Letter To Normals -I'm not sure about it?

When I was first diagnosed with fibro I think I quite liked this letter.
I wanted to make the world and everyone I met understand what it was like for me, how much I was suffering, how bad I felt. But now I think I don't really care what others think other than those that are close to me.
If friends are lost then how good a friend were they in the first place?
If people think I look good or I am getting better then does it really matter?
Those close to you want you to be well and happy does it help in any way if they truly know what your life is like?
I don't like to talk to about myself as someone who is suffering who has demons I don't think of it as helpful self talk.

I think I prefer the spoon story but I reproduce it here for you to decide for yourself, some of it is good but I don't know what do you think?
Maybe the thing is to use it to start one of your own.

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed.
And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless.
My pain works silently, stealing my joy and replacing it with tears.
On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating.
And in many ways my pain may be more destructive because people can’t see it and do not understand.... Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you.
My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy.
I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled.
When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something.
Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal.
Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn.
Please try to understand…. Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably.
I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week.
I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.
And there are those who say “but you did that yesterday!” “What is your problem today?”
The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit.
I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask?
I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways.
Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different.
I too have hopes, dreams, goals… and this demon….
Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees?
I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that.
But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Please understand…. Thank you for spending your time with me today. I hope we can work through this thing, you and I.
Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.com Written by Ronald J. Waller

Holidaying with fibromyalgia

Have just had a lovely few days away with my husband in Kent, but not too long ago the thought of travelling anywhere would have filled me with dread. Would I be able to cope with the travelling? Would the room and bed be comfy? Would it be boring for D when I can't join in because of pain or tiredness?

But now I look forward to our times away because like a good boy scout I make sure I am well prepared for the journey and the increased activity when away from home.

Its all in the planning about a week before I will start thinking about and getting together anything I think will make my holiday more enjoyable:
heating pad, enough medication, ipod, magazines, Nintendo DS, notebook, pain machine (Remedi pain device) and good beer guide for nice pubs.
I will try to research the area we are going to for things to do and places to visit checking out disabled facilities if I think I need them. I used to feel embarassed about asking for wheelchair assistance or concessions but now I just ask. The problem is one of not looking disabled but we had a really good experience at Leeds Castle in Kent offering disabled concession- free carer, land train up to castle, entrance through front door instead of down steps and wheelchair if needed.
Some other places have made me feel a bit like i am trying it on and was once given an enormously wide wheelchair I think because they thought the disabled person was in the car- I hope that is the reason anyway. When we went to Cornwall it was the first time of using a wheelchair and I cried the first time beause it is just admitting you need it but D convinced me it was better to use it and be together than him look around the gardens and me waiting in the coffee shop. D had to get used to it too as he kept abandoning me in various places while he went to look at plants and the like.
At the Eden project I used an electric wheelchair which was great apart from my lack of driving skills as I ended up managing to climb up a tree trunk in it until D came and rescued me. It was handy though when it started to rain as I could just speed off under cover and leave D to get wet.


The most inportant thing to take away is enough medication- I also have a letter from my doctor stating that my medication is on prescription and would check the country I am going to in case they have any rules about what medications are allowed. I always take them in their original boxes maybe being a bit paraniod but better not to have any worries.

Strangley enough had wierd reaction to sheets at hotel in Kent sneezing and itching every night so now will have to add own bedding to list. I have now bought a travel tempur matress but forgot to take it!!! In the past if the bed is too hard I have used any extra bedding in the accomodation to pad the mattress like blankets or spare quilts to make it more comfy.

If your journey has been long don't forget to allow time to recover- I didn't do that last year when we had flight delays and an awful journey and wasn't right for a good few days after arrival when I would have been better to have rested completely the first day and left D to his own devices.

I find that any holiday means spending some time apart but we are used to it now and will decide to go out during the day or in the evening or David might go for a walk while I rest or do somethng less taxing.

We even took a Dvd player with us this trip in case there wasn't one in the room and watched a nightly episode of "The Prisoner" together.