Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Discussion in 'Lifestyle Management' started by Christopher, Nov 15, 2009.

  1. Marylib

    Marylib Senior Member

    New Zealand
    Thanks for all these posts...

    You guys are both touching, wise and hilarious - keep it up ;)

    Being an inveterate matchmaker, I think getting an ME/CFS cyber-dating thing would be great....but then I think I must be nuts.

    I suppose the ideal thing would be brining together two compatible people with CFS who understand the ...ahem...challenges, but at least one of them must be rich enough to hire servants, cooks, chauffeurs, private nurses etc. Guess I can keep on dreaming.

    Personally, I have an angelic husband who is very stressed out and I keep trying to remind myself that I am worth it....but when I am very ill, all I can think of is finding him his second wife....sad but true:rolleyes:
  2. MEKoan

    MEKoan Senior Member

  3. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    articulate and artful

    Well said Dannybex.
    And Islandfinn.
    I'm tempted to quote everything you said above because I thought you were so very articulate and artful in the way you expressed yourself. I loved the "apologizing for myself" bit and it is so true for me. So everybody, just follow the link back up and reread.

    Thanks everyone for your posts. This is a very moving thread.
  4. Victoria

    Victoria Senior Member

    Melbourne, Australia
    I love this piece marylib.

    Where ARE all the RICH men with CFS?

    (Actually, I don't really want the man, I'll just accept his money, thankyou very much! :D).

    .....but a private chauffeur would be good, since I haven't had a car in 5 years now.

    Victoria :)

    PS Christopher, I feel for you being so young & having CFS. It must be hard, wanting that companionship/friendship/physical partner & finding it when your social activities are limited.

    But Christopher (& other young single people), the best men I've ever met in my younger 20's & 30's were "when I wasn't looking".

    And out of all the men I've been out with, I can honestly say the most fulfilling & rewarding relationships were those with whom I was good friends & shared common interests.

    Other relationships (dare I say it?) based on lust or physical attraction alone, just didn't last the course of time.
  5. mojoey

    mojoey Senior Member

    Thanks everyone

    Thanks for starting this thread Chris. Sometimes I feel like we young men definitely get the short end of the stick because this illness takes away everything that is quintessentially "male" about us, but it is enlightening to see the responses by females alike.

    Mishelle--I really like what you said about finding someone that is compatible with who we were and who we are now. Easier said than done, but I went through a pretty long relationship that ended purely on the basis on my illness. From an outsider's perspective, I can see the sense in that, but having experienced this illness for 5 years, my entire perspective on what to do when shit hits the fan has really shifted. I don't think it has much to do with being a saint as experiencing firsthand an illnesses that boots us down to more visceral needs on Maslow's hierarchy and being thankful for those that have stuck by us (family/friends) without having anything to gain by doing so. In essence, it's about paying it forward. I can honestly say that if I were well, I would not mind dating someone with my illness. I see so much beauty in so many of you by virtue of what you say on these forums, and I think that under our constant veneer of cynicism are incredibly evolved human beings whom, despite getting screwed in just about every way possible, still find sufficient beauty in life to continue with it. When you take a step back and realize what we have all accomplished by simply staying steadfast in our efforts to recover, I think ironically most of us have reached the highest level of Maslow's (self-actualization) just by trying to survive. I for one find that very very attractive in a S.O.

    Chris, I often wonder if I can preemptively flush my prospects down the drain if I never get better. Some of my closest friends tell me that personality trumps the deficits this illness has given me, but they're not the ones that have dated me and "gone through the fire" with me, so to speak. Even my family has gotten to the point of convincing me that I'll have dates lined long as I recover. The fact that I have no desire to date right now does make my lack of appeal easier to swallow.

    One thing I will say: not having a girlfriend at my disposal has made me more self-reliant than I ever imagined myself being. I was always that perennial serial monogamist. My family friends told my family this weekend that my current status is karma for having too many girlfriends in the past (no they weren't joking). Now that I have no choice, I've finally learned to gauge my self-worth independent of anyone else's valuation of me. I have more time to develop my hobbies, share more with my friends and family, and hedge my risks so to speak. There's always a silver lining my friend.
  6. Sunday

    Sunday Senior Member

    Everyone has had such moving and true (and also funny) things to say here. I agree; something about being driven to your knees and carrying on anyway really can make you a better listener, more compassionate, and also more open to beauty.

    The thing that this illness has made me admit, to myself and now to the world, is that I am vulnerable. Well, of course I am: all of life is. There's no way to avoid it. But our crazy culture does its best to ignore it. To reveal weakness is to invite attack, is the way I grew up. Which has actually played hob with my romantic and dating life. Is that better or worse than being chronically ill in a relationship?

    I too wonder whether anyone would find partnering with me worth the price of admission, so to speak. But one great thing CF has done for me is show me that worrying costs WAY too much energy for the return it gives, so when I catch myself wringing my hands over this I try to distract myself with something shiny. Of course all this philosophy may go out the window should I meet someone I'm interested in. But I'm experimenting with just opening to that wavelength and then going about my business; see what happens. Lately, I've been doing little evening rituals to open me up to earthly delights, in all their forms. I keep it pretty simple as I'm often too tired for anything elaborate, but that does seem to be changing things in subtle ways.
  7. brenda

    brenda Senior Member

    Guys and gals

    I think that we can help each other out here and maybe spread some confidence that we do not have to give up on finding a partner and that we can still be masculine and feminine and make someone happy despite our limitations even if all that we can do at present or maybe forever is communicate via the internet.

    We have all got baggage and wrong ideas about the opposite sex, and we have the ideal opportunity to put them to rest here, in an atmosphere of openess and honesty that is harder to come by amongst the fit and well I think. We have developed compassion and that goes a long way. Maybe we can do some healing from past hurts through it.

    What we are lacking is confidence that we are enough as we are, to make that deep emotional connection we all long for, and develop the trust and respect we need to open up our hearts to a sweetheart.

    When we are starting from the same starting line, we can manage the energy required, and once we find someone, the energy will feed on itself.

    So maybe we can dispell some myths.

    As a woman, I do not need a man to be a provider, able to take me on dates, full of witty conversation and in full persuit of me without having to take days or weeks out, in order to feel he is masculine. I do not want someone to impress me. I can respect him despite his 'failure' in wordly terms because I have grown spiritually and see those things as shallow and appreciate qualities that come from suffering.

    I think that we are letting life pass us by if we think we must recover our health first.
  8. m1she11e

    m1she11e Senior Member

    Alot of fun and enlightening things have been said here. It is very interesting to me all the different perspectives. I think some of it this has to do with the different ages of all of us, how long we have been ill, and mainly where we learned to place value in ourselves and others.

    I grew up with a very strong father and two brothers. Physical hard work and athletic fun were what my father brought us up to value. My brothers were "whimps" (caught a typo- it said chimps the first time I wrote it...:rolleyes:) if they didnt work hard with my dad on weekends and if they were not the best at the sports they played. I too had to be this way but also attractive. My dad would not take my mom out to dinner if he didnt like here hair :eek:!!!

    So looking good, being able to wear a tool belt and be the best at whatever sport I played got me positive attention from my dad. (We have not spoken in 10 years BTW. Maybe it was because I started napping in the tool belt.:p)

    It is difficult to let go of the "illusion" of self worth that you were brought up to believe. I think that this it why it is harder for some of us to believe that we are "worthy" of a relationship or that some one would find us "appealing."

    It is hard not to think others will find us "less than" when we find ourselves that way. I know I have a long way to go to change that. I have to change my standards for myself and give myself a break before any one else will.

    At this point though, unless some one comes knocking on my door or knocks me down in the grocery store...I dont think Im gonna be meeting Mr Right any time too. I will say though, after being in non stop relationships for the last 27 years of this illness, Im starting to feel that the stress of a relationship out weighs my loneliness for male company at this point.

    It would have to be a pretty special, one of a kind guy that accidentally knocked on the wrong door and loved flannel pajamas!!!! ;)

  9. markmc20001

    markmc20001 Guest

    no easy solution

    I think I'll ask my doctor if I can put my personals ad in his doctors office. Maybe that will do it.

    Also, thought about writing my personals ad with the heading "wake me when I get there". that was a bit too much though, so I ended up using the disclaimer "naps required".

    My brother had an intersting take on the subject of relationships, it's all about the couples attributes. So for instance you could go for a woman who has some ding against her. Maybe she has a kid, is a little older, maybe she works at some lousy job. In return, she gets a guy who may have more resources, more intelligence, but is tired. So it is kind of a trade off. There is somebody for everybody, and it is a matter of being realistic and adjusting ones expectations.

    The frutrating thing for me, just as mishelle explained, is being attracted a really active woman that wants to snowboard, rockclimb, hike, kayak, and go traveling. However, when I think about it, I can't do that stuff. So reality is like, lets take the dogs for a walk, get a bagel, come back home, and take a nap. After a nap lets wake up have sex, then watch tv for the afternoon. Kind of a hard sell to the really successful and good looking woman who wants to travel the world. Just like I would do if I were healthy. So I guess it comes down to finding somebody where it will be a compromise.
  10. jenbooks

    jenbooks Guest

    You're right, Mark, it's value for value. Besides, walking the dog and having sex and watching t.v. is in the upper percentile for most relationships anyway...I know a number of "healthy" couples who are so stressed by life and kids and the long years of marriage they don't walk the dog together nor have sex anymore.

    So. Your value changes when you get sick, so you have to look at your new status on the ladder (lower) and see who's at your level. Sounds crude but there's some reality in it. You may also have gained some new perspectives (athletics is nice, but a kind heart is more significant). You may find yourself interested in someone who can offer things that you didn't even notice before.

    Even so, it's hard to be sick and that's the truth.
  11. *GG*

    *GG* senior member

    Concord, NH
    To all

    Interesting subject.:(

    Yeah, we all appear normal when out, who wants to go out when not feeling well? Unless you really have to.:eek:

    I have been in a relationship with my girlfriend for over 5 years now. Before I was diagnosed with CFS/CFIDS/ME and last year with Fibro.:mad:

    She is not very supportive or understanding. :mad:I have started to go to support group meetings and she will attend 1 sometime, so she says. :(She says because she lives with me so that she "understands" but does not read any of the information that I email to her.:mad:

    She spends hours upon hours gaming and on Facebook but cannot take the time to educate herself on my conditions?!:confused:

    I often think that she has no compassion, therefore no love? :confused:Although she says she loves me. :confused:Perhaps she is narcissitic?:confused:

    I grew up with 3 brothers and an older sister, rather dysfunctional. But we were still close. :)We spent lots of time playing games, cards, board and outdoor activities. When you visit her parents house, they can all be on their own computers and not interacting as a "family", we grew up very differently.

    Sometimes I wonder if it will work out, if I want it to, if she doesn't change her ways. I will not marry her for sure if she does not change her ways! :cool:She is not very touchy/feely and is not very understanding of children, which has caused a rift with some family and friends! I try to understand her, but really have a hard time comprhending this!:confused:

    I had wanted to have children, love them, but since I have been sick for over 6 years now and am nearly 40 years old. Not so sure, hopefully I can recover and lead a normal life. I will definely advocate for us sufferers, more than I do now, if that day ever comes!
  12. BEG

    BEG Senior Member

    Southeast US
    This Illness Changes Us

    Having been around the block (a couple of times) I feel compelled to comment. I think this post really nails it. Having heard so many times that we don't change as a result of having CFS, we are still the same person, I sucked it up because, afterall, these were PSYCHOLOGISTS. I want it on record that I wholeheartedly disagree. I am no longer the same person internally and externally. This illness has forced me to reevaluate everything in my life. Some things have made me a finer person and others have had a negative effect, but in total I am different. Once very active; now I'm forced to be sedentary, and on and on. You all know what I mean.

    Now here comes my point. I've been married twice. In my first marriage, he was my BEST FRIEND; we were physically and emotionally close, comfortable in our togetherness, best friends at home and companions in sports. Unfortunately, the best-friend marriage didn't make it.

    Next, I married a man who absolutely "took my breath away." Kelly McGillis and Tom Cruise in "Top Gun" had nothing on us. Being empty nesters, established in our careers, we led a story-book life with lots of travel, week-end getaways, outdoor activities, lots of restaurants, etc. Then illness struck. Gone was our way of life.

    Now, given the fact that my illness put BOTH of us in prison, so to speak, I feel that the Best Friend marriage would be a better match to the person I am now. In fact, if my current husband had not known the healthy me, I think he wouldn't even believe in this illness, and may, in fact, have left me for the life he wants.

    I think you must figure out where you are now, be honest with people, and seek companionship with a like-minded individual.

    OK, this has drained me, and I can't believe I told all this personal stuff ON THE INTERNET. All of you are such sensitive people (the illness?), and I am awed by your courage and individuality. There isn't a single person on this forum I want to smack. Oh!Oh! That's a negative change in my personality. I better quit now.
  13. Christopher

    Christopher Senior Member

    Or you can find someone who is willing to be active and not require you to join him or her. It's all about complements.
  14. Christopher

    Christopher Senior Member

    Yep...I think with what we're going through, we may not have as many total relationships as controls, but we have the same number of important ones. If someone cares about you only based on your abilities, intelligence, anything other than spiritually, you're wasting your time because once all of the superficial things lose their luster, all that's left is your inner core.

    I'm glad you have friends that are supportive of you, because the type of negative thinking that your family exhibits is not good for your psyche.

    That is true, especially for younger people. We may never recover fully, so you don't want to be waiting for something to happen that may never come to fruition before you consider "living" again. Part of life is suffering, and while there are some lucky people who suffer minimally, there are others whose sufferings are just as bad as ours, albeit in different ways.
  15. Sunday

    Sunday Senior Member

    So much truth here.

    While I can't deny that there's a part of me that feels as if I'm on the marked-down shelf, there is something about hardships that have made me really aware that everyone is disabled and torn apart in some way. Some of us show it more than others. Maybe part of the secret of relationships is being willing to be with each other and share our burdens.
  16. Michelle

    Michelle Decennial ME/CFS patient

    Portland, OR
    There's no doubt that traditional dating is arduous and/or nearly impossible when you're bedridden. But the internet does provide a way for sick people to meet someone in ways we wouldn't have been able to do before, and I thought I might share my experience. I actually found my partner *because* I was sick. As I was bedridden (and still am), I was in an online chat room back in 2002 in the middle of the afternoon -- something I never would have done had I been well and busy living.

    We were chat buddies initially. We shared similar interests (history, writing, left-leaning politics). After awhile we began flirting. After six months or so, we realized we were into each other. Except he lived in England and I lived in Oregon (NW US), so we had no idea how we'd ever meet.

    A year later I had a significant improvement -- I was still bad enough that I was approved for SSI (Supplemental Security Income or disability for the poor) -- but both Social Security and I thought I would continue to improve. I was interested in a PhD program in the UK, so I visited the school and my ambiguously undefined romantic interest. By the time my health collapsed again, we had become definitively defined girlfriend & boyfriend.

    That was six years ago. We're still together, though we're apart most of the time as I can no longer fly and there are legal and financial limits on how often he can visit (obviously the Damned Disease made the PhD program impossible). It's not ideal, but it is nice having someone who is a part of my life on a daily basis, even if it's only over the phone for all but a handful of months a year.

    He does not have ME/CFS, but is someone who is "low-energy" (as he puts it) and an introvert like me, which makes us more compatible. He knew from the beginning I had ME/CFS, though I don't think it was until we spent time together that he appreciated just how sick I was/am. He's never gone to a support group mtg (though we no longer have them in my city because we're all too sick to show up!) and rarely reads about ME/CFS, but is supportive in terms of making dinner most nights, washing up, never getting tired of hearing me say how tired I am (or at least that's what he says anyway ::grin::), etc.

    In terms of sex, managing a sex life when you're ill requires a lot of imagination, thinking of sex in different ways than just intercourse, and much flexibility. We spend a lot of time talking about our sexual fantasies, even if 80% of it we never act out. We use a lot of groping, toys, and mutual masturbation instead of actual intercourse. Indeed letting him grope me when I'm too weak to do much more than just lay there and let him feel me up often helps raise endorphines, as well as my self-esteem as someone who is sexually attractive when I'm feeling the most worthless as a lover.

    I don't know how the story would have turned out had I not had that year of improvement in 2003. And I don't know how the story will end given our mutual poverty and my illness. But for now I'm just enjoying what I've got. :)
  17. Sunday

    Sunday Senior Member

    That is a nice story, Michelle. Just goes to show the folly of making assumptions (ie I'm sick and mostly housebound, so I won't meet anyone, and if I do, no one will be interested).

    And treasuring what we have now - well, that really is all we have.
  18. sarahg

    sarahg Admin Assistant

    Rock on, Michelle!

    Warning: I am about to say some really lame things. I was thinking about it, and it seems like a pattern, probably for a lot of people, as it seems to have been echoed here that the most phenomenal and life-changingly (so not really a word!) wonderful things happen at the most inopportune times. There's no sense in ever giving up on possibility. And that applies to everything. I have this stupid little paper cutout hanging above my lightswitch in my room, so I have to look at it all the time. I really don't doubt that I long ago cut it out of a magazine ad, actually. When I moved in here it was on top of a box I left here probably 7 years ago. Anyway, it says "the world is wide and anything...ANYTHING can happen"
  19. leelaplay

    leelaplay member


    That's not stupid in my books sarahg - that's a great reminder.

    THe only caveat I have is that I am too grounded in fairy-tales. I always want, no expect, that there will be a happy-ending, or that if I only do the right thing then I will find the happy ending. And of course, just what that happy ending is, is pre-defined in my head. I guess included in that is the idea that the world, and people, are fair.

    All recipes for disaster of course - and together BAM KERPOW

    So I try to remember
    1. that the world is wide and anything can happen
    2. that that may not always be what I define as a good thing so be thoughtful and not naive
    3. that there are more possibilities than my little mind can preconceive
    4. to try to stay open and aware to the possibilities present every second
    5. that most of the world is beyond my control - the old 12-step I think it is - what I (might be able to sometimes) control is my reaction to the world as it presents itself

    Thanks for the reminder! I'm going to add it to my reminder board here

  20. Victoria

    Victoria Senior Member

    Melbourne, Australia

    as I said in an earlier post, the best men in my life have appeared when I wasn't looking.
    So never give up & feel it'll never happen.

    It will happen when you least expect it.

    There is someone for everyone, somewhere in this world. You've just got to ride out the "droughts" and be open to whatever appears.

    Him/Her may appear in disguise :cool:, & you may not recognise what's right in front of your nose.

    And to everyone posting on this thread.......

    Instead of looking for Mr/Mrs Right (for a lifetime), be open to a sign from Mr/Mrs Maybe (for the time being).

    And remember, Friendship & shared interests are a great starting point.

    Victoria :)

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