The Fibromyalgia Letter

The Fibromyalgia Letter
~Author unknown

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points – places on your body where slight pressure causes pain.

Myofascial Pain Syndrome is a chronic form of muscle pain. The pain of Myofascial Pain Syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality.
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behaviour? I may seem to be getting my life together and them bottom out all over again.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my “friends” are gone; even members of my own family have abandoned me. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flare. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.

While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses.

This is why I feel like a child at times. Just the other day I put the eggs I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.

Occuring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.

Sleep, when it happens or restless and unrestorative

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.

On a brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about Fibromyalgia. I am someone in your life that suffers from Fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

Lend a helping hand. If you want to be helpful to someone with Fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of Fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don’t take things personally. Some people with Fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me

Remembrance Day 2020

“In Flanders Field” was written during the First World War by Canadian physician Lieutenant-Colonel John McCrae

In Flanders fields the poppies blow

Between the crosses, row on row,

That mark our place; and in the sky

The larks, still bravely singing, fly

Scarce heard amid the guns below.

We are the Dead. Short days ago

We lived, felt dawn, saw sunset glow,

Loved and were loved, and now we lie

In Flanders fields.

Take up our quarrel with the foe:

To you from failing hands we throw

The torch; be yours to hold it high.

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders fields.

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I’d like to thank my friend Sargent Jeffrey Elo of the Ontario Regiment for doing virtual meetings with my Cubs, both the 1st & 13th, and our Beavers.. I was surprised & happy with how engaged the youth were during his presentation. With no veterans left from WWI & so few left from WWII, we have to keep remembering the veterans who died in these wars and the so many other missions since then.

Surprise!

I was pleasantly surprised today.

Today was one of those days where I needed a cane for support, or at least I felt I would before I got home. I went to the post office, then the grocery store next door. They didn’t have what I wanted so I crossed the street & went to the other grocery store. I left there with a little more than I was expecting to purchase, so I had two bags that I was carrying, one of which had a heavy bottle of pop. I went to a near by restaurant to order & take home supper. This gave me another bag to carry with my cane, the other two bags and my purse.

What was I surprised about? There was a lovely young lady who not only opened the first door out, but also the second door out. And she went out of her way specifically to help me. This is a rarity in my neighbourhood, even more so that she was black and young. (I’d say Africa-Canadian, but she would have been Jamaican). Either way, I was pleasantly surprised that someone gave me assistance, unprompted. 🙂

For her help, I again say thank you . 🙂

& I have 2 original articles of my own coming soon!

Five Simple Words….

Five Simple Words to Keep Chronic Illness at Bay
by Madeleine Parish

When I was diagnosed with Chronic Fatigue Syndrome seven years ago, my illness began to consume my thoughts and time. Questions taunted me like unrelenting harpies: What will I do? How will I manage? Who will take care of me? To try to keep fears and symptoms at bay, I studied up on my diagnosis, and chronic illness in general, became fluent in the language of disability, medical research, and insurance claims. I even started to find that, if I met someone new, my illness became my calling card. Not five minutes into a conversation with a perfect stranger, I would hear myself quoting study results, describing in clinical terms, suspicions about retro-viruses and other prospective pathogens. I talked about my illness all the time! Gradually, I noticed the glazed look in the eyes of friends and strangers as I reviewed the latest research findings, or described in minute detail the effects of my recent treatments. My illness had become my identity! Over time, I realized I would manage just fine, even within the framework of chronic illness, provided I took responsibility for my mental, physical and spiritual well-being, and made health and healing my first priorities. In doing so, I learned to change my attitudes, behavior, lifestyle, even my vocabulary. These five words helped me do just that:

Please

Before chronic illness withered my penchant for independence, I took pride and refuge in self-reliance. Independence protected me–or so I thought–keeping me safe and invulnerable to rejection. Then, when I couldn’t get out of bed for days, or when pain wouldn’t allow me to negotiate stairs, I needed help. With my back against the proverbial wall, I saw self-sufficiency for the prideful defense it was, and that it no longer served me. So I dug inside for some courage, dusted off untested humility, and asked for help (PLEASE!) And when I did, I learned four things: First, some people are not only willing to help, they like helping and feel honored to be asked. Second, some people say no for reasons that have nothing to do with me. Third, whether people say yes or no, asking them doesn’t kill me. (I admit to some emotional bruising when I felt rejected, but, hey, I survived.) And fourth, by asking without shame or embarrassment, I learn to help others when they need or ask. Eventually I found that the family and friends who wouldn’t or couldn’t help no longer bothered me, and I appreciated more deeply those who did. As a result of their responses, I began to get a different vision of myself, vulnerable, but still loved, respected and valued.

Thank You

On, how I loved it at first! The way people scrunched their faces in sympathy when I said I had a chronic illness! I had what I wanted most: their attention. It didn’t take me long to learn that, while I had their attention, I didn’t have their interest. Unless, of course, they were chronic rescuers, people given to latching onto someone’s misfortune as their mission, their justification, their hook into unhealthy co-dependency. Self-pity is a turnoff to healthy people, and it keeps ill people so focused on themselves and fence in by illness, that they fail to see that, outside the fence, life goes on. What is the best, most effective antidote to self-pity? Gratitude! Thinking myself grateful doesn’t seem to work when I’m most shaky and self-pity is knocking for permission to enter. I have more success using gratitude as a wellness tool if I take action by writing a list of all the things I’m grateful for. The act of writing, plus the tangible, undeniable list seems to work better and faster than a mental checklist. The list doesn’t have to be long or complex. It can be as simple as the fact that I can feel the sun’s warmth on my face, or smell the honeysuckle’s perfume drifting over my neighbor’s fence. (That’s not to say the big things, like family, friends, food and shelter don’t count!) If I’ve cultivated an “attitude of gratitude” on days when I feel good physically, when I’ve accomplished something I’ve worked toward, and when I’m surrounded by loving family and friends, I find it easier to come up with a list when my symptoms are raging.

No

One of the difficult lessons I’ve learned through chronic illness is how to set limits on how much I allow other people, even those with good intentions, to interfere with my health. When I first got sick, I wanted people to like me even more than when I was well, because I was afraid my health challenge would ruin my relationships. That I’d be left alone and miserable for the rest of my life. Trying to prevent that possibility, I accepted invitations and kept commitments even when I was concerned they would affect my well-being. To avoid disappointing a hostess, for example, I said yes to a party, even thought parties, in particular, zapped my energy and required two or three days recovery time. Eventually, I learned to be more selective, and that I had choices. One, I could say a gentle but firm, “No, I’m sorry, not this time.” Two, I could go and leave when I had to, and before I was exhausted. Three, I could attend just part of the party, or just stop by for dessert. It was important that I participate as much as possible, because I didn’t want to lose touch with my social network. Over time, a few “friends” couldn’t accept my limitations and stopped inviting me. Those who understood my necessary boundaries, though, stuck with me, and our relationships are that much stronger as a result.

Yes

Back in the ’80s I had a boss who talked a lot about “creativity within constraints.” When she did, I nodded doing my best to look wise, or at least intellectually agile enough to know what she was talking about. But I didn’t. Sure, I knew what the words meant, but I couldn’t apply the concept to myself. Creativity? That was easy back then. After all, I was young, healthy, enthusiastic, ambitious. But constraints? What were they? A few years later, illness taught me a lot about constraints and the importance of saying YES to the opportunities I found within limitation. My first months of chronic illness were spent in such pain that I hadn’t time, energy or mind enough to consider creativity. Survival was my mode. Pure survival. But gradually my health began to improve. At first an occasional hour or two of feeling better, then back into the pit. Then the better times grew more frequent. Then one day I surprised myself by saying out loud, to an empty room, “I want to DO something. What can I DO?” One day I was bemoaning my conundrum to a friend. He listened patiently, nodded in all the right places, and when I finished he looked at me as if I really wanted to hear what he had to say. Sensing a moment of truth on its way, I sipped from my cup of tea and braced myself. “For years,” he said, “you’ve told me how you’ve wanted to write. And all I heard was how you didn’t have time. NOW YOU HAVE TIME!” Yes, I thought, HE’S RIGHT. But after I thought about it, I shook my head. I couldn’t imagine sitting at a desk and typing for hours on end. But I could envision working on a laptop that could travel from table to sofa to bed, writing a paragraph or a page as my muse and body allowed. When my friend left, I picked up the phone, called a local office supply store, and ordered a laptop. Two days later it arrived. I signed for it, took it from the delivery man, and carried it inside, holding it like a sacred vessel that held my future. It was! Some days I couldn’t think. Some days I could think, but not write. But some days I could tap out a few sentences then paragraphs. Then I wrote an essay. And another. A piece of fiction. And another. Chronic illness may have imposed new constraints, but I always have the power to learn to live creatively within them.

Enough

Desire, the Buddhas professed, is the route of all suffering. NO WAY! Desire got me promotions, new cars, nicer clothes, a better tennis serve. It’s what keeps me striving, aiming higher, trying harder, running faster… Desire also kept me thinking that what I had wasn’t good enough, that I wasn’t good enough and that the only answer to “not good enough” was MORE. After I became ill it became apparent to me that, if I wanted to live at all peacefully, I needed to learn the difference between wants and needs. Because if I lived in a state of unmet wants, I would be not only chronically ill, but chronically miserable, too. The reality is that, even if I am in physical pain, or I don’t otherwise feel or look as I would like, and even if my bank account is dwindling, or my wardrobe isn’t up to snuff, if I stay connected to my spiritual source and to loving family and friends, my basic needs ARE met. I don’t want to be sick. But I don’t need to be physically well to be happy. When I hear the MORE MONSTER rearing his head, when I feel his self-effacing steam trying to wilt my confidence, it’s important for me to say one word, clearly, firmly, confidently: ENOUGH!

© 2009 Madeleine Parish

Madeleine Parish is the author of “A Pilgrim’s Way–Meditations for Healing”. She lives and writes in Fairfield County, Connecticut.
Source: www.healingwell.com

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This is something I really need to think about…