How Do You Make Them Understand? Help Me, Please.

Discussion in 'Fibromyalgia Main Forum' started by dani78xo, Feb 12, 2007.

  1. dani78xo

    dani78xo New Member

    I thought that, of all the people in my life, my mom would be the one person to understand what I've been through in this past year.

    She has fibromyalgia, too, and she's seen me suffer and agonize over it since I got sick.

    I got into a huge fight with her last night, and it was all about my fibromyalgia. We were at the mall, getting some clothes for me, and we'd only been to Macy's. I was completely exhausted, and I felt like I was going to collapse, but I didn't say anything when she started looking through clothes for something she wanted.

    It got to the point where I was so tired I was hanging off of one of the racks, and I know that I looked stupid but I was doing everything I could to keep from just laying down on the floor and going to sleep.

    She started getting mad at me, and asked if I wanted to be here. I told her I didn't know, because I knew that I needed another shirt, but I was really tired. And she said "Well, you look like you're..." And she stopped, and changed the subject. I knew that what she'd been going to say was that I looked like I was drugged. It upset me, so I just left.

    She got mad at me and we started fighting in the car. She told me that the reason I was tired was because all I did was sit at home. I told her that I couldn't do anything else, and that I would give anything to be normal again.

    And she just blamed me for not taking my vitamins. She told me that if I'd just been taking my vitamins, I'd be normal again, and then I wouldn't have reason to have "pity parties" all of the time.

    I tried to explain to her that I was on vitamins for a while, most of which are too big, and I've always had trouble swallowing pills. The vitamins didn't help. Nothing did, but she blames my entire illness on me, saying that if I'd taken my vitamins, I'd be normal.

    I told her that the vitamins weren't a cure, and that even if they did help me a little, I still wouldn't be able to go on four hour shopping trips, or to just be a normal seventeen year old.

    She spent the rest of the night degrading me and tellingme how I want everyone to pity me and that I never get out and do anything and that all I do is watch TV.

    During the school year, Ican't do anything on school nights. I spend every moment from the time I get out of school to around 6:30 trying to work up the energy to get through homework, alot of which I don't finish because I have to take my sleep meds by 7:30 for them to work by 10:30.

    Yes, I do watch a lot of TV, but when I'm not at doctor's appointments, my head hurts too much most of the time--not full migrianes like I used to have, just headaches, but I still can't read, which is what I'd rather be doing than watch TV.

    She doesn't get it that once I sit down on the couch afterschool, I rarely move. I can't move, because I'm that exhausted. And my doctor didn't even expect for me to beable to do school this year, so I'd guess that I'm doing pretty well for my condition.

    She just thinks that I'd RATHER feel like this, and that I don't do anything. I don't want to be on all of those antidepressants and other pills just so I don't cry all of the time. I don't want those extra symptoms, I don't want the nausea or the withdrawal when I forget them for a few days.

    I have done nothing this past year but wonder what I did to deserve this. I've done nothing but try to convince myself that I'm normal, and that I don't have to be able to go out with friends on a friday night and stay out late. I tell myself that staying home every weekend and seeing a movie with a friend every few weeks isn't bad, and that I don't mind it.

    But I do mind it. I've gotten in spats with teachers who couldn't leave me alone about my absences, I've spent nights having nervous breakdowns because I'm too behind in school and I can't catch up. Everytime I try to act like I'm normal, or that I can handle this, something else kicks me down.

    I would do anything to feel normal again, but I don't want to get my hopes up about something that won't even cure more than one of my symptoms at a time. I need REAL hope, for an actual cure, because without it I wouldn't be this well-put together. So I can't waste false hope on innumerous pills and vitamins, because even if they help a little, I'll still be like this.

    It hurts that the one person who's seen me go through this all, all of the weeks spent with that one migraine, or the nights I sacrifice my health just so I can finish homework, and end up getting 4 hours of sleep. I have nearly killed myself pretending to be normal, and then to have someone criticize me for not being normal enough, and not having the energy to be as active as I should be, it hurts worse than anything the FM or CFS have thrown at me.

    I never complain to her. Most of the time, I keep my pain bottled up. She expects me to be a normal teenager, and to keep up with chores and to take my dogs on walks, which I haven't been able to do since early December, when it was still adequately warm, but I'm not normal.

    And no matter what I do, she refuses to see that. I don't want pity; I've spent so much time hiding the fact that I'm sick, because I don't want people to know. I just want understanding from the people who do know.

    I don't know what to do or say anymore.
  2. survivor13

    survivor13 New Member

    hi sweetheart, you are having the most awful time and yes it is difficult enough to get people outside your family group to understand your limitations and the pain you live with 24/7, the fact that you have this problem in your home with your mother who lets face it should have a modicum of understanding for you given she is a fellow fibromyalgic is unbeleivable. please try to look at the big picture here which is so very hard for you i know,you must feel so alone and wretched in all this. you know how you feel,you know your condition and what makes you feel easier better than anyone, even your mom, but i would suggest that you make a visit to your doctor to see if there is any medication he/she can alter for you to ease your symptoms and make life generally easier for you. maybe recomend a group or a counsellor because you are suffering all alone and you probably could do with someone to talk to in times of need. its really good that you have vented your frustration on this site and im sure you will get loads of replies of support and people offering you the comfort you need. i really dont know what else to suggest apart from if you could chose a time thats mutually ok ish for you both to just try and sit your mother down and tell her exactly how she is making you feel, might be helpful, she may not even realise how she is affecting you. Please try to stay positive though as i think you cope really well for one so young with all that you have to battle with,good luck with your school work and i hope you can find a way to get on top of it so it is nt causing you too much stress as im sure this is nt helping you. Let us know how you go on please and if things get any easier for you which i hope they do
    hugs and kind thoughts xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  3. jodboga

    jodboga New Member

    maybe your mom does understand but feels bad she cannot help you . my son , 17 years old has this disease as well as I do . he misses a lot of school ,I understand but I'm scared he might miss so much that he won't be able to graduate .It is hard to see our children deal with what most adults cannot .This disease robs us of most of lives pleasures . It robs us of a lot of things we would love to be doing . Be patient with your mom and I pray she will understand and comfort you .
  4. pw7575

    pw7575 New Member

    I am so sorry that you mom isn't able to understand what you are going through. Especially since she too has Fibro. I think the other person was right in saying that you should find a time to sit down with her and let her know exactly how you feel.

    Tell her everything that you told us...about how you don't want her pity just her understanding and that you CAN NOT handle doing things that most people your age can do. She should know all of this but maybe she doesn't.

    Maybe she doesn't want it to be she in denial? Sometimes parents don't want for bad things to be happening to their children so they go into a denial. Or maybe since she has fibro and is able to do things ok like shopping than she thinks that you should be able to do them too.

    Let her know that Fibro isn't the same for everyone and just because she can do certain things doesn't mean that you can.

    I am sooo sorry! These illnesses are hard enough without having to go through a lack of understanding from the people you are close to.

    Try to talk to her. It may or may not work. Hopefully you will get through to her but be prepared that she just may not understand. If that is the case just try your best not to let her get to you. I know that is insanely difficult but you really don't need the added stress of her upsetting you.

    A counselor or support group may be a good idea just so that you have people who do understand what you are going through that you can go and talk to whenever you need to.

    We are a good place :) Vent here anytime you need too!! We always understand.

    Take Care and hopefully you are feeling less stressed soon!

  5. michele3322

    michele3322 New Member

    I'm so sorry. I only wish I could give you a hug. It breaks my heart to hear someone so young in so much pain.I know how you feel as do most on this board if only those close to us in life got half of it ,we would be the better for it. Hope is something you can't give up on. You may not have it today but hold on to it that and prayer.I wish I could do more . Michele
  6. hugs4evry1

    hugs4evry1 New Member

    Parenting is hard, parenting an ill child is even harder...

    With that said, I'm sorry your Mom was less than understanding after all you've already been through. It doesn't really make sense, does it?

    But trying to hide the fact that you're sick isn't helping either. How can we blame her too much if you're hiding how you really feel? None of us can read minds, your mother included.

    I've been in similar shoes with my daughter too....not the same situation, just similar. It seems the older our kids get, the more we expect of them. Especially when we see the truth that they'll be leaving our homes soon and should be capable of certain things before they go.

    Responsibility comes to mind....I know I was harder on my daughter the last year she was home because she would be leaving soon and I needed to know in my heart that she was capable of taking care of herself. So things I'd urged her to do seemed even more important.

    But she was hiding too...and I didn't know. I really didn't know the pain she was in (mentally) because she hid it so well. Things were really falling apart for her but she always acted as normal as she could in front of me. (she also has fm along with her mental problems)

    I could have helped her more if I'd known...if she'd only been honest with me.

    Your Mom does have a point about vitamins and supplements though. If you forget to take pills, you need to get a weekly pill reminder and keep it on the kitchen counter so you'll remember to take them first thing in the morning.

    I know you have a hard time taking pills especially the large ones, and my daughter had the same argument too. But I finally talked her into taking the best multi-vitamin I've ever found (The Fibro Complete Multi with Malic Acid that they sell here at Pro Health, and's a horse pill) and she's doing better on it, and has no problem taking it.

    It's hard to help someone who (it can be perceived) won't help themselves.....I'm hoping that she wants the best for you and maybe has found some relief with vitamins and supps so she wants you to try them too. I went through this with my daughter too.

    My daughter hated the fact that she was so young but had to take pills to start her day. It just didn't sit well with her, but she eventually just gave up after hearing me recommend it a thousand times and said I could add them to her pills if I thought it would help. It did, and she found out how much when we ran out this Dec.

    There are some things you can do to help well, lots of fruits and veggies, and helps. Eliminate junk foods from your diet. Although it sound like harping, we really aren't meant to eat so many crap foods that are so common in America.

    Taking supplements can and will help. It's sometimes trial and error to find the right ones, but our bodies don't seem to process things like a 'normal' person does so we need some help in that department.

    Eliminate poisons like Aspartame and flouride from your daily intake. Toothpaste can be found without flouride and since you're so young, you'll benefit from changing brands...the earlier the better.

    You know I understand your fatigue after being mostly homebound for over 2 1/2 years. This isn't me, but it's the way I am now and I have to deal with it. You're doing well by being in school so much this year and you should be proud of yourself.

    If you have a hard time talking to your Mom or finding the right time, write it down and leave it for her to see in a private place where she can take the time she needs to read and digest it. But be honest for her like you were for us. It's best for you too.

    You know I adore you...


    Nancy B
    [This Message was Edited on 02/12/2007]
  7. findmind

    findmind New Member

    go to the optimusundead posting just about yours a little bit, and google it and watch it.

    have your mom and friends watch it too, ok? Then they will know how serious these dds can be and not stay in denial.

  8. findmind

    findmind New Member

    go to the optimusundead posting just about yours a little bit, and google it and watch it.

    have your mom and friends watch it too, ok? Then they will know how serious these dds can be and not stay in denial.

  9. lurkernomore

    lurkernomore New Member

    Could I ask what this optimusundead is? Is it a web site or URL? I am interested in reading it too! If it helps explain this DD to others I would be eternally grateful!

    And to Dani, is there any way that you could be a little more forthcoming with your mother, especially since she does have fibro herself? Perhaps she is of the mind that since you are so young, it cannot be as hard on you. But we all, on this board know that fibro is different for every single person!

    You seem like a very soft spoken person who does not want to concern your mother. But in doing so, you may be leading her to think that you are actually in better shape than you are.We older folks tend to do this a lot, with our doctors as well as our families and then we pay the price by having people think that we really okay when the truth is anything but that!

    As other posters have suggested, could you maybe find a time to just sit down and explain to your mother that you are doing the very best that you can at this point? You are so young and I feel very hopeful that at some point in your life there just may be some answers to this puzzling illness. But for now, you need the support and compassion of your mother and your educators.

    You mention that you are faltering in school. Is there some type of program that you could do, perhaps at home? Maybe half days at school and half at home...with a doctor's recommendation?

    I really feel for you Dani and we on this board know and believe in you. I wish you all the best and hope I speak for everyone in saying that better days really do lie ahead for you. Speak up for yourself, maybe have your mother to speak with your doctor so she can see what you are up against. Wishing you the best!
  10. ravenpaige

    ravenpaige New Member

    So many people have already given you lots of good advice, so I won't repeat it here. But one thing I haven't seen yet which may help is if you try to explain to your mom that she needs to see you as a different person now.

    Since I also have a daughter about your age (she's almost 17), and I also have fibromyalgia/CFS (as does my daughter), I think I can understand what your mother is going through. It is very hard for a person to deal with this illness themselves, but even harder when their child is also sick.

    Since my daughter was always very bright, determined and dependable before she got sick, I think I learned to think of her that way. But when she got sick, suddenly she couldn't do the same things anymore. This illness changes so many things about what a person is able to do, it is almost like they've become a different person. For the longest time with my daughter, I didn't want to accept that. I kept thinking if I could come up with the right pill or the right diet, the right something, that I would be able to help her get back to where she was before.

    I finally had to realize that this was very hurtful to my daughter, and this was the last thing I wanted to do, to hurt her more! But I had to change my way of seeing her, to realize that she was really a different person now because of the illness, and that I needed to start accepting her as the person she was now. So now, when she makes it to school 3 days in a row, I tell her how wonderful that is. And when she tells me she just can't do something because she hurts too much now, I don't try to push her to do more. I know she has to find her own way.

    And you do too. It may help to explain to your mom that, although you and she have the same name for the disease, this can mean very different things for each person, even in the same family. You will probably have different symptoms from hers, different levels of functioning. You can probably do some things she can't, and vice versa. Even your treatments will likely be different, and some things that work for her may not work for you at all, or not in the same way. The most frustrating thing about this disease is that it is slightly different for everyone, and so each person has to figure out for themselves what works.

    Your mother and your doctor both will suggest treatments that can help, and they are giving the best advice they can, but you are the only one who will know whether something is helping or not. Try to listen to your body, and give each thing a chance to help. But if it's not helping or if it's making things worse, you need to tell them and then try something else.

    It may also really help if you can find a good counselor to talk to. This may not be easy to find, because you really want to find one who honestly believes you have a real, organic illness, and won't try to tell you it's all in your head. But if you find one, they can probably help you to develop coping skills, perhaps better than your mom can. Unfortunately, when your mom trys to help you in this way, it probably sounds to you like she's criticizing. But when suggestions come from someone else, you may be able to hear them better as suggestions, and not critisisms.

    Finally, I hope you never give up hope for a cure, because I really believe they will find one someday. It may be soon, but it also may be a long time. So while always hoping, also take the same advice I'm suggesting for your mother, and use it for yourself. What and how you are right now is fine...wonderful in fact. For each of us, we are handed challenges that we can work to meet, and it doesn't really matter, in the end, if that challenge is winning the marathon, or just walking across the room. If it's hard for you, and you manage to succeed, then you are a success! Praise yourself for it, even if no one else will. Down inside, you are and will always be the same person you have always been, your unique "you" that is wonderful just the way you are. Many people, whether sick or not, successful in the eyes of the world, or not--many have trouble learning this simple truth: you are loveable, not because of what you do, but just because you _are_. If you can learn that lesson, I guarantee you will be prepared to face whatever challenges life will throw at you.

    Finally, you may want to consider just showing your mom some of the responses from here. Your mom probably feels pretty alone and overwhelmed, but knowing that there are others facing similar problems can sometimes help. And sometimes hearing something said in just a slightly different way can suddenly give us insight.

    All the best. Here's to happier days.

  11. sues1

    sues1 New Member

    See this posting that was done today....

    What IS CFS/Fibro/M.E. ..Video explanation ..what it feels like OptimusUndead (posters name)

    It has a great video, watch it then have your Mom watch it.

    I understand about being in a store and feeling like you are going to fall over and go to sleep....I get like that also.

    Apparently your Mom's isn't as bad. I am assuming that she is using tough love, wanting you to work through this and get better, etc. Well, that does not work, makes it worse.

    I would check on schooling differently as others has suggested.

    Bless you and my thoughts are with you........Susan
  12. findmind

    findmind New Member

    I just got back and saw my posting wasn't clearly stated...

    Thanks for clearing it up for us...

  13. dani78xo

    dani78xo New Member

    My mom does have fibromyalgia, too, but I think she's nearly in remission from it (she had breast cancer several years back, and her doctors thought that the tamoxifen caused the fibromyalgia). I remember when she used to sleep in bed all day and not want to do anything, but I didn't understand back then.

    I do now, but the whole situation is reversed; I'm the one laying in bed all of the time.

    I promised myself after I got diagnosed that I would fight the fibromyalgia and CFS and do everything I could to keep them from ruling my life; I think that's the only reason I've gotten this far through school, coupled with the fact that our "winter" up until these past few weeks, was as warm as spring.

    Because of that promise, I told myself I wouldn't lag behind in school. I won't graduate late, because I know that it would ruin me and send me into an even worse depression if I got held back (I only salvaged one credit from school last year, when I got sick, I had to drop all of my classes but one.)

    Doing full days is the only way I'd get enough credits to graduate next year, so I am. If I fail even one class, I get held back, but I haven't thus far. The only option other than doing full days would be doing half days, which wouldn't give me enough credits.

    And I can't do homeschooling, because as far as the school is concerned, if I'm here for even ONE day, I'm not eligible for a tutor. (They have this rule where you're only eligible for a tutor if you're absent from school for at least ten consecutive days. If I even make it through one period, or even half an hour, of one day, I lose eligibility.) So a tutor isn't an option.

    I do let my guard down a bit more when I'm at home, and not around friends or anyone else, but I rarely complain, except to just say that I'm tired if my mom asks me what's wrong.

    I don't go to stores anymore, and this is why. I can't do malls. I dont' even have to walk more than a hundred feet into the building, and within twenty minutes I want to go home. I hate it, because I rarely ever get shopping done, but there's nothing I can do. I know my limits, and I know that when I feel like going to sleep on the floor, I need to leave, or risk getting sick for the next few days.

    I've tried explaining to my mom that no matter what I do, I'm not going to feel like a regular teenager. I wish that I would, but I've come to terms with the fact that it's not going to happen.

    No matter what I say, though, she's convinced that if I wasn't so "pitiful" all of the time, I wouldn't feel sick.

    As it is, the stress from our spat has kept me out of school for the past two days with horrible migraines, pain, and increased exhaustion.

    I do have a therapist, though I see him relatively less often now, and sporadically, because there are some days when I can't drag myself there for an hour after I've already been through school.

    I'm looking into a support group that's relatively close to me, but it's about half an hour away, and only once a month, so I'm not sure how that's going to turn out.

    I am going to try to take vitamins more regularly. The problem is, ever since all of this happened, I have virtually no memory. I forget to do the simplest things, and it makes me feel awful, but everytime I begin taking the vitamins again, I'll forget them the next day. I can't keep them out in the open because I have two dogs, one being a very nosy beagle.

    And when I do remember them some nights, I'm so drugged up from sleep meds that I don't realize what I'm doing, and can't put two and two together to take the vitamins.

    It's hard, because my two best friends, who are the only people outside of my family that know about my condition, are so understanding. They ask me how I'm doing, and while they did get a little freaked out at the beginning, they try to picture what I'm going through, and don't get mad if I have to leave early from somewhere or if I have to cancel on them because I don't feel well enough.

    My mom's BEEN through it, and she's not even half as understanding as they are. If I cancel something on her, she gets mad. She gets mad because I'm not active enough, or that I don't try hard enough. She just doesn't understand that I have my LIMITS, and i'm trying to learn them so I don't make myself so sick anymore; she doesn't understand that I'm not the same person I was a little over a year ago.

    I think maybe my words the other night might have gotten through a little bit, because she's straying away from the subject, and not getting mad when I can't go to school or take the dogs for a walk.

    I'll watch that video, too. Thanks for all the replies.
  14. lilaclover30

    lilaclover30 New Member

    You are 17, I am 76. But our problems are the same. my almost 82 hubby and my 53 yr, old daughter won't understand. My daughter, who is a real sweetheart, gets angry at the word!!!

    My hubby let my shovel snow on the walk this morni8ng, 6"
    deep and in the midst of a blizzard, so he could go to coffee. I have felt awful all day8. He just doesn't understand.

    dani, now know that age doesn't make a difference. Ii feel that my being ill for the past 3 1/2 yrs. makes my daughter afraid that i can't care for her dad and I often wonder if he doesn't feel the same.

    Yes, hubby8 and I have lots of arguements and I cry a lot.

    Just hand in there. You are young and a cu8re or help may be just around the corner.

    Gentle hugs
  15. mje

    mje New Member

    I see on one of your later posts that you are thinking of joining a support group. I think it would be helpful if you and your mother would go together. Perhaps some things would come forth in a more oblique fashion between you and your mom and reactions would not be as harsh. Even at once a month it should be helpful. We did have one in our community and I found it helpful and unfortunately
    it folded a few years ago. I hope you are taking something for your mood. 10 mg. of Prozac a day gave me a real boost. My primary physician said it would "smooth
    things over" and that is exactly what happened. I tried to switch to Same-E about a year ago but found I more all over achiness and pain. So I started Prozac again.
    Good luck, MJE

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