Do you get tired of.......

Discussion in 'Fibromyalgia Main Forum' started by Braidenstone, Feb 27, 2003.

  1. Braidenstone

    Braidenstone New Member

    Hello,

    I guess I need some friends who understand this fatigue and pain right now.
    My family and co-workers act as if I'm a nut, or hypochondriac half the time.

    I am so depressed lately, that I dont even really talk about it to anyone. I have been in so much more pain than usual, after a stressful move, a stressful job, and major life changes. I feel very alone lately......and angry that I feel the need to hold in my "whining". I just want to scream sometimes.....(This, to my co-workers)
    "I HURT! Dont you get it? I dont like to be on my feet for 10 hour shifts when I have so much pain in my hips and legs! Why dont you pull your share instead of sitting around doing paperwork while I do the physical work! I dont choose to work more than 30 hours a week because I CANT! I am NOT lazy, I HURT and have NO energy! And DONT ask me to come in any more than my 3 10 hour shifts!"

    To my grown kids, I would say........
    "No I dont want to do anything extra after I get off work, because it takes me 2 days to recuperate from the 3 days I do work! Please dont get mad at me for not feeling good."

    I am tired of feeling like I have to "defend" my health condition. Like they think it is not real! What do some of you do when in these situations? How do you keep yourself from feeling guilty, or lazy, or questioning yourselves?

    This stuff has kicked me hard in the last year......Not on pain meds, just Ibuprophen. It dosnt take away the pain anymore, and thins my blood too much. I wake at night crying. I have no insurance, so I go to the county hospital for care. I never see the same person more than twice.
    I need to start getting this documented....

    I was diagnosed in 1996 with Fibromyalgia, and in 1994 with Chronic Fatigue Syndrome after my doctor found a high Epstein Barr Titer. I had been exposed to Mono at work, I guess.

    Sorry to keep babbling! Needed to vent, and see some other people like me. Thanks for listening...

    Braidenstone
  2. camelgirl

    camelgirl New Member

    i am still undiagnosed, but in the process of going through tests...i'm sure i have cfs, but not 100% about the fm...i've been experiencing more pain lately, but mostly i just have the other millions of symptoms that we all go through, so i don't know how empathetic i can be in regards to your pain, but i'm here for moral support any time you need to vent...as far as other people: s***w 'em(IMHO)...you need to take care of you, and unfortunately you really need your energy to do that...don't use it trying to make others understand you 'cuz they won't...i've found that there really aren't very many compassionate people out there when it comes down to it...so come here where we DO understand and stop stressing over what other people think, ok?
    peace,hugs,god bless, camelgirl
  3. JP

    JP New Member

    Sometimes venting helps a great deal. It is very challenging at times to be in a work place, feeling bad and trying to deal with your peers at the same time. I don't share my experience much with friends and family and I am learning to just say no when I need too. This is not always possible in the work place. I wish I had some suggestions for you. I know that pain control helps me with my functioning. I am not able to work right now, even with pain control. I hope you find the way to get some additioal support.

    Take Care,
    Jan
  4. AnnetClo

    AnnetClo New Member

    I don't tell many people about how I feel either. I grew up with a dad who always told us "Quit your whining" so I learned early to keep things to myself. I get just like you do sometimes though and want to scream and throw a tantrum!

    I was diagnosed in Oct 2002 but didn't start getting treatment that has helped somewhat until about 2 months ago. My doc has me on Percocet, Skelaxin and Elavil for sleep. It doesn't take away all of the pain by any stretch, but it does take enough of the edge off that I don't want to run in front of a bus anymore! And even though I still want to lash out at insensitive people, I seem to be able to handle things a little better now. When I was in constant torturing pain all of the time, it was just hard to deal with anything else. I noticed you said you only took Ibuprophen for pain. Maybe if you found a doc who understood pain and could prescribe something stronger it might help. It's helped me so much.

    Sorry I can't help anymore. I worked as an RN in an ER for 18 years and I know first hand that Med assistants are the hardest working group in the hospital, so I can emphathize (sp) with you. Soft hugs and I pray you will have some pain free days soon

    Annette
  5. nct

    nct New Member

    I'm also sorry you're having such a bad time.
    Yesterday I replied to someone who was unhappy in her situation at home as well.

    I was feeling bad yesterday afternoon (I work full-time) and seemed to be having a mono relapse.
    No official CFS diagnosis, but its days like yesterday that sure make me suspect it.
    Anyway, I was home in bed when my boyfriend called. I told him I was feeling blue,
    because I was feeling bad, had had a bad week, a friend was in the hospital with
    a "cardiac event", and I was so tired yesterday I couldn't even go visit her.

    He made me laugh. I felt better, not as bummed. I told him how much I appreciate all
    the support he gives me, all the patience.
    He's wonderful, he seems surprised when I thank him for that. His reaction is "well of course
    I support you. I love you." :)
    He's driving to Columbus from Dayton today; even said if I was too tired to go out, he'd drop off
    dinner, spend a little time, then just drive on home, 3 hours south of Columbus.
    Isn't he fabulous?

    My wish for everyone is that they have someone in their lives as wonderful and supportive as he is to me!!!!!

    Nancy
  6. Katlover

    Katlover New Member

    Do we happen to work at the same place??! Your co-workers sound like my boss and co-workers! At least I have a 10 pound weight limit that is on file in my records. I stick to that. I get the smart remarks, looks, etc., but you know what? I don't care! My hubby does understand what I'm going through but some of my family members don't. I don't have any kids, but my sister thinks it's "all in my head" and that "I brought this on myself" (?). I know what you mean about having to defend your condition. I do that on a daily basis at work. If I talk about being tired and/or sore they just shake their heads and it makes me SO mad I could scream!! My boss is the worst. I'm waiting for a call from my pain management doctor right now. I'm going to get him to write a letter to her to explain my situation. I work for a technical college and last year in our quarterly magazine (put out by the state) there was a great article about a girl who had fibro but was attending full time classes and what she was going through. I got copies for my boss, the president (who I also work closely with) and a couple of co-workers who are "nonbelievers" and wrote a note stating that this is just like me. Would you believe that NO ONE even acknowledged it!?!?!?
    As for documentation - do it! Document everything. At work and medically. If someone here at work says something smart, I jot it down in a notebook I keep just for that kind of stuff. I don't know what I'll ever do with it, but I figure if fur starts to fly at least I'll have ammo!!!
    I'm sorry you are having such a hard time. Just know that there is another who is in the same boat. It helps to know that we aren't alone - huh?
    Take care - gentle hugs!
    Kat
  7. Braidenstone

    Braidenstone New Member

    Hi,
    Thanks to all who responded to my venting!

    It feels so good to know there are others like me who go through the same things, and I am not alone.

    Yesterday, at work, I got my evaluation. A very GOOD one! My boss is pretty understanding, and has read up on FM. She told me the only time anyone has a problem with me, is usually when I'm not feeling well, and I get grouchy. She told me that is not that often, and it was just an "acceptable" type of state that I get into sometimes! LOL! She accepts this condition as REAL.

    My mate is very supportive of me, but I know he feels helpless sometimes. I dont want to always be complaining about not feeling good. I just get tired of holding it in, I guess. I dont want to become a sour, grouchy old woman like some of my patients!

    Again, thanks for your support!

    Braidenstone
  8. starstella

    starstella New Member

    I'm fairly active despite my symptoms (only because I am taking meds to deal with my symptoms) but there are still times when i get so depressed with dealing with this. You are not alone.
    Since you have a supportive supervisor, can you establish an understanding that you need periods of time when you can sit in order to rest so that you can continue to do your job?
    Late/teen, early adult children naturally are self-centered and will need constant reminders about your need for assistance with some chores at home. It's hard to be persisant with reminding them that you need help and not fee like a whiner. Make your requests simple and direct. such as: washing the floor will really hurt me today because my back is so painful, could you do that for me? Let them decide the time. If they don't do it, let them know that their failure to do this has caused you physical pain. (I have 3 late teenagers at home with me, that's my technique) I also have to work on not taking offense if they don't offer to help. It dosen't mean that they don't love you.
    The biggest thing that will help your psyche is to get adequate sleep and pain control. You are treated at the county hospital----is this only for episodic care like sore throats, etc? You do have a documented history of having certain health problems. Why aren't these being addressed. Of course you wake up crying---ibuprophen alone is not enough to help you. Hasn't anyone at least tried you on an antidepressant to take at bedtime to help you sleep (something like amitryplyline? It's cheap, helps a lot of people with sleep problems, unfortunately puts on the pounds.) If for whatever reason this is not possible, there is always benadryl to help you sleep at night which will give you more stamina to make it through your days.
    In this current, piecemeal, managed care medical care climate, it's crucial that you be your own health advocate. This message board will help you a lot with gaining information.
    I hope I haven't sounded too preachy. I just really emphathize with your concerns and want to do something to help you get a better quality of life.