Carmen's Creative Works

It is perhaps little wonder that over the years I have been studying alternative methods of healing.  I have what many know as invisible disabilities.  It took years of pain, suffering, confusion, self-doubt, guilt, doctors appointments, specialists and all kinds of treatments to be finally diagnosed with fibromyalgia and depression.

The pain goes back as far as my early childhood and the depression started in my teens.  I spent years beating myself up because I was different.  Even after diagnosis I would go through periods of denial and continue with the kinds of activity that would always result in the same end…. I would crash.  My body and mind would take over and leave me in a state I could not hide from.

The hard lesson of acceptance was the first step to healing.  Finding support groups and taking a workshop on living with chronic pain was the beginning.  I tried so many of the “special natural supplements” that promised improvements for people suffering from auto immune disorders. Tried the varying types of therapy of which “trigger pressure massage” was the worst and set me back further than it ever helped.  Then over time you find out that you have to be ok with what you can do and what you can’t, and that often that changes from day to day and hour to hour.

The best description I ever found for what I experience was a letter that was posted on the internet titled “Please Understand” a letter to family and friends of those who suffer with chronic pain.  I recently found it again on an amazing support site for people with Fibromyalgia and can be found here.  This is the message:

“Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all 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. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it is much more confusing. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but the pain is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

I know that it’s a lot to ask of you, but please try to understand.” original version written in 1995.

This letter has travelled the internet and been modified to fit other conditions but the story and message has always been a similar one, a plea for understanding.  Invisible disabilities are real, you may not be able to see it, you may find it hard to believe.  I just hope you never have to experience it firsthand.

Reiki

The blessing or silver lining of this has been a jouney following a path of alternative non-evasive healing.  I was always attracted to crystals and in 2005 took a course on crystal healing.  The use of crystals, meditation and energy are elements that I connect with.  I have since begun working with Reiki and connecting with the universal life force energy.

I have studied and received my Level III Masters certificates in three Reiki systems of healing:

• USUI
• Seichim
• Kundalini

In all cases the energy that you connect with is the same “life force energy” that is available to all of us.  While there may be different hand positions, symbols, crystals, tones, etc. that are used during a healing, each is focused on “intention” and tap into a divine energy that exists within and beyond this earthly plane.  Reiki energy does not discriminate, it is available to all and can even benefit those who do not believe.  It is bigger than any one individual and is a sacred gift to any who work with or experience it.

I found with each session I have become more and more connected to the energy and blessings this method of healing can provide.  We all have our own unique energy and I the have experienced the greatest connection with Kundalini which has been said to channel and gain access to the Earth’s energies.  It has also been called “Kundalini Fire.”  The energy in this form of Reiki has helped me to also veiw aura’s and energy fields around those I am near during a healing.

Reiki is a gift to both the practioner and the one receiving a treatment. The energy that flows through all can provide healing and relief in areas of mind, body and spirit.