Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Dear DS friends, chewing on what may be a significant decision. Please weigh in.
For the past 3 months I have pretty much refused to go to the doctor. I've had a raft of things come up in that time but I am fed up with doctors, misdiagnoses, treatments, tests .. so I started procrastinating, canceling appointments and voila , its the longest I've been without a doc in the last few years.
Last year was one of my toughest years with this illness. I spent 8/12 months either on a treatment or recovering from one. The side-effects of the healing process are always far more crappy than the illness itself. I still don't know if any of it actually worked.
I know my ability to work will not survive another year like last year, and I don't know if I can handle it mentally.
So I feel like just taking a year off. Living my life as best I can, trying to be good to myself with respect to nutrition, find peace within my life as it is .. and hopefully heal slowly....
Of course the risk is, there are so many things the docs say are broken, any one of them could land me in the ER without much notice.
The flip side of that flip side is that my many attempts to treat the many maladies really have not helped much, I simply spend a lot of money and expend a lot of energy without feeling any benefit.
I guess this is a rock and hard-place kind of decision. Anyone been at this juncture? How have you managed it?
For the past 3 months I have pretty much refused to go to the doctor. I've had a raft of things come up in that time but I am fed up with doctors, misdiagnoses, treatments, tests .. so I started procrastinating, canceling appointments and voila , its the longest I've been without a doc in the last few years.
Last year was one of my toughest years with this illness. I spent 8/12 months either on a treatment or recovering from one. The side-effects of the healing process are always far more crappy than the illness itself. I still don't know if any of it actually worked.
I know my ability to work will not survive another year like last year, and I don't know if I can handle it mentally.
So I feel like just taking a year off. Living my life as best I can, trying to be good to myself with respect to nutrition, find peace within my life as it is .. and hopefully heal slowly....
Of course the risk is, there are so many things the docs say are broken, any one of them could land me in the ER without much notice.
The flip side of that flip side is that my many attempts to treat the many maladies really have not helped much, I simply spend a lot of money and expend a lot of energy without feeling any benefit.
I guess this is a rock and hard-place kind of decision. Anyone been at this juncture? How have you managed it?
Thanks for this post. Yes. I've been at this point numerous
times myself. I can't help but think others on this site have been
as well. I'm sorry to hear that things are rough for you now and
that many of the treatments haven't been working.
Last year I took about a 10 month break from visiting my
doctor. Yes. I did go to the ER once, but that might've
happened anyway. That's just part of living with what we have.
Would be interesting if they've done any research on people
who maybe get better with no treatments? Doubt they have
as those people wouldn't be spending much time in doctors
offices.
I don't think there's any iron clad rules about how we
should go with these things. I feel we all find our limits and
our ways. Especially when they're financialand we don't
have any choice but to take breaks. Also,
If the stress is so high, it's probably not worth
it for you at this time. I enjoyed my 10 month break. Overall,
I also managed by trusting that the things I could do on my
own, supplements, eating healthy, being kind to myself,
would all keep my going. The doctor was still there when
I returned.
But other than that, things have gone well. Since I stopped seeing doctors, my health has improved. I still have my main symptoms, but I stopped getting all those infections I always got from visiting the doctor's offices. And of course my finances aren't so desperate now. Even with Medicare, it was costing me thousands of dollars a year in copayments.
Another good thing, I'm off the prescription meds which never worked...and no more side effects to cope with. It wasn't until I stopped seeing doctors that I realized that some of my sickness was a result of taking those pharmaceuticals.
So I have no regrets. If I get sick and die from lack of medical care, at least it won't be from MRSA or something similar. And I'll probably get to spend the remaining years of my life with a roof over my head, not bankrupted by medical bills.
We all collect info over time about symptoms that randomly happen and later realize its from our chronic illness, probably untreatable.
You only need a Dr for strictly non-Cfs symptoms, the trick is identifying them. I say cut your losses and protect yourself from medical madness when possible.
Good luck!
but i'm on so many different perscriptions for other problems that i have to have a few doctors in my life. recently moved to a new state and it took me three years to find a good doctor - actually a nurse practiionner- but i just don't talk much about cfs whenever possible. im after symptom relief and it seems that's what medicine can offer- for someone like me anyway whose been sick for so long and severely disabled now by it.
i have a history of having some strokes that have caused brain damage and a couple of weeks ago i was feeling so odd that i wondered if it was happening again. my poor boyfriend whose like "let's go to the E/R" and i'm saying if it keep ups tomm then i'll go! i just couldn't face going through all my diagnoses, primarily the chronic fatigue and all the medications and just getting that look! so i understand the protest.
sounds like taking time off would be a great thing to do if you can do it. nothing matters more than health and quality of life. you struck a deep chord in me by saying finding peace in your life as it is. for me finding peace in my life as it is, and with my self as i am not as i want to be is at the core of my being and the center of my life. these things have helped me more than anything else. one of the gifts of chronic illness (yes, never thought i would say something like that) has been a very long and ongoing sprirtual (not religious) journey that has allowed me to feel more serenity than ever before. i hope you can find this in your life. sounds like you're on the right track- just knowing it. reduction of chaos and self care help! sorry, i sound a bit disjointed and always write too much!
I understand so much what you are saying. It would be so peaceful to just essentially ignore it all at least for a while. I have one note of caution. Even if you take a sabbatical, do see at least your pcp once a month to chart your symptoms....let them note your mental state, etc. I say this because should you ever go for disability that continuity of care is very important. They go back 5 years in some cases. A year with no clinical notes would be very bad. Maybe try to keep a journal as well. Mine was what put my app over into acceptance.....just my .02
I mourned my loss of what I WAS ABLE TO do before.
I am happy. Getting out side to visit my overgrown garden is a joy. Petting one of the cats we adopted is a hobby.
Leaving behind all the meds I was on for years is one of my greatest accomplishments.
I have not seen a doctor in nearly four years. I do not miss them.