The Letter To Normals

[Toomutch]

I found this letter, and wanted to share it with anyone who suffers from Fibromyalgia.
I made copies and shared the letter with my family, so that they might understand me better.


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 Welcome to Fibrohugs, your Home of Fibromyalgia Support! - Home Written by Ronald J. Waller

[grateful2b]

Toomutch, thank you for posting this...my fibro is in remission at the moment,...fingers crossed.. but this letter brought it(memories) all screaming back....take gentle care, hugs, Grateful

[Astro]

[resentful wife]

Thank you, that was very straight forward. I wonder if there is one to express what RA does to you?
I have to sumit a package explain what I can and can't do and don't know how to explain to someone who doesn't have RA.
Linda

[Toomutch]

Linda - do you mind telling why you are needing to submit a package explaining your RA?

[Toomutch]

Linda - I am searching for a letter explaining what RA does to you. I havn't found one yet, but I will keep looking. I did find a book you may be interested in.

Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why (Conquering the Confusions of Chronic Illness) by: Lisa J. Copen

It sells for $14.00 on Amazon.

I hope this is helpfull.

[Toomutch]

LindWhat RA is Like: A Letter For Family and Friends
Written by Wayney
30 December 2007
It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough.
Some days I need splints, a cane, ACE wraps, or even a wheelchair. Other days I don’t. Just because I don’t always need those helps, doesn’t mean I’m faking it.
My pain can travel from joint to joint from day to day or in fact, hour to hour.
I sometimes need a handicapped spot. I don’t like it. But, I need it. I may look healthy enough that I don’t need it but walking out of the store, I will likely be having problems walking.
The medicines I take may have nasty side effects. I know this. I don’t need reminders of this from someone who doesn’t live in my body and feel my pain. I don’t enjoy taking the medications but I have a disease that needs to be medicated.


Don’t lecture me about the addictive nature of pain medications. I know the risks. And don’t judge me for using pain medications. It doesn’t mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life.

Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don’t move right and other symptoms. Sometimes, I’m grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don’t look “normal”. This is all due to RA.

Please don’t suggest “cures”. RA has no cure (at least now). So, I have it, it is incurable. Live with it…I do. I trust my doctor and the treatment plan we’ve worked out between us, so please don’t try to convince me you know a person who “cured” themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they’ve been “cured”.

If you’ve ever broken a bone, think of that pain and magnify it. Then imagine all over your body. That’s how I feel at times.

When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I’m not doing it to slow our trip down. I don’t take joy in having a hard time getting moving after sitting for awhile. Don’t hassle me over it.

Don’t assume when you hear the word “arthritis” that I mean osteoarthritis, which is what most people think of when hearing arthritis. Most people associate the word with the wear and tear arthritis of aging. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I’m not too young for either. Infants get RA as well as adults. Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I’m not too young for arthritis, please don’t tell me I am. And if you still think I am, well, my body and doctors say different so I’m going to listen to them, not you.

I may need to rest more often than most people. It’s not that I’m lazy. It’s that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time.

I may not have “just” RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems.

I don’t enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don’t assume I’ll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don’t try to make me feel guilty. And if I say yes, but have to change my mind later, please don’t be angry. I don’t like doing that but sometimes despite my best planning; I just can’t make my body cooperate.

There are things I can do that I also enjoy doing that may look like a struggle to you. Please don’t try to “protect” me by taking things from me or stopping me from doing something. If I’m doing something and not asking for help, it is because I am ok doing that. I’ll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don’t just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don’t be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn’t apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.)

Just because I look healthy, doesn’t mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy.

Please do not think it is funny to force me to shake hands and then use a crushing grip. It’s not funny and it’s quite painful to be honest. Also please don’t assume because I don’t shake hands that I’m a snob or anything other assumption. It’s just quite painful, even if my hands look normal.

Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me, whether it is activities I enjoy, my job, my ability to do some of the things I found simple before. To me it may seem like I’ve lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA.

Do not assume I’m “just depressed”. Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don’t need to “get out more” and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can’t do as much when I go out.

Also please don’t try to convince me that changing my diet will “cure” me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn’t help everyone.

Also, I don’t need to be told I need more exercise. I’d like to be able to exercise more but may not be able to. That is frustrating enough. I don’t need to hear from others that I’m not doing enough.

Please do not tell me that my choice of treatment is invalid because it is not conventional.

Author's note: This would not have been possible without those of you who suggested ideas. For that, I thank you. If you wish to share this work with others please provide source link and © information.

a - I found a letter:

[resentful wife]

Too Much
Thank you so much, I was just going to find a RA forum.
I have to fill out an informational pack because I've applied for social security.
My husband passed away at the end of June and we had thought that I would be recieving a portion of his Milatary pension, but their claiming that they don't show me as his dependant, which they could have mentioned when HE called them to make sure I would be taken care of just prior to his death. That will take longer to settle than SS, guess we should have sent them a wedding invitation 10 years ago.
They call it a Function Report. Well I still can function its just slower and a lot of time its painful. The only Part that can be seen at this time is a side effect of taking steriods, which is bruising and skin tears bleeding because of my skin being thinner.
Their questions are all about normal everyday things that a person has to do to get by, I just have to do them when I have a little bit of engery. They all sound so mundane but are hard to get done when your bones hurt and it hurts to walk or stand you have no engery just tired all the time. At least they did send a page for me to "explain". But trying to find words to explain to someone who doesn't know you why you have to run hot water over your hands before you can hold your tooth brush or why you have trouble walking upright first thing in the morning is hard to do unless they have been there done that or know someone who has.
Thank you again for taking the time to look for that letter and the book title. It will help so much in their exlpaination part.
I know that you've had a full plate, I hope that you are doing okay.

Here's to better days for all of us!:ghug

Linda

[DesertEyes]

Toomutch, thank you for this wonderful thread.

ResentfulWife, I'm so sorry you are going thru that paperwork nightmare. You are in my prayers.

Mike

[MROBI]

thank god for the pain dr.s and all of you who remind me that im not the only one in great pain.

[Missybuns]

Hi, Great letter to the normal! I hope this doesnt take away from the main topic...maybe it should be a new thread (?)

resentfulwife mentioned RA...


I have RA. I take anti-inflammatories and also Disease
modifiers...and a stomach pill to protect my stomach from all that ibuprofen....also the RA med (disease modier) robs me of my folic acid...so I take that in prescription form too.

None of these meds are narcotic or habit forming. My Rheumatologist knows I am in recovery.

It was difficult for me to accept that I need to take these medications for the rest of my life...because RA is incurable. As an addict I really wasn't very open to taking pills on a daily basis. It took me a couple of months (and continued and worsening pain and progressive joint damage) to make the decision and surrender to this medication routine.

I came to realize it is my responsibility and I must or become crippled.

I take my meds reuglarly and I have no severe pain and my joints are no longer under attack.

This is recovery!

For those of you reading this and aren't familiar with RA...it is an immune system disease. Our joints become inflamed and our immune system attacks where the inflamation is...in our joints. So we have to take anti-inflammitory meds AND Disease modifiers (I take methotrexate once a week). This put my RA into "remission" if you will. The RA factor is still in my system but it is modified by the drug so is not attacking me. These meds have not always been around and are indeed a blessing of modern medicine.

I truly hope the scientists/and doctors will learn more about Fibromyalgia because I have some what of an understand of pain one day and not the next. I went through some excruciating pains before I got a meds program. And after...well I still never know when pains will pop up, could be in five minutes or could be tomorrow. It's scary. I have to be very careful because if I get injured and experience any joint damage at all the RA could really attack and destroy any convenient joint. So I do have some cautions and a few limits.

prayers for modern medicine to reach better treatments for fibromyalgia.

Sincerely and grateful,
Missy

[resentful wife]

Besides the steriod, that was the first med I was put on. It started to effect my liver.

Next was Embrel, which did nothing.

The last try was an infusion of Orencia, which did excatly the opposite of what it was suppose to, and for two weeks I felt like I had been run over every day.

Have no idea what they will try next.

Linda

[Missybuns]

resentful wife,

You will be in my prayers

Sincerely,
Missy

[Lenina]

(((((TooMutch))))))

Thanks for posting that! I'm in flare up right now and really feel miserable. Knowing I'm not alone helps and I hope everyone feels better soon. I think it's the cold weather triggering the flare. I especially hate the metal fog. My jaw and neck is particularly bad tonight.

Love,

Lenina

[Toomutch]

(((Lenina)))

Sorry to hear that you are in a flare, they do make life so much more difficult.
I have been in an ungoing flare since the 1st of the year. I think it's been triggered by an ongoing sinus infection that just will not go away...

[Lenina]

(((((toomutch))))))

I'm sorry to hear that the sinus infection still hasn't cleared up. I know how miserable they are as I am prone to them too. My friend was having what seemed to be infections with a chronic sinus blockage and turns out she had some kind of polyps. I don't remember how it was finally diagnosed but do know she got relief.

You're always in my thoughts, sweetie. I hope you're feeling better soon and thanks for your kind words!

Love,

Lenina

[resentful wife]

Hope you both get to feeling better soon.

Linda

[serenityqueen]

Suzette, I cannot thank you enough for the letter about RA. I actually clicked onto this forum to start my own thread about this. As many of you know, I fractured my pelvis about 3 weeks ago. I didn't fall, there was no accident, due to my RA (and other diseases) and being on Prednisone for 3 1/2 years, my bones are so brittle that it just broke.

Yesterday was the first time, besides going to the Dr. or a few other medical trips, that I actually got out of the house. My neighbor and I went to Walmart. I was so happy to go that you'd think I'd won a world cruise or something. I knew they had the electric scooters so I could get around the store on my own. I went into the store in the best mood ever, so full of gratitude for being out of the house and since I have gotten some of my back disability pay, I was able to buy some of the things I've needed for so long now.

Before I even got out of the car, I realized just how downright mean some people can be. I was waiting in the car while my friend went to get me a scooter. A greeter was charging it, which only takes 5 minutes while Stacey stood there chatting with him. A woman came up, unplugged it and started to sit down. My friend and the greeter both told her it was being charged for someone who was still in the car who had a fractured pelvis. This woman's reply was,"Well, she's not here now, too bad." and she drove away. After about 15 minutes, someone was done with another one and Stacey was able to bring it to me.

Once in the store, we split up with our lists and agreed to meet at a certain time. I could not believe how many people will watch someone in an electric wheelchair trying to reach something and go out of their way to avoid having to help. I'd see people looking at me out of the corner of their eye or turn their head the other way to avoid eye contact. I was in the women's dept trying to find a pair of summer pjs. There was an employee watching me like a hawk, like I was going to try to steal something. I was reaching up to the top rack, trying to flip the hem of the jammies to find my size. She just stood there, staring at me. Finally, when one accidentally came off the hanger from me trying to find my size, she sarcastically asked if she could help me find something. I told her what size I needed, she began at the front, where the smalls are (obviously by looking at me you can see I'm not a small) flipped through about 3 or 4 pairs and said, "Sorry, we don't have any." and walked away! The worst was when I was in the center aisle, at 3:00 on a Saturday afternoon. . . you can imagine how crowded it was. I was trying to reach a case of Diet Pepsi and many, many people just kept walking by. I know they saw my struggle but not one person bothered to even ask me if I needed help. Finally, a little boy, about 6 years old came over and tried to help me. I knew he couldn't lift it, much less reach it but I didn't want to tell him he couldn't do something or that he was too little. His parents were no where to be found. When I got scared that he'd get hurt, a big, muscle bound man carrying only a gallon of milk was walking by. I asked him if he could please help him (meaning the little boy) You would have thought I asked this man to put a bus in the trunk of a car or something. He let out this big, dramatic sigh, put the milk down and got the pop down. I was stunned. By the time I got into the car, I was actually crying. My excitement of my big trip to Walmart was crushed by the people who just seem to not want to be bothered by someone in a wheelchair. Come on, people, I'm not contagious for God's sakes!

I know I'm rambling, but I am still pretty upset by this. I realize some people just don't have the knowledge about our diseases but it's not like we are some kind of a lepper (sic) or something. I cried off and on all night about this. I didn't ask to have these disesases. Just like the letter said, it's not fun not being able to do things I could once do. It sucks to have plans to do something and when the day rolls around, my body just won't let me. I try to be very strong, grateful that I am in Recovery and alive for that matter but sometimes, I just feel so overwhelmed with all of this. I live alone, I don't have anyone to ask to grab me a can of pop or heat me up something to eat. It's not easy to even heat a plate of food up and carry it to the table using a walker or even my cane. I've dropped a few plate fulls of food on the floor and then get the pleasure of trying to clean it up.

My son who's 20, does come and help me when he can but he works full time and is a full time college student. He has came over and done my laundry for me because the laundry room is in the basement of my apt building and you have to go outside to gain access to it. Can't carry a basket of dirty clothes down steps on a walker. He doesn't complain but I know it's uncomfortable for him to be washing his Mom's undies and bras.

I ordered a pizza a few nights ago and when I ordered it, I told them to let the driver know it will take me a little longer to get to the door and why. Pizza guy gets here and is ringing the hell out of the security buzzer. When I got to it, he didn't answer. I opened the door to my apt, looked outside and see him pulling away. I called right away only to be told that there would be an extra delivery charge added for him to come back! WTF? Did I not tell them? I did get it cleared up with the mgr, but I was shocked.

I thank you for giving me the opportunity to vent. Like I said, I was going to start a thread on this, but as usual, there are others on here who are going through similar situations. Thank you.

God Bless,
Judy

[suki44883]

Holy Cow, Judy! I'm shocked at the rudeness and down right nastiness you encountered! I'm so sorry you had to endure all of that. (((((JUDY)))))!!!

[resentful wife]

Judy, I'm so sorry you had to endure that treatment from Walmart employee's, it would have been demeaning to even able bodied people. It's a shame that so many people have forgotten how to treat others as they would like to be treated.
I know that at times when I go shopping and I'm moving slow and taking my time to conserve engery, I sometimes feel like waving money at the employee's that watch me like a hawk, but then I think I'm doing nothing wrong and they get paid by the hour LOL.
Hope you feel better soon.

Linda