Tuesday, 26 June 2018

How Do You Prove To The Skeptics, That You're A Genuine Nerve Pain Patient?

Today's post from themighty.com (see link below) may well be your story as a neuropathy patient - granted with different details and circumstances but covering experiences that may be universal to nerve damage patients. Chronic pain conditions bring their own special burdens of guilt with them. Partly because you may not 'look' sick and partly because...well...how do you describe neuropathic pain symptoms to people who've never felt them? There seems to be a permanent burden of proof attached and even your doctors may be skeptical in the beginning. You know that the symptoms are sometimes excruciating yet you feel the need to constantly convince people and prove your claims. That's why this article addresses a vital issue - the accompanying mental baggage that affects you every day requires a sympathetic bedside manner from those around you. Well worth a read because acceptance that you're not a fraud is much more difficult than it seems.

You Deserve to Talk About Your Health Without Feeling Like a Burden
Isabel Diaz Contributor •
April 26, 2017

Why are we often so afraid to express our emotions to others? Most of us were taught from a young age to be “brave.” “Don’t cry!” “Do not show anyone how you feel… be strong!” As the years pass, we hear, “Just get over it” or “Put on your big girl panties,” “Suck it up.” So on and so on…

We meet many partners and friends in our lifetime, and trust issues usually come into play as we open up to someone and get hurt. We close up a little more each time.

I have often thought I am my own best friend. It is safer that way, but it is lonely and not very healthy. So, who is my support system? Who can I trust with all these bottled-up emotions?

I am fortunate to have close friends who understand me. They “get me,” and I understand them.

My life changed completely when I was diagnosed with fibromyalgia and peripheral neuropathy almost four years ago. I am also a caregiver to my mother who has chronic vertigo. My work situation changed, my social life changed, my personal friendships changed. I was not able to attend a lot of get togethers or travel. I was not able to attend the multiple charity walks I used to go to every year.

I became more reclusive with each passing day and did not talk about what I was feeling, what my physical capabilities were and how my life was in general since the diagnosis. Most people could not even tell I was in so much pain. I became more and more depressed and had bouts of anxiety, which can come with any illness, especially ones that continue to surprise you every day with new issues.

I learned along my journey to advocate for this disease. I am a proud committee member for the Fibromyalgia Care Society of America, which helps so many. We have walks every year and other activities to bring awareness. I have learned it is OK to talk about how I am feeling without feeling like I am a burden or annoying.

My circle of friends are close. I always say I prefer four quarters over a hundred pennies. We do not have to speak every day to know how much we value each other. My friends have become family, and I feel blessed every day.

I try to maintain a healthy and positive outlook in everything I do. I’m grateful.

My biggest passion is writing in my journal. It flows naturally most times, and I feel so much better afterwards. I sometimes look back and see how I have overcome mountains in some areas and made small strides in others.

I am stronger mentally and am determined to have the healthiest life possible considering the circumstances. I never knew how strong I was until it was my only choice.

I have made strides to eat healthier, which includes a mostly gluten-free lifestyle, watching my portions, and more vegetables and fruits. The crock pot has eased a lot of time and pain. Exercise consists of mostly stretching, walking, and some strength training I learned in physical therapy. But I have to pace myself and can become exhausted easily.

I have learned to crochet, meditation and how to say “no.” Calendars and daily reminders.

The simplest things in life make me happy because I do not take anything for granted.


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