Does anyone else feel sad that no one "gets" how sick they are?

Discussion in 'Fibromyalgia Main Forum' started by onset1990, Dec 3, 2009.

  1. onset1990

    onset1990 Member

    I struggle from time to time, just break down, that no one I know seems to understand how sick I am and the loneliness that comes with decreased activity (even my small family, just my husband and 2 daughters).

    I went to the dentist yesterday and she said she heard the news about XMRV on NPR. I said yes, I really hope this is going to be the year (2010) that I find out what is wrong with me and get treatment.

    I should have felt good that she remembered I have CFS and was concerned. But I felt worse because I compared myself to her and her staff running around all healthy and laughing...and working! It made me cry later. I miss working in an office, as much as I hated it, because at least there was someone who knew you existed every day. At home, I am suffering from severe loneliness and sadness not being part of life. And I felt worse because my hunger for XMRV to end the mystery for us may not pan out and I know it.

    All the advice for seasonal blues is to get out and help somebody or volunteer, it'll make you forget about yourself, but I've been having trouble even taking care of my own daily activities like going to the bank and post office, and keeping house, much less working in my art studio. I get agoraphobic, not because of the outside, but because I have to navigate out there, get confused, get emotional, stressed or pushed around or have to wait in a long line and I can't handle that right now.

    This comes and goes. I don't feel like this all the time. Mostly when a flare has me down for the count. And another thing... my posts seem coherent so no one knows how bad my typos are and how many words i have to fix before i hit send. My fingers don't work together or hit the right keys. But by the time I post, I've fixed it all. I think that's one of the reasons people think of us as better than we think we are. We are really good at hiding all this.

    Most days I try to keep my spirits up. Sometimes I can't.
  2. kat0465

    kat0465 New Member

    Ohh honey,
    i can sure relate to all you have said,it's hard to watch people who are enjoying thier life and remembering we were once like that.
    i can hardly get on my facebook page anymore,all of my friends from school & childhood are all doing great things, getting married, traveling, building houses, having kids(still) and Grandbabies.

    about 10 year ago i got a job in an Automotive Paint supply store,i LOOVED it, it lasted 5 years. then i went to grooming school.... sigh. that was 4 years ago, theres no way i can open up my own shop.i cant work a few hours much less a full day.

    ooh ad i also have to check for typos, or noone could read what i write!
    i still think and feel that 2010 will be a year that changes many lives with this DD, even before the xmrv discovery.

    we all have our days when we can hardly cope, if your like me when i have a good cry & grieve for all the things i lost and am loosing,it makes me stronger to deal with the days to come, good or bad.
    hang in there, and keep posting!! were all here for ya :)
  3. onset1990

    onset1990 Member

    i just hate it when this feeling comes over me. I hate crying. I hate being sad even though I know it can't be avoided. And you're right, Facebook is the worst. All those comings and goings and friends of friends. My life seems so incredibly minited, that was supposed to be limited but that;s how my mind thinks.

    I'm sorry you can't open your own shop. I know how that feels. I retired form full time work, to a studio in my home and that is empty most days. I don't even get the dishes done every day right now. My husband gets perturbed, but he does them when he gets home.

    sometimes i think i should just do everything even if it makes me sick. but then i realize i tried that many times and the price is too high.

    Oh and travel! i'd love to visit my daughter in Australia but it's out of the question. Flying is awful, much less that far.
  4. onset1990

    onset1990 Member

    will look it up but have had horrible experiences with other drugs.

    by the way, fatigue isnt my main symptom, it's cognitive, unable to keep the wheels spinning, and memory probs. Does LDN work for that?
  5. onset1990

    onset1990 Member

    I don't have auto immune probs. according to my tests. I have an over-revved immune response, not the opposite. Also, I take xanax for panic disorder, I know that's not an opioid, but I wonder if it would do the same thing -prevent the xanax from working?

    it's not FDA approved? do you know why not?

    p.s. I can't handle any kind of stimulant because of panic disorder. SSRI's SNRI's and many other drugs others can handle all made me freak out (have tachycardia, high blood pressure and panic).
    [This Message was Edited on 12/03/2009]
  6. AuntTammie

    AuntTammie New Member

    Even those who have finally started to understand that I am really sick and very limited still do not understand just how limited, or how badly overdoing it effects family is still totally pushing me to go to Fl to spend time with them, even though I have told them repeatedly that there is just no way I can do it.....just being on my webcam for 45 minutes with all the chaos created by 2 grandparents, 2 parents, and a 13 yr old, an almost 3 yr old and a 5 month old is enough to completely drain me for several days (not that I am complaining about the webcam - it is soooooo nice to be able to see them)...anyway, if that is far too much, I just don't get how they can possibly think that being there would work (let alone packing and getting there in the first place)

    and that is just one small exp - at least they love me and do understand to some extent - which is so much better than so many of the other people who are clueless, and who range from caring but not getting it to not caring and acting like I am just lazy, making it up, trying to get attention, etc

    oh that last one in particular bothers me sooooo much - at least with the ones who think I am lazy or malingering, I can explain what I was like before getting sick and hope that maybe they will understand that I want to be active and working and busy again....with the ones who seem to think it's about getting attention or something, nothing I say makes a difference - and that is the last thing I want - why on earth would I want attention for this, for being looked at as weak, lazy, etc.....I am not one to desire a lot of attention for most good things, let alone for bad stuff - and for the longest time I went out of my way to downplay this and to try to hide it from others - not to mention that at this point I hardly see anyone bc I am too sick, so how that is supposed to be attention seeking I have no idea!
  7. onset1990

    onset1990 Member

    I was so ambitious and had just got a dream job when I got sick. CFS ruined my life and I'm not supposed to be angry? I'm not supposed to be sad? I'm supposed to get over it? Chronic illness is so difficult, especially when we don't have a real diagnosis and the help of the med community. I can travel a bit, close by, in the RV and do a restful trip like that. It is a lot of work though, to be in an RV and I'm worn out afterward. My husband has to do all the heavy stuff.

    And like you said, even talking to my daughter online is tiring. Having a lunch with a girlfriend recently (I don't have many social events now), I was exhausted, and I couldn't get her to understand I was done, tired, needed to rest. She just went on and on and I felt bad later for avoiding her. I think I really do get misunderstood, seem aloof or uncaring sometimes, even with my husband.

    So, after I wrote this I had to go to the post office. Big mistake. I got very stressed and ended up very angry because of things that occurred. Then the grocery parking lot was insane and when i got home i feel sooo relieved! Ah, peace and quiet! Some days I can do that stuff better than others.

  8. TeaBisqit

    TeaBisqit Member

    I just get judged on how I look. They know something is wrong sometimes, but they don't get how sick I am. Once in awhile, someone will tell me that they knew I wasn't okay that day. But they just don't get how sick.

    Lately, I've been uber sick. I wish people could see on the outside just how sick I feel.
  9. onset1990

    onset1990 Member

    Yes, on the outside we look well a lot of the time. People think we're exaggerating.
    and Glen, I know, I am nervous about another HIV-like response and ostracization. We're damned if we do and damned if we don't (know what's wrong with us)
  10. quanked

    quanked Member

    Yes, I get very sad too. Sad that my life is nothing like I had planned, sad as I watch so much pass me by, sad that I do not know how to explain my disease and sad that even if I did know how to explain it it would not really make that much difference.

    For me, I realize that most people do not even get it with diseases that have known causes and treatment (even if treatment is not that successful). Most of us pay lip service to "knowing" or "understanding" another's lot in life. Man of us know only as far as our own patience and curiosity allows us to understand.

    I was a student intern at a child welfare agency many years ago now. I was given a case of a woman who had an autistic 4 year old. I was there to hook her up to support services. Nothing in my life prepared me for walking into this mother's life. Before going to her home I expected that her life would be difficult, her austistic child would place great demands on her, etc., etc.

    I would never have dreamed that her life (her life, not her husbands life or parents lives--they lived with this family--not her younger son's life) was totally, I mean totally devoted to the care of this 4-year old who was the size of a well developed 8 year-old. The minute I entered the door she closed and locked the door behind me I knew that I had really not known anything of what this woman went through hour to hour, day to day, month to month and so on. The entire house was laid out to protect her 4 yr old from himself. There was nothing on the walls as he was able to bring things down off the wall--the cooking area was gated off from him--everything was about him. She cared for him day and night (he was also epiletic). She was a small woman and he was almost able to overpower her at 4. I could write pages on what this woman lived and yet I can say I do not really understand what it must have been like to be her or this child.

    I feel this way about my life except that it would take a number of days for an onlooker to be able to absorb any sense of what my life is like with CFIDS. Maybe even longer. I have never forgot this woman, her life or her children. And you know, even though she lived with other adults they really "didn't get" what her life was like. That was sad.

    I volunteer a couple of hours a week. Today I really did not feel like going. But I know that the woman I volunteer for counts on me being there now. We do a class for parents who have lost their children and want them back thus they must take various parenting classes. This class is for non--offending parents meaning that they failed to protect their children from the other parent/partner or other family member who had brought harm to the child/ren by various methods. The class went very well. Lots of participation, questions and I took on more than I usually do.

    While driving home I was so happy--glad that I had forced myself to go--glad to part of land of the living if only for a couple of hours. I stopped at the store--was there probably 45 minutes. By the time I got to the car I was moving so slow, I was so tired and I could not wait to get home. I was grateful to my son for being their to unload the car. When I read your post I felt tears because your feelings sound so much like mine and I am always vulnerable when I get too tired. The grieving never ends.

    But, as you said, you do not always feel this down. Me either. Be kind to yourself when you are feeling this way. Only you really know what you need. I am being gentle with myself right now. Taking this time to respond to your post provides me one more opportunity to feel like I am in the land of the living once more.

    [This Message was Edited on 12/03/2009]
  11. onset1990

    onset1990 Member

    it is enormously helpful to hear someone say they understand how it feels to go up and down. I could never handle the stress of helping someone who is stressed. My system just would get too excited and that would wear me out. I see that you gain something form this too though, an awareness, and a sense of meaning in life. That's what I miss, being able to create meaning in my life.

    This culture doesn't really tell us what to do with our emotions. Shelve them so you can work, interact, produce, or even just not cause others undue emotions in response to ours. It's sad because when you are ill you have to go to "the country of illness", which is a book. I'm not sure I liked it, LOL. But it's a great title and an apt description of what we endure. There are the well, and there are the sick. The sick are often shunned, lest you catch it!

    By the way, your user name is pretty funny when said aloud! there must be a story behind it?
  12. 3gs

    3gs New Member

    I can't post to much now but so identified with everyones posts. they are me also.

    Big Hugs to all
  13. Fibrolady37

    Fibrolady37 New Member

    honey bun we all under stand on here its only natural to break down now & again we all do it my darling believe me.
    Ive had times where ive not known which way to turn or who to turn to & then i found this board its the best ive been coming on here for 13 years now.
    Im here for you any time you need to vent or have a good natter dont forget ok honey?
    May god bless you & yours.
  14. mbofov

    mbofov Active Member

    I have one sister (out of 7) who seems to truly get it, how awful CFS is. I feel very lucky to have her because I know many people have no one who gets it. I remember once she or I said something like, maybe she could get CFS, and she reacted with genuine horror just for a second - made me realize how awful this is for someone who lets themself truly imagine themselves in our shoes. Most people don't.

    Having said this, I cushion it for her. I don't tell her all the crappy details - how when I finally get some energy I have to use it doing dishes which have stacked up for days, and maybe take a shower if I'm lucky, not go out and do something I might enjoy. I don't want her to worry, but it does mean a lot that she does try to imagine herself in my place - she's the only I know who does this.

    And the story about the woman and the autistic child is very telling - it does make me wonder how empathetic I would be if the situation were reversed. I keep thinking maybe in the next life (if there is one), some meaning will come out of all of this.

    It is very hard to deal with, there are no easy answers. Thank God (or Al Gore? :-D) for the Internet! and people to talk to here -

  15. AuntTammie

    AuntTammie New Member

    it's nice that you understand, but it also totally sucks that you do (if you know what i mean....I hate feeling like people don't get it, but I don't wish this on anyone either)....sorry about your job - I can't work anymore either & I know it stinks

    and post offices kill do grocery stores.....not just the energy required, but also the lighting is horrible, and the various forms of sensory input (esp scents), etc.....I dread going to either of those places anymore.....if I could afford it, i would start getting groceries delivered
    [This Message was Edited on 12/04/2009]
  16. AuntTammie

    AuntTammie New Member

    I know what you mean about the dishes - I finally got to the pt where I almost always use paper plates and paper dishes, plastic forks and plastic spoons.....cannot really afford them and don't like that they are not environmentally good, but have reached the pt where I just cannot take the energy required to make a meal (even though that usually means sticking something in the microwave or oven and not doing much else to it) and then actually manage to clean up afterward as well....and I used to get so upset about the dishes piling up (I know it's not that big a deal, but it really got to me....and the sight and smell when I did finally manage to tackle them grossed me out so much I felt nauseous)....since I have started using plastic and paper stuff, it has helped so much
  17. TeaBisqit

    TeaBisqit Member

    I've had to use lots of plastic utensils, paper plates, styrofoam cups. I can't do alot of dishes. And the apartment I'm in now doesn't have a dishwasher.

    When i cook, it's one pan or one pot. I can't do the kind of cooking I used to do before I got sick. I can only make something that's fast, easy, and has little cleanup. If it's just a pan, a lid, and a fork, I do it.

    Lately, I've found I'm fond of Steakums. So I've been making Steakums and putting them on bread with some beef gravy. It's fast and easy. And I just have the one pan and lid to deal with.

    It's amazing how much we have to compromise and ration our energy just to get through a day. I'm always having to weigh what I can do. Like if I do this, I can't do that. It's very hard. Especially when I see so many healthy people just breezing through the things that are nearly killing me. I'm the most disabled person in my apartment building and no one knows it. Even the ones in the wheelchairs just ride on out all day. I can't even leave the apartment for days and days on end, not even to get my mail or take the garbage out. The garbage bag always ends up totally full up and sitting there until I can gather some energy to take it out. And the garbage chute is only about fifteen feet down the hall from my door and I can't even do it. It always has to wait. That drives me nuts, too.
  18. mbofov

    mbofov Active Member

    I have a large bag of garbage sitting in my kitchen as I write this. My trash can got filled up so then I put the smaller bag in a large heavy duty black trash bag, sometimes it sits for 3 or 4 days before I can get it out. but today is halfway decent and I'll be able to get it out today I think.

    I live in a mobile home park for seniors, almost all of whom are a fair amount older than me and I am sicker than almost all of them. I feel a little absurd - I have to drive to the clubhouse to pay my rent, I don't walk anywhere in the park. They must think I am verrrry lazy.

    I know exactly what you mean about rationing energy. The other day I blew it when I did the dishes late in the day. I ended up crashing and I think it was the dishes that put me over the edge. I sort of knew better but wanted to get them done.

    I'm going to be starting low-dose naltrexone therapy in about a week. There are people getting some very promising results - go to which has lots of info and a database of people who have tried ldn and their results - a lot are being helped, also see - actually am a little afraid to get my hopes up but we will see - and side effects are very minimal.

  19. mbofov

    mbofov Active Member

    I never thought of paper plates, etc. I feel guilty enough that I don't recycle cans or glassware or plastic. There are no recyle bins where I live so I'd have to drive them somewhere and just can't do it. But I wince every time I throw something recyclable in the trash. This is not an environmentally-friendly disease!

    I don't do a lot of cooking - e.g., I roasted a chicken, and then ate it for 2 or 3 days with bags of salad (I never make a salad any more) or veggies, and then freeze the rest and when I'm feeling pretty good I will make chicken soup and freeze that and have ready made meals. But it did take me 3 days before I could wash the pan I cooked the chicken in ....

    I am going to be starting low-dose naltrexone therapy - see, some people are getting very good results, and also - we'll see -

  20. AuntTammie

    AuntTammie New Member

    I still feel a bit guilty about the paper/plastic stuff, but since using those things has helped so much, I try not to let it bug me that much

    as to the LDN, I have been on it for around 4 months now and have written on here about my experiences with it (very mixed) - the most recent update is in the weight loss and LDN thread....will try to see if I can copy and paste it here

    ok, here it is.....
    I have been on it for awhile now and am still only managing to take 1 mg and have had continually changing effects, so I am trying to figure out which, if any, are from the LDN and which are something else

    ......first week I slept deeply and had a hard time waking up, after that just the opposite....was initially on too high a dose, so it caused a bunch of other problems (and I found out that I needed to stop taking Armour thryoid along with the LDN) ....went down to .5 mg and also had to switch to taking it when I wake up (bc after the first week, it was keeping me awake big time)......stayed at .5 for a couple of months and finally managed to move up to 1.....harder to sleep (even when taking when I wake up), but not terrible, have actually had more pain (but that could just be the weather), have had more sore throats and painful glands (again, could be the LDN or could be something else), have had more periods of time with more energy in general, but am also having more crashes (& I have not increased my total activity level, despite the extra energy, except for one the crashes are not due to that)....was maintaining my weight a little more easily for a little while, but now am gaining (but my stomach is also really, really messed up - everything I eat wants to burp back up or actually vomit back up & a lot of foods do not taste rt anymore....and again I don't know if it is the LDN or somethign else)....anyway, bc of the food issues, I think, I am actually eating more poorly and mainly consuming easily digestible foods (they are the only foods that are sort of staying down) so they are not keeping me full as long, so that could be the cause of the weight gain, and if I let my stomach get empty I get severely nauseous.....and I have been having a lot of pain in my lower rt side (could be stomach, intestinal, appendix, ovarian, etc or the LDN)....also, I have been getting really angry lately and that is not like me at all, and have been a bit more jittery (that has been mild, but is new)......I'm probably forgetting a few things....have noticed that my hair has stopped falling out and my skin is not painfully dry, and the energy increase (when it's there) is really nice

    anyway, you can see why I am having a hard time trying to sort out what is from the LDN and what is not.....I have had some of these issues to a much lesser degree before, but the only thing that has changed at this point is the LDN and all of these things have been substantially increased[This Message was Edited on 12/05/2009]