This is an excerpt from a longer conversation with my cousin who’s been living with chronic pain and fibromyalgia. This excerpt was of particular significance because it was answering an unasked question which was hidden “between the lines” regarding hopelessness. If one is faced with 20 years of chronic pain, immobility, mood swings, etc. AND loss of hope what might their next stop be named?
Or is it the end of the line?
Hello T. M. . . .,
I’m worried about you. You wrote a great post on hopelessness, are you feeling hopeless?
How can I help….I’m a good listener. You’ve poured your heart out onto the pages, you’ve been through a lot in your life and every one of those memories makes changes in the way our central nervous system functions and in the way the brain functions.
We (all of us who are chronically ill) put a lot of hope in those little pills. Those pills are able to aid you in functioning but can’t fix what has been broken. But, there is HOPE! The hope is within you and, with the help of another human being (not another pill), you can find a sense of peace and understanding. Then we come to acceptance…..well, that’ll be a whole ‘nother blog.
I made a promise to myself when I started this blog that I would be honest in my writing without sounding pitiful. I believe honesty transcends our diversity and therefore many can relate. The problem I have is that I suffer from untreatable maladies (brain, heart) and have recently been plagued by severe shooting pain in my lower and upper right side of my back, sciatica on my left leg, and most recently pain and weakness in my lower right leg. I was compromised with untreatable long-term illness, but then add these perpetual pains and immobility (I’ve been in pain every single day for 10 months): I take a cocktail of pain relief and muscle relaxants which work somewhat, but gastric bypass changes everything. Pardon my expression, but I feel like I’m all fucked up, none of my doctors seem to have the answers, and I am virtually homebound and use a small 3-wheeled walker to move around the house (which I’ll give to Rick when I’m finished with it). It’s almost impossible to have hope when you take stock of your life and all you see is lunacy, suffocation or heart attack, and constant and crippling pain. I’ve asked myself, “Am I really alive? Is this 24 hour ticktock simply doing time for a crime I didn’t commit? The only thing I look forward to is writing my blog. If only I could discover pain relief.
I’m so sorry about your back pain….I have been through terrible sciatic pain and understand completely what you’re describing. It IS hard to have hope! What you’re describing is what everyone with fibro describes……many lose hope. Without hope, you have nothing. I was at that point at one time, too and made a plan to commit suicide. All seemed hopeless and I didn’t want to live a life of pain. i threw myself into research and coming to understand what was happening inside of me. I’m still coming to understand what’s happening…..researchers are still trying to come to understand what’s happening. For 40 years, I went to the doctor, described my problem….he did tests, which all came back as normal. As long as the tests came back normal, there wasn’t a real problem. Thousands of people have gone through this same thing….test after test and all is normal. I was turned away and humiliated by a few specialists who didn’t believe me….no one would believe me. The doctors were trained in medical school that when someone like me comes in….to disregard the complaints….it’s all in her head and she’s making it up to get attention. Talk about losing hope!!!!!
Dr. Oz actually did a show on this a few months back and he admitted this is how the medical field has been trained …..to not take seriously any pain that can’t be diagnosed on a test. And, he admitted that he felt this way, too…..until just 2 years ago. Now, he has come to understand more of what’s actually going on inside of us. I am not alone.
Facebook has been like a miracle for me because I have found all of these other people just like me who have suffered for forty years and discounted, too. There are thousands and thousands of people all over the world who are suffering. The medical profession doesn’t know what to do with things they can’t see on a test!! You have terrible pain in your back…..surely they must be able to see this pain on a scan. But, no….they won’t see it unless you have a herniated disc, that they can see. That, they can do something about because they can see it.
I used to volunteer at The National Runaway Switchboard as a “liner” (the person who answers the call. I decided to continue until my problems surpassed those of the caller. Well, I stopped when Rick got sick and haven’t been back since. I could deal with the long-term illnesses if I could just shake the pain.
I have learned so much. I went off on my own and spent a fortune on alternative therapy and a Fibro Specialist that wasn’t covered on my insurance plan. I had to drive 12 hours one way to get to see him….talk about desperate!! But, he helped me gain a semblance of a life back. It was worth every penny.
What I’m trying to say is this….the doctors don’t have all the answers. In fact, they don’t have many of the answers. There is much more you can do to help alleviate the pain.
One thing I suggest is seeing a Pain Specialist. Jeff has been suffering with debilitating sciatic pain for some time. He couldn’t walk without his walker. He was losing hope.
He went to see the pain specialist who injected the spine…….because the injections helped somewhat, the doctor knew that a more radical treatment would work. He did the treatment on his sciatic nerve and it was a MIRACLE. He was able to walk, to stand up straight and to begin to enjoy life again.
Just the value of having one other person understand what you’re going through and to be able to relate with compassion and empathy is very healing. I’ve seen it again and again as I talk to people. They all say it . . . empathy, simple compassion for another’s suffering.