I am aware that I have been really kicking myself while doing an awful lot of self loathing this week because physically I am close to rock bottom. But while spending most of my time reading because it’s the least painful distraction at this point I realized that a quote I’d read some time ago really is true for me. Then & Now. The words returned to my brain & while circling loudly reminding with a forceful nudge to get off my pot. If not…. well… you all know the rest of that one.
The quote: ” No [woman] was ever ruined from without; the final ruin comes from within.”
I’d forgotten, that while peeling another layer from my emotional skin during times of incredible stress I tend to look outward. I’d let myself forget or go into denial that this is a disturbing pattern I create for myself. I’ve been tending to blame some in my team who I know from past experiences have been able to provide me answers. The fact that this is not happening now is where I chose to put my energy, if you can call self loathing an energy. Instead of setting aside the fact that prior help is no longer available where in the past it had been, and moving forward I have instead stuck my head in the mud and have been practicing a pity party for one.
The irony I find in what I have been doing in sticking my head in the mud and trying to distract away from a body that hurts like hell; is that no matter where I turn I find other stories, blogs, paragraphs, quotes, even music and art that speaks to me on the same point. Weird. I look for distractions and find threads that are hanging there creating the impulse to pull the thread, only to keep discover that what I am trying to distract from is being met head on only with that which I am trying not to see.
I know maybe not so weird. But an irony that I’ve yet to figure out for myself. Call me a late bloomer.
I have tried to go in search of something delightfully sunny and as far from pain as I can, as I can think of, and within minutes my brain starts associating with just a fragment of what I am exposing myself to. Even a lovely 1950’s B & W film noir movie that I have seen at least 50 times in my life time. (not exaggerating) Seriously, the herione had chronic migraines. Why or how did I never not associate this before, and why this week? One of life’s strange ironies I do think.
I know there is a perfect logical explanation for this. And there is also a spiritual explanation to this. Some times logic and spirit have a tough time riding together in my world. Other times they gel so well. I have been hiding my head under my pillows along with myself this week because I feel like my world has been slowly and painfully spiraling out of control again. I thought I had fought this battle one last time and from that point on if need be breaking out the heavier weapons would not take massive red tape. The logical mind in me says that I know from 27 yrs. of experience what works, and what does not work. I’ve dealt with “Step Therapy” with my insurance company and suffered through 13 weeks of physical therapy because that’s what my insurance company required of me before the next step in treatment modalities. 13 weeks of PT for a Fibro patient with cervical & thorasic spine disease before any attemting injections into the spine and nerves in hopes that would bring relief. This is just one of my issues that I see as illogical
Another strange irony.
So I take my self on yet another journey today for my authentic self. The me; the self I can not and do not lie to, or in denial with.
I guess my authentic self knew the day was coming when I would face the music during a pity party for one, and recognize that the real irony is that what I am looking for comes from within myself. The authentic me. Not the one who is altered by pain and the corruption that comes with trying to remain a productive and significant soul in the society she lives in. There is strange and sad irony in that everywhere I turned today looking to strip away another layer of the illogic that runs through my life, like my blood does through my veins I saw not much difference. I run into the same thing, the same truths but with different faces. The illogic in that although there is medication that has proven to work, that has caused me zero side effects, that took me from being completely disabled by pain to a functioning person. One who even went back to work part time (okay in a pottery studio, but I was paid & had set hours), to someone who was able to take my life back, to jump back into her saddle with more zest than I ever thought was possible. More than I had in about 13 yrs. That was in 2005.
Four fabulous years. I even decided upon my own that since my pain levels were doing so well and so stable that I’d start decreasing the pain med dosage. It was a smart move. If I did not longer need that level of medication why take it? Right? Logical sounding right? I thought so too and continued for a year in lowering my dosages with the help and support of my pain specialist. By the time I had dropped down to almost nothing the challenge was given to me to see what it would feel like without. This made total logical sense since it had been sometime since my body knew what it was really feeling. I dropped one med completely, the one for breakthrough pain, and the other I lowered to just 5 mgs and was still doing really well. I finally went down to nothing. No opiate pain medications at all. To say it was a physical struggle, is the least I can say.
I lasted all of three weeks. During the time of no need on my part for medication my pain doc was quite enamored with my success. After three weeks of struggling every minute of the day, every night laying awake in pain instead of sleeping I gave in. The need for 5 mgs in the morning was met with no resistance and in fact I was told just how proud she [doctor] was of me, that I was “her poster child” and that she was bragging and telling her colleagues about [my} success. I was actually quite smug with myself too truth be told. Here I was someone who was lives waking up to pain every day, goes to bed hurting every night, does not sleep because of pain have been prescribed all kinds of medications and other treatement modalities over 27 years, have used opiate medication for years and have never had a problem with it, never had a negative response, never had to fill early, never built up a tolerance so increasing spikes in dosage was never an issue for me, never lost an RX, never have given my physicians or pharmacist one iota to be concerned. I too was feeling like a success story. I’d done all these things, continued to do many, and have made so many life style changes to succeed in having some semblance of a normal life.
I am not being illogical or unreasonable with what I am looking for out of life. To be able to be with my family & friends and not have to worry about the next event with them. Will I be able to attend, to join in? To be a supportive friend and mate to my best friend & husband of over 41 yrs, To be able to be a constant member to what ever is going on with my kids and grand kids, to have the energy and pain “LESS” times to work on my art, and to have time that I can spend with my friend’s who are my tribe and also help keep my saddle on straight. Even when I am not in it. To have the stamina and energy to continue my work as a CASA (advocating for children through the court system where they have little to no voice). Is that asking for too much? I was doing all of this and more while at the highest dosage of my opiate medications, and I have been doing this at my lowest dosage. That was up until a year ago just this month.
Then the boom of illogic was lowered again.
This time in the form of a long awaited road trip. We’ve not had the gift to travel because of my health. I won’t even go there in all that it implies. Suffice it to say that for me to travel brings on a host of issues. Even in my best of times.
Well it was too convincing. We told ourselves that after 4 good years a road trip was most doable.
Seven hours later and arriving at our coastal destination everything seemed fine despite. The expected sore body and a neck that could not look from one side to the next. Carefully through the next week we went doing as much as we wanted within guidelines that kept me moving. No horseback riding, no dune buggy rides, no hikes along the rocky coast line. That’s okay. I took art supplies, my camera, our kitty Truman who was the beau of the resort. Yes, our cat road trips with us. I was a happy and free camper. Okay.. not so much camping really in a lovely suite. But I was happy. And I was feeling free.
Then 7 to 8 hours back home. I drove some of the way hoping it would help ward off some of the muscle stiffness that had worked its way back out during the restful week on the beach.
Back home exhausted and in the need to recover from our vacation. Who does not need to do the same? I recall days pre-CP (chronic pain) when returning from vacations it always took me a couple days to recover from being on holiday. I recall conversations through out the years with my peeps about such phenomena. Serious fatigue post vacation.
So the first vague feelings of being tired were natural. It was just as natural for me as part of my illness, just as pain comes with my health conditions so doe chronic fatigue. To talk about both out loud runs the risk of being doubly labeled.
But so goes the stigma of the illness of chronic pain. And fatigue.
For two days I listened to my body, I altered my routine as I normally do when symptoms flare their ugly heads. Then by the third day I knew. I was hit over the side of head, up each sides of my neck, slugged in my Left shoulder & arm, and tiny fierce pinches in my mid back, all of which left me out of breath and flat out of my saddle.
The logical reason for why this was happening was my road trip. This is not so logical sounding to most. I get it. But this is part of what a chronic illness is like. Major changes from the norm.
Fast forward one year later. I am no better. I am maybe even in worse shape concerning the spine disease. It’s progressive. That is logical.
What is not logical is that I am still in so much pain it’s having a deep effect on my life. I am powerless over my pain, over my body, over my disease. I admit it. I understand logic has no place here. I logically have put in place every life style change I could make, every skill I’ve learned to use to cope, every distraction I’ve developed over time that helps minimize the exposure of the chronicity of my pain to my emotions. All to no avail. I am now becoming pissed. I don’t get this way often. I am normally a sunny person, one who sees the positive.
But what I continue to find extremely illogical is there are treatments including medications that can help bring me back to some sense of a productive day. That can minimize my pain enough that focusing on something, anything else is possible. It’s part of my tool belt. Distractions. But there has to be a place in my brain where I can set aside the pain, at least for awhile. To have the ability to focus on something else means the pain has to be put in the back saddle. Because I know it will not completely go away. It hasn’t for 27 yrs. I have been watching in slow fascination this time the progression of my doom. As heartily as I fight this deep deadening attack on my norm the unmanaged pain fights with even more venom to take all that I’ve known away.
Medicine is supposed to work on logic. Really? I find this to be one of the most ironic, illogic, personal happenings I’ve ever come to have such an influence on myself.
It’s illogical, it’s ironic and it’s not who I am.
This altered side of me.