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.
Comment
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.
Comment
This comment has been removed by a blog administrator.
ReplyDeletehave a great day
ReplyDeleteThanks, you too.
Delete