I have CFS, not Fibro, and have recently been laid off from work where I was teleworking. I'm trying to find another job in the Database Development field, but even though it's a job that lends itself well to teleworking, employers and agencies are clearly reluctant to even consider the possibility.
My concern is what happens when I get to the end of my Employment Insurance...disability is a pittance, and I may have difficulty convincing anybody that I require disability since I've been actively searching for work.
I am on disability for a several medical reasons. I do work 9 hrs. a week for 1/4 of the pay I was receiving before becoming disabled. There is no way that I could ever attempt to hold a full-time job again. I can no longer tolerate bright lights, stress/anxiety and I get sensory overload quickly when too many things are going on at one time. What I am able to do now doesn't require any more thought than giving change (which is shown on the cash register) and sometimes I mess that up, lol.
Hi I have fibro and I am a part time hairdresser.I also have spinal stonosis in my 6 neck vertabre. Most mornings it's a roll out of bed.Back cramping and tight,feet feel like walking on bones,10lbs. sitting on my shoulder,Calves acheing,numbiness in multiple of areas.These are decent days,the ones that Get me are the ones I wake up with a fever or a cold rainy day.UGH
Oh I can so relate to what you mean about rolling out of bed, lol. I have to get up very early so that I can have time to stretch out a bit and get my fog to lift. It takes me twice as long do get ready than it use to. Those rainy days are horrible because it makes me ache worse too.
I used to be a carer in the community now i have carers in to look after how ironic!!
I had a bad car accident in 2006 nov and then started getting sick in jan 2007 i worked untill may 2007 when i came down with all over body spsams and what felt like the worst flu in the world!! aand i've not recovered since, i went for all the test and got dx in jan 2008 i used to drive and still go church but and cook and look after my children 3 of them young ones but now i can barly walk and am on serve disabilty, i have to use a wheelchair when out and sticks indoors and some days i dont get out of bed because of the flares are so bad!!
I also have MPS myofascial pain syndrome and degenitive disk disease in C2 L4/5 and S1 narrawing the spinal cloum but not enough to warrant surgery so they say!!
But i cant under why i cant get back to at least how i was when i was driving and didnt
need help or spend dys in bed in agonising pain!!
Why is it that some people with fibro can work and some cant!! I guess being a disorder of the CNS its like MS it effects people in differnet ways and at different rates.
I am going on a input course soon residential at a hospital to help sort my medication and get me more mobile.
I have both. CFS and Fibro. I think I developed Fibro first and then CFS had it's original onset about a month later. I had to nag and badger my doctor to actually get a CFS diagnoses. I printed over 500 pages of information on CFS from different sites on the net (including MedHelp), and armed with that I managed to convince him to run the appropriate tests they run.
And I was finally diagnosed officially on May 14, last year.
I do work full time, and my line of work is very physical sometimes. But, when I'm having a really rough day I'll do less of the physical work and more of the technical work, since I'm good with computers.
I have a degree in computer programming from UCLA... but... in the world of computers a 12 year old degree ain't sayin' much !
RobinHood - I understand what you mean about thinking of disability while you are still trying to find work. It's fearful to not know if you can meet your bills and feel that you have to force yourself to work. If you have a clear dx of CFS from a doc., then you may want to file for Soc. Sec. In order to do this, one would have to be out of work for 5 mos. and have a disability that is expected to last a year or more. If you are approved, you can also work at the same time but there are limitations on how much you can earn and still receive Soc. Sec. I wish you the best of luck.
uk2 - Hon I feel for you. I was wheelchair bound for two years and even now can't go out where it would require me to walk anywhere. It stinks because it isolates one so much and I pretty much just stay at home also (I had my injury in 06 too). Fibro is like MS when comparing the flare-ups. Some get them much worse than others. I hope you are in some type of rehab. program and working on your strength and muscles. I'm praying that you are just having a severe flare and that you will be up and about by the new year. I'm thinking of you.
twix - I had probs. also with what medication to take. I brought two seperate pill holders...one for the a.m. and one for p.m. I sit down each week and put all my medications in the daily slots so that they are already there when I need them. This has helped me a lot. It's very important that, even though you feel active, you get good rest at night and learn to pace yourself. Please keep hope and have faith that you will get better and you'll learn to adjust your day to day tasks so that you don't feel worse the next day. Take care and stay safe.
Ahhhh thank you for bringing that to my attention, lol. I should have checked that first. Yes, i've heard much about the way Canada handles their disabled and also that it's difficult to get certain types of physicians that you need and medications.
Still full time if you don't count the 600 hours of vacation and sick time used this year. Trying to get the energy together to complete my disability retirement from civil service done. Can't go on doing 40+/week at this job. With the disability I can work part time and rest as needed on the all too often sucko days.
I have fibromyalgia and despite feeling so tired it makes me throw up, and pain like i cant even describe, i literally MAKE myself go to work as i enjoy my job. if i sat at home all day i would get depressed and stressed about money and that would make my illness worse. I just chose a suitable job. Im a receptionist in a psychiatric hospital. it keeps me busy and occupied but i dont have to walk around or lift things. its a struggle i admit, but it can be done with the right frame of mind. xxx
I wish I had the energy to make myself go out to a job every day. I've been seeing doctors and getting tests and so forth at the rate of about one/week for the last month or two, and I'm EXHAUSTED. The rest of the time, I stay home and rest with the exception of occasionally taking the dog for a 15 min walk or getting things at the corner store 5 minutes away.
I dont have the energy to go to work every day, I just do it anyway. Sometimes I come home in floods of tears cuz im so tired, and I am so tired at work I get easily stressed out and frustrated with people. I could quite easily give up and stay at home all day, but i just prefer the battle. I cant stand staying in all day. It depresses me and I get very low and bored OUT OF MY MIND. lol. I've been off work with it before, but I just chose to force myself now. For instance, this morning it took me 15 minutes to psych myself up to get dressed cuz my arms were that sore. But i did it. and thats just how I chose to cope with things.
I've got 4 kids... they're about all the "job" my body can afford to do right now. I've just applied for disability - praying that I can get some help. The thought of "forcing" myself to crawl out of bed to work somewhere where I'd have to fake-out co-workers, customers, my boss.... no freakin' way. I can barely keep up with trying to minimize my symptoms showing for my worried family.
I stopped working 2 years ago, i didnt know what was wrong until my doctor threw a print out at me and said sounds fm not that he has or will send me for any tests or to a specialist. my body just give up in the end and it was impossable to keep my 3 day a week job... i have since thought about retraining so i can go back to work am in collage and am supposed to be doing my maths and english but i cant even get up for these lessons, some days i have to go back to bed after i have seen my son of to school.. its a nightmare but i have keept going to my art lessons as its somethink i love but latley i have found my arms feeling lifless and my brian cant do what as always come natural to me. am more than peed off as am supposed to be finding volentry employment so i can get on a access course in sept but am wondering how on earth will that work out and so am beging to thingk am kidding myself here. i cant cope with the thought of never being able to earn a decent wage or have a morgage and so i dont know where to go from here..i have qualified for DLA, its helping a bit,better than nothink i suppose..has anybody rertained, gone to collage/ unni?
Over here you can work up to 20 hours a week and still get disability,but nobody wants anyone with ailments.Every job that i have had i never mention fibro,otherwise there would never had been any jobs!
I was working at the same job for 18 years. This flare started in Oct. 07 & hasn't let up. I was to the point that I could barely walk, hurt to sit for to long, couldn't stand in one place because of the pain. I couldn't think straight, couldn't concentrate etc. The doc put me off of work in Feb. 08. I figured working for the past 18 years I would be so bored at home but I'm not. I can only clean one room a day at my place & some days that is to much to do. I really have to pace myself or I pay for it for the next few days. When I was working I was averaging about 3-4 hours sleep a night which is draining in it's self. He has me on amitryptoline 200mg to help me sleep, some nights it works & some nights it doesn't. There is no way I could go back to work right now. I just over do it one day by doing something extra & I am down for the next couple of days. So right now work is out of the question. I live in Canada, I am lucky that I had coverage at my work & my doc's have helped me alot as far as filling out forms for me. It costs alot to get them to fill them out but they do it. I have applied for CPP disability but have yet to hear from them yet. It has been 6 months but my specialist just sent in his forms last week, so I should be hearing from them soon. I have to go as my fingers are starting to ache.
I have been Dx'd with FMS/CRS back about 1.5 yrs ago. Since then I have been on that drug they advertise on tv but it caused too many problems for me so now I am on Neurontin 400 mg 3x's a day (but I take it twice to make it stretch due to funds), Trammadol, and Vicadin to control the pain. I use a generic of Resteril to help me sleep, and also use carb/levo for my RLS.
I held down a job doing housekeeping in a nursing home and it took all that to help me to be able to do my job and I still had pain.
I finally got out of there but now I work two part-time jobs and they are less physical but one is still very stressful. Right now the season closed for one job so I am in the process of finding another job for the winter season. Then in Spring I go back to my seasonal job and hope I can find a job here with INSURANCE as I haven't had any for four years now and that *****. I am so afraid to get sick or hurt if you know what I mean???
I've applied for SSD, I have SLE(lupus) Fibromyalgia, but more I think it is CFS, Osteoarthritis, DDD, Raynaud's, Phenomenon,HBP. So far it's taken over 2 years to get a hearing, but I should have one by Jan. Both my Doctors are behind me, but it turns out SS didn't have my updated files beyond 2006, which makes sense that I was denied the first 2 times because most of my diagnoses, besides SLE, has been since then. I've also got diagnosed with mild to moderate short term memory loss. the only work I have done is house cleaning, home health aid and the past10 years, before applying for SSD has been landscaping maintenance. All physical, all very painful, so I hope I get approved soon; it will be nice to pay off our debts and save some money.
Fibro and CFS seem the same, the only real difference is sore throat and sore lymph nodes which I have. As for the tender points which makes up fibro, just about any place on my body is tender to touch. All this hurry up and wait is hard. Anyone else playing the waiting for a SSD hearing game?
I have been a teacher for 29 years but am currently on sabbatical for health reasons. My hats off to all of you who have fibro and children at home. I think it is very hard physically to take care of a house with kids living in it.
I’m trying very hard to continue to work. I’m finding it extremely hard to get up every morning and to pull an 8 hour shift is almost impossible. I’m also expected to travel which has been very difficult over the last year. I’m worried about what is going to happen. I’m a one income household. That is one of my biggest questions. Will it get to the point that I won’t be able to work? I spend the whole weekend in bed and by the end of the week I’m so exhausted that it’s hard to put a sentence together. They are starting to look at me funny at work. Not sure what I can do.
It is so nice not to feel alone. I had injured my knee about 10 years ago. After surgery I just felt like I had the flu. I was so sick and tired of being sick and tired. I was so relieved to finally get a dx. I always feel like a dork if the docs can't find anything wrong. I have alot of medical problems including Hep C and herniated discs with stenosis of the lower spine. My current problems are severe brain fog and confusion, neuropathy of the lower legs, groin and hip pain, migraines, depression, and bipolar. If you note the time I am doing this you will see it is early. Has been one of those nights I couldn't sleep. The most common drug to treat fib is antidepressants like nortriptline or elavil. I refuse to take any of the drugs from that group as the put weight on, if i gain to much wt i get depressed and back and legs hurt worse. The best thing I find is getting in a tub of hot water if I am achey or wrap up in a blanket. The warmth really seems to help. If i don't sleep it is bad the next day. I am off work at this time because of the hep c. I am a RN so really feel uncomfortable working in that capacity. I am afraid with the fog i will make a mistake. Know the neurologist gets to try and figure out if the most current issues of fog and numbness iss fib, hep C, complications from Hep C meds, or something else we might be missing. I get 2 MRI next week so hopefully they will find something. Sometimes I hate to drive any where because if the fog hits I get lost, forget where I was going etc. When I worked I had FML so I was covered when I had to miss work. I have no vac or sick left. My ins runs out in Feb so I need to make some decesions about disability. My main concern is medical. If I have to pay for my hubby and my ins is over a thousand dollars a month. I will only get 1800 in disability. Hubby is retired and get even less then that from ss. This is a good lesson for me to be thankful, have faith and know God will take care of me. I hope everyone has at least one good day this week and does one nice thing for themselfs. I have also learned a couple of things that helps with this Fib stuff.
1. I will double recipes, freeze half so when not doing well I can just zap it.
2. I make a list of what I need to do. I have even syarted to make chore charts to help me remember what i need to do. I make actually a couple of different lists. I will list my daily cjores by priority. I also have a 10 to 15 min list of extra jobs I need to do such as clean the medicine cabinet. I don't put these on my daily lists as they are for me to do if I have a good day. I also male a list of longer more indepth jobs such as cleaning the frig or freezer. I put this list where hubby can refer to it and do some of them when he gets bored.
3. When I make my list for the day I also divide the chores into light or heavy jobs. Example: changing sheets is a heavy job as I can't even do it by myself unless I want to take a long time. A light job is folding the laundry. I can sitdown and not feel overwhelmed or over tired.
4. I have a notebook by my computer and phone. I write down who I have spoke to or e-mailed, the date, time, etc. This helps me keep track of who I have called and save me embrassment when someone will say, "julia we just talked about it last week." My response when that happened was I guess that is why I am not woking..what else could I say.
5. I keep a journal of my situation. Not everyday and not a real in depth one. I document if I got lost. I try to document my pain level and steps I utilized to help. I do this one not only for my benefit but it helps when I go to see the docs to have doc of the freq and servitiy of what is going on.
I am sure some of you guys may already do these things but my thought was if I can help just one person I didn't do this in vain. In closing I will suggest we keep the holidays as simple as we can. Stress and lack of sleep can send us into bad days. julia
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