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!!
15 comments:
Hi Christina! I was so glad to find your blog when I read the CFS newsletter. I, too, suffer from CFS and also Fibromyalgia and have for about six years now. However, I didn't get correctly diagnosed until a couple of yrs ago. Just like you, I was a type "A" personality - always going, going, going and doing, doing, doing. Even though my kids had left home by then, I had been a single mom and now was a new grandmother. I had worked so very hard for 10 yrs to finish my BS and M.Ed. while working full time, raising the kids, and maintaining a social life too. I was in the best shape of my life physically even tho in my late 40's --I did lots of exercising and had quit smoking. I had taken on a new position as Director of Admissions, Assessment, & Counseling of a 2-yr college, experiencing two of the most oppressive, bullying bosses (consecutively) and several angry, negative subordinates under me. My parents kept telling me I was going to make myself sick and sure enough, I had an intense gall bladder attack while attending an out-of-state work-related conference and had emergency surgery to remove it. Depression soon followed and I started dragging. But even so, I wanted out of my current position so badly that I offered to write a grant proposal that would put me back into the work I loved (with disadvantaged students) and relieve me from the pressure that was ruining my relationship with my daughters and my boyfriend. After spending 3 mos of my "free" time to write this 100 page, 1 million dollar grant, I was devastated two months later to find out I had missed the funding by 3/4 of a point. Then both daughters moved out w/in a yrs time, the boyfriend betrayed me and I started going further and further downhill. Next, there were 3 car accidents in a 2 yr period of time, followed by a cervical fusion in my neck, and I found I could not hardly make it up the stairs to my bedroom.
When my therapist said I had major clinical depression and needed to take a break, I agreed. To make this too-long story short, I ended up marrying a toxic man (a psychologist;o) and becoming so fatigued I couldnt get out of bed. The pain became much worse too and spread throughout my body, but mostly it is like burning monster that is grabbing me by the neck and wrapped around my back and will not let go...even with some very strong painkillers.
I know this is too long, but I mainly wanted to say...YOU ARE NOT ALONE. And if your family is supportive (and your kids sound great) you are very, very blessed. My adult children and parents do not believe I am sick and often make remarks about my getting a JOB with contempt in their voice. They seem to forget when I used to throw papers in the wee morning hours as a second job (while going to school) and how active I was back then. Honestly, why would I CHOOSE to be this way...to just get out of working?
Anyway, God bless you, and I will keep you in my prayers and check on you again. Have you read the book "the Secret"? It has helped my attitude. Deb
Kristina, you are not alone! Hi, I am a 40 year old mother of 3 beautiful daughters! I, too, have been diagnosed with CFS and it has also changed my life drastically.
From the time I was in high school I loved administrative work. It's the only work I've ever done. I love everything associated with being a professional administrative assistant. and I was good! I was really good! But when CFS reared it's ugly head my work suffered. It became harder and harder to remember things that my superiors told me. I didn't know what was wrong with me and for a long, long time would not go to the doctor because I really wasn't sure what to tell him. I thought he'd think I was crazy and just lazy. One day, when my symptoms were particularly bad I made up my mind and said I didn't care what my doctor thought. I'm going to tell him what I'm experiencing and immediately, without hesitation, after explaining my symptoms, he diagnosed me with CFS. I went from a full time professional administrative assistant to part-time to eventually not working at all. It's like being in a prison that you just want to get out of. Who wants to spend their "life" in bed? I had dreams and goals. I'm too young for this, but right now this is my reality. My family has supported me, which really helps. At first my hubby thought I was just being lazy but he's come to accept it now. The hardest part was giving up my work in the corporate arena. I loved dressing up everyday and heading off for work early in the morning. It became more of a struggle and challenge to wake up early and get to work on time! I'd get there by 8 AM and, literally, by 9:30-10:00AM I was totally wiped and needed to get back into bed. I didn't know what was wrong with me. I cried alot because I didn't understand. I'm limited now in what I can do. My hubby works at night (self-contracting) and I go with him to get out of the house. My only other outings are on Sundays for church and Fridays. These also become challenges for me, but you have to try. There was so much I wanted to accomplish, especially in the corporate world and I was on my way, but my body wouldn't let me. That's the only way I can explain it. My body wouldn't let me!
Be encouraged. Try getting involved and attending a local church. Even if it is only on Sundays. Church activities can be as busy as regular activities, but you can pick and choose what you can do.
God bless you!
Thank you for sharing your experience, strength and hope. My battle with CFIDS has been a daily "crusade". I am feeling very down today, and to have your blog to read, along wtih other people's comments helps. Thank you for going "public" with you illness. God Bless You, Nancy
Hello Christina! I read your personal story of CFS on the online CFIDS newsletter. I don't have time (or energy) to tell you everything about my battle, but it is similiar to yours and the other two replies'. One difference is instead of being a type A and going all the time, I always had less energy, tired easily, and had immume problems from childhood. It all came to a head when I was hit by a drunk driver and incurred a whiplash injury at age 33. From then on the symptoms worsened and I began to suffer from severe anxiety. I have also been to numerous doctors, specialists, yes, even a psychiatrist, until I was finally diagnosed by a naturopath. She used Kutapressin injections, antivirals, and I had my silver dental amalgams removed(with the proper detox protocol). These were the 3 things that gave me significant relief. Being in the medical profession, the brain fog was the worst-very scary to look at an everyday object and cannot think of what it is called! I quit work for 2 years and was really pretty sick for that time. This was a difficult time for my family. I had always been the caretaker and I could no longer cope with anyone else's "stuff"! I gradually began to return to classes and got another degree in a different, less stressful, field. After 5 years at home, I returned part time to work 8 months ago. It has been harder than I thought, but I keep at it. I am applying for a full-time position soon and I just hope I can do it. I still have symptoms but not as severe, and some are completely gone. My kids are grown and now I have less dmeands. I keep trying to get better through my own research and my helpful, open-minded physicians. They respect me as a professional and I no longer get the "look" from doctors. (I am sure you know what I mean). However, I have also improved enough to articulate symptoms and remember treatments, etc. I was lucky to be able to take off from work with my husband's income. My faith in God has kept me going. I think he leads me to the right places for help. It does hurt that there are a few old friends that I have lost due to a lack of understanding, but as time goes on CFIDS awareness is increasing. One friend was later actually diagnosed with CFS, too! Just hang in there and research everything you can on the possible contributing factors. I will keep you and the others in my prayers.
Hi Kristy,
I read your whole blog today, after following the link from the CFIDS Association email. Hang in there, sweetie! I am 43, married, mother of a 5-year-old boy, and a former computer programmer. I was never as sick as you are, but was ill with CFS for two years. I was never so ill I couldn't brush my hair, but I couldn't make the bed. I spent most of each day in bed. I'm not totally out of the woods yet, but am hugely grateful for how healthy I've become, and for my great good fortune in finding good medical care. (I live close enough to Seattle to visit the fatigue clinic at Harborview Medical Center).
I have no idea why I improved. I made a quantum shift at one point, and that lead to a slow but fairly steady improvement. The graduated exercise has been helpful for me, once I understood how very, very small an amount of exercise to start with and what tiny, slow increments to increase with. I was fortunate enough to be able to start with a 7 minute walk each day, and now can do 15 minutes(six months later). I know some people start with something as small as standing up for one minute, or climbing a single stair. I don't offer this as advice, just to pass on what helped me.
At a certain point I accepted that I might be sick for five years, but that I might be sick my whole life. The hardest thing was not that I would miss years 41 to 46 or so, but that my son would be missing me while he was 3 to 8. It's both pleasing and heartbreaking to hear him say "Do you have enough energy to play with me?" When I've been too tired to get off the couch and join him on the floor, he suggests I make a bed of cushions, since he knows I've done that before.
I want to offer you hope: I improved and you may too. But it's double-edged. You want to take heart that if others get better, so may you. At the same time is that deep, cutting fear that you will not. And with every improvement comes that awful day of backsliding. That's one of the things the exercise gave me, a yard stick for change. If now on a bad day I feel crummy and take only a 10 minute walk, I still know what a victory that is.
I heard so many of my own thoughts in your words. You're right that staying in the moment is the best we can do. It's just awful to constantly ask "What am I supposed to do?" I also know just what you mean about doing those four hours each week. There has to be something in our lives that feels like moving forward. When I did my best I tried to keep a balance: spend a tiny slice of time each week on friendships, something creative, something requiring thinking, as well as family and basic survival.
I think a laptop and the internet saved my sanity. Being able to stay in touch with people, on my own schedule, all from bed made such a difference. Keep up the blog! I hope it helps.
-- Janet
Thanks for starting this blog, it seems to have become a great space for many people (myself included) to talk about how cfs affects them, and I think that is such a release, and so good for us. It always makes me cry when I read peoples posts, just to know that people are experiencing similar things to what I am, and to see how people have taken that challenge and grown so much from it. For a long time I hated cfs, and I was so extremely angry about it. I was angry about what it made me think and feel. Angry that I couldn't be what I wanted to be for my very young children, and my partner. I think that is what saddens me the most. Sometimes I think that if I didn't have kids I could focus on myself more, maybe I would get better? But mostly I think that it's extremely sad that I am not able to do things for them, like read to them at bedtime, keep the house clean, go to the park with them, play with them, be more positive for them... I do think I am improving now, the overwhelming feeling of not wanting to live this life has not reared it's ugly head for a month now, that feeling of not being able to handle what you have to do in a day, of having to go to bed when you want to do other things, of just not having to do your life... I have learnt that when I am overwhelmed about life, if I notice how I'm feeling physically then I am always feeling badly. I always have a headache, intense muscular pain, brain fog and the weight of exhaustion. And when I realise that I am feeling physically bad it somehow makes it easier to handle, and I look after myself a bit more...
Anyway, I hope to keep in touch this way, use your blog to talk about these things, in the hope that it may resonate with someone and maybe give them hope also, just as everyone elses posts have done for me...
Rebekah
People Please Contact Me. I am 25 y/o female.. I was diagnosed with EBV- Mono. But i have had this for 7 almost 8 months. My doc says they have to "rule out" chronic fatigue. He seems more ready to give me anti-dep meds, than do more tests. I told him I had tried medications for depression/anxiety, I had anxiety before, and this was a different feelings. Everyone assumed it was depression.. One psych doc told me she knew it was something medical. She said that right before they found Mono. I know its similar to CFS, but I have read that it really can be linked. My Stories are so similar to the ones I read. I get tears in my eyes reading these stories, because many here have the type A personality. ALWAYS ON THE GO~~ I miss it..
I really need help. I need someone to IM or Chat one on one. I just don't know what to do. In my heart, I know I have this. I need help :(. I had to quit my job, have no insurance. It's terrible, scary. I did give some info to my family on CFS, and to my friends as well. But they seem to think that if i have a few good days, I am ready to work again. I am trying to hold down 2 classes a sem, because of my fin aid. :( I wanted to make a difference in the world. I am a caregier as well. I feel guilty, but blessed at the same time with my boyfrind, because he seems to have to "HOLD Everything Down" when it comes to the responsibilities.
PEOPLE PLEASE E-mail me.. Serious people please.
MissMonicaStarr@aol.com.
Monica S
West Virginia....
Hi Monica:
My name is Linda. I live in the currently frozen Catskill Mountains of NY. Following the link from the Blog on the CFIDS website, I came your cry.
My heart cries for you. Being scared, lonely, beond exhausted and losing your 'life', are such a real symptoms of this illness.
I am working on my 13th year with CFIDS. I so remember the first few years when I couldn't get up, read a straight sentence or find help. Chronic Fatigue was little known then, much less so in the rural, depressed area that I live in. I had no money, and my doctor strayed from her conviction that I was depressed, to the wacked up Epstein Barr titers on my lab work. I had to leave my job, but wasn't able to think clearly enough to retain my medial insurance. What a horrendous time. She was very uninformed. And it sounds like that is where you are now.
I am still here. Me, Linda, the person. Learning about the illness, my 'never give up' personality,and my faith, allowed me to be me dispite this thing. I look back on the years now, and I see that I have very gradually been able to do more and more. I still can't even come close to doing what once did, but somewhere along the line, and the intense pain in my heart for my losses, I am still me and I am OK.
Life is tough, no matter what people try to convince themselves of, but you can make adjustments, one day at a time, and find yourself in the battle and in the rests. This is what you have, it seldom justs goes away. But, like so many things in life we do survive make adjustments and go on. Maybe not the way you wanted, but in better ways as you learn and grow.
If I can help, if you need to vent, if your heart hurts, your mind quits or your loves leave I'll try to listen and hopefully relate. I have been doing this for a long time.
Linda
myoldmill@yahoo.com
Also got here from CFIDS email link. Many similarities here.. thanks for posting it. Will write more later.
Hi Christina,
Although most CFS suffers are young, I am 76 and fighting it! Validation is what I wish for, too! I have accepted the illness, but still have hope that I will improve and be more the person I was at 72. I recently lost my husband who was incredibly supportive. I identify with all those whose messages I have read!
Hello, Christina. I too have CFS (for the past 4+ years), although I am now beginning to recover after following a protocol that I was referred to online at www.cpnhelp.org. This site offers very specific new information on treatment of a bacteria called chlamydia pneumonia. They are very well versed individuals, with studies to back up their approach. I had tried a variety of other approaches, with only minimal relief, but now feel about 30% better after just three months into this treatment. Hope this can help you, and others. Know that there is light at the end of the tunnel, and it's not a train!
Natalie
Hi all,
Someone mentioned reading a book called The Secret but I don't know the author and would like to read it. Please post your comment if you know. Thanks. A fellow CFS sufferer. Maxine M.
Maxine and Monica,
The Secret is written by Rhonda Byrne and is sold at amazon.com. However, it is not about cfids so I am not sure if this is the book the reader was referring too, but I have heard good reviews about it on Oprah and gaiam.com. Monica, your story is quite similar to mine (just posted part of my story under Christina's latest entry)! I came down with cfids/fm/mcs at age 21. Took me until I was 28 to get a diagnosis. I have had this for 16 years and still have high viral titers to epstein barr and cytomegaloviris. went from dr. to dr., being told "you're too young to be sick"; "you can't have a migraine every day"; "you look fine"; "you need to see a behavioral therapist"; and "you're just depressed". Then when I got married (which was later annulled) my ex and his mother told me I was just doing it to get attention. I even tried believing it couldn't be real in hopes it would go away!!!I eventually got on the antidepressant since I got tired of all the doctors telling me I needed it. It only worsened my anxiety, sleep problems, and other symptoms, and the doctors insisted that I wasn't taking enough even though I told them I became a space cadet when I took more. They just said I wasn't taking enough to help me and regarding the side effects I needed to decided what I wanted. I hope you can find a doctor that believes in chronic fatigue and who tries to help you instead of just medicate you and try to get you to go away! When I was working full time I was able to go to big time drs knowledgeabe of cfs and treatment and was better until my car accident. However, when you can't work and have no money it is hard to get the medical help you need. In fact, sometimes you can spend thousands of dollars on these good doctors and tests and they still can't help much (been there,done that), not for lack of trying though!!!Read my other comment on this blog. If you write back, I will send you another comment. Take care, don't give up, and you are in my thoughts
I need help in finding a creditable chat room for CFS sufferers as I cannot social events or even family groups. I need to talk with others who understand the isolation and desolation of CFS. Thanks! Maxine
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