Has anyone on here gotten better? How?

HI Dawn,  I'm new here, and I'm wondering the same thing.  For me, today, just sitting up and being on the computer is tiring.  I'm hoping to hear that some have been cured, or that their life has at least been improved. 

I can't always stay home, and I never know, when I wake up in the morning, whether I'll be able to go and do what I need to do. Other times I go, but it's an effort to walk around and get even minor things accomplished.  I know how you feel.

Hi, Dawn-

Thanks so much for writing this.  What you say expresses how I feel on many days.  You're not a basket case.  =)  I think all of the feelings you talk about are normal with this illness and other chronic illnesses.

I've lived with CFS for about 27 years, but I didn't know it and it didn't become disabling until I had a major surgery 11 years ago.  Even then, it took me another 2 years to figure it out.  I've also spent a lot of money and invested a lot of hope in CFS practitioners.  I'm seeing someone new next week who has CFS herself.  She wrote on her website that there is no cure, and I felt despair.  But some people do get back to a higher level of functioning, even if they're not cured.  

I've fought, and still resist, thinking this is how the rest of my life will be, and not sure how I'll get through.  I use Mindfulness tools and am considering Cognitive Behavioural Therapy to cope.  And medication.  Those who do this without medication amaze me.

I think we have to redefine purpose.  Work used to be where I had meaning.  Now, for me, it gets very basic.  Can I love the people in my life, be a good friend in the way I'm able, learn something, contribute in ways such as this Forum, be compassionate to myself and others?  All of this is a work in progress for me.  

Living with the unknown can be maddening.  I allow myself to feel sad, and then let the feelings move through.  One counselor of mine said, "Say 'yes' to what is."  That's acceptance.  

I DO know that resistance, depression, etc. causes stress in the mind and in the body.  Stress inhibits the healing process.  So any healthy way I can find to relax, rest and let go, whilst seeking out healing help, is my goal.

I will post here if I find anything that helps.  Keep communicating!

Hi Dawn,

Firstly, you are a brave person to wear your heart on your sleeve and say what you have said...I know from others I have spoken to that this is how they feel too. Please don't give up though, even though you are feeling quite low at the moment take each day as it comes and concentrate on what you can achieve...little things, for me its just the fact that some days I can actually sit on my balcony and watch the river boats go by. You see I am virtually housebound, I had to give up my job as an English teacher in February and can no longer drive or walk outside. That has hit me hard. Yes I do get the comments such as 'you look ok maybe you need to take some exercise,' but now I just ignore them because people don't understand because CFS(ME) is by and large an invisible disability. Yes it is a disability and I object to it being called Chronic Fatigue Syndrome because I am not just tired/fatigued, I am in constant pain and at times greatly anxious and depressed. It is every bit as debilitating as the majority of disabilites because it is so broad in spectrum and so life changing.

You are not a basket case you are someone in need of care and attention, you are a vital humanbeing who deserves to live a life with dignity, quality and respect. No you may never get back your previous health status but you will find things to do that make you feel valuable and vital...just work at it. Me I'm going to write a novel or something along those lines...due to fatigue it may take years but I'll do it...find your 'thing' and aim for it...you can do it and you will. Just take heart you are not alone. Good luck and hang in there....

I'm afraid I haven't found a cure yet, but I can report that I have found my purpose in life through studying, first by correspondence courses and lately with on-line courses. These can be done at my own pace - that is according to how I feel, and it gives me a great sense of achievement. I also did courses at a local university, who were very understanding of my difficulties with extension to assignments and a classmate recording lectures when I was housebound. I started with ME/CFS over thirty years ago, but it hasn't been constantly at its worst during that time, i've had better phases. I managed to work part-time for 6 years in 2000-2006, but this contrasts with the difficult times when I could hardly walk. I just want to reassure you that life with CFS is possible, if you find your own purpose fitting with your interests, capabilities and limitations. Some people say that highly motivated people are more prone to develop CFS because they push themselves, so you need to find new channels for your efforts. I wish you the best. Pixie xx

Good question, same answer here

But I feel pacing and routine really helps(or isn't as painfull), that's really eating sleeping everything down to medication timing too

Hope that helps a little😌

Hi, Dawn--

I do know people who have gotten much much better. For instance, one friend can now lead a normal life, even climbing all over her hillside to do gardening and pull weeds. Another friend also went from terrible to normal. Another note of hope: a lot of research is now being done, all over the world, by some of the best and brightest. At Stanford University, a leading geneticist, Ron Davis, is researching ME/CFS, and he's extremely motivated--his son, Whitney, is very ill with this disease. At the University of California at San Diego, a major research paper was just published, that will move the understanding of ME/CFS forward. I do understand how very hard it is to accept and live with this illness. My struggle has been how to feel good mentally when my body is so sick physically. Also, how can I maintain hope for improvement while still accepting that I'm so ill right now? I've pretty much found that I can be accepting and hopeful at the same time, though it is sometimes walking a very thin line. Also, my definition of purpose has changed, by necessity. Before this illness, my purpose in life was largely driven by my satisfaction in my career. I had to give up that career. Now I find happiness in everyday things, and try to live in the moment. I also try to give back to the ME/CFS community by posting on this forum. I would be very wary of any specialist who says they can cure this illness. I've read so much about ME/CFS, including the state of current research, and I've never read about a cure. There is, however, treatment for some of the symptoms. For example, I had racing heart problems, which was successfully treated by a beta blocker. There are many people out there who are looking to take our money, taking advantage of the fact that there is no known cure for ME/CFS. I'll never give up hope. But in the meantime, I'll focus on whatever it is that I can do, rather than on what I can't do.