How Does A Carer Cope

Today's post from satonmybutt.wordpress.com (see link below) is a much-needed look at chronic illness from the viewpoint of the carer. In this case, it's the patient who generously acknowledges the debt he has to his partner and fully realises that taking carers for granted is a big mistake. Of course, patients who are in chronic and unrelenting pain are entitled to feel sorry for themselves at times but they can forget the effect their illness is having on friends, family and carers. It doesn't do any harm to remind ourselves every now and then that we're not the only victims here.

My side 
April 24, 2015 By SatonmyButt

I asked my wife to write a post from her point of view and it was posted yesterday, it seems to have been well received because of its honesty because people who are unwell or disabled never fully understand how it feels to be the carer.

One of the parts that I enjoyed reading was how it feels for her to hear me saying I’m in pain, from my side I have sometimes wondered about the response or lack of response I get from saying it. I’m obviously in pain every hour of every day and I handle a level of about 5, but on days when the pain soars I do tend to vocalise that and its hard when there is no comforting response from my wife.
As she said in her blog, first she has heard it so many times that she has become numb to hearing it, secondly as my wife she finds it hard to know her husband is in constant pain and so as a defence mechanism she uses that numbness to protect herself from that thought.
The problem is that when we are in pain, we are also more sensitive and so its upsetting. I’m not sure what I actually need from my wife when I tell her that I’m in pain, I do know that I need to vocalise because it somehow helps?

It’s extremely hard to explain to your wife/husband what it’s like to live with chronic pain, its hard to explain to anyone! I could be laid on the settee with my wife beside me, my miniature dachshund asleep under the blanket and my two daughters in the room and yet I can still feel like I’m alone, I’m obviously not talking about physically alone but a loneliness that is felt because I’m in pain and its constant, I am going through a whole multitude of feelings and this is constant it’s not a momentary pain that I need help through its forever.

About eight years ago I was changing the water bowl in one of my scorpion enclosures, this one was a rescue and so we had a rough idea of what type it was but we couldn’t be 100% sure, so it was ID’d as an Arizona bark scorpion which is still fatal if you have an underdeveloped immune system. I had several scorpions and knew how to handle them, this one was so quiet and unlike the others doing enclosure maintenance wasn’t a problem as it just ignored me.



I guess I became a little too comfortable with its subdued ways and so one day whilst changing the water I was caught off-guard when it turned and stung me! Back then I could walk and I went to my wife who was hoovering and said “a scorpion stung me!” “Which one” she replied, “the desert one” and she calmly told me to go and sit down and she would be there in a minute. She was calm because she knew that if my heart was beating faster then any venom would be pumped around my body quicker, she was amazing and she drove me to the hospital.

The reason I have retold this story is because the pain was quite intense and it lasted a good few days and she fussed around me constantly, she was checking I was okay, how was my pain. Over a short period of time its possible to be that way towards a loved one in pain, its even possible over an extended period but its been about seven years that I have been in pain and no one can possibly be asking and fussing for that amount of time, thinking about it like that, I realise it would even drive me mad!

I know that it’s possibly harder for my wife as a carer than I could ever imagine, she looks after me making sure I’m showered, making sure I have drinks and my meds, then she has to cope knowing I’m in pain and putting up with me when the pain makes me grouchy and intolerable, also having to see me when I can’t take anymore and I just lay there crying.
I’m so glad I don’t have to be on the other side!

About SatonmyButt

Disabled husband, father, gramps. I have CRPS, CFS and arthritis. I have a dry sense of humour and I enjoy a good moan. I don't care about race, colour, sexual preference or religion, I do care if you are respectful to others.

https://satonmybutt.wordpress.com/2015/04/24/my-side/

Can You Cope With Neuropathy Possibly!

Today's post from fithealthinsurance.info (see link below) is a nicely written advice article about coping with neuropathy. Yes it tends to lean on many of the things we've heard before about training our brains to cope with nerve pain but it doesn't speak down to you and provides a slightly different perspective, with a sprinkling of humour which you may enjoy reading. By the way, the book she mentions is not new but is a valuable resource nonetheless. Worth a look.

You Can Cope with Peripheral Neuropathy
Practical and uplifting insights from patient-expert and author Mims Cushing: August 31, 2016 

“You might not be able to manage your body the way you like, but you can manage your mind,” counsels Mims Cushing, who has been jotting down coping tips from patients and professionals since chronic nerve pain disrupted her life more than a decade ago. Those handwritten words of wisdom are now available in the new book, You Can Cope with Peripheral Neuropathy:365 Ways for Living a Better Life (Demos, 2009, $18.95).

“In 1996 my feet were constantly burning and numb,” she tells the Post. “My lifelines to sanity were The Neuropathy Association and Dr. Norman Latov—the neurologist who co-authored the book with me.”
 
The Top Ten

When neuropathy gives you fits and you’ve done your best to seek medical advice:

1: Be excited about the buzz regarding neuropathy. People don’t say, “Never heard of it” as much as they used to. There’s a sea change out there that is making it easier for 20 million people to deal with, track, and understand their condition.

Today, The Neuropathy Association (neuropathy.org) can provide the name of a specialist near you. You can receive newsletters by mail and sign up with Google Alerts for updates. Experts recognize different types of the disease and dozens of reasons for having it.

2: Be grateful. It’s hard to be stressed when you are thankful and appreciative. Stress surely makes your neuropathy worse. To be less frazzled, keep a gratitude journal. (It doesn’t have to be a Pulitzer Prize winner.) At bedtime, think about what you’re grateful for—don’t groan about what you did wrong during the day or make to-do lists. Saying “I’m so grateful,” puts a different, healing spin on your feelings.

3: Be open to everything that might help you. Which technique seems out of place: acupuncture, meditation, tai chi, or drumming? Did you say drumming? Well, all of these methods (and others) are used for healing. I beat African drums at a senior center. Maintaining a powerful, constant rhythm is meditative. People in the class say their blood pressure and pulse rates go down. And on Tuesdays when I drum, my feet hurt less.

Dr. Jerome Groopman, renowned writer and physician, suffered an accident and was in pain for 19 years. Finally, he listened to a doctor’s advice to not give in to the god of pain. After one year of initially difficult exercise, he was pain free. I recommend Dr. Groopman’s books, including The Anatomy of Hope.
Consider new ideas you may have dismissed. And when you think about things you can’t do, remember that you now have the time to do things you may not have had time to do before your neuropathy: cook special recipes, research your genealogy, study a compelling topic, write in a journal, or create an indoor container garden.
And P.S.: Perhaps you must do some things differently, such as using a walker at the mall. But you can still do them.

4: Banish toxic people. You can wail about the curmudgeons in your life, slap ’em upside the head (which I don’t recommend), or ease yourself away—the best way to deal with them. Troublesome friends or relatives can make you sad or cause you angst, both of which make our illness worse. When my friend Madelyn heard someone was driving me nuts, she said, “Don’t let her rent space in your head!” Optimistic friends can help our spirit. Author Wayne Dyer says, “Your friends are God’s way of apologizing for your relatives.” Writer Judith Orloff calls the mean people in our lives “Energy Vampires.” Maybe you must be around difficult relatives during the holidays. Is it any wonder your neuropathy worsens then?

5: Focus on something greater than yourself—volunteer. I believe people quit volunteer jobs because they haven’t found the right one. A pianist in Ponte Vedra Beach, Florida, volunteered at a local hospital and was asked to change the sheets in the Emergency Room. After a few weeks, he asked if he could go to patients’ rooms and play music on a portable piano. He found the perfect job for him.

Sometimes volunteering means listening. It’s powerful to say: “You talk. I will listen.” A man I know got some bad news from a doctor. As he was leaving, the doctor put his hand on my friend’s shoulder. And my friend suddenly felt better. The church handout, Our Daily Bread, says, “When we forget about ourselves, we do things others will remember.” And, I add, we think less about our pain.

6: Love your cabbages and caviar equally. Consider chores to be as meaningful as creative hobbies and other diversions. Next time you are ironing or emptying the dishwasher, realize that it’s of value. Don’t rush around.

7: Let the good stuff in. Floridian Eugene Richardson, a retired Lt. Colonel and brilliant man who has had neuropathy for 41 years, watches for life’s little miracles (they are all around), and not for things to worry about. Do you have UFOs, Uninvited Foolish Observations, flying around in your head? Take a break from all the craziness in the world. When you have a crummy day, write about it or have a first-class pity party. Restrict the party to seven minutes, and do it when you are alone. You will carry on longer if you have an audience. Yes, your family may need to help you in a myriad of ways, but don’t dump your complaints on them. The less you fuss, the more they’ll want to help you.

8: Be kind to your body. This does not mean eating ice cream smothered with Chicken Alfredo. But you can hurt your neuropathy by jumping on hard surfaces, or doing certain kinds of Pilates, says Dr. Alan Berger, head of neurology at Shands, Jacksonville. I’ve figured out two perfect places where we can exercise without gravity being an issue: a swimming pool and a space shuttle. I’m buying a space shuttle. They cost around $50 billion, so I may have to get it on eBay.

Keep hunting for the exercise that’s right for you. Many fitness centers offer chair-based programs, even for yoga. Just as we can choose to not read a book we aren’t enjoying, or walk out of a movie, we can decide to change exercises.

9: Enjoy your own company. Now, a great spouse is a wonderful thing. So is a true friend, someone who will listen when you call at 3 a.m. But nurturing solitude is important, too. Find your own private place of peace: a park, a beach, the mountains, or the sea. Drive there or maybe just visit it in your dreams. Find stillness in solitude, and solitude will bring you peace.

Friends are not always available. YOU, on the other hand, are always available. Don’t beat yourself up because you have neuropathy. Treat yourself like gold. If you do that, you’ll treat others like gold, too.

One of my favorite sayings from writer Mary Gordon is, “I never feel so accompanied as when I am on my own. And I have figured it out. It is because God is beside me.” Another quote I love is, “You cannot see yourself in a rushing brook, only in a pond of still water” (Zen).

10: Embrace things that can embrace you back. Money can’t. A house can’t. Nor can a car or jewels. Friends and family can embrace you, and a dog can embrace you with a wagging tail. A cat’s purr is an embrace. Laugh along with what you embrace. Remember Norman Cousins’ book, Anatomy of an Illness, about the importance of belly laughs? Still a great read. Grandchildren can make you laugh, too. One grandchild said, “Grandma, your skin doesn’t fit your face.” Another commented, “Gram, you have curly skin.” If you don’t have a source for jokes, have someone send you a bunch from the Internet.

http://fithealthinsurance.info/2016/08/31/can-cope-peripheral-neuropathy/

Learning To Cope With Neuropathic Pain Or Popping A Pill

Today's post from instituteforchronicpain.org (see link below) is an excellent article about how chronic pain is treated. It talks about the modern emphasis on quick-fix cures and medications and bemoans the fact that not more emphasis is laid on learning how to cope with pain problems instead of just popping pills. As someone living with neuropathy, you will be aware that we are on the edge of this argument. Neuropathy symptoms can be so acute and long-lasting that we'll give anything for a pill to take them away and for many of us, that's indeed what we're prescribed but we also realise that techniques concerning coping with the pain can be equally important and valuable. The problem is that this involves another specialist, or therapist and most doctors need to get you out of the surgery as quickly as possible - not deliberate but a sign of the times where time pressure and costs are paramount. If we try to find coping solutions for ourselves, we're often confronted with 'new age' clichés that urge us to do things our rational minds agree with but are often impractical and vague. This article calls for more attention on coping therapies from the medical establishment and quite rightly so. Worth a read.
 

Coping: Ideas that Change Pain
Author: Murray J. McAllister, PsyD Posted on October 30, 2015

Coping-based healthcare is often misunderstood in society and, as a result, it is commonly neglected by healthcare providers and patients alike. Examples of such care are chronic pain rehabilitation for pain disorders, cardiac rehabilitation for heart disease, psychotherapy for mental health disorders, or diabetic education for diabetes. These therapies are often the last thing that healthcare providers recommend or the last thing people are willing to try, even though they are typically some of the most effective treatments for their respective conditions.

This misunderstanding and neglect is likely due to a number of reasons. Our healthcare system is set up for providers to focus on making patients well, not teaching them how to become well or get better at dealing with a health problem that won’t go away, such as chronic health conditions.

Another reason may be our shared desire for a quick fix. Understandably, when faced with a health problem, we often initially want something that will take it away, rather than coming to terms with the need to change our lifestyle in order to get healthier or become more effective at coping with the problem that we face.

Yet another reason is our societal misunderstanding of the role that genetics play in most of these chronic conditions. It’s not uncommon for people to report that their depression or back pain or heart disease or type II diabetes runs in their family, as if to say, there really isn’t much they can do about it. To be sure, at least some of these conditions, if not all of them, run in families, but a genetic predisposition is not destiny or fate. In all these conditions, the lifestyle choices we make in our lives also play a role and it’s healthy changes in how we live our lives that can make all the difference.

There’s also something about going to see a healthcare provider to learn how to be healthier that just doesn’t seem as real or effective as going to see a healthcare provider for a medication or a high-tech test or an injection or a surgery. Coping-based care, in other words, seems so intangible. Acute medical care is something that you can touch, see, hear, even smell at times. You walk away with medications in your hand, a dull ache at the site of where you got the injection, or a hospital wristband. Such tangibles are missing when you see your rehabilitation provider or your psychotherapist or your diabetic educator. You walk away with nothing but ideas on how to make healthy changes in your life. In other words, what you walk away with is all in your head.

Speaking of which, yet another reason why coping-based therapies get short shrift in our healthcare system is stigma. We all might intellectually acknowledge that we could make healthier choices in our lives or deal better with the chronic conditions that we have, but hardly anyone ever wants to openly acknowledge it to others for fear of being blamed. In the face-to-face encounter of the examining room, healthcare providers too typically have a hard time bringing up the fact that, say, a particular patient could benefit from learning how to cope better with his or her problems. The act of bringing it up implies a judgment that the patient isn’t coping well and it’s a sensitive topic. People can become upset. Healthcare providers, despite all their training, are just people too and they become nervous in such situations, often too nervous, and so the whole topic never gets raised. It’s easier to focus on the tangibles – the medications, tests, injections, and surgeries. Even if the need for learning better coping strategies does get brought up, it’s not uncommon for patients to refuse it, asserting instead that they actually cope really well, despite evidence to the contrary. It can seem advantageous to deny that you are coping poorly when, in our society, coping poorly is a judgeable offense.

For any or all these reasons, coping-based therapies are commonly considered an after-thought, after the ‘real’ healthcare has been tried and failed. It’s too bad because these therapies can be highly effective.

In an ideal (i.e., stigma-free) world, these therapies would be able to stand on their own and be recognizable as the effective therapies that they are. However, we don’t live in such a world.

All of us need to do our part to promote these therapies so that people who need them gain the liberty to use them and become healthier and happier. That’s what’s really at stake here: because of stigma and ignorance and fear, we as a society don’t readily feel free to utilize treatments that can make us healthier and ultimately happier people, even when we experience health problems that can’t entirely be cured.

To this end, at the Institute for Chronic Pain, we make every effort to promote the legitimacy and effectiveness of coping-based rehabilitation treatments for pain. Using common, everyday language, we develop explanations of them that show how and why they can be helpful. We persistently discuss issues related to stigma, particularly how to respond to it so that people can overcome the sensitivity that comes along with openly acknowledging the need to learn how to cope better with the pain that remains chronic on a life-long basis. We then use social media as a means to proliferate these ideas and make them known on an international scale. In short, we promote ideas that change pain.

Our latest effort in this regard is a new content page on our home website. It’s on the nature of coping and how learning to cope better with pain is one of the most powerful interventions we have in the field of chronic pain management.

We hope that you find it helpful. If you do, please pass it on within your social network. Take the risk to acknowledge that there’s nothing wrong with learning how to cope better with a health problem that can’t entirely be cured. You might just help someone else find the help they need.

Date of last modification: 10-30-2015

http://www.instituteforchronicpain.org/blog/coping-ideas-that-change-pain/