# This is serious



## Debbielee (Jun 14, 2000)

I really dont know what to do. How am i suppose to WORK? Just when i think i have found a balance--whammm!I never know one day to the next how i will feel. This is getting bad. The new job i took at the hosp.--which is part time and pays more and i had hoped would help as i could manage financially at part time with this job---well im not even through with orientation and i get sent home today cause i was sick--of corse i have the flu on top of everything else!My home health job--well they are getting upset with me cause i just can not commit myself. So what does one do? I have to work--i mean my husband is not one that i can trust to take the ball for a while.I really feel i could use about a month of nothing right now. Wonder how i get that?If i keep this up--trying to work-- then calling in--work one day off the next etc... blah blah--i am going to ruin my very good (until now) work record.I already take care of my mom who is disabled by FM and my daughter and 3 grandkids just moved in for a short time---she cant work as she is almost due with number 4.Quite frankly--i am overwhelmed. I am also a bit hurt by all these people i work for and take care of as they seem to sense that good ole Deb wont be there for me so dump her?Sorry folks--i needed to get this out and i really need some feed back. Im getting scared now.thanks Debbie


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## Guest (Feb 5, 2001)

Hey Debbie, I say, from experience, that the first thing to learn is the word NO!! You have to take care of yourself. Sorry if this sounds harsh, but it is the truth in dealing with our illness. Scheduling yourself downtimes is very important. Non interrupted rest breaks. When I was still able to work, a co-worker let me use her office. She had a recliner and I would go in on breaks and shut the light off and rest. I was also known to nap in my car on lunch break. Worked for awhile. Does your husband understand what you are going through? Why do you feel you can't trust him? Making a schedule of when you will do household chores etc. is helpful too, it keeps you from doing to much at once.Hang in there!! DeeDee


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## Feisty (Aug 14, 2000)

Debbie,Hang in there!! DeeDee is right. You have got to start saying No. They are taking advantage of you, and the more you "bend" to their mode, the more they are going to expect you to. You have to stop trying to be Super Woman. Take care of Debbie for a change and too bad if the others have to do something for themselves. Are they expecting all this from you because you are a nurse? People tend to do that---"oh, she takes care of people everyday---that's her "nature", so she can take care of me, too! It's no big deal!!"Sorry, don't want to sound bossy, or sarcastic. But, it makes me mad to think you have all these people to take care of and noone is helping you when you need it the most.Perhaps it's time for hubbie to wake up and hear the birds sing!! If he doesn't realize and understand what you are coping with, then someone needs to tell him to grow-up, and welcome to the real world.Sorry, there I go again.Take care and "vent" whenever you need to. That's what we're here for.Karen


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## Debbielee (Jun 14, 2000)

You guys are right--i know i need to say no and i have been more than ever before.If i keep saying no to my job--i wont have one. There in lays my problem. I need income.my husband to answer your question DD is an alchoholic (dry at the time) but not willing to part with his extra money to releive me a bit. I have already told him if he wont support me in this he could leave.He says he understands but he doesnt.I know you guys are right---i have to take care of me cause i am sooo burnt out on taking care of others its not funny.but the stress of no income of my own is a problem. DD you dont have to work anymore?Unfortunatly--in my job--i cant take any power naps.Thanks guys--really thankyou--any more insights--feel free --i need them--Debbie


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## Guest (Feb 6, 2001)

It's not that I don't have to work, Debbie, it's that my CFS got so severe. I haven't worked since 1994. I'm on disability. You are in a partnership, Debbie, your husband should be responsible and help take care of things. I'm sorry to hear that he won't. That throws a whole new ax in the fire.







I'd rather have my situation, scraping to live and dealing with a disability, on my own, than dealing with a partner who won't help out. A HUGE hug for you







DeeDee


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## BOGGS (Apr 1, 2000)

Hi Debbie, Hang in there I know how you feel . Some times I think I am the only person in the whole world that has fibro . I am supporting a family of five and I am the boss of my company . I get phone calls all night after I get home . Take time for yourself everyday . We all are fighting to have a normal life . I just wanted to reply to your topic and let you know we all here for you . God Bless and Take care. Pat


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## mamamia (Jan 21, 2000)

Deb,This is going to sound extreme, I know. You know that I was also married to an alcoholic. When we split he was dry, too.However, the personality traits are still there.I think I could have made my life and my children's lives a lot easier, if I had called his bluff. I was the main breadwinner for a time also, mother and father to my kids and to HIM!!!HERE GOES: QUIT YOUR JOB OR AT LEAST TAKE A MONTH'S LEAVE OF ABSENCE, but tell your husband you are too ill to work. period. If he picks up the ball, great, if not, you are no worse off than you are now. I am sick with Fibro and IBS-D from twenty years of unrelenting stress. No other cause, no lyme disease, no other unusual life trauma, just 20 years of living first with a non-supportive husband and then raising two wild kids alone while working 2 jobs!! The body is like any other machine. You abuse it and it breaks down. I am trying desperately to heal myself now, as we all are or we wouldn't be on this board. You will not get better, sweetie, unless you do something NOW!!Please don't be mad at me for suggesting you take this extreme tactic. Get food stamps, do whatever you have to do. You are ill, let somebody take care of you. Is your daughter's husband around? Maybe he can help. See if you can use your Family Leave of Absence at work. Stop the insanity!!!!love you much, we are all here for you! love to all, mama-


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## NickT (Oct 3, 2000)

Wow, Debbie that all sounds terrible. I don't know what to say.Are you sure a hospital setting is the best place for you to work? To me it would seem like a very depressing place to be. Any chance for a change in career?Cherish what few good days you have, and try to think of them on the bad days. Think about how many people whose lives you have touched, and helped out along the way. Where would they be, if you hadn't stopped to lend a hand, or provided a shoulder for them to cry on when they needed it.Being a nice person is truly a curse sometimes, but how awful a place the world would be if it weren't for people like you at least trying to make a difference.What is that prayer from AA...Lord grant me the serenity to accept the things I can't change...I can't remember all of it, but it does seem like good advice.Take care - NickT


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## Debbielee (Jun 14, 2000)

You guys are great! Thanks for the responces.Mama--i am not angry at your advice--on the contrary--i think God just used you to confirm what i have been thinking about. Which is exactly what you have discribed. I am really thinking about taking a leave and letting the chips fall as they may. I feel i need a month to just get my bareings and save my up to now decent work record.Nik---i dont find my career depressing but you may be right about finding something else as in my line of work people become dependent on me and i do not feel i can live up to that commitment right now.Regardless of my husband--it is hard for me to give up my independence. But i am no good to anyone right now anyway.I see my rhuemy on the 19th and i want some answers from her--especially about the Lyme. If she blows me off--then i will go elsewhere.I thankyou Boggs for your kind words.Debbie


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## BOGGS (Apr 1, 2000)

Hi Debbie, I hope things will start looking up for you . Please rember that we are all here for you . This group has really helped me time and time again . I know it is very hard to come to terms that you need help . I have been there too . I still am there now . I am one of the lucky ones that have a very supportive family . I make my kids and wife mad at me sometimes . I always push my self to hard . I will keep you in my prayers hang in there . God Bless and Take Care . Pat


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## moldie (Sep 25, 1999)

Hi Debbielee, I certainly haven't had it as rough as you yet, but I know where you are coming from, in part. I had to quit nursing in '95 when my intestinal over-growth problem took over. It was just too much for me to handle. My abdomen, back and feet hurt so much at the end of the day. I gradually weened myself off, until the infection got the best of me. Because of the intestinal complication with frequent stooling, I was able to collect a closed period of disability until the stooling came under control. I haven't gone back to work yet because I have the luxery of a husband who earns a decent wage and my kids are older, and able to work (although neither are working now!). My mother also has Fibro, and my dad has Parkinsons, but fortunately they can still care for themselves. I know that I will eventually be called upon, being the only daughter and with nursing experience, so I don't want to go back to nursing and totally burn myself out. Right now I am still brushing up on my English, Math, and Computor skills at the Adult Learning Center through our local Technical College, and hope to find a more sedentary job or at least one with less lifting and standing/running around. Nursing is a very stressful profession. I didn't realize how much until I had time to take a step back and look at the situation. As an RN (I believe you said you were - I am an LPN), perhaps you could get a Quality Assurance, or Patient Advocate/Teaching type job. Maybe something in the school system or working for insurance companies might be an option. I am thinking of looking into doing something in the school system - even being a teacher's aide or something. Pay stinks, but it's something. Secretly, I am scared, and not sure how much I can tolerate, as my stamina isn't the greatest, but I know I will have to try soon. If I can't tolerate it, I can always go back and be screened at the Arthritis Rehabilitation Center to see if I qualify for disability again. If you quit, you might want to contact the DVR in your community to find out if you qualify for any of their programs. You could also check and see if Unemployment Insurance would cover you if you have to quit for health reasons/take a Leave of Abscence until you find out want you want to do. Take some time and try and find yourself, and hopefully other options for your daughter to take to help you out. You seem to have a lot on your plate right now, and something/someone has to give. Good luck to you Debbielee. Keep us posted.


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## NickT (Oct 3, 2000)

I just signed up for an evening class in Web Page design. This HTML stuff doesn't seem very hard to master.If you can work your computer, understand files/folders, basic Windows and a program like MS Word, you can probably work with MS Front Page (the automatic web page html writing program.)Visit the local mom and pop businesses, charge $200 bucks to get 'em on the web. Work at home, when ya want, anytime ya want.Why should dem high school kids get all da money !Later do pro bono stuff for things that really interest you. ie. Your experiences and tips for dealing with FM.Justa thought...


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## Guest (Feb 8, 2001)

Me AGAIN!!!







I was sick when I was going through my divorce, just didn't know why at the time. The divorce was final in February '94 and I was layed off from work (which had tons to do with my work record!) in June '94. There are alot of programs to help you out Debbie, if you end up needing them. I was able to collect unemployment while waiting for the disability to kick in as long as I actively looked for work. There wasn't a chance in h--- of anyone hiring me because Job Service said I had to let prospective employers know I had CFS. There is also quite a bit your employer has to do for you via the ADA. If you have to, that route can be taken. Anyway, this whole rambling mess is basically saying, there are always more doors to open and don't feel like it's hopeless.







DeeDee


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## Debbielee (Jun 14, 2000)

I dont know what i would do without you guys!This is truely a place of support and understanding and i am thankfull for you guys.Moldie--like you i am a LPN and had just finished some classes in Geriatric Mental Health. Took the job at the hosp. as provisional--working on the psych ward. Havnt even finished orientation yet. I am down to one client with home health. I am finished with home health--the driving---the lifting etc... is to much for me.I too have the bowel problems--not the same as yours but the IBS and Diverticulitus. Thats nothing compared to this FM and the Lyme--which ever came first!Nik---i would love something at home and on the computer and i have been thinking about that. I had taken classes at one time and i should go back. School as some of you mentioned is probally the answer. I have considered DVR.DD--What is ADA? You are right---other doors will open.I admit i get scared at not being in control --(im a bit of a control person--at least as far as me is concerned).I am probally my own worst enemy as my expectations for myself are as bad as those around me. Again thankyou all so very much. I need to here all this as you have all reminded me that there are options still left to me. Sometimes i panic and think there arnt any.God Bless you all.Debbie


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## weener (Aug 15, 2000)

Hi Debbielee:I really don't have much more to add to what has already been said. I agree that you must take time out now to take care of yourself and your family will have to chip in. Talk to your doctor and see if you can go on sick leave. This way it will give you some time to rest and think about what you want to do with your job. Hang in there. You are in my thoughts and prayers.


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## Guest (Feb 12, 2001)

Hi Debbie, ADA is American Disabilities Act, it protects those of us with disabilities that can still work. Weener, with her mention of sick leave, reminded me of the Family Leave Act. I used this one. It let me take some time off without having to worry about losing my job. My Doctor backed me up on it. Definitely worth checking out! DeeDee


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## Guest (Feb 13, 2001)

Debbie,I can certainly relate. I am currently working only half days after having been on Family Medical Leave (protects your job for 12 weeks per calendar year and can be used each calendar year) for almost 6 weeks. My first thought when the doc said you have to take some time off was "but I can't do that". I felt guilty because someone else would have to pick up my slack. I am very blessed that I have a super supportive husband who never pushes me to do more than I can and encourages me to take better care of myself. But you do have to do that or you won't have to worry about working - you won't be able to. I am totally convinced that if I hadn't taken time off I would have ended up in the hospital. I was that close to collapse. TAKE CARE OF YOURSELF. It's a huge adjustment. Even working part-time is difficult for me and I am currently in the process of beginning to apply for disability.


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## Debbielee (Jun 14, 2000)

Saundra--you are right. It is either do something now or like you said i wont be able to work anyway.Well everyone--i have done it. The new job at the hosp. is on hold and my home health job is down to 12 hours a week. One client that is more of a friend to me than a client. She is flexible and if i am down one day we can reschedule.I think the Home Health job would just as soon see me quit but until then i dont think they will do anything to me.I am trying not to worry about money and my husband will just have to pick up the slack.The responsibility scares him--he says. It has opened my eyes at how reversed our roles where and i told him how wrong that was. He agrees and says he will do it. We shall see.Regardless--as Saundra said--i really dont have a choice.I am back into my water excersise and have determined to get out everyday even when im not working--visit a friend etc...I want to avoid becoming housebound. I will take it slow and pace everything till i find this elusive "balance".Next Mon. is my long awaited Rhuemy appt. and i need her to put this on paper and to understand where i am at. Because retraining in another line of work is where i am probally headed.I hope to get from her more info on the Lyme cause i am not getting better as they hoped and i need to know if it is the Lyme and FM or just the FM.But mentally i am better and i thank you all for helping me put things into perspective.Debbie


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## Feisty (Aug 14, 2000)

Debbie,I AM SO PROUD OF YOU! You need this time to try and get a handle on things and hopefully it will all work out. Everyone needs to realize that if you don't take care of yourself, there won't be anything left of you to "give" to someone else and I don't think that that is what anyone wants.Take care of yourself. And keep in touch.The water therapy sounds like a wonderful thing to do to keep those muscles as flexible as you can.Sincerely,Karen


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## Guest (Feb 23, 2001)

Hey Debbie!! I've not been on for a bit, so sorry the GO GIRL!! is not timely. Doesn't it feel great to take some control back!!! Huge hugs for ya DeeDee


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## Debbielee (Jun 14, 2000)

Hi DDOh yes it feels good to have this wieght off.Plus the Doc gave me a months medical leave--so now it is official.I shall rest and rest and spend some time with me Debbie


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