Fibro... Fear... Frustration!

It's hard not to be afraid when you have a disease like Fibromyalgia. It's a disease associated with stress and anxiety but it also can cause real anxiety. There are often so many symptoms, pains, and issues that crop up that could be anything. These issues vary and move and can be anywhere in the body. They could be a part of the fibromyalgia or they could be a symptom of something else, something more serious. Most times it's very difficult to tell the difference even for a medical professional.

Even our doctors often give up on us and stop testing to find out what is causing our new symptom or pain. They use phrases like "it's just a part of your fibro" and "nothing to worry about", but that isn't enough. It makes us feel forgotten and like we don't matter. So we go and do the research on our own and worry.

Sometimes these care providers are correct in their belief that it is simply a passing phase of the fibro, but other times there can actually be something new going on in our bodies that they are missing because they are dismissing our worries.

My husband gets a bit frustrated with me on occasion because I do my own research online. He worries that I'm going to find things to worry about that aren't within the realm of reality. He says often "this is why doctors hate the internet". But honestly someone has to do the research. If I could trust the doctors, I wouldn't have to look stuff up on my own. I've done far less of my own research lately unless it is simply to determine what certain test results might mean for me or what the next step might be, because my current doctor is much better about being vigilant with testing.

I am fully aware that trying to diagnose someone solely from a description of symptoms is not easy. Tests and specialists are needed to find the answers we need. I'm not looking for an answer online, simply possibilities.

There comes a point in chronic illness where one has to take some responsibility for their own health and care. Even with a doctor you trust, one needs to be aware of their own body and their options for care. One needs to be aware of the possibilities that might need further examination. When you have a chronic illness you cannot expect your doctor to know everything about it or you. You are still the person who knows your body best. You know if something is out of sorts.

Every pain doesn't mean something new or serious. Each muscle swelling doesn't mean a need for fear or concern. However, there are moments when a pain remains longer than it should. There are times when a symptoms begin to combine into something that does become concerning. In those moments we feel fear. Whether it makes sense or not, we become afraid.

When you live with chronic illness there is always fear. There is fear that you'll get worse, fear that you'll be in such terrible pain forever, fear that you won't be able to do this or that, there is always fear associated with a chronic illness. It is a fear that is difficult to explain to someone who hasn't experienced a similar illness but it is very real.

It is so easy for it to be so much more than this though. New pains bring new concerns. Symptoms that we cannot explain or have not had in the past make us wonder what more we might have to endure. And then when our doctor or doctors can't find an answer for us that makes sense our fear often turns to panic and frustration.

Then at some point you let it go. You don't give up but maybe you find you have to accept what the doctors are telling you. Sometimes they are actually right. It's the times when they aren't, when your fear was correct, when it takes so much longer to find the real culprit hiding in your body, that make you angry.

I am so thankful that currently I have a doctor who insists that I see specialists and have testing and that I don't become complacent in the belief that it's all "just my fibro". She has never uttered those words. She is ever vigilant and refuses to let some sneaky illness hide inside my fibro until it's too late. Of course sometimes I fear that I don't always notice symptoms in time because I've been trained to think it's "just the fibro".

Chronic illness and fear so often go hand in hand. I know for me this is true. When you live a life filled with so much physical pain and emotional strain, I'm not sure how you can avoid the fear. So please remember that when you are talking to your friend or loved one who has a chronic illness.

Don't dismiss their symptoms or their fear because it seems like they always have new pains or new worries. It is all very real for them and just because there is always pain doesn't mean that they are wrong to be worried for their own health. Sometimes we are the only ones that are paying enough attention to catch that one time that it is serious. So don't dismiss us or criticize us for being aware of our own bodies enough to know when we need care. Don't diminish the value of our opinion simply because fear is a natural part of chronic illness.

The Cycle.....

It's really hard to explain how chronic illnesses and pain can make you angry. Living with chronic illness is like living in a constant state of trial and error. It means constantly going through a cycle of struggle, learning and acceptance. Sometimes we cycle through it quickly and other times we get stuck in certain stages for an extended period of time.

It almost always starts with some increase in pain, progression in the illness, or new diagnosis. The first thing is denial. You believe or hope that if you just stay still enough for long enough the pain will decrease. You think maybe the new symptom or illness will go away or at least become tolerable.

Days, weeks, or months pass and this stillness doesn't work. The pain gets worse. The illness doesn't fade. That's when the depression sets in. It's a feeling of hopelessness. We cannot 'fix' ourselves. The doctors cannot seem to help us. Now, because of the lessened activity levels, we have made the situation worse because we cannot even do as much as before. The self disappointment, aggravation and depression grabs a hold of us and drags us into a deep dark hole.

Again time passes. For some of us the depression remains longer than for others. Some seem to get lost in the darkness and don't know how to crawl out of it. Some don't want to because they cannot find the strength or will to fight anymore. And life for someone with chronic illness IS a fight, almost a constant one.

Those who climb up out of the depression climb straight up into the next stage, which is anger. We are disappointed in ourselves but instead of the continued hopelessness it turns into fury. We are angry at our bodies. We are angry with our own attitude. We are angry that we allowed ourselves to get so sad and immobile. We are angry that nobody can help us and that we have to live in this way. That anger can turn both inward and outward. When it turns inward we get emotional and withdrawn. When it turns outward we can be snappy, argumentative, and even cruel. Even when we are aware of the anger issues they can be difficult to control.

Just as with each stage this can last for any period of time. Getting through anger is just as difficult as getting through any other stage and often even more difficult because sometimes it actually feels good to be angry. It feels right to be angry.

Eventually you can move past anger. Beyond anger is shame and guilt. You feel shame for the actions you took while in depression and anger. You feel guilt because most times you feel that in some way you have let others down, either because of the other stages or because of your illness itself. Guilt is probably the worst of the stages because this is where you hit a choice. You can make peace with yourself and your illness and move into acceptance, or you can get so caught up in your own guilt that you get drawn back into the whole cycle once more.

If you manage to make peace and find acceptance, you also find some happiness. The illness still exists, the pain still persists, but in accepting it all you can find a positive way to move forward. This is the time when you can find ways to improve your health and work toward finding new ways to live your life. In this stage you have accepted that your life has once again changed and there may be new limits you have to adjust to. It is in this stage that we learn to adjust and we find a time of peace and happiness with ourselves.

Something else we all have to learn to accept is that this often does not last. Though acceptance and peace tends to remain longer than any of the other stages you have experienced, a new challenge inevitably appears and we will go through one or more stages in the cycle once more. The bigger or more painful the challenge, the more stages we will have to fight through.

My last period of peace and acceptance lasted for the better part of 5 years with only minor visitations into anger or disappointment. I was fortunate that my body was co-operative with all the life changes we had gone through. Then, out of nowhere, my body developed a lot of new symptoms and illnesses that I had not been dealing with before. I crashed into the first stage, believing it was only a minor flare. It wasn't. Right now, I'm currently in that very angry stage but I'm aware of it and I hope to climb up out of it as quickly as I can.

Not every person with chronic illness goes through these stages in this order but they will eventually experience some variation of this. Some people do it so naturally and rapidly that it's almost effortless for them. Most of us struggle through each and every stage. A few get stuck or lost in one stage along the way and cannot seem to get past it. And some, like me, seem to experience several stages at once. I believe that awareness of the fact that there is something beyond the stage you might be facing right now can help you to fight through it.

Right now I'm so angry. I'm angry that I'm ill. I'm angry that I have so many illnesses in this one tiny little body. I'm angry that I can't live a more normal life. I'm angry that I'm in SO much pain ALL the time. I'm angry that I can't always be the wife that I want to be. I'm angry that I can't go out with a friend and just enjoy the day because of pain and exhaustion. I'm angry that most people cannot understand what I'm going through. I'm angry that the doctors can't help me. I'm angry that I'm angry!

For me, writing helps. It's therapeutic. It's a way to vent and allow myself to say things that I can't seem to express without this many words to back it up. I hope, or maybe I pretend, that my writing will help someone else who is going through this or that it will help another to understand them better. It's my outlet. I think everyone should have some kind of constructive outlet that might help them to get through some of these stages. Arts, crafts, writing, gaming, or whatever helps you to vent and get your emotional pain out.

I don't like all these stages and moods that living with this pain causes. I don't like being depressed or angry. However, I realize that to reach a real period of happiness they are necessary. I can handle them to get to that amazing time of peace within myself and acceptance of my life. I long for those moments of pure happiness and freedom, for it is very freeing to reach that final stage. And though the unpleasant stages might find me again at some moment in my future, they do not hold me in fear because I am so grateful within my peace that thoughts of future struggle cannot disrupt my joy.

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.