Best Case/Worst Case

“If you open yourself to loss,
you are at one with loss
and you can accept it completely.”

–Chapter 23, Tao Te Ching

It was a rough weekend and this is the first day my hands have had little enough pain to type since my last entry. All the little jobs I did all week caught up to me when I was at the post office on Friday. The fibro/neuropathy exhaustion always hits suddenly (people have described it as strings being cut to a marionette) and this time was no exception. I was standing in line to mail out my package and the whole world went gray and the package in my arms suddenly had Jupiter's gravity. I mailed it out and shambled to my car. I managed to drive home, but my arms were aching, back in spasms, and my entire body leaden. I spent most of Friday night and Saturday in bed.

Being bedridden always makes me gloomy, but looking outside at the sunny but cool fall day Saturday made me genuinely sad. These are the days that I love most. I dislike the intensity of the summer sun. But bright autumn days are the days that I want to go hiking, biking, and adventuring in general. Instead, I was in bed while spasms consumed my body. I did some reading until the book felt too heavy. I slept a lot. I cried a little. When I felt well enough I got up to play Dead Island, feeling more like a zombie myself. By Sunday morning I was feeling good enough to go see a movie with a friend.

I have to relearn all my limitations. When I was on MMJ I could do a lot more. I could hike, I could walk for an hour, I could dance regularly, and I had the strength and clarity to undertake focused tasks like the  apartment search and art classes. Going off the MMJ was harder than I can easily explain. Not only is the pain back, but it seems worse. I am not sure if it actually is worse or if that is just a matter of perception-- the pain was so dulled by MMJ that in comparison the pain without MMJ seems intolerable.

I am taking Flexeril now and I have noticed it helps with sleep and a lot of the body tension. But the pain, exhaustion, and weakness are still present. It makes me woozy though, and my fibro fog seems even cloudier. But I will take it for a few weeks and see how it settles out. It has been far kinder than the Lyrica has, so far.

I am still trying to cope with the diagnosis of peripheral neuropathy in addition to fibromyalgia. Fibromyalgia I handled by knowing it was not a degenerative condition. It sucks, yea, it hurts and can be disabling... but it wasn't going to get any worse and that was a comfort. But the peripheral neuropathy has been getting worse. I know what the progression of symptoms will be if it continues to get worse and I know factually what it might mean for my future. But I don't know how to digest that into my values system or how to adjust my goals for it. I hope discussing it with my pain counselor will help. But degenerative nerve problems aren't just pain, it means a progressive loss of functionality. I can think about it in scientific terms, but trying to understand what that means for making choices, goals, and plans is beyond me at this point.

But even the fibro specialist, Dr. Swartz, didn't know for certain what is causing my peripheral neuropathy. There are many causes of peripheral neuropathy. I don't even know for certain that it will continue to get worse. Maybe I've reached the worst that it will get. I certainly hope so. But it has been degenerative so far, since 2011 it has gotten worse steadily. So I feel that unless I find an answer, a cure, a treatment to stop this trend before the nerves are too badly damaged, then I have only the worst to look forward to:

"Changes in movement may include muscle weakness, lack of muscle control, and muscle atrophy. Autonomic changes may include blurred vision, decreased or absent sweating (anhidrosis), dizziness or fainting when standing (orthostatic hypotension), nausea or vomiting after meals, urinary incontinence, and impotence (in males).

If the cell bodies of the damaged nerves have been destroyed, functional loss (sensory loss or muscle weakness) may become permanent. Complications are commonly associated with diabetic, amyloid, and hereditary sensory neuropathies. Other neuropathies may result in heightening of the arch of the foot (pes cavus), backward and lateral curvature of the spine (kyphoscoliosis), and loss of hair or ulceration in the affected area. X-ray examination may reveal loss of bone density, pathologic fractures, or joint disease (neuropathic arthropathy).

In some cases, partial or complete loss of movement, function, or sensation may result in disability. Nerve pain may be extremely uncomfortable and persist for a prolonged period. In some cases, the neuropathy may cause life-threatening symptoms such as rapid heartbeats (arrhythmias) or difficulty in breathing or swallowing."

-- http://www.mdguidelines.com/peripheral-neuropathy

I am reading and working on "Living Beyond Your Pain," a workbook for coping with chronic pain. It is about avoiding both denial and negative mental patterns and living in a manner authentic to your values. But pain is a little different than degeneration and disability. I'm just not sure how to handle this. I thought I wouldn't be looking at this sort of physical degeneration until I was well into my 60s.

The possibility that I may need adult diapers in my 40s never occurred to me.

I know, it all sounds whiny, self-pitying and defeatist... but I've always been taught to prepare for the worst and hope for the best.

So part of me hopes that I find an answer to stop this or reverse the damage OR that it just stops getting worse. I will do what I can to find answers and do supportive therapies. But part of me is going to have to work on accepting that the worst might happen-- that I may not find answers and that the symptoms could get worse.

Mostly, I will work on living my life, accepting that the pain is here and may be unavoidable. I will work to live my life to its fullest given the hand dealt to me and to make reasonable goals and pursue a life that would make me proud instead of living in fear of the pain or the future.

I wish I was three people-- it would make this easier. *laugh*