The Ark

Whatever floats your boat...

Clutter is becoming a metaphor for my life. Not just the clutter of papers, unopened mail, boxes from Amazon, and electronic junk I see, but the clutter in my head. That's the worst clutter, the stuff I wake up with that is a part of what keeps me from moving forward. In fact, moving forward has become a meaningless phrase to me. That's partly what chronic pain does to you. I have literally been to between 30 to 50 doctors in the past 20 years in an effort to get pain relief. They are so afraid of prescribing pain medications for whatever reason, they gave me nothing. I have tried anti-depressants, which sometimes help with pain, but my body didn't tolerate the side effects. There is nothing to treat the demyelination in my spinal cord, (transverse myelitis), so I take Tylenol, which does next to nothing. The pain and numbness is similar to peripheral neuropathy, which some diabetics get. (I am not diabetic)

Well, I don't know where I'm going with this blog. Sometimes it helps a little to put things in writing. Believe it or not, I am a positive person. If I weren't, well, I've got a ton of pills, but I don't want to go there. I'm still hoping for stem cell research, if I can hold out.

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Comment by JustAnotherUserName on August 18, 2009 at 8:10pm
I know you are a positive person because everything you post on my vids and blogs (and everyone else's) is always lovely and supportive. Here in la-la land (Topanga, also land of the aging hippies) pot and accupuncture are the drugs of choice :-)

My husband tells me that if I eliminate the clutter in my home, I will eliminate the clutter in my head. I am a clutter-person; he is not. I prefer the running-around-chasing-my-own-tail method, so I guess the clutter stays...!
Comment by photo2010 on August 18, 2009 at 9:45pm
Ruth, thank you for your kind words. I would love to clear out all the clutter, but that is not a possibility right now. I would also try pot for the pain if it were legal here, and may try accupuncture if I can get someone to come to my home.

Thanks for understanding me. :)
Comment by photo2010 on August 19, 2009 at 11:56am
It has been shown that painkillers don't cause addiction in ppl who are taking them for pain relief, unlike those who take them for recreational purposes. And even if they do cause some dependence, my opinion is WHO CARES! Dependence vs no quality of life, I'll choose dependence. You are extremely lucky to have a doctor who is willing to treat your pain. I would sign the paper happily if my doctor offered it.
Comment by photo2010 on August 19, 2009 at 9:30pm
Sara, I have tried Cymbalta and Lyrica, the side effects made me very ill so I had to stop. I have had years of physical therapy with diminishing returns. Many of the other things you mention such as nerve blocks have never been offered to me. When I asked for Neurontin my neurologist just said no. Am I supposed to be the expert in the field to tell the doctor what to do for me? Apparently I am. I also have had nobody else helping me. I have been to some of the top hospitals in two states. That does not guarantee medical competency however. Now I am too fatigued to go anywhere. If i do someday, I will bring a list of suggestions with me including some of yours. Thank you. :)
Comment by photo2010 on August 19, 2009 at 9:47pm
Suze, if I were a doctor with a patient in severe pain, I would try everything I could to relieve the pain and maybe allow some healing. I don't get it either. Regading clutter, glad I'm not alone, lol.
Comment by photo2010 on August 20, 2009 at 7:58pm
Yes, Candy and I have 'spoken' many times. She has been through a lot. I'm also on boards with people who have the same dx as me. It does help to share with those with the same thing. Sometimes it helps to just vent, as many of us do about various topics. One never knows where the answer you're looking for might come from. Of course, there is always a risk in putting personal stuff 'out there', but I've found it's usually worth it.
I fear my clutter is beyond the clutter stage..
Comment by NatureJunkie on August 20, 2009 at 11:21pm
Clutter becomes a metaphor for my life sometimes too. When it does, I see it as a sign that I feel my life is out of my control. Of course, the feeling of being in control is just an illusion--no one has control over life. But that illusion is a pretty comforting thing. So from time to time, I take a time-out from everything else, even work if necessary, and I organize the clutter. It helps me get perspective so I can move forward again.

But I have had minor illnesses (nothing like what you've experienced) that have kept me laid too low to keep the clutter under control. It takes a toll on my outlook in way that I think makes it a little harder to get well.
Comment by JustDee on August 21, 2009 at 9:48am
I have blogged about my home being a picture of what goes on in my head so I totally get what you are saying. It does feel like that when I am looking around that my inner feelings have exploded all over the place.. it is interesting also that I too suffer from chronic pain, although I am not sure what is causing the pain, maybe arthritis, maybe something else, maybe one of these days I will be able to get it diagnosed. In the mean time, what I have found that helps the most is being in a pool.

I joined a local gym that has a pool and I try to go there at least 5 times a week and sometimes I swim, but mostly I just relax or walk across the pool (in the water, not on the water...LOL). Just being in the water soothes my aches. After a bit I go and sit in the jacuzzi for about a half hour. The result is at least a couple of hours of freedom from the hurting. My local gym charges just $19 dollars to join and $19 a month.. for me, it is well worth the 20 bucks. A lot of gyms now have specials.. maybe if you can find one by you and give it a try. A lot of gyms have trial periods.. of course you will have to make sure they have a pool first....Good luck with your clutter and your pain.
Comment by photo2010 on August 21, 2009 at 6:24pm
Dee, I'm sorry you have chronic pain also. Mine is different in that I have numbness in my feet and hands in addition to pain. I have a spinal cord injury and no discernible reflexes in my legs. Getting from bedroom to bathroom is a daunting task, much less going out. I use a power wheelchair to go out, and have to hire a van for $120 to transport me in my chair. I am going to try and arrange for more affordable transport. Getting in and out of a pool would mean I would have to be lowered in and out. I wish I could do it, but right now, simple daily tasks exhaust me completely.
I am glad the pool helps you and hope you get an answer to what's causing your pain.

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