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.

Year In Review

Due to my back and pelvis I don't do a whole lot like go to the movies, an amusement park or things of that nature. But despite that 2009 just flew by! The best, most challenging, difficult, rewarding and wonderful part of the entire year was having my niece in the house. At least 5 times every day she made me laugh with her antics. She did something that made me a bit sad as well, mostly because I remember my son doing the same thing at her age (2 years) and it made me remember just how my disabilities have negatively impacted his life. Anyway, there was a day a few months ago where I tripped and ended up on the floor. I didn't fall thankfully, but I knew my legs were giving out so I lowered myself holding on to the chair to save myself from falling. (Would have fallen into the chair but I was behind it and knew walking was out of the question!) Bridgette got scared and started to cry but she stopped real fast when I told her I was ok. She said "Ok!" then grabbed my hand and pulled "Ahma! Bed!". When I was able to get up, she actually led me to bed and told me to get in, which I did. She then covered me with the blanket and said "night night ok?". She was so cute and so serious I tried not to laugh and I thanked her with a hug and a kiss. It was just so cute! Having her here has been wonderful! I've always loved children and did want to have more than 2, but my body can't handle it. I am so grateful that I get to share her life and watch her grow, discover, and learn. Watch her play, laugh, and mimic what we do. It is wonderful!

Homeschooling Kyle again this year hasn't gone as well as I had hoped. Mostly because my back makes things like field trips very difficult. I am determined to make things a bit more fun for him when we start up again after the Christmas break. I am very proud of Kyle, he has done very well. I especially love it when something I am teaching him fires his imagination to the point that when he gets on the computer, instead of playing a game he starts looking for more information on that topic! He then tells me all the new things he has read and how it has made him think of things in a different way. I love it when his curiosity blooms like that! He still hates math but loves science and sometimes he likes history as well.

My daughter Sam has had her ups and downs this year. Learning that she will live with chronic pain for the rest of her life, was very hard on her. Of course this caused her to have many worries and concerns, but she has handled them very well. I am so proud of her! She did not revert to her old behaviors for dealing with stress (violence, verbal abuse, cutting), instead she used all the tools she has learned over the years and dealt with it all very well. She has a boyfriend now, who is just wonderful! He treats her very well and sees her for the person she is, not for her pain. I am so happy for her and I hope the relationship continues as it is wonderful to see her so happy.

DH and I had our ups and downs this past year as well. More ups than downs though, which I really like. He continues to be very supportive, loving, and understanding towards me. He has been very supportive in my bid to overcome the depression that ate me alive for most of the year as well as in my bid to get off my butt more often and do more around here. I am very blessed to have finally found a man like him and I love him so much.

For me this past year has been a struggle mentally, emotionally and physically. Fighting depression is becoming harder for me. Once I get back into the "do nothing" mode because of pain, it is very hard to recognize it and then pull myself out of it. My desire to stitch disappeared for most of the year, though it has woken up the last few days and I started stitching a Joan Elliott design last night (hopefully will have WIP pics for my stitching blog tomorrow). I have worked very hard to get back to cooking for my family, cleaning the house and running errands. I'm not where I want to be, but I have made a start and that makes me feel good. The hardest thing is not beating myself up too badly when I fail or backslide a little bit. Being depressed doesn't help with the pain as it makes it seem so much worse than it really is. It lowers my pain tolerance level and causes insomnia. My pain has been okay over this last year. Not my best year, but not my worst either. Hopefully as I continue to move around, I will get stronger and in return that strength will help me control my pain and even lower it a bit. I know some of my pain is caused by weak muscles that hurt when I use them, not just the broken joint etc.

I'm hoping that I can continue my progress for 2010!

My goals are to continue to do stuff around the house daily, stitch for at least an hour a day, work a bit harder to make home-schooling more fun for Kyle, and continue to fight the depression. I also hope to successfuly quit smoking but I'm not going to promise that one. LOL

A New Beginning, I Hope

I live with chronic pain due to issues with my lower back, sciatic nerve, and a failed fusion of the left sacroiliac joint (which means I live with a permanent compound fracture of the joint to the left of my sacrum, in my pelvis). This pain exists every single moment of every day of my life for the past 13 years. Before that the pain was more intermittent. I take medication for my pain on a daily basis, without these medications I would not be able to function at all.

The injuries to my back and pelvis affect my mobility and what I can physically do or not do. They affect every aspect of my life from my relationships, to my moods, to doing simple chores, to dealing with stress, and everything in between.

Right now I am struggling (and failing) to overcome the depression that has become so much worse over the last year. I find myself having no desire to do anything or go anywhere. This is not good and I have to accept that my anti-depressent medication has stopped working. Until today I did not want to accept that and refused to even think about it. I get so tired of having medical issues all the time. I just want it all to go away! But, it won't, and the time has come to get off my ass and deal with it rather than continue trying to hide from it. So when I see my doctor again on Tuesday I am going to request a change in my medicine and hope it helps.

I will be using this blog in many different ways.

• Motivation to get on a schedule and stick with it
• A place to vent my feelings
• A release for all the thoughts and emotions that run through my head all the time
• A way to reach out and connect with others in a similar situation to mine

I don't really know if this blog will do any good, but it can't hurt. I used to keep a journal (many notebooks that I still have) and it used to be a major help for me when I was dealing with other major problems. As my back got worse and my pain got worse, I stopped using journals as much and now I almost never write in one. I thought maybe doing a blog might work.

I will write whatever comes to my mind on this blog so be forwarned, cursing will occur, as will adult topics such as how chronic pain affects my libido; this is why I listed it as adult content. I'm not going to post porn or anything like that, but I may post about how fear of increased pain and deep depression have caused me to lose desire for sex and even fear it if that happens to be the topic that is bothering me.

I hope to use this blog as a way of helping me get into a schedule, to motivate me back into some kind of a real life, rather than just existing and vegging all the time. I miss going places, doing things, being active, taking care of things..all things I have stopped doing because my pain levels got so bad and went improperly treated for so long. I'm going to start off real slow. It may seem silly to others but its not silly to me. I am going to start out trying to do the following every day

• shower
• do laundry (at least 2 loads washed, dried and folded)
• take niece for a walk or play outside for a little while

It doesn't seem like much, but considering I have little to no desire to do any of that at all (or anything else for that matter) it is a lot. I will add more things as it gets better. I don't expect this to be easy. I expect this to be very difficult and I expect to backslide, get angry, etc. But I will try real hard to stop letting depression and pain rule my life.

I want my life back.