Fatigue & Work, how does everyone cope?

Hi bex18. Sorry to hear that your suffering so bad. I really don't know how people manage to work full time! I take my hat off to you. Have you told your consultant how much you are struggling? Pred and hydroxy wasn't enough to make me well, take mycophenolate aswell now and it has helped me so much. I work from home luckily as we have a business but I just could not of gone to a full time job when I was that bad.

Have you explained to your boss about having lupus?

Big hugs to you

Jo

Thanks Jo, lovely to know there are people feeling the same way. I have explained to my boss, but as I look so well, facially rash is now going for now, not sure she really believes me. Going to get a letter from my Rhumy see if that helps. Hugs to you too (that bit made me cry last night!)

That's the thing isn't it? Everyone says to me but you look so well! Could scream at them! So frustrating inside you feel dreadful!

That might help your boss understand if they see it in writing from a specialist.

Ahhhh, sending another big hug. Us lupies need lots of them

Jo

I would definitely speak to you doctor about help. At least when you have your disciplinary you can advise them you're working towards dealing with the sudden increase in symptoms - much better to go in with a proactive attempt to improve matters. Stress will be incredibly hard on top of full time hours - I manage full time but my job is less stressful than yours sounds. I'd be looking for alternative employment quietly in the background - just this exercise should make you feel a little less stressed and couple it with the seeking out medical assistance and hopefully there'll be a light at the end of the tunnel

Hi Bexs

Sorry to read your struggling with your health and work. You may need to adjust your hours, full time is asking a lot of yourself. Any problems you have with your employer, go to your local Citizens Advice Bureau who have employment specialists who would help you. Hope your Lupus treatment can be adjusted to help, you can always try an d see your Rheumy early via a cancellation or your GP. Take CareX

Have you had occupational health involved? If not, consider it. They are there to support you (not your employer, contrary to popular belief) and will make recommendations for alterations to your work environment etc that may help you. Certainly it will highlight to your employer that you have a serious medical condition and that they may need to consider changes to your work hours/rest breaks etc. Good luck Xx

Occy ealth are definitely the way forward. I have been off this time for 4 months now, no other time off this year although around 18 months ago I was also off for the same length of time after a major (related op), I have crossed the 1/2 pay threshold around 6 weeks ago and when my flare was very active. The input from work was that they were going to have to consider either disciplining me on grounds of capability or even the option of medical retirement, which was the last news that I needed. Occy health got involved at this point and the corporate stance has now changed to desperation to get me to return to work I some capacity regardless of any workplace changes thy may have to make including working from home at least a percentage of the time, this from a position that my job needed to be office based 100% of the time.

I was considering starting a phased return this week but have since suffered a relapse of my symptoms and GP has signed me off for another 5 weeks. This would have no doubt caused a reaction from my employer in the past, but now at least I know that with Occy Health on board this is one thing about which I need not concern myself.

I started on methotrexate and was tolerating it well but at the same time my body started to fail in other ways, chest pain, tiredness etc etc so much so my doctor has signed me off work and I have now been off for six weeks. Work has so far been ok and have said to come back when im well, I dont think they realise I will never be well. I work full time but couldn't cope as like you my job is quite stressful and my colleagues can't understand my conditions which causes more stress, I asked to drop my hours to four days a week, work agreed but are under the impression that this won't be along term thing, I hope it will be and if I could afford to drop it even more I would.

I wish there was a magic wand that would make me better, and you all too, but there isn't so we have to try and make the best of what we have. I do hope there isnt a disaplinary for you and if there is then you should go to citizens advice as surely they cannot punish you for being ill and in a way disabled, I know thats not what we like to think but with our conditions it does disable us and they can't discriminate you for it surely.

I am not looking forward to going back to work, not just the work side but the people and the not understanding me and my lifelong illness.

This is starting me with the chest pains again and im only writing about work.

Good luck anyway with your work and im sorry for ranting on but it seems you've opened my can of worms. Xx

Thanks soo much for your replys and help, got my meeting with my manager this afternoon. I have given her a booklet from the Lupus UK website which looks really helpful, not sure if she will look at it though! New to this forum, so nice to know your are not alone as its a lonely kind of condition. Going to phone my Rhumy to get a letter from her if this might help and see if she can help meds wise. Roll on the winter!!! Love to all.

Its really hard isn't it? I have had to reduce to part time work as full time was just making me ill. I am now classed by my employer as disabled under the disability act and they are very understanding as a result of this. OH support me and since working part time I am much better at coping but its still really difficult sometimes. Does your employer know the full extent of your problems? The disability act really does help as it affords you allot of protection. I gave my manager information leaflets to keep in my personnel file so as they have some sort of a clue what lupus is!!!

Its so hard day to day, people cant see that there is anything wrong with you. I tend to keep all my symptoms to myself now as I find the sympathy dries up, People don't have a clue what it is like to live with lupus, they think because you look fine that you must be well. Listening to people moan when they have a cold or a headache is hard when you have pain most of the time. They also think fatigue is the same as feeling tired, which we know is not true. Quite often I spend my days at home resting or in bed, People have said to me 'your so lucky working part time' but it is a necessity and yes if I had a pound for everyone who tells me I look well!!!

Could you reduce hours or ask for some concessions for days you are struggling? Be kind to yourself,

Sending you love and more hugs,

Bluebell63

Hi I read your message and I had to reply. I'm in the same boat as you and since writing on this forum I've managed to put some things in place. I had a really bad viral infection which resulted in me being really poorly and was signed off for three weeks (I teach so this was quite problematic!) once I was due to return to work my GP told me I need to do a phased return but in order to function day to day and have some form of quality of life then I need to reduce my hours. I currently work come home sleep then get up to try and run a home and by Friday I'm on my knees! Since returning to work I requested to go down to 3 days a week, they said I have to see OH and go from there. Since then with a certificate from my GP I have been doing 4 days a week which has helped slightly. However I saw my rhemy yesterday who said by bloods are still very low and that if reducing my hours doesn't help I will be moved onto meta something meds as the plaquenil isn't really working for me as I still have lots of symptoms. The lupus uk group were fab and sent me a booklet through to give to my employer as none of them had heard of lupus and it's surprisingly how attitudes have changed.

I would request to see OH as everyone on here reassured me that they were very supportive (I was really worried at first!) I really wish u the best of luck don't be down we will help look after u xx

I sympathize totally. I am tired of getting blank stares from people when they hear I have lupus and why am I not working. I am responsible for getting my children to and from school, would love to work to help with family finances, but unwilling to end up very sick in the process. I am low end and probably would be able to work part time, but not always easy to find a job that is low stress. Mostly sales jobs part time. Not interested in that kind of stress. But, mostly, I am tired of people not understanding and thinking I am a hypochondriac. Especially my family. That is the worst. I don't say anything anymore because I am tired of explaining when people don't really want to hear it. Sort of sad. Makes me feel unloved.

Well the meeting did go better than planned, going to be referred to occ health and have been offered some work from home days YAY!!!!! It is a start and thanks to all your kind words, hugs and love I know I am not on my own. No I can't go to bed any earlier, no I can't just get a grip or snap out of it this is me and tough if ya don't like it!!!! If work wants me that bad they are going to have to make allowances.

Can't stress how much a difference it makes just having other people who actually understand.

Great! Occupational health will hopefully help you plan and make adjustments as needed. It is really tough working and trying to function out of work, so do be kind to yourself x

I'm so glad things were positive at your meeting. My fatigue is the most difficult symptom to deal with and despite being on hydroxy 200mg x twice per day, I am still battling it. I have three children, aged 10,9 and 6 and am very often in bed before them. I work 3 days per week in a school as a Teaching Assistabt , so my 3 days are actually only 8.30-3pm which allows me to do the school run and after school clubs etc. I am very tired in the evenings when I work and on a Monday am in bed by 7pm. I am better on the days I don't work. I know that if I was working 5 days that I would have to take time off sick as I wouldn't be able to cope. The tiredness causes my headaches etc if I don't keep it under control. I guess it's about constantly being realistic about your symptoms and what you can achieve in a day without making yourself worse. Good luck with it all - I hope the working from home days help!