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Dave R.

HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


I'm Positive, I'm on Treatment, I'm Undetectable, So Get Off My Case!
September 2, 2014

Okay, look out folks, senior citizen out of control and about to rant!

To quote any queen on the Drag Race, I'm sick of being treated as a pariah (which the Oxford English Dictionary defines as: "a term of reproach or abuse: a worthless or contemptible person; a wretch, a cur."), officially!

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When Push Comes to Shove ... How Far Would You Go to Eradicate HIV?
June 23, 2014

It always seems pretty weak to begin an article with a disclaimer; as if you don't really believe in what you're writing. Well in this case, I genuinely don't know what to believe. My instinct says that governments who force people to do things are always a bad thing but I can't find a reasonable argument to defeat the premise of this post. Maybe readers can give me something more than a moral objection to the question posed here; maybe a moral objection is enough but the point is, I think we should at least talk about it.

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The Painful Reality of Neuropathy
May 14, 2014

Occasionally, everybody tingles, or has numb fingers or toes, or feels the nerve at the back of their leg twitch to give them shooting pain. They may be woken by restless legs that shudder without reason, or recoil if they touch something too hot or too cold, or conclude they've got a trapped nerve somewhere on their bodies. These are all perfectly normal but nothing prepares you for the effects of your nervous system going into major short-circuit mode!

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The Bug Chaser's Tale: An Interview
March 3, 2014

I've been exchanging emails with Jamie for about 9 months now; at first not for any other reason than he has neuropathy and has got it bad. He has followed the same frustrating path that many people do when faced with burning feet and loss of sensation in toes. Each treatment is equally as ineffective as the last and like many of us he has ended up on opiates which have finally given him some relief.

However, this story has nothing to do with neuropathy and everything to do with the fact that he was a bug chaser and having chased the bug, has tracked it down and it chases him these days.

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Please Don't Leave Me Because I Need You: An HIV Take on Separation Anxiety
January 22, 2014

My last article was about people who find it very difficult to commit to others; no matter how much they care about them, they just can't get over that feeling that they're going to become someone's property and lose their sense of self. Those people rarely open up to the possibilities of a relationship.

However, there's another side to that same coin and that's the fear of being abandoned, neglected; left in the lurch and not being loved. It's called separation anxiety and it's equally painful and equally destructive to healthy relationships.

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Please Don't Ask Me to Say I Love You: An HIV Take on Commitment Phobia
January 14, 2014

If you're living with HIV, you've already been through stuff; that's a given. You may have seen friends or lovers dying, or being seriously ill and recovering by the skin of their teeth to live on bearing the scars. You may also have had your own brushes with disaster, leading to a well-justified and experience-based fear of the unknown and the future. If you're lucky, you've found a partner along the way to share shit with; someone to lift you up when you're down, just as you do to them. If you're not so lucky, you may be living alone, hoping that a new relationship may turn up; or just getting along, grabbing moments when you can and getting through, happy enough but not looking for wedding bells on the horizon.

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Nelson Mandela: Great Is Too Small a Word
December 6, 2013

While most modern leaders base their careers on the Machiavellian quote that "It is better to be feared than loved," a handful of people throughout history prove by their lives and work that that doesn't necessarily have to be true. Gandhi, Martin Luther King, Mother Theresa are names that spring to mind but history may judge Nelson Mandela to be possibly the greatest of them all. His ability to unite a land on the edge of chaos and riddled with partisan hatred and division, after 27 years of imprisonment and personal humiliation, is nothing short of miraculous.

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The Loneliness of the Long-Distance HIVer
December 1, 2013

Sometimes the weather is so bad you're forced to stay in and watch people hurrying by, heads down, or shielded by umbrellas, as if they deliberately don't want to catch your eye. The rain spits relentlessly onto the windowpane and although you're warm and dry, you long to be wet to the skin and hurrying with them, as companions to wherever their destination may be. Those are the times when loneliness cuts you off from the world and exaggerates your belief that every man is an island after all.

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Anal Cancer: The Point of No Return
November 8, 2013

After almost six weeks of waiting and endless tests and appointments, John was finally admitted to the cancer hospital on 9th May, 2013. The following day he was operated on and his body changed forever. The anal tumour was successfully removed and his intestine and colon were re-routed to an opening on the front of his abdomen. There a colostomy bag could be fitted to take over waste removal functions. The anus was temporarily closed off and would play no further part in his daily bodily functions.

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Anal Cancer: How Much Can One Man Take?
November 4, 2013

On the 10th July, John sent me a mail:

"I had to sleep for a few hours; I was so tired. I'm going to have to have between 28 and 31 radiotherapy sessions and during the same period, chemotherapy in tablet form. The oncologist is hopeful of a complete remission because the cancer hasn't spread to the lymph glands. ... One thing is sure, it's not the same cancer as the last time and isn't a spreading of the bladder cancer. He thinks I should be done with the treatment at the end of September. ... This coming Friday at 10:00, an explanation meeting; 10:30 blood tests; 11:00 they'll draw the tattoos of where they're going to radiate me; 12:00 a CT-scan. Monday, 09:00 an infusion of chemotherapy; 11:00 radiotherapy. The party's about to really begin!"

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

BLOG:
HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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