mother-inlaw just don`t get it, please help!!!!

Discussion in 'Fibromyalgia Main Forum' started by larry11, Nov 10, 2005.

  1. larry11

    larry11 New Member

    It`s me , I`ve been reading post on the board, but haven`t posted in a while.

    I am a man who used to work from sunrise til 8 - 9 at night. I have realized over the years how i missed a lot of my childrens growing up, so i have slacked off for a few years now.

    My disease started back in march- april of this year, and for what i can see, it isn`t getting any better. I started on vicodin to tramadol to fentlnyl patch, and presently on percocet. the percocet is now starting to lose it`s affect the same as the tramadol did.

    Anyway, the reason i need your help is to maybe let you write a short story about where you are in your disease and how it has changed your life. Your symtoms and what you are no longer able to do, and if you can not work and on social security please include that also

    My wife and i have never had to deprive our children of anything, but right now we had no choice but to say no! My illness has me at the point where very seldom can i work a 8-9 hour day, it`s more like 5-6 comfortably, Ican`t say for sure that I`m not going to stay at this level, but it hasn`t let up (FM) since i found out this is what I have....

    My daughter is 11 yrs old and very musically inclined, she plays the saxaphone. The school music class is going to NYC yo see the LION KING, the price to parents is $100, and we don`t have it, (usually we would) I didn`t ask to borrow cause we owe enough people that I`m not sure how were going to pay them back. Well she sort of rubbed it in my wifes face how we don`t have the money. The way i look at is things might and very likely get much worse finacially if it comes to me not being able to work at all.

    I do not think she understands the unpleasentness that this DD is capable of, and I would like all of you who read this to write a little something about how it has changed your life from what you were to what you are now, i know that it affects everyone differently, but it really hurts me phyically and mentally. What I`m going to do is print out all of your responses to this post and i appreciate everyone in advance who participates
  2. Empower

    Empower New Member

    I too was the Energizer Bunny. Used to work all day and then come home and clean my entire house from top to bottom and never think a thing of it. Now I am lucky if my house gets cleaned at all!

    I have both FMS and CFS. The FMS started gradually and was tolerable. Then the CFS kicked in, and I was done. The pain also has become worse.

    I try to get outside once a day to do something, but it is very difficult. I try not to lay in bed, but sometimes I just collapse.

    I am very depressed and frustrated about all of this and have tried both conventional and non-conventional treatments, although not all of them.

  3. chopindog

    chopindog New Member

    Heres a bit of my story. I am 28 years old, i became ill with viral meningitis over a year ago now. I then ended up with Mono, then post viral syndrome and now have been diagnosed with CFIDS and fibro and myofascial pain and neurogenic hypotension and tachycardia. Before I became Ill I was a RN I worked on a cancer unit and planned to become a hospice nurse. I worked my way through 5 years of college without any financial help from my parents. In nursing school I was taking anywhere from 16 to 21 credit hours a semester. On top of this I worked 32 hours a week during the winter. and at times 60 to 70 hours a week during the summer. (so I could save up to pay bills and school and books for the school year.)I believed that being a nurse was my calling, that I was blessed by god to have found a job that I was so good at and that I loved to do. At 27 years old I became Ill and have not been able to work since then! I lost everything I owned and lost most of my friends because they don't understand this illness, and who wants to be around a sick person all the time? I had to leave my home,the town I grew up in, in colorado. And had to move to Utah to live with my Dad. This illness is ruthless! And I don't care how tough of a person you are. If you get it as badly as I have, it will knock your life right out from under you!I have gone through many horrible things in my short life, but I have always fought back, and always pushed forward. This illness doesn't allow that! The harder you push the harder you fall!!!! (show her my profile, that picture is a picture of me 2 months before I got Ill.)I have not given up, but I have learned you can only fight it so much without hurting your self in the process. This disease is real! And it's mean! So just because you can't see it doesn't mean it is not there! Most of the people on this board are educated, intelligent, and extremely hard working people with wonderfull hearts. We are not lazy drug seeking jerks, we are not crazy! We are simply people who have been effected by a very complicated and mean disease! Joy
  4. kaiasmom

    kaiasmom New Member

    Hi Larry,

    I too was just diagnosed spring time of this year, although I've been suffering for years. I'm not sure where to begin. I had my daughter when I was 18, and have had to work hard to support us. I have always been a very indpendent person. I have never liked to accept help from anyone, pride I guess, but I seem to have lost some of that. My fiance is wonderful - I depend on him like I have never depended on anyone before. For the first time in my life, I am afraid to be alone. I can no longer care for myself & my daughter without help.

    I still work full time, but only because we barely get by WITH my paycheck, which is quite a bit larger than my fiance's. It is all I can do to get through the day, to then go home to cook dinner, work on homework w/the kids (8 yo girl is mine & 7 yo by is my fiance's, but I call him mine too), bathe them, read with them, and whatever else the evening calls for. By the time my body hits the bed I can hardly move.

    My worst symptom is the is excruciating all the time, and I am totally exhausted all the time. I can't remember the last time I wasn't tired. I also have IBS, GERD, Carpal Tunnel, degenerating discs in my neck-neck & shoulders are the worst with the pain, but also my low back, butt, legs, wrists, hands - everything hurts at one time or another - if not all at the same time.

    I too have been through all kinds of pain meds, from Darvocet to Vicodin to Tylenol 3 to Oxycontin and am currently on MS Contin (Morphine Sulfate). I have also been through numerous anti-inflamatories & muscle relaxers.

    I feel like I am watching my life fly by w/o me being able to participate. When my fiance takes the kids out to play baseball or ride bikes, I really want to go along, but I usually end up taking a nap while it's quiet in the house & the kids are entertained. It feels like I don't get to have any fun with them anymore.

    I don't think anyone that does not experience what we experience could possibly have any idea what it is like, or how bad it makes us feel, in so many ways. It would be impossible to truly understand how debilitating it is.

    I also have to worry about my upcoming wedding. We are having it in North Carolina (I live in California) where my fiance is from. So, I have not met most of the people who will be there (Except his dad & step-mom who are wonderful). The main reason for this is so that I don't have to plan and execute it all-cause it would never happen. I am worried though. I am only 26, look fine & act sick & tired all the time. I'm not sure everyone will understand and am not sure how to handle the situation. Just the plane ride will likely nearly kill me, not to mention the time change, so I'm thinking I'll be in pretty bad shape just by the time we get there!!

    Well, I think this is probably more than enough about me!! Good luck!

  5. tamsyn

    tamsyn Member

    Dear Larry,

    It's very difficult to deal with the financial stress, the pain, the exhaustion and the other symptoms of this illness. It's even worse when those around you don't understand what you're going through. How about printing out information off the web (web sites like this one) that describe the illness? If your mother in law saw the symptoms printed out, maybe she would get a better idea of what you're dealing with and see that this is a well-defined illness in the medical community and not just something you're 'faking'. Put the words 'symptoms' and 'fibromyalgia' into Google or a search engine; you'll find plenty of scientific, medical descriptions of this DD that your m-in-law cannot argue with. Also, does your wife understand the reality of this illness? If so, could she try to explain things to her mother on your behalf? Good luck.

  6. JLH

    JLH New Member

    A lot of children who have never had to be deprived of anything tend to be spoiled. I'm not saying that it is bad to spoil children, because if you are able to provide them with many things, they are lucky, too.

    However, since she has been used to getting pretty much what she wants and now you are unable to provide those things, she is starting to notice!

    It's going to take a lot of explaining to her and your other children, if you have others, that things are going to change. You need to sit down and have a family meeting and explain to them why. They might say they understand, but they won't! When "everybody else" is doing something that she can't, she will soon forget.

    And ... her being 11 is a bad thing, too! At that age (pre-teen through their teens) is the worst time to talk to them about anything! They don't care what you say, what your opinion is, they know everything, etc.!

    She will say things that hurt you, but you, too, have to understand that it's just her age, and she is taking her anger out on you for not being allowed to go on the trip.

    Maybe she could start doing some odd jobs for neighbors to earn some money. Like walking an elderly person's dog, cleaning house (light housework) for someone on the weekend, etc.

    You didn't mention if your wife worked or not. If she currently doesn't work, maybe she could get a part-time or full-time job to help out. A lot of us women have worked all of our lives--me included! I worked for 30 years and raised 3 children while doing so. Most women are more than willing to work to help out financially around the house.

    The title of your post indicates that your MIL just doesn't get it, yet if I remember correctly, your post didn't mention her. Are these letters for the MIL to understand what fibro has done to others? If so, I would not dignify your MIL with a response! You do not have to justify to her why you are ill and feel the way that you do. If she doesn't believe you, just tough! I personally get tired of explaining to others how I feel!

    I can't remember if any of that info is in my bio or not, but it's close to 1:00 am now and I don't have enough time to tell you my story--besides, I have so many other health problems that contribute towards how I feel, that mine would not be accurate.

    And ... I am sure that your daughter is not the ONLY child that is unable to go on the trip to see the Lion King--I am sure that are plenty of others. When my kids used to pull this on me, I would end up finding out that those who actually got to go on these type trips were in the minority!!

    Hope family situations look up for you soon, and also hope that you get to feeling better.

  7. PVLady

    PVLady New Member

    The only med that ever helped me is Buprenorphrine. It is not commonly prescribed but it did truly help my fibro more than anything.

    Buprenophrine is also called Subutex and is not only used for pain control but it is given to help people get off opiates with no withdrawals.

    They are not sure exactly how this drug works but it does block pain receptors in your brain.

    Originally I used MS Contin for almost nine months. I could not tolerate the side effects, (that is why I went to Subutex, to get off the MS Contin without withdrawal).

    A doctor must be specially licensed to prescribe Subutex, most doctors who treat addiction prescribe Subutex.

    I want you to know I went from being very sick for over 10 years, housebound and in bed most of the time, to being able to work full time again. I am age 54.

    I still have fibro, and must take care of myself. It is very hard for me to even talk about this. Since I am better now, I have a hard time thinking back about the bad years.

    Another problem that surfaced was anxiety with OCD problems. I just started 25 of Zoloft daily. It seems to be helping already.

    [This Message was Edited on 11/10/2005]
  8. sues1

    sues1 New Member

    I have worked much of my life. Sometimes three different shifts in the same week while raising three children. I cooked dinners from "scratch" and cleaned and was always on the go. I was a "What ever it takes" person. Independent and worked long hours. My family was #1.

    Most that gets this disease were hard workers, good work ethics and intelligent. HIghly educated people, sometimes over hundreds of workers, all of a sudden could not spell or speak the right words and so forth.

    I fell and the hurt never went away and the pain would jump around. First one leg, then the other and then my arm,(etc.) sometimes everything would hurt at once. First Dr. told me that it was impossible for this to be like it was.

    But my regular Dr. told me that I had Fibro. The pain was terrible. I continued to work, but I sure was having problems doing so. My husband had to cook a lot of the time. Sometimes he'd cut my meat on a plate,a couple of times he fed me, as I could not. I had been a very strong lady. I could not peel potatoes. Sitting upright was a chore!

    A few months later I got the flu, just a ordinary flu and never recovered from it.

    Dr. then said I had CFIDS. It was all to crazy, I could not accept either disease as truth at first.

    It is possible that they are one and the same.

    I always loved books but I could no longer enjoy them.
    I could hardly read, words jumped around. Sometimes I had tunnel vision and it hurt to be in light and it made me sick at my stomach. My head hurt and to this day I can not stand for anyone to touch the top of my head. I would end up sitting down in grocery store and my hubby would finish the shopping as I could hardly walk. I was both weak and in pain. I slept very poorily. Pain kept me awake.

    I ran a low grade fever every afternoon. So tired!
    I could not think right, I used the wrong words all the time. I could barely spell, I could not remember how. There is MUCH more than this, but I was living in a bad dream, a nightmare. Mentally and physically..I was shot.

    I started doing crossword puzzles. That was hard for a person that their eyes could not focus right, that words stumped me, so did the spelling. But in time it did help me
    quite a bit. Still have the problems but not as severe.
    I do not read as I did.

    I spent so much money, on top of good health insurance, going from Dr. to Dr. from test to test. I was determined to get over this!

    I still can not read a manual or instructions very well. I can not drive far from home. I forget how to go to other towns. I can not remember the right roads. I used to! I also get muscle spasms and charlie horses, etc.

    I do not travel well as it hurts so much, I sleep too much
    now days. But I have to. Every day os different. I miss various functions that I want to attend. I can not sit in a movie theatre.....seats uncomfortable and air conditiong makes me hurt more. Can not stand perfumes and all around me. So sensitive to odors and flowers and all.

    I have learned to accept what I can do and can not do. I have worked to be better, but I still suffer quite a bit.
    I have learned to do things differently.

    My children were out on their own when this happened. For that I am thankful. Having a loving helpful husband also is a true blessing. He knows that I am not lazy and knows that I hurt and all. I feel bad that he has to suffer also.

    We already feel guilty that we put our loved ones through this. When they believe in you, it is a bit easier. Sometimes I have felt that I needed to just kick myself in the backside and get to it. It was to unreal. But I could not, even though I tried all I could to get back to normal.

    People will say......well I get very tired also! (ETC.) How can we explain this tiredness? It is so different, it is like your pilot light has burnt out and you can not find a spark of energy. I feel as If I have the worse flu ever and got hit by a truck and fell down a flight of stairs, in one day...and that is on my good days! <Grin>.

    I finally had to stop working. I had goals and was inspired to reach them that my job would afford me to do. I am on disablity through my retirement. I would rather be on the road to my old goals. And Dancing with my husband, climb a tree, make snow angels in the snow, bike and swim.

    I sure did not choose this way to live. OH, by the way at first I would read that it was in our heads. I went to a
    psychiatrist and worked and worked there and finally was told that I was okay, and nothing was found to be the cause of this crazy disease. As I said.......I tried everything to be cured of this.
    No one wants to live this way. Who knows, some miracle could happen anytime! Blessings.
  9. alaska3355

    alaska3355 New Member

    My mother-in-law is a very kind, thoughtful woman....who doesn't seem to believe in CFIDS. She thinks our son is not really "sick" and we should just get him out more. I love her a lot, but sometimes her comments show me how she doesn't understand. He (our son) has been looking for a job- part-time something to do until he starts school in Jan. (hopefully). Anyway, she thought maybe he could do seasonal post office work in the middle of the night. I said no, he couldn't, but she thought he could just "change his schedule." That tells me she doesn't understand that we're trying to keep him on the best schedule to get well, and a job like that would be disastrous. It's hard enough for a well person to change their circadian rhythms, but for someone with CFIDS, forget it!

    Our son was quite busy in high school before becoming ill- he was an excellent trumpet player, went to jazz band every day at 7:00 a.m. and stayed at school most days until 5:00. He got sick less than the rest of us. Then last fall, he got a bad bronchitis that wouldn't go away for a month. The bronchitis went away, and was immediately replaced by CFIDS. He missed so much school...I'd try to drive him there, but he'd be asleep in the car by the time we got there. So we finished his senior (yes, senior) year with home school and some college classes.

    He's better now than he was when CFIDS initially struck...he doesn't ever sleep in the day now- just 11 to 12 hours every night. He needs it. He is chemically sensitive to MSG and nutrasweet especially- they make him very nauseous. He is on a lot of supplements and a low sugar, low fat diet. He has lost some interest in food, thus he's lost 28 lbs. He doesn't need to lose any more!! We're hoping that he'll be able to start school in Jan., so we'll be looking at a non-stressful schedule....hope we can do it! Take care, Terri