Sunshine In The Shade

In the shade of life the world can be too much. As a chronic pain sufferer, I know for a fact that some of us live in the shadows. Dark rooms, soft lights, dark glasses at all times of the day and night. Trying desperately to keep ourselves hidden from the light of day. These shadows extend beyond the light and dark on the outside to the darkness that dwells inside of us. No, I'm not talking good and evil. It's more like the difference between our feelings of inadequacy and hopelessness, and the knowing of hope and happiness.

Our insides can feel cold and empty. Can feel battered and bruised. And, not just from the beating we can take from life, but also from the blows that we throw at ourselves. We might concentrate on a bleak future or the virtues we lack. Others may not see our distress, but that doesn't mean it's not there. So, we live in the shade with sunshine all around us.

All it takes is a single step to see some sunshine in our lives. It's there for each and every one of us. There is always some light no matter how dark the room may be. Keep your eyes open long enough and you will begin to see the things around you. A little longer and you will see the shadows being cast by the objects in the room. A little light can be found in any situation. Keep your eyes open long enough and even the darkest life casts shadows of it's own.

Know that as bad as it may seem there's a little light there. Grasp it, hold on to it, and pull on it toward the horizon. Let it grow in your heart till it lifts your spirits up. Use it to leave the dark, the shade, whatever pain you struggle against in your life. Make the most of any light in the dark. Take that hope and follow it toward the sunshine of your future.

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Compassion Fatigue

My family is suffering from compassion fatigue. I have had a particularly prolific spell of migraines lately and my family has had really tough schedules. My wife's job has recently changed and a promotion means more than twice the work with no additional pay. We are, each of us, sapped by the abundance of events in our lives. I have noticed that my family is especially tired of dealing with my disability. If the migraines will just let up and allow us to have a restful vacation in August, we may be able to recoup our energies and regain our compassionate spirits.

I think the families of those of us in chronic pain, at one time or another, all suffer from compassion fatigue. A time when they can't handle dealing with the problems surrounding them. When they just can't deal with us and our afflictions. Everyone has times when fatigue overwhelms their ability to show compassion for someone else. Times when stress prevents us from giving freely of ourselves.


Compassion fatigue may be easy to spot in hind site, but it is important to take daily steps and make changes that might take the weight from our shoulders. Studies confirm that caregivers play host to a high level of stress and fatigue. Day in, day out, workers or family struggle to function in care giving environments that constantly present emotional challenges.

Dr. Pfifferling, director of the Center for Professional Well-Being in Durham, N.C., specializes in physician stress management. He is also a clinical associate professor at the University of North Carolina, Chapel Hill. He makes the following suggestions for dealing with or preventing fatigue as a care giver. These points are focused on the professional doctor, nurse, or aide, but could apply to all of us as the caregivers in our families.

1.  Spend plenty of quiet time alone. Learning mindfulness meditation is an excellent way to ground yourself in the moment and keep your thoughts from pulling you in different directions. The ability to reconnect with a spiritual source will also help you achieve inner balance and can produce an almost miraculous turnaround, even when your world seems its blackest.

2.  Recharge your batteries daily. Something as simple as committing to eat better and stopping all other activities while eating can have an exponential benefit on both your psyche and your physical body. A regular exercise regimen can reduce stress, help you achieve outer balance and re-energize you for time with family and friends.

3.  Hold one focused, connected and meaningful conversation each day. This will jump start even the most depleted batteries. Time with family and close friends feeds the soul like nothing else and sadly seems to be the first thing to go when time is scarce. 


(For those caring for a loved one with Alzheimer's or other totally debilitating disease adult interaction is a must have in order to keep your own sanity ~ Andy)

4.  Do not to make any major life decisions until you’ve recovered physically, emotionally and spiritually. This is perhaps the most important advice we can give. Don’t quit your job, get a divorce, or spend your money on a lavish trip or a new sports car. It may feel great at the time, but a few days or weeks later you’ll find yourself waking up to the same set of problems. 


(This may be particularly difficult for those of us with a long-term chronic illness, because recovery may not be in sight, but decisions have to be made ~ Andy)

5.  Similarly, blaming others, God, life, administration, staff, colleagues or the “system” will do you no good. Being adversarial will only exhaust you further and prevent the deeper healing that needs to take place.

6. Don’t spend your energy complaining. We also advise that you avoid commiserating with discontented colleagues. You’ve heard the old saying “misery loves company.” It’s easy to fall into the habit of complaining when you’re consumed by compassion fatigue, but it will only make you feel worse. There are other, more constructive environments to share your feelings.

7.  Compassion fatigue can make you vulnerable to addictive behaviors and substance abuse.  We’ve seen many clients try to deal with compassion fatigue by working longer and harder. Others self-medicate with alcohol and prescription drugs. There are a whole host of other addictive behaviors that are used to relieve personal pain. Don’t let yourself abuse work, alcohol or drugs and don’t fall prey to a quick fix. Just as drugs can be addictive and eventually cause a whole different set of problems, the quick fix almost always ends up complicating an already overburdened escalating the downward spiral.


The points given here are for everyone; The caregiver, migraineur, long time or chronic illness sufferer, and the people with too much stress in their lives. We all become fatigued at some point in the battle with our ailment. Each of us should practice these and other techniques to prevent compassion fatigue in our lives.


This post references Ideas and information taken from the following article ~ Compassion Fatigue, from http://www.swvatoday.com .

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Invisible Illnesses Make It Hard To Be Seen.

Had a hard time getting up this morning, because the 'invisible' was holding me down. The average person has no idea of the struggle each and every day between us, the non-average, and the 'gravity' of an invisible illness. We're told from a young age that we can't fight gravity. How unfortunate is it that what falls down does not necessarily get up.

You can finish a day strong. Lie down feeling great,  and have candy coated, cute and fuzzy dreams. Only to wake up with the pain from an invisible enemy that constrains your every fiber to the darkness of the cell you call your room.  Both eyes are kept closed and, opened slowly, one at a time to evaluate the state of the planet. Ears perk to listen over the constant ringing, to the beginning sounds of the day. Limb by limb, the determination is made as to the chances of making it the 10 steps to the bathroom and the possible start to a new day.

It's just not fair that so much work is needed to get up and attempt a normal life. Not fair when the moon and sun seem so effortless in their rising and falling circle that is the very essence of life on our planet. There are so many 'invisible(s)' in 'our' spheres, working hard against the gravity of living life on two feet. But, we must push on, each and every day. Thwarting the foe that would have us forgo the life and feats that have been given us by our creator.

Living is bittersweet, with the prize given to those that toil the hardest. We must strive to be seen by our families, our friends and the rest, in our all and sundry, to bring these invisible illnesses to the light of day. Get up each day, even if the time is short and share this life with someone else.

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• The Way Life Is (jilliancyork.com) 
• Living With Migraine, IS Work! (Against the 'Graine)
• Heroes fighting Invisible Illness (Against the Graine)
  

I hate Migraines

I've always thought of the word 'hate' as a word that is final, has a life of it's own, never dies, and is the worst thing that you can say to another person. But can I use this word to describe my feelings for a disease that has been a part of my life for over 25 years? Am I allowed to use this word against a foe that is not human? Am I allowed to place this curse on something that is not me, but is within me?

I have struggled with this philosophical question at times, wondering if hating a part of myself, my life, is in fact hating myself. There are those that would argue that the migraine is not truly a part of ones self. I know that I have made a conscious decision not to allow the migraine label to be a part of who I am. But it does live in and control my life much as the sun and rain control my ability to perform some outdoor tasks.

Is having something controlling my life make it a part of my life? Does it make it, in fact, a part of me?

A cyst or a lesion may be attached to my physical body, but not actually be a part of myself. The impact they cause is the effect they present. Removal of the physical is removal of the effect. A migraine is the effect of some, at this time, unknown physical condition that could be vascular, neurological, corporal, as well as many other systemic conditions. But, in truth, the pain is not a part of me.

Can I hate the effect, migraine, without hating myself? Most certainly! I am allowed to have a strong aversion to the condition that plagues me, and still love myself. I will not use migraine as a way to describe myself. I will not allow it to become a part of me. I will continue to seek its cause and treat the effect, without giving up. I do this because I hate migraines. I do not hate myself.

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Recovery Process

February of 1999 saw me home recovering from surgery meant to fix my "Dain Bramage".

Before leaving the hospital for home, my wife shaved my poor misshapen zipper head, so that the left side matched the right. I never allowed anyone to take pictures of my fez monkey hairdo.

Now, it was time to start the recovery process, and determine if the craniotomy had helped or hurt me. I was so determined to get rid of the migraines, I would have done anything and did. Now, I had to pay the consequences. I'm not just talking about a bad haircut, either. Soon after returning home, I started to have small seizures, that the anti-seizure medication didn't effect.

I began having episodes where I would stop talking mid sentence, and stand or sit with a blank look on my face. Sometimes, it was like blacking out, where I would fall to the ground and wake up just in time to feel the floor meet my head.

I began having episodes where I would stop talking mid sentence, and stand or sit with a blank look on my face. Sometimes, it was like blacking out, where I would fall to the ground and wake up just in time to feel the floor meet my head. Sometimes I would even repeat myself, without even knowing I had done it. I would have aphasia and not be able to talk, although, I could write what I was thinking. I would lose motor skills on my left side, and could speak in sign language using my left hand, but not my right. My aphasia might happen several times a day, and my whole family got used to Daddy phasing out or blacking out in the middle of doing something.

Luckily for me, I did not have any problems while playing recreation league basketball. Unless you count getting hit with an elbow and driving home with a concussion. Unluckily for me, I found myself lying down in the shower too many times too many.

**************************

I have recounted these stories of my 1999 brain surgery and recovery in order to give myself some peace, and maybe provide some information that would help someone else. I have not tried to recount every experience or discuss each decision as right or wrong. Everyone's life is their own, and each of us must make our own decisions. I did get nearly eight months, migraine free, but I don't think that I would make the same decision today knowing the other problems that were associated with the operation. Hind sight is 20/20.

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Dancing For Rainbows

It's hard to live with a chronic disorder. But harder still is to live without beating yourself up over things over which you have no control. I sometimes feel as if my family, my friends and even strangers see me as handicapped, a term that is meant to provide help, but is more often used by my mind to belittle.

Things in our lives attempt to belittle us and make us feel weak or small. In the world around us people pay lip service to being uplifting, but in reality turn and knock the wind out of us. We even beat up ourselves for our shortcomings and even our illnesses.

I beat myself up over the smallest things that are left unaccomplished, unattended, unreviewed. My life can sometimes seem a collection of missed opportunities. It is often hard to look to the positives, as they may pale in comparison of those things missed. It's like sunshine and rain.

We live in a world of sunshine and rain. It rains different amounts based on where you are, but there are always days of sunshine. We live for the sunshine days, that we can get out and work and play, unimpeded by the rain. We live within the rainy days, doing whatever we must to keep ourselves out of the wind and cold, so that we may be ready for the sun at a moment's notice.

A rainbow appears when the sun hits tiny droplets of water in the air, just as the sun and rain interchange roles. No one knows when or where a rainbow will appear. They just do. If we don't live in the rain, we will miss them. If we only live in the sun, they will elude us. We have to go on living in the world of both, overcoming missed and creating new opportunities. To be ready for the sun, we have to dance for the rainbows.

Post Traumatic Migraine Disorder?

I was going along, the day after surviving a three day migraine, minding my own business, when suddenly I involuntarily ducked my head, placed my hands on my forehead and winced.

Was it the bright sunlight reflecting from a car windshield? Was it the sound of a small child crying in an unusually high pitch somewhere nearby? Was it the strong smell of honeysuckle and freshly mowed grass? Was it the lack of sleep induced by the over abundance of restless rolling in my bed for three days straight? Was it all or none of these things?

Was it the memory of the pain? A migraine hangover. Post Traumatic Migraine Disorder, if you will. The fear that at any moment the monster that controls so much of my life, will rear it's ugly head, and try to take mine off at the eyebrows. At least I believe that the monster is ugly, as I have never actually seen the face, just felt the blows that usually hit without warning and from behind.

Any lingering of a scent, any fphlit-ering of light, or squeal of a siren over a mile away, sends me lurching away like Quasimodo from the bells.

Shunting the world around me is not the way to deal with living. I'm using all my tricks, avoiding those situations that put me in peril while welcoming life one day at a time.

It's Not Funny, But I Have to laugh?

Migraine's are not funny. But, laughter is good medicine. So, are these people actually healthier because they force themselves to laugh?

It seems to silly to think that forced laughter may actually make us healthier, but how many times have I faked a laugh only to begin laughing for real... A few, I'm sure.

Has anyone really died from laughing too much? I do know you can laugh so hard it hurts. But, at the same time it feels good to laugh that hard. I recently, was read a story that put me on the floor gasping for breath, and I might have suffocated if my friend had not stopped when he did.

But, I didn't get a migraine.

Is there a joke in here somewhere? I'm not feeling very punny today. (:{) ... Oooh, that was bad.

Migraine: Pain Free Day (PFD)

I wish I had found this heart generator before Valentine's day, but you know what, we should be showing our love, our compassion and our feelings for the one's we love every day of the year.

You too, can generate a heart (image on your computer) to share with others by clicking the link above. After making your heart, you will need to do a screen capture in order to download it. If you are using Windows, click "F3". On a Macintosh click "Command"+"Shift"+"3". After downloading to your desktop, use your favorite graphics program to edit or crop the image to your liking. You may then upload the image or email it to the loved ones in your life. I hope that you had more than a Happy Valentine's Day,

I hope you had a pain free day (PFD).

Migraine: Just Relax

As a migraineur I have a tool box from which to pull from, in managing my life. Even if I may not be able to manage my headaches, I can still take control of how I deal with the situation. My headaches seem to strike me down at will. Knowing how to relax and practicing is one of the tools I use to get past the pain.

I have quite a few tools in my box. One of these is the use of relaxation techniques. Relaxing was not something I thought I had to teach myself. Sometimes I think I am relaxed, when I'm really not. I can sit in a chair "relaxing", and suddenly realize that my teeth are clinched, or my toes are curling. I've found that relaxation is something I have to do on a continual basis or my body forgets how to do it easily. I try to relax at least once every day for about 10 to 15 minutes.

I usually use, what I refer to as the "Warm Hands" technique. I don't know if that is what it is really called or not. Maybe someone reading this knows? I either sit up straight in my chair or lie down on the bed. I close my eyes and concentrate on making each part of my body heavy and relaxed. I start with my feet. I work my way up to legs, hands and arms, neck and shoulders, and even my face. I've got to work in order to wipe the scowl from my brow.

Each part of my body gets attention as I breath in and out of my mouth very slowly. I repeat to myself, "My feet are heavy, my feet are heavy" until they are relaxed and feel heavy. Then I go on, to the next body part.

After I feel truly relaxed, I concentrate on my hands and repeat, "My hands are warm, my hands are warm" to myself until I can feel the warmth rising in my hands. Theoretically, this makes the blood rush to my hands and decreases the amount of blood in my head. Less blood in my head means that the inflammation of blood vessels and nerve endings is decreased.

I take my time doing this. Each body part can take fifteen seconds to a full minute. After I've concentrated on each body part, I go down the checklist and make sure that, in fact, each body part is relaxed.

I have learned several relaxation techniques that help me to deal with the pain. I use one or more of them every day. By doing this daily, it is easier for me to relax when I am hit with a migraine. When the pain starts, I tell myself, "Just Relax".

Migraine: Don't Pull the Trigger

I am constantly at war with my migraine triggers. I guess they are called "triggers" because I may as well be pointing a gun at my head. My triggers are like Russian roulette, only worse... I never know how many bullets are in the gun.

There are times when I can have onions on my burger and not be affected at all. Onions are one of my triggers, but I love them, and feel that they are what makes the burger a burger. Other times they hit me right behind the left eye. There is no way to know. Sometimes it can take up to three days, before I feel the impact. Other times, it is immediate.

A few years ago, I read the book, Heal Your Headache The 1,2,3 Program, by David Buckholz, M.D., in which he talked about how we each have a trigger tank. That tank is sometimes running on low, and other times, it is filled to the top. If the tank is low, a trigger may or may not push it over the line. Some triggers may immediately make the tank overflow, causing a migraine. Everyone has a different size tank. People may have the same triggers, but the fill-line level of the tank may be different.

Onions are a migraine trigger of mine that sometimes cause me problems, while wintergreen is a trigger that ALWAYS hits me where it hurts (the head, of course). Just the smell of wintergreen will push me into what I call "a Gran Mal" migraine.

I found it beneficial to try an elimination diet, in order to determine my food triggers. I found that my triggers include onions, hot peppers and other nightshades, citrus, fresh bread, aged cheese, and processed or aged meats. It is important for me to stay clear of any of these triggers.

It is difficult because I like each of those foods, but they obviously do not like me.
By eating any of these trigger foods, I am putting bullets in the gun.

Migraine: Get Up!

I have been a Nik Kershaw fan for a long, long time. His early music was criticized for being too "bubble gum" but I thought the his use of proverbs to be stimulating to my imagination. My favorite song, of his, is "Wouldn't it Be Good", but I re-heard one of his tunes the other day that hit me between the ears. If you haven't heard "Get Up" before, take the time to listen. 

This song exemplifies exactly how it feels, to me, to be suffering from the migraine malady and missing out on life. What hit me hardest was the fact that when the song played off the ipod in the car, my 15 year old daughter pointed out the obvious. "Dad, that song is about you!?".

  I couldn't keep the tears from my eyes. You can hear "Get Up" on YouTube, but this is not the artist's video.  I also found a good book on Amazon.com that I have ordered, but yet to read, with the same title. I'll give a review as soon as I finish it.

Here's the song from Youtube;

Here are the lyrics.

Get Up

It’s dark in there and you’re quite unaware
That the cracks on the ceiling are mocking you
Your airless bag, your dust in a shaft of light
And you think you might
Yeah you might stay there all day

Get up, get on your feet
Get up, don’t go back to sleep
Get up, life is bitter sweet
And it’s all going on without you

You’re safe in there, no sharks anywhere
Not a soul to get you doing what you don’t want
Go on pretend it’s Sunday again, it’s Sunday again

It’s so warm in there, feels like camembert
All the things you’d do if only you had the energy
You bargain for just ten minutes more of this
When a prince’s kiss
Turns you into a swan
Dream on

Get up, get on your feet
Get up, don’t go back to sleep
Get up, life is bitter sweet
And it’s all going on without you

Migraine: It's All About Attitude

Today is my birthday. My first thoughts were that 47 is not one of those special birthdays you celebrate with gusto. Then, I began to think that I was glad to have another, and not have left off at 46. So, today is my BIRTHDAY!! That kind of makes me feel better about this day.

I was given a copy of a newsletter over the holidays and told I should really read it. Yes, it was my wife who thought enough about me to keep sticking it in places I was sure to find it, and later directly in my hand. This newsletter is not published online anywhere that I can find, and it is such good information that everyone should get the chance to read it. The author is John Ingram Walker, M.D., the new section chief at Carilion Clinic Saint Albans Hospital in Montgomery County, Virginia.

Please take time to read this article and leave any comments you may have. I have saved it as a .pdf file, so you will need Adobe Reader to open it. It is worth every second of time you give to it, I know, as it took me four weeks to finally get the hint and read it myself.

... My poor Wife.

I can make my life better in 21 days. My first step has been to quit calculating the scale of my headache and to start calculating the scale of my life. I am doing this by ranking my day, not by the level headache that day (4 out of 10), but by ranking my day as a 6 and knowing that this is a better than average day.

Today is my birthday, and it is a 10!!!

Click either image to download the PDF version.

Migraine: Keeping Hope

I returned from a sixteen hour round trip to Jefferson Hospital in Philadelphia, earlier this week. Eight hours each way to spend less than seven minutes combined with both a doctor and a nurse. This was a pre-admittance visit. I had tried to handle the preliminary stuff over the phone, but it was a no-go.

Sometime next week I will be going back to Philly and will be staying somewhere between one and several weeks. I am apprehensive and hopeful at the same time. The expectation is that through an IV, they can hydrate and detoxify my system, and then, try several different medicines within a short period of time.

It wasn’t really a New Year’s resolution, but as of the first, I stopped taking any pain medication and I quit drinking caffeine. Caffeine has not been a problem for me, as I usually have a maximum of 1 cup of coffee or a soda in a day if at all. I have quit all together a few times for years at a time. I have done well with no pain meds, and have been able to subsist using meditation and exercise. My thought is that the detox should be simple if there’s not much to detox.

Many years have passed since a doctor has looked me in the eye and told me, with a sense of certainty, that there was something that could be done. Hope. I’ve claimed to have it, but I know I don’t always trust in it.

What is hope? Not desperation, not optimism, realistic hope? Eyes wide open, encouraged, organized, and realistic, faith in a pragmatic outcome is my personal definition (after a day of research). I don’t discount my Christian faith. As a believer in God and Christ, my comfort in the truth of eternity is my hope in an eventual cure. But I have a hope, a practical belief, that the answer to my pain is also in this world. Someone, somewhere has the key to unlocking this mystery.

Is the answer in Philly next week? I am hopeful. But, even if it is not, I still have hope. Five years ago, the word migraine was a shadow without any understanding by the general public. Today, there are more professionals seeking the answer than ever before. I have to keep the hope, and writing this down has helped me make it through another day.

Here are a few of the sites I found helpful today. I am not endorsing, just referencing;

http://changingminds.org/explanations/emotions/hope.htm

http://www.cbc.ca/canada/story/2008/12/31/f-vp-handler.html

http://en.wikipedia.org/wiki/Hope

http://expreacherman.wordpress.com/2006/11/20/what-is-hope/

http://www.desiringgod.org/ResourceLibrary/Sermons/ByDate/1986/537_What_Is_Hope/

Migraine: A Letter to Those Without Chronic Pain

I found this on the blog “In My Head...Aches”. The writer has not submitted an article since last August, so I was unable to reach him/her. I pray that this person is doing better.

I don’t know if I want my loved ones and friends to necessarily read this letter, but it does feel good to see that someone has put the thoughts, that I have had so many times, down in print.

I’ll have to think about it.

Letter to people without chronic pain:

“Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

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 not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Thats what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off or forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.”

-- Anonymous