This one goes out to my dear Brother, my family; and anyone who's been sentenced to a life-long sickness, &/ or has to live daily with any form of chronic pain.
AND TO MY FATHER, who seemed to never have a clue on what others felt, but always saw right through me; he knew the pain I lived with & it broke his heart.
"That's the thing about pain, it DEMANDS to be felt". ( From 'The Fault is in Our Stars').
Yeah, I know how tired you are of watching me fall apart, of waiting for me to "get better"...
I know, because I've been there. I've been at that level of exasperation; but that was way back. That was when I started protecting you from witnessing my chronic pain, from listening to my inevitable, constant, resurfacing complain ...That was when I started shutting you out.
Before I even realized I needed to preserve myself from being pushed to keep up the fight, to put on a smile, to (shut up about it & ) just carry on...; yeah, to your - (sorry, but...) - 'clueless' advice of universally-established 'quotes' on pain.
That was way, way back... Do you honestly think I wasn't there myself? How can you believe I didn't go through ALL of those "pick myself up - ( shut up) - & keep pushing forward" speaches, before I even started having to hear yours?
Chronic (unbearable & unbeatable) pain, is NOT an attitude. It's NOT a choice, nor a mood, or state of mind. It is not a stance on how you face life or take on the world.
And it definitely is NOT a definition of your strength and resilience capabilities. That's all accepted bullshit encouraged by people who - (I am positive) - have absolutely NO IDEA about chronic pain.
Pain changes you. It makes you want to abstract yourself from your body; it makes you push people away 'cause you know they're not gonna find the 'YOU' they know & love, it makes you give up on the the things you love most, it makes you miss the person you always were, and hate the person you have become (or more hopefully, just 'currently are'), it makes you hate the very skin you're in.
We talk about 'RESPECT' in this world of never-ending, every-day battles over anything and everything. I worship it - (RESPECT) - as the founding pillar of co-existence of any and every relationship known to man...
*** [SideBar - Sorry, can't help myself:
Justamente, The problem with humanity in most aspects of whichever it's conflicts, is precisely due to lack of respect. How does a world that lobbys and boasts respect in every corner, have such an inability to TRULY respect - (meaning: to respect even that which they don't understand or agree with) ?
Because most people define themselves as 'respectful', less than half of them truly are - but only of that which they understand, and as long as the differences they must respect don't defy their comfort - which basically leaves us with a relatively low percentage of people who are respectful even when they don't understand, &/or disagree with the differences they are respecting]. ***
...Yet there seems to be no respect, (actually, whatsoever) for invisible, physical pain. I wish there was.
Because the truth is, people who suffer from chronic-pain, or any other form of life.long sickness, can't help but to, (at some point in our endless struggle), appear to be caving into it, giving up the battle against it, letting it destroy us further, loosing (because of it) again and again, sometimes even to the point where there seems to BE no point, or nothing left to fight it for... Yes, allowing it to rule - (and ruin) - our worlds.
But believe me when I say, IT'S NOT A CHOICE.
'Strong', 'Tough', 'Bright', 'Brave', 'Tireless', 'Fearless'... Don't imply that I am not deserving of any and all my battles and 'titles' - fought and won, just because I'm not responding to your persuasion. At least honor me by walking a mile in these shoes before you strip me from my accomplishments.
Because the only real truth I've discovered in the millions of words said and conversations held on pain, is that people who don't have chronic pain, will never get even close to understanding it.
So, I AM (deeply and sincerely) SORRY for tiring, exasperating and frustrating your on-going attempts of getting me "fixed", with my attempts of trying to get you to understand what it's like, how it works, what it's about...
But please understand that I live with it - and myself - every second, of every day, (knowing it will be this way for the rest of my life) - I miss the hell out of her too! Even more than you! - so whatever frustration, exasperation and pain you might occasionally feel because of me, multiply it to a hundred thousand before you even try to convince me that you understand, because you don't. So please, don't belittle or judge me for it.
Instead know that MY ONLY CHOICE (actually), has always been NOT TO SHARE MY PAIN with you; and that to me, my biggest failure and hardest 'lost-battle' to chronic pain, is actually not having been successful at hiding it from you the countless times I gave-up and let you in on it.
People who suffer chronic pain, (or -again ' "have been sentenced to a life-long illness"), do not want to be pitied, and they are definitely not looking for attention - on the contrary, they want to be invisible when 'IT' strikes the hardest.
So, maybe just try to keep in mind, that if I'm hiding-out, or unresponsive to universal attempts at reaching me, it's because I'm actually trying to protect us both from the strain of
connecting and going through it - respectively. (Because it's exhausting; being in pain 24/7 - is exhausting).
We don't need you to try to 'fix us'; you can't. We just need you to sit with us & hold us through it - (also meaning hold the phone 10-thousand miles away, and just be there while we cry)...
And yes, we know... It's impossible not to give-up on someone when it seems to be they have given up on themselves ( & everything they once loved...). But we hide because PAIN IS ISOLATING - (who would want to be seen in it?) - NOT because we want to cut everyone out of our lives.
If you have someone in your life whom you care about, who has been diagnosed with any form of chronic pain, or life-long illness, you might want to read up on how you can help them, here are some respectable fybromialgia links that apply to any other similar illnesses such as, rheumatoid arthritis, chronic fatigue, MS, ALS, etc.
(Maybe this humble advice can help too: all we really need is to be understood. It's not up to us. It can't be changed. We are doing the best we can).
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Fibromyalgia Definition
By Mayo Clinic Staff
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.
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UNDERSTANDING FIBROMYALGIA
An open letter to anyone who has a fibromyalgia patient in his or her life.
If you are reading this, someone close to you lives with and suffers from fibromyalgia (FM). Since FM is invisible, many find it hard to believe that it is a real illness or that anyone could really hurt that much all the time. Unfortunately, this is one of the main reasons that fibromyalgia is so often misunderstood, misdiagnosed and not properly treated.
Fibromyalgia is a central nervous system disorder that has three primary components: pain, fatigue and sleep problems. (1) Pain – The pain may vary in intensity and location, but it is present most, if not all, of the time. (2) Fatigue – The fatigue is not like the tiredness you might feel after working too hard or overdoing it on a sports field. It's a pervasive, all-encompassing exhaustion – like someone pulled the plug on your energy source. (3) Sleep – The person with FM usually has difficulty sleeping. And even when they do finally sleep, they never reach that deep REM stage of sleep where the body refreshes and restores itself.
The root cause of fibromyalgia remains a mystery, however, it is usually triggered by some kind of trauma to the body, such as an injury or illness. In some cases, it can also be triggered by a severe emotional trauma. Regardless the source, FM devastates the life it touches. Unrelenting pain and fatigue reduces a person's ability to concentrate, perform daily tasks, work, socialize, exercise and sleep. The more severe the symptoms, the more incapacitating it can be. Fibromyalgia often leads to depression, isolation and loss of self-esteem. Sadly, people whose FM is poorly controlled may also be at increased risk for suicide.
There are four main things someone with fibromyalgia needs you to understand:
1. What they are feeling and experiencing.
If you have a difficult time imagining what it must be like to live with the pain of fibromyalgia, I'd like to challenge you to try an experiment. Take a wooden clothespin – the kind with the spring that works by pinching one end together and clamping the other end to the clothesline – only instead of attaching it to a clothesline, clamp it to the end of one of your fingers. Now go about your business and see how long you can leave it on. While you still have the clothespin attached to your finger, try to imagine how it would feel if you knew you couldn't take it off when the pain got to be too much. What would it be like to have that non-stop pain all over your body? Now think about what it would feel like to have the flu at the same time – the kind of flu where every muscle in your body aches and it takes every ounce of energy you can muster just to drag yourself out of bed. Finally, imagine that the pain and fatigue doesn't just continue for a day, or a week, or even a month, but goes on for year after year with little hope that it will end. If you can imagine that, then you have a small inkling of what your loved one lives with each and every day.
2. What they are not.
Fibromyalgia is not a psychological disorder – it is an all too real physical illness. Those who have it are not hypochondriacs; nor are they lazy, overly sensitive or just trying to get attention. And they are not simply depressed. Although depression may or may not accompany FM, it is not the cause of it. The percentage of people with FM who also have depression is no greater than for any other chronic illness.
3. Every fibromyaglia patient is different.
The differences in FM patients exist on a couple of levels. One is the severity of their symptoms. While one patient may be able to continue working, another may be severely disabled and in some cases, even confined to a wheelchair. Just because you may know someone else with FM who is functioning fairly well doesn't mean your loved one is faking or not trying hard enough. It simply means they have a more severe case.
Another big difference is how various treatments options work. What helps one person with FM doesn't necessarily help another. Also, people with FM tend to have a lot of sensitivities to medications, so it often takes much trial and error to find something that will help. We find that what works best for most FM patients is some combination of medication, gentle exercise, lifestyle changes, and often some kind of complementary treatment like massage therapy, acupuncture, supplements, etc. Unfortunately, it can take a long time to find that ideal combination.
4. What you can do.
The main thing your friend or family member needs from you is your understanding, support and encouragement. They know you can't take their pain away. They just want you to listen without judging them and let them know you care. Often people with fibromyalgia have told me that the emotional pain of having loved ones question the validity of their illness or accuse them of just being lazy is, in many ways, worse than the physical pain they have to deal with. They already struggle with feelings of guilt because sometimes they can't “be there” for family and friends as much as they'd like to be. Try to reassure them that you care about them for who they are, not just what they can physically do for you.
If you'd like to know some other ways you can help, there's a very nice and inexpensive little book that is chock-full of suggestions. Read my review of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend for a sampling of its contents.
Finally, if you'd like to learn more about FM, please check out our Fibromyalgia page at ChronicPainConnection.com and feel free to ask questions.
Best regards,
© Karen Lee Richards
ChronicPainConnection Expert
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http://www.webmd.com/fibromyalgia/default.htm
Treating Fibromyalgia Pain
It can be difficult for anyone to balance everything in life. But when you have fatigue and chronic pain from fibromyalgia, prioritizing your activities and taking care of yourself is even more challenging -- and more important.
“For many people with fibromyalgia, it can be difficult at first to find a balance that feels comfortable,” says Kim D. Jones, RNC, PhD, FNP, associate professor at the Oregon Health and Science University School of Nursing. “Chronic pain and fibromyalgia fatigue may prevent you from doing some of the things you were used to, such as working, taking care of your family, and participating in hobbies and activities you enjoy.”
You can live a full life with fibromyalgia, however. The key is to listen to your body and be flexible with your plans. You may find that you need to schedule in a day of rest after certain activities. Or sometimes you’ll need to rearrange your day to put yourself first.
With fibromyalgia, slowing down and doing less can ultimately allow you to do more. Here are five strategies for living a balanced life.
Coping With Fibromyalgia: Put Yourself First
“People with fibromyalgia are often so used to doing things for others -- whether it’s for family, friends or work -- that we end up doing a disservice to ourselves by taking on too much,” says Lynne Matallana, president and founder of the National Fibromyalgia Association. Matallana has lived with fibromyalgia for 10 years.
“I’ve found it’s really important to learn how to take care of yourself and focus on your own needs,” she says. Depending on how you feel, that might sometimes mean lying in bed all day reading a book or going to a movie with friends. “It’s important to understand that taking care of yourself will ultimately help you heal.”
Set Limits When You Have Fibro
It’s also important to know your limits and to let others know that you may not be able to do everything you used to. “You shouldn’t feel bad when you need to say ‘no’ to requests,” Matallana says. “Fibromyalgia is a legitimate chronic illness. You have the right to do what you need to do to take care of yourself.”
Try these tips for taking care of your own needs:
Keep your options open. “When you get an invitation or request to do something, tell the person that you’re very interested, but you’d like to think about it and get back to them in 24 or 48 hours,” Jones says. “That way, if you decide you can’t do it, you won’t feel so put on the spot.”
It’s OK to cancel. If you’ve scheduled something and you aren’t feeling well enough to do it, reschedule. “Don’t beat yourself up if you can’t do something,” Matallana says. “Try to remember that there will be other times you can do it.”
Keep a fibromyalgia journal. Recording your activities, meal times, sleeping schedule, and how you feel each day can help you identify what causes your symptoms to flare.
Delegate. Negotiate with your spouse or family members to take over certain tasks, such as cooking or cleaning, when you can’t do them. Try to work with your family to come up with solutions together.
Take a break. If you’ve been active on organizations or committees, consider taking a break for a period of time while you focus on taking care of yourself.
Eat out or order in. Rather than having family or friends over for dinner or holidays, make reservations at a restaurant or order in.
Plan activity during the hours you feel the best. For many people with fibromyalgia, this is between 10 a.m. and 3 p.m., but it may be different for you.
Don’t be afraid to ask for help. “People will usually go out of their way to help if you ask for it,” Matallana says. “But they need to know what you’d like them to do.”
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http://www.ukfibromyalgia.com :
Welcome to UK Fibromyalgia, the site for fibromyalgia sufferers.
The independent voice of UK Fibromyalgia
For years you have been hurting all over and are constantly feeling exhausted but your doctor has been unable to help. Your friends and family have started suggesting that it may be all in your mind.
The good news is that you have finally been diagnosed with something called fibromyalgia but the bad news is that your doctor says there is very little he or she can do about it. Without a magic cure you need to take personal control over the management of your illness. This site aims to help you in that endeavour. Start with the blue "FM Support" button in the top left hand corner.
UK Fibromyalgia is a member of Disability Rights UK
Quick Help
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http://www.everydayhealth.com/fibromyalgia/fibromyalgia-emotional-support/helping-a-friend-with-fibromyalgia.aspx
If someone close to you has fibromyalgia, you already know that living with this painful chronic condition isn't easy. Coping with muscle aches, poor sleep, fatigue, brain fog, and a host of other symptoms can be debilitating, physically and emotionally. And a sudden fibromyalgia flare-upcan temporarily put life on hold.
A network of understanding people who can help out on difficult days can make all the difference in the way someone with fibromyalgia manages on a day-to-day basis. Here's how you can most effectively lend a hand:
Get educated. "If a person has a chronic condition, it's going to affect the people who care about him or her as well," says Phyllis Talarico, former patient services coordinator of the National Fibromyalgia Association and founder of the North Orange County Fibromyalgia Support Group in Yorba Linda, Calif. "Education is vital for you to understand the symptoms and help them find the right treatment."
Communicate openly. If the person in your life who has fibromyalgia is your spouse, the lifestyle you created together is probably going to change — and it's important to talk about what this means. For example, you may need to take over more responsibility for the household, and the kids may need to pitch in more as well. Remember, even though fibromyalgia is not always visible to the naked eye, the pain your loved one is feeling is very real. "I often hear, 'I don't look sick, so my husband doesn't understand why I can't do the things I used to do,'" says Talarico.
Be flexible. One of the challenges of living with fibromyalgia is that symptoms can intensify unpredictably. Your spouse or friend with fibromyalgia may feel fine in the morning, do too much, and be in pain by the afternoon. If you've made plans to do something together, it will help if you're understanding and willing to reschedule.
Encourage physical activity. When people are fatigued and have aching muscles, getting some exercise is probably the last thing on their minds, but studies show that activity can actually ease their fibromyalgia symptoms. Suggest that the two of you go for a walk or a leisurely bike ride, or sign up for a water aerobics class together.
Urge your loved one to join a support group. Whether people with chronic illnesses participate in person or online, it can be very helpful for them to share their experiences and get advice from others with the same health considerations and life challenges. Some support groups also invite caregivers to take part. TheNational Fibromyalgia and Chronic Pain Association, the Arthritis Foundation, and the American Chronic Pain Association are good resources for finding groups.
Ask for help yourself. "Caring for someone with a chronic illness is not a one-person job," says Deborah Halpern, communications director of the National Family Caregivers Association. "It's not a sign of weakness, but of strength, to recognize that you need help to do this." Good sources of assistance can include friends, family members, neighbors, your house of worship, community groups, support groups, and social service organizations. It's also a good idea to keep a list of things that you could use help with — picking up medication, for example, or getting a ride to a doctor's appointment. Then, when people ask you how they can help, you'll quickly be able to tell them.
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