An Open (loving) Letter

 

Originally written 2008.

Re-posted 08.15.2013 by request for Wendy my Wingnut Friend )

* A hopeful loving letter to those who are not living with Intractable Pain/Chronic Pain and have no idea what it is like. i.e. Giant Cell Response, Fibromyalgia, Lupus, Arthritis and so many others.

tolerance400

Dear Family and Friends,

I have been hoping for years that you would all be able to understand the over-lapping illnesses I have as a result of medical nightmare. A life lived with chronic health issues, chronic pain and fatigue. Maybe even along with myself you might help advocate for more awareness, research and more education.

It can start here. It can start with just you & me.

Though I have overlapping diagnoses I will use the one diagnosis and condition  of Fibromyalgia as my basis of reference because it is more commonly heard about, but please understand what I write here can be said for a number of diagnosis/diseases. This is more about how I navigate my life and I’m hoping you will have a clearer picture of how and why. Fibromyalgia: This diagnosis, this explanation for the chronic wide-spread pain, fatigue and hyper-sensitivities isn’t all in my head, and it isn’t contagious

Is it terminal? Nobody I’m aware of ever died just from Fibromyalgia alone (though they might have wished they could on really awful days)  There must be something said about the school of reality that some people can and do die from mismanaged severe chronic Intractable Pain. If you want to read articles or books about Fibromyalgia and/or Chronic intractable I can share with you some that I think are fabulous.

Learning about this is definitely a process.

The first step in this process is for you to believe that there is an illness called Fibromyalgia. And that I have it. I know that might baffle some people that I suggest that some don’t believe it. It’s true that most of you do, but there are still some doubting Thomas’ out there. This is for you:

Fibromyalgia is a high maintenance condition with lots of different kinds of symptoms. Too many to discuss here.There’s no way to just take a pill to make it go away, even for a little while. No way to exercise it away. I have tried. Sometimes a certain medication can make some of my symptoms more bearable. Sometimes I can have an adverse hyper sensitivity to a drug and that can cause a whole new set of issues. Other times I may take a lot of medication and still won’t feel any better.That’s just the way it goes. I can’t control how often I feel good or when it is I’m going to feel terrible. I do what I know works, I can have really awesome good days, even months at a time. Today after close to 30 years of learning how I manage it, but there are days it wins.

Lots of well-meaning friends cut new drugs advertisements out of magazines for me,  and I do appreciate the thoughts, but I look at the list of side effects and the few symptoms they may help to make my choices. No matter how happy the people in the pictures look, there’s still no miracle drug available. Not for me. Not for most people living with CP/IP, regardless of its origins.

If I am functioning normally for me, I am having a great day. I may have saved up for it.This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. As I said I can have good days, several good days, weeks, months, and even a few good years. But a good morning can suddenly turn into a terrible afternoon. I get this feeling like someone has suddenly pulled out the plug to my energy source and all my energy has just run out of my body. Think the Energizer Bunny who has suddenly wound down. I often refer to feeling like I have been hit by a Mack Truck when my pain levels spike beyond any kind of relief I am able to access.

I might get more irritable before these flares, suddenly get more sensitive to noise, or just collapse from deadening fatigue and frightening pain. Weather changes can have a big effect on how I feel. Temperature extremes can have an effect. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this may be likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and for this I am sorry. This may be one of the hardest things for me to contend with. The sadness I feel for what my illnesses do to those around me is more than I can easily describe, or often bare. I am no longer that fun-loving person — and it hurts me that I am no longer who I once was.

Fibromyalgiacs have a different kind of pain that is hard to treat. It is not caused by inflammation like from an injury. It is believed that it comes from the central nervous system in our brain, short circuiting. But even in 2008 little is still known. It is not a constant ache in one place like a broken bone. It moves around the body daily, hourly, and changes in severity and type. Sometimes it is dull, and sometimes it is cramping or prickly. Sometimes it burns. Sometimes its jabbing and excruciating. If Eskimos have a hundred words for snow, Fibromyalgiacs have hundreds words for pain.

Sometimes I just hurt all over like I’ve been beaten up or run over by that Mack Truck. Sometimes I feel too tired to even lift up my head. Besides pain, I have muscle stiffness which is worse in the morning and evenings, mornings being the roughest time for me. Sometimes when I get up out of a chair I feel like I am ninety years old. I’m creaky, and I’m klutzy. I trip over things no one else can see, I fall up stairs. I bump into the person I am walking with. I regularly drop and spill things because my fingers are stiff and my coordination is off.

I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying. I’ll wait until I can no longer if that is where the restroom is if there is no railing.

I am always pushing myself, and sometimes I just push myself too hard. Always trying to make up for what I feel I am lacking in my productivity in life. When I do this, I pay the price. Sometimes I summon the strength to do something special but I will usually have to rest for a few days before & afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to, and sometimes I choose to.

I know it’s hard for you to understand why I can do one thing and not another. It’s important for me that you trust me about this. My limitations like my pain and my other symptoms are invisible, but I know my way around my limitations when present. Another symptom I have is problems with memory and concentration which with Fibromyalgia has been termed Fibro-fog. Short-term memory is the worst,  I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands which I write-up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them or forget the notes. I may be holding a conversation with you one minute just fine and the next look like a deer caught in head lights because I forgot what we were discussing. Don’t worry, this is normal for Fibromyalgia. Most of us are frightened that we are getting Alzheimer’s and new kinds of brain scans have actually documented differences in our brains, albeit thankfully not Alzheimer’s.

I mentioned my sensitivities earlier and I need to talk about them in more detail. It’s more like an intolerance to things.

Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish, some chemicals, fragrances or perfume can give me headaches and make me nauseated. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t so at all. These things make me physically ill.

Sometimes I just need to get away from what ever it is that is causing my reaction. I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or even go home. That’s really all right with me, but I worry about the people I have left behind.

I’m shy about others seeing me in pain and often need to be alone. You may remember me as a light-heated. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I am unable to get to sleep at all, and other times I get really restless sleep, wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours at a time and will still be feel exhausted upon waking. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake.

With FIBROMYALGIA there are other symptoms and health issues- TMJ Disease, migraines, irritable bowel, chronic muscle spasms, restless leg syndrome, pelvic pain, not to mention the problems with cervical spine disease that will take their toll on our friendship.

Some of these symptoms are embarrassing and hard to hear about,  It’s very hard for me too say these thing but because I love you and I want to spend time with you I want to try to help you understand.

I have made a promise to myself and now I am making it to you: I will try to set aside time when we can have a cup of tea, a chat or two. During that time we will not talk about my illness.Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our friendship even stronger.

I am most grateful for your time and attention. I’d like to think you will be sharing this letter with your family and loved ones. I believe that more we know about each other the better we can all get along, in every aspects of our world.

Always in my heart,

~ Barefoot

” Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly and tenderly, Laugh uncontrollably, And never regret anything that made you smile.”

 

ttaylor2008

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6 thoughts on “An Open (loving) Letter

  1. nearly all the symptoms you have mention I myself have regularly experienced.. thank for enlightening me.. worried yes but will maybe do something what? not sure…I know what you mean by trying to tell, how does one go about it. and more how to get one to listen. my lady. ;(

    • I do know what you mean about doing something. Really its such a dice game. And I am becoming more convinced that the less intrusion by more chemicals, and more kinds of treatment the better I do. Some of the medications I was prescribed the side effects were worse than the symptoms being treated.
      I think it is wise to know, just to rule something else out that might be easily treated.
      My toes and fingers crossed that this be something else for you. So many of these symptoms also belong to other conditions, part of the troubling diagnosis issues. There is not just a simple blood test to say negative or positive.

      Thank you for My Kind Sir for your comment. God to see you. ~

  2. Thank you so much Toni. This has brought so much enlightenment on my symptoms with hearing, pains and moods. The mornings are especially hard thinking that I am just lazy and don’t want to get out of bed. Love ya Deb

    • You are so welcome Deb. It is a difficult diagnosis to make even today. Sadly there is no blood test to say yeah or nay.
      Knowing though is half the battle in my mind, you then can start building an arsenal to fight the symptoms.
      You are a thriver Deb, you just need to have an answer. i love you too Deb & thanks again for covering my you know what!

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