Fibro Fog

An open letter about Fibrmyalgia Fog

© Barb Briley

Feb 6, 2002

Published Febuary 6 2002 Suite 101

Open letters of a fibromyalgia patient, Fibro Fog

Real large and with mistakes, please realize that all the grammar spelling etc has been left to remind you that Barb suffers also with this dreaded disease.

Hi,

As a person who conquered my pain. I found my life devastated by fog and memory loss. None of you are alone on this one. I know some of us have worse pain, others worse fog.

I struggled with this in fear for years before my current DX. My mother had severe fog and I was scared. I wanted to find out if it was genetic brain damage or inherited stupidity. I found out it was neither.

Fog has been my greatest monster to deal with. Someone said a few days ago that celexa helped their fog some. It seems to be an option.

7 years ago when my fog became so severe that my doctor and family were afraid I would wander into the woods and get lost I was depressed and yes gang... suicidal. It was a battle to stay on this planet willingly.

I lost so much during those years. My writing was the first to go. From there my cognitive reasoning, memory and ability to cook from memory, clean properly, and care for myself. I lost my self respect, pride and gained a lot of humility I didn't want. I was devastated and hiding it well.

It was hard for me to accept this and to learn to adjust. I have adjusted. I am not going to say I don't have fog that I don't struggle with it.

It is still my biggest monster. My pregnancy with my daughter woke me up. I HAD to do something. I couldn't stay the way I was. I went into counseling and reached out to the internet to help others conquer their pain. I have a good life now but it is still foggy. I have a saying. I recognise my fog but its a lot to accept and swallow at 34... it doesn't go down well and I still choke on it from time to time. When it comes to my fog I am stubborn and unwilling to surrender.

I still am not sure if thats good but it has driven me to find ways to cope. I can't say that you can return to graduate school at this point, however with your FMS maybe your school would make some special acceptions.

I have slowly pieced my life back together I am living a new more fulfilling life. I am basicly happy and pain free, however I flare on the best days I can be so fatigued I feel as if I can't move and on other days I have pain flares. I won't ever work again and I still struggle with my monster everday... but so do amputee's. You can slowly build a new memory system.

It was horrible when I first started then I realized something. Memory coping techniques are just like a cane or wheelchair. They are there to help you regain your life not smother it. Use them! If it takes a system that includes a carefully written schedule taped to the bathroom mirror, use it!

By using aides, gadgets, scooters, wheelchairs, message boards, pens, paper calendars, and computers parts of our lives can be regained. Make a new life fight for it and don't surrender. I have my writing back. My boyfriend is an incredible editor and I love him for it. But.. :) I still forget to shower all the time so when I remember it I do it right away.

Its life with fibromyalgia and fog and lets live it to our best!

Barb

Source: http://www.suite101.com/article.cfm/coping_fibromyalgia/89211/2

Dear Doctor:

A letter from mechrina

Dear Doctor:

As I wake from another night of no sleep due to my pain I realize today I have an appointment with you an appointment that I will revolve my whole day around, from preparing for it to the end of my day which quite frankly my mood will be based upon how my visit goes with you today. Which amazes me how the10-15 minutes you spend with me in the exam room takes control of the rest of my day. As you prepare your day to go on hospital rounds and drive to the office to start your practice, I want you to remember one thing, How would you feel if you could not make it out of your bed because your body is in too much pain to do so, your mind is saying I have to get my breakfast and get ready for my day, but your body is not cooperating, How would you feel if you could not find your car keys, or remember to return the messages you received about the patients in the hospital? How would you feel if you simply could not make your rounds, in the hospital because you are in too much pain to walk, then you have to go to the office and now your body is exhausted and in pain. When you meet someone how would you feel if that person told you it was all in your head that the pain you are experiencing does not exist. and that you do not need any more meds, to help you. How would you feel if you felt like you were being dismissed?

You see Doctor, I lead an important life too. Oh now I don't have degrees hanging on my wall, like you do, I do not have people calling me Doctor, but I lead a very important life too. But when Iam sitting in your exam room, maybe with a gown on and stripped of my dignity sometimes because that is what pain and a chronic condition will do to you, And you come walking in, sometimes not even a "Good Day" you know you are getting me at a bad time, when my pain is bad and Iam feeling lousy about myself, and you do not even give me the time of day, you dismiss me, you make me feel that I don't count, You judge me, make me feel like I don't know my body, all within 15 minutes. It amazes me as I type this how one person becomes the judge and jury of my life in a short period of time.

I wonder in your education when did you become the judge over your patients lives, when did you decide that our condition are not real, When was that day, when I have been coming to you for years that after treating me and knowing my most intimate secrets, because I trusted you, that you decided that you would no longer be there for me as my physician, and leave me out in the dust, I wonder how you would feel if that was done to you, or has it gotten to the point that you simply do not care anymore.

Well, my doctor, I have news for you, Iam not so insignificant as you might think, When Iam not here I lead a full life, alot fuller than your own, because one thing my chronic condition has taught me is empathy for other people, I do not have a medical degree, but I don't think I would ever want one,because I believe that when you achieve that certificate on the wall, you lose one important ingrediant that is compassion.

When we come to you we are at our worst, we are coming to you to heal our bodies not to be judged, not to be humiliated,or treated like trash. We lead fulfilling lives when we are not in your exam room, we are important to alot of people, We are not numbers, copays, test results, What you say to us and how you say it effects our lives, it effects our families, You would think in the deepest part of you something would click and say "Yes this is a fellow Human being who does lead a full life when he or she is not here" Sometimes I think that statement is too much to ask, of you, As I write this I know that tomorrow when I sit on the exam table waiting, and waiting for you to bring my test results in some of which will change my life forever,You will come in with out a Good Day and once again judge my life and tell me

How to run it,you will tell me that what I have is no big deal, or that you do not believe in it, you will not answer my questions, {which I have every right to ask} Judge me because I came in dressed up, hair done make up on etc, because I do not want my chronic condition identifying me.

Then you will walk out, and do the same to the next patient. But this time I will be prepared and not let you get to me, Iam in pain, but I will not let you judge me, I will move on from you, because you are not my Judge and Jury, and I will feel sorry for you this time, because I will know now that you simply will not get "it" and you never will, that your life is not as fulfilled as you want everyone to think it is by all your degrees on the wall.

Compassion Doctor is a big word, I suggest if you don't know the definition you should look it up, Oh forgive me, I forgot you will not find that word in one of your medical books, you need to find an old fashion dictionary.