Chat Group

Harriet and Rebekah posted comments to my blog about having a chat group. I think that is a wonderful idea! I have no idea how to set one up but Harriet said she would be happy to do it so I will let her take the lead on it. I think it will be a great place for us to talk and help each other cope!

Harriet, let us know if you need any help and give us the directions to join the chat when you have it started. I look forward to chatting with you all!

I will continue to blog so I hope you all will continue to visit here!

Kristy

Connection

This has been so wonderful for me! To hear all of your stories and your encouragement has really helped me to understand I am not alone and I can still live a meaningful life. It is so important to me to live in service of others, to have a life of meaning that extends to the greater good, and the last few days have really shown me that I can still have that even though I have CFS!

I started this blog as a way to help myself deal with this illness and as a way to reach out to others that are struggling, coping, suffering, surviving, and living with this illness. I wanted to make a difference in someone’s life. The stories you have shared have touched me deeply and shown me that I AM reaching out to others and we CAN make a difference in each other’s lives!

One of the things that was hardest about this illness was how isolated I felt. It is a very lonely disease. There are no telethons, parades, marathons, or celebrities that make this illness visible to the public. I don’t really look sick. Most people I tell about my illness have never heard of it and the name Chronic Fatigue Syndrome really makes them go “huh?” “What kind of illness is THAT?!” “I’m tired too, do you think I have it?” I know they are well meaning and just don’t understand so I try not to get too discouraged! But it does make me feel very lonely. Like I can’t really quite get people to understand and recognize that I am sick. They think I can just sleep and feel better. First of all, I wish I could sleep, and secondly, if I could sleep I wish it would help! Sometimes, when I don’t feel like explaining my illness I just say “I have a neuroimmune disorder. It’s like MS”. Everyone knows what MS is so they nod with understanding and I don’t get anymore questions. Of course I feel guilty when I do this because I feel that I am doing a disservice to the disease and the millions of people like me that have it, but I can’t be an advocate every day. I get tired and I need to just have people understand that I am sick. I need to feel connected, if only for a moment. I don’t want pity, just validation.

This disease is isolating because people don’t understand but it is also isolating because of its limitations. Human contact is not something I have much of these days. My husband and kids are pretty much the extent of my social circle. I don’t get out of the house much anymore. The occasional grocery store visit is about the extent of my travel. This really limits the amount of human contact I have. Friends don’t call much anymore. They have lives to live too and they are just as busy as I used to be. I am not angry or bitter and I don’t blame them. I don’t know how I would act if it was the other way around. Maybe I too would have trouble finding time to visit them. I know it is hard for them to see me like this. It is a grief process for them as well. I remind them of how their lives could change at any moment. I remind them of how fragile life really is. That can be hard for anyone to take. Life is difficult, for all of us in different ways, and it is hard to be around someone that reminds you of that constantly. I know they still care. I get emails from them and when I see them in a chance meeting at the grocery store we hug and catch up and I can see the concern in their eyes and hear it in their voices. I am hopeful that someday things will change, but if they don’t I will find other ways to connect. Like this blog!

By writing in this blog I am less isolated. I can get my feelings out, share my experience, and make connections with others like me. I feel connected again. When I read the stories of others on this blog I feel intimately connected and I feel like I am doing something to make this disease have meaning in my life. And most importantly I feel like I am no longer alone.

Thank You!!

I just want to tell everyone that posted comments to my blog thank you! It was so wonderful to see all the comments today when I checked my blog! It is amazing how much hearing about how others are struggling and coping helps make this disease seem more manageable. I was touched and brought to tears at the stories you all shared. I am still re-reading all the posts, trying to take in all the information and the sentiment in them. They mean so much to me and I can identify with something from every single post!

After I digest all the information I plan to post a blog that talks about all the thoughts and feelings I have regarding the posts from today. It is so overwhelming (in a great way!) to hear from so many of you that are dealing with the illness just like I am. I knew I wasn't alone, but I felt alone because I didn't really know anyone that had the illness. I had only read about it in books and online. Now I feel like I have found others just like me that know what I am going through and it means so much to me!

I hope you will continue to check my blog and post your comments. Together we can make a difference to each other and to CFS!

Thanks again and good luck to us all!!

One Year

I am having a particularly rough time right now. I am in a dark period. Hope is hard to find. I try so hard to beat this illness but I just can’t seem to win. I lay in bed unable to sleep each night and hope and dream about the future. I think of all the things I want to do. I make plans. I am always confident that I will be able to accomplish them. Then I finally drift off to sleep and dream about my life as it was only to wake up to the reality that all that was and all that I dream of is gone.

I really am trying to accept this and fight to live life to the fullest, but I don’t want to accept it. I don’t want to change the way I do things. I don’t want to be limited. I want my life back. I want to be the person I was before. I want to go hiking again. I want to walk and run and work in the garden. I want to take a shower without becoming exhausted. I want to cook and clean and do my own laundry. I want to go to the grocery store.

Spring is coming, or so the calendar says, but I don’t want it to. Spring is the birth of new life. Spring is a beginning. Spring is hope. I always look forward to spring. It is my favorite time of year. The flowers begin to bloom, the air smells fresh and clean, the birds sing, it is just such a beautiful time of renewal. But how can I face another spring from my bed? How can I continue to watch time march on without me? This year spring means one year. It means one year of this hell, one year in bed, one year of relying on others, one year of not being able to take care of myself, one year of sickness, one year of struggle, one year of sadness, one year of pain, one year of watching life go on around me. One year.

I don’t know if I can do this.

My Story

A little over a year ago I was an active, driven, and successful woman. I was a single parent with two children, a full-time college professor, and a full-time doctoral student with many hobbies. I exercised nearly every day; walking, running, strength training, yoga, Pilates, and various dance classes kept me active and in shape. My fiancé and I loved to hike and bike and our family would go camping and canoeing every summer. I loved the outdoors and spent as much time outside as possible. When I wasn’t outside I was seeing a play at a local theater, going to the symphony or opera, going to the movies, art shows, craft fairs, whatever struck my fancy. I never sat still. I was always on the move. That all changed drastically in March of 2006.

It all started in October of 2005 when I was volunteering after Hurricane Katrina. I had been deployed with the Red Cross to New Orleans and was working in the Ninth Ward and St. Bernard Parish providing mental health services to hurricane survivors. The days were long and the conditions were harsh. I lived in a shelter with about 100 other volunteers and we worked 12 hours a day. I loved what I was doing. I felt useful, like my life had meaning and purpose.

On day 5 of my two week stay I woke up and my face was swollen up. I saw the staff doctor and he said it was likely a mold allergy. They moved me farther from the mold growing in the shelter and things cleared up. I continued my work and didn’t think much more about it. Then on day 12 I woke up so exhausted I could barely get out of bed. I decided to take the day off and sleep. I knew I needed the rest. I hadn’t had much time to myself and the long work days, crowded living conditions, and lack of sleep were getting to me. I enjoyed me day of rest and the next day went back to my routine. I left Louisiana two days later and went back home, back to my life.

Once home I jumped right back into my old routine. I went back to my mothering duties, worked full-time, and continued with my doctorate in psychology. I continued to exercise and remained active in all my usual ways. Something didn’t seem quite right because I was quicker to tire than I had ever been before but I chalked it up to stress and too many responsibilities. I kept going.

In November of 2005 I got a really bad sinus infection. They treated it with antibiotics but it never really cleared up. It kept coming back. I had four more by March of 2006. Then in March I got really sick. So sick I ended up in the emergency room because I got so dizzy I couldn’t even stand up. The doctor there gave me a steroid shot to reduce the inflammation in my ear and sent me home. Two weeks later I was in the hospital. I couldn’t walk. My legs did not want to go. I felt like someone had put a thousand pound lead suit on me. I couldn’t raise my arms to brush my hair. I couldn’t talk because it took too much effort. I couldn’t swallow, my vision was blurry, I was dizzy, I had a strange rash on my arms, I felt sure I was going to die.

The doctors ran every test known to man. Nothing. How could that be? How could I be that sick and they find nothing wrong with me? After three days they sent me home with follow-up appointments and visits to specialists. Over the next seven months I was poked and prodded and subjected to some pretty painful tests including a muscle biopsy. The diagnosis went from Myasthenia Gravis, to Multiple Sclerosis, to Hypokalemic Periodic Paralysis, to Polymyositis, to a brain tumor or possible cancer. I was not getting better yet nothing was wrong. I was convinced I was going to die of some mysterious illness and even saw a lawyer and wrote my will. Finally, after months of agony, I was sent to a neurologist at the Mayo Clinic in Rochester, MN and was told I had CFS.

I was crushed. How can this be? How can that be my diagnosis? Doesn’t that just mean you are tired? I am so much more than tired. I can’t possibly have chronic fatigue;-I don’t even sleep very well! No treatment, no cure, what do you mean? As I sat in that doctor’s office, tears streaming down my face, my mind raced with these thoughts and so many more. What did this mean? What was going to happen to me? There were no answers.

For months after the diagnosis I refused to believe it. I wouldn’t even talk about it or tell anyone. I refused to read anything about it. I just knew the diagnosis was wrong. It had to be something else. It had to be something they could fix. I am only 39, I would think. This can’t be my life. There has to be something wrong with me. Something they can treat. How had I become this person who could no longer shower on her own, could barely get out of bed, and was almost completely reliant on others for her care and the doctors be unable to treat me? How could not one single test show what was wrong with me? I was angry and I was in denial. I wanted answers and treatment. I wanted to get better.

Time has gone on and it is now almost a year and a half since my trip to Louisiana. Almost a year since I became completely disabled. I have finally started talking about my illness. It has been very healing to talk about it. I have told my family and friends and I started this blog. I have finally begun the long journey of acceptance. But as I accept what is happening to me I refuse to become complacent. I may be sick and my life may have changed dramatically, but this illness cannot change who I am or what I want in life. It may alter what I can do physically and even mentally at times, but it can’t change my hopes, my dreams, my desires, or my soul. I am a fighter. I will fight this disease and I will win. Winning may not mean that I recover, but it will mean that I will go on living and I will live life to the fullest. I will continue to enjoy my family. I will find new ways to be active with them and on my own. I will complete my doctorate. I will find ways to feel productive and fulfilled. My life will have meaning. I will fight.

Sick and Tired

I am in hell. I am so exhausted I can't function. I slept until three this afternoon. I am dizzy and I can't think. I need to work but I can't focus on the homework I need to grade. My body is on fire with pain. I am sick and tired of being sick and tired. Maybe tomorrow will be better.

Reality

Reality has set in again. For about a week or so I have not been able to sleep very well and I am feeling much worse again. I lie in bed waiting for sleep to come. The hours tick by. Slowly. So very, very slowly. I am exhausted but sleep eludes me. I finally drift off at four or five in the morning only to wake again in a couple of hours. So tired, but so unable to sleep.

As I open my eyes reality immediately sets in. The pain hits me like a freight train. My muscles hurt, my joints hurt, my head hurts, my entire body is filled with pain. My muscles are weak and tired. It feels like someone has put 100 pound weights on my legs and arms. I can barely lift my arms to wash my hair. I have to use a shower chair to bathe and I can only muster the strength to do that once or twice a week. After walking only a few feet my legs feel like I have run a marathon and I have to rest. My vision is blurry and my skin breaks out in strange rashes. I can't concentrate to read. I can't think. My mind, once sharp and quick, is now slow and works overtime to find the right words. I can’t remember things that were just said to me. I lose my train of thought in mid sentence. What is this mysterious ailment that has disabled me so? How can something called Chronic Fatigue Syndrome be so disabling? It sounds like such a wimpy illness. Chronic Fatigue. Shouldn’t that mean I am just tired all the time?

I certainly wish that was what it meant. It would be wonderful if I were just tired. If only I could rest and get better. The name certainly belies the illness. All I do is rest. It seems like my world exists between my bed and my couch. Rest does not restore my strength or make me feel any better. And most of the time rest is just an illusion anyway. It is difficult to rest when you are in pain and sleep eludes you for days or weeks at a time.

Today was a particularly bad day. I couldn’t get out of bed. I was too exhausted and in too much pain. I was in bed all day today. I slept off and on until 7pm and then I just laid here and did nothing. How can this be my life? How can this be me? How can I be this sick and the doctors be unable to find any objective evidence of my illness? Why don’t they know more about this? Why can’t they treat it? Why can’t they find the cause of it? I don’t understand. This can’t be me. This can’t be my life. I want my life back.

Four Hours

Four hours each week I leave the house to go to my internship. I am completing my doctorate in psychology and I still have a few internship hours to finish. I should be done by now. I should have finished in August. It is now February. CFS reared its ugly head last March and by June I was unable to get out of the house anymore so I had to put everything on hold. I went back to my internship in October but only four hours a week. Some weeks I can't even manage four hours.

Four hours. It seems like such a small amount of time in the grand scheme of things but those four hours are a precious gift to me. They exhaust me, but they also exhilarate me. Those hours make up the sum total of the time I feel connected to the world each week. They give me purpose and hope. They make me feel like my dreams might still come true. They make me feel smart and useful. They set my mind on fire again and they make me remember why I chose to go into psychology. Those four hours each week are the only hours I am with people other than my family or someone in the medical field. My world has gotten increasingly smaller since my illness and those four hours allow my world to get a little bit larger; if only for a little while.

Those hours also make me feel sad, frustrated, angry, and very scared. They remind me of who I was before the illness and how much my life has changed. They remind me of how much I have lost. They remind me of how uncertain my future is. Is this my life? Is this what I have to look forward to? Will things ever change? Will I be able to have a career? Will I be able to be an effective wife and a mother? Will I be able to travel the world as I had hoped, go camping, take my family canoeing, and go hiking in the mountains? Will I run or even walk around the block again? I don't have the answers to these questions. No one does. No one can tell me if I will ever recover from this illness or what my life will look like in the future.

We all live with uncertainty. That is part of the human condition. No one has a crystal ball. Even if I was perfectly healthy there would be no guarantees that I would achieve my dreams. We all have to make the best of what we have at any given moment in time. And that is all this is. A moment. It may feel like a lifetime, but it isn't. It is just now. I don't know what the next moment will bring.

I have to continue living and trying my best despite this illness. I can't just sit here and wait. I have to continue to do what I can. I can't let this be the end of my world. I can't let this illness win. I won't lay in bed and think about all that isn't. I will think about all that is. I will feel sad, I will cry, and maybe I will even languish in my grief sometimes. I will also struggle, get angry, and feel betrayed and lost. Sometimes I may even have a hard time seeing the silver lining. But those are just moments too. They will pass. I will continue to hope and dream and do everything in my power to beat this illness. And each and every week I will continue to enjoy the precious gift of those four hours.

Feelings

I can’t seem to get this blog written. I have started four different times and each time it has just been a mess. I am all over the place. I guess my writing is a true reflection of what is going on inside of me. The last few days I have been on a roller coaster ride of emotions; one moment feeling happy and hopeful and the next helpless and sad. The same event can trigger opposing emotions and create confusion inside of me. What am I supposed to feel? What am I supposed to do? How am I supposed to live?

I guess the trigger for this roller coaster ride happened two days ago. I was trying to get ready for my Tuesday internship hour (I am trying to complete my doctorate in psychology) and my husband called to discuss the “travel arrangements”. I have to have “travel plans” now for any venture out of the house. My husband drives me everywhere I need to go and then he lugs my wheelchair in and out of the van. I love him for this. He is so great about taking me anywhere and everywhere I need to go, without complaint. But as much as I love him for the sacrifices he makes for me I resent the fact that he has to make them. It makes me feel so helpless; like a child. I can’t even take care of myself anymore. His schedule is getting increasingly busy and it is more and more difficult for us to make our “travel arrangements”. I don’t want him to have to worry about me and what I need. He just got his license as a psychologist and he should be enjoying his career, not worrying about me. Yet, he works his schedule around me, takes care of the house, laundry, shopping, and cooking, runs errands, works, and gives me massages. Every time he makes a sacrifice for me I feel guilty, helpless, sad, and loved. It is so confusing.

It is the same with my kids. My daughter is in college and she often asks me for help proofreading a paper or studying for an exam. These are things I used to do with ease. Now she comes to me and says, “Mom are you feeling okay? Can you help me today?” Sometimes she doesn’t even ask for my help anymore. A few days ago she came into my room to check to make sure I was okay. When I am home alone she calls to check on me. When she and I are here alone and she is in her room she offers to take the walkie talkie with her in case I need something. She is worried about me. I should be taking care of her, instead she is trying to take care of me.

My son is a freshman in high school. He should be doing all the typical teenage stuff but instead he worries about me. He hugs me tight a lot more often than he used to and he never complains when he asks to do something and I have to say “maybe later when I am feeling a little better”. The other day I went out to get in the van to go to that Tuesday internship hour and on the passenger side window was written “Mom I ♥ U”. He is thinking of me, worrying about me. He should be worrying about what girl at school likes him, not his mother. I should be taking care of him, instead he is worrying about me.

Every time one of my children makes a sacrifice or tries to take care of me I feel guilty, helpless, sad, loved, and proud. I have raised some pretty great kids.

My family is supportive and caring. They love me no matter what and they try to take care of me. This makes me feel very special. It also makes me feel very sad. I used to take care of them. I was always available, the nurturer, caregiver, wife, mother, cook, chauffer, therapist, party planner, travel agent, peace-maker, listener, problem-solver, and nurse. I was the one taking care of everyone else. Now I need to be taken care of. I don’t know how to do that. I don’t know how to feel about that. Should I feel loved, wanted, cared for, and proud, or should I feel helpless, sad, guilty, worthless, confused, and angry? I guess for now I will feel all of the above.

Purpose

I have decided to start this blog as a way to deal with some of the issues I am facing as I struggle with an invisible illness that is changing the very fiber of my being. I need an outlet where I can express my hopes, fears, frustrations, and challenges. This blog will hopefully serve as that outlet; a repreive, an oasis of sorts.

This process has not been easy for me. My whole life has changed. Once a busy and energetic mother, wife, graduate student, college professor, and volunteer who was constantly on the go, I am now only a shell of my former self. My family and I used to spend weekends hiking, biking, camping, canoeing, going to the theater and symphony, working in the yard, playing tennis or frisbee, and so many other activities that I deeply miss. Always on the move. That was me. Now I feel it is a great day if I am able to take a shower. The simple things wear me out. After a shower I have to rest. It is amazing how much my life has changed.

But I am a fighter. That is my nature. This disease cannot change who I am at the core. It may zap my energy and change my ability to be as active as I want to be; it may limit my ability to fulfill my career aspirations in the way that I had dreamed and it may change how active I can be as a mother and wife, but it cannot take away who I am. I will continue to fight this disease and the associated stigma with every fiber of my being. This blog is one way of doing that. It is my voice, and hopefully the voice of so many others that may be struggling in silence.

Kristy