Neuropathy is not discriminatory and anybody can fall victim to the problems it brings and even though this blog is aimed at neuropathy patients with HIV, everybody's story is relevant to us. Similarly, although someone's experience may appear here, that doesn't mean to say that they also have HIV and that is why personal posts will always remain anonymous unless the subscriber gives express permission otherwise.
This is Mary's story (source link not shown)and it shows how to take practical steps to maintain a positive attitude.
There is still life with neuropathy
I first became aware of “unusual feelings” in 2003 when I moved my toes and it felt like something was blocking them. An EMG showed a demylinating polyneuropathy. After several tests, I was told to wait six months. I went on the internet, found the Neuropathy Association’s website, and joined.
On the web site I read about neuropathy, found a doctor who dealt with neuropathy, and read about others people’s challenges with neuropathy.
My symptoms started getting worse, the tingling and numbness was progressing up my legs. When I walked, I felt Like I was walking on rocks, stones, glass, and I was getting this tight feeling around my legs and feet.
I felt depressed that my life was changing and I could no longer live the way I was used to. Simple things like watching TV or lying in bed were always accompanied by the pain and discomforts of peripheral neuropathy. I could not get comfortable.
At work, as a pre-k teacher, I was given two teacher aides in my room to do the running around. If I wanted to shop longer than a quick stop, I had to accept using the scooter. When we traveled by air, I had to use the wheel chair in the airport. I was not comfortable with any of this.
The best thing I did was join a support group. There I met people who were going through the same things I was and understood.In time I was able to start a support group in the area where I live. Being a support group leader is very rewarding. When I talk to people who are as confused and scared as I was, I help myself.
I know I can’t live my life the same way I did. With the help of my husband, (who is a great support system on his own), my friends, and therapy I have been able to let go of my old self and become comfortable with the new me. I still get frustrated living with neuropathy but I know that even though it is difficult, there is life with peripheral neuropathy.
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