What "Good Days" Mean to People with Chronic Illness/Pain

In some silly ways having a chronic pain condition can be a blessing. I never would have believed this years ago. I mean what is to be thankful for about having an incurable chronic illness? Really though, there are some things that we can be thankful for. Here are a few things that having a chronic pain condition has taught me:

Good days are GREAT! When you live your life day to day not knowing how much pain you are going to be in that day, you tend to get extra excited about good days. A good day for me is a day with low pain levels or other crazy symptoms. You know, those days where you almost feel "normal"? Those days when your symptoms subside enough for you to ENJOY your very existence. You can't help but smile because you feel like you again. You feel like you actually have a personality, like you can just be yourself! These can be ordinary days for every other person around you, and nothing special happens on these days. No promotions, no abnormally nice people, nothing really makes that day special besides just NOT being in an alarming amount of pain. It is almost like you feel like a superhero, a ninja, on these days! And God, does it feel good!

It is funny really. Good days such as those are hard to come by, but when they do you try your best to make sure you get the most of it. I do not even want to go to sleep on those days because of the fear of loosing it. Loosing the freedom to be normal. To be like everyone else. To just have a day to be you again. I fear for not having any more good days because it has been so long, but it is something to hope for. We hope for good days and we pray that they will stick around for just a bit longer.

On those good days, we hold our children longer, we give them more hugs and kisses, and we get to play with them like we wish we could every other day. We spend more time with our loved ones and we get the opportunity to cherish them a little bit more because it is a good day. We spend less time fixated on our war-ridden bodies and have more energy for everyday things. You wouldn't think you would be excited to get the dishes done until you have a chronic illness that messes with your ability to do them. On good days I find joy in cooking, and cleaning, and working, and just walking without a limp. These everyday things would seem senseless to be so excited over to most people, but I know that other people living in chronic pain will understand exactly what I am talking about.

I guess what I am trying to get at here is that I may not like my illnesses, if fact I hate them all with a passion, but I do not hate what they have taught me. They have taught me to love a little deeper, to enjoy life despite my circumstances, and to find excitement in everyday things. For that, I am so thankful.

Who is the one person you would meet if you could?

If there is one person that you could meet, ignoring all factors that would prevent such a meeting, who would you want to meet?

If I could only spend an hour or two with Morgan Freeman, I would be one happy camper. Of course I have never met the man personally, nor will I ever, but his entire demeanor is just magnetic really. I imagine that people just levitate towards him and just want to be around him. Even if he were not famous I imagine it would still be just like that.

I imagine a conversation with Morgan Freeman being scientific and pretty educational. He seems so wise and knowledgeable, and just all around fatherly. To talk about space, philosophy, history, medical technology, and everything in between with Morgan Freeman is kind of a dream of mine.

Now, the fact that he also lives with fibromyalgia just adds to the desire to have a conversation with him. He is really the only widely known famous person to admit to having fibromyalgia. It is unfortunate, but I am happy that he continues to live a fulfilling live despite his illness. It is heroic really.

If you could meet any person, or spend more time with someone, who would you choose and why?

Chinese Water Torture? Chronic Illness? What's The Difference?

Spring time is rolling around, and that is the best possible news for me. It seems like every winter I get trapped in an awful cycle of flares. The most recent flare: 9 months and going strong. That is far too long to be experiencing pain on a daily basis. That is enough to drive even the most level headed person a little mad. It is like Chinese Water Torture:

Chinese Water Torture Device





Living with chronic pain is just like that. I mean these devices were honestly meant to drive people mad, wreathing, insanely, bonkers. It starts with only small drops of water. One drop, then two drops, then three, then four...... and on, and on the cycle continues. Drip, Drop, Drip, Drop, Drip, Drop........

In the beginning you think to yourself: This is no big deal, I can handle this. It's ONLY water. I am alive and kicking, and that is all that matters. You would continue thinking this for a long while. I mean really, this can't be so bad. Drip, Drop, Drip, Drop, Drip.........

After awhile you would begin to find it perpetually annoying having water dripped over, and over on your forehead. Drip, Drop.... You would find it more and more difficult to keep your mind off of the nagging, aching spot where the water continues to weep on your forehead. The water droplets are collecting now, on your cheeks, in your ears, and it has soaked your shirt. You start to shiver, and now realize that you are going to be cold, wet, and continually annoyed by the drizzle still impacting that same nagging spot for a very long time. Drip, Drop, Drip, Drop..........

This is okay. I can make it. It is still only water. I would never let something like the dripping of water get me down. I am strong, and I will make it.

Days pass by, and one by one you make it through each day. Friends and family stop by to make conversation. Simple conversations are enough for you. You are just happy to have some company. You try your best to not focus on the torture inflicted upon you. Drip, drop, drip..... The pure anger that you are experiencing by now is cutting at you. You want to do something, anything, to get out of the situation that you are now trapped in for an unknowing amount of time. Maybe forever. It could be forever. Drip, Drop, Drip, Drop, Drip.......You cannot let this thought go: What if this is my life forever? Can I really handle this until the end of my time? Am I going to make it through this? You are so wreathing angry that you want to just come unglued! You hang in there, letting the days continually pass by you. You loose count of how many suns and moons you have watched pass over you.

Drip, Drop, Drip....... You let go of being angry at your situation because, after all, you must have done something for this to be your fate. You know that there is nothing you can do to get out of having to endure many, many, many more moons of this trickle that now feels like it is plummeting into your head at high speeds. It now feels as if the steady Drip, Drop, Drip of water has been replaced with pebbles. Plip, Plop, Plip, Plop, Plip, Plop..... Sadness replaces your anger as you realize this is only going to get worse, and worse for you.

Oh, I have got to catch a break somehow. Maybe if I just pretend it isn't there it will just go away. Maybe I can pray my way out. Maybe I can do something. Maybe I can escape this, somehow.....

The Plip, Plop, Plip, Plopping goes on and on, never-ending. It has become unbearably excruciating by this point, and you cannot keep your thoughts from deceiving you. I should just call this quits. I cannot take it anymore! Someone, please, untie me!!!! Nobody can help you. They fear if they help you the DEA (Distress Enforcement Agency) will strike them down. The spot on your forehead has begun to become concaved as your skull bone begins to give way to the Plip, Plop, Drip, Drop of the water. The pain that you feel by this point is beyond agonizing. Every single Plip, Plop makes a thunderous sound resonate between your temples. Your head now feels like it has grown to double it's size but still looks normal. You cannot see the inflammation and pain that is piercing through your entire head.

You haven't slept completely in months. You can sometimes nod off and rest for a little bit of time. You have gotten so used to the Drip, Dropping that impacts your face that you now find yourself being able to keep your mind off of it long enough to get some rest. Sure enough, it never lasts very long. One particularly heavy droplet always seems to wake you up much too soon. Ugh!

You find yourself beginning to let the sadness overtake you. There is no way out of this mess. There is nothing that can save you. I just want 30 seconds of relief, that is all I ask for! 30 Seconds! Please, give me 30 damn seconds of not feeling this water drip on my forehead. I will do ANYTHING! By this point you are screaming in pain. You are praying to every God you can think of to ask for relief. You are begging, pleading, and seriously fearing going mad. The Distress Enforcement Agency patrol the area to be absolutely sure that passersby do not attempt to deflect to some of the drops from your reddening skull.

I can't let myself go mad! I can't let that happen. I told myself this was nothing. I have got to make it through this. I will find a way.

You try to distract yourself by any means possible. You focus your attention on every thought that you capture and cling to it for dear life. You think of your family and how it must pain them to see you locked in that state. You thank your God that they cannot see the true amount of torment that you are experiencing. After all, all they see is a simple drop of water leaking out in a seemingly nonspecific way. While you are contemplating scalping yourself for hopes that it will relieve some of the pain, they only see Drip, Drop, Drip, Drip, Drop, Drip, Drop, Drip, Drip, Drop...... They hardly even notice the droplets escaping from the reservoir. After awhile they begin to wonder why on Earth you are letting little drops of water get to you so much. Plip, Plop, Plip....  They visit less and less often, sure that you are over exaggerating how utterly painful a few drops of water can be.

Slowly, but surely you begin to notice the worst of thoughts trafficking your mind. You loose any sense of emotion that you once felt. But, you keep on going. Not because you can, but only because you have to. You have no other choice. Plip, Plop, Drip, Drop.....

Years pass by. Your not even sure how many. Everyday is the same thing. Drip, Drop.... Every moment is the same thing. Pain, grief, and it goes on.

The only choice you have any more is to change yourself. You begin to focus only on the good thoughts and let them linger longer. You clutch to them and nurture them like they were your only child. You feed those positive thoughts until those are the only thoughts you can think. You start to find a melody in the pattern of the water droplets Drip, Plop, Plop, Drip, Plop, Plippity, Plop... You learn to ignore negative thoughts, and thrive on the positive ones. Suddenly, life kind of seems worth living even whilst the dropping and plopping continues on the outskirts.

Of course, living in those circumstances warrants for some mental breakdowns, periods of grievance, and many days spent being abnormally pissed off. You can carry some hope knowing that someday you just might be let go. Time continues on, and you get through each day One At A Time.

Chinese Water Torture; It Sure Is A Lot Like Chronic Illness

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