Some more reading..

Ok in posting these letters to normals I am just trying to have all of them in one area to make it easier to refer people to them.

Wayney

The Spoon Theory

FibroHugs - The Letter To Normals

FibroHugs - Letter to Fibromites

Letter to Normals
by Claudia Marek

Here is my letter to Normals. You are all welcome to use it, either as is, or as a basis for writing your own. Obviously not everyone will be interested enough to read through it, but for those who will, I hope it helps.

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia thought they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don't want you to think I'm making it up.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Othertimes there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes I just hurt all over.

Besides pain we have muscle stiffness which is worse in the morning. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.

Because I feel bad most of the time I am always pushing myself, and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are there.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things which I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain noises like the television or shrill noises. To smells like fish or some chemicals, or fragrances or perfume. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car,or home to sit alone and that's really all right. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemicals in my brain can me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now.

I have other symptoms like irritable bowel and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

The Open Letter To Those Without CFS/Fibro

The Open Letter To Those Without CFS/Fibro ...
(source unknown to Wayney at this time)

Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. 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 flat on my back in bed and I might not seem like great company, 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. I may be tired. I may be in pain. I may be sicker that ever. 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 five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. 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 up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are 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, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

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 doing something. CFS does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

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. 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 CFS 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 CFS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously.

Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things.

But most importantly, I need you to understand me.

Now for my comments!

First off, in my opinion the lawsuit is frivilous. The city does try to make things as accessible as possible for handicapped people. There are far more businesses that are inaccsible to worry about here.

The beach access I live closest to has no steps blocking the beach from the parking lot. The only steps are to the deck with benches. Would I ever attempt to take a non-beach going wheelchair onto the beach at any of our local beaches? Not a chance. It's simply too soft of sand. As for the port-o-potties....even not being in a wheelchair but having mobility problems, I'd not dream of using the handicapped port-o-potties. They're just not convenient to any area I frequent. But, public restrooms are a habitual problem here in MB anyway. There simply aren't enough and permananet public restrooms are a joke here. So the fact that the city has even attempted to provide what is considered accessible (by port-o-potty standards) tells me that they don't have it in for handicapped people.

I also wonder if by chance the information given to handicapped people by locals who are clueless what the city offers doesn't come into play here somewhat. As a former hospitality worker, I had to ask the right questions to be able to help the handicapped guests I had contact with. Most people did not know what the answers to questions such as "where do I find a beach-going wheelchair or handicapped accessible beach access?".

As for the editorial about disability being the problem of the disabled person not the city....I don't fully agree there either. As a nation we have laws to protect the disabled. Without those laws, there likely would be little accessibility in any public place. I don't wish to rely on the kindness of strangers in regards to access to public places. I've had problems in stores in this area that were only resolved by explaining to management that unless changes were made, I'd be filing a formal complaint with the ADA.

It is unfortunate that in one particular store the access was less of an issue than the attitude of the manager and clerk I spoke to. It took going farther up the chain to get changes made. I do not think that a store clerk needs to ignore a handicapped person that is speaking to them from a wheelchair in favor of speaking to the person's companion. I dared shop at Christmas time in a wheelchair and made a complaint about aisles not being wide enough. My husband was pushing my wheelchair and despite him not opening his mouth, the clerk directed his comments to my husband. I spoke to someone in management who assured me the store manager would contact me and that never happened. So, I went up the chain. I was able to share with the district manager some info not only on the accessibility laws but also some training guides for how employees should deal with handicapped people. The last time I was in that store, I did not speak to the staff (as that was a good day where I was walking) but did notice aisles were improved.

BEACH ACCESSIBILITY

Disabled resident: Disability is my problem, not city's

By Carole-Anne Hallyburton

Re "City upgrades beach access for wheelchairs," May 20.

I am a 36-year-old adult with cerebral palsy, and I'm the first to admit that even with my UNC Chapel Hill degree I can't navigate a port-a-john. Period. It doesn't matter how many handrails the city installs, my using a port-a-john ain't gonna happen.

The lawsuit [discussed in the May 20 article] leaves a mark on the reputation of disabled individuals that's tackier than a port-a-john at a wine tasting.

Frankly, I'm embarrassed by the plaintiff's allegations.

The Grand Strand has been a part of my summers for 35 years. Like the plaintiffs, I spent a lot of vacations unable to physically go out onto the beach. Unlike the plaintiffs, it never caused me to throw a temper tantrum, call it a lawsuit and try to give the Strand a negative spin in the process.

My family and I opted for more common-sense remedies, like accommodations with breathtaking views of the shore. Examples like this largely compensated for my problem. And that's what my disability is: my problem. It's neither the city's, nor the county's, not even the Advocates for Disabled Americans' problem. And it's certainly not the taxpayers' problem.

These days, I like to perch on the access area in North Myrtle Beach and reflect on how good it feels to be back in Horry County. Like many, I am eternally thankful to both Myrtle Beach and North Myrtle Beach for the ramps built over the past two years. They were wonderful surprises, but not something I felt either city owed me.

Since early childhood, I've seen repeatedly how a "please," a "thank you" and a smile earn myself and my disability 10 times more respect than a threat, a tantrum or a sour expression ever would.

I've also observed that able-bodied individuals are generally happy to accommodate any special needs that arise with me. Normally, they see those needs before I do.

I've eaten in restaurants here of many genres, from the hometown atmosphere of Hoskins to the tropical anonymity of Jimmy Buffett's Margaritaville to the Italian flavor of Carrabba's Grill, which incidentally was targeted by the plaintiffs. Not once have I been unable to wheel inside an establishment, get a comfortable table and enjoy a meal (straw and extra napkins included without my asking).

Other customers at their own will have moved their chairs and even their tables to allow me extra space to pass by.

Restaurants, cinemas, stores and attractions aren't the only locations along the Strand to offer courtesies to disabled individuals. Just the other day a city employee emerged from his manhole to stop traffic on a four-lane street in order to let me cross.

As I watched the sun rise over the ocean on Easter morning this year, I whispered a thank-you for the compassion of the city. It loaned the church a beach wheelchair in order for me to attend the service.

With all the positives I've experienced as a disabled person in Myrtle Beach and North Myrtle Beach, I truly would have to be bored to death and fishing for trouble if I used my energy to engineer a scheme like the present lawsuit. I sincerely hope the judge has the good sense to throw the whole ordeal out of court.

---

The writer lives in North Myrtle Beach.
Originally published: Myrtle Beach Sun News

Myrtle Beach officials say handicapped access has improved

Myrtle Beach officials say handicapped access has improved

Published Sunday, May 21, 2006

MYRTLE BEACH, S.C. (AP) - City officials say 45 of 149 beach access points are now usable by people in wheelchairs.

The city is being sued by a disabled activist who frequently sues businesses, cities and counties for failure to provide handicap access to buildings and other areas.

City spokesman Mark Kruea wouldn't talk specifically about the pending lawsuit, but said the city has spent more than $200,000 since last summer to add 14 wheelchair accessible points of entry to the beach.

The city also has increased the number of beach-going wheelchairs that it lets people use for free to 11, Kruea said.

The lawsuit, which is scheduled to go to mediation by the end of the summer, accuses the city of building a walkway with steps to the beach when it was previously a flat access route.

Other complaints include that the city's portable bathrooms lack bars for the disabled and that the city's handicapped parking is flawed because of drains, steep slopes and incorrectly drawn spaces.

Originally published:

Island Packet

Article published Jan 3, 2006

Disabled visitors sue Myrtle Beach

Associated Press

MYRTLE BEACH -- A lawsuit saying the beaches in Myrtle Beach aren't accessible to the disabled has been filed in federal court.

The lawsuit says the city constructed a walkway to the beach with steps over what was previously a flat route.

It also says Myrtle Beach's portable bathrooms lack bars for the disabled and the city's handicapped parking is flawed because of drains, steep slopes and incorrectly drawn spaces.

Linda Vandeusen, of Columbia, and Edward Law, of Orlando, Fla., are asking for undisclosed monetary damages and an injunction forcing the city to comply with state and federal laws concerning access for the disabled.

Both use wheelchairs and said they visited Myrtle Beach during the last couple of years.

Vandeusen is a member of Advocates for Disabled Americans and recently filed a number of similar suits against Lexington County, Richland County, a Charleston hotel, gas station and International House of Pancakes, a Lexington Applebee's, a Hilton Head Island Comfort Inn and a mall in Greenville.

"I'm trying to have accessibility to things that we people with disabilities should have access to," Vandeusen said.

Myrtle Beach spokesman Mark Kruea said a number of the city's beach accesses are handicapped-accessible.

The city also offers free beach-going wheelchairs and has an employees to make sure the city is compliant with the Americans with Disabilities Act, Kruea said.

Vandeusen's attorney said that is not enough. The city's beach wheelchairs are too heavy for a disabled person to operate without assistance, Anthony Brady said.

Myrtle Beach also needs pathways to the beaches that normal wheelchairs can access, said Brady, who thinks the city should use Hilton Head Island's beach accesses as a model.

A judge has ordered the suit into mediation by Aug. 11 and set a Nov. 1 trial date.

---

Originally published: http://tinyurl.com/qevym