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.