Neuropathy - A Personal Account

Today's post comes from neuropathyawareness.blogspot.com (see link below) a colleague neuropathy blog and is one person's personal story. This person has no visible connection to HIV but her story will be familiar to very many people suffering from neuropathy. It's not easy taking opioids to try to control the pain: the opioids themselves can have unpleasant side effects and can be addictive and besides that, as this lady says, they still don't remove the pain 100%. The problem is, when all else has failed, modern medicine can offer very few alternatives for reducing the pain.

Living Life with Peripheral Neuropathy

written by Michelle Cornell Monroe, Support for Neuropathy member

Living life with peripheral neuropathy has been a challenge for sure! I never would of thought that my life would revolve around being in chronic pain 24/7. One day I was in great health and the next it was all taken away from me in Jan 2001. Before all this I had never heard of peripheral neuropathy so when I was told that this was my diagnosis and it was permanent with no cure I just about lost it! I remember thinking how can no cure be available and no specific medicine for neuropathy be available? When my neuropathy symptoms first started it came on strong and on a pain scale the pain was a 10 and still is, but controlled with medications/narcotics. So now my life also revolves around being on heavy narcotics and this is someone who never took anything besides a asprin before all this! Even with being on heavy narcotics I still have pain and some days are very bad! I take medicine that is given to cancer patients and still can't get pain control on some days. That is just crazy to me and something has to be changed! We need help spreading the word about PN so a cure can be found. No one should have to live their life in chronic pain!

No one can understand what it's like to live like this unless they have it personally. It takes over your mind and controls everything you do from spending time with family or friends. It follows you everywhere and is always a constant reminder that you have PN. As bad as my life can be with having PN I have found its the little things that can make me happy. Little things like the smell of a flower or watching a new flower grow, enjoying my morning coffee, my fragrant candles, a new recipe etc and best of all being a great mom! I have had time over the years to accept this is the new me and its how it is. Of course I have days that I get depressed, but I try and think tomorrow will be a better day! I'm so glad to have the support from the group called Support for Neuropathy that I joined on facebook. For about 9 out of the 11 years of having PN I had no support and it was very lonely. I have meet many caring and awesome friends in my support group and I'm very thankful to have them all!!

http://neuropathyawareness.blogspot.com/2011/11/living-life-with-peripheral-neuropathy.html