Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Jan 31, 2009.

  1. Bunchy

    Bunchy New Member

    Hi there,

    I have read a lot of your posts and you seem to be in a similar situation to me with the people around you and being around the same age without having been able to work and have kids.

    I hope you don't mind me saying but I admire you so much.

    Your ability to see the good in people and keep up some sort of relationship with those who are not very supportive and disbelieving at times is something I have yet to get a grip on.

    Also your apparent calmness and acceptance of your situation is amazing.

    Can you tell me how you got to be so good at coping with these things? Did you read self help books or get counselling or did you work it out for yourself?

    It would really help me (and others I am sure) to know how you manage to rise above everything and maintain such dignity in the face of such adversity,

    Love Bunchy x

    PS Hope this poat isn't too full on for you..LOL

  2. jasminetee

    jasminetee Member

    Thanks for your sweet post. :) That made my day. I really appreciate it, I've been feeling so awful.

    I'm glad I come across as positive, I have to confess though that I fall into a negative state of mind all the time. I just keep trying to overcome it. There's a Buddhist saying that life is about constantly overcoming adversity and I've been repeating that to myself a lot lately.

    One of the first things I do when I wake up is turn on background music which I find lifts my spirit. I listen to Soundscapes through Digital TV. It's all soothing instrumental music so it doesn't interfere with my reading, learning, concentrating, thinking... but it keeps me feeling soothed and happy.

    I have read a lot of books and websites that have helped me learn to deal with all the stuff we have to go through. I've gotten the most out of the books about abuse by Patricia Evans, the Boundaries Series by Cloud/Townsend and the Loving What Is and other videos by Byron Katie who I learned about from Jewels here at Prohealth. Byron Katie has a lot of videos over at YouTube. :)

    It's taken a long time for me to go through the mourning over the loss of my dreams of having or adopting children. I'm not completely over it but I'm in a state of acceptance about it most of the time now. I know how truly painful it is to have our dreams completely crushed by these illnesses.

    I have cut some people out of my life because they're toxic to me and that has helped me feel better overall although there's a mourning with that too of course. I've been mourning the relationships I thought I had with loved ones.

    My New Year's Resolution for 2008 was to work on forgiving everybody, so I've been doing that every day for over a year now. First I did a lot of reading about Forgiveness, this site helped me a lot: http://luke173ministries.org/templates/System/default.asp?id=39548

    Now I know to forgive others in my heart is not the same as reconciling with them or trusting them again. This has all helped me a lot.

    I used to be in a major rage almost all the time as I became more and more bedridden, especially in 2007. I now have peace of mind most of the time which is a huge relief although I continue to get worse physically.

    What I try to do is learn as much as I can each day about whatever problems I'm dealing with and I believe in taking what works for me from various sources and integrating them into my own thoughts and philosophies. One of the most helpful things I've learned from others who have gone through a lot of tragedy is to always count your blessings. So far, I've always had some to count.

    Being chronically ill is definitely a very intense ride emotionally and physically but there are still good moments to be cherished. I'm finding that happiness always follows sadness... at least so far. :)

    I hope this helps and I'm happy to discuss more with you.


    [This Message was Edited on 02/03/2009]
  3. Bunchy

    Bunchy New Member

    I agree coming to terms with not having children is a big one - I, like you, am coming to a sort of acceptance now but it still tugs at my heart strings at times and I do get down when I hear of another family friend or friend of a friend etc that is expecting a new baby.

    I do struggle so much with the fact that my parents did not believe I was ill twenty years ago and so I felt I had no choice but to try to work full time after just about making it through college (I fell ill after my first year in college). Because I did not feel I could turn to them when I knew I could not go on without making myself worse, I carried on anyway until I crashed massively and never have recovered from that. In fact it seems that crash damaged my central nervous system which caused all sort of weird complications far more challenging than the initial extreme fatigue.

    Since then (14 years ago) my parents continue to be in denial with my father (with whom I used to be quite close before I was ill) alternately gatting angry with me and alternately ignoring my illness even though it's visibly obvious how ill I am. His denial has greatly saddened me and despite having had a few "deep chats" with him, he carries on as if there is nothing wrong. My Mom is much the same - everything is about her and she acts like a brat if I am visibly struggling. She will always say that everyone has helath problems, not just me! I cannot rely on them for help in any way so I feel I have been "parentless" since I was 19.

    Luckily my DH came to my rescue just before the big crash when I was still working and stuck by me through thick and thin. However even he thinks I complain too much about the lack of support from my parents (and his, who are much the same) and says I should accept they are the way they are and relate to them only on their level (ie chit chat and not a lot else)

    What makes all this harder is that because we live far from them, visits almost always involve them staying several nights with us or us staying several nights with them and I just can't stand it nowadays. The onset of MCS and severe mental fatigue during conversation has made this even harder than it was.

    I don't feel able to cut them out of my life as apart from my sister (with whom I have maintained a close and good relationship) and a few telephone "friends" we have no-one else in our lives. Besides which my DH doesn't want to cut his parents off as he is very close with them - personally I wish I never had to see them again as physically they are too exhausting and also hurtful to me by ignoring my problems and talking loudly and constantly the whole time. They also talk about everyone else's minor illnesses every time we see them but don't ever even ask how I am.

    I'm not sure what qualifies as "toxic" people - I have seen that written here several times but am not sure what qualifies as that. Even though my family (with the exception of my sister and DH) probably all fall into that category, it would be impossible to cut them off and I'm not sure I really want to anyway as I am not that way inclined.

    I know what you mean about being in a constant rage - that is what I have felt about everything I have written in this post so far but like you, I am *trying* to forgive people. I do know that unless a person has walked in another person's shoes, it must be hard for them to understand and therefore support or help appropriately.

    I guess I just expected more from my own parents - however they have major issues of their own from their childhoods and as my sister often says they live in their own world and are both very eccentric possibly because of their own issues.

    I'm writing this not really sure of what I am trying to say - maybe I am trying to learn to be with my family and accept that they are not going to be the way I want them to and for me to be OK with that.

    I was 40 on Monday and in some ways, although I thought I would be very upset about that, it's drawn a line under all the losses of friends, children, work etc.

    I still feel very inferior to other "normals" and a failure to my parents and in-laws, as I have a high achieving family who had expectations of me. My Mom still lies about what I do to her friends!!!

    I just want to learn how to accept all this and how to go on surrounded by people who are in denial of my illness but who still demand to be a part of my life.

    Well what a ramble - I hope you can make sense of this!!

    You are an inspiration to me :)

    Love Bunchy x
  4. jasminetee

    jasminetee Member

    First of all, HAPPY BIRTHDAY!! I hope it was a nice one for you. :) 40 is a big turning point. I turn 45 next month and it's astonishing to me that I could ever be this old.

    My heart goes out to you about your situation. Anyone would find that difficult. I'm glad you have a supportive husband and sister. That's good. Your parents make me mad as I read about them. There is no excuse for the way they are treating you and simultaneously neglecting you. In-laws are a different story in my book. I can understand why they may not be there for us but your parents should be.

    But the reality is that they're not and I think you're doing remarkably well in dealing with that. I can understand you not wanting to cut them off, that is a personal decision and everyone has to do what's right for them. I bet there's a part of you that wants to but mostly you wish they would just come around and be here for you.

    I don't think there's anything you can do or that you should have done to get them to see the situation and give you their support. I'm sure that's frustrating, I know it has been for me. If only there was something we could do about people behaving like that. The only thing that we can change is how we react but even if we're able to do that, I don't think we have complete control over how we feel emotionally about it.

    I do suggest trying to create as much distance from them as you can. That's just my advice though. They are toxic to you, Hon. Anybody who makes you feel bad about yourself is toxic. That's the definition of toxic people. I don't think it's personal either. I agree with you that they're just that way. You have a right to protect yourself though.

    A book that helped me understand the dynamics with my in-laws is Toxic In-laws by Susan Forward. I really recommend that one. I find it helpful to read the reviews for books like this at Amazon too. You'll see many other people going through similar problems and they can help you decide which books are right for you.

    I think you're justified in taking a giant step back from them. Your husband can continue to have a close relationship with them. I've heard someone else on here say that they gave their In-laws back to their husband and it's helped them a lot.

    We don't have much energy and that's a big part of the problem. I don't even have energy for the people that give me support so I know I can't go expending it on those who drain me of what little energy I've got. I know I seem energetic, we all know that paradox though. Nervous energy that causes you to crash. This is one strange illness and it's understandable that most folks don't get it.

    I know what you mean about feeling like a failure. I do too. I have to give myself pep talks all the time and continually read about others in the same situation in order to feel better about it. This is a daily exercise. I think it makes perfect sense we feel this way. Anyone would and everyone in this situation does, I think. Our parents and in-laws would too. I try to keep that in mind and it helps sometimes.

    I was gonna say, one of the main reasons I'm doing ok emotionally in spite of all this is because of all the great people here like you who are willing to share their stories and give so much support with total understanding. Thank you. :)

    Another thing that has helped me is perusing Message Boards for MS and Lupus. They've got the same emotional issues we do, believe it or not. I was stunned. We think we have it so bad because of the lousy name and no test for CFS and FMS being considered a wastebasket illness but that doesn't seem to be the case.

    Even illnesses that are now well known but often invisible like MS often cause family and friends to be judgmental and condescending. They even have similar problems with their doctors that we do. Finding this out made me realize how universal this kind of negative reaction towards chronically ill people is and it's helped me take it all less personally. Of course, that only goes so far. I am human after all. I hurt when people hurt me. I gotta say, for me, limiting my exposure to the toxic ones has helped a great deal.

    You wrote: "I just want to learn how to accept all this and how to go on surrounded by people who are in denial of my illness but who still demand to be a part of my life."

    I feel the same way but what I've learned from all the reading I've done is that that isn't possible. I don't think you can ever accept being mistreated and I don't think you should. I know it hurts. It's awful. I learned that I had to take my power back. I had to stop giving other people power over my life. I do feel more in control now. It's not perfect but it's a lot better.

    Hugs and Prayers,

    [This Message was Edited on 02/06/2009]
  5. Bunchy

    Bunchy New Member

    You are such a sweetie :)

    I'm doing my best to keep the family contact to a minimum as I find it hard to cope with people around physically anyway - let alone people that are a bit "toxic".

    DH finds this hard tho as he likes to be sociable.

    I'm so sorry you continue to worsen but I am sure that the trend will stop one day and hope sincerely for a remission for you some time soon.

    I think you cope amazingly well - I'm afraid I turned to tranquiliisers when things got tough and trying to cut those down has opened another can of worms. Initially they helped but once tolerance developed I found myself coping worse than before. This is complicated by the fact that they DO help with a lot of the CNS symptoms like neuropathy, MCS, pain etc.

    I'm still working with DH to try to sort out a life for us that is more manageable and pleasant for me so I can stop having the mental ups and downs that hamper my health further. Trying to accomodate his social needs alongside my need to live like a hermit is proving stressful and difficult for both of us though.

    I do think "staying in the moment" is what other people have recommended in the past and is the only thing that we can do so as not to go crazy with it all.

    Easier said than done though.

    I hope your DH is supportive of you and I'm glad you have some friends and family that you can trust - my sister is great thank God for that at least!

    I hope we can chat again soon.

    I repeat you are an inspiration to me and many others I'm sure.

    Big gentle hugs,

    Bunchy xx

  6. jasminetee

    jasminetee Member

    You're sweet too! I hope your situation improves. I know how hard it gets when people are like that.

    My hubby is supportive and I'm glad yours is too. I would have a hard time if mine was social but luckily he isn't unless I want to socialize. I just don't have the energy these days plus, socializing can be hard for us. It can be very isolating and we pick up bad vibes easily, at least I do. I'm very sensitive now and feeling super vulnerable. Plus people keep getting ruder and act like they know what they're talking about when they don't in regards to my situation. I hate not being believed as well.

    Thanks so much for being here and caring, Bunchy. :) Good vibes and prayers to ya.


  7. TeaBisqit

    TeaBisqit Member

    Tee, you're a better person than me. I'm old school vendetta. I cannot forgive or forget. I don't care if I have to wait five lifetimes, but I will get payback one way or another. It's like, just unleash me. There must come at least one lifetime where people like us are on top again.

    I can't have children either. And it does bug me. Especially now that I'll be turning forty this year. Too many things we cannot do and cannot have with this disease.

    All I do know is, the disease makes us observers. I think we're meant to see things more clearly and differently because we are no longer a part of their world. And we see a lot.
  8. jasminetee

    jasminetee Member

    That's true we do see a lot. We see through people easier I think. We see their bad side more too unfortunately. Sorry you can't have kids either. I keep hoping something will come along that can help us.

  9. Bunchy

    Bunchy New Member

    Thank you for caring too :)

    Looks like Teabisqit needs a little help here too


    Bunchy x
  10. Bunchy

    Bunchy New Member

    Please try not to get too bitter - I have gone that way for a long time and realised it was making me unhappier. I'm trying very hard to see things more positively now although it can be a losing battle some days.

    There seem to be a few of us around the same age here who have lost all our dreams of kids, work, social life but at least we have each other.

    Teejkay is a fantastic inspiration to me of how to deal with all the stress and distress of family and friends not being there and sometimes being cruel and how to go on living with at least a few smiles every now and then.

    Please know that I read your posts often and I am here and totaly understand how you feel.

    We think we are alone with this and then read another person's post and realise so many are in the same boat.

    I hope we can all find peace with ourselves at least somehow.

    Gentle hugs,

    Bunchy x

  11. TeaBisqit

    TeaBisqit Member

    It's getting harder and harder to find peace and tranquility. But I am very grateful for everyone on this messageboard. It's the only place I can really talk about any of it, aside from my journal. My journal friends don't have the disease, but they feel bad I do. But it's not the same as coming here and being with everyone who is like you.

    I think the thing I just can't understand is how the world and the medical system can keep denying our existence when there are so many of us worldwide now. And I know alot of people in real life who have relatives and friends who are sick. The guy I started to date, his mother has it and she tried to kill herself quite recently because of it. She said she was tired of being sick all the time and didn't want to live like this. He doesn't understand at all. But I understood. The idiot doctors don't understand. They put her in the psych ward for awhile. Then sent her home with stupid happy pills that didn't work.

    How can they keep denying that we are sick and need medical help, not psych help? After all these years and that it's now a pandemic worldwide, this makes no sense.

    Brutal honesty, I'm losing hope and I've had it. I may not kill myself soon, but I sure as hell have a death wish. Who wants to live like this, it's not living, it's not really even existing. It's being a living ghost of your former self, unable to really live. You get to watch your life disappear and everything along with it. You get treated like crap by doctors, relatives, everyone. It's a nightmare that never ends. And I've been going through this for eighteen years. I'm tired of the whole thing.

    I'm supposed to go to a new doc because I got new insurance, but I've been putting it off because I cannot take one more ignorant, stupid, rotten doctor giving me dumb answers. I could rant about that all day.

    Hope is hard to hold onto when the years just keep going by and your life is passing you by and nothing good ever happens.

    I swear, if I don't see a major change by 2012, I just don't want to be here anymore. I've had enough.
  12. jasminetee

    jasminetee Member

    I understand how you feel. I'm in awe of you because of how you manage to keep going and make positive changes in your life in spite of all the crap you keep having to deal with. I'm sure that adversity makes us stronger souls and you will reap the benefits of all this one day. Please hang in there.

    I didn't realize that the guy you had dated had a mother with this. She lives in the US right? And yet she was put in a psych ward? That's terrible.

    One thing that's really helped me a lot has been reading Near Death Experiences. If you're interested try Googling for "NDE and suicide". I've come to the conclusion that no matter how bad things get we're not supposed to quit our lives. I'm not judgmental about suicide though and I certainly understand why you would feel that way. I often do. I think it's fine to think about it but I'm determined now not to act on it. It took me years to come to this conclusion though after doing a lot of studying of people who have died and yet have come back here.

    The biggest deterrent for me is the idea of having to come back here and live through all this again. The other is the thought that I could come back and have it far worse than I do now.

    I know it's hard to keep hoping things will get better. But keep on hoping Tea.

    Hugs and Prayers,

  13. TeaBisqit

    TeaBisqit Member

    I've had three NDE's. I almost died from this disease three times in 91, I was that sick. And I can tell you, if I had known that I would be sick all these years, I wouldn't have fought so hard to come back here.

    Some of what I saw was so beautiful. Other things were future things that were shown to me. What's really interesting is, it wasn't until years and years later that I found that other people with NDE's had been shown the exact same things. It was in a book on them. So then, I knew, the experiences really did happen. It really confirmed it.

    I didn't see a tunnel with light. I saw things I never expected to see.

    There is so much more to this world than just what we can see.

    But I got no answers as to why we are sick or why we are here. About the only thing I can say for sure is 2012 will not be the end of the world and it's not a massive apocalypse. Because I saw us terraforming planets by creating artificial oceans on them and it was in the not too distant future.

    Aside from all that, if you look at the bigger picture of the world right now, you can see that what we are ill with is a form of population control and it has contributed to bringing down the economy since we can no longer work. I believe it is a part of something big, some divine plan to change the way things are in the world. But unfortunately, it's incredibly cruel and unfair to us.

    Staying here is a choice. I just don't know how much longer I can do this. My money is going to run out toward summer, and I'm scared. If they put me back on the foodstamps and medicaid, hopefully it will help, but I still think I'm not going to be able to afford things I need. And I don't know how long I can keep my car since I won't be able to afford to repair it. My very last piece of independence left. I don't even go out more that two or three times in a month, but I like knowing I can.

    I just don't want to live this way anymore. It isn't living. And I'm sick of it all. I feel like I'm being held back from life. It just isn't fair or right. And I have no way of fixing it or making it better. Resistance is futile.
  14. jasminetee

    jasminetee Member

    Thank you for sharing the fact that you had NDEs. Three? Wow! I'm relieved to hear you say that 2012 won't be an apocalypse and the thought of us terraforming other planets is exciting. I'm sorry you didn't get any answers as to why we have to go through this. Although I'm intrigued by what you said about population control. I've heard a lot about that recently and it makes sense to me that someone would be trying to do something about it. Do you think the chemtrails have something to do with it?

    I'm so sorry that your money will run out this summer. That is unfair. I'm praying that something good happens for you.

  15. ladybugmandy

    ladybugmandy Member

    i was just browsing this thread. i really wish i had the faith and strength you guys seem to have. i am working at it...

    some beautiful words of wisdom here.
  16. TeaBisqit

    TeaBisqit Member

    There are a thousand reasons we could have this disease. One interesting theory goes back to the origins of AIDS. Some believe it was a form of population control given in the vaccines in Africa. But it went horribly wrong and leaked out into the rest of the world.

    Lyme is a bioweapon that was leaked out of Plum Island. It was designed to be resistant to antibiotics and it was designed to disable. It works very well at that.

    Micoplasma is also a bioweapon. It was deliberately leaked via mosquito and dairy vector.

    The list goes on. Whatever we have, we were dosed. And getting the government to admit it, who knows how long that could take. At this rate, it probably won't happen in our lifetime unless Obama decides to investigate it.

    There are equally as many reasons why we can't have kids. Between the chemicals and the radiation we're all exposed to every day, we live in a toxic world. It doesn't take a brain surgeon to figure out that since the late 70's, Autism and a million other diseases suddenly rose on up. Modern living has a high price. One that many of us would not have been willing to pay, if given the facts. That will only get worse. They keep dumping more and more chemicals into our food and water. They use ever more toxic chemicals to clean things with. And all this stuff was never meant to be near living organisms.

    2012 is not really an end. It's a restart. If you believe time moves in a circle, but like a ball of twine. It has threads that overlap and interconnect. Things will change. But it won't be an end to all things.
  17. jasminetee

    jasminetee Member

    Hi Sue :)

    Tea, the phrase you wrote "We were dosed" seems so right on. I was always a mosquito magnet and sometimes wonder if that's how I got this.

    It's interesting to hear what you have to say about 2012. I agree that what you describe is the most likely scenario.

  18. TeaBisqit

    TeaBisqit Member

    I was bit by stuff when I was six or even earlier. I remember the bullseye rashes. But I think I got it from green flies on the beach. We lived right on the ocean when I was that young. I used to play in the sand all the time. I got bit by sandfleas a million times. I got green fly bites alot. Then, I was a very active kid and used to climb trees with my friends all the time. I got tick bites when I was eight. And back then, they didn't know about Lyme. I think I was totally doomed. There was no way to avoid something you don't know about.

    Mosquitoes carry all kinds of scary things. And I have known of people who swore they got this disease from a mosquito bite. So I'm not surprised.

    All we can do is hope someone comes up with something. If they can't cure this, at least give us something to give us back most of our lives.
  19. Bunchy

    Bunchy New Member

    I've also had numerous mosquito bites throughout my life - who knows possibly fleas and/or ticks as well??

    I'm also suspicious of pesticides and wood preservatives etc - my Mum always thinks that might have had something to do with my illness.

    The more I think about it the more I think I had this DD coming all my life even tho I did not get sick til I was 19. I remember feeling "not right" vaguely several times when I was younger and I also got mono twice in the year before I got ill. I also had so many ear and chest infections, allergies etc before then.

    I think there is a genetic element to all of this.

    I was taking part in a study in the UK that were going to look at the genes in my blood along with a number of other patients but because of the psychobabblers here in the UK the doctor could not get funding to continue with the research.

    I hope he gets the funding one day as I think that might be the clue - maybe if that is proved the stem cell research might provide treatment/a cure one day???

    I sure hope something good will happen in my lifetime as I, like you, am finding it increasingly difficult to go on like this.

    Gentle hugs,

    Bunchy x
  20. Bunchy

    Bunchy New Member


    Got your email tonight - will reply soon.

    I have my sister visiting this week so I might not get around to writing for a while.

    Hope you are managing to stay OK (as well as you can)

    Love Bunchy x