April 11, 2012
In 1931, the French medical missionary Dr. Albert Schweitzer wrote: "Pain is a more terrible lord of mankind than even death itself."
If you have headaches, or toothaches, most people will be able to identify with you and sympathise. They can't feel your pain at that moment but they've had headaches and toothaches before, so can imagine exactly how you're feeling. Similarly, if you've fallen and broken bones, or cut yourself and are bleeding, most people will be able to empathise with you.
With neuropathy, it's different. Despite the millions of neuropathy sufferers across the world, most people can't hang a mental label on what you're telling them and are therefore immediately distanced from your discomfort. They feel they should be sympathetic and generally do their best but without a reference from their own pain experience, they don't really understand why you're making so much fuss. Extend that scenario over weeks and months and people become disconnected and lose both patience and goodwill. It's not their fault it's human nature; especially when so little is publicly known about the condition.
Authors, scientists, doctors, journalists and bloggers can write about neuropathy until they're blue in the face but there's no substitute for hearing people tell their own stories. This post is therefore given over to some of the men and women with both HIV and Neuropathy who have opened their hearts on forums and in blogs across the Net. There are many, many more!
Here their anonymity is protected but if anyone doubts the veracity of any of the experiences, the original links can be made available. Similarly, if you recognise your own words and wish them removed, I'm sure that can be arranged but I have a feeling that you already understand that sharing your story is a powerful tool in increasing awareness of what having neuropathy actually means.
"That September I returned to work from a week long vacation cruise. As I dressed for work, the first morning back, my feet hurt a little. I chalked it up to wearing dress shoes after a week of flip-flops and going barefoot. But the pain steadily increased along with the sensation of my feet being asleep and I was not quite able to wake up from the numbness. After a few weeks, the pain became so severe I could hardly walk. I would take my shoes off at work, but relief was fleeting, if not at all. I also became easily fatigued. I thought the cause could be a reaction to an HIV medication I had been taking for a relatively brief time. I went to see my HIV doctor. By then, I was in worse shape and in the most pain which extended through the first months of 1999. During the 1998 Christmas season and beyond, I could do little more than lay on the couch. I missed a lot of work to the point of not being able to work at all after the first of 1999. Today my lifestyle is much different than it was just a few short years ago. I was forced to take disability retirement from my job I loved and enjoyed in August 1999 at just 47 years of age. However, I have learned that human beings are very resilient and can adapt to almost anything through a positive outlook and in appreciation of the fact there are always people much worse off than I am.
Of the myriad adjustments I have had to make, the one that looms largest is the loss of independence, particularly the ability to drive. It is frustrating to not be able to hop in the car and go to the grocery store, pick up prescriptions or drop in on family and friends. But I feel blessed to have the luxury of family and close friends who provide a physical and emotional support system for me.
I have also learned that little things can make a big difference. The "prophetic" cane helps me with balance when walking a distance. Just a light touch or hold on a stairwell handrail or a shower grab bar helps me with balance than you might think. Being able to see the floor when pulling off a T-shirt or towel drying your hair surprisingly helps my balance equilibrium.
Overall, I think the best coping medicine is to maintain a positive perspective and not fall victim to a self-pity party. We all must accept our lot in life and learn to live with it."
"Peripheral Neuropathy pain seems more like imaginary miniscule metal barbs being pulled out of the skin. It's like having rolls of barbed wire coiled up under the skin. It sounds like a nightmare, and it is. When the pain is at its greatest sleep is impossible and it takes all the energy one can muster to get out of bed, stand and sit when necessary. Nothing seems to matter, but getting rid of the pain."
It's important to state here that although neuropathy is generally a progressive condition, by no means everybody suffers to the same extent as the people above. There are many different causes and many different forms and therefore also many different degrees of experience. Unfortunately, as people live longer with HIV, these sorts of stories will inevitably more frequently emerge in the community.
Finally, the link below will tell you how we really feel when questioned about our condition. Not that we're being dishonest when we just say, 'Okay', or 'Not too bad'; it's just often easier that way. After all, you don't really want to listen to a twenty minute moan do you? Just as long as you understand that neuropathy is really difficult to describe and impossible to ignore. We're not play-acting for sympathy, or trying to morally blackmail you into feeling obliged to help but just a simple acceptance that we're not feeling great today would be perfect, thank you. If you're feeling bad too, be honest and tell us and we'll return the favour and give you the stage. Nobody should try to BS anybody here!
More Information: A Letter with Genuine Relevance to Neuropathy Sufferers
Further general information can be found here:
This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.