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
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