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.

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!

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.

The Wonders of Medication

I am very glad that I gave Pristiq a full two weeks before deciding whether or not to continue taking it. The headaches stopped after 5 days, which is great. I have now been taking this medication for about 3 weeks and I have noticed improvement in how I feel already. Emotionally I feel more awake, alive, and happier than I have in a very very long time. I did not realize just how bad the depression had become until I started to feel better. I had gotten so used to feeling sad, blah, and just emotionally and mentally exhausted all the time that I had not realized when it got worse.

I am sleeping better than I was also. I have fewer nights where I just can't sleep no matter how physically tired I feel. I take the Pristiq before bed because it said it could make me drowsy. To be on the safe side I took the first dose at night and it did make me drowsy, so I stayed on the before bedtime schedule. Being able to sleep more regularly has helped me in so many ways. I have more energy during the day. With the increase in mental and emotional energy I am better able to deal with the pain. Sleeping more regularly has also made it easier to deal with the pain.

I am keeping an eye on how my feelings change because I know that I won't get the full effect of the medication for 6 to 8 weeks. Part of me is excited because I've already noticed improvement and how it seems to get a little better every day.

It really is nice to feel alive again!

Still Around

The last few days have been fairly difficult. My pain has been pretty bad, though my meds have prevented a pain crisis. The headaches from the Pristiq have not completely stopped, instead my head has that feeling you get that you know could turn into a headache even though it doesn't hurt at that moment. Because of that I have not been spending much time on the computer. I was concerned that the monitor would cause me to get a headache as it did the other day. I think I will be asking for a different medication. I've been sitting at the computer for about 20 minutes now and I am getting a headache. That normally does not happen to me. The only new thing is the Pristiq so I am pretty sure that is what is causing the headaches. This leaves me with two choices: change the medication, or stay away from the computer. Due to my back, my computer is how I stay connected with friends and family. I've met a lot of wonderful people through the computer, people who are now close friends of mine. I am not willing to give that up, so I will request a change in medication instead.

I have continued to stitch and enjoy it. I posted an update on Christmas Dreams on my stitching blog. I also posted book reviews of the stitching books I received for my birthday.

I finally managed to get some sleep. I had a drink which, of course, made me sleepy (which is why I had one) and I went to sleep. I slept from about 8PM Saturday until almost 2PM Sunday! YAY! I really needed the sleep. But of course, now I am wide awake. LOL

I had a great idea to blog about tonight but now my head hurts and my mind went blank, so I'll just stop here. Maybe it will come back to me tomorrow LOL

Another day goes by

Today wasn't too bad of a day despite the rain. I talked with a friend of mine today. He had back surgery (fusion L4-5 L5-S1 I believe it was) back in August. The fusion is doing very well and his back pain is much better! I am so happy for him! He sounds a lot better than he did over the past year while he was suffering so badly with pain and multiple doctor's visits and their stupidity. Instead of that under-tone of depression, exhaustion and pain, his voice is clear, strong and happy. I am very happy for him!

I did some catching up on blog reading and some stitching as well. My back hasn't been too bad. Though I got another headache today, this time it didn't respond completely to Excedrin. So I've had a headache all day. I had to get off the computer because it was making the headache worse. Even now, looking at the monitor is making the headache more painful but I am still going to try to get this post up. I am pretty sure it is the Pristiq causing the headaches because it is listed as a possible side effect. The paperwork said it should clear up after about a week, but so far it went from a headache that went away with one dose of Excedrin, to one that has lingered all day despite Excedrin. Tomorrow, if I have another headache (if so it will probably be close to migraine pain) then I will stop taking the Pristiq and request a different anti-depressent.

My neighbor came over today and I gave her a few tips on cross-stitching. She started a design last week but didn't do very well with it. I think it was because she chose to use black fabric and stitched at night with poor lighting, thus she couldn't see the holes very well. Black fabric is not the best choice for one's first counted cross-stitch project. I let her borrow my book "The New Cross-Stitcher's Bible" by Jane Greenoff. It has a wonderful section at the begining about learning to cross-stitch. I figured it may help her to read it.

I did some of the dishes after dinner and a little bit of picking up in my bedroom. So far I have managed to do at least one chore every day this year. I am hoping to continue this and get more on top of household things.

Well that's it for me today! I hope everyone has been doing well!