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Vickster29

New member
Joined
Mar 7, 2016
Messages
1
Reason
DX FIBRO
Diagnosis
02/2016
Country
UK
State
Lancashire
Hi to all
Very recently diagnosed with fibromyalgia and temporomandibular disorder, luckily got a quick and prompt diagnosis and started on treatment. Currently taking gabapentin, which am coping with but coming to terms with this illness is extremely difficult. My mood is extremely low to the point I don't want to carry on, but with a fantastic husband and support from friends I will hopefully get through. The thing that concerns me the most is my career. I am a dementia specialist nurse unit manager and work full time, long shifts of 12 hours plus. I really want to carry on working as I love my job and have worked so hard to get to where I am. Is there adjustments that the company would have to make to accommodate me-shorter shifts, etc?? I feel really guilty at being off sick at the moment but fatigue, pain and depression are preventing me from being there, I actually cAlled into work with my sick note and a few of my colleagues hinted that I didn't look ill and there's nothing really wrong with me, that really upset me. Also I have 2 kids, 25 & 20 who don't seem to get the illness despite me trying to educate them. Will things get easier??
Thanks x
 
Welcome Vickster29.....Things will get easier. I have learned that what I thought isn't necessarily true as far as what I could or couldn't do as a career. I didn't think I could NOT work. I had a great career, but I got to the point that I couldn't work full-time. I was a manager and the major breadwinner of the family. I also have a now 27 year old that couldn't deal with my illness. Denied it and blew almost two years ago. We are just starting to work at healing that. My counselor believes it is denial and immaturity. Long story short....I no longer work. I am on disability with a meager income. We don't notice the difference in what we do financially. We have managed to adjust somehow. I'm happy. I still struggle. A lot! But, I'm happy. I still have a 14 year old at home. I am no longer a shell of who I was and after about a year and a half of not working, I feel like I'm finally getting a little bit of a groove. I am lucky. I have an amazing husband, who has stepped up and is my biggest supporter. Hang in there....Things will work out.... Hugs
 
Hi Vickster!
One of the reasons I joined was to find other fibro folks who work fulltime. I know your job is tough. I work fulltime in a locked psychiatric facility with severely mentally ill/addicted and am on my feet practically running 8 hours a day. I'm direct care staff. When I'm not flaring, I can cope with it. When flaring, I'm miserable all shift but like you said, I look fine so no one really gets it. The high stress and high pace make it tough although like you I love my job. Two days off isn't enough though! Looking forward to getting to know you better!
LeAnn
 
Hello Vickster, good to meet you.

I also work and am the main breadwinner for my family. I am really sensitive to stress and overdoing it. Pacing is very important - If I can control the pace at work I can make it through the work week. Sometimes that just isn't possible because the problems are coming fast and furious. At those times I take care of as much as I can, then I use FMLA to cover the crash, which usually lasts one to two days. I have a lot of good support at home, which makes a big difference.

As far as getting your kids to understand, that can be tough. We used to have a fellow on here (cmetryme) who suggested having family members wear clothes pins for an hour or so to get a feel for what fibromyalgia is like. I've had luck with the stubbed toe analogy. I explain that the reason the pain from a stubbed toe drops off so quickly is that a biological mechanism in the spinal column dampens the signals from the nerves. In people with fibromyalgia that mechanism is broken and acts like an amplifier instead. Most people can relate to a stubbed toe :)

Anyway good luck and welcome!
 
Hi vickster from the west country :)
I have worked through all of this too, also in the care sector..support worker.
No longer able to do that now, i am cooking in a care home for dementia which i absaloutely love.. tho of course is sometimes hard during a flair.
I am very blessed to have a brilliant manager so i dont have to stress at all.(hasnt always been that way lol)
Im sure there must be some kind of rights or policies regarding people who have chronic conditions who work?I think its so important to make sure people like us can stay in work and are supported while we do.
I would probably lose a grip entirely if i was unable to keep a job due to this..it takes enough away as it is!
I hope you manage to find a solution, im sure there is one :) x
 
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Vicks i posted a link to workers rights, it has to be approved first before it,l show up.As for people not understanding, maybe you could ask your gp to print off some info about fibro for you to hand out to people..Saves you having to explain yourself... Bit of a faff i know, lol but might help?
 
All u brainy ppl make me feel stupid grins.but really it just goes to show don't matter what u do or who u are Fibro don't give a toss.
Rich poor great job or mother nothing matter.i do feel for you ppl who have worked hard to get up the work ladder and have it taken away.
First off tell the ppl at work what's wrong. Next tell them so called workmates what you have and how hurtful they have been.
U might wanna think about maybe going part time for a while. You have rights you cannot be sacked ,sure they might moan at you a lot but you will not be sacked .
If u are in a union u can ask a member to be with you at any work meetings ,they will help u with your rights .
 
I believe the employer has a duty to explore all adjustments that can be made both in terms of reducing hours or job content as far as can reasonably be expected to enable you to continue working.

Perhaps you could open discussion with your employer to make your job more achievable without putting so much pressure on your health or to reduce your hours. I wish you lots of luck.
 
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