For My Love, A Letter From Wife WIth Chronic Illness

I wanted to write a letter to each person that my illness affects in my life, and it will take me some time to get them all done I am sure, but I am going to start with the one person that my sickness affects the most (besides me, of course), my husband. I plan on making it fairly universal so that if anybody else would like to use it, please be my guest. You are more than welcome to copy and paste, or print it off for your significant other, or change it up how ever you want. I would appreciate some credit of course, if applicable.

To my significant other,

I call you my significant other because you ARE the most significant person in my life. My life is intertwined with yours in every way possible and that, to me, is a huge blessing. I do not want to even imagine how my life would be without you. I do, however, sometimes wonder how your life would be without me in it. I say this because I frantically worry about how much better off you would be if you didn't have the difficult task of having a wife with chronic illness. Maybe things would be much more simple for you, maybe not. Not only does my illness affect me in a profound way, I know it affects you too, and I wish I could change that.

Of course you say "I took a vow, in sickness or in health." You should know that it means more to me than anything that even with a sick wife, you are sticking it out with me. You are my partner, my soul, my lover, confidant, and my shoulder to lean on. I know you will always be there for me despite what is "wrong" with me, as I would for you. But, it does not make me feel any less guilty for putting you through it. You deserve the best of the best, and I will never be able to give that to you. Sometimes, knowing this, I draw back. I put my walls up, and close you out. I realize that this does not help, but it is hard not to when I feel like I do not deserve the love that you give me.

With ongoing, ever changing, and extremely unpredictable pain, exhaustion, and other symptoms it is difficult to keep my mood stabilized. This is probably one of the most difficult things for you. One day I can be in a fine mood and be able to participate in just about anything, and the next I am a dark storm cloud about to let the lightning strike at any moment. You should know that I do try my best to keep my mood level and I also try to not let it affect anyone else, but I know it does. I am sorry for that. I do my best. When I am having a negative mood, I attempt to stay quiet and to myself so that it doesn't rub off on you or anyone else. It has to be hard coming home and wondering Hmmm, I wonder what kind of mood my wife is in today?. I am working on that and I am sorry, I'll get there.

I know you also have a hard time when I do not talk to you about my illness. I choose not to talk about it so that I do not bring anyone down with me. I do not want you to think I am just whining to you or wanting you to feel bad for me. If something is bugging me bad enough to say something about it, then it is really bad. Besides, when is there a "good" time to bring it up? It affects every waking moment of my life, and every plan or decision that I make, so I think about it often. Sometimes, I get so lost in trying to figure out what is going on with my body that I forget to include you in it. It is me, you, and this illness now, and I have to start remembering that you are involved too. I want to include you, I just don't know how. So, please if you want to know something about it, ask. If you want to know how I am felling, ask. If you want me to describe things to you or you are confused about something, ask. Seriously, ask me questions! Not only does it make me feel more comfortable talking about it, it also shows me that you care and you want to be included.

Working full time with an illness such as this is quite a feat. I am one of the 25% of people with fibromyalgia that still can work. I am damn lucky to still be working, and to be frankly honest, I do not know how much longer I will be able to hold a full time job. I love working, and I would feel pretty useless without a career. In order to keep my career going, I need your help. Stresses at work do not usually determine if I am having a "bad" or "good" day. My level of pain is what determines if my day is good or bad. A bad day, or a painful day, at work is akin to a full day of elk hunting. I am so beat down and tired by the end of my work day that I literally have barely enough energy to do anything else. Yet, I try my best to go pick up our boy, make dinner, clean up the house, do bath and pajamas, and bedtime. I never have to do all of this myself because you are there for me, always. You never not help. You are so good about helping out around the house that I feel too guilt to ask for any more help. But, babe, there are some days that I simply cannot do it without putting myself into a worsening flare that will leave me near useless for many more days. Those days, you might have to do more than me, but on my good days, I will always make up for it.

I always worry that I keep you from doing the things you love most. I know you imagined us being that couple that hikes mountains together, hunts together, moves massive boulders together. "The couple that hunts together, stays together." I love going with you. I love our time out in the woods hiking, camping, and shooting. There are just times that I cannot participate like I want to. There are times that I may be able to go, but not be very involved. There are times I will not be able to go at all. It just depends on my health at that point in time, but believe me, I want to participate, I want to be there. Please, under no circumstance, let me stop you from going. EVER. I am just as happy at home writing, reading, cleaning (yeah weird, I know), and spending time with the kiddo. I will never use my illness as an excuse to not go because I do not want to go. I will never use my illness as an excuse, period. Know that if I say I cannot handle going, then I really can't.

More often than not, I push myself to do things, go places, that I really shouldn't. I push my body to it's absolute limits just doing normal everyday things that most people would not find difficult at all. I push myself until I can no longer push any longer. I struggle through every single day, and I keep pushing anyways. I push myself into worse health, into flares, because I am too damn stubborn not to. When I have good days, I try to do every single thing that I have been putting off while I was not feeling up to it. I feel good, so I get things done. Then, because I pushed myself too hard on that good day, I receive 5 bad days for that 1 good day. Everything I do has a price and I have not figured out how to balance what I put out with what I have to give yet. I have had this illness for well over 6 years and I still have not figured that part out yet. So, maybe if you could help me find some balance, I might pay more attention to it. Instead of asking if I want to do something (because I will always say yes), maybe ask if I am up for that something. You would be helping me remember to keep some balance.

More than anything I know that this illness hurts you too. I know that it hurts you to see me in pain, and not be able to do anything to help. But, you just being there for me helps immensely. When I am hurting, I use distractions to help me through it. Yes, that means I spend a lot of time on my phone, or on my computer, or reading a book, or plain just pacing around the house. It is a coping mechanism for me, and it does help significantly to distract myself from my vengeful body. Please do not take this as a personal thing because I swear it is not. So, sometimes just keeping me distracted is helpful to me. Sometimes just holding me. Sometimes just letting me cry on your shoulder, and sometimes just sitting quietly with me. No matter what, you being there, that is what helps me the most. You are helping me whether you know it or not. You are the most help I have. You are my anchor. You keep me going strong because you are so strong for me.  I do notice the little things, and the big things, you do. Thank you for everything you do for me and for being here to have and to hold. Forever I am yours.

With love,

Aimee Myles

Speaking Up On Fibromyalgia

Fibromyalgia and chronic pain conditions are awfully lonely ailments to live with. Not many people know that millions of people live in nearly constant pain. It is not common knowledge. In fact, although fibromyalgia has been around for numerous years, it has only been almost fully accepted within the last few years. Most of the time if you were to tell someone that you had fibromyalgia they would look at you like you have 8 heads. So even if it is accepted by the medical community, it is still not a condition that is widely known by everyday people. Of course, once you are diagnosed, your family may become more knowledgeable about it if you are lucky. They might try to do some research and learn the most they can about it, but most won't. Though, in my own opinion, if they truly cared they would make an effort to at least educate themselves about your condition and how it affects you. But, on the other side, it is also our responsibility to help them become more educated about our condition. This is the hard part! There are some resources out there with things you can print off for your family members, but most do not really touch on what it is really like to live with chronic pain. So what can we do? We could make our own pamphlet with all the information we feel is relevant to our situation. We could write a poem or letter to our family members. We could draw what we think chronic pain looks like. We could write a song or prepare some sort of speech. Whatever your talents are focus on that to get you started. If you are good at drawing, start there. Let's create some amazing informational pieces for family members that millions of people could use to help them describe what it is like. Let's raise awareness! If you know of any great resources, please share.

Really, one of the first tasks to tackle after being diagnosed is to talk to your family and friends. This sounds so simple, but yet it is one of the most difficult things to do. I struggle with this every day. One thing we always worry about is that we won't be taken seriously. This usually stems from the years it takes to even get a diagnosis and the years we felt misunderstood and ignored by our doctors, family members, and friends. We could have spent years of our lives being thought of as lazy, crazy, or as hypochondriacs, I know I did. Those were the most difficult years of my life, and I just learned to change the way I relate to people including becoming more closed off about my illness. Besides feeling misunderstood we also don't want to complain to people. When we do talk about it, we assume that the person having to listen to us thinks we are only complaining and whining about our misfortune when really, we just need to vent, to be heard. We worry that we will put extra burden on our loved ones by telling them about it. We don't want to make others worry about us or feel sorry for us, we just want understanding. Mostly, we don't want to hurt people, and we know that the people that love us hurt when they know we are suffering. It isn't easy on them either. Watching the one you love suffer and not being able to do anything to help. I imagine it is a harsh reality for them as well. So, not only does our illness cause us to suffer, but also those around us as well.

If you broke your leg or have some sort of skin condition, there is at least some story behind it or some physical evidence of it being there. People can see it. You have a cast that is visible and often other people have broken something and can relate in some way, or they might even ask about it. It is not like that with an invisible illness. For the most part, nobody has any idea you even have a chronic illness. Nobody is going to ask about something they do not know about. Nobody is going to say, "Oh, how much longer until you are all healed up?" (and if they did, we would probably get a bit bent over the comment). There is no healing of chronic conditions. They are just that, CHRONIC, meaning long-term, FOREVER! It will not go away, and it cannot be cured. Yes, there are things that can help some, but it is something we will live with for the rest of our lives. The pain, the fatigue, the brain fog, the unbearable twitching, and wreathing, and crawling, and stabbing sensations. The bowel irritability, the depression and anxiety spells, the exertion intolerance, the hundreds of symptoms. Those are not going away. In a way, we learn to live this way. We teach ourselves how to ignore the pain and twitching. We learn how to hide our symptoms. We learn how to get around and space out our days. We learn what helps and what doesn't. Honestly, chronic illness is very time consuming. It is amazing how much effort and time goes into trying to make yourself feel just a little bit better. Hours and hours every month spent in doctors' offices, physical therapy, and other therapies. Not to mention the amount of time we spend trying to learn as much as possible about your particular illness. I don't know about you all, but I spend hours learning about all of my illnesses and trying my best to find things that can help me more. I like to be educated about whatever I am dealing with, so much of my time goes into that.

In all reality, it's not like you can strike up a conversation about pain. Nobody really wants to talk about pain or unfortunate situations. It is only in our nature to avoid subjects involving pain and unpleasantness. Besides, trying to talk about our unpleasant symptoms only makes other people feel uncomfortable. We see it, and we really try not to make people feel uncomfortable with us. We feel as if we are dragging our loved ones down with us. This is not something we want to do. Hence the reason we typically just stay quiet about it. There is no sense in making other people awkward and uncomfortable along with us. Why drag others down with us? But, what happens when we avoid talking about our situation for extended periods of time?  Well, we go bat-shit crazy is what happens.

We tend to start secluding ourselves from the outside world for fear of the pain brought upon ourselves and others. We fear pain so much that it controls every waking decision of our lives. We start obsessing on how to make ourselves better. We hide from our friends and family so they don't find out how bad it really is. We fight tooth and nail to make it through the rough times, and we use every bit of energy trying to get well again knowing that it may never happen. We loose ourselves in the midst of our illness.

If we do not find some sort of way to communicate, our illness can and will consume us. So, I suppose that whether or not we are perceived as whining, lazy, hypochondriacs we have got to speak up and speak out. Write a poem, a speech, a letter. Make a blog, a diary, a craft collection. Raise awareness and don't be ashamed. Attend a support group, or create a chronic illness event. Do what makes you happy and allows you to have a voice. Let's stop being ashamed, scared, and secluded. Let's find a cure!

The Rescheduling of HCPs and How it Affects People with Chronic Pain

The DEA's rescheduling of narcotics has affected the chronic pain community in a huge way. It has resulted in only more suffering for those who live with chronic pain. Many patients have lost their access to pain prescriptions all together, and those that were able to keep their prescriptions are now under more scrutiny than ever. Patients that were able to continue their prescriptions after the rescheduling of narcotic medications essentially began being treated as potential criminals. They are often asked to sign contracts by the doctors who prescribe them their medications allowing the doctor to take a urine sample at any time, any day. This is for the same reasons that are for the people on probation and parole; to make sure they are not doing anything they shouldn't. This protects the doctor, and allows the DEA to have control over how much of the prescription medications are given out and watch to see if they are being abused. These contracts typically contain components forbidding the recipient from selling or giving their prescriptions to other people. Something someone in severe pain most likely would never do. They need those medications for themselves and cannot afford to loose them.  The contract may also allow your prescriptions to be counted at any time as well. Under the DEA's restrictions, you may also be subject to less medications for per refill, add needing a physical prescription versus an electronically sent prescription for every single refill. This means that you must visit your doctor every time you need a refill to retrieve a paper prescription. More doctors visits means more money is needed for co-pays, deductibles, and travel. Travel is especially expensive for those who travel to a neighboring city for doctor's visits. This results in time needing to be taken off from work as well. Less pay and more need for income to pay for such a luxury as to have some pain relief. Yet, those of us that cannot even obtain a prescription for various reasons are envious of those that have the chance to even endure that struggle. We would jump through those hoops and endure the extra milestones just to receive such relief.

Unfortunately, these restrictions are not easy on the medical providers either. Often, they feel like they cannot meet their pain patient's needs. If they do prescribe a certain amount of prescription pain medications then they soon become the subject of scrutiny by the DEA. They can have only a certain amount of patients on pain medications (here it is 12) before they start being investigated. Out of the hundreds of patients they see, they must choose the 12 most deserving people, and hope to find some backup form of relief for the others. The problem is, with chronic pain, there is not really any other form of relief. Please realize that your health care provider probably does not agree with these restrictions either. They are only trying to protect themselves and their practice from the DEA, and that is not something we can take personally.

When people in chronic pain do get a pain prescription from their doctor, getting it from the pharmacy is a whole other problem. Often, the pharmacies run out because of the current restrictions. Even if they do not run out, the pharmacists are able to choose who can and who cannot get their prescriptions. People who pick up prescriptions for pain killers from pharmacies often feel like they are under tremendous scrutiny by the pharmacists and others around them.

So, those of us with pain are often left in the sidelines of this "war against narcotics". We have very little access to treatments that we do find helpful. Some people may benefit slightly from their antidepressant/diet/exercise regimen, but most do not. Although antidepressants are helpful for those that do exhibit depressive symptoms, but what about those who don't? I was not depressed before I was started on a whole array of different antidepressants. After taking them for some time, I became very depressed. They are not meant to be used for people who are not depressed to begin with because they tend to have the opposite effect. I have tried the two FDA approved medications for fibromyalgia with little to no improvement. I take my vitamins and minerals. I take my muscle relaxers. I use essential oils. I have regular chiropractic adjustments. I do stretches. I exercise regularly. I do acupuncture. I eat well. I fill my body with mostly healthy things. I have detoxed. I research regularly and try new things ALL THE TIME. I have tried nearly every trick in the book to find some sort of relief, but so far not a damn thing has made enough of a difference for me to continue it. The doctor has no idea what to do with me, my family has no idea what to do with me, I have no idea what to do with me. I feel like I have reached to end of my rope, and that nothing can help me. I will keep trying of course, but I am running out of things to try.

Now, I kind of feel like there are two solutions to help alleviate some of the pain, yet they are both illegal. I could go out and buy a pain prescription from somebody, but for many reasons, it is a bad idea. I have thought about it many of times in the past, and still do. I mean if I cannot rely on my doctor, or the DEA, to at least help me make it through the day without excruciating pain, then maybe I should just help myself. Here are the problems with that: I could wind up in the legal system, and trust me, I have met plenty of people that have wound up in the system for 6 plus years for a pill or two. If it is not your prescription, it is a big deal. Very unwise, but doable. Imagine the price of living that way though, both for the money cost, and for the chance you were caught. That is jail time, and if you are lucky, pre-release, then probation for many years after that. Nothing I am interested in. If I beg my doctor then I will only look like a drug seeker. But, really, I am only seeking some relief! My age is an obstacle, I mean who would give a pain killer script to a healthy "looking" 24 year old? I just want something to help!

Another option is marijuana. I do use marijuana for my symptoms. No I do not just lounge around my house eating cookies, no I am not a "stoner", nor do I abuse the herb. But, to be able to find something that could bring some relief with it is downright wonderful. It helps, not tremendously, but it makes a noticeable difference in the amount I can accomplish with it versus what I can without. It allows me to complete my chores around the house, cook meals, and everyday tasks that need doing. I do not want to sit around when I am using it, I want to get things done because I feel well enough to do them, or at least push my way through them. Marijuana allows me to do that. Problem with this is, it is not a medication that I can take at work. So, work becomes the most painful and difficult part of my day, everyday. 

The troubling part is, my marijuana use is illegal. It is not legal in my state except for medical reasons. But, do not have my card because of the cost, criticism, and paper trails that come along with having one. My doctor also has not approved of the idea, so I haven't tried very hard to get one. Because of the inability to receive prescription pain killers, I have had to illegally obtain something that will help. I do not want to be a criminal, really, but I felt like I don't have much other choice at this point. Ah, thanks DEA! Congratulations you are creating thousands of criminals. Just so you know.......

Hundreds of thousands of people are left to rot in their pain state with little help from any direction. It is unfortunate being one of them. With no place in the medical system, chronic pain sufferers are kind of like the lonely outcast group with nowhere to turn. I don't know about you all, but I feel very let down and neglected by the entire health care system, the DEA, and the political groups that get to decide our fates.

In the long run, I am going to assume that it is only going to take a few more years for the legalization of marijuana, and I cannot wait for the day that I can medicate my illness in a legal manor. It is my illness, and I should be able to treat it the way I feel fit.  I am tired of living in pain, and I am tired of being left on the sideline in so many ways.



This is a judgment free zone, so feel free to leave a comment. I would like to hear your opinions, thoughts, ideas, and anything else.

-Aimee

Let's talk about guilt and stuff....

One very difficult thing to live with is guilt. Many people feel guilty for various reasons, some that they can control, some that they can't. Some might have committed a crime, or hurt someone, broke someone's heart, not given enough, needed too much, or just plain feel guilty for being themselves. Guilt is a hard emotion to deal with. If you let go of your guilt, are you letting down the person you feel guilty for hurting? This scenario often only creates more guilt in the person trying to let it go. Yet, if you hold on to your guilt, the only person you are hurting is yourself. Some, such as myself, would rather hold on to the guilt themselves rather than hurt the people they are trying to protect. Guilt comes in many shapes and forms. Some might drowned their guilt in alcohol, some might hide their guilt, yet others might communicate their guilt, or become dependent on things to distract them from it. Everybody faces their guilt a different way, some healthy, some not so healthy.

I live with a great deal of guilt. There I said it, I FEEL SO GUILTY!!!! Wow, that felt good. I feel guilty for not being able to live up to expectations. I feel guilty for not being able to keep up with everyday things like a 24-year-old should be able to. I feel it everyday. I feel guilty that I don't have the energy to play with my son more often. For not being able to cook a decent meal every night, or even most nights. For not being able to keep my house clean. For not being able to enjoy hobbies like hiking and hunting. For not being all that I can be for my husband. For not being able to perform at my best at work. For disappointing my mom. For loosing my friends. For being unreliable. I FEEL SO, SO GUILTY.

One of the biggest decisions that I am facing in my life right now is my career. Nearly 8 years ago my mother opened the doors of her first restaurant. At 16 I began to work for her as a server. It was a tiny building next to a highway with only 7 tables and a small rap around bar. Within a year or two we had lines running around the outside of the building. Way too many customers for such a small place, so we found a new place and moved the business. Again, two or three years later we had outgrown another building. Now, our current location is also becoming a bit cramped. I grew up in this business. I have been waiting tables for as long as I could have a job, possibly 9 or 10 years. Now, this place has become my baby. It is my home away from home. I love it, I nurture it, I try my best to make sure that it is the best damn place to go in town, the cleanest place, and the friendliest place. This also means that over the years I have become the general manager, I make about 50 to 60 pies a week, I do all of the advertising, networking, hiring, firing, a lot of the training, organizing, blah, blah, blah. I am also "on the floor" waiting tables 4 days a week as well. I love my job! I mean I love my job when I am not having a flare...... I do a lot. Even for someone who does not have fibromyalgia, I do a lot. It is stressful, and wild, and irritating, and some days I just want to throw up my hands and quit, but I am so emotionally attached to it that this business has become my baby. I do not know what I would do without it. My mother has put up with a lot of my faults over the years, but I always try to make up for it by busting my ass, but sometimes I just simply can't. During the 5 years or so that I had been trying to figure out what the hell went wrong with my body, went to college and got my Associates in Psychology and went on to schooling for Medical Transcription because I knew I would never be able to keep waiting tables and managing a business. I thought that I had MS for well over a year so I thought I was going to have to take a desk job, and I enjoy medical jargon and such so I finished the Medical Transcription course. Then I decided I would never survive a desk job. I like to be up and going. Anyways, I stayed at the restaurant regardless. Now, I'm struggling to keep up at all.

This restaurant could be mine one day, and I dream of the day it is. I am set up for a future that can hopefully be adaptable to my ever changing health. If I could only make it until then. Half the time I honestly feel like I am dying, and that is no joke at all. I am sick, very sick. I am ill, and I have finally come to terms with the fact that I have fibromyalgia. I am draining myself, my health, by doing what I am doing. I am pushing my body far beyond it's limits. It is screaming at me to stop, but I can't.  There is no way that there is not severe damage going on inside my body. I can't stop here. I want to do so much more. I want to be successful, and be happy, and be a great mom, and a great wife! But, this disease is tearing down my dreams. I can't make it long enough to own it, but I cannot qualify for disability because I could technically take a desk job.  I am afraid for my future, and my capabilities. It is hard to make the choice between a career and your health, and that is a decision that a 20-something-year-old should not have to make, ever. That is a decision that I am not ready to make. It not only affects me, but also my family. My husband, my son, and my mom. I always wanted to prove to my mom that I could handle it, and I can, but not without really making myself suffer for it. I dream to be able to eventually own the business and fund my moms retirement account. But, how can I without killing myself in the process? I would feel so much more guilt to have to walk away.

Oh guilt, how you destroy me. I want to be the best wife and the best mom. I have trouble keeping my patience when I am in so much pain. But, no matter how much pain I am in, and no matter how deathly ill I feel, there is still a lot to be done. Dishes have to get done, the family fed, the kid his bath, and the nightly bedtime battle with a 2-year-old. My husband is supportive, he says "if you don't feel like doing things, just don't do them". I love him for understanding, but how the hell are things going to get done then???? He often works late, and is not here to help when at work, so it is up to me to get things done. I can't just not feed the kid because I don't feel well. It doesn't work like that. It is not practical. I feel so guilty when I can't fold the umpteen baskets of clothes that I can't hardly stand it. I do it anyways. I can't stand the dishes piling up, so I do them. The house needs dusting, so I dust. The lawn has to be mowed, so I mow. I just do it. I can't not. Unfortunately, this only results in more BLEEPING pain, and putting myself through all that while in pain only escalates all of the other freaky symptoms. Soon, it spirals out of control. The anxiety and depression start to roll in. The muscles in my arms, face, and legs start to twitch near constantly, then everything goes down hill from there. I have been in this same flare for more than 9 months. This is the longest one I have had so far, and it only seems to be getting worse. I am starting to wonder if I will actually ever come out of it. I am terrified that this is it. I cannot remember when my last "good day" was. I have become so used to feeling like hell that I really do not know what it feels like to be okay. There is so much more than pain in fibromyalgia, but the pain is the absolute worst part about it. I gave birth to my son naturally with no medication, and some days, the pain is comparable to that. At least that pain had an end. I broke my clavicle playing football with friends (which is the accident that triggered my fibromyalgia) and I would so much rather have that pain back than this. That pain also would have had an end if it didn't lead to this crap. But, if you put a person in that much pain for 9 straight months, they are bound to want to do something crazy. Knowing there is no cure, not even a single treatment that has helped only makes your soul bleed. Knowing your friends and family will never understand. Now, that right there is enough to drive a person mad! I sure hope I have the strength to make it through this. I'll keep fighting, because that's just what we do. We are bad asses because we do fight through this crap! And we survive, just with a little less of our soul.


(Side note: People need to realize that servers are actual, breathing, human beings. They have kids, families, aspirations, dreams, and work their tails off to make other people happy. Many servers have college degrees, but can make more money being a server. Also, severs should not be treated as robots, servants, or low-lives. Because servers make their living on tips, they are taxed heavily on those tips. If you go someplace and do not tip your server, you are actually costing them money to wait on you. Please, please, do not be one of those customers that costs me money to wait on.  15-20% is the average tip, but if your server worked hard to make your experience enjoyable, then they probably deserve more. Treat them well, and they will surely make you a priority and make your stay a great one. And even if you do not agree with tipping, at least be respectful and courteous so they don't associate your face with the devil.)