I am having another flare up after pushing myself too much and doing 9.5h shift without a break. So today I had to call in and say I am staying in. Although my work does know about my fibro and chronic fatigue I have a feeling their patience with me is slowly running out.
I was wondering if anyone has any advice for what are good jobs for us sufferers. I tried doing a research online but haven't had much luck.
I am terrified I will lose my job and the anxiety kicks in as it is so hard to find any jobs nowadays plus I am a foreigner which does not help either.
I try so hard to go in and work hard. I probably don't have more than 1 day off a month or even that. Everybody including my parents think I am lazy, my partner kind of understands but it feels some days that he forgets how exhausting it can be for me.
Sorry for complaining so much I know it is so hard for all of us.
Hope you are having better morning than me!
Gentle hugs
Kami
Written by
Simmeke83
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17 Replies
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Hi Kami. I had my own business for nearly 10 years, until Fibro took a hold of my life and body. I tried so hard to carry on working, but I just had to stop. It was unbearable. My Fibro is really bad, plus I have upper and lower back/neck problems. I also have terrible insomnia, accompanied by chronic fatigue. I am now going through the long process of claiming ESA. I have not worked since January.
As far as working with Fibro, I guess it depends on the severity in each individual. Like you said, patience runs thin when you keep having time off. I suggest you monitor yourself and keep a diary of how you are feeling each day. You may be able to work from home? It really isn't easy is it? I had to accept that, at this moment in time, there is no way I am able to work at all. Hopefully one day I can though, and get my life back.
You have to judge what you are capable of. 9.5 hours, without a break is way too much anyway. Maybe ask if you can cut your hours? Be more flexible with days/times? There is always help out there if you need it. I'm sure some of the other members will be of some help too.
Hi Kami, it's a shame that your company can't understand about your health issues. They should bat least let you work part time or breaks in between but unfortunately there's a lot of company and jobs that like to take advantage of people health problem because they never went thru it or they just don't care. Keep your hopes high, stay strong, and good luck with positive energy.
Hey. Yes that is so true and although they agreed for me to do 4 days they think I got magically cured and they can use me how they want now. I am the only woman in the company and I drag bags that weigh 20kg cause the men sit on their phones. U cannot say anything either cause they will get rid of you and get funny with you as well. I just cannot be bothered sometimes cause it is causing me too much stress to even try to explain some obvious things.
Thank you so much for your reply I cannot imagine how it is to be forced to lose your own business due to illness, so sorry to hear that you had to do it.
I do have problems with insomnia , restless legs and back problems also even more due to medication I am taking.
I have to start a diary like you advise and see how often I have those I so called 'melt downs' and which part of my body is affected the most.
I have to thread carefully with any job as I am in the mortgage situation as well. I am thinking looking into cat sitting and dog walking.
My workplace is pretty strict with me although they do have a note from my gp saying what is wrong with me and I do 4days a week they do think that cause I am on medication I suddenly got better and got cured. I have lost my full time due to being ill last year and to punish my they gave me only 2 days out of 5.
Like I mentioned I try to work those 4 days and I only barely take one day off a month if I cannot get out of bed due to joint pai, migraine and nausea. I have to mention as well I travel to work 45min on the bus.
Will have to sit down and think hard how to approach all of this if things go bad.
I'm so sorry to hear that you're having anxiety about keeping your job in addition to the pain & discomfort of fibro and cfs. One question, if your employer knows about your health issues, why are you having to work 9.5 hours without a break? I think that would be difficult for a perfectly healthy person to do. Is your employer unwilling to try to help you so that you don't become exhausted and unable to function the next day?
Before I stopped working, I went thru the same thing, feeling frightened and trying to find a way to continue working that wouldn't kill me. The only jobs I could come up with were the kind that could be done at home, and most of those don't pay very well. I considered so many different at-home jobs (baking for restaurants, preparing income taxes, walking dogs), but even if the work is done at home, most still require a person to be reliable and be available and able to work at specified times, which isn't easy for someone with fibro and cfs.
The only things I could find that are a bit more flexible were house-sitting for people who are traveling, growing large quantities of vegetables and/or herbs for restaurants, becoming a novelist, or taking care of people's pets in my home. If you are artistic, you might be able to make things that you can sell online. Sorry I can't come up with something that would be more lucrative, but maybe one of those would provide enough to make ends meet if your partner is able to work full-time? I'm sure others here will offer many better suggestions, and I hope you will find something that works brilliantly for you!
To answer your question.Yes my employer does know about my issues but like I mentioned above in reply he kind of does not care much. They agreed for me to do 4 days a week but do not seem to get the fact that if it's busy I cannot make things happen faster than is possible in reality.Funny thing is that when I said yes to 4 days I did say to them I may struggle and have to have day off here and they agreed. Although when the sick day happens they all go funny with me.
I will have to think about more flexible job and ideally somewhere they treat me like a human being not a robot. My partner works full time but we have a mortgage so I have to keep up with my income. Unfortunately I am not brilliant at interviews I get really anxious and blank. This doesn't help me when looking for new job as I tend to find excuses not to go to them due to my problems:/
Don't apologise for complaining... I would feel like complaining if I worked a 9.5 hour shift... I can only manage to work 3hour shifts!
I am sure that working 9.5 hours without a break cannot be legal, I am sure you must be entitled to at least a lunch break.
If your employer knows about your fibromyalgia then you should speak to them about taking regular breaks. Another option is to ask about the possibility of working part time (if that is a financial option for you).
Do you have an occupational health service at work? Speak to them about taking breaks and any special adaptations that may make your job easier. Or ask at the Citizens Advice Bureau about the legality of taking breaks at work.
Unfortunately my company is very small and they do not care much about the legality of this and that all they do care about is you do your job on time otherwise u get told off
Start making a list of your physical abilities ,, e.g.. can you sit or stand for any length of time. How is my movement. Can I use my hands, and for how long,,,, do I have any problems with arms,,, shoulders,,, neck. How dose repetitive movement or lifting things effect them. Don't stop at upper limbs, remember you have a whole body to work through but at the end you will have a very useful list that wil be good for sorting things out in your mind. Often getting things sorted in the mind can be the most difficult bit. Remember to include Mind function, Breathing, Bowel Function. Leave enough room for you to alter the list as you will start to realise things may not be as you assume.
I would love a job as a mattress tester but I think I would get Fired in the first week for all the negative assessments!
Kami, Take your time doing those sheets,,, It is to assist you sort in things out in your mind without anyone else putting their subjective tuppence worth into the mix. You will change things,,,, thats the point,,, It is to get you to realise how you are now and come to terms with it,,,,, we get through each day and as long as we get whatever done then we can do it, but at what cost ,, we become blind to the difficulties we have. Sometimes I will look at something that is needing doing,,, something simple, like a bag of cloths needing to be binned and I will look at it like I am going to have to move a mountain so I go lie down,,, it is so easy to start thinking in a twisted way like you have become lazy as opposed to I am not able or because I am so uncomfortable or because I will suffer for it.
Remember nothing is written in stone.
The Mattress tester bit ,, my ribs get so sore that I find it very difficult to lie down,,, !!
Oh I see I understand now what u mean. That must be horrible Laying down is I think the only thing that feels good in my life. If I was a tester I think I would get sacked cause I'd just fall asleep for the next few hours lol.
Firstly, you are not complaining as it must be so difficult for you. It is normal to have at least a 29 minute break if you work more than 6 hours. Do have a look at the Gov.UK website under Breaks at work to make sure you are having the correct breaks. To be honest even if you were fit I think you would be shattered after working a none stop shift like that. I just don't understand how anyone in their right mind could think you were lazy.
I like many had to give up a job I adored just a year after my OH became ill with a mental breakdown and had to give in his job he had done for 38 years. I had struggled on but the body and mind were just not up to the task. I tried meds and treatment but the pain and exhaustion was just too much. Fortunately we had some savings to fall back on but it wasn't the end to our working lives that either of us had envisaged.
We don't know what yiur skills are so it is so difficult to help you as far as an alternative career path is concerned. I know quite a few forum members have started their own businesses as they can then work longer hours on their better days and shirt or no hours when they are worse. Good luck with everything and so let us know how you are doing.x
I think I would go with honesty being the best policy here and tell your employer that you have fibro and then ask for an ''Occupational Therapy Assessment'' at work. Otherwise you may not have much line for recourse if they get rid of you?
The ''Occupational Therapy'' Assessment could help work out what you are capable of doing / not doing and what reasonable changes work should make to accommodate you. I want to sincerely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
Hi Simmeke83 , I believe you should let your employer know about your fibromyalgia, they could help you out even give you shorter shifts or less duties or more breaks, another avenue is finding out about the organisation called well being at work anyone can ring them wherever you work even if you are self employed and they give really good advice and support about everything i.e. physical problem, mental health problems, they give you good tips on how to approach your employer to discuss your own needs and informing them correctly about your condition and what your legal right as an employee is, they even ring you if you want them too for counselling sessions, and help with support groups and referrals. Hope this helps and you are not alone. Much love x
good advice above. In the UK an employer is legally obliged to make suitable arrangements for someone who's ill. And to refer to Occ Health. This could be lighter duties, or shorter shifts. If its inconvenient for the employer that's tough. They MUST do it. However my experience is that there comes a point where the employer can no longer sustain the reduced output and may go for the "Medical retirement". I still managed to change jobs.
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