Sheila's Tips for Coping
Here are the first 3 from her Empowerment through behavior modification post.
(Please note,each case presents specific to the individual patient and the nerves affected. These details are specific to my own experience. What worked for me, may not work for the next patient.)
 Arachnoiditis often renders the survivor dependent on others for daily support and assistance. Still there are some things that Survivors can do to maintain some independence and personal power over the events of the day. Due to a lack of guidance and companionship during this difficult journey, I kept a journal of my days to document my fears, anger, pain, and hope. Inadvertently, it became a record of pain levels, triggers, and symptom progression. Over time I began to identify things that I needed to do differently.
- I learned to get horizontal every three hours even if I didn’t feel incapacitated at that specific moment. Arachnoiditis scarring has impaired the CSF rotation in my spine. This means that the fluid gets trapped in my lumbar spine and I do not have enough fluid around my brain. The resulting symptoms are similar to a spinal fluid leak. I keep a waterproof picnic blanket with me any time I am away from home. I put it on a bench, on the ground, push two chairs together, or even on an office floor in order to assure that I do not miss this important horizontal time. (It took some time to get used to doing this. It still feels conspicuous and I sometimes hesitate but, ultimately I know it is what I need to do.)
- Stay hydrated. My neurosurgeon, who was unable to treat this condition, informed me that Gatorade helps to restore the fluids necessary to restore CSF levels. Although, at first I was somewhat offended in my defensive frame of mind, it eventually became obvious (through trial and error) that there was indeed some truth in what he had said. I don’t really like Gatorade, but, I do now keep it in stock for use on exceptionally “active” days. Because of the artificial nature of Gatorade, I am also looking into natural options. Some forms of coconut water that are now on the market indicate that they contain electrolytes with restorative properties. I am doing some trial replacements with those.
- I learned not to waste my vertical time on waiting, hovering, or other unnecessary task just because it was the “social norm” to do so.
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