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Thank you all for everything you share. This site has meant I great deal to me, since I have found through it that there are other people who understand where I am coming from. I thank God for this resource.
I am almost 50 and became seriously ill with CFS exactly two years ago. This whole time I have been beleiving that there is NO WAY that this can be my life. In other words, I have definitely not accepted CFS as an ongoing part of my life. Friends and family don't help since they say things that indicate "So, when are you going to get better". When I have made myself face a reality of living this way for the next 25 years, I have just crumpled or been angry. So.............. I have tried CFS specialists who claim to be able to cure it. This has been at great financial cost for my family, of course. I'm in the US, by the way. I have received some help, but no cure.
I'm just now barely beginning to accept that maybe I can make living with CFS my new life. Tears start coming, even as I write that.. I don't want this for my new life. I know that this will sound horrible to some people who don't understand, but, since I'm not scared of death, I would rather die than spend the next 25 years physically miserable and not much of a contributor. But , maybe I have to accept it, and figure out how I can contribute just like I am.
I have a question, please, has anyone out there been cured? Also, do you know people who have been cured? Have specialists helped with cures? Should I truly just accept? And If I do have to accept living like this, then I want lots of purpose in my life like I use to have. How have you all found purpose with a body that doesn't function well?
I hope I don't sound like a basket case!
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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.
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!
You said some things that I really want to remember as I begin to try to accept that I am probably going to have to live with this new normal. I want to remember that resentful resistance will cause stress, which inhibits the healing process. And I need to be mindful of how there is meaning in loving others without having to accomplish a lot of actions. My life use to be so focused on accomplishing. Thank you for taking the time to write!
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....
Thank you for your words of encouragement and wisdom.
Write that novel! Did you know that the lady who wrote Unbroken and Seabisut has this condition. I was amazed at her accomplishment.
Good for you, Millie! I, too, was a teacher. I taught English and English as a Second Language t for thirty-one years, then retired. Luckily, I was able to retire before the CFS got worse.
If you were able to wade through my very long post to Dawn, you'll notice that I have multiple new challenges to deal with. I try to get a massage of my neck and back (for the arthritis) each week, but some days I just can't go. I have to drive about 15 miles to town for the massage, and often feel like a limp dishrag just walking into the place where my massage therapist works. After the massage, I often feel tired and groggy, as do many who get massages. So I don't usually get much done on those days.
I also do as much sewing as my body lets me do, maybe a few hours a day , which I split into about half hour segments, then resting in between. I have two online shops at etsy, and I also sell at a Saturday farmers and craft market (handsewn items like aprons and kids hand puppets,and catnip filled toys for cats. My husband and friends grow the catnip for me. If it weren't for my husband, I couldn't do any selling. I can't lift much (too tired) and can't look up or down much (feel lightheaded and occasionally get vertigo), so my husband does that. Then he leaves me there while hes at work, and he comes back four hours later to help me take things down and we drive home. I refuse to give up being a vendor at the market. I love the people, and I can sit down. That, my shops online, plus occasional babysitting with my 9- year- old grandson are about all I can manage these days. I wish I had the energy of my friends and husband, but most days I alternate between resting and doing things where I can sit down. Like you, Millie, I think we need to feel valuable and vital. But, it takes a long time for us to accomplish things because of fatigue, palpitations, and other problems, doesn't it? All we can do is try to get the most enjoyment out of every day. Sometimes that's hard, though. Wish I could take something more for anxiety and the palps, but beta blockers and more anxiety meds aren't for me. I've tried deep breathing, but it doesn't seem to help. Sometmes a cup of chamomile tea does, though, at least for awhile.
Keep on keeping on. Maybe one of these days we'll find some help. In the meantime, this forum has great people, and it means a lot to me.
oh what ever nex! t changing the name of freckles to localised melatonin response syndrome? Until last night I hadn't realised my CFS is also known as ME. *sighs* At the end of the day,will it make an iota of difference in diagnosis or treatment because that is what I am most interested in. A swifter and more consistent means of diagnosis, and a joined-up approach to treatment to stop the constant chopping and changing of medication between my GP and pain consultant who do nothing to inspire any confidence in them!
I'm with you on what's it matter what the name Is but, part of that is'cause you say ME and people remember the 90's and yuppie flu (goggle) and it's stuck in their heads . CFS, even a neurologist asked me what that was! We need more information for people to understand the condition and i wonder if changing the name again will just make It even harder for things to stick.
More research is important. More understanding is too. Just like cfs/me Is a massive balancing act Just to manage this condition, it is a balancing act of those two I feel is necessary.
I want to be free of this debilitating condition. I'm sure we all do on here but, until I am, I want more money going into educating the masses.
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
That's really neat Pixie! I have to admit that I hope that someday I can have one of those better periods, such as you had between 2000-2006. But, that is so great that you are able to educate youself at a doable pace during other times. Thanks for sharing!
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😌
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.
Best wishes, Diana
Not sure about Dr Bateman's rationale for It getting more funding if classed as a disease? AIDS is a syndrome and not a disease, still attracts alot of funding for research
Good point, Beverley. I've often thought about how AIDS activism resulted in some great treatments. Gay men lobbied the U.S. congress, and were very aggressive about getting drugs brought to market.This, in spite of the stigma of being gay, especially in the '80s. Surely the ME/CFS community can take a page from their book?
I guess our issue is we don't have the energy to be aggressive! things are happening just much more slowely.....much like our recoveries : )
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