Saturday, July 8, 2017

Letter of pain

I sent this letter to 10 people in my life and one of them told me it inspired her to talk to her family about her pain. I am putting it on the blog hoping it may help someone in some way. Blessings

This is an open letter to the people in my life that mean the most to me. I am sharing information with you so that our relationship can grow. I am going to be real and make myself vulnerable because our relationship is important to me. I have many ailments but the hardest thing I have to deal with is chronic pain. I want to explain to you for the sole purpose of understanding what I go through.

Dealing with chronic pain is all about energy, the more pain I am in, the more energy my body sucks up to deal with it. Pain is like an energy vacuum. So when I am dealing with a lot of pain, I am left feeling as exhausted as if I ran a marathon that day, the day before and every day. When I am short or blunt with you it is because of this. I do not intend to sound callous or to hurt you. I simply do not have the energy for small talk or subtleties sometimes. I am so sorry if I have hurt you. Pain is an evil, insidious thing. It destroys everything good in life. It covers me like a black fog sometimes. I find the higher the pain level, the less of me I have to offer.

The main sources of my pain ironically may have nothing to do with my CMT disease. When you’ve got the flu, you probably feel miserable with it, every joint and muscle aches and you can barely lift yourself to bed. That is how the fibromyalgia pain is for me. I’ve been sick like that for years, not every day but more often now than ever. My hip pain is sharp like a knife and not limited to my hip. It affects my back and leg also. Hopefully that will all be corrected with surgery and PT. My ankle pain is from my CMT deformed foot and the surgery failure to correct it. Honestly if they would just take it I off I would be able to do so much more with a prosthesis than I ever did with the foot! And the ankle pain would be a distant memory. We have more mercy for animals on this planet than we do for people. If I were a wild animal surely I would have chewed my own leg off long before now.

I do not want to be miserable all of the time; in fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy”! I am merely coping. I am sounding happy and trying to look normal. Just because I manage a smile for you doesn’t mean I didn’t spend my morning in tears until the medicines kick in. Some days my feet are on fire and other days I have no feeling at all, I can’t even feel when they touch the ground. My muscles scream in pain and other days I feel like a rag doll. Of course I try to think positively but my CMT will likely never get better, I am hoping my pain can be better controlled. My doctors give me 15 pain pills a month. I manage the rest with Tylenol and anti-inflammatory around the clock . I also take anti-depressants that affect nerve pain and an anti-seizure drug that makes me dumb and lose my ability to communicate well.

When my life is being so devastatingly altered by chronic pain and illness, with not a

single facet untouched the support I receive from you my friends and family, becomes all the more essential. But, one of the many ironies of a life with chronic pain is that at the very time I need the love and support those relationships are so often challenged and affected by the same cause of that need. I cancel plans or don’t take phone calls because I hate having pain as an excuse. Recently however, a doctor told me only super heroes can take the kind of pain I live with. I don’t want to be a super hero. I just want a simple life. I want my friends back. I want to not feel like a burden emotionally to the people closest to me. I want to look forward to things in life rather than existing on memories.

Friendships and connections with family can make the difference between coping or finding myself feeling entirely misunderstood, isolated in my pain, even judged by some for it. I have done us all a great injustice by keeping quiet in the moment. In doing so I am passing up the possibility of receiving much-needed support, emotional and practical and maybe a little compassion. And you are missing out on why I seem so distant or preoccupied, It isn’t you, it’s the pain.

 I am not the person I once was or the person I want to be because of pain.

I have become short tempered, impatient, easily annoyed and sharp tongued. I may have hurt you never intending to. I have struggled with purpose for my life or more honestly a reason to withstand all of this pain and there isn’t one. Maybe it is a fruit of the Spirit to “endure affliction” but I do not think God is behind this. Sometimes I am bitter towards your “problems” wishing I had them instead of my own. But I know all struggles are hard and we don’t get to pick from a menu which ones we think we can endure.

I challenge or push you sometimes to live your life more fully because I know how awful it will be, when you have an illness or physical pain. So live it now, do that one thing now. Do the thing you won’t be able to do when illness or injury strike. Yes I feel an urgency to tell you this because life happens too quickly and living now in the moment, to it’s fullest is so important. You will never make enough money or rise high enough in your career to make up for what you could be doing with your life. Eventually everyone gets stuff but most people would never, ever, expect to have to live with daily pain.

 One of the greatest obstacles I have is not with my body but in relationships. Please don’t give up on me. I know that fun, sweet, loving, nurturing, whimsical girl is still in here she is fighting for a better life and one that hopefully includes you. I will try to be more patient and listen well, I am sorry I haven’t been. One way to make this work would be my telling you what pain level I’m in- 1 being little to none and 10 being the worst pain. So if you ask and I say 4 know that it is a pretty good day. An 8 or above I am not much good for anything.

The lessons of living in pain run deep, and “even the darkest times can be illuminated by the slenderest light.” * Prayer, music, movies, the ocean are all distractions that carry me. Cards, emails, and face book can distract me enough to get through a hard night. Sometimes you may see my focusing on you as intrusive or obsessive. It is not meant to be. It is keeping me alive. Your hopes and dreams are also mine. They are in my prayers for you and in my thoughts. I love hearing from you as often as possible. I have good days too and I really want to share them with you.

My faith and willingness to obey and serve God are what keep me here in this life. You are one of the reasons I smile. You are important to me. I love you so much and want to continue a life with you in it. Please let me hear your thoughts or questions. I am open and listening.

* Fibromyalgia facebook support group

Lord help us to endure all that we have. Amen 

#I wanted to update this post. Of the 10 people I sent this to only 4 responded. I think Pain is a hard subject for people especially people who care about you.  I understand the lack of response. It is frustrating but life is at times. It was important for me to say my truth. Maybe that is the lesson.