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Hello, my name is Linda. This is where you can come to read OUR STORIES. In reading our stories, you might see yourself and be able to relate. Our Stories are very personal, and some of us have hidden our identities because a lot of our family, friends and co-workers do not understand or acknowledge our and your invisible illness. This is a place of sharing, so please e-mail me with any questions, concerns, or comments. We would also love it if you would like to share your story with us, because this site belongs to you.

I remember feeling some pain as far back as I can remember. Mostly in the mornings and late at night. I always thought it was joint pain and that is still what it feels like although I now know it is more muscle related. I have always been an "A" type personality and was a go-getter. I actually worked 4 different jobs while going to school ½ day my last semester of High School. Instead of continuing my education, I went straight into the workforce and worked my way up at a small non-profit association, where I had the opportunity to go back to school at their expense. I went to school ¾ time, worked full time and worked a Saturday job. I almost made it through school, but took a break to change careers when I ventured out into sales. I loved sales, loved setting my own hours and doing my own thing. I continued to work a second job and still spent time with my family (by this time my son was about 6 years old). It worked great with his school and my husband's 4 day work week (he worked 10 hour days). The only problem was this sales job was not like your normal sales job. I sold pre-need insurance for several funeral homes. I was consistently their number one sales person in the region and really did enjoy helping people make these decisions. A few things happened that changed my entire life. I don’t know how they all fit together or which ones have relevance, but here is what happened… --I fell at work. Slipped on some water that had dripped from a plant. Not a serious fall, but my hip gave me some problems. I didn’t pursue this at work in anyway. --The funeral home I was ‘housed’ in was sold and they moved to another location. The new faculty did not have an office for me. They decided my office would be in a corner of the ‘break’ room. Didn’t sound too bad. What they didn’t tell me is that it was also the body room. I had been exposed to formaldehyde in small amounts at the other location, but not like this. Even though it was not a full-service funeral home (meaning that they did not embalm there) the bodies smelled strongly of formaldehyde and to this day I get very ill if I smell it. The kicker of this situation was two-fold: #1 I found out the company was not doing everything legally and began to look into it (they were not sending all the required forms to the purchasers and this was very serious because it fell under the insurance laws and would directly come back on me) #2 I arrived a few days later to a horrible site. ‘They’ had brought over a body on Friday that not embalmed because it was to be a cremation and the family wanted to view the body before this was done. Evidently, they ran out of time and the body was left at this facility instead of transported back to the facility that does the cremation. I won’t go into detail but just let me say…I will never in my life forget the site and smell when I walked in that morning. I left and went to the Insurance department and filed a claim and then went to the unemployment office. During this time, my health was getting bad. I was suffering from aches and pains and felt like I was always on the verge of getting the flu. I was struggling to get up each morning and was exhausted by noon. I begin my doctor journey, which I will expand more on in a few moments. Just to sum up my career. I bounced back, or so I thought! I started working for a small (but very lucrative) brokerage firm. The original owners sold the business in 1999 and I began working for them in 1996. It was pure hell working for them and to this day I wonder why I stayed. The money was unbelievable, the hours were horrible and the abuse was disgusting. We were called names on a daily basis, screamed at, cursed at and I even witnessed a few incidences of physical abuse. I stuck it out and fell prey to their ‘dangling carrots’ in the form of large bonuses, always telling myself that I would leave after the next bonus. (They were as high as 10k per quarter) We were bought out and the stress level went down, but my health was very damaged. I never thought I would be worrying about my health at such a young age. The major problems began when I was about 28. My symptoms are: Aches and pains of all kinds Vision disturbances (both double and blurry) Red, sore hands Extreme jaw/face pain Chills Upper back and neck pain Migraines Night sweats Leg cramps Extreme fatigue Rashes on neck Numbness and tingling in arms and legs Depression (secondary) Chest pain Brain fog (includes loss of concentration, memory problems and general confusion over everyday things) Chemical sensitivity Sensitivity to smells/lights/sounds Numbness of chest, head, and face My diagnosis’… Chronic Fatigue Fibromyalgia Numerous fibroids and cysts Ulcerative Colitis (possible Crohns) Sleep Apnea TMJ Possible MS Arthritis (degenerative) Pernicious Anemia (Monthly B-12 shots) I am currently seeking disability which is a bumpy road. The support of my family, friends and the wonderful people at Reaching-Out are getting me through this very difficult time.

Cuz

Carrie

One of the first things I was told after being diagnosed with fibromyalgia was that “it wouldn’t kill me, but it would make me wish I were dead.” A doctor said that to me, but I didn’t, for one instant, at that time believe that he was showing me my future. I had been ill all my life, but I had always gotten better. I did well in school, I had a lot of friends, I had an amazing boyfriend, I graduated with honors from a good college, and I had a successful career—I doubled my salary in 2 years! And I felt happy. I loved my boyfriend, my friends, my job. That all seems like such a long time ago. I first became ill when I was visiting my uncle in Brazil. I was there for 6 weeks, and during that time, I suffered from what looked like a severe allergic reaction. But then the reaction spread to my joints and one by one they began to swell. When I was able to walk, I had to use a cane. The pain was unbearable. I was 14 years old and missed my Mom more than I could put into words. All I knew was that she was so far away, and I needed her so much. But, I couldn’t travel, and even if I could, we didn’t have another thousand dollars for a new ticket. When I got home, I was still achy and tired. I couldn’t sleep enough, but no matter how long I slept, I never felt awake. I never felt rested. My parents took me from specialist to specialist, but every test that the doctors ran came back negative. I appeared to be a healthy, normal 14 year old. For the next 10 years, I was in and out of the hospital with high fevers, but again nobody could figure out what was wrong. I hurt all the time. A deep ache that I felt in my bones and muscles, especially legs. I dreaded playing sports because it hurt so much, but I looked fine. I looked like I was just trying to get out of running around the field with all the other girls. How I envied the girls with asthma and shinsplints who didn’t have to run. I’d never heard of shinsplints, but I wanted them more than anything. I learned to just suffer quietly, not complain. I didn’t want to be one of those people who were constantly whining about everything. And, I was lucky. I had a great group of friends, I dated. I did really well in school. But I was so sad and so depressed, and I wished daily that I wasn’t alive anymore. The first time I seriously entertained the thought of suicide, I was in 8th grade. My life hadn’t even begun, but I wanted it to end so badly. I just wanted the pain to stop. I found real happiness at college. I loved my school. I loved my friends. I felt like I really belonged. I was still sick all the time. I still had constant pain, but the college I chose didn’t have mandatory physical education, and that was probably the most exciting thing to me about leaving home and going to school. Nobody could make me run round and round the field anymore. I was finally free. I graduated in 1996 with a double major in English and Art History, with honors in Art History. I moved back home and found a job that I loved. I was helping to write books, I had books of quotations published in my name. I was creating entire ‘coffee-table’ books. And in 2 years I moved up from the editorial assistant to the managing editor of the company. I was also in love and living with the most wonderful man. The man I knew I would be with forever. The One. And then 10 years after I first got sick in Brazil, it all started over. I woke up with a really bad allergic reaction, all my joints started to swell. I went from hospital to hospital, took test after test, tried anything and everything, but I kept getting worse. I had to leave my job because I couldn’t concentrate, I couldn’t get the pain to stop, I just couldn’t work through my pain anymore. I couldn’t get up and down the stairs without help. I depended on my boyfriend for everything. He slept outside my hospital room every single time I ended up in hospital. He came to every appointment with me. He made me feel safe, even though my life was falling apart. And he believed me. The worse I became, the less people believed me. My family didn’t understand, my friends didn’t get it, my doctors didn’t even know what to do with me. Nobody could help me. I read that the climate in Arizona might be better for me than the humidity of New York, so in May 2001, my boyfriend and I left everything and everyone behind and moved to Arizona. I continued to get worse. My depression was so severe. I felt like I was ruining my boyfriend’s life. I felt like he was stuck with me and that he deserved more, he deserved someone who was healthy, someone who didn’t need him to help them do everything. By December 2002, I was completely suicidal. I stopped getting out of bed. I had a complete nervous breakdown, and suddenly I realized that if I didn’t leave Neil, I was going to ruin his life because I was going to die. So I left. Without any discussion, without any reasoning. I just ran away. I knew I needed to get my life under control the best way that I could. I wanted to be in control, so he could be my equal, so he didn’t have to take care of me and miss out on just enjoying life. Needless to say, I didn’t make it. I couldn’t live alone. I couldn’t go back home either because I had hurt my boyfriend too much. He didn’t love me anymore. But I had to stay in Arizona because I knew that the humidity elsewhere made me worse. So my Mom left her job of 22 years, all her friends, her home of 24 years and moved out here to take care of me. She didn’t stop to find a job, she just left everything and came. It’s been a few months since she’s been here, and my health just seems to keep getting worse. I think about suicide every day. I’ve even tried to convince my Mom why I need to die. Why I need the pain to stop. But the thought of leaving her alone stops me every time. My health is my full-time job. I see a therapist, 2 rheumatologists, a GP, a neurologist, a chiropractor, a naturopath, a massage therapist, an acupuncturist. I spend more than $1500 a month on alternative treatments and that doesn’t even begin to account for all the medications I’m on. I can get out of bed most days now because I’m on a high dose of morphine. The first drug that has actually helped me, but because it is such a strong drug and because I’m not dying, every month I have to fight my doctors to keep me on the morphine. And it’s a double-edged sword. I need the medication so that I can have some kind of quality of life, but when I ask for the medication, it makes me sound like I’m a drug addict. Even though it’s a fact that narcotics do not affect people with chronic pain the same way. We don’t get high. We don’t need higher and higher doses. But I don’t know how to find a doctor who believes that my pain needs to be treated. I don’t know how to make someone believe and understand that my pain is just as important as someone’s cancer pain. My doctors say it’s not the same because I’m not dying, but without the medications, I’m not living either. I’m 29 years old. I’ve been sick for 15 years. But I can’t get the help that I need. Because I’m not dying. I just have an illness that causes such excruciating pain, it makes me wish I were dead. Isn’t that enough?

Nikki

It is 1984 and here I am, my little girls are 9 months and 3 years old. It's Steve's night for bowling and I've just returned home from a 10-hour day at work. Whew, this "reorganization" at work is a killer, barely allowing us time for grabbing a cup of soup to eat on-the-run. I have a new supervisor and four other new associates I am training while I also learn how to handle new work brought in from California and Indiana. No one knows at all what to do if I am not there to direct their every step. I think I am "Super Mom". I have just celebrated my 30th birthday, then abruptly gotten the "flu". I'd been more tired than I ever had been the last couple weeks, but I heard on the radio that if you got sick you wouldn't get better any sooner if you stayed home and rested. I never imagined I had "mono which would never go away". Since then I've always wondered what would have happened had I not heard that statement on the radio. I was too sick, tired and stressed to go to the doctor so I assumed it was the "flu" and would go away within a couple weeks. I fed my daughters, turned on the TV. and put the baby to bed. I returned to the living room and the television, forcing each step. “I can do this" I said to myself. Feeling spent beyond words, I laid down next to my 3-year-old in front of the television. I am so thankful Tammy, the 3-year-old, has played outside so she is "winding down". I literally cannot even move. I lie there until Steve returns from bowling at 9:30 when he carries me into bed. I immediately fall into a deep sleep and wake up feeling very groggy and wiped out, but force myself to get up and go to work. Well, it is now 2003 and I'm still waiting to get over this "flu". I think of the fateful days when I thought I could "do it all". Now, I can barely take care of myself. In the first days of my illness I managed to hide it from everyone at work. I knew something was terribly wrong, but thought I would one day just feel better. It never happened. Before I was sick I was one of the most "mellow" people I knew. I could get along with almost anyone and always had a song in my heart. Now, I became irritable, forgetful and impatient. I didn't even recognize or like myself. At first, I just felt like I had mono all the time. I felt I was still doing a pretty good job at work although at one point I asked for 1 ½ weeks off due to my health. My daughters didn't understand when I told them I couldn't go to their field trips, watch their dance lessons or go to church. I had always looked very much forward to going to church because it always helped me find the strength to go on. I still tried to make sure they got there on Wednesday nights because it was so important to me that they learn about God. I remember one time my daughter was particularly insistent so I finally broke down and went along on a field trip. We had to hike quite a ways and got lost. By the end I could barely walk and I knew I would spend the next couple days in bed. It was always about priorities. My work always won out because we needed the money, but, work was hardly my priority. When I was well, I loved my work, but, as it became the only activity in my life I resented it more and more. My family and faith had always held the closest places in my heart and I had neglected both FOR YEARS. How would my daughters grow up to understand my spirituality when I couldn't take them to church? It broke my heart every day. What was this monster that had such a control over everything in my life? As time went on, things at work started to spiral downward along with my health. I went to the doctor and was told I was depressed. I said, "Yes, I am depressed. I am sick all the time." Finally, after about five years of illness, I was reading an article about a "yuppie flu" called Chronic Fatigue Syndrome (CFS). The article mentioned that if you never felt well you may have it. I knew in my heart I had the answer. I called my clinic and asked if there were any specialists in CFS. I was given a name and made an appointment. The doctor confirmed my suspicions; I had CFS, but there was no known treatment. He asked me what level of activity I could maintain as compared with before ill. I couldn't remember how it felt not to be sick every day. Then, the biggest toll was an emotional one. I was given the option of taking antidepressants, but, I hated taking drugs so decided to forego them. I heard about a documentary film about CFS that sounded interesting. Perhaps I could use that to explain to my relatives what I was going through; it was aptly named "Living Hell". But, I was still in somewhat of a denial and never watched it. If I denied being ill, could I somehow "push myself" through the day? I had never encountered anything before where I couldn't just work harder to surmount it. I didn't know those were going to soon be considered my "good" days. I started missing more and more days of work. It was impossible to "will" myself through the workday anymore. How would I keep my job and my sanity? There was a shakeup at work. In those days it was known as reorganization. All of our work was totally changing. At the same time, the pains in my body and memory loss seemed to overtake me. I could no longer function at work. It was as if, no longer afforded the luxury of doing the work I had known, my secret was out. I couldn't learn the new work or keep up. I missed more and more work days and was referred to the Human Resources area. My attendance was jeopardizing my job. I went to the doctor who put me on disability. Oh, what heaven to rest when I needed to and still manage to watch a softball game. I could handle the pain enough to function that much. My doctor told me "most patients improve slightly over time." Was I like "most patients"? I knew deep in my heart my health was still deteriorating slowly, but, I wanted so badly to think I was going to improve. How long could I continue on disability without losing my job? I knew if I started to work part time that I would be waiving any disability benefits. I prayed and hoped I was doing the right thing by working part time and arrangements were made. I was grateful to still have a steady income although I hated the work I was given. I tried to make the best of it. I worked four six-hour days, but, I knew it was still too much for me. My husband wanted to start his own accounting firm for small businesses and we needed to keep benefits. He was working part-time on getting his company started while also working temporary jobs. So, I arranged to work the minimum 21 hours a week in order to keep our health insurance. Then, the unthinkable. My 16-year-old daughter was pregnant. She had joined a local Christian youth group. Some of her "nice" friends that I knew were in it so it seemed a natural replacement for church. I was unaware until later that it was for "at risk" kids. I asked her why she wanted to be in it and she replied "to help the others". I talked with a leader and was impressed by her beliefs and caring so I let Tammy remain in the group, asking her to make sure she didn't become the one influenced by them instead of the other way around. I now knew it had been a mistake. She had taken a boyfriend who had severe family problems and we had even let him stay in a tent in our backyard that summer. Despite our talks with him about "respect" we instantly knew he was the father. He had never been able to trust adults and convinced her to do the same. I didn't choose to be sick, but now I wondered, "How can I tell my daughter I can't help her with a baby so she must place it for adoption?" I had never prayed so hard. To this day, I believe many small miracles occurred to get our family through this intact. I now have a beautiful 5-year-old granddaughter who is with a wonderful family and is in kindergarten. However, I knew my "brain fog" and pain threatened my job more and more. We heard the project our section was working on was being eliminated and so would our jobs. Inside, I was relieved. After 28 years of working, 17 of them while sick; I would be able to try to focus on healing myself. I did a lot of praying and was laid off in the first group. I had made the cutoff of "early retirement" age by one month and would be able to keep my health insurance. I also received a much-needed severance payment. My prayers were answered. That was in 2001 and we are still focusing on my trying to manage my illness and Steve getting his business built. It does well enough to support us only during tax season. He works a part- time job during the summer to help make ends meet. I feel I am no longer able to work and am pursuing social security disability benefits which I know I deserve. To go to court and convince the judges of this will be an arduous task I am told, but, a necessary one. Although I am in constant pain and can go out only infrequently, I have found reasons to be thankful. My computer serves as a lifeline to the rest of the world. I am still very grateful for my faith, family and friends. In fact, I have a new "family" of friends via my support group.

Karen (right)

It has taken me several months to put these words on paper, I believe it is because I am afraid to re-live what I had went thru, and what I am going thru now. I am not the same person I was now as I was before this illness and I miss the old me, but have slowly began to accept the new me, out of defeat, eventually I had to let the past go and deal with the hand I was dealt. It has taken me years, and I am still dealing. I was diagnosed 4 years ago but have been ill for the past 24. Twenty four years ago I was tired all the time and 'depressed' (that’s what the experts said) Drs. said that I was newly married and trying to deal with my new life. I knew I was not depressed, all my life all I waned was to get married to the man I love. My dream had come true, so why would I be depressed? Three years after we married we wanted to start having children, after 6 years of experts doing tests on only me, one intelligent Dr. decided that maybe we should test my husband. This test showed that he was unable to have children. Almost 10 years after we started trying, we finally had an answer. Then my husband did something that most men would not even consider, we decided that we would have a donor and I would try to get pregnant that way. The first try was absolutely terrible; I ended up in the hospital with an infection thru-out my body and was hospitalized for 6 days. There were 3 other attempts after that without luck. My illness flared again and once again I was depressed... I believed I was this time because of the past events, so I started taking depression meds. That was in 1993.the following year we built a new home, my husband was self employed and I had all of the money I could ever spend, and more. But I didn’t have a child. I left my husband in 1997. I was very lonely, tired of spending money on 'nothings' and depressed. I moved to an apartment, got a job, and started to build a new life. The first man I started dating was very jealous, and would punch me if another man looked my way, I had several beatings in the 2 years we were together. In 1999 my cousin had an accident, and needed a kidney transplant. We started the testing to see if I was a match, and I was, I was afraid that we were not going to be, since my great grandmother and his are sisters. While doing further testing, to prepare for the transplant, my tests started coming back inconclusive and other testing needed done. I was not worried at first, then quickly became worried as it happened test after test. I got my answer to the worries one bright April afternoon. I have Fibro, CFIDS, Lupus, Arthritis, the list goes on. I was working as a broker’s assistant in a brokerage firm and studying for my Series 7 to become a broker when my new life fell apart. All my life I had depended on my parents, then when I married on my husband I was finally independent. I had bought a house and a new car, dumped my cheating, abusive boyfriend, and was happy to have made it on my own. My symptoms became worse and I had to resign from my job, and take another job that was less secure. I was working part time as an accountant most of the time I was able to work from my home with little time spent at the office. After four month I had to resign from this job also because the fatigue became more in demand of my life. With-in months my savings were depleted and I needed to visit the local assistance office for help. I also had to take my husband to court for alimony, this I believe damaged my ego more then anything. I once again had to depend on him. I was awarded alimony, and $10.00 in food stamps from assistance, I also received help with my heating expense in winter months and my electric bill. This is what I lived on for 2 years until my disability claim was approved. My wonderful parents paid my house and car payments during this time so I would not lose either one. Daily living was a tremendous struggle, other things like gas for the car, prescriptions, and other household expenses were out of reach. My husband quickly learned to work the court system, and would pay only when he was threatened with jail time (he paid every 4 months) MONEY……….. something that I used to have an unlimited amount of became a foreign word to me. Not being the person I was before the illness was one of the hardest things to adjust to. While with my husband I was by his side helping to run the business, and keeping up with house work, mowing the lawn, plowing snow, for a while I had my own business, and was working a part-time job. His parents had a small farm, I was there for bailing hay, picking corn, raising potatoes, canning fruits and vegetables, and preparing three meals a day, 6 days a week. My day started at 6am and ended at 11pm when I went to bed to start over the next day. When we built our new house, we did all of the building ourselves, with some sub-contracting, I helped with the trusses for the roof, frame work, finishing dry wall, painting and decorating. When I bought the house I live in now (it’s a log home built in 1830) EVERYTHING needed re-finished so I plastered walls, painting floors walls and ceilings, striped and varnished the wood floors and laid carpeting. It is an accomplishment I am very proud of. I learned to accept help, I now have someone to mow my grass, plow my snow, and help with daily chores. I have had a tough time and it is still rough today. I am so thankful for family and friends, I have a caring boyfriend now that is so caring and a huge help to me. I am learning to trust again, and not be afraid to show my feelings. My opinion of my life now?? Things could be worse, accepting what I have and who I am, that I am still alive I learned NOT to say “What else could go wrong?’ because it usually does. I try to laugh and smile as often as I can, humor has helped me deal with life’s hard crashes, so please try to smile and laugh daily. My life has also been easier with the help of my dear friends involved in this support group. As strangers we became fast friends, we have worked together to bring this site to you. When one of us was not feeling well, another filled in, if we are sad, have a loss of family members or pets all of us stood behind the other one. We care for each other and you. I hope you join our small family Take care of you. Linda

Linda

RICHARD’S STORY I write these words on what I call a good day. But ‘good’ is relative. Good compared to walking around in such a haze that almost every action becomes an impossible effort, physically and mentally as if paralysed to the point of complete inertia. Or compared to resting, flat out, having cancelled today’s plans, wondering whether the activity planned for tomorrow, or the day after, will be possible. With CFS, you learn to appreciate small respites and improvements. ‘Good’ for me, today, means having rested in bed until past midday, listening to Mozart, with the window open, probably should have had some lavender oil going in an aromatherapy burner, probably should have done every possible thing to maximise my well being. At least, today, I can be bothered. Making myself a drink in the blender was not an impossible effort for a change. At least I can even write where yesterday and the day before and the day before that, and for many many days stretching back, words would not come at all. ‘Good’ means too tired to do want I had planned to do, after agonising about it all morning. ‘Good’ means feeling very lonely, confused, quite anxious still, tired enough to be flat out in bed but still able to keep going, despite feeling like my brain is on fire, and suffering from a sore head. ‘Good’ means humiliating myself, a daily event, because my exhausted brain got confused, again, and with this goes my self esteem. ‘Good’ is bad. Bad for you, probably, if you’re reading this and you’re lucky enough to be fit and well. My ‘good’ is bad enough to send you worried as hell straight to the doctor and get signed off sick. But you aren’t used to it. I am, I have to function well, and look and act healthy, feeling like this – or much worse - much too often. And I am grateful, because it could all be much worse than this, and very recently it has been, for a long time, and if I am not careful it will be again. My name is Richard. Except it isn’t. It’s what I like to call myself sometimes, when I need to be anonymous. I probably don’t mind you knowing about me and who I am, but there are people around, professional rivals mainly (and yes, I do work, a few days a month, at great cost to my health) who might just get to see this and use it to damage me, or at least I would feel belittled and compromised if they saw it. Because in many areas of my life this is my dark secret. I am in the closet as CFS sufferer in some places. I like some people to think I am ‘normal’ – it makes me feel more ‘normal’. I despair that I will ever be better, because doctors can’t decide why I, or the millions like me, are so tired and how to get us better. I have been like this for nearly 16 years and am resigned to always being like this. I’m 37 now and can’t see either how I will ever get married, have a steady relationship, hold down a proper job, own my own home, and it all looked so promising once, with my good grades at school and a good degree, and bright career prospects. I have lost hundreds of thousand of pounds in earnings, and spent a good part of my benefits and small earnings on alternative therapies that have not cured me or even helped at all. Conventional medicine offers me little beyond antidepressants to help me sleep. My relationships, when they have come along, have all been wrecked by the condition. Every day is a battle for survival, a grind against overwhelming pain and fatigue. There are MILLIONS like me around the world, with a hidden, misunderstood, as yet incurable illness, and in all likelihood there will be tens of millions more in the future, people who right now are walking around healthy and optimistic. In all the developed countries, there is a vast army of the hidden disabled, with a condition that will surely, I feel, become more recognised, understood, simply because more and more people are steadily succumbing to it. Perhaps the most telling sentence I have ever read about this condition is attributed to Dr Mark Loveless, an infectious disease specialist: “[A CFS patient] feels every day significantly the same as an AIDS patient feels two months before death (quote taken from Stricken: Voices from the Hidden Epidemic of Chronic Fatigue, edited by Peggy Munson, The Haworth Press, p.4. Meanwhile the same book reports that a Dr Dan Peterson employed a protocol called the medical Outcomes Study, to compare people with CFS with a control group of patients with various ailments, including heart disease, virtually all types of cancer, and all other chronic illnesses. He found that no other set of patients experienced greater “functional severity”. Read that again. In other words, it means that CFS makes you feel sicker than just any other illness included in the study. This is what we are up against, what we have to live with. I don’t know how I do, but somehow I do, and sometimes I don’t know why. Richard

Richard

Sparrow’s Story In April 2001, I was daily riding a stationary bike 2.5 miles, doing aerobic exercises, strength building, and working around 7-8 hours every day. I had tons of energy and was a happy person. I loved my job and my life. On my job, I was working on expanding the children's counseling program that I was helping to build, and was even researching different types of grants to start other children's programs. My high energy and dedication to my job was known to many. Up until this point, I had worked for 19 years as a counselor. Never once did I think of not working in some capacity for the betterment of others. For my life outside work, I loved my husband, still do, very much. I was involved in social causes and was an active voice in human rights. I had friends, outside interests, and did volunteer counseling for other professionals. Wow, how much my life has changed. In late March of 2001, I got a rash on my chest and neck area. This was very unusual, as I had never had a rash like this before. It itched terribly, and I ended up on cortisone, a steroid, to get rid of it. Soon after this happened, I first noticed a tiredness. This tiredness occurred only when waking up. It felt like I had not slept well. It was like I had gone to bed for an hour. Soon (I don't remember when most of this started happening), I began to feel so tired that I started to feel worried. I also started to have back pain. I stopped exercising because of the pain and the tiredness. I figured the exercising was attributing to the problems. I continued to fight the tiredness and kept working hard and not slowing down. I tried ignoring it, sleeping longer, taking herbs, and increasing vitamins. Nothing helped. Six months later, or so, the tiredness turned into utter exhaustion, and I began to collapse. I also began to have, or notice, other problems: Memory problems: At first, I only noticed small things happening. I was forgetting the names of people I didn't know well or I misplacing items. It then became so bad that I was showing up at clients' homes at the wrong time, on the wrong day, convinced I was supposed to be there. I was forgetting whole conversations, even in the middle of them, and was blanking out when doing paperwork. I would just stop and not know what to do next. It was almost like hitting a tree and being stunned. My mind would just go blank. I was also forgetting doctor appointments. I had to start writing down dates on the calendar and constantly looking at it. This helped little, however, because I still missed at least four appointments over a few months time. For example, I showed up at my Psychologist's office at the wrong time, swearing we had a conversation about that time. When I got home, I noticed I had written the right time down, but somehow told myself it was a different time. I also had to keep a daily health journal. I had to start writing down symptoms because when I would get to the doctor, I would forget everything and not know what to say. Cognitive problems: My ability to do math, even simple addition, can be a struggle for me. Numbers sometimes look foreign to me. I often also struggle with grasping the word I need or I call something the wrong name. I flip words like hot dog to dog hot. I often did this at work, including with clients. Simple everyday tasks can also pose a problem. Taking a shower can be a challenge because I forget which way is the cold or hot. Periodically I forget how to lock my car door or lower the window. I often press the wrong button and have to be reminded which one to push. I have had this car for at least three years and used that same shower for more than three years. Even writing this has taken several days with revisions. Pain: I hardly ever have incapacitating pain. Periodically I have shooting, intense pain in my upper back, arms, and legs. My lower back spasms can also be very painful. The back spasms have gotten so bad that once while walking a mile, I had to sit at least seven times in the road from the pain. But I had to walk the distance because my car was stuck in the mud. However, most of my pain is aching. My hands often ache, especially my right thumb, as does my upper back, ankles, and hips. My hands and feet will also often swell. I have constant headaches. Not the sinus headaches I am used to, but ones located in the temple and side of my head. My sinus headaches have always been in the eye and sinus areas. My pain is there every day. It makes me feel like I have the flu all the time. This impacts on every part of my life too. For example, the pain in my hips prevents me from walking at times or getting out of bed. The pain in my hands prevents me from writing or being able to use the computer as much as I would like. The pain in my thumb prevents writing at times. The headaches suck even more of my already diminished energy. Stiffness: This seems to occur when I sit or lay down for more than a few minutes. The same areas I have the pain—my hands, back, hips, and ankles—tend to be the areas that also get stiff, except my head. This is aggravating and prevents me from sitting still for more than a few minutes. It affects my concentration, ability to focus, and finish anything I’ve started. Depression: I can't tell you when the depression hit, but I do know it is normal considering my health problems. My depression is something I am trying to understand better as others around me see me depressed. I know I feel sad and tired of being sick, but it is difficult for me to see how my depression is impacting me. I do know the Effexor and Neurontin have mostly stopped the suicidal impulses. However, on a weekly basis, I would say I cry at least two or three times because of the pain and the way my life is now. Anxiety: I often feel restless and anxious. When I was working I would often have panic attacks because of what my body was doing. I think this is when I started not wanting to be around people. I was scared of what happening to me, and working/dealing with other people just took more of my little energy away. I stopped answering the phone, stopped social contacts, stopped talking with friends, and only stayed in weekly contact with my Mother and my internet “family.” Otherwise, I don't want to be around people anymore because I worry about how much energy it will take away from me. I just do not have any to give, so I do not have social contacts anymore. My husband runs all the errands. Muscle weakness: Often when standing or walking for more than a few minutes, my legs begin to feel weak, tingly, and sometimes shaky. My arms, legs, and face are also now falling asleep during the night when lying in bed. It doesn't matter which way I lay or stand, they will feel weak, get pins and needles, and go periodically numb. At times, I drop things and feel clumsy. This is especially true if I am trying to hold anything that has some weight to it. My illness has lasted now more than three years. Will I ever get better? God, I hope so! I try! And I won’t stop trying! Not until I find the all the pieces to my puzzle, which will lead me back to good health. That is why, partly, I am involved in this website. Someone has my answer out there. I want my life back. But I am also on this website because I care for others. I miss people! I miss working and helping others! This is a way for me to do it. This is how I feed my soul. And I really do care. And I really do all I can for others who live with this monster ruining their lives. So, there you go. That is a glimpse of me. My story. And my dream is to someday come to this site and wipe this story out and put in its place: Cured! To the reader of this: be happy, be good to yourself, keep searching, keep loving, and never, ever, say, “There will never be a cure.”

Sparrow

December 2.1993 I was a passenger in my friends car, her husband was driving, It was around 8pm just starting to get dark in Pinehurst Texas, we where on our way home when we where rearended at 40miles perhour, while waiting to make a turn on there road. My first thought was that I had been shot, and then David my friends husband said we've been in an accident, we're gonna be OK, before I knew it I was being pulled out of the car, and at the hospital, I believed that was the scariest moment of my life, and I know now that is when I began my journey with Fibro. I was officially diagnosed in March of 2000, after going threw so many Drs. telling me this pain was all in my head, I had attempted suicide at one point as I could no longer take the physical, emotional and the poverty I was forced to live with since I couldn't get Disability, I first applied in 11-97 and I was not accepted until 8-00, at which time I was considered Disabled for Mental Illness, this really bothered me at first but I now feel grateful that I finally got a name for the pain that I knew was very real. At one point the DR I was seeing refused to give me pain medicine, as he believed my pain was not real, and feared I would become an addict, he sent me to a neurologist who was ready to perform neck surgery, I do have herneated bulging disc in my neck&lower back, I wanted to avoid the knife for as long as I could however by taking my pain meds away I had no relief from the pain and felt it was my only option, I was in the OR all prepped and ready to go for my surgery, when the Surgeon had an emergency and had to reschedule me, I believe that was a divine intervention as I was told by the DR who Diagnosed my Fibro that would have been the worst option for me at that time, This DR actually had a tear in his eye when he apologized to me for having to go without pain meds for as long as I did, He treated my Fibro until we got a Ruemotoligest in our area, I've been threw water therapy and biofeedback, IM still on the pain medicine as I wouldn't have a functioning life without it, I also take Provigle for energy as the fatigue can be as devastating as the pain at times. I have my good days and my bad days, I now pick my pleasures and prepare for the pain that follows. I try not to get into to much detail when discrbing how I feel to family and friends I've offered great lititure to them to read up on my Disease, as that was causing to much anexity for me to always be explaining why I feel the way I do. I try not to make plans to far in advance as I can not predict the flare-ups that come with my disease, I can no longer rely on my own self so I try to encourage others not to rely on me. I feel I've come along way with acceptance, when I need a boost I can rely on this group of wonderful Fibro-folks, for now IM taking my life one day at a time. Pamela DeCarlis

Pamela

Don’t Give Up! By Kay I wanted to share my story to try to encourage all of you who are where I was. I know that when you are suffering from pain, fatigue, fear, boredom, hopelessness, and depression it’s very hard to maintain any hope of things getting better. I often worked unpaid overtime at my library, and loved every minute. My job was rewarding; I felt good about the service I was offering the community, and, although I didn’t have time to read all the books going across my desk, I was really in my element. Then my health began to slip... then crash. I was diagnosed in the mid-‘80s with Fibromyalgia. They didn’t have CFS at that time; I think they called it the Yuppie disease. I had to give up my library. I dropped out of my other activities. You know all the downside of it, so I won’t detail everything. In a year I was walking with a "walking stick" (I refused to call it a "cane".) I had a TENS unit to help control the pain, a handicapped placard, and a wheelchair for any long outings, and I was looking at electric ones. I was mainly staying home and not even walking to the end of the driveway. It hurt to wear clothes, and having a doctor tell me to "then wear a muumuu" didn’t help. I’d learned that you didn’t die from Fibro, but I wasn’t living with it, either. It was give up or fight, so I literally forced myself to start walking to the end of the drive... then farther... then farther, until I could walk a mile and back. Yes, I used my stick, but I was moving. I still had terrible days. — Weeks of going from the bed to the couch. I was on more prescriptions than I can even remember. My brain was on HOLD. I couldn’t think, couldn’t talk, couldn’t function. The pain, the migraines, the total fatigue, and the lack of sleep all took their toll. A few years ago, a friend with Fibro. told me about an acupuncturist, one who was the best she’d had. I was ready for anything.... even letting someone put needles in me. I made an appointment. I noticed improvement with my first treatment, so I continued to go back. I started with once a week, but it now varies with my need. I know there are different kinds of acupuncture, so maybe that’s why it isn’t always helpful with Fibro. My acupuncturist uses Five Element Acupuncture. I was able to go off all prescription medications. If I would learn not to burn my candle at so many ends, I might be able to go less often. I feel so good that I over-push, but I’m trying to be more measured. I know that keeping a positive attitude is helpful, too. Of course, it’s easier to raise you spirits when you feel good, than when you don’t. Things can be a vicious cycle and hard to control. Is my life "normal"? No, but pretty close.... Anyone with a chronic illness learns to appreciate the good times. I now have far more good days than bad. I’m active, and doing more than I’ve ever done, since I’m trying new things, too. Life is good. On my blucky days I try to figure what caused them. Sometimes the barometer dropped and took me for the ride, but most of the time I just wasn’t as careful with my energy or stresses as I should have been: the "one straw too many" syndrome. It would be wonderful to have the "answer" for Fibro, but until then, I try to live my life to the fullest on a day by day basis. Who knows, maybe this is my lesson in patience.

Kay

It all started basically when I was 10 right after my father passed away. I became sister, mother and father until I got married. I had my first surgery at the age of 14, and was molested at the age of 13 by my mother's boyfriend. My health just got worse and worse, had many surgeries, and was told I was sterile and could never have kids, but they couldn't explain why. So at the age of 13, I was prescribed Demerol for the pain, which my friend at the time, (her dad was my doctor), knew I wasn't a complainer unless I really did hurt; he just couldn't give it a name. I saw psychiatrists 3 times a week; they knew besides my home life I was really in severe pain. But, I continued on and pushed myself to play basketball and be a cheerleader in school. Then, when I hit 9th grade the pain got so unbearable I had to quit. I started dating at the age of 13 and I always dated guys at least 21, because I acted like an adult and had the body so the guys knew no difference. And then a miracle happened at the age of 17; I was pregnant with Dennis (who is now 25), 2 years later Chris (23 now) and then my baby girl, Tiffany (21 in Dec). I was married, but only married to get away from home. When Tiffany turned 2, I had to have a complete hysterectomy. And every day my health deteriorated. I got down to 89 pounds and couldn't gain weight. By this time, my doctor had passed and I had to start my search all over again. And my husband at the time, I guess, was in denial. But our marriage lasted 14 years. Then, the worst battle with this flared up and my son Chris took care of me. I was bedridden and also trying to complete my teaching degree; the only time I went to class, due to my illness, was to take my test. How I passed, I've never figured out. But, I had a 4.0 G.P.A. Since I was bedridden and my children were taking care of me, my ex got married and she hated the idea of him paying child support. So, they got an emergency hearing to remove my children to live with him. To help himself, he planted some marijuana in my house and told the police where to look. Well, needless to say the battle between him and I was on, for the children. Then, I found this wonderful doctor who is a very good friend of mine now, and he got me on the right track and helped me get my disability. My baby sister is who found him for me. So I got my children back and found another man who loved me too much. But, he supported me and helped me battle this disease. A year after I traveled miles once a week to see him, I got a call that my baby sister Lisa had died in a car accident. Leaving behind a daughter, 6, and son, 1 1/2. Knowing what that did to my disease made it really flare, and he made sure I had the medication I needed; the only thing is, I didn't take it as prescribed. In fact, my mom came real close to losing me as well. I have always written music and always sang in the choir at church, but I couldn't get myself to do any of that. I had become a hermit, where normally I have always been very outgoing. Even dealing with this disease, I made myself be that way. I married again, of all days, on a Friday the 13th on a full moon, which actually lasted 2 months. But, we didn't legally divorce for 2 years. I then went and got my truck driving license and drove for 6 months knowing he would give me a divorce. It is very hard to live with these diseases. There are times I have thought about suicide, but then I remembered how it felt to lose a parent and didn't want to put my children through that. So, I made up my mind I wasn't going to give into this disease. Then I started getting connections in the music industry and wrote songs and went to Oklahoma City (my cousin owned the studio) and started recording demos, met major stars and even sang on stage with George Jones. I thought I was in heaven but was still in severe pain. I turned down 3 contracts with managers to go on the road. Then, I bought a computer and that is when I met my soul mate. And he wrote a letter to tell everyone just how much he appreciates me being involved; in fact, his words brought tears to my eyes. He is such a wonderful man. And he supports us in every way he possibly can. I am originally from Arkansas and moved to Wisconsin to be with him since my children are grown and he still has Brandon at home who is 14, and was severely burned over, I think, 39% of his body, mainly on his face and chest. He has more cosmetic surgeries ahead but is doing wonderfully. So, the poor man is dealing with my sickness as well as being there for Brandon (which I wouldn't want it any other way). But, when he turns 18, we are moving back down south due to me not being able to handle the weather here. But, I figure that is the least I can do is support him with Brandon, since he is there for me. I am dealing with family problems due to my deceased sister’s children, and it is a terrible, terrible situation. I am trying to keep my health as good as possible; I have unbelievable support not just from Harrison but from the groups as well. I had no idea there were so many people out there that had this monster. I thought I was in it alone, and how do you explain something when you really don't understand it yourself. And it is hard to talk to someone who has no idea what you're going through. But before I got involved in this web site, and the group, there was no one to talk to that would understand, but this group of wonderful people knows, and understands and has great compassion. There is a big gap that I didn't talk about because of the pain it inflicts, but I am one who has always tried to keep a positive attitude about everything. But I do believe in my heart that my purpose for having this is to help others, which is my nature. And this group has helped me feel needed, where for a long time, I felt worthless. Harrison gives me my reason to get up every morning even when it is almost impossible, and I also have my faith, and my children and grandchildren. Living with this is hell, but the key is to get the right medical help and have as much support that you can get. Who knows one day God willing will find a drug to go into remission. I feel like I have another family with this group, your privacy is protected and you can share treatments and feelings and you're not judged NO MATTEWHAT. So I want to thank each and every one of you for being apart of my life, and I love and care about each and every one of you. And if I can help in anyway, you can count on me. May God Bless Each and Everyone of You, Myra

Myra

A Caregiver's story... Hi Karen, I just wanted to drop you a few lines to tell you how very happy I am about your support group. It has really opened my eyes to a problem I never knew was around. I don't mean to sound stupid or anything like that but this sickness you all have is very new to me. Let me start off as an outsider that has never dealt with this problem--please. As a person that likes to help people and I guess somewhat of a sucker when it comes to people in need I had a very hard time understanding what was going on with my most beautiful fiancée and my soul mate. I guess I didn’t understand the constant complaining about pain that she said she had and still does to this day. Maybe before I start you should let you know a little about me. I am a 50 yr. man that hasn't missed a day's work in his life with sometimes working 2 and 3 job’s. I’m used to working 10 to 16 a day. I have been divorced for almost 15 year's now with 3 beautiful children and 2 very special grandchildren. My grand-daughter is a model for Kohl’s department stores -she is 6 year's old. My daughter and I had a falling out a few years’ back and I don't get to see the grandkid's much but that doesn’t change my love for them or my daughter. I have a son that was severely burnt on 39% of his body with the burn's being to his stomach -chest-arm's-hand's and his entire face. He has had 14 surgeries so far and a few more to come. I had really thought that after I seen my son laying in the hospital where I as a Dad could not even recognize him I had come to thinking that life doesn’t get any worse. I think it was then that I myself considered ending my life. My thinking was that if I was put here on this earth to do nothing but suffer then why be here? My son was on an amnesia medicine so he doesn’t remember his pain or suffering for the 1ST seven week's he was there... (a total of 91 day's). But once he came around and he knew just what happened to him and the way he handled it just simply amazes me.(thank god I changed my mind about ending my life)..I look up and respect him so very much word's can't describe. Anyway---it brings me back to you all. I met Myra on line almost 3 year's ago. At the time I never knew she had this sickness. We got together by me going down to Arkansas and her coming to Wisconsin. Man we spent a lot of time on the computer talking and also on the phone. To make a long story short--Myra came up to Wisconsin in Jan. of this year and I asked her to marry me... (THANK GOD SHE SAID YES).She moved here in March of this year.We got our own place to live (because I was living with Mom at the time-she's 84 and I was taking care of her) Anyway-Myra had mentioned this problem she has before she moved up here and I told her I was good with it and we would work it out together.. Oh my god-----did I ever get a reality check after we have been living together. I’m not one for even taking aspirin much less any drugs. I guess it was hard for me to understand why all the pill's?? There were times I'd come home from work and she’d be passed out at the computer not knowing I'd walked in the door. My first reaction was --she's doing drugs for the high...not knowing just what pain she was having. Like I said before I have never dealt with anything like this so I hope you understand my concern. Myra asked me to read some of the stories that have been written on the web-page so I agreed....Well let me say this---OH MY GOD---YOU VERY VERY SPECIAL PEOPLE I am truly sorry life has dealt you these cards. If I could and I had the power I would most certainly take your pain away. As honest as the Bible is I'd sacrifice my life so that one of you could be pain free. I mean that with all my heart...Myra is worried that that her disease has affected our relationship and it really has. My love for her just grew stronger (as it has for everyone in the group). I want you all to know that know matter what you all need to keep this support group going I personally will try my best to help out. I see the sunshine in Myra's eye's every time she gets e-mail or an I.M. or she is involved in your weekly meeting's...Thank you all for being there for her and for supporting her. I am totally committed to giving her the best life that I can. She knows my Love for is never ending and the help you give her just help's put that in concrete!!!!! I wish you all good luck and most important---GOOD HEALTH...never give up please never give up!!!!! I love you all because of the love you have given us. Thanks for listening Harrison P.S. We would like to have you all at our wedding...Just as soon as we set a date o.k.

Harrison