The Everyday Struggle

Every day I talk to people who suffer from different forms of chronic illness. Many of them have fibromyalgia, but many suffer from other things as well.

One of the most common feelings that we all deal with is the feeling of not being understood by anyone and a feeling of being alone in our struggle. I'm here to tell you that you are not alone. We might all struggle through different symptoms and pains but we all struggle with the same emotions and difficulties that these illnesses bring along with them. We all simply desire someone to understand us. We all hope to have someone to support us on days that we don't feel like we can keep going on our own. We want a normal life or at least to be treated like life is normal.

Every day is a challenge when you have chronic illness. Each morning you awake not knowing how your day will be, what new pain might hit, whether you might get by with a pain free day, or whether you might not even be able to get up out of bed. Some days things get so bad it feels like it isn't even worth the fight, but then other days are a nice surprise and you might even feel somewhat normal. We live for those moments of normalcy. We crave those moments of life.

Some of us are lucky to have amazing support systems. People in our lives who try very hard to understand and be there for us. People who say the right thing or do the right thing when life is going awry. But even with a good support person or people, some days it is so hard to keep going forward. Sometimes it is so hard to even tell those people how bad it really is for us. There are some things that cannot be said to someone who doesn't suffer with our illness. There are some things that cannot be understood by someone who is not in the same situation. It is in those moments that I write. I share with all of you my deepest feelings and sometimes the things I cannot say to people who don't have this illness because I hope that in my sharing you will find something that is within you as well. I hope you will realize that you are not alone.

Even with all my openness and faith in my readers, there are still things I cannot bring myself to say in my public writings. For those things I keep a journal. I think keeping a journal is of vital importance. It allows you to get out those thoughts and emotions that eat at the corners of your mind. Sometimes there are thoughts that cross one's mind that should not be shared because you probably don't mean them but they would concern anyone who heard you. Venting is healthy but often misunderstood. A journal solves the problem. You can get the thoughts out there but not cause concern to others. Often times journaling helps me get past my darkest moments and back onto a path of life and happiness.

Speaking of happiness, I am fully aware that living a life engulfed in pain is not always conducive to living a life of happiness. It can be difficult to feel positive about life or even moments when pain is ever present. It can be frustrating to feel as if you are stopped at every turn by a new or increasing pain in your body. Some days it may feel as if there is no hope and without hope it can be near impossible to find your path to happiness.

For the last many months, I myself have been in a deep dark depression. It's not the first time this has happened. When you live a life with chronic pain, it can be a challenge to remain positive. I don't think anyone could be expected to be happy all the time with these types of illnesses.

My worst depressions have always come when the pain gets worse and I feel my life is somehow interrupted. When I first became ill I had to stop working, I had to learn my limitations and how to live within them. I had to learn how to live with constant pain. That took me years. Finally I felt I had truly begun to live somewhat of a normal life. I knew my limits and lived within them.

Then thing worsened. I developed new pains. I was diagnosed with arthritis and other illnesses on top of my fibromyalgia. Once again my life was interrupted by pain. I tried to keep going but the pain became so bad that it kept me from being able to so much. As the pain interrupted my life, the depression set in and worsened. The darkness overtook me. I honestly didn't know what to do anymore.

I finally got so bad that I basically had only 2 choices. I could give up on life entirely or I could get mad a fight. I chose to fight for my life. I decided that I would have to learn to ignore all but the worst pain and live! That's all it took to start my climb up out of the dark. Making the choice to live allowed me to see the light once again. And even though I still have moments of intense pain, even though I have dark moments of sadness, even though some things still infuriate me about this illness, I am managing to remember how to live. I am crawling up out of the hole I had fallen into. I realize I am not alone and that I don't have any right to give up.

So I live with daily pain in my back. I live with daily migraines that I fight like crazy. I live with disappointment in myself for not being able to do the things I want to some days. Sometimes I do things I want to even when my body says I shouldn't just because if I don't the emotional fallout is worse than the physical pain.

Every day is a struggle for me. Every day is  painful in ways that most people cannot even imagine dealing with. Every day I hurt and cry and even fear, but I keep going anyway. I keep going because I am not alone! I keep going because, even with all the pain I suffer with, I know that life is worth it in the long run. I exercise and push myself a little more every day. Someday I'll find a level ground, a place where life feels somewhat normal for me. Until that day I just keep finding reasons to be happy. Little things that make me smile or give me a small feeling of joy. It's those little things that can make a world of difference and I'm ever so thankful that there is always something.

Searching for Medical Care

One of the most difficult and stress filled things for a person with chronic illness to do is the search for a new doctor. Maybe you have to find someone because you moved or your old doctor retired or you simply have come to the conclusion that your current doctor isn't doing their best to help you. Whatever the reason this is a frightening undertaking for us.

It shouldn't be this way but it is. Why? Because the first question the office tends to ask is "why do you need to see the doctor" and when you say pain or fibromyalgia or lupus or CFS, the next words are often "we don't do pain meds here" or some variation thereof. Often doctors will refuse to take on chronic pain patients at all.

Each and every time this happens to myself or a friend a little voice in my head sings out "do no harm", which is a part of the doctor's sacred creed or oath. Of course recently I've done some research on the "Hippocratic oath" and discovered that these words do not seem to appear within it. So maybe I cannot expect these learned people to abide by any real moral code. Maybe I cannot hope that doctors actually wish to ease my suffering.

I have moved many times. I have traveled a good deal. Often I've had to seek out medical assistance because of my conditions, which all seem to cause me pain in one form or another. I find that about 1 in 25 doctors actually wants to help. That means that only about 4% of the doctors I've met, dealt with, or somehow had contact with are actually interested in easing pain, making life livable, and discovering core issues behind new problems as they arise. The rest are generally unhelpful, rude, and often extremely dismissive. This is a sad statement on our medical health care providers and possibly on the institutions which educate them.

Nobody in this day and age should have to live in constant pain. Nobody should have to suffer on a daily basis. There are plenty of medications, supplements, and other options available out there that can help us. Sadly we have to educate ourselves about these choices because nine times out of ten our doctors either don't know or don't bother.

It's sad that people with chronic health problems are looked at differently, treated differently, and are more or less outcasts when it comes to medical care. We have to search for the one doctor who will help us. We have to make dozens of calls and sometimes even go to several appointments before the right doctor appears. During the search we get subjected to accusations, dirty looks, name calling, or just being treated like a lower lifeform.

Doctors, if you are reading this maybe you are one of those 4% and you are willing to try. Stand up for the chronically ill. Be a voice for positive change. We deserve care and respect just as any other.

You Know, Pain Won't Kill You

A friend of mine told me today that her doctor said to her "you know, pain won't kill you". Really? This is just the type of doctor that makes me want to scream or slap someone. We have multiple diseases, all of which come mightily equipped with torture devices to cause plenty of pain. We experience a kind of pain that you cannot even imagine on a daily basis.

My doctor wonders why I don't trust doctors. She can't understand why I hold back and don't always tell her just how much pain I'm actually in. Well, there it is. There's my reason. It's doctors like the one that made this comment that train those of us who suffer to suffer in silence.

We who suffer in silence often sit at home crying over excruciating pain that would send most normal, rational, people running to the nearest emergency room and collapsing. We shed our tears in dark, quiet rooms because the sound and light make it worse. We hide our pain in the raging madness that is our mind because society doesn't want to know that anyone suffers so.

I once had a doctor say to me that NOBODY should live in pain. With medical advancements and all the choices of medications that can be used, nobody should have to live a life of suffering. She was the best doctor I ever had mostly because she didn't believe in allowing someone to feel like they were dying only to have no end or hope in sight.

There have been days, weeks, months where my pain has been so severe that I wished it were terminal because at least that would provide an end! No, pain won't kill us, but how often we wish it would just get it over with already.

I thank the heavens for my current doctor too. There are things about her I don't like very much but I appreciate so much more about her than I dislike. She cares! She wants me to tell her when I hurt! And she understands it better than most do and she BELIEVES my pain is real. She sends me for testing and has discovered several other causes for my pain that most doctors would not have noticed because they dismiss chronic pain so readily, as if to say that how we feel doesn't matter.

It takes me forever to choose a doctor when we move because I feel I deserve a doctor who is willing to listen, believe and show some compassion. Terms I avoid when choosing a doctor:

• It's all in your head
• We don't do pain meds (because that means you don't care that I suffer or you don't believe me. either way this is unacceptable)
• Fibromyalgia is a catch all (it isn't. that is an antiquated belief)
• You are too young to be in that much pain (my age has nothing to do with my pain)

I'm sure there are others but these are definitely some pretty terrible ones. I've only had a couple of doctors pull the "It's all in your head" thing and then they try to backpedal and explain it off but that comment is usually enough to tell me that getting proper care will be a struggle.

"We don't do pain meds", in my mind, is code for 'I threw out my belief in do no harm and decided to go with treating everyone the same'. I don't like heavy medication and it actually does very little good for me. I have a very difficult time swallowing pills and don't enjoy having to take them. However, the minute you tell some doctors that you suffer from Fibromyalgia or any other chronic pain illness, you suddenly turn into a pill hound or druggie in their mind and that's it. There is no room for debate or discussion. Sorry, I want a doctor who cares about ME enough to try to work with me and keep my pain under control. If you don't care enough to do that then you are not going to gain my trust enough to tell you when other things are wrong. If you aren't going to talk to me about what kinds of medications have and haven't helped, or consider my UNIQUE medical history, then you are treating me like every other person who walks through your door. Medical relationships should each be personal and unique and there is a major element of trust within them, mutual trust if it is going to work properly. I currently suffer from several conditions that need monitoring but if I don't trust you to help me, then you can't.

"Fibromyalgia is a catch all". I So hate that one. Doctors used to believe that Fibromyalgia was diagnosed when nothing else could be. It was a 'catch all' for those with chronic pain but no medical explanation. This has been proven in more recent years to be incorrect. Fibromyalgia is in fact a real disease in and of itself. It consists of a set of symptoms that one can have many of or few of, just as with any disease. It is generally accompanied by certain other diseases that tag along like terrible friends. If a doctor calls it a catch all then they are not keeping up to date on their medical education and they are NOT going to be aware of new possibilities to help me. Again it's a matter of trust. How can I trust someone who thinks my disease isn't even real.

And the "you are too young". Ok that one gets pulled more than you'd think and has for many years. How old do I have to get before I stop being too young? And really what does my age have to do with the amount of pain my body gives me? This one I avoid more because it ticks me off than because of trust issues and I really hate to start a medical relationship off on that foot.

Oh and did you know that pain makes one very crabby sometimes. I am already irritable enough without any help most days. The more pain, the more I am likely to snap. Doctors need to understand that and make some effort to be compassionate. I am not looking for sympathy or pity but I would appreciate some mutual respect and understanding. You are my DOCTOR, that is a very personal relationship to me. I know you see a LOT of patients every day but I need you to be with ME when you are with me. I need you to see ME in front of you. I need you to listen to ME about what's going on. Don't talk at me, talk TO me. Don't treat me like the person who just irritated you in the last room, treat me like ME. If you need a two minute break before you come in, take it. I want you to be fresh and ready to change gears if need be. I am hurting and usually scared. You are the only person in my world who can alleviate that just by being kind and understanding. You are that person because you were trained to understand the signals and symptoms my body is throwing at me. I know how I feel but YOU are supposed to know what it means or be willing to find out.

Remember that as a patient I am hurting, sick, frightened and in need. I offer you trust and respect. I ask in return that you trust and respect me. I look to you for guidance and understanding. I look to you for a ray of hope when I feel hopeless and lost. Maybe that isn't fair but when a person is ill they have to trust their doctor. Are you going to be worthy of the trust that I must place in you in order to keep going? Do you even understand how important you are in my life? Do you even care?

Doctors I beg you to think before you speak. I ask you to see your patients as individuals with unique situations. Work together to create a trusting, symbiotic relationship. Only by working together, listening to one another, and trusting in each other can there be any hope of a chronic pain patient having some semblance of a normal life and really that's all we want in the long run.

The Pain Scale. Really?

My husband and I both require physical therapy for pain and endurance. We have been fortunate enough to become aware of a local program here in the area we live that can send a physical therapist into our home.

Each time our physical therapist visits we are asked what our pain level is on that ridiculous pain scale of 1 to 10. We've learned to become much more aware of what our own levels are at any given time. We have talked extensively with our nurse and our physical therapist about what we think of the pain scale.

It occurred to me today that because we live with chronic pain we are in the unique position to understand the pain scale in a way most people cannot. We are more familiar with the different levels of pain. We are acutely aware of the subtle difference between a level 3 and level 4 of pain. We have learned to reserve levels 9 and 10 for "take my butt to the hospital NOW" pain. We have this understanding because we live in chronic pain and because we are constantly asked to assess the level of pain we are in.

As we discussed all of this we then somehow ended up discussing how people describe their pain. What terms we use and how each of us perceives certain pain. I realized that a person suffering from pain describes that pain much differently than someone who has been trained in a medical field. Someone like my Physical Therapist would not explain a pain in their shoulder the same way that I would. A doctor might describe pain in the lower back differently than someone like me who has not been trained but simply suffers with it all the time. These differences can lead to extreme misunderstandings.

For instance I learned today that the headaches I get, though as severe as a migraine, are not called migraines. I don't remember what he called them. I call them pain induced migraines but there is an actual name for them which means exactly what I call them but leaves the word migraine, which confuses doctors, out of it.

I suffer from pain every day of my life. Some days are worse than others and the pain often moves and changes. I often do not let it show to people outside of my immediate family because it doesn't serve me to do so. I have been trained by doctors and life in general that most people do not want to know how much pain I am really in or they won't believe it when I tell them. I find that it is common for people to believe that someone in pain like mine is exaggerating, when in reality we are usually downplaying the amount of pain we are in.

Today, for instance, my right thigh hurt. It feels like it is bruised but I haven't done anything to it. My shin hurt as well but only if touched. I had pain in my abdomen as if someone was driving knives into both sides just above my hips. If I took a breath that was just a little too deep it felt like spikes driving into my right side and my right shoulder blade in back. I couldn't wear a bra because the pressure on my spine where it touched my back hurt so intensely, it was like needles driving into one vertebrae. It felt like sharpened knitting needles being driven into my shoulder blades on both sides in my back. I could feel my shoulder popping as if it popped in and out, though I know it didn't actually pop out. And I don't even know how to describe the pain in my neck and head. And these were just the worst pains, the minor ones are not worth mentioning.

Most people don't want to know all of that. Even our doctors have trouble believing all of this or understanding it. We live in constant pain but beyond that we live under constant scrutiny and seldom understood or believed.

With all of that in mind, how can a pain scale of 1 to 10 aptly capture our true level of pain? It can't. However, as chronic pain sufferers it is our responsibility to learn to work within this system no matter how inadequate it may be. We easily are more familiar with our own bodies than those who do not live with pain every day because we are unfortunate enough to truly feel every part of our body at some point.

I have spent years complaining about how this system does not work for anyone and certainly not for people who suffer from chronic pain. I have now come to the conclusion that it can work if we MAKE it work, it is simply never explained well enough to those in chronic pain.

Usually we are told that 10 is the worst pain you've ever experienced, but with a chronic pain sufferer that is not a sufficient way to explain this. Chronic pain sufferers need to see this 1 through 10 scale in a whole new manner.

1. YAY! A Pain free moment (ie: of course there is pain but it's thankfully so little that it might as well be pain free)
2. Totally can handle it (ie: like being poked with a knuckle but nothing too terrible)
3. Tolerable if I don't do to much 
4. Tolerable but getting difficult
5. I need my pain meds
6. Might need more than normal medication, and maybe a warm bath.
7. Take meds, lay down, I'd cry if this wasn't so typical to my condition
8. If this gets any worse we might need to go to the Doctor or ER 
9. I need someone to take me to the Doctor or the ER NOW
10. Call and ambulance or rush me to the ER right now!

This still might not be perfect. Feel free to tweak it to your specific needs. Whatever you decide, I encourage you to really get to know your pain and your body and find a way to work within the confines of this pain scale in order to help your medical care providers at least some way to understand you.

Our descriptions of our pain might not always work for our care providers, but if we can find a way to work within the terms they are used to understanding and we can communicate our interpretation to them as well, we have a better chance and receiving the most appropriate care.

Unpleasant Memories...

I was just a little girl. I have very few memories of my childhood but for some reason I remember this. Maybe it's because I loved my Uncle more than he could ever know or ever will but I remember this.

I was just a little girl. My Uncle Freeland was at our house. I don't know what he was building but he was building something with my dad. They were giving me the little pieces of wood that they didn't need as they cut them off the larger pieces.

I sat there building with them for a very long time. I was so happy. The wood was fun but the happiness came because I felt loved and important. That didn't happen often after that day but for that moment in time it was there. That moment was the best day of my youth. Why? Because I remember it and because my whole family was there.

As I got older, most of the time it was just my mother and I. I was so enamoured of her. I wanted to be her. I wanted to look like her. I thought she was smart and beautiful and perfect. In those early years she was amazing at letting me keep that magic of childhood.

I'm sure that my mom dated while I was little but she was always good about keeping it out of sight. At least until she met Ed. He came in and I remember very little about it but he became my first step-father.

I didn't understand it back then. I didn't understand how my mother nor I could see what he really was. I didn't understand how we could trust someone like him. I didn't understand how we could have loved him.

At first I was excited. I was so happy to have him come into our lives. I thought he would make my mom happy and not so lonely. At first he did, at least I thought he did. I was little. I didn't understand.

I don't remember much but I remember hiding in my closet, listening to them through my wall. Ed screaming at my mother. Ed making her feel small and worthless. I remember this more than just once. I remember going out in the fall, no shoes because I was afraid, and running out to hide with my horse in the horse stall. He found me. He was furious. He carried me inside but I don't remember what happened next.

I remember being afraid all the time toward the end. I don't remember when he actually left but I know he finally did. I was happy. I thought it was over. It wasn't. I was still afraid all the time. That was the year my panic attacks started, the nightmares overtook me, and my first bout with stomach issues began. I was about 9 years old.

I don't remember much but I do remember that Ed didn't give up easy. He showed up at our house a few times to make threats. I was home after school alone one day with my friend Ann and Ed showed up. We locked the doors and hid but he knew I was there. He made threats. He told me he would shoot me if I didn't let him in. I was so afraid. We just kept hiding and hoping he'd go away, he did.

Looking back I think that was a major turning point for me. I don't think I realized it until now but before that I was fearless and I loved everyone in my life. I loved my classmates. I loved myself. I loved my mother. I loved life. After that I was afraid all the time. I hated that fear. That hate turned out onto those I once loved and inward onto myself.

I was just a little girl. I didn't understand abuse. I didn't understand fear. I didn't understand that some people could be so cruel. I learned in a hurry and I became afraid. I became aware of cruelty and I began to see it everywhere.

I think it changed my mother too. She became more protective. She became more concerned about things that often put us at odds. She worried more or maybe I just saw it more. And I think she became afraid.

The older I got, the further apart my mother and I seemed to get. I was powerless and misunderstood at school. I was depressed and not very nice at home. I treated my mother with disrespect and what probably seemed like cruelty on occasion. I was just a kid. I didn't realize her pain, her fear, or her love.

Now that I'm older and I've been through my own forms of hell and difficulties, I look back and realize that she did the best she could. She was more patient with me than I myself might have been.