What Would You Do?

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What Would You Do?

Postby fruitloop » Sun Apr 06, 2014 1:48 pm

Hi everyone,

I am very worried about the future and was hoping some of you may have some advice. I just don't know what to do for the best.

I was diagnosed in 2009 with CFS and have been told by a specialist that it is likely I also have Fibro. I work full time at a local council and am very lucky to have been successful in getting a few adjustments in place. I can start work at 11am, and am also able to work from home two days a week. I take full advantage of these every week, and more and more am having to phone up in the morning and ask to work from home at short notice.

So on paper, everything should be rosey - I work full time, have adjustments in place...apart from my sick record of course. I believe I am approaching 40 days off sick in the last 12 months.

I don't feel very rosey though. I feel like everyday is a struggle, and like I'm not really living, just surviving if that doesn't sound too dramatic! :roll:

I have been off sick for a week following a few weeks of stumbling towards this crash. I am so worried about going back on Monday (tomorrow) I just don't feel ready at all, and the stress is just making things worse.

Im 29, and have a small but lovely house with my long term boyfriend. I don't want to put everything at risk by being off sick so much, but I really don't feel I can cope much more. I am generally quite a positive person, people often say to me when Im at work that I look so happy all the time its hard to believe I am struggling with any medical stuff at all (and for once not meant as a slight!)

I have always been very career minded, but since 2009 things on that front have stood still, and I fear they are slipping backwards now.

Everytime managers talk to me about my sickness level or suggest reducing my hours etc, I end up in tears due to the feeling of shame that seem to well up and overtake me. I dont want to let anyone down.

I spoke to my GP about whether I should be considering reducing my hours, and she suggested that it would actually be a bad thing to do as it erode the baseline I have built up, and I would risk struggling to get back to full time.

What do I do? what do you do? those that do work, is my level of sickness very high compared to those in the same boat? I want to be fit enough to start a family in a few years, but that isn't going to happen if I cant even look after myself.

Any advice at all would be much appreciated, I am trying to take a pragmatic approach to this but am struggling to clarify my options. :-?
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Re: What Would You Do?

Postby Aldon40 » Sun Apr 06, 2014 2:13 pm

Hey I've been poorly for four years but was only diagnosed eighteen months ago with F.M I work full time in a healthcare setting in a prison. I am in constant pain and this flare up I have been off nine weeks and still not ready to go back. I am also awaiting an operation on my neck at kings, I am on so many painkillers and nothing helps. I've just had my blood results back and I've got problems with all of them being repeated tomorrow .I know exactly how you feel my work colleagues are the same oh you look okay. I say walk in my shoes for a day and see how it feels keep your chin up you never know they may find a cure.xxx
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Re: What Would You Do?

Postby jezebellow » Sun Apr 06, 2014 2:59 pm

I have had FM for over 20 years. In that time I have learned that FM is NOT a degenerative disease. I have learned what triggers my inflammation and fatigue and now lead a pretty normal life after being bedbound for the first three years. My main trigger is chemicals. I was diagnosed as being chemically sensitive. The estimate is that around 70% of FM people are chemically sensitive. Around 50% are in the caring profession. This is certainly true in my case as I came into lots of chemicals such as formaldehyde. Other working environments can be chemically laden as well. i.e. diesel fumes coming in through car air vents or warm plastic or things like toner cartridges in the work place. I suggest that you read up about MCS (multiple chemical sensitivity) and if it sounds like you, take steps to adjust your working/home environment to be as chemical free as possible. Through doing this in my own environment, my symptoms have improved tremendously. Its worth checking it out to see if you can achieve a vast improvement.
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Re: What Would You Do?

Postby DRM » Sun Apr 06, 2014 3:30 pm

Hiya, I'm in exactly the same position - burst into tears at personnel meeting last week & was so cross with myself! It's very frustrating as everyone I work with is lovely & understanding but that doesn't come into it with personnel. It is such a struggle to hold down a full time job, but I agree with your doctor& think if I quit life would go downhill very quickly. I feel I have to struggle on and hope things get better. Sometimes I feel like I'm choosing between work and a social life, but in reality I think if I stopped working I would have neither. All the best for the future. I hope things improve for you xxx
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Re: What Would You Do?

Postby FluppyPuffy » Sun Apr 06, 2014 4:29 pm

With this being a work~related topic, I've moved you over into here as it's a more suitable board, and things won't get lost in the other topics posted where it originally was :cow-wave: :cow-wave: :cow-wave:

It's been a long time since I was in a work environment, so I don't have any useful suggestions that you could see about implementing. It sounds like your Personnel/HR/Occy Health peoples are pretty decent. However good such peoples are tho, they don't always have the necessary experience in dealing with a condition such as FM, and may find it difficult to find other suitable ways to help you.

Don't panic at what I've just said as there are other organisations and people who can provide additional support and help in such circumstances. In JobCentrePluses there is a usually a Disability Employment Adviser who can help find potential solutions to matters that arise in the workplace. If they feel they may not be the best person to deal with an issue, there are other support organisations such as Access To Work who may be able to come up with a plan. If getting to see the DEA at a JCP isn't easy/possible then somewhere such as Citezen's Advice or other similar peoples in your area may be able to put you in contact with someone suitable.
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Re: What Would You Do?

Postby loverliesgal » Sun Apr 06, 2014 4:38 pm

After having 9 months off work in 2002, I took voluntary redundancy and left Royal Mail. It was the best decision I made, but 12 years on, I know I will never be likely to return to the work place full time, I work as a volunteer two days a week and that is just about the most I can give. The rest of the time, I keep my brain active doing on Open University degree, and I knit and crochet, the items I make go directly to charity or are auctioned off to raise funds for charity. I don't have any targets to meet, or deadlines, then I can't beat myself up for not doing something, if my work is voluntary, I don't feel guilt if I cant go in, but I always make sure they can cope with out me. So I do have a sense of responsibility to the places I work at. Its not a case of you go to a corner and curl up and suffer, you make the most of every day and you do as much as you can, just learn to accept that some days, and in many instances many days you will just have to take things easy, rest and take as much pain relief as you need. (thats another one of my bug bears, the doctors wanting me to be on strong pain killers all the time whereas I would prefer to feel the pain and adjust my pain relief accordingly)
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Re: What Would You Do?

Postby Tigerbalm » Sun Apr 06, 2014 5:49 pm

Hi there, I'm new on here and was drawn to respond as I can relate so well to your current struggle and dilemma. I was diagnosed with ME/CFS in 1993, Fibromyalgia in 2009, and P.O.T.S. 2012. I always prided myself on working full-time though it took superhuman crazy effort and I had some major crashes, had to leave 2 careers, retrain and be recycled after being vitually bedbound for a year each time. Those of us with these conditions are often conscientious, career-minded people who take a pride in giving our all. This is our strength and our downfall! For years, consultants, managers and others advised me to cut my hours but like you, I always felt 'stung' by these suggestions as if they were slighting my professionalism. I battled for years just surviving, curtailing everything just to manage at work. It can't be sustained long-term if you have the double-whammy of CFS and Fibro. Even if it could, it isn't living. And - I've found - the conditions will progress if you hammer away without adapting. After hitting the wall too many times I finally HAD to reduce hours, and can honestly tell you it was one of the best things I ever did. You think you won't manage the massive salary drop, or that it won't make much difference, but I wished I'd done it years ago.
The first step I took was to drop one day - Wednesday. This meant only ever having 2 'get-ups' in a row. It's like having a mid-week weekend! Knowing you only have to cope for one more day before you can regroup makes a difference to the working days too. This might be worth a try even on a temporary basis. In my workplace it came under the "Intelligent Working Policy".
Other things to consider: 1. Your sick leave should be being recorded separately if it is disability-related, rather than counted as regular sick leave. This is set out by the Disability Rights Commission. 2. Your Union might be able to help you negotiate getting some planned 'Disability Leave" (eg trying Wednesdays off) as part of your reasonable adjustments, or you might be able to negotiate this with your employer. If your GP wrote such a recommendation on a Fit Note for you, this would give you added support. 3. Does your workplace have an unpaid leave scheme? If so, this can be a step to try before reducing hours, or in addition. When we had it, I 'bought' the maximum 4 weeks' unpaid leave and by adding it to regular 28 days' annual leave, planned a whole year of 5 weeks' working, 1 week off.
Be straight with your GP. She might be hesitating re a reduction in hours because she sees your determination and wants to support your morale! Have a think about it. Be proactive in choosing whatever is going to be most life-giving for you. Life is short. Health and energy, time shared with loved ones are the most precious gifts we have. Let us know how you get on!
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Re: What Would You Do?

Postby robbiecramp » Sun Apr 06, 2014 7:55 pm

Do what you feel comfortable doing reducing your hours may not be a bad thing for the short term one thing I have learnt and yes I only been diagnosed since January but my mum had FM,MS, Periferral Vascular Disease Renal Failure but she always said her mobility which was down to FM & MS was better in the warmer weather yes it doesn't happen to everyone but maybe worth considering working from home in cold spell and maybe showing your face in office when you need to and working from home and going in office in warmer weather
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Re: What Would You Do?

Postby Paula200 » Sun Apr 06, 2014 9:30 pm


Don't loose heart you are doing really well, I understand the crying and not wanting to let any one down it is all part of fibro you are a strong person you just have a horrible illness, my boss know has hankies in his office I can't help it I cry a lot. I found part time work useful I also found having Friday off a real bonus as I keep going till Friday and then sleep because I now I have a day of it is my safety net. I have been diagnosed 15 years and am the proud mum of a beautiful 6 year old at the age of 45 (today) so don't give up hope it is ok just need some more back up than some new parents and the bond hubby had with her is worth every ache and pain I would love to feel normal but life is good don't give up u can do it xcccc
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Re: What Would You Do?

Postby carolad » Sun Apr 06, 2014 10:51 pm

I can relate so much to your predicament :( I recently made the decision to reduce my hours from 37 to 30 hours a week. I was finding that I had cut out everything else in my life just to enable me to work full time. So I went to work, came home and went to bed. At weekends, I was trying to do as little as possible to conserve my energy for work the following week. I used all my leave in days and half days when I just couldn't cope with working 5 days. So I was working full time...but I had no life.

I really began to think about my lack of work/life balance at the end of last year when someone at work was diagnosed with cancer....and died just a couple of months later. She wasn't much older than me and I just began to thing it is ridiculous putting all my energy into work...I enjoy my job but I don't want it to be the only thing in my life. And life really is short...you don't know when you are going to be taken away from this world so you really have to try and make the most of life.

So I saw the Occupational Health Doctor and he was supportive of my request to reduce my hours. He actually said something very interesting about how your work pattern has to be 'sustainable in the long term'. I knew if I had carried on working full time, I couldn't keep it up for ever....it most likely would have led to me being off sick at some stage. And both I and my employer want to avoid that. Reducing my hours to 30 should mean I can pace myself better which should allow me to continue to stay at work, and to work more effectively because I'll not be so exhausted.

I agree that giving up your job is not a good idea....but do look into the possibility of reducing your hours. It sounds like your employer is quite sympathetic so if you can get their agreement, you may find it makes all the difference and would allow you to stay in work, rather than having to go off sick again.

I know exactly what you mean about not wanting to let people down. I felt the same way...like I was 'giving in' by asking to reduce my hours, like I'd failed in some way. But that is a nonsense...the reality is I had struggled on for far too long and was finally recognising that I just couldn't keep going like that. It sounds to me like you have reached a similar stage...

Good luck with what you decide...x
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