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I can't picture spending the rest of my life like this

Discussion in 'Lifestyle Management' started by Aerose91, Nov 6, 2013.

  1. Aerose91

    Aerose91 Senior Member

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    August-

    Thanks for sending me that link. I actually worked with DR Lam for about a year and have his book also. He's actually the reason I took phosphaditylserine which had me the ME! Guess I'm a rare case tho because it doesn't happen for most people with just 1 pill like that.
    I haven't stopped at any point with adrenal fatigue recovery, especially seeing as though it's almost identical to ME recovery
     
  2. Aerose91

    Aerose91 Senior Member

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    This is crazy. What a story you have.

    It seems to be a trend with most of the people I have seen- that they go into a remission at some point lasting sometimes several years, and then slide back down into disease.

    Do you think that if someone is very careful when in remission than they can successfully hold off ME from coming back? It's so sad to hear you guys had a second grasp on life and then went back into this hell.

    For me? To be honest my brain is so bad I can't even feel anything is wrong. I literally have to wake up and convince myself every day that I'm sick and read my journals to remember what the problem is. My brother can home to visit yesterday- whom I'm very close to and see regularly- but just ann tea person in the house made me slip into near full psychosis because it was too much for my brain to handle; keep a grasp on reality and interact with this new person at the same time. All day every day my moods are all over the board and I try to keep some memory that reality does exist and this word I'm in isn't real. Reading my journals of where I came from is the only thing that keeps me going at this point because it reminds me that reality does exist even tho my brain can't feel it.
     
  3. ahmo

    ahmo Senior Member

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    Hi Aerose91. i can't comment on how to feel better about your life. I struggle with that myself, and I'm 64. So my issue becomes not, "I've missed out on a life", but, "Why bother, now that it's nearly over?" I talk to myself every day to overcome that voice. And, I've found that when I'm depleted of some micronutrient, the voice of despair and negativity is very loud. Or, conversely, at several distinct points, when I added a supplement, the voice, the river of negativity, dried up.

    I entered this conversation to add something different. I only this week encountered an article stating "What we call adrenal exhaustion is actually HPA malfunction: hypothalamus-pituitary-adrenal axis. (http://www.definitivemind.com/forums/showthread.php?t=560) I've looked at my ME/CFS through the lens of HPA for most of the 10 years I've been struggling. Almost 2 years ago I started hypothalamus glandular to help with my overactive autonomic system. It helped a lot. (Going gluten and dairy free, with the GAPS diet, further downgraded my high anxiety symptoms within 3 days.) I added adrenal glandular, because the other supps I was using for this, and low dose cortisol, were making things worse, with edema and pushing other mineral deficiencies. And finally, I added pituitary glandular when it became clear I could no longer tolerate the low dose Klonopin I'd been using. All 3 of these glandulars have been excellent for me. Finally my sleeping improved. Most recently, 6 months ago, I fully implemented Freddd's Protocol for B12 and methylfolate. I'm finally something approaching healed.There's much that I'm not able to do, but I feel better inside myself that I have most of my life. Some of this has to do with correcting the underlying mineral imbalance of pyroluria. My sleep is better than it's been all my life. Which, of course, means every day is better just because of not being sleep-deprived. Anyway, rambling here, you might want to try glandulars and certainly the B12 protocol. I now agree with Freddd's speculation that ME/CFS might be at it's core a B12 deficiency syndrome. Certainly there are other interacting factors, but correcting this has normalized my life. Best to you, ahmo
     
    helen1 likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Not me ... I was never a "glowing person" when I was healthy, so I don't expect my personality to abruptly change now that I'm ill. Maybe it is what society wants from disabled people, but in addition to being disabled, we're also sick. And for me, pretending to be cheerful just wouldn't be worth the effort, sick or not :p

    I still have the same (warped) sense of humor, and I make sure I don't get caught up in focusing on any negative aspects of my life. But I'm also careful not to deny those aspects of my life, so that I can acknowledge them and move on to something more interesting and productive.
     
    Sidereal, helen1 and ukxmrv like this.
  5. SOC

    SOC Senior Member

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    Couldn't agree with you more. I don't pretend to be well when I'm not. I don't try to hide my illness from the world. I am not ashamed of being ill. At the same time, I don't give up and hide in a corner. I am not in denial about the seriousness of my condition. I don't waste a lot of time moaning about what I can't do, but I don't pretend I can even begin to do everything I want to.

    I am never going to be "that ideal 'glowing disabled person'". For me, the idea is laughable. The only "glowing disabled people I can think of might be the paralympic athletes who train at my local university. However, they're injured but healthy and in good physical condition. Even so, life is often inconvenient enough for them that they're not always glowing emotionally. I think the glowing disabled person might be a myth alongside the myth of the happy slaves.
     
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  6. caledonia

    caledonia

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    One thing my shrink told me that was helpful, was when you hear all those scary statistics of only a few people recovering, is to think that you are going to be one of those who do recover. Why not you?

    What I try to do is manage the disease and not define myself by it. So I'm not really a sick person, I'm still a designer, musician or whatever, just at a different level than most people.

    All that being said, it does make me feel better when I have little improvements, and when I feel like I'm working towards recovery. Like Ahmo who posted above, I'm having improvements with methylation treatment. I can only tolerate tiny amounts, so I'm having tiny improvements, but they're things that have never improved before in 13 years of trying, like adrenals, thyroid, and sleep, so that's huge and very promising.

    Now I see everything through the lens of methylation, and it makes so much sense, like nothing else has before. If you haven't heard about this, check out the links in my signature, starting with the Methylation Made Easy videos.

    ps. based on methylation theory, thyroid and adrenal problems are HPA axis signalling problems, due to low glutathione in the hypothalmus and pituitary. You increase glutathione by doing methylation, the adrenals and thyroid get their signals and voila, they start working again.

    It seems to be working as predicted in my case. My adrenals were literally a flat line for many years. My naturopath said they were among the four worst they had ever seen. Based on the amount of supplementation I've been able to reduce for them, they're about 75% recovered. Same deal with my thyroid - about 50% recovered.
     
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  7. SickOfSickness

    SickOfSickness Senior Member

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    Some fall into poverty and can't get online much. Some prefer to use other health websites (sometimes not M.E. sites). Some need a break from reading or writing about their health. Some still browse but don't log in. Some are too ill to use a forum. Some have too many life problems happening, which takes all their energy. Some are busy enjoying life.
     
  8. SickOfSickness

    SickOfSickness Senior Member

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    It is depressing if you think that long term. Better to focus on seeing some improvement in the next few months. After that, a new goal for improvement.

    I've known people without M.E. who felt the same way. They just got caught in a depressing cycle of thinking why is their life that way, and thinking it would go on and not change. When most people can look at their situation and sympathize but they can see the person could change, or their life will change.
     
    Valentijn likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    I'd also say it's important to make accommodations in your life, instead of thinking "well maybe I should wait and see if it's really going to still be necessary." Things looked bleakest prior to getting my mobility scooter, but once I had that there was much more normalcy in my life, and I could get out and do stuff. More importantly, I could visualize myself having a life. If a scooter isn't feasible, even a pushable wheelchair and someone to push you around for "walks" can make a huge difference.

    It was actually a really fucked up psychologist who told me that doctors could not help me, and that nothing in my life would change from how it was at the time, unless I could convince myself to not be ill anymore. Naturally, that wasn't very helpful and actually made me feel very suicidal briefly. But it did piss me off enough to make some of the changes which she was so opposed to.

    So now I have a scooter, a tall chair I can sit on in the kitchen if I'm spending much time there, a shower chair, a pulse oximeter, and a TV upstairs I can watch while I wait to recover from a bath or shower. I've also been pretty persistant in looking for treatment of my symptoms, and have found some things to be very helpful. I couldn't think myself into being well, but I could find ways to make life a lot less unpleasant.
     
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  10. Aileen

    Aileen Senior Member

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    Above are parts of several posts you wrote. These jumped out at me because of the SPECT scan proof of extensive brain damage, the cognitive (brain) symptoms and the fact you were a competitive boxer.

    It is becoming more and more clear that some sports can cause brain damage. Lately we have heard a lot in the news about hockey and football (North American NOT soccer). In addition to concussions they are finding a connection to depression and other cognitive symptoms.

    Boxing was, I think, one of the first sports where brain damage was being reported. You might want to do some research on brain injury in boxing. That may be what you have. And the hopelessness you feel may also be a symptom. Perhaps you can find a doctor with experience in this field to help you and to find out if ME/CFS is actually the correct diagnosis.

    I second what everyone else has been saying. Don't give up and don't listen when people tell you recovery is unlikely or not possible. So many people with all sorts of illnesses have heard that line from doctors (and others) and then gone on to prove them wrong!
     
    SOC likes this.
  11. Aerose91

    Aerose91 Senior Member

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    I did box for a while but not to the point of risking any severe injuries and I haven't boxed for several years now. All of these things came on immediately several months ago and I have every symptom of ME so I wouldn't think they would he related. Had I been a professional and had these things slowly onset I would say that may be likely- but as bad as my SPECT is it's still inline with ME type damage
     
  12. xchocoholic

    xchocoholic Senior Member

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    I had similar brain problems when I first got me/cfs and after 16 years these went away via the elimination diet. My spect was normal but I had lesions on my brain.
    The lesions vanished along with most of my neuro problems.

    My biggest mistake was listening to my well meaning traditional doctors who told me that I would be that way for the rest of my life. I was 34 and my DD was only 2.

    I dawned you were diagnosed with adrenal fatigue, me too but didn't see any mention of dietary or toxin elimination.
    Gluten, dairy, corn, soy, chemicals including coffee and chocolate are common symptom triggers. This process hasn't cured me but it beats the hell I was in. The gluten summit in Nov May help you.

    I've been sick for 24 years this January and
    understand how difficult being chronically ill is but I chose to find something positive about my life when things look bleak.
    Getting out for any reason typically boosts my spirits. I had a therapist once tell me to praise my smallest accomplishments.
     
  13. Aerose91

    Aerose91 Senior Member

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    Im glad to hear you have regained a lot of your brain back anyway.

    Per diet and elimination and stuff- I've been on that protocol for at least a few years now. I did it before I ever even got sick because I was a personal trainer and fitness fanatic and just generally stayed healthy. I avoid all dairy, soy, gluten, corn, and all other histamine foods. Don't drink, smoke, etc. I add himilayan salt to my water and make my own bone broth to drink. I really can't clean up my lifestyle or diet any more than it is, yet my brain has taken such a severe hit it's ridiculous.

    Part of the problem I'm having is that basically all of the things you need to do to heal from ME I was doing for years before even getting it so there's no drastic changes to make.
     
  14. xchocoholic

    xchocoholic Senior Member

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    Bummer. At the risk of being a pest are you avoiding gf grains ? Paleo or Wahls diets are good options. I'm finding that juicing veggies and fruits work best for me.

    So how about glutamates ? Dogtorj has some great info on this. These don't effect my brain but he seems convinced some people have neuro reactions to these.

    How about brain foods ? Healthy fats, superfoods, etc ?

    Or treating for heavy metals ?
     
  15. Aerose91

    Aerose91 Senior Member

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    All of them :confused:

    And please your not being a pest at all I greatly appreciate the help and your suggestions are great- ones that most people would probably overlook. I've just been so healthy for so many years it really bothers me not only that I got ME but that it's so bad and progressing. I hope all this stuff levels it off at some point
     
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  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Aerose91

    What protocol are you using for heavy metals? It has been shown that some approaches actually move more metals to the brain, so "how you do it" really matters here.

    Best wishes,
    Sushi
     
  17. Aerose91

    Aerose91 Senior Member

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    Ive been doing nutritional balancing for about a year. Not sure if you guys are familiar with it but they do a hair sample test for minerals and heavy metals and then you use mineral supplements to move out the metals. It's a slow process but was working nicely until the ME hit. Now nothing seems to work but Im continuing with it
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    More details?

    Sushi
     
  19. Aerose91

    Aerose91 Senior Member

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    Here's the lab that does it. You can read all about what metals and minerals their checking for and how they interact under the "minerals" tab. It's kind of a natural way to replace heavy metals with the correct minerals that your body needs.

    http://www.arltma.com
     
  20. xchocoholic

    xchocoholic Senior Member

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    Sounds like you're on the right track. Your symptoms sounded like the opiod reaction that some autistic children have to gluten and dairy.

    I had a similar problem but it went away after a year or so on the elimination diet. I remember first noticing this improvement when at the mall. : ) I actually felt like I was a part of the human race again and not looking at everyone through a glass wall. Hope that makes sense.

    Have you been tested for nutritional deficiencies ? We have a local lab who will run these without a drs order.

    Or have you looked at what Dr Wahls or Dr Perlmutter have to say about your spect scan results ?

    One more idea .... I've heard that oxalates can cause a variety of symptoms for some.
    The yahoo trying low oxalate board is the most up to date info I know of but it's been a couple of years since I was on there. My oxalate reaction happens within 20 minutes and takes at least an hour to stop. It might be worth avoiding high ox foods for a few days. They recommend longer but your diet is so clean you might see a difference right away.

    oops. almost forgot. I saw that your taking prozac and was wondering if that could be causing symptoms. I'm just coming off or lowering most meds and supplements that effect my brain because it's just too sensitive to these.

    Hope you figure this out. tc ... x
     
    Last edited: Nov 9, 2013

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