|
|
|
Rank: Member
Groups: Registered
Joined: 5/5/2011
Posts: 10
|
I desperately wanted some feedback regarding chronic fatigue & a working life with RA.
At 17 I discovered I had juvinille arthriris, but with the correct meds I have been able to still live life to its full, working & enjoying life.
Of course it's not been an easy ride and i have always suffered severly with chronic fatigue & lethargy. As I have moved up the ladder, with more pressurised jobs I have found things a struggle. I'm tired everyday, even when i have exercised or gone to bed early. I'm in a contant state of tiredness & work tasks take me longer than most, therefore I work longer hours - 10-11! The longer hours I do and the more stressful my job I find i am making mistakes, no matter how thorough I am. This has been an occuring theme the last 2-3 years and has threaten both my jobs.
I am ambitious and work in the fashion industry and have to monitor a critical path in excel for cloth and I have to be extrem;y accurate, I can't make any errors. I can cope with the pain, but the fatigue gets to me sooo much. I just wanted to know if anyone else suffers in this way & what I can do? I feel hopeless. I am an intelligent woman and at the age of 33 I feel like I may have no choice but to give up my career and do something less challenging because of this disease.
Am I on my own, or do others suffer from similar issues in their working life & is there hope & solutions? Please please help, I Feel so lost & helpless!
|
|
|
|
Rank: Member
Groups: Registered
Joined: 5/5/2011
Posts: 10
|
Can anyone help, I am desperate for advice?  xxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi, you ll have to let us know your name  I do feel for you, you are obviously passionate about your career and very talented. I think you have coped extremely well, especially as you are on your own and have to do every thing for your self. I wish I could give you the magic answer but possibly with such a demanding career that may not be possible, I expect you have gone down all the avenues at work with your colleagues possibly to help relieve the level of pressure you are under in your particular job, I would imagine your career path although very rewarding is very challenging too, far from easy for the most healthy one. Best wishes Julia x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Hello
I am so sorry that you are having such an awful struggle. You have done so well to get as far as you have and for as long as you have. Do not give up. It is the worst thing you can do.
From my own experience I have worked in an extremely pressurised full time job as an Admin Manager for the last 21 years. I was diagnosed 3 years ago. My life has had to completely change.
The company I work for have been brilliant and realised that I would not be able to continue in my job without some serious input from them. Therefore I now work from home two days a week. My company have installed a computer and all sorts of communication devices. Really it is no different than being in the office, but the big advantage is that I can get up later, can sit in my pyjamas all day if I wanted (but have not actually done that yet) and basically do not have to make an effort to get to work.
The other big change in my life is that I conserve all my energy for work. I no longer do housework, shopping or anything which is going to use up my strength. I luckily have a brilliant Husband who has taken over all this. I go to bed early during the week and make Saturday my "doing and going out" day and then completely rest on a Sunday. Do you work to the "traffic light system"? If you search on here you will find some posts about this where you look at a system to conserve the energy for what you really need to do.
To many people it may sound as if I have not got my work/life balance right but I am the only bread winner in my family and I love my job and do not want to give it up. I still get to have a life and feel completely fulfilled with my choice.
Yes I am still tired and I did go into work this morning and people thought I had been crying because my eyes were red raw. It has been an extremely busy week with work and I did have to go in one day when I should have worked from home but generally with reducing my time at work and changing my life style I can have a good quality of life.
If you look on the home page of NRAS there is a section called "Workwise" and I think it would be very helpful if you read this and then rang the helpline of NRAS. You could possibly have a work assessment where they can come in and see how you do your job and see if there is anything they can do to help and lessen the pressure which causes the fatigue.
You have obviously worked so long to get where you are. Please give this a go and you never know there may be some answers out there for you.
Take care
Jackie
xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
|
Hi I think Jackie's suggestion of ringing the nras helpline is a really good one. Could you speak to your rheummy nurse or occupational therapist for any ideas on how to cope? I don't work any more having taken ill health retirement frm my job as a nurse nine years ago one of the reasons being fatigue and not being able to keep up with the pace of work. Fatigue is one of the hardest things to cope with about ra I find.
Hope you find a solution soon.
Bevxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
|
Hi there,
I was diagnosed Nov 2010 and have gone through the wringer with my work over all this. My problem was that my work was very physical and potentially dangerous, one false move and I was in big trouble!
It sounds like you've got yourself into a bit of a vicious circle, getting stressed, working longer hours and doing less in that time, making mistakes, getting stressed etc? I'm afraid I was in a similar sort of circle and I know how difficult it is to break out of it. But it sounds like you could certainly do with some time out at the moment to stand back, have a good hard look at things and make a plan.
At first I thought I could heroically struggle on with some help from Access to Work with some really good kit to take some of the strain out of my job but it soon became apparent that I was achieving less in more time and it just wasn't worth the effort. It was taking me the same amount of time to half as much, I would have sacked me, problem was I was my own boss!
Now I have a cushy little desk job for 12 hours a week to help with the bills and have started another little venture with 4 other people who know exactly how unreliable I am! Less stress, something to keep the brain cells going and sort of manageable, although I'm always the sort of person to push the boundaries and misbehave a bit and suffer the consequences.
Its really hard I know but I'm sure you can find a way through this and maybe there's a way of staying with your chosen career but in a different way? I know nothing about fashion, being a charity shop girl myself, but I know that I have managed to forge a new career doing something I enjoy, but then I may just have been lucky.
I hope you can find the time and space and somebody to talk this through with to find a solution. There is a solution but sometimes its difficult to find. Good luck and let us know how you get on. Apologies for not replying sooner but when I first read your post it made me cry because it took me back to where I was last year. I hope you've found my experience helpful.
Sara
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hello I was very similar to you in many respects; ambitious and very career focussed, often working long hours outside my normal contract because I enjoyed what I did. I was a manager of a Legal Aid office, not everyone's 'cup of tea' I know, but I loved the work and the involvement with staff. It came to an abrupt end when I was diagnosed with severe RA. I had no say in the matter and was retired on ill health grounds at the age of 32 years. That's going back some 23 years and times and the workplace have changed. That said, and with hindsight, it was possibly one of the best things to happen to me. It certainly saved me the stress of trying to work and reach my own exacting high standards which I would have found very difficult to maintain. I have done many other things since then including qualifying as a counsellor, a role I would never previously have considered. It has given me the opportunity to work with the bereaved, the dying and young people in a variety of settings. I worked in a voluntary capacity for my children's schools PTA organisations and sat on a number of committees. I now coordinate the Blackpool NRAS group. All challenging areas in their own way and each has thrown me a lifeline that has helped me through difficult times and provided links to the 'real' world. Only you know what is right for you and how having RA might affect you long term. Certainly speaking to someone on the NRAS helpline would be valuable but also as Sara says taking time out to revaluate your situation could be a useful option. Would it perhaps be possible to consider alternative medication to help relieve the fatigue? I don't know what you are presently prescribed but some of the anti-tnf drugs can help with this aspect. Are you perhaps anaemic adding to the fatigue? Like Jackie, I was in the position of being the family breadwinner. Unlike Jackie I was not able to carry on with my job. I have no regrets, we managed, and I am sure my RA would have been a lot worse than it is had I had that opportunity to continue. Fatigue is one of the body's ways of telling us to slow down and should not be ignored. It is a very personal decision and a very difficult one but hope you are able to find some answers. Lyn x
|
|
|
|
Rank: Member
Groups: Registered
Joined: 5/5/2011
Posts: 10
|
I would just like to thank everyone of you for the contribution of your posts, thoughts & advice. Sorry for the delay in my reply but it was also a little upsetting to hear how many of you aren't able to carry on in your careers and so nice to know I am not alone. I was starting to feel usless that I couldn't handle a hectic job, but I am not alone.
You all sound so brave and sounds like you have come through to the other side.
I have always pushed myself hard trying to leave a normal young life going out to much & always feeling tireder, and being ambitious at the same time, I don't want to give up, but this job is too demanding and it's all getting too much, all I seem to do now is work, stress, sleep, not much fun at all.
Smith-J - i am about to have a occupational health assesment to see what they can do, but it's not really a job where I can work from home, it will be useful, but I'm not sure what they can do really. I am in fear of losing my job as I have only been there 5 months, so you do not have as many rights in the work place, half of me is relived if I do lose it, the other is terrified how I will pay the bills.
What is the traffic light system?
Sarah - do you mind if I ask how you cope with rent bills if you only do 12hrs work a week, can the government help or are you lucky to have a partner who is the bread winner? What career do you do now?
If you can't work many hours and you don't have a partner, how do you get through life, what help is there?
Kerri
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
|
Hi Kerri,
I've been wondering how you're getting on, so glad you've posted. For a kick off you are not useless. I felt like this last year, feeling I couldn't contribute to the housework, paying the bills, carrying on with my job etc. But I have managed to find a 'niche' I'm still frustrated about what I can 'get away' with but after a quick bit of screaming can cope with that! You can still be a fully functioning member of society making a valuable contribution!
Push yourself too hard, you'll end up in a heap on the floor, I'm better at preaching rather than practicing what I preach, so end up in that heap far too regularly! Enough said.
Access to Work or OH can be really helpful, they might even fund a support worker for you as well as any kit which might help. Remember, even though you may not like it (I certainly don't) you are classed as disabled. Your employer has a lot of obligations to help you keep your job and employing a disabled person ticks lots of boxes for them too. Depending on the size of your employer Access to Work may even fund a lot of the support for you. So don't give up on that one yet, they may come up with something you haven't thought about.
I am in the fortunate position of having a really small mortgage and a partner with a full time job. Even though I can't make soap any more I have taken up farming because that's really easy! Standing joke around here, there are 5 of us involved and I'm the voice, brains and admin side of the outfit so I can fit it in around when I'm feeling up to it. I can also sprinkle a few seeds in pots but obviously don't do any of the heavy stuff. We struggle financially but I'm fed up of soldiering on and am of the view that I'll always be able to eat and my health and happiness is more important that luxuries.
Rich is the man on here for benefits advice, I'm afraid I'm no expert there but there is help out there albeit paltry.
Let us know how you get on Kerri and good luck
Sara
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
I can only say what has worked for me. I have gone from full time to 3 alternate days per week. This is the only way I can cope with this many hours as I can rest in between shifts. I also have got some help from Access to Work with the cost of taxis to work. I used to walk the 3 miles each way before RA but I can't manage this now. It's still a struggle, and on some days I think I can't cope any more, especially with the fatigue aspect but somehow I have kept going. I am looking at redeployment to a less strenuous role in the future. For now my boss has swapped duties around so that I do less physical tasks. For me it's important to keep working as long as I am able. However I know that I need to make adjustments or I will run myself into the ground and become ill and then find it really difficult or impossible to work. I think that everyone needs to find their own solution, and the only universal advice I would give is to check out what support might be available and what your legal rights are in the work place. Good luck.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Kerri
I am glad you have posted as I have been wondering how you are getting on. Yes I am lucky in the fact that I can continue to work at the moment but each day is an incredible struggle.
As Sara says give the Access to Work a chance as you never know they may surprise you and us.
jenni-b is the oracle on the "traffic light system". She actually wrote it. I have bumped her post about this. Look on the Newly Diagnosed section and "Sense of Humour Failure" and you will see that she is actually replying to one of Sara's posts.
As Sara says Rich is your access to information on benefits so hopefully he will be able to help you.
Take care and as they say "it is good to talk".
Jackie
xx
|
|
|
|
|
|
|
