Totally Fed Up!

Discussion in 'Fibromyalgia Main Forum' started by pam112361, Oct 31, 2005.

  1. pam112361

    pam112361 New Member

    I read posts nearly every day (except weekends) and I've replied to a few, but this is my first actual posting; most would call this a vent!

    I feel like I've had fibro for probably 20 years but only 1 year diagnosed. I've had a cervical fusion, surgery for ulnar neuropathy, and a nasal septoplasty. Now I'm going to have additional sinus surgery (clean out the maxilliary, ethmoid and sphenoid sinuses). About the only good thing about it will be that I'll be out of work for about 2 weeks (that and hopefully no more sinus infections). It will probably be sometime around Christmas and I'm trying to plan it in conjunction with my vacation. The only problem is that this is during my daughter's Christmas break which will be the third time she has taken care of Mama after surgery. She doesn't mind and I hope there won't be much work to do since she'll also be helping her Daddy work, but I just feel guilty.

    Between the pain/fatigue, etc. from the fibro and feeling yucky from the sinus stuff, I'm bummed about things at work. I'm so totally depressed, that I'm not very personable right now which is not me. I've always been the "up" person; optimistic, everything will be OK. Right now, I simply do not care. Right now, I cant' do anything to please my husband (who normally tries to be very understanding) but I can't make him understand how I feel. When I tell him I don't feel sociable, he looks at me like I've completely lost it. Like I said, this is not my normal personality even when I'm sick.

    I hurt all of the time but I have to watch my meds so I don't run out too soon; there's a bone of contention between me and my doctor's office. He's very helpful, but the one thing I need the most is additional pain meds and he's not very lenient on that one. Because I hurt, I don't want anything to do with anyone and this isn't me. And I can't talk about it because no one really understands. I, for one, get sick of being sick and hearing myself say "I hurt" so I know my husband and others around me get tired of hearing it and I don't blame them.

    As far as my husband is concerned, how can I give him what he needs when I'm suppose to "want it too." I just don't!

    I'm trying to take into consideration that I am PMSing right now and am praying that all of the hostile, depressed, don't care if I live feelings will go away shortly.

    My biggest concern is the pain that I have on a continual basis and now the upcoming surgery. Is it going to start another round of a different type of pain? And if it does, what am I going to do? Who will I talk to: my rheumy, my PCP, or my ENT surgeon (who probably knows nothing about fibro)? I feel certain he'll give me pain meds after my surgery, but what if the pain continues and doesn't go away?

    I really need some answers and don't know who to ask. Do I schedule a "pain med talk" with my PCP before my visit with the ENT surgeon? Or do I explain the fibro to the surgeon and hope that he'll follow through with enough pain meds for me?

    And in the meantime, how can I get over a kick in the teeth at work when it is taking everything I have to come in to a job that I use to love? The job situation is a very long story and just part of the problem, but the stress adds to the pain problem.

    I work Monday-Friday. I get up at about 4-4:30, get ready, drive 1 hour into work, work from 7:15-4:00+, drive 1 hour home, and am suppose to feel like a million dollars when I get home. My husband's diagnosis is that I am a couch potato and if I would get up a do something, I'd feel better (not one of his better uplifting talks). My daughter is the only person who truly gets it, but since she's started college, things around the house have gone to pot. My husband works from home and is a pig. She and I manage to clean the house about every 2 weeks when it really needs something every day.

    My husband is a hard worker and a wonderful provider, but to tell me to get up off the couch just puts me through the roof. As I said earlier, I get up around 4-4:40 and leave about 6. From what I understand from my daughter, his days goes something like this: gets up about 7 (this is EARLY), combs hair and brushes teeth, goes to get his breakfast, comes home and eats and watches some TV, gets to work about 9 (shop is behind house), breaks for lunch from 12-1 and watches TV, works again from 1-3 (maybe 4 on a busy day). So by the time I get home at around 5-5:30, he doesn't really ask (very often) about supper (he's learned to make do). But then he can't imagine why I don't feel like going outside to do things. He's had what I would consider a 12-13 hour day (out of bed to into bed). I've spent that long just getting ready to go to work, working and coming home. I need some time to rest and not use my brain (or body for that matter) for a while and it's considered being a couch potato. This is the reason he goes to bed so many nights by himself.

    I apologize for the rambling vent. I just needed to spill to someone and I appreciate anyone who will listen.

    I just feel like I'm at the end of my rope and I'm ready to cut it loose.

    Pam
  2. maripat

    maripat New Member

    Go ahead and scream out loud on the computer,it feels good.

    So sorry life is giving you such a crappy deal.

    Come here and get it off your chest. It really helps

    just "putting it to paper" so to speak.

    Hoping and praying that you can make it through all your

    trials and troubles.

    maripat

  3. elizajane40

    elizajane40 New Member

    I've had the same feelings you are having right now. I thought they would never go away. 1st of all, about Pain Control....have you considered going to a pain clinic? They specialize in pain, they can help often when other doctors won't. Also go on the internet and do a search on "The spoon theory" Have your husband read it, it really helped my husband understand the limits of my energy.

    I hope these two tips will help....God Bless.
  4. Muddieanne

    Muddieanne New Member

    Tell ENT dr, you are right he probably doesn't know anything about fibro. Is it possible to delay or not have the surgery?

    A dr. told me once that we fibro people have a very,very difficult time recuperating from surgery. I am fortunate that I've never had any.

    About your husband I'm going to be blunt:tell him off once and then ignore his future comments. We teach people how to treat us. The more crap we take the more people give.

    I don't have a husband but I'm well qualified to comment. I have had 2 and now don't take crap from anyone--husbands, kids,friends,drs. or store clerks.

    You will find people treat you better AND YOU will feel better mentally.

    Marie
  5. pam112361

    pam112361 New Member

    Thanks to everyone for your responses. Unfortunately, I can't say that at this point I feel any better. I pray that it comes with time.

    Muddieanne: Not having the surgery isn't an option. I wish it were. I've been treated continuously since May with antibiotics, etc. (and that's just this round; it's been going on for nearly two years) and nothing seems to be helping. The biggest problem is the fact that the sinus closest to the middle of my head nearest my brain is the sinus that won't clear up completely and they can't leave it that way because it could begin to deteriorate the bone and possibly get infection into my brain (I'm not sure anyone would notice a difference!). So I have to have the surgery. I've not been afraid before when I had surgery because with those (cervical fusion and ulnar neuropathy) I was in so much pain I was willing to try anything. With this one, I'm hoping it stops the sinus infections; I just hope it doesn't start another new type of pain that won't go away.

    Pray for me because right now I really feel the need for it.

    Pam
  6. ldbgcoleman

    ldbgcoleman New Member

    Thats what we are here for. The only thing I can say to you is don't feel guilty. It is counterproductive and only hurts your piece of mind. If this were your mother you would probably happily help her. You are lucky to have a daughter who loves you so much and wants to take care of you.

    As for your husband if he is a good provider take some of his providing $$$ and hire someone to come in on the in between weeks to clean for you. Good Luck Lynn
  7. Yucca13

    Yucca13 Member

    Geez, it wore me out just reading your schedule and about all that you do. More-than-likely, if you are PMSing it is contributing. Couch potato, my pututi! I can imagine you must have to really push yourself to keep up. My first husband used to say I had "water on the brain" which is probably not far from the truth, but he was useless as a 'helpmate' with the kids and around the house.

    I know how yucky sinus stuff can make you feel. Sure hope this will be the last surgery you need and it works real well. I, too, have found very few people who have a clue about how chronic pain can affect us. I don't want to socialize when I feel awful either. It is hard to keep your public face on "happy" when at work, i would imagine.

    Sure hope you can find some adequate pain relief. Can you go to a pain doctor? Regular MDs have to be so mindful of the DEA breathing down their necks!!

    Maybe you can try to find time to do something good for yourself (a soak in a spa?, massage, etc.?) I give you lots of credit for all that you do.
    :)
    Val
  8. elastigirl

    elastigirl New Member

    ... your husbands remarks really get my goat. A "well" person working those hours with that kind of pressure usually comes home and collapses! Let alone someone with FM and chronic pain, sheesh. It sounds like he's not in a very compassionate stage.

    Interfacing with human beings, with all of their moods and foibles, is a far cry from working at home. Grumpy co-workers, rumors, bad projects, demanding bosses, traffic.... Well, it REALLY wears you out. Please don't buy into your husband's attitude right now. He just doesn't get it, but his opinion cannot define your worth.

    And you are worth doing what it takes to get well. I really can't offer any great advice, but I am thinking of you and wishing you well.
  9. dancingstar

    dancingstar New Member

    Pam,

    I don't even understand how you are keeping the kind of hours that you are currently, let alone wanting to go out and be social once you get home.

    Your husband probably does want to see people because he works at home all day. I work at home, and sometimes it is very isolating and lonely...but there isn't anything that you can do about it.

    You say that he is a very good provider. That is terrific. Is there any way that you can take some time off of work, not just for a vacation, but to just not work, maybe even permanently? I'd hardly call someone that works every single day of their life a couch potatoe, and frankly, neither would your husband, not really. He's just trying to get you to do stuff with him.

    Maybe you can tell him you would be much better company for him if you stayed home and were able to take care of your health and that you wouldn't be so tired if you weren't gone all day long. There truly has to be a better way than what you're doing now. It isn't working for you anymore, and one way or another, you're going to have to begin to plant seeds so that there can be some changes that you really want to make, whatever they may be.

    The pain meds thing is such a mess, isn't it? I would talk with your regular doctor and tell him the situation. Personally I still think he's the best bet for increasing the meds...unless you can find a doctor that you think might be better. Most doctors just don't understand fibro at all.
  10. ltaylor

    ltaylor New Member

    Sounds like to me that you need to alter your lifestyle. That work schedule is insane.

    I think if you would establish some sort of spiritual practice it would help you a lot. 10 minutes of meditation every day in the morning will ground you for the day. I am a 25 year old male who has had severe fibro for 4 years. I have been an over acheiver my whole life and would likely be working on Wall St. right now if it weren't for what has happened to me. I am gratefull though. This disease has a way teaching you what you are really supposed to enjoy and do in your life. Many times it is not what you thought.

    My #1 recommendation is to read the book,

    "Why people don't heal, and how they can"

    I was a person who always looked at exterior causes for why I was sick. There certainly are many of them. I am sure that you have many physical issues as well. I am just telling you that the #1 thing that has brought upon a shift in my symptoms and my quality of life has been the mental aspect of it. Fibro has a way of making you crazy, and the longer you have it the crazier you get. Many people subconsciously don't want to get well because they somehow become attached to their "wound". You have to truly believe that you will get well. Until you believe that nothing will happen. I feel for you much, and I sense that you are extremely powerful. You will overcome this, but your life will never be the same. Embrace who you can become.
  11. pirtpain

    pirtpain New Member

    As I read this it makes me want to reach inside and give you an enormous HUG. Boy can I understand what you are feeling. I am fortunate that my husband is alittle more understanding. This illness sucks and trying to get others to understand is part of the problem. This only leaves us with more stress that leads to more pain etc…First of all
    You need to educate the family and those at work who are closest to you. Go to the library, or better yet have your daughter go. There are some fantastic books that are geared towards family. I wish I could remember this particular one I bought for someone but it had a title saying something about teaching your family about your illness,

    something like that. It was a paperback and small, simple reading. Also there is a book called “ FIBROMYALGIA & CHRONIC MYOFASCIAL PAIN a Survival Manual – Second Edition. The authors are Devin Spartanly and Mary Ellen Copeland, who have fibromyalgia, which helps. This big book may scare you alittle as it did me, because it
    really shows you how bad this illness really is. Another thing you may want to do is to
    join the Fibromyalgia Network, which is a qrtly newsletter that keeps us informed as to recent research being done etc. Another important thing is that you have the best medical team. I can’t remember if you said that you have a rheumatologist or not but you should

    have one that you feel is understanding and willing to work with you in order to see that you have the proper pain meds and enough to hold you over between refills. I have found that sometimes you really have to become forceful with them in order to get them to see how much you need the meds etc. I use to take Darvocet & Neurontin for pain, but now
    take low doses of Oxicontin. But my dr. has been seeing me for along time & knows that
    I don’t abuse my meds. He also gives me a muscle relaxer at night called Zanaflex. Difficulty with stage 4 sleep is a big problem so a good sleep aid is Elavil. I know that you are really depressed which is normal with FM. I hope you are seeing a psychiatrist.

    for anti-depressants. I am sorry to hear that you have other health issues. Get any pain meds you can from your surgery doc. You’ll know what amt to take when the time comes to be as pain free as possible. Your FM pain may be worse than you’ll feel frm surgery.
    I am also sad to hear that your work is so stressful. Long hours of work & stress in my job are what triggered my fibro. Try to go off by yourself every 2 hrs or so, even if you have to go into the bathroom, close your eyes, and be calm for a few minutes. Maybe this will refresh you. When you get home frm wrk kiss everyone hello and tell them you are

    going to take a 20 minute rest, and do that. Maybe your hubby can start dinner or maybe simple dinners will suffice. I am sorry that this has turned into a book but I really wanted to feel like I could offer some good advice. Please let me know if this helps. I am also new to this so I’ll keep a look out for you!!

    GOOD LUCK!!!! PIRT ( BARBARA)
  12. pam112361

    pam112361 New Member

    To all who responded I want to say thanks! I can't say my attitude or pain has changed overnight but I have made the decision to make an appointment with my PCP to talk with him about my pain meds.

    As far as taking time off from work, my husband asks me repeatedly to just quit. And every time he does, I remind him that I supply our health insurance which is HUGE. My daughter is also in college and the university I work for pays 70% of her tuition. Since I live in Tennessee, we also have the HOPE Scholarship. Since she is currently living at home (may move to campus next year), my quitting work is not even something that we can talk about for at least the next 3 1/2 years. Then I have grad school to worry about.

    I wouldn't dare ask for flex hours or a shortened work week because with my workload, I have a hard time keeping up with what I have now.

    I appreciate everyone just listening and giving me ideas. I can only pray that things work out. If not ...

    Pam