Fatigue & Work, how does everyone cope?

[Bexs18]

How does everyone cope with work? I work full time, quite a stressful job, having a major flare, already had a week off but really stuggling with fatigue/depression and the dreaded brain fog. I know I will possible be in for a disiplinery as I have had other periods of time off this year but not lupus related. Rather tough as finances dictate I need this job! Just cannot cope feeling this way On pred/hydroxy, diagnosed 10 years ago but not had it this bad.

[misty14]

Hi Bexs

Sorry to read your having problems with health and work. It's tough having this illness so you may have to work less hours. Any problems you have with your employer go to your local Citizens Advice Bureau who have employment specialists who will advise you. The CAB can also do a benefits check to see what help you could get especially if you do have to work less hours . They'll help fill the forms in.

You could also see if you could go to your Rheumy earlier either via a cancellation or your GP to maybe have your treatment adjusted?. I hope you won't need any of the above and you improve soon.X

[kazp]

I haven't worked for a long time, I did work full time then part time at the same company but they got funny about my hours, despite my work being to the same standard as i had always done, I was an Office manger for a retail company

[Shadows-walker]

Hi I know this is easy to say but ,your life is more important than money , I can say this as I have been off work for 6 months nearly and am probably going to lose my job I worked full time horrendous hour , managed to work even with flares I dragged myself into work because I needed the money , I got to the point I could not walk across a room without get what appeared to be full asthma attacks it wasn't until I started getting pains in my left arm that I stopped I have been on total rest since and so many tests ,but I am finally starting to feel better (jan) .put yourself first you will get the help you need , I live alone my children have flown the nest. Your doctor can put you in touch with social services , CAB can help with money and advise on every issue you are worrying about do you have a communitie support in your area they organised I dog walker for me when I was first off then someone to come in to change my bed and push the hover round ,you can ring social services yourself local council then adult related stop worrying about what work are going to say you can't help being ill as long as you keep tham informed as when you get info your doing nothing wrong just concentrate on getting well also the local church might help if you no anyone connected with them ,I don't go to church but when the vicars wife heard how unwell I was and I might have to go into hospital she said she would have my dogs people can be amazingly kind if you let them ,I have been mrs independentant for years it's been hard to learn to except help, I hope I have given you some hope take care be kind to yourself . X

[Bexs18 in reply to Shadows-walker]

Thanks, trying to find some different work I think will be the best idea and learning to listen a bit more to me!

[LtAngua52]

Hi Bexs,

Know the worry this causes so I do empathise with you. I didn't cope with f/t work while being ill and eventually took severance after being off work for 9 months. I knew I wouldn't be able to go back. I was working as a full-time teacher and the brain fog was causing so many mistakes - imagine getting in front of a class and not being able to find the words! And as for the fatigue........................!

I had to claim ESA for the last 4 months off work so if you do go onto the Employment support allowance you need the support of your gp or rheumy. I didn't find CAB helpful and Atos failed my medical and my ESA was stopped. The assessor at the medical noted that I was able to get to the appointment on my own so therefore I couldn't be that bad! However a letter from my GP stating that returning to work would take me 10 steps back did the trick and I received back dated ESA. Maybe if your doctor provided a similar letter to your employer that would help? They can't just put you on a disciplinary for being off sick - that is discrimination, especially with doctors supporting what you are saying. They may ask you to go to an occupational health meeting as I did. Just be honest with them, tell them everything. I found them supportive and they agreed during those 9 months that I wasn't ready to go back.

It just got to the stage that I couldn't get up in the morning I was so fatigued. It wasn't a choice I just couldn't physically move. Maybe if I had taken time off earlier to rest then it wouldn't have got to that stage so you have done the right thing in resting when you need to. Your employer should really be supporting you - especially with statements from your gp or rheumy. After another 15 months of 'resting' I took a part-time job for the past 9 months which helped me get back to the world of work, but I have just been offered a full-time job. I need it for the money (who doesn't) but I am terrified of going full-time again but I am going to try.

I don't know if any of this will help but I wish you luck

[Bexs18]

Thanks Kirby50, real help to know ther are others out there having the same experiences. Its such a lonely condition! Good luck with the job.

[Angandmia01]

I used to be a nurse. Had dealt with all situations in a busy oncology ward. I become ill at 14, it's only now at 31 that I have began the process of it all!! Been in agony for years!