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Hi All!
I have a problem which comes and goes and which lately has become overwhelming. I have been sick with CFIDS for eleven years and have tried to cope as best I can with the lmitations it has put on my life, including the end of a very successful career.
We are constantly advised here on the board and elsewhere to avoid stress, do SR, etc. But what I experience is an incredible amount of stress and anxiety in anticipation of being able to carry out even the simplest of activities, such as being able to stand up in the shower without collapsing. I can never be sure what I will be able to do on any given day, whether I'll be able to keep appointments, including doctors' appointments for which I am charged should I not be able to show up. Whether I'll be able to do the laundry and when and if I do, it takes me up to three days to recover.
The list of everyday things is endless and each activity a challenge which requires an exertion of mental strength and will power. I used to have this pretty well under control, but lately, I guess since I've been doing worse than usual, trying to carry on with daily life surrounded by an intense sense of stress about whether I'll be able to do anything or complete any task.
I suspect that I am not the only person on this bb who has to deal with life in these terms, so I am wondering how others in a similar situation to mine cope with all of the types or things I have mentioned. I am not whining here, just merely seeking advice or some suggestions on dealing with these problems.
Thanks for any advice you may be able to offer.
Naya
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
Stress may aggravate your condition due to a weakened and
chasllenged immune system, but some have recovered after thorough testing and the appropriate meds.
How much testing was done before you were given your diagnosis?
If you have had a long and complete work-up and the doc could
not find anything to treat, then one would wonder if you were
asked about taking a course of antibiotics to treat any hidden infection... There are bacteria which live within the
host cells and excape detection with conventional lab tests.
Have you had a blood test that included Sed Rate, C Reactive Protein, Antinuclear Antibody, White Blood Cell Count and
Rheumatoid Factor? If markers were abnormally high and the doc was reluctant to treat with antibiotics, were you referred to an Infectious Disease Doctor? Was Lyme Disease ever considered or tested for?
Have you ever had a test called the "PCR" to look for mycoplasma, ureaplasma and chlamydia, which are the
main causes of chronic undetected infection?
Did you ever take an antibiotic such as Zithromax after
a lab culture failed to detect anything? Did you feel better
when you did?
Has osteoporosis been ruled out, or (if found) treated with a serious bone strengthening med such as Pamindronate or nasal Calcitonin?
Has a complete thyroid panel been done including the TSH?
Ron
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya:
I understand completly.
Life sure throws us a curve and when it does I TRY to do what I can.
Life is more simple now and very peaceful. I avoid big deals, drama queens, highs and lows. I guess moderation is a great word to apply to life.
I find that even when I have a list I don't get it all done or simply forget.
I am at home so I have no stress at all and won't let it in my home, marriage and family. On purpose I have pruned out people I know but who are NOT true friends. I am not a busybody and won't gossip etc.
With on-going pain that in itself is exhausting and draining SO I balance that with good people, influences. I write letters, call friends and family and make a huge deal out of those people and let the rest go by.
I am older now and it is too tiring to get all wired up...besides who wants to be around a complainer etc???Ha
I choose to think happy thoughts and say nice things.
I keep our home clean and with lots of good food warming hearts............
Life is tooooooo short to be a grouch and it is too easy to be bitter...
In Reply to: Re: Advice sought - for severely chronically ill people posted by Ron [1540.1617] on December 01, 2004 at 22:41:18:
Hi Ron. I have been worked up and reworked up by no less than five doctors specializing in infectious disease and CFIDS and fibromyalgia. I have had I don't know how many different kinds of treatments, alternative and otherwise, some of which worked for a while, then stopped working, others which didn't work at at all or had terrible side effects.
I do have severe osteoporosis, but so far haven't been able to tolerate any of the treatments for that either. I also have severe MCS.
I have better periods of health and then worse times. Right now, as always in the cold weather, I am worse. I moved to SoCa. from the East Coast hoping the warmer weather would improve things, but it's still too cold for me even during these winters. Having no central heating or AC doesn't help either.
I believe I have had all the tests you mentioned, some at least half a dozen times with nothing turning up positive.
I do have low thyroid and am treating for that.
I know stress makes everything worse. That is why I posted for advice for coping. I appreciate your reply and all your suggestions. I am considering trying the new shots for osteoporosis, but am a bit afraid of possible side effects. Drug called Forteo. Need to further consult with my doc on this. My rheumatologist recommended it, but my complementary doc is doing some further research on it before he lets me try it.
Thanks for your concern, all political differences aside, I sincerely do appreciate it.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by lovebird [6.15] on December 01, 2004 at 22:49:29:
Hi Lovebird! Thanks for your words. I am not bitter or a grouch. I was just inquiring about the stress induced by not being able to get things done. I live alone and can barely keep up with taking care of myself, let alone anyone else. You are lucky to be able to keep your home clean and cook. I have to have someone come in and clean and can barely prepare my own food, so I guess you are doing better than I am.
I keep hoping things will improve, but lately, things have been on a downhill slide. I'm hoping that this, too, shall pass.
All the best,
Naya
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
I really don't have any advice for you, just wanted to encourage you. Your doing the best you can.....
I can't imagine not being able to do the simplest tasks in life. I would go nuts.
Don't think your whinning either! ;o)
You probably have lots of advice to offer others.
Barb
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Naya,
I've had chronic fatigue and fibromyalgia for many years.
When I read Dr. Stoll's recommendations for it, most of them made sense to me.
But then, when I found out that my symptoms were identical to Tick Borne Disease, I investigated further.
Doctors who treat Lyme Disease and other TBD's recommend that any person with chronic illness who is not responding to treatment should be properly tested for TBD's.
The symptoms you describe are identical to other people who post at LymeNet.org.
Carol B.
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
In addition to the tests that have been mentioned I was going to suggest reviewing the basics [3-l-stool] for a minute. I know you can't really exercise right now but what about the food you're eating. Is it whole and unprocessed? I know you can hardly cook but maybe there are some things you can do anyway, or with the help of a neighbor or friend. What about juicing, raw foods, or the blood diet? What about a little cleanse or fast?
As far as SR goes by now you know that's such an important part of the equation, are you doing it? The recommended amount? Are you sure you're in the alpha state when practicing it? SR would be easy because all you have to do is put on the tape, close your eyes, and learn to let go. I like deep breathing too, it effects your pace and rythmn, it's wonderful. How about alternate nostril breathing every hour. It balances the energy in your brain. And lastly, music is food for the soul, as you know.
Anyway, Naya, I'm sorry I don't have more to offer but I do hope and pray that you improve.
Stay warm,
gabs
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
No real major advice to offer, but I wondered if you use a shower chair. They make some pretty small benches with no back or arms that should fit in even the smallest shower stall or tub. Seems like it would be really helpful for washing feet and legs, washing/rinsing hair, shaving, and just for sinking down on when you feel fatigued, especially if you don't get much warning.
Wishing you the best,
Nutmeg
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya, your message breaks my heart. I've been in your shoes myself and
know what you describe only too well. There were times when it was a toss-
up, which was worse: the hellish way I felt, or the worry I had about the way I
felt. I couldn't plan anything, couldn't count on my body, couldn't do much of
anything except watch my life disintegrate. And that's a pretty rough thing to
witness as it unfolds. I felt like I let everyone down by flaking out so often,
and that nobody really got how disabled I'd become, or felt.
So, I eventually just gave up my expectations of a normal life. If I was too
weak to shower, then I didn't shower that day. If I couldn't go get groceries, I
asked a friend to get them for me. I guess what happened to me is, I
surrendered to what was. I know I'm making it sound easy, but the process
was not easy. It was just necessary, because my worry was damaging me
further. And it came about as a pretty natural evolution, once I saw where I
really was. Do you know what I mean by this?
There is so much loss & potential for real grief in what you're describing, and
I hope you have a place where you can talk freely about the feelings you may
be experiencing. I'm not saying your anxieties & stress aren't well-founded;
sadly, I know they are. There is a saying in zen buddhism, related to
meditating: start where you are. Well, this is where you are. You can't do
everything like you used to, and that is what's true for you. Now. Maybe not
forever.
What's the worst that will happen if you don't get all that stuff on your to-do
list accomplished? That's an important question to ask, and be realistic in
your answers. If you don't do your laundry, is there someone who can? If
you're afraid of collapsing in the shower, can you perhaps have someone get
you one of those chairs to sit in while you shower? You are in sheer coping
mode right now, so rally whatever supports you've got, Naya, & USE THEM. If
this isn't the time, when is?? If you're concerned about having to cancel an
appt at the last minute because of fatigue, be sure & tell them at the time you
make the appt that this could be the case. Maybe they will be willing to work
with you on this, and by all means, talk with your doctor about this, too. They
should be used to this, working with people who are ill everyday.
I live alone, too, and have two dogs to care for. My significant other lives
nearby, & he was very supportive and helpful during this time when I was at
my worst (well, he still is). Still, he works 14-hr days & then some, and it was
important to me not to depend on him too much. So, he helped me with what
I thought were the biggest essentials, and then I let him know as we went
along what I could do & couldn't do, on a near-daily basis, sometimes even
more frequently than that. I hired people to take care of my yard, walk my
dogs, stuff like that, and this after I'd lost my career & had a very reduced
income to survive on. At one point, I thought I would have to sell my house,
but somehow it never came to that. I did learn to ask for help, though,
something I've never liked doing. It didn't come easy, but at a certain point, I
had no real choice.
I guess my points are, lower your expectations, don't try to be normal right
now, and tell people you need help, if you can, and if you do. If your support
system isn't available to help at the daily detail level, maybe we can come up
with ideas for you to tend to those necessities. There may be agencies in your
community that can provide you with services you need right now. I know it
sounds exhausting, just the mere thought of it, but maybe someone in your
life could make those arrangements for you. Or, I would be very happy to
make calls for you, any time.
One last thought: is there any way you could have someone come live with
you, to help you with the day-to-day stuff? Might also help fend off any
loneliness this illness may cause, because of the isolation.
mary
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 23:00:52:
Hi Naya,
Forteo is quite interesting...
http://www.centerwatch.com/patient/drugs/dru812.html
I suspect that you may tolerate it quite well, but wonder if
stimulating new bone growth is going to be sufficient.
You said that you have low thyroid and are treating for that..
If you did not have osteoporosis BEFORE you started taking thyroid meds, then I wonder if you are taking too much and causing the problem. More tests and dose adjustment?
False Claims for Synthroid
http://www.drmirkin.com/morehealth/9260.html
You might need to prove that this is not the case. Building new bone may help, but stopping the rapid loss of the old bone could be more helpful. Pamindronate might be an option
instead of, or in addition to Forteo.
Have you looked up Pamindronate? It seems to have a better
track record compared to the newer forteo. It is used in treating Osteogenesis Imperfecta in babies with severe bone
loss.
Bone loss due to osteoporosis can be the source of the pain
you are feeling, so treating that can make you smile.
Check all these links and print them.
http://www.drmirkin.com/joints/9919.html
http://www.drmirkin.com/joints/7923.htm
http://www.drmirkin.com/archive/7228.html
Ron
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
I just don't worry about it and only do things that I feel like, or really have to, as tough as that can be. I let my car inspection expire and was 2 yrs past the date, and started to get tickets. I tried hiding the car up side streets where I didn't think the ticket writers went, but they found me. Then I started to go to the park from 9-4:30 to hide the car. I don't like anyone working on my car since they never do the job the way I would, and I used to make sure the car would pass before I would take it for inspection, and then I missed the rear brakes I thought would pass, and let them replace them and they failed 2 blocks from the shop, and other things have been done wrong or not at all and failed after I got illegal stickers and couldn't complain, and wasn't up to it.
I finally got a legal inspection but just the stickers applied. The fake ones I had been geting were being ticketed because they would fade. I had 500$ woth of tickets one time, and went to court and they reduced to 100. I appealed and they dismissed it. Had another 500$ worth that they only cut to 300. I appealed, and am waiting for the determination. I have another appeal if I don't win, and anyway I would have probably pains the money for repairs if I had the car inspected, which is why I didn't.
Things are a mess here. Me, the house, and car, and I want to do most things myself, and only when things Don't work, do I get after them, suffering a lot of pain and stress. I just ignore things unless I can't. Not the way I like to live, but That's the way things are. I stoped making Dr or dental apointments, since it was Such an effort to get there, and I was Always late and got greif. There are Lots of things that I want to do, and usually don't get them done, and they are costing me money, but I just can't do them.
In Reply to: Re: Advice sought - for severely chronically ill people posted by Ron [1540.1617] on December 02, 2004 at 00:49:01:
Thanks again, Ron! Lots of info. Will check it out. I'm not taking Synthroid. Wouldn't touch the stuff, nor would my doc prescribe it. I'm taking glandulars for thyroid, but have to ask about taking Armour instead. I have very bad reactions to a lot of things which is typical for some in my situation. Have to ask about the Pamindromate, too. I noticed you mentioned it to someone else, too. never had heard of it before. Will google it.
The pain isn't the worst problem most of the time- only after lots of exertion. The worst problems are the fatigue and a kind of lethargy, both physical and mental.
Lots of stuff to look at here. Will bookmark your post.
Thanks again!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 23:00:52:
I find that the weather has to be perfect for me for me to feel good. Heat or AC aren't the same, since we can't be in them all the time or do everything that we have to in them. It seems that cold and heat are stressors, that I can't deal with easily. Probably because everything is weakened.
In Reply to: Re: Advice sought - for severely chronically ill people posted by Carol B. [209.10] on December 02, 2004 at 00:10:51:
Hi Carol! I've been checked for Lyme's so many times. Is there a new test for it other than Western blot?
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by maryb [516.1444] on December 02, 2004 at 00:47:22:
Hi Mary! What a thoughtful post! Thank you! Believe it or not, I have been through every step of what you described. I have asked others for help, explained my situation to all those necessary, done the Buddhist thing, the three-legged stool, have a sort of SO who helps me out when he can and understands, well almost, my situation. I also have two cats to take care of.
I let a lot slip by, am not the perfectionist I used to be, and expect much less from my life than I used to. I guess I'm just going through a rough time right now and have kind of lost some of the mental focus and attitude that you describe. I had developed that after the first few years. It's just that every once in a while, it hits me how useless my existence is and how difficult the simplest things are for me - thing that "normal" people just take for granted. I had a very busy and fulfilling career in which I felt I contributed to society. Now I feel like a veggie!
Anyway, I guess I just have to try to get my head back on track. I've been working on it, but I guess I just decided to post here because I thought there would be others who would understand and with whom I could share.
Thanks for all your thoughts and offers of help. I think I just need to get my head back on straight the way it was when I was more accepting of my situation. I guess I also thought that after eleven years, I wouldn't still be in this situation, but I am. Right? Right!
BTW, you sound better. I may have forgotten, but was there something you did or took that made a signifciant improvement for you? If I asked you before, I apologize, but you know how the brain thing goes.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:17:11:
Naya,
Yes, actually.
The Western Blot should be done by Igenex Lab in CA or Medical Diagnosic Lab in NJ.
These two labs run a more sensitive test than the others. They test for 16 bands; others test for only 5.
Carol B.
In Reply to: Re: Advice sought - for severely chronically ill people posted by Vince F [173.9] on December 02, 2004 at 00:55:01:
Well, Vince, I can relate, but I try not to get into trouble with the "law" lol. You seem a lot more laid back about stuff than I am. Just compulsive, I guess, and unable to follow through. I haven't been to the doc or the dentist in a long time either because I keep cancelling appointments.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Carol B. [209.10] on December 02, 2004 at 01:42:19:
Thanks, Carol. I'll have to check my records. I had tests done back in PA which could have gone to NJ and had another one done here in CA. Will check with my doc here.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Barb [2737.1351] on December 01, 2004 at 23:41:26:
Thanks, Barb!
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:46:16:
Naya,
If you want more information about this, you can go to LymeNet.org.
And read this:
http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/9c1ac876bb7897f5852568ec0056eb02?OpenDocument
Carol B.
In Reply to: Re: Advice sought - for severely chronically ill people posted by gabirella [180.890] on December 02, 2004 at 00:40:24:
Hi Gabs! Yeah, I know, I know. I'm always on a nearly PWFD. The exercise is tough, though doing daily stuff for me is exercise. I also do get some other forms of exercise, lol! That all wipes me out.
What I have been neglecting is the SR. I confess to that. I still can't find a position to do it in which doesn't leave me completely spaced out for hours afterward. I know this is going to sound weird, but it's as if all the toxins in my gut float up to my head when I do SR and I feel just awful afterward. Have to experiment some more.
Thanks for your post!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Carol B. [209.10] on December 02, 2004 at 01:51:01:
OK, thanks!
In Reply to: Re: Advice sought - for severely chronically ill people posted by Nutmeg [86.74] on December 02, 2004 at 00:44:17:
Hi Nutmeg. I thought of that. I can stand up in the shower without too much trouble. It's just the thought of having to do it that makes me crazy. Weird, huh?
Thanks!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Vince F [173.9] on December 02, 2004 at 01:16:45:
Yeah, Vince! That's exactly it!!! I have the same problem. If the weather is perfect for me, I do a whole lot better. It has to be the right temperature, the right humidity, the air quality good and then things are quite bearable, if not normal.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:52:19:
Hi Naya,
That's good. I personally think it's best to start with the 3-l-stool, see if anything needs to be adjusted, and go from there. So you pinpointed a problem with something extremely important, 'SR'. And I think this is possibly the most important leg of the stool, so maybe by just working through this obsticle you might see some significant improvement.
I consider this good news actually because there is something important that you're not doing, something you can try, a direction to start in, there is some hope. Would you feel comfortable asking Walt about your reaction to SR and seeing what his suggestions are? That's what I'd do, especially since this is such a big part of his program.
You might be right about the toxicity causing such spaceness but maybe there is a way to rectify it. I remember G. saying he used a tape or a technique after SR to pick himself up. Dr. Jeffrey Thompson has a set of tapes called the "brainwave suite" and they have one that can pull you out of that state.
Have you tried any deep breathing? As I mentioned to Philly it's nice because you have a lot more control as to how deep you go and how fast you do it, and it's effortless.
Maybe drinking lots of water and liquid after SR might clear away the toxins quicker too.
You might also check the archives and see if there's any information on this.
Take Care,
gabs
In Reply to: Re: Advice sought - for severely chronically ill people posted by gabriella [180.890] on December 02, 2004 at 02:22:51:
Hi again! I posted once about the problems with SR and nobody had any ideas. I have a ton of Thompson cds. That's what I always used to listen to. Do you know which one will take you out of the stupor?
I used to do a lot of deep breathing, too. Still do it some, especially before sleeping to calm me down.
Thanks so much for responding!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 02:35:23:
I was 3/4 of the way through this post when my system crashed and I had to log all the way on again. I have an old computer and it takes a while.
So I'll be quick. The state is Beta:
"Beta
The Beta brainwave state is associated with a heightened state of alertness and focused concentration. When your mind is actively engaged in mental activities, the dominant brainwave state will be Beta. A person in active conversation, playing sports or making a presentation would be in a Beta state. The Beta brainwave state corresponds to frequencies ranging from 13Hz to 40Hz."
Keep doing the lower stomach breathing, it's really good to do in general. Try it all day if you can, after a while it becomes a natural rythmn. Sometimes things take a while to work. If you do this breathing very carefully with your eyes closed sitting up, eventually it will put you in the alpha state.
Look into alternate nostril breathing, you might try that after the SR to pull you out because it's relaxing but energizing all at the same time. I did it before a stressful lecture one night and it worked very well.
Have you considered EFT or Rolphing?
And please, ask Walt, he won't mind and he will probably have some good suggestions.
You're welcome Naya, don't give up, fight to live, you can do it,
gabs
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Dear Naya,
realising that you live on your own makes sense of your complaints and reinforces my idea that 'symptoms' cannot be treated separately from the context.
I, for one, find it extremely stressful to live on my own. My mother did that for 20 years, and somehow survived, but she complained continually of various ailments. She went to regular check-ups, which never detected anything serious, and today she is 75, and has no chronic disease. Last year I helped her move into an aged care home. We asked for a single room, but she met a great room mate and was happy sharing. She is now a different person - happier, and rarely complaining. She lives on an island now, and walks every day to the shore, where she just sits and watches the sea. She told me recently that there are many days where she doesn't feel like a walk (bad knees, shortness of breath etc.) but she just does it anyway. And each time, she claims, she feels better afterwards. She always taught me to persist in face of difficulties and not give in when I feel like it.
I admit that I did not understand her complaints nor her situation until recently. This summer, I spent almost four months in London, writing in almost complete isolation. After a short while, I found it difficult to get motivated, difficult to get tired, difficult to fall asleep, and shopping and chores were just exhausting. I found myself turning into mum! Well, I did start jogging, and that's about the only thing that helped. Suddenly I found myself thinking about mum and her life on her own....and it dawned upon me that she complained about exact same things I was starting to feel. So I can relate to that kind of experience now.
...Now, not everyone is the same. My mother-in-law has also lived on her own for the past..32 years, but she is coping much better than my mum. Socially, she is a totally different type of person, who sometimes prefers solitude to socialising. Me, I'm the opposite. I know for sure that if I were to live on my own I would not enjoy it. Actually I would try to avoid it if possible. But enough about me...
I am so sorry that your condition has worsened to the point where you can barely cope. I'm truly sorry that I don't know what to suggest, but agree with some of the others' suggestions here. You do need practical help, perhaps on a permanent basis. I'm not familiar with your social system, but I hope you can get some help. Perhaps it would be good to let those near to you how feel, or stay with someone for a while, if that is possible, of course. Perhaps, more importantly, you should try to figure out an activity that you can do with others, where you don't feel you need to strain yourself, something you enjoy doing, and look forward to. A little light point in the tunnel. Unfortunately I can't say what, because we are all different, but I think it's important that we have such a light point. And please don't let the situation get you completely down. You can find your own special way of coping, I am sure of that, you have the mental resources to do so.
All the best,
Sonja
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya! Eleven years of CFIDS symptoms is unacceptable with all the knowledge that's out there today. Why don't you send me an email and let me "SEE" if I can give you some suggestions to get you on the right path towards healing. Contact me at alternative.health@verizon.net * S.H.A.P.E. *
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
goodmorning Naya,
I feel so completely helpless as there is so much I would love to do for you to heal you and make your life better. If I lived close by, believe me, I would be in a better position to be of some concrete help.
I want to say how deeply touched I am after reading the posts by Sonja, MaryB, Gabriella, Ron and all the others
on the board who are so compassionate to your problems.
I'm not a medical person so I don't know what to advise you, but as I promised in my past e-mails to you, I will continue to research for you.
All I can say is to try to keep up that great fighting spirit and don't lose hope for a better life.
You will once again contribute to society !
The answer couldn't be too far away.
Sending you hope and strength across the miles.
Nadia
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi, Naya.
This is TYPICAL of people who live their lives right at the edge of their cliff! See the "Modern Medical Interpetation of Stress" article on the home page. You might also consider reading my book that has an in-depth explanation of this.
One of the things you can do is get serious about SR and begin gradually pulling yourself back from the edge of the cliff.
Let us know what you learn.
Walt
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
It sounds like everyone gave you good suggestions. Your description in your post and other posts reminds me of how I spent about 20 years or so. I still have somebody clean my house and I still haven't been able to consistently exercise except for rebounding, stretching, and walking, all of which do help. I'm good at SR and the diet, though. And as I keep working on this and listening more and more to the subtleties of my bodymind, as it sounds like you are doing, I continue to improve my entire health condition and my entire life. This is what I wish for you.
So what I'm hearing in your posts (please correct me if I'm wrong) is that there is some kind of thought pattern, psychological block, or emotional unfinished business that appears whenever you face something that "has to be done." It is the thought of doing the thing that causes your energy to be depleted than actually doing the thing itself. Is this correct?
Best wishes,
Jan
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
I can sure relate--After being considered a health nut since I was 14 yrs. old ( now well over 60) I ended up in the hospital a few months back. MANY MANY TESTS--What a shock, as you,I was very active most of my life, travelling, even a student pilot, had a house built in mtns. of Pa long before it was fashionable for singel women to do so -"yada,yada, yada"-Now I learn that I HAD Lyme disease but more than that I have "pulmonay hypertension" prob. genetic and exacerbated (spelling?) from smoking. THANKS TO DR. STOLL AND THIS BOARD I have a rebounder, (that's what I'm supposed to be doing as we "speak"-I've always tried to meditate but more impt.-I now have a stationay bicycle. Discovered when I drink one of those energy drinks in the AM and do about 15-20 min. on bicycle I can actually go shopping w/o gasping for air. You live in Ca. and prob. near the ocean. My favorite thing is to have breakfast ( bring a book ) at a cafe/diner-LOTS OF DINERS IN JSY.--and go to the ocean and just chill out. If I can walk a little I do so, if not I just "meditate" and get those negative ions for those crashing waves. I REFUSE TO ALLOW THIS TO CONTROL ME.--If I'm tired, I take a nap. AS Happgal said, it is a mind-set and sometimes a simple affirmation each morning helps create more positive thinking. A difficult thing to do but it must be done. OK--I'm going to "surf" a little more on this board and then on to the robounder and bicycle. Also have to take the rest of the groceries out of the car trunk. Didn't have the energy to bring them all in yesterday. I have the perishables packed sep. so those can be brought in (I live on the second floor--annoying, but I tell myself it's good exercise. Contact S.H.A.P.E-- You're a tough lady sooooo
GO GET EM! You're the master.
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
since you're not sure what you'll be able to do on a particular day it sounds like you have days that are worse than others. I'd suggest you keep a diary of food, chemical exposures (like if you pass through tar vapors on the way to a doctor's appointment), and stresses (like phone calls from relatives that stress you or your own phone calls trying to deal with businesses and institutions (which can often be stressful when you find yourself dealing with idiots). Also record which days are particularly bad for you and in what way and try to find a pattern of stimuli that proceeded days you couldn't do what you needed to. Perhaps you could modify diet or avoid stressful people the day before an appointment you need to keep.
We all react differently to stressers, too- part of it is perceptual, so, perhaps some hyponosis or therapy to help you react differently to stress could help.
During my sick years, I had a problem with my knee and my ankle and they would often stop supporting me-I'd be going down the steps of the campus bus, the knee would give out, I'd go sprawling onto the pavement. I'd be walking along a city street, my ankle would turn and I'd fall and experience the most intense pain. I'd just sit there in the middle of a busy sidewalk waiting for the pain to subside so that I could get up. It gave out once while I was carrying a puppy and I fell holding him and, as I sat there, I wondered how I could ever safely hold a baby-it didn't seem possible that I could.
At age 30, I had so much wrong with me and I started getting such intense pain in my head that I couldn't study-that bothered me most. Out of desparation, I tried macrobiotics. I thought maybe I'd get a little relief from the pain in my head- I didn't really think of fixing the rest of me- I had accepted that that was just the way I was. But EVERYTHING started getting better, and I got really healthy. After a few years of not falling, I decided it was safe to marry and have kids.
In those years, the smallest thing on the sidewalk would cause my ankle to turn. Now, I walk around rural pastures and dirt roads, step on big rocks and in holes and nothing turns my ankle. But, somewhere deep in my head, is the fear of it and the memory of that pain. Everytime I encounter a situation that would've sent me flying back then, there is a flash of remembered pain and fear in my mind, but, blessedly, it is fleeting. I don't dwell on it and don't let it occupy my thinking during most of my time.
I think one thing to remember is, even though you have a specific diagnosis, there can be other things impacting on how that disease or disorder affects you. You may have a food intolerance that, when addressed, will make some part of your daily routine better (I grew up loving milk and drinking lots of it- I would've thought that I would at LEAST have strong bones, but it wasn't until I gave up milk that my ankle turned strong, my knee healed, and my arthritis went away). If you've had falls, you may need some chripractic adjustment. Even if whatever you do for yourself doesn't address your core illness, it can still improve your quality of life, because some smaller stuff may have cropped up during these 11 years, that you might either not notice because of being overwhelmed by the main problem, or that you might assume are natural parts of the main thing.
I'd suggest you do something radical- after seeing what macrobiotics did to me, I believe that the body is capable of incredible healing.
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
<< But what I experience is an incredible amount of stress and anxiety in anticipation of being able to carry out even the simplest of activities >>
When I read that, I thought of myself. Whenever I "anticipate" all I have to do and how tired I am, it's always worse. I know it's easier said than done, but try to stop anticipating everything. If you haven't already read it, I highly recommend "The Power of Now" by Eckhart Tolle. I read it a few months back and it made so much sense as to why some days I feel more depressed or anxious than others. Right NOW, you're handling whatever is in your way to do. But, if you start thinking about all the things you have to do, you start feeling overwhelmed, and that saps even more of your almost non-existent energy....that's what happens for me, anyway. It's much better to keep your mind in the present moment and stop expending your energy on things you aren't even doing yet! Sure you have to do them, but stop thinking about them til it's time to actually do them. Dreading things always makes it worse.
I've been fatigued for about 10 years now, only getting bad in the last 2. I just thought I was a "low-energy" type person. I'm "only" 42 and have no desire to go anywhere I don't HAVE to go; don't want to play golf or do any fun things even (so forget about things I HAVE to do...somehow they get done, but I've learned to adjust my expectations around the house, etc.). Oh....and I don't work outside the home anymore either.
I've learned through organic acids testing that I'm very low on B-vitamins (affecting my energy production--Krebs--cycle) and B12 especially. The B12 thing should've been picked up 6 years ago by an MD but wasn't (because blood levels of B12 are very unreliable). Anyway, I'm now supplementing and FINALLY feeling better.
If you can't get futher testing, I'd recommend trying some METHYLCOBALAMIN B12 (not cyano-B12)and/or hydroxo-B12 or adenosyl-B12 (hydroxo- gets converted into both methyl- and adenosyl-, methyl- works on the brain and nerve regeneration, and adenosyl- works at the cellular level for more energy). Do an internet search on methylcobalamin and its benefits. A good B-complex would be wise too, if you're not already taking it.
Another thing I've been trying is positive thinking (I discovered my "internal dialogue" was horrible!). One little thing I do is to say over and over as I fall asleep "Everyday in every way, I AM better and better". As I awake each morning, I say it then too. And, I'm better at keeping out the non-productive thoughts too. Hopefully this is instructing my subconscious on how I want my days to be. This, and my new B12, are giving me my first hope in the last 2 years!
You can do it! Believe........
Tab
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
All these posts are wonderful. I agree very much with
Walt and Happygal. Walt's post is so right on. It is
general in scope, but I do believe it is the truth.
I too live alone, and face much of what you speak of. I
too, although i don't have cfids, become incapable at
times of just doing the simplest things, because I am
simply worn out. Doing it all for yourself, alone, is more
than tough. I used to push myself through the tough
times, and MAKE myself do everything, at any cost. Not
any more. If I can't, I can't. In this surrender, I gain back
my strength. I used to feel the anxiety that you speak of,
but not any longer. And this is what I really want to write
to you about.
I think that Happygal has a point about unfinished
business. I told you about my friend that has cfids.
Same for him. His unfinished business caused him to
finally collapse. His diet was never terrible, nor his
general health routine. What was killing him was his
drive to produce, to be vital, to do it right, to make a
contribution, to overdo ....he saw life as "out there"
rather than "in here." He was running from something
inside himself, all wrapped up in anxiety. The only way
he could turn cfids around, was to STOP, and go inside
and take a look. This took many years, as I told you
previously.
The anxiety that you try to avoid, is an energy knocking
on your door. It is saying..."I am trying to tell you
something, and your not listening." I dealt with this type
of anxiety my whole life, worked on it in counseling,
until five years ago, when I finally just let it be. Some
voice inside myself said, "you have to just be with this
feeling. Your life is on the other side of this energy." I
stopped trying to "stop" it, and I just sat with it. Literally,
just SAT, and felt it. Hours per day. I cried and cried. I
didn't even know what I was crying about. I didn't
anaylize it in my head, read any more books about it, or
get counseling for it any longer. I simply felt it. I thought
it would kill me, it was so painful. But, I knew that I had
no more choices, as drugs were not an option for me.
I had to reside there for a long time before I could
surrender to the emotions.
Emotions are behind that anxiety, and they need to be
felt, and released. I thought I had done that over all the
years of working "it out.'" Counseling just didn't do it for
me. It helped me to understand in my mind what led to
what, but it didn't fix the ingrained neurological
responses. Our brain is a crazy thing, clinging to
pattern, even when you fight to understand what has
happened to yourself during your lifetime.
IMO, trying to make anxiety go away, is not the answer
for true and progressive change. SR is great for
releasing new and old stress, but when anxiety keeps
knocking on the door, there is something more to deal
with. For me, embracing the anxiety, feeling the truth
behind the anxiety (the emotions), actually allowed the
anxiety to flow away, brought clear to my mind what I
was needing to truly face. Surrendering to the anxiety
is the most difficult part of change. After the anxiety
melts, you can remember how you felt as a child, with
everything being possible again. This is a long
process.
After surrendering to the anxiety, I began to regain my
strength. In turn, I gave myself permission to contribute
to myself for a change, instead of to society. I realized
that I did not care enough about me, and that I was
always feeling a need to contribute outside of me.
I know you are your own person, and I know you are not
me. But, for your health, because I hear your
desparation and lonliness, I hope you will find
something in my experience to use for yourself, in your
own way. I won't say the process was easy, and it
certainly wasn't a short cut, but it opened up a new door
for me.....finally. The process continues to be a tough
one, but there is hope and future now, rather than
seeing myself continue to live without energy and with a
lot of anxiety about that which I cannot control, and
about that which I perceived as loss. Surrender is
always an option. Fighting it isn't always the answer.
Surrender to the anxiety most often leads to dissipation.
I hope I am saying this in a way that makes some
sense.
I wish you the very best. I really do. Most times, when
we are at our wits end, it is a signal for a desparately
needed change within ourselves, within our spirit.
From your words, it sounds to me as if you are right
there.
Keep writing in Naya. We are here to help, and I know
you already know this.
xo
dd
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:40:04:
Hi Naya, yeah, the despair is a huge part of this type of illness, and it seems
like a pretty healthy response, really, though a sad one. And, it can
overwhelm you. Have you tried therapy, Naya? I know it might be very
exhausting, plus it would mean another appt to try to keep, but it might help
you with feelings of depression & discouragement, you know?
One thing that has helped me immeasurably with the fatigue has been co-
enzyme B complex capsules, by Country Life. I meant to mention this in my
previous post. I also take a co-enzyme B6 capsule, as well, by Country Life,
and the two of them seem to be highly effective.
For me, the key to getting healthier was to put my focus almost exclusively
on healing my gut. While LGS was rampant, I couldn't do anything, slept my
life away, was weak as a kitten, etc. Getting my gut into better shape was a
critical part of my healing, and I can't emphasize this enough. When you have
so many awful symptoms to deal with, it's hard to know where to start, and
you can get overwhelmed so easily. My best advice is to stay tuned in to your
gut at all times, right down to every single thing you put in your mouth. Ask
yourself if this is going to aid in its healing, and if not, do not swallow! It
came down to that, for me, and it paid off. Consistency is the secret. I think I
was doing many of the right things, but not in sufficient quantity, nor with
any consistency. Once I figured that out, things started improving pretty
rapidly.
I'm so glad you posted, because you will probably get pieces of help that will
really make a difference for you.
take care,
mary
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi again" OK OK--Just did my 15 min. on the rebounder. Now to do the stretches ( if I can) learned 5 positions from this board. (Tibetan Rites )- onto the bicycle for a little bit and then try to dust the furniture. My routine for my problems: chiropractor 1x a mo. or every other mo.
stretches, bicycle,
went to health food store to get: hydroxyapatite.boron for osteo. (THANKYOU DR. STOLL, AGAIN)
vit. c; efa; most def., cayenne and clear lungs
Chin. medicine) NAC-- and as Gabs said--"LAUGH, LAUGH, LAUGH" You and I have some political diff but the impt. thing is to pray that whatever is done is the right thing and keep ourselves as strong as we can. I bore myself often but as it is said. " If you want to change the world, change yourself, first." I'm trying and there are times I want nothing more than to be a couch potato. If that's how I feel, I gave myself permission to do that. There's a lot of love on this board--so, Love Ya!
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:57:44:
I think it is that everything affects us, if not perfect, or compatable with us. Being weakened, we are more sensitive. Everything affects us, and causes stress, than pulls us down further, even just doing simple things wears us out. You mentioned showers. I used to have to sleep after taking one, because they wore me out. Now I take them when needed, but do spots in between. My face an shoulders are oily, so they get done before going out, and any Pits. I don't need to be squeeky clean like before. The world won't stop turning.
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
I wish I could help you. I hate to hear you are going through such a difficult time. For me, I have found that with CFIDS, there are a lot of things that we would like to do... that "list" of things. But in reality there is not much that really needs to be done. I try to simplify my life as best as possible. That mind set and letting go can make a big difference.
Also, for you Naya, I think the advice below about SR is imperative for you. And this is just a suggestion, but physical activity is so important. I know you are utterly exhausted, but is there a way you could pay someone to come to your apartment to get you started on a light yoga program? I have found that the time spent with exercise is far more important than going to doctors. I started lifting light weights at the gym about 3 months ago, and it has really made a difference with my energy level. This type of exercise helps all the hormones function better, resulting in more energy eventually. Every time I went in for an exercise session, I felt I wouldn't make it through, but afterwards I really did feel better. You may initially say that is simply wouldn't work for you because you are too exhausted, but still you might want to give it a try. Paying a coach or a trainer instead of these doctors visits may make a big difference, as a trainer can help encourage you when you are exhausted. These are only suggestions as I really don't know the answer for you Naya. But please know that I am rooting for you and sending positive thoughts and prayers your way.
Sapphire
In Reply to: Forgot to mention posted by YinYang [1789.1143] on December 02, 2004 at 10:20:01:
Thanks YinYang, I think laughter is very much needed in her life...and she does have a good sense of humor, so she can partake.
I really loved what you said, "If you want to change the world, change yourself, first.", it's so true!!!
In Reply to: Re: Advice sought - for severely chronically ill people posted by lovebird [6.15] on December 01, 2004 at 22:49:29:
I wasn't implying you were grouchy...just that millions of people are when they could be more pleasant.
I have someone cooking/cleaning for me too. I understand.
I don't get around well either. It's ok.
You are right...it gets to be tooooooo much.
Keep in touch here. You can always write to me. I don't know much but I have had some experience.
We are all in the same boat and being alone magnifies things..so try to think happy thoughts.
I say "every day in every way I am getting better and better."
Love,
Lovebird
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:55:03:
Hi again, Naya,
Sounds to me like you are overwhelmed by the anticipation of what's in the future...the anticipation of everything you feel you have to do. Remember to take one day, one task, one minute at a time and try to feel and enjoy the present. Do just what you can and work at reducing your anxiety about everything else...I'm working on this one too :)
First of all, try relaxing your standards more, and try to resist beating yourself up when you don't do what you think you *should* do, for whatever reason. If you don't take a shower one day, don't do your laundry, or whatever, who cares (buy another pair or two of socks and undies for emergencies, or do a little hand wash)...no one else will know except you, and then you can work on changing your thinking that it really matters. Whose voice is that that says you should or shouldn't do something, anyway? Probaby not yours. To do lists are only meant to be reminders or a wish list, not a law.
Next, try to come up with rewards for doing what you absolutely have to do, like taking a shower or shopping and preparing healthy food. Find a way to make it fun and not drudgery. Decide if it *would* be better, safer, more fun to have a shower bench, and if so, get one and make your shower a relaxing time that you can look forward to and that will not exhaust you. Treat yourself to a new bath puff or back/foot brush to make the job easier. Sing in the shower and try to enjoy yourself. Do SR or something else restful to reward yourself after you are finished.
After shopping expeditions, take a detour to a park on the way home and just get out of the car for a few minutes to sit on a bench and read or think, walk a little, breathe in some (hopefully) fresh air, and watch the scenery or kids playing, etc.
Put on some relaxing or favorite invigorating music while you put the groceries away and cook or chop or exercise/stretch, so it's more interesting. I usually do one of my SR sessions after I get home from shopping or errands, since I'm tired and feel like resting then anyway.
I'll try to post more later. I know you can get through this feeling of overwhelm and come out the other side. For me, it's usually a sign that something is trying to get my attention, and usually it's my subconscious with an important message!
Wishing you the best,
Nutmeg
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Have you ever used EFT? It is very good for anxiety problems. And, from what I've seen in newsletter from www.emofree.com, it is very good for pretty much everything. Use it to let go of fear and the need to control, including the need to know if you will succeed in your tasks.
Also, find an effective visualization technique and PRACTICE it REGULARLY (this is key aspect, ignoring which leads to lack of results). This approach has lead many people to great results. For example, people in advanced stages of MS have recovered a lot -- got up from whealchairs.
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Wow! I am completely overwhelmed by the responses you have all given me. I can't believe how much caring and good advice there is from so many people here on the board. I want to respond to each and every one of you and I will try to do so, but today I am feeling pretty ghastly, so I may have to wait till later.
I am going to bookmare the entire page and keep it as a reference. I have to read everything a few more times, no, many times.
Thank you all so much. I hope to get back to you soon.
Love and appreciation to everybody!
Naya
In Reply to: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 01, 2004 at 21:53:37:
Hi Naya,
I had no idea you were in so much agony. You really do hide it well, with a great sense of humor and upbeat all of the time and a great attitude.
Those of us not dealing with such should be ashamed if we couldn't match your great personality.
I haven't read the others responses but I see you have many, many here who think highly of you and wish you all the best. I know in those responses there are many good suggestions. Hope they work for you!!!
Take care,
D
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 01:14:33:
Naya,
I didn't read this entire post, but I've also heard of nasal calcitonin for osteoporosis (sorry if someone already recommended it). I don't know a lot about it, but it may be worth checking into.
Sapphire
In Reply to: Re: Advice sought - for severely chronically ill people posted by Sapphire [422.532] on December 02, 2004 at 18:17:24:
Hi Sapphire. I tried it, but it is made from salmon and I'm somewhat allergic to it. I can only eat salmon on a rotating basis. Another one bites the dust.
Thanks anyway!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by D [20.1516] on December 02, 2004 at 18:06:07:
Thanks, D! As I said in my original post, I'm just going though a bad spell right now - happens every year when the weather get colder and I can't seem to get enough fresh air. I think there's a connection there.
I try my best to keep an upbeat attitude, but sometimes it just isn't possible, I guess. Thanks for all you said.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Sonja [305.1619] on December 02, 2004 at 04:09:16:
Hi Sonja! Thanks for your post. I actually don't mind living alone at all, except, of course, when I could use some help. I haven't always lived alone at all, but kind of prefer it now.
Before I got sick i did tons of physical excercise, dance, yoga, joggin, walking. I just don't have the strength now. It's hard for me even to get up the stairs to my place. I do try walking a little when the weather is warmer, but can only do about ten minutes every three or fours days.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by S.H.A.P.E. [138.20] on December 02, 2004 at 06:56:31:
Hi SHAPE! No kidding it's unacceptable. I have learned to accept it sometimes, but sometimes I just want to fight it. I will email you.
Thanks!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Nadia [1899.376] on December 02, 2004 at 07:01:50:
Thanks, Nadia. I will answer your email soon, I promise. I really appreciate your concern.
All the best,
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Walt Stoll [9.8] on December 02, 2004 at 08:03:22:
Hi Walt! I have read the article and I know it applies to me. I will order your book. I've been putting that off for too long.
I do have another question, though. I had to stop doing SR because whether lying on my back or in a sitting position, I would feel just awful afterward - as if all the toxins in my gut had floated up to my head during the SR and given me the worst depression and brain fog. Does this make any sense to you? This started happening last October (a year ago), and hasn't gone away.
Do you have any idea what this could be and any suggestions as to what to do about it. Its makes me feel awful for a few hours after the session.
Thanks so much!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Nutmeg [86.74] on December 02, 2004 at 14:32:59:
Hi Nutmeg! I usually do what you suggest and it works out fine. But lately, I get absolutely nothing done. Everything has been piling up undone for months. I have laundry from forever, etc. It's just so frustrating and I feel so helpless and upset that I can't get things done even after weeks and weeks go by. These extremes are what disturb me the most. Something relatively new.
Just hope it passes soon. Thanks as always for your suggestions.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Happygal [2070.23] on December 02, 2004 at 08:37:41:
Hi Jan! What you said in the last sentence of your post is exactly it! Well, not causing my energy to be depleted, but the thought of having to do something causes stress, tension and anxiety that I won't be able to do it which of course, contributes to loss of energy. I am also exhausted after I do anything, but while I'm doing whatever it is, it's not so bad.
Is this procrastination anxiety, I wonder, now that I think of it. I think it's that, coupled with the general feebleness.
Thanks for posting!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by YinYang [1112.1143] on December 02, 2004 at 09:12:55:
Hi Yin Yang! Thanks for the "pep talk". I moved here from PA. Whereabouts are you? I know there are lots of diners in NJ. I wish there were some here so I could hang out in one.
It's too cold for me to go to the beach now, but during the warmer weather, I do. I'm from Boston orginally and living in Allentown just didn't do it for me any more after I quit working, so I moved out here to be near the beach. I'm real close -see it almost every day.
Thanks for all the suggestions! Be well!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by maryb [516.1444] on December 02, 2004 at 10:03:04:
Hi Mary! Some great advice you gave me! I have been in therapy to deal with many things including dealing with illness. Maybe I need a refresher.
What you said about the gut as the primary focus is right on, I think. My problem is that I am so sensitive to so many things that you can take for lgs that I am very limited. I'm pretty sure that's where all the trouble is coming from. So apart from SR, would you mind telling me what else you did to heal your gut? I can't tolerate B vitamins right now either.
Thanks so much for posting and for the positive thoughts.
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by ANN [1003.516] on December 02, 2004 at 09:33:58:
Thanks, Ann. I've done many of the things you mentioned. It sounds like you had quite a time of it. Glad to hear you are so much better. I've done chiropractic, acupuncture, allergy testing, elimination diets, you name it, I've done it. But I haven't tried a macrobiotic diet. Doesn't that include grains? If so, don't know if I could do that. I thinkg my biggest problem is lgs.
Anyway, thanks so much for posting!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Tabby [6.308] on December 02, 2004 at 09:54:56:
Hi Tabby! You have described what I meant very accurately. I will get a hold of that book.
I used to be a very high energy person, so this is like living another life for me. I can accept it most of the time, but occasionally, it just overwhelms me.
Thanks for your thoughts and suggestions. Hope we both do better!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 20:11:06:
the only grain on macrobiotics is brown rice, usually. Also includes Kukicha- a tea made from brown twigs, sometimes fish, or fish broth (though I've never been able to handle fish). Miso soup is part of it.
Fruits are usually avoided, often meatless (there are 7 macrobiotic diets, depending on your state of health), for example, chicken is only used in the least restrictive macro diet for people who are already healthy and just want to maintain.
The diet is mostly rice, legumes, and veggies, but only ones that are not too yin- no potatoes,tomatoes, or eggplant. It tends to be fairly lowfat Seaweed is often included in the vegetables, but you can just eat less strange veggies like broccli, spinach, onions, carrots, and such if you prefer.
In Reply to: Forgot to mention posted by YinYang [1789.1143] on December 02, 2004 at 10:20:01:
Thanks again YY! Political differences are nothing when human compassion is involved. Believe it or not two of my dearesrt friends back in PA are rabid Repubs and we love each other very much. We used to scream and fight at dinners when we'd often get together, but in the end, that wasn't the most important thing. And - belieive it or not, my last great passionate romance was with a born-again Christian and an arch-Repub, but a really crazy guy!
So , you never know! See ya later!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by R. [2970.4] on December 02, 2004 at 15:38:30:
Hi R. No, never have tried it. Something to consider. I used to do a lot of visualizations, but have been really lax about that and SR lately. Should get back to it.
Thanks!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Naya [2016.14] on December 02, 2004 at 19:48:30:
Hi Naya,
If that's it, good! Then look at EXACTLY what you are thinking!! Examine those thoughts -- identify them and come to know exactly what they are -- and then plan a strategy for changing them. It is easy. It is making a substitution -- you substitute energizing thoughts for energy-depleting thoughts. Let me know if you need some help.
Best wishes,
Jan
In Reply to: Re: Advice sought - for severely chronically ill people posted by dd [1706.26] on December 02, 2004 at 09:58:24:
Hi dd! That was such a beautiful post which doesn't surprise me, coming from you. I was in that place you are talking about in a different context years and years ago because of my marriage. I was filled with extreme anxiety and almost went nuts. I did finally give in to the anxiety and discovered my life. That was long before I became sick with cfids. I think I know what you are talking about and you are right, this may be a version of that same thing. You have just opened a door for me by reminding me of the process I went through back then.
I had been in therapy then and have been again since, although not lately. As you said, therapy gave me an intellectual understanding of what I was feeling and a place to vent. But nothing I ever did in therapy came close to that acceptance of the annxiety, of saying ok, this is where I am. And I came out of it into the most freeing and productive period of my life.
That period ended when I got sick. So now, even though I've been through this before, is perhaps a similar thing. I've had periods like this during the illness, too. I just hope I can find my way back to that acceptance you mention.
Thanks so much for your post. I will keep it as a reminder.
All the best to you!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by ANN [1003.516] on December 02, 2004 at 20:18:57:
Hi Ann. I remember - and now I'm dating myself - that I ate a macrobiotic diet way back in the 60's and 70's when it wa the new "in" thing. I should check it out again.
Thanks,
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Happygal [2070.23] on December 02, 2004 at 20:38:16:
Hi Jan! Just how do you do that?
Thanks!
Naya
In Reply to: Re: Advice sought - for severely chronically ill people posted by Sapphire [422.532] on December 02, 2004 at 11:09:22:
Hi Naya,
It was so nice to talk with you on the phone today. Here is that thyroid product which can be obtained without a prescription (recommended by Dr. Teitelbaum). It is called Bio-throid, and can be bought from:
www.biogenesis.co.za/pi-thyroid.asp
or
www.antiaging-systems.com
Talk to you soon,
Sapphire
In Reply to: Re: Advice sought - for severely chronically ill people posted by Sapphire [422.532] on December 02, 2004 at 21:47:45:
Naya,
I checked out these sites, and it now looks like this product is called Nature-throid. Dr. T says it's similar to Armour thyroid.
Hope this helps,
Sapphire