Trying to work & Cope

Discussion in 'Fibromyalgia Main Forum' started by erinmac, Jan 23, 2003.

  1. erinmac

    erinmac New Member

    Hi, This is the first time I'm using message boards but the isolation gets to me sometimes. I'm a medical social worker whose job it is to help other people cope with chronic illness. I'm a renal (dialysis) social worker and most times I think our patients cope better than I do. It's constant struggle to appear "normal" & not complain because who am I to complain! Our patients need dialysis 3-4 times a week just to survive and they do so well- I can work with other people around adjustment issues and know intellectually - but when it comes to me I often lose all perspective. I focus on what I can do vs. what I can't and am able to say all the right things to patients but I guess have these high, unrealistic expectations of myself. Enough already! but I was wondering if anyone out there is in a similar position???? Barbara in CT
  2. pam_d

    pam_d New Member

    Glad you are here! It was my husband who led me to this message board, & it has done me a world of good. I know exactly what you mean about the isolation, and that's what is so great about being here; everyone truly DOES understand what you're feeling & talking about. Plus I have learned a great deal about how to treat this illness from all the posts here.

    I am not in your position work-wise; I have been a stay-at-home Mom for 10 years, but now that my daughter's older, I am thinking of (gingerly) putting my foot back out into the working world, at least part-time---so I always am anxious to learn how others cope with this. It sounds like your job is stressful in that you are dealing with sick people all the time, yet very rewarding at the same time. It would be frustrating, I think, for any of us to "appear normal" in work situations, and I think moreso when you are dealing with patients who are seriously ill. I admire your ability to give patients your full attention as best you can------I know I can get lost sometimes in how distracting FM is! Makes it tough to concentrate fully, and I don't think you should feel at all guilty if sometimes that happens.

    I think it's difficult sometimes to know that what we have seems invisible; many people haven't even heard of it, or don't understand it, including many doctors, so it lacks "credibility" with the general public. Your patients have something everyone KNOWS is a serious illness. My husband has Type II diabetes & I sometimes feel envious of his situation; everyone understands diabetes, it's a "real" illness you can discuss; mine isn't that's frustrating, too.

    Anyway, I'm glad you found this board & I hope you come here often, you will find folks who really "get" it here. And there are a lot of working people in all lines of work here, so I know you'll get a lot of response to this post. I just wanted to welcome you!

    [This Message was Edited on 01/24/2003]
  3. pearls

    pearls New Member

    Hi, and welcome to our really great board! There are a number of us who work, and believe me, this is a subject that does come up! None of us has an easy time of it. I am constantly aware of my pain as well as my need for rest and taking care of myself, but I'm a 4th grade teacher. Need I say more?

    I hope this board will help you deal with working and coping. It has for me, though I still wonder from day-to-day if I'll make it thorugh the year.

    By the way, if you see one of the names of those of us who work, click on it. It will take you to a list of when we shared our problems on this board. Some of them will be about work and you'll be able to read right now what we've said already. That hardly means that everything that can be said has been said, though, so share your thoughts, concerns, and questions with us.

    Soft hugs,
  4. erinmac

    erinmac New Member

    To Holly & all those who replyed- It was so great to come in (Monday morning) & read all the wonderful responses. Intellectually I know I'm not alone but when it's a bad day -well you all know I'm sure. I thought I was the only person that had to lie down at work to get through the day!Thanks so much for sharing. Its incredible what the mind can do and that's what my focus has been - using congnitive therapy on myself. Coping is all in the mind although it's hard to reframe all the negative things we tell ourselves. Since I should be working I have to cut it short but wanted to say thanks! As I'm new can anyone tell me how or if I can respond to more than one person at once?
    I think this will become a daily habit! Thanks again!
  5. erinmac

    erinmac New Member

    Thanks!!! I was so glad when I checked this morning and found so many responses! Especially on a MOnday morning! As I should be working I can't spend too much time now. It's great to have contact with another social worker who knows! I will get back....... As I asked Holly - Is there a way to respond to everyone at onec just to say thanks?? Meant so much! Will be back...
  6. catgal

    catgal New Member

    Hello Barbara~~I'm so glad you found us as isolation with our illnesses can be a major stressor.

    I am 53 and have been a therapist for many years. I was born with severe asthma/allergies & IBS, have had FM/CFS for over 35 years, and osteo/psoriatic/rheumatoid arthritis since I was 30. I worked full time as Director of Mental Health with a good income and great benefits. Then in 1993, the pain and exhaustion with the FM/CFS & arthritis became too much for me, and I had to resign and take a part-time job working 3 days a week for much less money, a major change in lifestyle, and no benefits.

    I have been in my part-time job now for 10 years, and since I could never get any help with the FM/CFS I often found the pain and exhaustion very difficult to deal with especially since I am a therapist who sees one client after another all day long. Sitting in that chair all day and doing the best I could to help others, maintain a professional demeanor, a compassionate state of mind, and a warm smile on my face while feeling so worn out and in such pain has taken a major toll on me. Then two years ago, I was diagnosed with advanced degenerative disc disease {ddd} which caused me more pain and discomfort. However, it was because of the ddd that I was finally able to get on narcotic pain management after trying many other alternative therapies first. The pain meds also helped tremendously with the FM pain. Two weeks ago, I was diagnosed with nerve damage from the top of my neck, down my spine, through my legs, to my feet. And all of this combined has made working even three days a week very, very hard on me. Plus, I have no benefits, no health insurance, and in order to keep my position part-time--I have to cram 5 days work into 3. For if I can't keep up, then they will make the position full time, and I will be out of a job and bankrupt in 30 days.

    When I saw the Specialist two weeks ago, he told me that my condition was only going to get worse, that the ddd and nerve damage was advancing rapidly, that I was definitely going to have to have surgery down the line, and because all this was going to become very expensive--it was imperative that I get some health insurance somewhere. I left there feeling as low as a snail's belly--especially knowing that my poor part-time paycheck is already stretched to the max--and how I am going to find or pay for insurance is a mystery to me. Most insurance companies I have looked at are expensive and will not cover "existing illnesses" until a year has passed. I am at a loss as to what to do.

    However, as I am my sole financial support I must keep working. I live and work in a small village on an Indian Reservation where jobs are extremely difficult to find--much less part-time jobs.

    I do everything I know how to do to take care of myself, but all my medical problems are becoming overwhelming to me along with the monthly medical expenses. The Director of our Program is very unsympathic to people with chronic illnesses and would love to find a legitimate reason to get rid of me.

    By the second day of work, I am dragging myself out of bed and forcing myself to go to work and continue to be the best therapist I know how to be. I have a large clientele with several people on a waiting list. And it is all taking an enormous toll on my health and emotional well being. There are days I spend my lunch time crying behind a closed door, then go wash up, put on a smile, strengthen my resolve, and see one client after another for the rest of the afternoon.

    I can't afford to quit work to file for disability and there is no way I can support myself while I wait--maybe years--to see "if" I get approved or not.

    I love my work, have spent a lifetime honing my skills as a therapist, and helping others has put meaning, purpose, and direction in my life. But, I just don't know how much longer I can hold on.

    As you so well put it--it is much easier to help others with what to do than it is to help ourselves. So much energy goes out to others--with few resources to replish myself even though I do everything I know how to do for myself.

    I hope you can find a good balance between caring for others and caring for yourself. Best Wishes, Carol...