Where do I begin?
Two years ago, just after having a serious kidney infection and stones, I began to feel fatigue that never went away. It was during the time of year that my SAD is an issue, so I just kept going. Other unusual symptoms began along with muscle pain and weakness, dizziness, fainting, brain fog, headaches, vomiting...the list is long. I often felt like I had the flu. People just kept telling me that it was the start of menopause, so I kept going. I became so fatigued that I had to space out the use of sick days and rest in the back seat of my car during lunch, but I just kept going. Finally, I just collapsed at home in bed, staying there for three weeks not wanting to move. My husband made me eat at least once a day. He finally insisted that I see a doctor which lead to many exams and tests. After a year and a half not understanding why I was so ill, I was diagnosed with multiple chronic illnesses including CFS and Fibromyalgia. I also have significant Insomnia, Depression, Anxiety and IBS. I'm mostly bedridden and housebound. It has been a nightmare! The challenge of managing the symptoms has been overwhelming. Medications have not been very helpful as I have drug sensitivities and resistance patterns. Counseling helped for a while. After reading everything I could find, the best self-help information I have used so far on how to live with this life change are the websites associated with www.cfidsselfhelp.org. There are so many days that I feel very frustrated, but I'll just keep going. I hope to find acceptance and peace with a new quality of life with which I can be happy.
Replies
For a year and a half almost I was housebound and closer to bedridden at many points. I cld not do anything for myself. Taking a shower was excruciating and I cld maybe 1x a wk or so. My parents or husband had to drive me everywhere (dr visits) and I had no social life. My friends all LEFT me by the wayside. It was horrible... so I know EXACTLY what you are going thru.
So many times I did not even want to be alive.... but now 2 yrs later my story is very different. it did not happen overnight but I have become MUCH better. I still do not work but I love my life now. I can get out about 15 hrs a week and do chores. Feel free to explore my website if U wld like to know what I have tried that has worked for me.I understand your frustration completely!!!
Everyone\'s journey is different and I respect yours. Luv and many hugs to you. ....
After so many medication failures, my body is ready to try alternatives and natural treatments. My doctor keeps saying I need medication. I say only if it works! Some of my friends have kept in touch, but they just don\'t understand that I can\'t just bounce back! Their comments add stress, so I have stopped responding. I\'ve been told by doctors that I am permanently disabled for working any job as there is no cure for these illnesses, but I don\'t know where to begin to manage them enough to have some kind of life. I haven\'t been able to work in 1 1/2 yrs also. Everyone around me keeps telling me to do so many different things that I feel overwhelmed by too much information. It needs to be simple. The climate makes it impossible to get outside because I have cold intolerance. I also need natural sunlight...not much of that here. Where did you start on your journey?
You start on your journey right here! I\'m so glad I read your journal! Now I understand how your journey has been so far! You\'re at least diagnosed and understand the limitations of this horrific illness.
My faith keeps me going. I\'m disabled with CFS for almost six years now. I have had to redefine my life...I\'ve lost friends, church acquaintences that I\'ve had for a lifetime, my job,.....pretty much everything. BUT, my husband \"gets it\" and my family watched me drop into this illness very slowly and everybody knew something was wrong with me! Everybody. So I didn\'t really have to prove to anyone that I was sick. I was bedridden. My story is much like others you have read by now. So you know....that I know, what your life is like.
I will pray that you find good friends here at DS. I sure have. We skype and everything! It\'s really a wonderful, supportive site and I am thankful for it!!
How bouts you journal soon, and catch us up on how you are doing now!!
I\'m not sure even what to write in a journal. My energy level is so low that I\'m not sure I could maintain one. I\'m finding that I am so sensitive to everything...good or bad...it feels like I cry all the time. My husband understands most days, but I think he is weary from trying to take over the load mostly alone. I did so much physical work inside and outside the house because I enjoyed those activities...now he tries to do it all, but it is too much. Letting things go causes me so much stress...hence the crying. I\'m not accepting the limitations very well. I still push and crash! What did you do to get beyond bedridden? I dread going to any appointments because I know how much it takes out of me for days afterwards. Thanks for your encouraging words!
Hello there, thankyou for your journal.I share a very similar story, so I really feel for you.I am a very long term sufferer of cfs and understand what it feels like to lose your quality of life to this wretched disease.I feel weak and shaky every day of my life, and am frequently bedridden.The length of my crashes has changed from months to weeks.I suffer with insomnia and am extremely sensitive to chemicals so always feel very ill after resorting to sleeping tablets.I have tried every natural sleep aid, some worked for short periods.I also suffer with muscle pain, vertigo and fainting.I collapse from the smallest amount of physical exertion.I have no stamina.I understand why you cry, I share your frustration and I\'ve cried me a river for sure.I am blessed to have a kind and devoted husband who continues to care for me.I suffer with guilt of not contributing and being a burden on him.I struggle with acceptance of this illness, even though I have had it for so long.Joining DS has saved me from depression and loneliness and given me strength and hope.My friends are very special to me and I am so grateful beyond words.I have tried numerous treatments, my story is long.Please know that you are not alone and others truly understand how you feel . Don\'t lose hope, some people do actually recover.I am here for you anytime you need me.Always stronger in numbers, hey.Take care, love and healing to you.
Hugs to these strong women. Life is such a struggle sometimes, yet we keep plugging along the best we can. I can so relate to you! After a CNS infection 4 yrs ago, I got fibromyalgia, CFS and chronic body wide Myofascial pain. My doctor says I have a progressive disease in which signals from my brain to the spine to my legs don\'t work properly causing difficulty with balance and walking.