Guest guest Posted September 17, 2005 Report Share Posted September 17, 2005 There is also something else you could do. You could write up a brief history of your story, and then xerox Hillenbrand's story from the New Yorker, and then distribute this throughout the neighborhood with a note and a bottle of champagne for each person--and i nthe note say, I'm sorry if I don't seem to be a good neighbor at times, and I just want to say that I wish you well and thought this might enlighten you about my situation. ---- The bottle of champagne (or a good pinot grigio or some such) is necessary. People need to be won over. Now, I tend to figure it's not worth it but if I felt upset my neighbors were gossiping, I might. Then sometimes its good to look on the bright side of things--which is financial security (relative) compared to some who are as sick with cfids, but on SSI, trying to make do in trailer homes on $500 bucks of SSI a month. > > Hi , > > I'm very sorry to hear about all that is going on with you. Being ill > is bad enough but having to cope with that is both unfair, and no doubt > adds to the stress levels. > > I suppose the only way to cope with it is (as you do) ignore it and > realise that these are pretty ignorant/small minded people. > > I don't know your age, but it would be great if one of these days you > could be well enough to get back to the work of which you sound so > capable - it would be one in the eye for the doubtors, not to mantion > the enjoyment that simply being well brings. > > Rosie > > > > > > After I was badly injured in a car crash, I sold the big house in the > old > neighborhood and moved to a new one. I was very sick when I moved here > and > I have not been healthy since I moved here. Unfortunately, I have > gotten > sicker and sicker. I have two neighbors who are kind to me. The others > are > absolutely dreadful. I am too ill now to even leave the house (except > when > someone else takes me to medical appointments). Neighbors leave nasty > notes > on my door saying I need to weed my yard or paint my house or whatever > their > own opinions are. Funny thing, though, they don't sign them. So I > ignore > them. > > The two neighbors who speak to me tell me the others make up wild rumors > > about me. This is a country club neighborhood (zero lot line, yard > supposed > to be taken care of by Homeowners' Assn), and they make up stories about > how > I got the money to buy my house. So far none have even suspected the > truth: > I was a lawyer, I made good money and I worked very hard for many, many > years. The house I sold before I moved here was in a very posh area and > I > came out of the sale with a nice chunk of cash. (Oh yeah, the neighbors > > here gossip about how I managed to pay so much down on my house and keep > > such a small mortgage--mortgage for tax purposes.) Don't these people > have > anything to do with their time? I know some of them don't. They are > healthy and retired and they seem to get their entertainment from making > > trouble for other people. > > Last year my neighborhood suffered through three major hurricanes, with > major damage and loss of power and water. I was alone in my house with > no > electricity and no water for a week. Not a single one of my neighbors > knocked on my door to see if I was alive or dead or might need a glass > of > water. > > So if you have people who care for you, and family who love you, you > are, > indeed, the LUCKIEST among us. It is at least half the battle to have > help, > in my opinion. > > > RE: Re: coping with isolation > > > > Perhaps I'm lucky but whereas I don't see all the people I might if I > > were well, I haven't had disbelief from anyone - other than my first > GP. > > In fact I made a lot of new friends when we moved to our present > > neighbourhood, and being pregnant at the time I was very well. That > > probably helped, as now being so unwell, tey know the 'real' me and > > equally know that I wouldn't be pretending to feel like this. All my > > neighbours just think it's really bad luck, not that I'm in any way > > culpable for my illness. > > > > Rosie > > > > > > > > > > It takes telling them again and again, reminding them again and again. > > 80% of former friends will be gone in a whiff, refusing to acknowledge > > the pain, not wanting to be thrown off orbit, not being able to do > > former activities with you anymore; the new ones or the ones who > stay-- > > the ones who stay are terrific, they actually LISTEN and understand, > > but they're rare--new ones...I sometimes say to someone I'm working > > closely with, " So, let me ask you a straightforward question. Do you > > think I'm somaticizing or that the greater part of this is emotional? " > > I'll confront the unspoken thoughts I sense, and then they have to > > say, no, and back off, and I'll explain explicitly what I " m going > > thru, though its a bit like nonstick teflon, they listen and get it > > for a minute, and then later forget it, just don't even remember what > > they were told. Or write a letter, I believe many times they don't > > read it. That's okay. I think you have to maintain your own integrity > > and stay true to yourself and always strive to do the most you can > > with whatever is going on. I've also made some new friends who are > > sort of like me, strong, courageous, but dealing with similar health > > issues. Problem is, most of them can't socialize very often--or some > > live halfway across the country! > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with > > each other, not to give medical advice. If you are interested in any > > treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2005 Report Share Posted September 17, 2005 , taking SAMe (400 to 600 mg) first thing in the morning helps my depression. Then I take my prescribed anti-depressant at bed time. My depression is always much worse in the Fall season for some reason. Just something you might try. Hope it helps. Vickie On Sat, 17 Sep 2005 01:45:06 -0000 " jasonlbreckenridge " <jasonlbreckenridge@...> writes: This has happened to me. I am recently giving in to the antideprsssants i am just so depressed. i have no friends in my area, no job or vehicle anymore, nothing. i live with my parents who are not supportive mentally. So I sit in my room all day or in bed and research CFS/FM and related. I know a lot now about medicine and stuff because of years of reading about this stuff. Without the net, i do not know what i would do. I would be all alone. > > Hi all, > I think I should get ready for complete isolation. I don't want to > loose them. This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2005 Report Share Posted September 17, 2005 SAMe is way to expensive. Here is a tip : the supplement trimethylglycine does the same exact thing as SAMe and is far less expensive. I take 1000mg TMG daily. JL > > > Hi all, > > I think I should get ready for complete isolation. I don't want > to > > loose them. > > > > > This list is intended for patients to share personal experiences with > each other, not to give medical advice. If you are interested in any > treatment discussed here, please consult your doctor. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 It was so helpful to read other people's stories about isolation. There seem to be so many universal themes with this illness -- abandonment, the " herd " turning against the weak, people growing suspicious and outright cruel. I think we're all survivors of the highest order. That said, I wanted to say that L-Tyrosine is the one natural supplement that actually helps me with depression, although it negatively affects my sleep so I can no longer take it. But it might help others with less sensitive sleep problems. Also: when I was able to have a dog (I had a particularly hypoallergenic breed which was easier for me to tolerate, health-wise), even though I had to pay a dog walker to bathe, feed, and walk him, he helpd my isolation more than anything ever has. I think pets of any kind can be great medicine for CFIDS. They are much more reliable than people. My dog died a couple of years ago, and the loss was huge, but I don't regret a single minute of my time with him. Secondly, I would encourage all of those who feel isolated to join other aimed at building CFIDS or MCS communities. There are so many of us who could join forces and start planning small-scale, assisted living communities where we could combine resources and maybe even attract doctors interested in CFIDS/Fibro/MCS. I know it's terrifying to think about leaving the few resources most of us already have, but so many of us are isolated and need to take a realistic approach to the fact that able-bodied people are generally disinterested in making our lives better. Isolation is a symptom that needs to be treated carefully and methodically and in an organized manner like any other symptom. It definitely contributes to our ill health. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 I seem to do this ad nauseum some times but you could also, if we had a good selection of them on the website, just direct people to the Tell Your Story section of the CFS Phoenix website. There they could get real sense of what happens with CFS That is one of the purposes of that section of the website- to educate people who are uninformed but wish to find out about CFS. . Please consider putting your story on the website. Thanks, Cort http://phoenix-cfs.org/The%20SITE/TellYourStoryBegin.htm jill1313 <jenbooks13@...> wrote: There is also something else you could do. You could write up a brief history of your story, and then xerox Hillenbrand's story from the New Yorker, and then distribute this throughout the neighborhood with a note and a bottle of champagne for each person--and i nthe note say, I'm sorry if I don't seem to be a good neighbor at times, and I just want to say that I wish you well and thought this might enlighten you about my situation. ---- The bottle of champagne (or a good pinot grigio or some such) is necessary. People need to be won over. Now, I tend to figure it's not worth it but if I felt upset my neighbors were gossiping, I might. Then sometimes its good to look on the bright side of things--which is financial security (relative) compared to some who are as sick with cfids, but on SSI, trying to make do in trailer homes on $500 bucks of SSI a month. > > Hi , > > I'm very sorry to hear about all that is going on with you. Being ill > is bad enough but having to cope with that is both unfair, and no doubt > adds to the stress levels. > > I suppose the only way to cope with it is (as you do) ignore it and > realise that these are pretty ignorant/small minded people. > > I don't know your age, but it would be great if one of these days you > could be well enough to get back to the work of which you sound so > capable - it would be one in the eye for the doubtors, not to mantion > the enjoyment that simply being well brings. > > Rosie > > > > > > After I was badly injured in a car crash, I sold the big house in the > old > neighborhood and moved to a new one. I was very sick when I moved here > and > I have not been healthy since I moved here. Unfortunately, I have > gotten > sicker and sicker. I have two neighbors who are kind to me. The others > are > absolutely dreadful. I am too ill now to even leave the house (except > when > someone else takes me to medical appointments). Neighbors leave nasty > notes > on my door saying I need to weed my yard or paint my house or whatever > their > own opinions are. Funny thing, though, they don't sign them. So I > ignore > them. > > The two neighbors who speak to me tell me the others make up wild rumors > > about me. This is a country club neighborhood (zero lot line, yard > supposed > to be taken care of by Homeowners' Assn), and they make up stories about > how > I got the money to buy my house. So far none have even suspected the > truth: > I was a lawyer, I made good money and I worked very hard for many, many > years. The house I sold before I moved here was in a very posh area and > I > came out of the sale with a nice chunk of cash. (Oh yeah, the neighbors > > here gossip about how I managed to pay so much down on my house and keep > > such a small mortgage--mortgage for tax purposes.) Don't these people > have > anything to do with their time? I know some of them don't. They are > healthy and retired and they seem to get their entertainment from making > > trouble for other people. > > Last year my neighborhood suffered through three major hurricanes, with > major damage and loss of power and water. I was alone in my house with > no > electricity and no water for a week. Not a single one of my neighbors > knocked on my door to see if I was alive or dead or might need a glass > of > water. > > So if you have people who care for you, and family who love you, you > are, > indeed, the LUCKIEST among us. It is at least half the battle to have > help, > in my opinion. > > > RE: Re: coping with isolation > > > > Perhaps I'm lucky but whereas I don't see all the people I might if I > > were well, I haven't had disbelief from anyone - other than my first > GP. > > In fact I made a lot of new friends when we moved to our present > > neighbourhood, and being pregnant at the time I was very well. That > > probably helped, as now being so unwell, tey know the 'real' me and > > equally know that I wouldn't be pretending to feel like this. All my > > neighbours just think it's really bad luck, not that I'm in any way > > culpable for my illness. > > > > Rosie > > > > > > > > > > It takes telling them again and again, reminding them again and again. > > 80% of former friends will be gone in a whiff, refusing to acknowledge > > the pain, not wanting to be thrown off orbit, not being able to do > > former activities with you anymore; the new ones or the ones who > stay-- > > the ones who stay are terrific, they actually LISTEN and understand, > > but they're rare--new ones...I sometimes say to someone I'm working > > closely with, " So, let me ask you a straightforward question. Do you > > think I'm somaticizing or that the greater part of this is emotional? " > > I'll confront the unspoken thoughts I sense, and then they have to > > say, no, and back off, and I'll explain explicitly what I " m going > > thru, though its a bit like nonstick teflon, they listen and get it > > for a minute, and then later forget it, just don't even remember what > > they were told. Or write a letter, I believe many times they don't > > read it. That's okay. I think you have to maintain your own integrity > > and stay true to yourself and always strive to do the most you can > > with whatever is going on. I've also made some new friends who are > > sort of like me, strong, courageous, but dealing with similar health > > issues. Problem is, most of them can't socialize very often--or some > > live halfway across the country! > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with > > each other, not to give medical advice. If you are interested in any > > treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 Hi : Can you explain how TMG does the same thing as SAMe? I have been taking it and spending so much money on supplements. I have depression and arthritis, so I feel like SAMe is a good thing to take for both of those problems. thanks, Helen > > > > Hi all, > > > I think I should get ready for complete isolation. I don't want > > to > > > loose them. > > > > > > > > > > This list is intended for patients to share personal experiences > with > > each other, not to give medical advice. If you are interested in > any > > treatment discussed here, please consult your doctor. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 As far as I understand, TMG is basically a indirect reverse precursor of SAMe, and it lowers homocysteine rather than raises it like SAMe. So its good all around. I will have to search around for some citations on TMG=SamE to give you the full picture i dont remember the exact mechisnim, perhaps someone here can jump in! > > > > > Hi all, > > > > I think I should get ready for complete isolation. I don't > want > > > to > > > > loose them. > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences > > with > > > each other, not to give medical advice. If you are interested in > > any > > > treatment discussed here, please consult your doctor. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Hi, , Helen and the group. SAMe and TMG have in common the fact that they both support the methionine cycle(also called methylation cycle). However, they do so at different points in the cycle. This cycle can be considered to start at methionine. The first step converts this to SAMe, using the enzyme methionine adenosyltransferase. Next, the SAMe is converted to S- adenosylhomocysteine, which is then converted to homocysteine. From this point, the transsulfuration pathway branches off from homocysteine to eventually produce cysteine (requiring vitamin B6 to do so), and the methionine cycle is closed by converting homocysteine back to methionine. SAMe is upstream of homocysteine, so as said, it can in some cases raise the concentration of homocysteine, particularly if there are blockades or partial blockades beyond homocysteine that prevent its normal reaction rates. Raising homocysteine above normal levels is not a good thing to do, because that is associated with higher rates of heart disease. TMG assists one of the reactions that converts homocysteine back to methionine. There is also a parallel process that does the same thing, which makes use of vitamin B12 and folic acid. These processes both act to close the methionine cycle. While SAMe and TMG both assist the methionine cycle, which one would be most helpful (or perhaps both) in a given case depends on if and where there are any partial blockades. In people in which there is a high state of oxidative stress, it is likely that the enzyme that normally functions to convert methionine to SAMe is inhibited because of the oxidation of its cysteine residues, and this puts a partial blockade in at that point. If this is the case, it is also difficult for the body to produce glutathione, taurine and sulfate, because they are all tied to the transsulfuration pathway that lies downstream of this point. (A normal body produces quite a bit of its cysteine, which is in the transsulfuration pathway) from methionine via the methionine cycle and the transsulfuration pathway. If this can't be done, then the body must rely on cysteine coming in from the diet.) In that case, supplemental SAMe may be helpful in jumpstarting the sulfur metabolism, getting the cysteine level up, getting the glutathione back up, thus removing the state of oxidative stress, and restoring the operation of the enzyme methionine adenosyltransferase, which normally converts methionine to SAMe in the first step of the methionine cycle. Use of substances that supply either cysteine (as cysteine per se, not cystine), such as nondenatured whey protein products, and N-acetylcysteine should also help out in this situation, because they essentially jump into the transsulfuration pathway to supply cysteine directly that can be used to make glutathione, taurine and sulfate. If the glutathione level is restored, the enzyme methionine adenosyltransferase should be able to go back into operation, ramping up the methionine cycle, and then the body can use methionine to make cysteine as is normal. If, on the other hand, a person has a genetic variation in the MTHFR gene that slows down the operation of this enzyme (which is involved in the folic acid system), then there is a partial blockade in closing the methionine cycle, and difficulty in converting homocysteine back to methionine, so that the homocysteine level can rise. In this case TMG should help, and also B12 and folic or folinic acid. So which one would help (or maybe both) really depends on what a person's individual issues are. It's best to test to find out, but if this isn't feasible, a person can try the supplements. I would be cautious about taking very much SAMe, though, if you don't know your homocysteine level, unless you also take B6, B12, TMG and molybdenum to make sure the homocysteine has places to go, and doesn't build up to levels that can cause increased rates of heart disease. The molybdenum participates further along in the transsulfuration pathway, helping to convert sulfite to sulfate. Rich > > > > > > Hi all, > > > > > I think I should get ready for complete isolation. I don't > > want > > > > to > > > > > loose them. > > > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal > experiences > > > with > > > > each other, not to give medical advice. If you are interested > in > > > any > > > > treatment discussed here, please consult your doctor. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Rich, Interested in your comments on SAMe and TMG: have debate trying one or the other (or as it sounds like, both to keep homocysteine down) from time to time. I had my homocysteine levels measured for another reason - slight fear of mini-stroke after hearing loss - and it was found to be quite a bit lower than average, which I took to be a good thing. Sorry, don't have the figure to hand, but can get it. However, doesn't this study: http://news.bbc.co.uk/1/hi/health/4218186.stm (sorry, I don't have a link to the formal paper) cast doubt on the link between high homocysteine and heart risk? Or is it likely to be a blip or some feature of specific post-operative patients? How well otherwise is the link established? Honey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 , I don't know the science of it either, but I started taking TMG on information from Prof. Pall, he explained how TMG is more or less a step or two back in the chain of/to SAMe, because I can't tolerate SAMe, it gives me headaches and i've tried it for months at different times and the headaches just get worse, not better. I do tolerate the TMG well tho. I can't explain the science of it either, cause I dont' understand science well enough! Marcia Re: coping with isolation As far as I understand, TMG is basically a indirect reverse precursor of SAMe, and it lowers homocysteine rather than raises it like SAMe. So its good all around. I will have to search around for some citations on TMG=SamE to give you the full picture i dont remember the exact mechisnim, perhaps someone here can jump in! > > > > > Hi all, > > > > I think I should get ready for complete isolation. I don't > want > > > to > > > > loose them. > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences > > with > > > each other, not to give medical advice. If you are interested in > > any > > > treatment discussed here, please consult your doctor. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.