would occur. As a chronic pain patient here are some tips to keep your medications safe.

1. when picking meds up at the pharmacy, be careful to not advertise that you are picking up pain medications. Always check to be sure the medications are correct before leaving the pharmacy.
2. put the bottles in a locked box or safe and make sure that you do not share the location of the key or the combination with others. Do not leave the lock box in plain sight either.
3. remove labels from all empty prescription bottles before throwing the old containers out (or reuse them to store small items such as screw, nails, beads for crafts etc.) or recycling them
4. shred the labels to ensure that someone going through your trash can not read the label and know you are on pain medication
5. shred pharmacy receipts that list the names of your medications for the same reason as number 4
6. Do this for all medication, both prescription and over the counter

By protecting your medications in this manner, you greatly reduce your chances of having your medications stolen by a family member  or friend. You also decrease the chances of drug addicts finding out what medications you are on by going through your trash.

You are responsible for how you handle your medicine and being careless is not an excuse, especially in today’s political climate of removing pain meds from people. The more often you have to call for lost or stolen medication, the more likely you will be labeled as an addict or diverter of your drugs. Now, just a single instance will be enough to be labeled and having your pain control revoked. So take your responsibility seriously.

Anyway, these are the things I do to protect my medicines, both prescription and over the counter. If I am missing anything, or anyone has ideas on better protections, please feel free to comment, or email to let me know!

More Reading and Thoughts

I am continuing to read the book The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. It looks like there is going to be a lot of record taking. Tracking pain levels through the day, as well as graphs for activities and pain level on the same graph (to show correlation between the two), tracking flare ups daily, and weekly, as well as individual write-up for each flare. The idea behind all of this tracking is a good one and I am sure it will help because I agree with the statement that the more I know about my pain and how it affects me, the easier I will recognize areas that I can change to gain better control and less pain. But wow does it look rather overwhelming to just keep all those charts every day, almost a job in and of itself LOL 

I've gotten to the part about setting goals, I am thinking I will set 2 to start with. The first is to help me feel like I'm actually achieving something every day, so I will try to do at least 1 to 2 loads of laundry per day. The second will be to fill out all these charts LOL 

Because my depression and apathy are so deep, and my ability to move around is so low, I am taking the advice from one of the other books regarding pacing from a place a being bedridden. It basically said that I may have to start out with something very small, that someone else may not see as a big deal, but since I've been doing almost nothing for 18 months or so now, it is a big thing. It is important to help re-build the desire to fight again, to get better, especially for those like me who are coming at this from a place of having given up and letting the pain run my mind and my life for so long. This will take a while, one small thing at a time because if I try to change lots of things at once I will set myself up to fail.

Interesting statement I just read. I did some of the exercises that are on the book, on the website for the book. I did one about activities and avoidance of those activities due to pain. There were a couple that have not changed due to my pain. The comment was that even though I am thinking I do nothing, those couple things prove that this is not true, that I am still doing something. When I read that it kind of gave me a little jolt, one of those "duh! Missy!" jolts. I've been so focused on what I haven't done every day, that I ignore what I have done.  

Gosh I feel like I'm having to learn how to live all over again. hmmmm...I guess in some ways that is exactly what I am doing. 

My pain wasn't too good today. We have bad weather this week and stronger weather moving in today, which is what woke me at 4AM. All the muscles in my back and pelvis were tight so I took muscle relaxers and applied the heating pad, which has helped. I also took my meds, which has helped as well. I did some mild stretching that the physical therapists taught me to help release the tension in my back and pelvis muscles, this also helped. I did some breathing and am refusing to let myself think the catastrophic thoughts I usually have running in my head. I'm sitting at a 7, but it is not rising like it normally would be. Instead of just letting it run rampant, I tried doing things to help control it and it is helping. Usually when I wake up this way, by this point (2 hours later) the pain has gone up. But so far, I am controlling it and who knows, if I continue to do that I might actually make it go down and not hit a 10 (pain crisis) when the thunderstorms go through today. Does this mean that I am doing it? I think so!

Today will have to be a rest day with the exception of filling those forms.

My brain is still working over the fear. I will probably do some stream of consciousness writing in my written journal to see what comes out, then hopefully I will be able to post something here in a couple days that talks about more reasonably than stream of consciousness writing allows.

Edited to add at 6:47AM: I just took the test about how my husband's response to my pain issues affects me and possibly our relationship. Finally, a really GOOD score! It asked me to rate by frequency on 0-10 how often he does or says things like "Your pain interferes with my life", "you can't be in as much pain as you say" and similar negative things. It then asked me to rank whether I liked or disliked when he says those things. For the entire list I got to say 0, because he doesn't say those things to me. This doesn't mean that he never talks about being frustrated or concerned, but he never throws it in my face, tries to make me feel guilty, or anything like that. He has been so immensely supportive, understanding, and helpful. We've talked about this many times, and he does express that he occasionally feels a twinge or frustration or similar emotional reactions, but it doesn't go beyond that twinge because he knows this is not my fault and he loves me the way I am.

It felt good to get a good score on something! LOL

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.

Cartesian Model and Gate Control Model of Pain

Living with chronic pain is extremely difficult. With new research have come new ideas and understanding about how pain works. Sadly physicians, people in general, medical personnel etc. are still being taught an outdated model for pain. That model is the Cartesian Model of Pain. This basically says that all pain is a direct result of tissue damage/injury and every person will respond in the exact same manner to the same injury. In other words a broken bone gives a certain amount of pain and every person will have the same amount of pain as a result of that injury.

Research has proven this to not be true. PET scans and fMRI's have shown that the parts of the brain responsible for pain sensations light up even when no specific injury/illness can be found for that patient. The Gate Control Model Of Pain (by Ronald Melzack and Patrick Wall) says there is a gate, the spinal cord, which allows pain signals to travel to the brain. When that gate is closed, no pain signals get through. When it is open, pain signals get through. Further they have shown that the gate can be opened by injury, emotions, mood, thoughts and memories.

The Gate Control Model makes sense to me simply based on my own experiences with my pain. Most CP (Chronic Pain) patients know that stress, levels of high emotions, focusing mentally on their pain and more directly affect their pain levels. We often tell each other about how high stress levels, anxiety, depression and more will increase our pain. We say this because we have experienced it. I know that when I get angry, my pain rises. I recognize that when I am angry my body tenses resulting in my muscles tightening which leads to spasms, pressure on the injured areas and results in an increase in my pain.

Despite the research showing that psychological and social factors contribute to a patient's experience with pain, most physicians and other medical professionals, still work under the Cartesian Model because that is what they are taught in school. Most physicians do not receive training in chronic pain, or pain management. Instead they are taught the scientific method and as a result see pain as a cause and effect only so far as physical disease/injury (cause) results in pain (effect). Many do not realize that other issues also effect pain. This is not good as the result is that people who live in chronic pain are not receiving the optimal therapy for their pain. They are not being taught things that will help them manage their pain.

It doesn't help that most people also have outdated ideas of how to deal with chronic pain. We are not taught that chronic pain exists. Most people's experience with pain is acute pain. You sprain your ankle, rest it and allow it to heal. This works for acute injury, but does not work for chronic pain. In fact this method of dealing with chronic pain will make the pain worse. Included in the area of what works for acute pain but not chronic pain are "no pain no gain" and "push through it". These beliefs actually cause more mental anguish and suffering for chronic pain patients.

Chronic pain is affected by the original injury or disease (and progression of same), the people around you, your own thoughts/beliefs about pain, and more. So far the most effective treatments for chronic pain have included methods which include all these areas, rather than choosing one or two and ignoring the rest. Many do not believe that mood (for example) affects pain but consider this: You have had a bad day at work, your mood is not good, and by the time you get home you have a headache. Most people have experienced this. Part of the reason is that the area of our brains which control our emotions, is one of the areas that lights up in response to pain signals. In a person with chronic pain those stressful emotions can trigger pain signals and vice versa.

Ok, this entry has focused on factual information. Now I am going to write a more personal entry.

How Do You Deal With This?

This was written at 5:10AM on March 25, 2012 in my written journal. I was having great difficulty sleeping as usual and my mind was running with thoughts. I wanted to post on here but didn't want to disturb my husband who was asleep beside me by setting up the laptop in the bed. So I wrote in a notebook and am copying it here.

Sunday March 25, 2012 5:10AM

How do you fight depression and apathy when your physical ability to move is so screwed up? I used to fight depression by doing things such as going for walks, cleaning the house, taking a drive, and similar activities. Of course there was the mental effort as well such as recognizing when I'd start thinking life sucks or I'm a bad person etc. I would consciously force my mind to think of something else then distract myself by getting up and doing something.

I am failing at fighting my depression and apathy now. I can't use physical activity as a distraction because I have to pace myself. Cleaning, for example, gone are the days when I could tackle a room and do a heavy cleaning for a couple hours in a row then move on to the next room. I used to be able to clean and rest in 10 -15 minute bursts. Now I have to clean in 5 to 10 minute bursts; clean for 5 to 10 minutes, rest (sitting down) for 10-15 minutes to gauge my pain level, clean for 5 to 10 minutes and repeat until I hit a 7 on my pain level or the cleaning is done, whichever comes first. More often than not, the 7 comes first now since I start most days at a 6 and can't stand for more than 3 to 5 minutes, and my pain steadily rises while I'm on my feet. It used to stay more constant and the cycle was more for me to be able to gauge my pain level than because I couldn't stand. It doesn't take much to make me go from a 6 to a 7, especially if I am moving around. The resting time just reminds me that I am disabled. It serves as proof of the negative thoughts that cross my mind, making it harder to fight those thoughts since they are true. Thoughts such as "I can't even vacuum the living room in one go anymore"--true. "I can't stand long enough to cook dinner anymore"--true.

Every attempt I have made to get back on a schedule has failed. I can do it for a few days, maybe, then its gone. Am I trying to fix too much at once? According to the chronic pain books I bought I am. But starting with just a small thing like taking a shower every day feels like it isn't enough, like I should be doing more. Then, because the shower energizes me and I feel I should be doing more, I do other stuff as well such as cleaning or playing with Bridgette and send my pain sky-rocketing for a day or two (sometimes more). This makes the next day's shower impossible because my pain is too high and I can't walk right, if at all and boom I'm back where I started.

Maybe I need to start with the mental stuff more than the physical? Maybe I need to change how I see only what I can't do instead of what I can do; change only seeing what I haven't done instead of what I have done and change telling myself I can't do this or that out of fear of the price I'll have to pay for the activity either through much higher pain levels, pain crisis, being unable to walk, or a combination of unable to walk and more pain/crisis. The result of this fear of the cost is that I do nothing, feel like crap about it, mentally beat myself up and the cycle continues. So how do I change this? The same way I changed my self-esteem from "I never do anything right" to a more balanced view by writing lists each day of things I did right, thus re-training my brain to see both? I'm not sure how to make that work in this situation. Yes my self-esteem has taken a hit, but I haven't reverted to seeing myself as a bad person, no good, or unable to see the things I do correctly. Maybe I just need to change the negative self thoughts to a more positive statement. For example instead of saying "I can't cook dinner anymore" change it to "I can cook dinner if I plan ahead, pace myself, and use the bar stool like I did when I cooked Thanksgiving dinner."

Changing those thoughts is so hard, in part because I hate my condition. I hate what it has caused me to become. I hate the idea of yet again having to "fix" myself. It is exhausting! I've been pretty much dissociating  from my life because it makes it easier to be stuck in bed every day, in pain, physically disabled, and unable to do much, if anything, at all. By dissociating and not really thinking I can ignore some of the physical pain (which is good) but I can also ignore everything else that bothers me. It shuts off the thoughts of being broken etc., shuts off the fear of movement increasing my pain because I'm not moving or trying to do anything as a result I don't fail at doing things and the self-recrimination doesn't start. Of course this means I also don't have anything I can look at and be proud that I accomplished it. But in a way that is also good because having pride/joy in an accomplishment makes me want to do more, so I do and my body slaps me back down hard, usually with a pain crisis that lasts at least a couple days. During those couple days Ron has to help me on and off the toilet, he has to help me put on or take off clothes, etc. This is humiliating to me so I want to avoid it.

So where is the middle ground? Is there a middle ground? How do I stop mourning for everything I've lost to this pain? I was doing okay with it until the time I fell and hit the marble topped end table and added another fracture to the SI joint about 6 years ago. This resulted in constant swelling and a large jump in my pain level. I had started to accept the new level and was doing better until I received yet another fracture line when I fell on Christmas Eve 2010. It is since that last fall that I've gotten angry, depressed, sad etc. and can't seem to get myself out of it. I know part of that is because I am stuck in bed every day and can't stand for more than 3 to 5 minutes and because I know that fall was not my fault. Like the fall a few years ago (the table one) this latest fall that resulted in a new fracture line was directly caused by someone else's actions not my own and it wasn't an accident. The fracture wasn't intentional but making me fall was. When I fell I hit the left SI joint, right at the base of the scar that is directly above the joint, on the end of the chair at my computer desk in the living room and I hit the right SI joint on the edge of my desk; both at the same time because the chair was pushed in close to the desk and there wasn't enough space for my fat butt to go between the two and just hit the floor. This chair, like the end table, is solid wood and built really well. Ron's dad built a couch, two chairs, 2 end tables, and a coffee table for Ron and his first wife many many years ago. They are very solid pieces of furniture. I can't remember how many times I have broken my toes by accidentally hitting the legs of those pieces of furniture. lol

I am terrified that I can't win this time, that I just don't have it in me anymore to put myself back together again, to keep fighting. No I am not suicidal. I mean that I don't seem to have it in me to learn how to function despite the new normal for my pain. I seem to prefer to just space out, dissociate, rather than face it and fight to get some semblance of a life back.

Everything just seems like so much more work, even the simple little things I can't just do them without thought and planning first. I have to think of every step involved in that task, plan how to best complete the task, come up with a way of doing it in a manner that causes the least stress to my body thus the least impact on my pain levels and after all that, then I do the task. This takes a lot of mental and emotional energy and often seems overwhelming. If my first plan fails I have to start over trying a different way, over and over until I find one that works. Then this is complicated further by the variable nature of chronic pain, some times what worked one time, will not work the next time which results in having to think and plan again. It is exhausting to have to do this for everything in my life from simple things like reading a book to Bridgette, taking a quick shower (HA HA no such thing as a "quick" anything anymore), doing laundry to everything healthy people do without having to think of every little action/movement that goes into an activity and plan how to do each movement. It is exhausting mentally, emotionally, and physically and even when I do manage to find a way to do something, I still end up with a rise in pain levels though that rise is not as high as it is when I don't plan things out.

What makes it worse is to have healthy people in your life who do not understand and just saw me as lazy or faking it to get attention (such as my family members [the family I was adopted in to when I was 2 years old]). On this issue I am fairly lucky because the people in my life do get it and do understand that chronic pain can vary from day to day (or even multiple times within the same day) and thus affects what I can and can't do from one day to another. Over the years I have lost the friends and family members who did not understand either because they left me or I chose to end the relationship.

I am just so exhausted and feel so discouraged, afraid, and lost.

Changes and Getting Stuff Done

As I have mentioned before my brother, Brian, lives with me along with his fiance, Stephanie, and their daughter Bridgette. Brian's eldest child moved in about 5 days or so ago. She is 17 and her name is Heather. She is a sweet, cute, lovable, intelligent person. I'm not sure why but since she arrived I have had more energy to do things than I've had lately. I've spent more time in the living room in the past couple days than I have in months. I've greatly enjoyed talking with her as well. Maybe this response in me is a result of having someone new in the house, which brings new energy. I had a similar response when Stephanie and Bridgette moved in 4 years ago, then again when Brian arrived.

I've been battling with my depression and the apathy it causes for a while now. Both got worse after the yard sale I ran in April 2011 because my pain got a lot worse. It is so hard to struggle against depression and the apathy it causes. It takes a great deal of energy and most of the time I just don't have that energy. I just can't summon the energy. Even worse, I can't summon enough emotion to actually care to do anything. I know this just makes things worse. I know that part of fighting depression is to choose to do things even when you don't want to because medication is not always enough to remove depression.

Well for the last 5 days or so it has been a bit easier to actually feel the desire to fight back and to do things. So I took advantage of it. Yesterday I went through the piles of mail that was sitting on my night stand and some on the desk in my room. Since I pay my bills online, I tend not to open the ones that have the same payment amount every month (Mortgage, car payment etc.). Since I now keep the payment information, including the confirmation numbers on the computer in word documents, I no longer write on the bill itself like I used to. (paid, date, amount, check #) So all the papers were piled up waiting to be filed. I went through all of that, filed every thing, then put all the stuff for 2011 into large manila envelopes ready for storage. I did some cleaning in my bedroom and some in the living room, including cleaning the interior of my desktop computer. I also did our taxes for the year.

Last night was a rough night, very stressful. I did not sleep well, kept waking up from pain. I also spent a few hours talking with Heather to help her deal with things that were bothering her as well as her own depression symptoms.

Today the weather is doing the "waiting to rain" thing. The sky is completely cloud covered, it is very cool and the air smells like rain.

As a result of those three things (doing stuff, stress, lack of sleep), my pain is very very high today. I've been sitting at a 9 all day. About 20 minutes ago my younger niece Bridgette stepped on my toes (one of which is infected and hurts) causing me to lose my balance and fall. As a result my pain is now rising and I am headed for a pain crisis. I took my breakthrough meds in the hope that it will keep me at a 9 and thus avoid the pain crisis, but I'm not sure it will work. It rarely works when it is a fall that causes my pain to go up, specially if I fall on my hip or buttocks as that causes intense jarring of the bones in my pelvis that are broken. Broken bones do not like being jerked around LOL

Despite the higher pain level, I still feel pretty good mentally. I felt very accomplished and proud of myself yesterday, and despite today being a very bad pain day, I still feel satisfied, proud, and like I accomplished something. Those are good feelings. :)

Another thing that made me feel really good today was a package that came in the mail. I ordered a Nightmare Before Christmas hoodie for Heather. Kind of a "welcome home" gift. She is really happy with it and it made me feel good to know she likes it.

OK I have to lay down. sitting is just hurting far too much.

I'm hoping that I can continue to find the energy to fight back, especially against the apathy.

Pneumonia...a good thing?

I signed up for some stitching related things, so of course I got sick. Seems to be how my luck runs. LOL

3 weeks ago I was diagnosed with pneumonia so I've been pretty sick. Lots of coughing, wheezing, and congestion. But I have noticed something about being sick, when I am sick I don't feel the pain in my back as much (this is a good thing). I think it's because I feel so horrible all over that it just kind of blends in or is overshadowed if I feel extremely horrible. So I guess being sick does have it's good side!

Though body aches on someone who suffers from chronic pain seems monstrously unfair. It's like "Ohhhh give her body aches, she doesn't have enough pain!". LOL I try to find amusement in things, it keeps me from going too crazy.

I'm not feeling as depressed as I was, which is nice. I'm hoping this improvement isn't just because I'm sick. I don't think it is because I am finally starting to feel better and the overwhelming sadness isn't returning.

Other than being sick, nothing else is going on. I am feeling a bit better today so I am going to try and stitch a Christmas Ornament for the challenge I joined. I was hoping to have at least 2 ornaments stitched by now, but no such luck. I'm going to try a simple design because my concentration isn't as good as it normally is and I'm afraid if I try something more difficult I'll just end up having to rip it all out.

Just wanted to let everyone know that I'm still around. I hope everyone is doing well!

Questions ...questions..questions

Chronic pain is bad enough on its own. Having pain all day long, every minute, no matter what just plain sucks. But no matter how bad the pain is, one's mind can always makes it worse. The never-ending questions, the constant comparisons of my abilities vs. someone else's abilities, the constant comparison of what I could do a few months ago vs. what I can do now. There is nothing that can't be made worse by one's mind's ability to point out every negative it can find, and it can find a lot of them.

My mobility is severely curtailed yet again. My new normal is pretty much spend all day sitting in my bed staring at stupid stuff on the internet. Cooking is no longer something I can do, neither is cleaning or laundry for that matter. I sit here trying to find amusing things to distract myself with and failing.

My brain constantly points out the things I could do just 3 months ago, that I can't do anymore. When it points those things out it includes the thought that I am "broken" or a "failure" or that my DH deserves better than me. It is amazing how debilitating these thoughts are. It doesn't take long before these thoughts bring me to a place where I don't even want to try anymore. Instead I just want to hang out and let each day run into the other until I don't even know what month it is, forget what day it is. I know that means I am depressed but my meds don't help.

I spend every day in my bed, reading stupid crap online and just coast through each day. I can't find the energy to even attempt to make things better for myself and those around me. The idea of even trying terrifies me because I know how I behave and react to things and I know that eventually I will get angry and then I end up saying something that can end up in a fight that causes yet another fracture like the one I got on X-mas Eve 2010 when I was deliberately shoved so I fell and caused another fracture to my SI joint as a result of defending someone from what I considered to be over-reacting abusive behavior. The idea of repeating that has scared me so bad that I hide in my bedroom, with the door locked, all day every day rather than risk a repeat of X-mas Eve 2010. Having my clothing ripped from my body while being deliberately knocked off my feet so my pelvis lands against heavy wooden furniture causing a new break terrifies me.

Am i depressed?? Yes

Am I scared? Yes

Do I hurt? Hell yes. I now live with a pain level between a 6 and an 8 every day, and tht is before I move around or even just get out of bed to go to the bathroom.

Do I feel worthless? yes

Do I feel broken? Yes

Do I feel guilty? Oh Hell yes

Do I wish I were dead? Sometimes

Am I terrified of dying? Yes because what if there is nothing after this life, nothing at all. Just *poof* ..gone. terrifying

I have little to not desire to do anything that has ever brought me pleasure; reading, stitching, etc. nothing. I just want to curl up hide and die somewhere.

I don't want to try anymore. I'm exhausted, broken, and so damn sad.

I feel like I am at the very end of my rope; grasping the tiny threads that are left at the cut end. I no longer know why I am holding on. I no longer know why I try to hold on. My future seems blank and empty.

The only good thing in my life are my children and my husband and I am terrified that with each passing day I am losing the brightness they offer me to hang on to; becoming paler and easier to just give up. The idea that their lives would be happier without me in them is now a very strong idea and that scares me even more. Yet, if I were to quit and die, they would a lot more than they currently hurt as a result of my condition. It is that thought alone that keeps me going. I don't want to hurt the people I love the most.

Sam, Kyle and Ron; No matter what, I love you very very much. You really are the world to me. You three are the only things left in my life (at least it feels that way right now) that bring me any pleasure or happiness at all. Please, do not hate me for my weakness and failings in fighting this pain every single day. Please know that you are NOT the reason or cause for my depression and negative emotions. You three are the only bits of happiness left for me. I would do anything, give anything, to be able to be everything you want me to be; to make you happy for more than 5 minutes at a time.

I am struggling.

I am not doing well right now.

I do not know if I will get better...


but I do still hope that I will.

Hope supposedly never dies...

but right now...
I wish it would.

I am tired.
I am tiny, scared, alone and
hurting.

Emotional and physical pain
combine
creating hell on earth
hell within my own heart and mind

emptiness
bleak
black
no real hope
just resignation that hell is all I get
wishing for release
even if release means death
anything..
to make it end.

I am so tired
exhausted.

This is what my depression looks like

trapped in my mind
looking out at my life
existing
not living

I've been suffering from a pretty severe bout of depression these last few months. I know it was set off by the increased pain, new symptoms, lack of mobility, and the improper care of my doctors. I recognized it a few weeks ago and despite knowing that I suffer from depression I still found myself trying to deny it. It still amazes me how denial can be my initial response to a bad depressive period. After all these years, you'd think I wouldn't waste my time and energy trying to deny my feelings. But nope, I still do. I am not sure if that results from a part of me that still wants to believe my depression is temporary, or if there is still a part of me that doesn't' believe I have clinical depression.

I was reading someone's blog. When I find a blog I really like, I will go back to the first post and read the entire thing. I don't usually read "mommy blogs" because my children are much older (only my youngest is still considered a kid at 15, my oldest is 23) so I don't relate to the constant running around with young children. However this blog also included discussing such things as the author's experience with depression and the past experiences in her life that probably caused it. When I found this blog last week I read the last few posts, then went ahead and started from the beginning. Her post entitled "This is difficult to write" really hit home with me. She kept repeating "This is what depression looks like", and I found myself nodding and agreeing with her. Our situations are different but some of our feelings are the same.

Reading that blog entry made me realize that I have been denying the truth for a couple months now. I am struggling once again with depression. My meds are obviously still helping because I have not reached the point of wanting to kill myself or harm myself, but the feeling sad all the time etc. is there. For me my depressive episodes look similar to hers in that I can't find much value in myself or my actions (specially when I am immobilized and stuck in bed, it's more like "What actions?").

There is a lot of blaming myself.

A lot of feeling guilty

A lot of worrying that others can't possibly want to stay with such a horrible person like me.

There is a loss of interest in anything that I normally find enjoyable such as writing or stitching.

There is a lot of feeling alone, even though I am not.

Being isolated, in part by my own withdrawal and in part by not being able to go anywhere or do anything (which is beyond my control).

There is self-doubt and self-loathing.

There is asking myself "why me?" and "What did I do to deserve this?".

There is minimal to no sex drive at all, and even worse no desire to cuddle, talk, or in any other way be intimate with my husband. (This is not his fault at all, it is all inside me and in part stems from the self-loathing, guilt, shame, and anxiety).

There is waiting every day for him to come home and say he wants a divorce. Irrational, I know this mentally, but emotionally the terror is there and no matter what I tell myself I can't make it go away. Even though he is happy to see my when he gets home from work, rather than feel relieved I feel and think "there's always tomorrow. I'm broken. He can't really want to stay with someone who is broken so, he'll do it tomorrow" and the worry starts over again.

There is no desire to go anywhere or do anything. The hopeless feeling that comes with knowing if I even try, a pain crisis is my reward, so why bother?

There is the non-stop pain that just makes everything seem so much worse. Makes me less tolerant of mistakes I have made and so damn tired. Fighting and dealing with the pain all day long leaves no energy for anything else. That lack of energy erases all desire to do anything, and that loss of desire and mobility increases all the negative emotions and self-destructive thoughts. It just goes round and round.

This is what my depression looks like.

It sucks.

I am considering asking for a referral to a psychiatrist, rather than continuing to get depression medication from a general practitioner or my pain doctor. Maybe a psychiatrist will know of a medication that will help more than the one I am on. Also, maybe a psychiatrist can help me find a therapist who deals with chronic pain patients and I can get some help.

I've dealt with depression caused by many things in my past (childhood trauma, divorce, abusive relationships and rape). I remember the tools I learned to help deal with those times, work through them and move on without depression or medication for depression. I've tried those tools with this situation and they don't work. I think it is because my mind knows that this is not a temporary thing. I know this is permanent and will get worse over time just as it has for the last 30 years. Knowing that there isn't an "end" to this situation seems to be sabotaging my ability to pull myself out of depression. Maybe there are other tools for dealing with depression caused by a permanent life change. I hadn't really looked into that before. But I think I have to.

I can't keep living like this.

I can't keep hurting the ones I love the most by making them watch me just scrape by and thus worry if I will eventually say "fuck it" and kill myself.

I want my life back.

I'm scared though. Every day is so hard and I already know that dealing with depression is hard also and I don't feel like I have the energy or the strength to deal with two hard things at the same time anymore. This makes me afraid to try because I might fail and if I fail my loved ones will pay the price.

This is what my depression looks like.

Thank you Melissa for having the courage to post what you did on your blog. You've made it possible for me to, once again, open my eyes to my own condition. You've made it possible for me to find a tiny piece of myself that wants to stop existing this way, so I will use that tiny piece and seek help. Who knows, maybe that piece will grow. So thank you very much!