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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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How many times do I have to hear this?

Discussion in 'Lifestyle Management' started by Nielk, Dec 12, 2011.

  1. Abha

    Abha Abha

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    Hi Nielk,
    I haven't read of all the posts on this thread but I have ME/CFS(organophosphate contact too)for many years and I'm in my late 60's now.When I got really bad the only thingI could do was walk...and at times even that was very difficult too!(at one time i played lots of tennis/hockey to a good level).....and since the early 70's i have been walking since(unable to run).I used to walk a lot...now it is getting more difficult.I have mitochondrial damage/disease(Dr Myhill's Test/Acumen Lab)....and I have PENE(not diagnosed by a Dr)in my opinion from what i have read/understand.Pacing is important...The fresh air and nature help to lift one's mind!
  2. Nielk

    Nielk

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    That's a very good point Ancientdaze; When doctors don't see you anymore, they assume you are healed?
    After my GP did all the damage to me when I first became ill by giving me loads of antidepressants and telling me to push myself, I kept getting worse and worse
    but, as a good patient I listened to my doctor because I didn't know any better. This went on for two years till I finally realized that there has to be another answer and went to a CFS specialist. But, the damage had been done. My CFS doctor said that had I come to him right away and started on his treatment I would have had a chance for it working but, I was too far gone. Whose fault is that? The few times that I go back to this GP, (only because he is around the corner from my house and if I need a simple prescription or a throat culture it's easier to go to him), he totally ignores the fact that I suffer from CFS. He knows that I go to a specialist and I tell him how severe it is but he doesn't aknowledge it at all. Even if I would explain to him the damage that he did yo me, he wouldn't believe me. He still thinks that my problem is depression.
  3. Nielk

    Nielk

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    Abha,

    I agree that being with nature is very healthy and when I feel a little stronger, I drive on scenic routes and it's good for my soul.
    Fresh air? where? I live in NYC. The second I walk out the door, my allergies kick in full force. The smog, noise, traffic bombard my senses. On a better day, I can walk for about 10 minutes. Every time I have tried to walk more, it has backfired on me. I guess we are all different and have different size envelopes.
    I'm glad that you can walk and enjoy nature. Ideally, that is very beneficial for the body and mind.
  4. Nielk

    Nielk

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    DB,

    I'm very proud of you that you have come to terms with this issue and are able to comfortably say "no" to people or if they are toxic to you, just cut them out.
    That is the prudent thing to do.
    I am learning but, very slowly. First of all, I am very sensitive and since i have been ill, my skin is even thinner. (I know, you will say more of a reason to cut these people out - and you are right)
    I have no problems cutting friends or neughbors out. Close family is another issue because it doesn't just involve me, it also involves my husband and I would be putting him in an uncomfortable position. It is his sister and they are just the two of them and very close. When I complain to my husband about things that she says that hurt me, he says that she doesn't mean it that way. He says that she really cares a lot about me and how I feel.
  5. Ocean

    Ocean Senior Member

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    Neilk,

    If your husband says that maybe it's true. It could be that she does care but that she doesn't get it. I've found that for some reason that I can't understand basically no one I know is capable of getting it. It seems it's not personal, just how people largely seem to react to this illness for some reason. I've tried to keep that in mind and tell myself most people mean well but since they don't understand I usually try to reply in a way that indicates that I am not looking for their input as I am doing my own research and seeing doctors about the issue. I guess in other words I just try to take the topic of them suggesting things to me off the table and let them know in a polite way that it is not up for discussion. If someone says something inaccurate I briefly correct them but do not engage in a discussion or debate on it. You can't help what others think but you can at least set boundaries on what you're willing to listen to and talk about. I remind myself that most people do mean well and do care and that helps take some of the discomfort out of those situations too for me. If someone seems like they really don't care or are being mean spirited then that's different. And I understand about the issue with her being your husband's sister. It is a more difficult predicament in that case. But maybe it would still help to make clear you aren't looking for outside input?
    Nielk likes this.
  6. Dreambirdie

    Dreambirdie work in progress

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    Nielk--The title of your thread is "How many times do I have to hear this?" Ultimately that is a question only you can answer. You're going to hear "THIS" as many times as you are willing to listen, as many times as you are unwilling to say NO. Those are two obvious choices, to tolerate and learn to live with toxic people, or to reject interactions with them.

    There is also a third option of trying to change toxic inconsiderate people and "convert" them into being understanding and empathetic, but in my experience that has never worked. What comes to mind is the joke about how many psychiatrists it takes to change a light bulb. Only one, but the lightbulb has to REALLY WANT to change.

    Good luck with it, whatever you do.
  7. Dreambirdie

    Dreambirdie work in progress

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    That's a good distinction, Ocean. Some people *might* mean well and are just uneducated about this disease. There is perhaps a chance that they might be willing to learn a few things, or to at least accept the boundaries you set for them. However, there are others who can be really nasty, and seem to thrive on negativity. People like that do not respect boundaries and will mow over them in whatever way they can. Those are the people that need to be shown the EXIT DOOR ASAP. Nothing good ever comes out of trying to compromise yourself in order to accommodate them. In fact, they won't even notice the effort you put in. They will slowly suck the life out of you if you give them the chance.
  8. Nielk

    Nielk

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    I just wrote a long post and when I clicked reply, I lost it - it said server busy, try again later.
    Anyway, what I wanted to say is that Ocean gave some good advice. My sister-in-law is a very well meaning person. Her weakness is that she is generally a know it all, so steering away from the topic of "CFS" is good advice. I will have to cheat though and tell her "I'm fine" when I'm not but, it's a worthwhile white lie just to keep peace in the family. I can always come here to the forum to get support when I'm feeling lousy. Thanks to all my friends here:)
    WillowJ likes this.
  9. Sean

    Sean Senior Member

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    Somebody said exactly that to me 25 years ago.

    He was a psychologist who had completely bailed on the profession because he thought it was just a superficial band-aid approach, that never acknowledged, let alone dealt properly with, the high therapeutic failure rate and the reasons for it.

    Sounds like nothing has changed.
  10. Ocean

    Ocean Senior Member

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    I agree Dreambirdie. We have to decide in each individual case if the person means well AND if they are willing to/capable of respecting our boundaries enough for them to remain in our lives. I believe that's true in any instance, not just in relation to this illness.
  11. allyann

    allyann Senior Member

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    Nielk,

    My thoughts are there are different levels of ME/CFS. I have a friend who has been diagnosed with CFS. She works part time and has three kids three years apart. She has never been bed or house bound. She gave me a book about a guy who got better with his own version of GET.

    I have put myself through two years of hell believing I was failing because I could not increase my exercise. I have gone from being able to walk for 20 minutes a day to be able to negotiate my stairs at home twice a day.

    my exercise physiologist who i was referred to for CBT/GET has told me that he can do nothing for me until I have seen a POTS specialist and have my POTS symptoms under control. I think that some of these GET specialists maybe starting to get scared of the consequences of pushing severe ME/CFS patients too far.

    I think once one goes from moderate to severe, GET is not a lot of help. Also most studies do not include severe patients as most struggle to do or get to the study in the first place.

    As for your dilemma, I have a similar one at the moment with my brother and his wife touting holistic approaches. If I tried every treatment that was suggested I would be broke, exhausted and completely destroyed emotionally. I get my hopes up and then it fails.

    My approach now is just to nod and let them now I will take it on board, but for the moment I am following up on x treatment and that maybe I will look at that next if x doesn't work.

    Take care, Allie





    Sent from my iPod touch using Tapatalk
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  12. Nielk

    Nielk

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    Thanks Ally, for your great practical advice.
  13. WillowJ

    WillowJ Senior Member

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    for people that do care, I tend to try to use an illustration. Suppose we were talking about people who coughed instead of were fatigued, and we didn't know how to classify coughing diseases. Maybe I have TB, and the others may have pneumonia, COPD, bronchitis, a cold, etc. All are real diseases, and some others besides TB are also serious or even long-term. But they aren't the same. Some are recoverable, some are effectively not. This works for explaining the muddy research, too.

    (If we're talking about psych therories, we can add panic attacks to the list of diseases so we can introduce psych treatments, knowing of course that like other psych-classified conditions, panic attacks can be from biomedical causes)
  14. Nielk

    Nielk

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    I understand what you are saying. We might all have different illnesses that have many common symptoms. But, if you go by the latest ME-ICC definition for the illness, eventhough there is no biomarker for a definite diagnosis, it does narrow it doen quiet a bit. If one fits into their requirements for diagnosis, you should be looking at people who pretty much have the same illness.
  15. Calathea

    Calathea Darkness therapy

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    I find that it's not worth getting into an argument over, and a brisk, "Thank you, I've already tried it and it didn't help me," seems to be the best way to shut up someone suggesting an unhelpful treatment. If they want to go into details, refuse to play, change the subject or say that you're too tired to talk about it. We may be used to everyone wanting to tell us what to do about our health, but we do actually have the right to decide when and with whom we discuss our personal medical details.
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  16. WillowJ

    WillowJ Senior Member

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    :Retro smile: I was presuming we knew nothing about your classmate's friend who "used to have CFS" other than that she supposedly had "CFS". We have no idea what "CFS" means without more info. Maybe she didn't fit ICC for ME or atypical ME?

    In my illustration, all CCC/ICC ME/CFS, ME, or atypical ME is represented by Tuberculosis. The other diseases are for everything else included with laxer defintions (or no definition, just assumed by patient or patient's friend, or when used as a wastebasket diagnosis), that goes by the names of CFS or ME (or things deliberately confused with them).

    In my opinion, though, in real life we don't really know whether more narrowly-defined ME is one disease, two, or a spectrum. I like to think of us as having closely related diseases (perhaps the same thing for which we might find an amazing cure), but there is so little research (particularly good research), that I believe we don't actually know.
  17. hurtingallthetimet

    hurtingallthetimet Senior Member

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    im so sorry that the people said those things..it is so very hard to exercise...if the people who said it knew how much pain and exhuastion you were in and how much courage and strength it takes to just get up and bath, brush teeth, clean house, get grocerys, etc. they would probably be very amazed at how great and brave you are...

    reminds me of one of first doctors i seen when ill..doctor told me he thought it was mostly in peoples heads and to jog 5 miles a day....and that i wouldnt get any worse but better over time until compelety well...thank God i finally found a good doctor knowledgeable in fibro/cfs

    i hope someone has some great advice or info for you to share with the people telling you this...i tried to find stuff for extended family and still they dont understand...lost friends over it etc. its amazing how these illness are treated becasue they are so invisible and little seems to be known abou thtem...but they are debilitationg and life changing...

    take care and i hope that they get educated themselves on these illness and apoligize to you
  18. Nielk

    Nielk

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    Thanks for all the empathy and advice.
    I have actually been thinkink, toying with the idea of telling people that I have an inflammation of the brain. It is part of ME and I really think I have this problem from different test results and symptoms. I think they would take that much more seriously. At least, they can't amswer "I have brain inflammation all the time too. Maybe, they will realize that this is a severe disease that you don't play around with. I don't think that if you tell someone you have an inflammation of the brain that they will tell you that what you need is to get out more and breathe fresh air or excercise. What do you think?
  19. Mandala

    Mandala

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  20. alex3619

    alex3619 Senior Member

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    Hi WillowJ, if you want more impact, might I suggest adding lung cancer to the analogy? It might give the analogy a bit more zing, make them realize that even a caugh can be catastrophic. Bye, Alex
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