"I Have Been Robbed"
Below is a very personal story I received from a lady about losses she has experienced due to FMS/CFIDS. Each of us has our own story to tell, but I think we can all relate to Mary's story. There are millions of us worldwide who have FMS/CFIDS. This mysterious and disabling condition is at epidemic proportions, but strangely very little is known about it, especially in the medical community. My own fibromyalgia story is at www.fms-help.com/fibro.htm, and my chronic fatigue story is at www.fms-help.com/fatigue.htm. - Dominie
It’s funny how we take life for granted. I have been robbed of something more precious than gold or the most valuable jewels. I have been robbed of life. What is life? Wikipedia defines life as “human existence, relationships, or activity in general: real life; everyday life.
A manner of living: led a hard life.
A specific, characteristic manner of existence.
A source of vitality; an animating force: She's the life of the show.
Liveliness or vitality; animation: a face that is full of life.
Something that actually exists regarded as a subject for an artist: painted from life.”
I grew up on a small farm in Pennsylvania. Born the oldest of seven children there was always something that needed done. A lot of the things I learned as a child on the farm carried on into my adult life. I was always busy. Planting a big garden in the spring, weeding the garden and then in the fall canning the vegetables. I loved canning but it was a lot of hard work. Taking hours to cook down a batch of spaghetti sauce that only yielded a few precious quarts. It seemed it always tasted better or maybe it was the self-satisfaction knowing that I made it my self from beginning in the garden to the end process. Now I have learned to shop for the best buys on fruits, vegetables, and meats. Looking through the grocery store ads that come in the mail and depending on someone else to use their judgement to pick the freshest fruit and vegetables I have put on my grocery list choosing the leanest cut of meat for me as well. This I could do for myself. Now just the trip to the store riding in the car exhausts me. I do not have the energy to walk around the aisles looking for things needed. I always loved grocery shopping. Sometimes I would run into three or four friends and we would stand in the aisles and talk at length about anything. Now I don’t even want to invite friends into my home to visit, go to their home to visit or even talk on the phone. I just don’t have the energy or the life that I used to have. I just want to sleep. Sleep forever.
We had a large yard and I did all the mowing. Sometimes taking as long as three hours at a time. Throwing in a load of laundry in between and then hanging them outside to dry. Nothing smells better than air dried laundry in the country. So fresh and clean. The last few years before moving from Pennsylvania that luxury became a thing of the past. I was to exhausted to do it anymore. I just couldn’t go on. Yes to me it was a luxury being out in the fresh air not a chore. The sweet smell of the freshly laundered sheets! Now I feel very fortunate to have an electric dryer and even have family help me use them!
I have two beautiful grown daughters that were very involved in school growing up. I always joked I should put a TAXI sign on the top of my car. Running not only the two of them but many of their friends as well back and forth, cheerleading, girls basketball, scouts, school dances, movies where ever they needed to go. I was so happy when they finally could get their own drivers license. Then they could run to the store or do errands for me. I just didn’t have any enthusiasm left for all the running any more. I also helped chaperone school dances and other various activities. It was always nice to be one of the “cool” parents that was asked to help out and was loved and respected by all of the kids. I was the parents club secretary to each in their senior year. Planning senior trips, the all night party after graduation, lining up DJ’s to provide music, magicians for entertainment; we even had a hypnotist. The kids sure looked funny on stage barking like a dog, juggling imaginary tennis balls or whatever else fellow students could dream up to “embarrass their dear friends and classmates.” Shopping for hours with other parents for gifts such as stereos, televisions, gift certificates from local stores that were purchased by selling lottery tickets to raise money to pay for everything so our children could have one of the best graduation parties the school had known. Now I am sooooooooo happy I only had two children, I would not have the energy to do anymore.
Money was tight for the holidays. Santa Claus has to come no matter how you feel, how tired you are or how little money you have. I spent so many hours up late or early morning after the girls had gone to bed making Christmas presents. I made so many Barbie doll clothes at one and two o’clock in the morning that I couldn’t see straight. I wanted them to think they were store bought so I would make hooded winter jackets with one inch zippers that worked and faux fur trimmed hoods. I made elaborate wedding gowns just so Barbie and Ken would have a storybook wedding. Not to mention many other types of clothing.
I made a lot of my daughters clothing when they were growing up also. Dresses, pants and jackets. All of this I learned to do in 4-H that I attended while growing up. I made bedspreads, curtains, anything just to save money or have the satisfaction I made it myself from the skills taught in 4-H. Now I have curtains and bedspreads that are who knows how many years old again I don’t have money for new things because of not being able to work or my fingers don’t have the dexterity they once had or my shoulders burn and ache when I try to sit down to the sewing machine. Life sure USED to be fun. Now life means laying on the couch trying to stay awake more than ten or fifteen minutes to watch television.
I was involved in my church. I grew up going to a small Catholic Church. My religion carried over to my adult life. I taught 5th grade catechism for a number of years. Teaching on Saturday mornings after working all week! The children were so funny thinking that Saturday mornings were for cartoons and they should be home instead, but I always managed to make it fun so they wanted to come back the following week. Now I live with Fibro Fog always in a haze. I can’t even remember the words to basic prayers such as the “Lord’s Prayer” without starting it only to forget the second line and try and try to remember being so frustrated and having to get a prayer book out to say it. The same prayers I had taught to the children so many years, having them memorize them. The same prayers I had said over and over during my lifetime from memory since I was five years old.
I was on parish council for many years, chairperson for the activities committee in charge of church dinners, covered dish dinners for members to attend on specific holidays. One of the big fund raisers was having a “Calendar Party”. It involved a lot of work and dedication. I would prepare a huge feast, turkey dinner with all the trimmings with the help of my mother and a few ladies of the church who helped. We had to feed close to 140 people maybe more. It was a lot of fun, but I could never do it now.
Dinners at home usually consist of pizza deliveries, soup and grilled cheese and lots of already prepared foods that just needed heated in the microwave. I would never have thought of serving these kinds of meals in the past, but I am too physically and mentally exhausted to cook like I used to. It is also much easier to clean the kitchen when you throw the dish in the garbage after eating from it. Even chewing my food has become a big event. I just don’t have the energy! Standing 10 minutes to try and load the dishwasher takes a toll on my back and shoulders; aching and burning beyond belief!!
Sundays were for mass of course, I was involved with that as well. I was a eucharistic minister. I helped the priest give out communion and wine from the altar to the congregation. I also took communion to the sick of the parish directly after mass. I became good friends with some of the elderly sick participants so of course I would visit with them for a while listening to their tales of woe. How frustrating it was to not be able to do the things they loved doing when they were younger or healthier. Never in my wildest dreams did I ever imagine I would be having all the same anxieties, frustrations and disappointments myself so early in life!!
I just keep thinking all the time, there has to be more to life than this. Always exhausted always wanting to sleep 2-3 days in a row; getting off the couch long enough to go to the restroom and dragging myself back. Laying there thinking of all the things I had done in the past that I could no longer do. I used to sing in the Folk Choir. I loved singing and the camaraderie formed with other members. Listening to off key singers never letting them know they couldn’t carry a tune in a bucket. But we had persistence. Practice after practice for many Christmas Eve and Easter celebrations. Practicing after working all day. Now the only energy I have for music comes from turning a radio on. Laying on the couch, falling asleep. Lucky if I even heard one full song. Is this life? It is hard to learn to depend on someone to do all the same things you have done in the past on your own. Usually grateful for the help, but frustrated it isn’t quite the way you would do it yourself.
I used to be in the Civic group of our small town. Secretary for a while. Meetings to go to after work. Having bake sales to raise money for the children of the community so they could have hot chocolate and sit on Santa’s knee while telling him what they wanted for Christmas and how good they had been!! We also sponsored a small Halloween parade through town ending up at the community center where we passed out treats that we knew would be safe for the children. Then in the spring we always had an Easter Egg hunt for them with prizes. Children have so much life. Children have so much enthusiasm. Children have so much energy. WOW….all of this we take for granted.
I was on the election board. It was always a good time. A serious job but getting to visit with a lot of the community you would only see on that day because everyone was busy with their own lives. We would start out at 6:30 am on election day and not leave until 8:30 at night, that is if everything went okay. If nobody spoiled their ballot or if it was a light turn out so that there weren’t too many votes that needed counted. Oh yes, and I always loved those write in votes. All having to be documented, even the ones for Donald Duck and Mickey Mouse. I always wondered who smuggled their pencils in the booth from home!!!! Now I am lucky to be up by 8:30-9:00 a.m. By up I mean my eyes open, not necessarily up and about. Sometimes opening my eyes in the morning are my greatest accomplishment even though they may not stay open for long. I am also lucky if I can stay up after 7:30 in the evening. By staying up I mean staying awake. All I want to do is sleep. I think won’t I get enough of that in death? Maybe death wouldn’t be so bad!
I am sure there are a lot more things that I have done in past years. I don’t know if they weren’t as memorable, if they weren’t as important, or if I just simply forgot. My memory is terrible. I used to be able to spell anything. That was what I prided myself most in I think. I would always be agitated if I would see a misspelled word. Especially if it was a mistake made by someone with a greater education of my own. With fibromyalgia comes brain fog. Do you know how many words in this article I had to use the dictionary to find the spelling? I had to ask for help, I couldn’t even remember how the words started. It is very frustrating.
Sometimes I think I ask the most stupid questions. Things that I always knew. I was never a rocket scientist, but I was no dummy either. I am embarrassed to death of some of the things I ask now. Common knowledge, I knew once. Things learned in school and things learned from life’s lessons. Things that I have read. Now I don’t read as much. Fibromyalgia has weakened my eyesight. It is hard to read more than ten or fifteen minutes without getting a headache or just holding my head up to read. It feels as though the book in my hands is so heavy that it weighs a ton. It feels like someone is sitting on my shoulders forcing my head forwards unable to hold it in a comfortable position to read. It took months and months of writing small sentences and concentration to put this article together. I had to depend on so much help with the spelling, proof reading and typing. All things I would have been able to do on my own in the past.
I feel that when I am walking that my feet are in cement. Sometimes it is such a struggle just to put one foot in front of the other. I wonder if I am going to be able to make it such a short distance from the couch to the bathroom. I get dizzy quite often too. Standing up trying to keep my balance, as if trying to get the cement blocks off my feet isn’t enough to deal with. This is life? I used to walk for miles in the evenings after work or on weekends that too has been taken from me. Stolen.
Most of my time is spent laying in bed or on the couch. Once in a while I can get comfortable in the recliner for short periods of time. If I sit to long , my shoulders burn beyond belief. My lower back causes me extreme pain. I feel like I have been run over by a tractor trailer most days. I have restless leg syndrome which interrupts a good quality of sleep. I sleep for hours on end only to wake feeling like I haven’t slept in weeks. Extreme exhaustion. I know it is worse than that, but I just don’t have the words to really describe it. If I ask anyone what a better description would be, they really can’t help me because they have never experienced it.
Balancing a checkbook? Wow--you have never seen so much white-out on a document, or a red pen used so much so I can see where I goofed up again! I have had to pay a small fortune in overdrafts from the bank. I am talking basic addition and subtraction skills learned in grade school. When I do have banking to do; I get someone to drive me and we go through drive through. It is very hard for me to drive now, not only because of the pain of sitting but sometimes I can not remember directions to where I am going or even remember how to get back home once I am there!!!
Long hot bubble baths are no longer a part of life I once enjoyed. If I ever sat down in the tub now I could never get back out. My mobility isn’t what it used to be. Showers are a days work in themselves! Long hot showers once enjoyed are almost a thing of the past also. I keep my hair very short so it doesn’t take to much time or energy to shampoo in the shower, even so just the little bit of time raising my arms up to wash and rinse thoroughly is sheer exhaustion. Sponge baths are the norm now. An everyday occurrence which has replaced the daily showers. Light make-up is also gone from my so-called life. It just takes to much time, ambition and energy. I don’t need it anyway. I very seldom go out in public and I have distanced myself from friends. The only people to see me is my immediate family. Luckily they love me unconditionally.
When I first got sick and started seeing doctors they told me it was part of life. Stress. Working 50 hours a week as manager at McDonalds. Seeing my father dying with cancer. After my father died, they told me it was from going to the cemetery every day to visit his grave. Depression. Sure I was depressed. My life had been slowly slipping away from me for years and now my father was gone too. I loved him. He was a very special man. I knew that he would want me to go on with life though. Not miss him so much as to be depressed and give up on life! What about my two young daughters. They still needed me didn’t they?
Funny how life changes. I was and still am sick and tired of being sick and tired as the old saying goes. I thought in the past several times of taking my own life, but how? Would I want my family to find me that way? If I could only stay asleep more than two or three days in a row. If I could just sleep forever and never wake up. As many close friends and family that I have, I felt all alone. As deep as my faith is in God, I still ask why me? I always prayed to God in my lifetime that if I got sick please let me handle it. Don’t let me be harsh or bitter about it like some people. Some people take it out on everyone else. It is nobody’s fault. There is nothing they can do but love you unconditionally with all your afflictions, support you, and help you as much as they can with the little things in life you used to do that are monumental tasks now. I try to stay positive, upbeat , joke, and laugh with the few contacts I still have. Sometimes it is very hard because of the depression of not really being alive anymore.
I was also robbed of my heritage. My grandchildren are the 6th generation to live on the family farm in Pennsylvania. My parents had several acres of ground and divided it up and gave to each of their seven children as a gift. Almost four acres each. All our homes adjoining. Beautiful in the country. Like a summer home people have or a camp. Deer, wild turkeys , fox, rabbit, black bears just to mention a few of the animals in our yard. Unfortunately my husband of 32 years could not accept my illness. He was tired of always watching me sleep on the couch. He wanted more from life. He was annoyed when I didn’t want to go along to his brothers and visit like we used to do almost every weekend for years. Family reunions and weddings were too exhausting to attend. Family picnic, holidays, visiting friends together. I just wanted to stay home in my own little world. Safe in my space to sleep as long as I wanted, not having to get dressed and not dealing with ANYTHING OR ANYONE PERIOD. I am now going through a very bad divorce which elevates the stress level in my life once again. When you look perfectly healthy it is very hard for people to accept you as being sick. Even if they live in the same household and see the big change. Living a full busy life and then reducing it down to nothing.
Fortunately I have a very special someone in my life now that is very good and understanding. Even though C. is eleven years older than myself and has health problems, he is very sympathetic and loving. He helps with the cooking. He is an excellent cook too. He is always telling me rest, go to sleep, it is fine. C. tells me not to try and stay awake to be with him. It is just enough to know that I am in the same home with him or in the same room. I call him my guardian angel. He truly is a blessing in my life!!! He is my light at the end of the tunnel, for him I have to try and stay strong. I have to keep going no matter how hard the struggle, frustration, depression because he has given me so much by his compassion and caring. As long as I am here with him that is all he says that matters!
Yes I have been robbed. I have been robbed of all the things that I have done in the past. I have been robbed of all the things that I will not be able to do in the future because of extreme exhaustion and chronic fatigue. I have been robbed of a lot of good memories because of the fibro fog and fibromyalgia. My daughters and sisters will ask me about something in the past and they will smile or laugh and say remember that? I answer yes while I do not have a clue or memory what they are talking about, but I am to embarrassed to tell them that. I have been robbed of precious time with my two grand daughters. There is no energy to take them to the mall and spoil them. Shopping for special presents come from ordering out of catalogs now or small gifts of money. There is no energy to get dressed and cleaned up to take them to McDonalds for a happy meal. I have been robbed of not being able to do the things with them that I did with their “mommy”. No bike rides, sled riding, building a snowman, sitting in a theater watching a movie! Not even the joy of being able to read a story to them. I have been robbed of life. I am no longer vibrant, energetic, free spirited, a social butterfly, a volunteer.
I have been robbed of being able to work and enjoy being out in the public. I have been robbed of dear friendships. Mostly my own doing I guess. Turning them down when they invite me to lunch, go to a movie or just for a visit. I don’t want anyone to see me the way I am. It is easier to deal with what little “life” I have. I want them to remember me as they saw me in the past. Full of life, full of energy, never saying NO to anyone or anything. They always say if you want something done to ask a busy person. I feel that I am nothing but a shell. I am kept alive by my heart pumping. I am kept alive by breathing air on my own. I am kept alive by what little I prepare to eat now.
Am I really alive? I guess for all intents and purposes; yes. I am alive. Do I have QUALITY LIFE? No, not at all. I am not sure life is worth having if there is not quality. I know our trials and tribulations are to make us stronger. There must be another purpose for me which I have not fulfilled. Maybe it is tell my story so that others with chronic fatigue and fibromyalgia know that they are not alone. You are not alone. There are a lot of support groups. Even though you look like a picture of health, your affliction is definitely there.
Webster’s dictionary defines death as “the end or destruction”. I would say even though I am alive, I am also dead. My life as I once knew it has ended. It has been destroyed. I can never get it back. I have been robbed. When you think of being robbed; please don't think of it as having someone taking your materialistic things from you. Homes can be replaced. Money can be regained. Jewelry, cars, clothing and many more things you have in your life that you value can all be replaced. If you don’t have good health you don’t have anything. Please don’t take for granted all the “little things” you have or can do yourself in life. Don’t look at the everyday tasks in life as a “chore or hard work”; look at it as a gift to have the energy to do them.
NOTE FROM DOMINIE: Only those of us with FMS/CFIDS can understand the drastic changes, severe losses and misunderstandings that result from this illness. I could relate to many aspects of Mary's story, having lived through most of them myself. See my "100 Tips for Coping with Fibromyalgia" at www.fms-help.com/tips.htm. You will also find many helpful, supportive and informative articles on my homepage at www.fms-help.com. Remember that you are not alone in your suffering. Thank God for the internet where we can share ideas so easily and freely. Back in 1982 when I was first diagnosed, there was NO SUPPORT OR UNDERSTANDING for anyone with this illness. What a lonely and wretched time that was!! Finally in 1996, I got a computer and the internet and began learning about things that could help me. That was the year that I began this website www.fms-help.com to help other sufferers.
100 Tips for Coping with Fibromyalgia & Insomnia
My Fibromyalgia Story
My Chronic Fatigue Story
My Insomnia Story
What I Use
SEARCH Dominie’s FMS/CFIDS site and newsletters:
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.