Dragon

I think being "Normal" is overrated. I've never been accused of it and I revel in my interesting quirks.

solosater

This letter was modified (with permission) and published by Paula Payne in 1996 to become the "Letter to Normals". Since then it has been printed in various publications (with and without permission). Due to this fact, I would like to state that This "Letter to Normals" be used to help other people with FM/MPS as long as proper credit is given to Paula Payne and to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS.) for creating it.


While this letter speaks about FMS and MPS it really applies to most any chronic health issue one might have, be it MD, MS, CFS, Neuralgia, Migraines, Lupus, Cancer, Arthritis, Chemical Sensitivities, Depression, Anxiety or any of the other many and varied, exhausting and painful illnesses people suffer with on a daily basis. I'm not real sure who "normal" applies to but I think this letter may speak for many of you too.

Letter to "normals"

FMS: Fibromyalgia syndrome
MPS: Myofacial pain syndrome

Letter to people that don't have FM and/or MPS:

Having FMS /MPS 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 FMS/MPS 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 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 and work and my family and 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!" I am not sounding better, I am sounding happy. 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. And, 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 gets more confusing.

- Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you.

- Please understand that FMS/MPS is variable. It's quite possible (for me, 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 kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

- Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

- Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

- If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, and if something worked we would KNOW.

- If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you.

... And, as much as it's possible, I need you to understand me.


All original copyrights & privileges are still intact. Please respect them.

sheftali52

Solo, the FM/MPS letter you shared was very interesting. I like to try to understand what others are experiencing. In my humble opinion, some folks are too interested in foisting their ideas on others without an understanding of what others are going through. Thanks for reinforcing the idea that knowledge and empathy can do wonders.

schnuggie

Solo, thanks for the letter. I hope it gets read a lot so that "Painless " people can understand the ones IN/WITH pain. Have a wonderful day........!

Baldur

sheftali, +10 points for 'foisting'

polenta

Thanks Baldur for your information about Wednesday Pasta Day.
I really didn't know. Here it's Thursday and Sunday, that doesn't mean you MUST eat pasta on these days or you CAN'T eat pasta any other day. LOL

Here we have TWO KINDS OF PASTA.

1- Dry Pasta which you can buy packaged or a sealed transparent bag.

2 Fresh Pasta which you used to buy only at FABRICA DE PASTAS (factory
of pastas) and you can still do so or in their branches inside super-
markets.

Pastas are a tradition in Uruguay because many people are of Italian descent. We have ravioli, caneloni, gnocchi, spaghetti and others. You find them in every house and every restaurant, be it small and inexpensive or fancy. What sauce do you use most?

marius

It seems the muses have been working: I love what people have contributed about what's "normal!"

solosater, your contribution is GREAT! I have a friend who told me that when she is happy, it doesn't mean the pain has left; just that she's feeling happy in spite of it. She has a terminal illness but still, much of that letter applies. Thank you!

marius

solosater - go to post #29 in general discussion - drugstore. Polenta is describing fluorescent lights. (giggle) She doesn't like them either!

marius

midnightpoet, what you wrote brought up many thoughts and feelings. Have tried to edit but not having much luck. So, I won't bother with that any more.

First thing I want to say is that my heart goes out to you. There are members of my family who have bi-polar and borderline. Not easy! And, I hope you talk to your doctor about forgetting to take your meds, especially as you say they help you. My very dear friend who has bi-polar always tells me there is only ONE thing she has to remember each day: to take her meds. : )

My diagnosis is mostly PTSD, then dysthymia (a mild depression), anxiety and a touch of OCD. Over the years I tried many different meds, but none worked and I had horrible reactions. Finally I got a doctor who took me off all pills and gave a regimen of non-prescription medications: yoga, meditation, exercise, qi gong, time outdoors, and a list of reading materials. The yoga and exercise are to be "taken" daily. The outdoors time should also be daily, if possible. The qi gong and meditation should be a few times a week.

Well, I've been “on these meds” over five years now and as long as I keep taking them I feel great! One time though I went three months without any yoga and could not figure out what was wrong. Then I remembered, "Oh yeah - stopped doing yoga." Another time I went a few weeks and could not figure out what was wrong. "Oh yeah - stopped doing yoga." Funny to think of yoga as a medication and I can't say how it works, but for me, it does. This isn’t the easiest medication route because, as you can imagine, it takes quite a bit of time. So, I guess I could say I struggle to take my meds too!

Sorry I’m on a band-wagon, but if you knew my family you’d know why. I grew up in a family of ten where there was an overwhelming occurrence of mental illness. Here is a partial list of family problems. Some are actual diagnosis and others are our best guess as only five of us have received treatment and/or meds. The list is: paranoid schizophrenia, some kind of mild schizophrenia, depression, borderline personality disorder, panic disorder, anxiety disorder, OCD, PTSD, bi-polar, some kind of mild bi-polar, alcoholism, and drug/alcohol self-medication. Yes, all of that is in just ten people and most everyone has more than one of those things! So, you can see why I get on a band-wagon about meds. : )

You wrote that you have felt very alone in life. I have met many people who’ve expressed that feeling. I have also felt very alone much of my life, and of course I have, people in my family were unable to bond. Have you talked to your doctor or therapist or minister/spiritual teacher about this feeling? I ask because all three of those sources gave me things to do that help when those alone times show up. It’s different for everyone, but I pray you find relief from that awful feeling.

And, now ... your dream to be normal. That is such a lovely dream! I hope that dream comes real for you, and you know ... it just might. I had that same dream and feel that it has been answered although maybe not in the way one would think. The way it has been answered is that I feel more normal being who I am. In other words, it feels normal to be myself. Another way the wish for normalcy has been answered is in the realization that everyone struggles. Who knew? I believed that normal people didn't struggle, didn't suffer. Well, they do. True, they may have better skills, but coping skills can be acquired if you have mental illness. Even my brother with paranoid schizophrenia keeps adding to his life skills! He had to kick a roommate out a while ago and he did it without having a big fight. THAT is a first for Matt and he’s so proud of himself. I’m proud of him too.

Anyway, I have no idea what normal is, but if "normal" is based on statistical data then mental illness seems pretty normal to me! Check out the website below where I found this quote: "Mental disorders are common in the United States and internationally. An estimated 26.2 percent of Americans ages 18 and older, about one in four adults, suffer from a diagnosable mental disorder in a given year."

Daunting statistics, but a person with mental illness today is in a much better position than when I was growing up! And the “stigma” is disappearing too. Did you know that in the 1920’s people thought epilepsy was a sign of a bad or weak character? Can you believe it? Things are so much better now!

http://www.nimh.nih.gov/health/publications/the-numbers-count-mental-disorders-in-america/inde x.shtml#Intro

If website doesn’t work, google nimh (National Institute of Mental Health).

PS Since you are an “unknown” to me on TD, I looked around and saw that you do ThinkWrite. WOW! You write some great stuff! Love your stories, your style!

PSS And, apologies if I came off sounding like I’m telling you what do, midnightpoet. I have NO idea what you need to do. I hoped to share my experiences and pray that is what I actually did. : )

marius

http://www.nimh.nih.gov/health/topics/statistics/index.shtml

Maybe this will work.

marius

http://www.nimh.nih.gov/health/publications/the-numbers-count-mental-disorders-in-america/inde x.shtml

This has breakdown stats ... if it works.

midnightpoet

I have a lot I want to say, but I'm overwhelmed beyond words right now...

I'm going to try to get my thoughts together, and I'll be back.

lynnspotter

About 15 yrs ago, my husband gave me a T-shirt that said 'My next husband will be normal'. I thought it was funny! As I wore it, women that saw it mostly laughed & thought it very funny! Men that saw it almost always said 'what's normal?'. I think both were reacting to the fact that there is no NORMAL. I say thank goodness to that. We just need to be happy with ourselves & our own brand of 'normal'. After a clinical depression at age ~40, & being helped with anti-depressants, & found I had life-long low-level depression. That had made me feel 'not normal' for for ever! Now low doses of anti-depressant keep me feeling much better. Have a sister that is bi-polar, & never could understand her till I had my own mental illness. Nothing like going through similar things to help you 'get' each other! This really is a great thread to promote understanding!

midnightpoet

I think my brain is clear enough to get my thoughts out...I'm going to try anyway.

Solo...that letter is wonderful and really opened my eyes. I've never really known about or understood FMS or MPS, and if I knew someone with it, I probably would have done a lot of the things that the letter says not to do. Not to be mean, but just because I don't understand...the letter helped me understand a lot more, and thank you so much for sharing it.

Marius..You said "She's a shiny soul"...and I want to thank you for that. That is the most touching compliment I've ever received.

I have a lot to say on the subject of medication and normalcy, but I don't know if I can get it out, or if it will be understandable when I do. The thing about me is that when I write something, I can't think when I do it. If I do my mind gets way ahead of what I'm writing, I lose track of what I'm saying, or convince myself that what I'm saying is stupid and chicken out from posting anything. That's why I go so long in silence...I'll type something, think about it, and never post it. I do it with stories and poems I write too...So I'm letting my mind go and just writing this right now. I apologize if I sound stupid, ramble, or if my thoughts jump all over the place.

On the subject of medication...I have 2 meds I'm supposed to take every day. I affectionately call them my crazy pill (an anti-psychotic) and my happy pill (an anti-depressant). It's taken me years to get where I am right now with my point of view on medication. I was diagnosed at 16 and spent years on and off meds, sometimes just trying to find one that worked, sometimes refusing to take them all together, saying that I didn't want to have to take a pill every day for the rest of my life in order to function. Some of the meds made me into a zombie, and I hated that. I felt I lost who I was. Yeah, I didn't feel depressed any more, but that's because I didn't feel ANYTHING. And with bi-polar, I feel my emotions shape who I am, even though they're out of control sometimes. I want my emotions managed, but I still have to know that they're there. Now, with a good doctor who worked with me to find the right medication, and a therapist who works with me on acceptance of my medication, I can go weeks at a time without forgetting to take a pill, and I feel great. BUT...I still forget to take them sometimes...and my world goes to hell again.

I like your medication, marius, it sounds so lovely, and I can understand why it works. I try to do at least 10 minutes of hard exercise a day. I started doing that to try to lose weight, and I've found that it also helps keep my head clear, and keep the depression away.

I feel alone so much, because no one in my family or friends really knows how to take me. I get my moods...I get quiet sometimes and trapped inside my head, and all I want is for someone to pull me out of the racing, obsessive thoughts. When I'm sad they say "have you been taking your meds?" more often than asking why I'm sad. When I'm happy or excited, they ask "are you manic right now?" rather than letting me share my joy with them. My own mother walks on eggshells around me most of the time, scared of what I may say or do, because she's afraid of strong emotions. But my most common emotion is loneliness. I just want someone to understand me. Not that I think I'm the only one to go through this, or that my problems are any worse than anyone else's...I just want someone to know what's inside my head. But I keep people out, because I'm trapped there and afraid of my thoughts.

As far as normal goes...I love my abnormalities. I like that I'm "weird". But I'd love to go through life not wondering when the next crash is going to come. To be able to do things when I say I'm going to do them instead of having emotions make me lose motivation, and feeling apathetic. I want a normal sleep schedule, instead of wondering if I'm going to have insomnia, or if I'm going to sleep too much. I want to get out of my head and experience the world instead of thinking too much about too many things. I don't know if these wishes qualify as wanting to be normal, but that's the easiest thing I can think of. But more than anything I want to not be alone.

I'm so sorry for this long ramble, and right now I don't know half the things I said. I just want to thank you all again for being such beautiful people and giving me faith that understanding does exist somewhere in this world.

I'm going to go hide in my corner now.

matthew

I love my abnormal baby girl... I on the other hand am perfectly normal... And as soon as the polka dotted gorillas stop staring at me I will post this...

.

midnightpoet

and I love my profoundly unusual father...:D

maddyjean08

What is normal?
My theory:
There is no real normal. Normal is a figment of the imagination. You may think you are normal, but that's because you're used to what you do, making it a "normal" part of your daily lifestyle. Imagine this: You're friend invites you over for dinner. You walk in and a toddler runs past you screaming. " Not normal", you think. You're still at your friends house. It happens to be Wednesday. " Taco night", you think. " I love tacos". You sit for dinner and the plate set in front of you is not tacos, but spaghetti. Once again, you think this is not normal. You tell you're friend that none of this is normal behavior. " Of course it is", she says. " Tommy likes to scream for fun and we always have spaghetti on Wednesday". I have explained two families different "normals".

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midnightpoet, far from rambling, your writing is concise and comprehensive. Your thoughts are not in the least bit muddled. To me you are as normal as I am ... that won't be much comfort to you because I am at least a little bit batty ... but believe me when I tell you, you have the ability to write ... and to write well. I understand how your depression can play havoc with that ... we need to be in the right mood to write creatively ... but here, you are writing your thoughts as they come into your head and the result is proof that you are very level headed.

Keep writing whenever you can and have confidence that it will not come out as babble. I have read your every word and it makes easy reading. You are very talented and I hope you will write often, whether it's fact (as here) or fiction for ThinkWrite. Ron did us a great favour when he started the ThinkWrite series. It allows us to write as and when we feel like it, without being compelled to do so when we don't.

By the way, where are you Ron? I for one miss your input.

belladonnis

Hey midnight,
You are not alone. I suffer from depression. Most people that think they know me wouldnt believe it because I have become very good at hiding it. They see me as this happy, well put toghether person. In some ways I am. Thanks to medication. I have to rotate my meds sometimes because after awile they dont work, but i have to be careful and take the ones that are in the same family. I have tried others and they have been mistakes. Big mistakes!!!!
I have a great therepist now that I can really talk to about how I feel, which has made a big difference. She has helped me to see that I am who I am and how exhausting it is to hide it from everyone.
I have ups and downs all the time and I always will. Im trying to learn how to control the down times so that I dont hit rock bottom, because rock bottom is what it is, the hardest place to land and the fartherest place to climb out of. Ive been there.
My close friends and family accept that sometimes I wont answer the phone when they call or that I may sleep my weekend away when I dont have my kids.
On my kids....like my meds they have been my saving grace.
Something eles I have learned in therepy that has helped me is that the people we see that look like they have it all, are always so happy and so together are more than likely just like me.......very good at hiding it.
As far as being normal......I dont feel normal, but I feel I am the norm.

Robindcr8l

Midnightpoet, just to give you some hope... I think I remember somewhere that you gave your age as being maybe 20 or so. I want to tell you about my friend's sister, who was diagnosed bipolar when she was 18. "Mary" was a straight- A student with a full scholarship to college. She was in her first semester when the demons took over. Her whole family was shocked and never saw it coming, but in retrospect, the signs had been there for awhile. So I think for you it is good that you were diagnosed earlier rather than later, just so you have that much more time to find the right treatment. Anyway, Mary's anxiety and unstable emotions peaked and she tried to commit suicide by throwing herself over Niagara Falls. It was all very dramatic, and again, her family was so stunned they didn't know where to start in order to help her. Back then, too, mental illness was still very hush hush and not so much education or resources available.

Mary went through several years of treatment, meds, disability, erratic behavior, hospitalizations. But one day she found what worked. It seemed like it took an eternity to me, so I can only imagine how it seemed to her, but in reality, it was probably less than 5 years total. Right now Mary is 40yo. She has been in a stable, loving relationship for over 15 years. She has had a stable, decent-paying job for much longer than that. I'm sure she still has her good days and bad, and that they are probably much more dramatic highs and lows than I experience, but she has been effectively managing them for many many years now. And when I see her, she seems genuinely peaceful and happy.

So Midnight, I think that you can have hope that you are getting closer. And hope that there is a light at the end of your tunnel. And remember one thing... EVERY experience we have in life, good bad or ugly, makes us who we are. So learn to love yourself for that person you have and will become. Really.

OK, was all that too corny? I hate corny. But the story is the absolute truth. Mary made this crotchety old nurse belive there is some hope out there for mental illness. And I try to remember that when I have a patient who is particularly tortured by it. Take care.