Employment- what do luies do to earn a wage?

Hi, I was a postlady for 30 years. In my 29th year I had a rheumatic virus, last July, It was suggested a couple of months later, that I had polymyalgia rheumatica, due to all my large muscles aching. I was put on prednisolone 30mg. I am now on 2.5 mg. I was referred to a consultant and 1st she said I had scleroderma and after many tests found that I only have it in the form of Raynauds. Therefore I am now being treated for SLE. And having stiff little fingers and not being able to go out in the midday sun is no life for a postie. LOL. Therefore I am about to take ill health retirement. As I have always worked out of doors I just wondered what other people do for work?

I am not bored, I have been off work since last October. Yes I do get tired easily and can't walk the distance anymore. Stairs are a problem for me puffing as if I had smoked since my teens, after one flight. My GP has signed me off until after Chrimpo


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15 Replies

  • I am self employed! Then I am only responsible to my own timetable. lol

  • thanks for answering

  • I am an ambulance dispatch officer - I work 12 hour shifts but that means just 14 shifts every 5 weeks. I have a special chair and as long as I can talk, type and think I can work which is brilliant because I am a danger bored :-)

  • wow that sounds a really interesting job!

  • I am also self employed and set my own (very sparse!) timetable. I'm an artist and garden designer. Lucky for me my husband earns a good wage and we are OK financially. I get frustrated & find it so hard to get out and be in the gardens and get the surveying done. But I've got more used to my limits lately and don't take on work that I know I can't do.

  • Thanks for answering. Garden design is something that I would be inerested in, as I love my garden. Before posting I used to be an assistant gardener looking after flower beds at a big house in Hertfordshire.

    Earlier this year I wanted to pot some violas up. I lasted 15mins even in the greenhouse before my fingers went. Getting used to that part now.

  • I work in an office 35 hours a week for a travel company,( concessions not worth having !!) over the alast year have had varying amounts of time off, longest being 4 weeks, They seem to be pretty understanding, nut because of the way the sick pay goes because of the time of work I don't get paid.

    I have got an assesor coming in next week from Royal British Legion Industries to carry out a workstation assesment organised through access to work, and depending on what they advise I could end up with a different key board, or mouse, or even a talk to computer, dirrent chair,

    So if any one else works in an office talk to your emplyer and ask if they would be happy for access to work to come in, The company end up paying some of the costs but they can also get grants towards it

  • I am currently undergoing the scrutiny of becoming a childminder, this means I can work at my own pace and under my own steam to ensure I don't get too tired... I already have a client list waiting who all understand my Lupus but I am getting alot better and feel like I used to feel


  • I work for a University, managing a small team who look after the University's student record system. Physically it is not very demanding but mentally it is very demanding. Fortunately I have always loved my work and I think it has helped pull me through some tough times. Being a manager with Lupus has also taught me to value work life balance and if I am honest a bit more compassion for my own staff's welfare.


  • Thank you for everyone who replied to my question. Firstly I must get to grips with the keyboard lol.....where's that "p" gone!


  • Lupus does not discriminate by social class or occupation and we do all sorts and more, as you can tell by your replies.

    Having 3 friends who I know well as post people, 2 of the ladies had to leave it due to medical issues, the man also, it is a physically demanding job.

    Personally I have had jobs as a nursing assistant in a psychiatric hospital, as a tutorial assistant in a university, as an adult learner supporter for basic skills service, a project coordinator and admin person in medical research, and right now I am not in paid employment due to my chronic health problems and disabilities

    If you did want to go back to work you could get the high factor sunscren off the doctor and wear a hat which protects your face. Maybe get transferred to part time or working only in the sorting office?

    I have heard that the occupational health doctors at Royal Mail are tending to protect the interests of the company rather than the individual employees.

  • Hi Herb, shows how long it is since I have looked at answers to my ? I forgot to mention I also have Raynauds P, both hands and left foot. If I did want to go back to RM, I now have to wait 2 1/2 years. It isn't very easy wearing gloves and trying to deliver post. I worked in an outward only delivery office. The main centre is at Crick, too far to make it pay. I was told by the area manager that there were no indoor jobs.

    Later this week I am seeing a disability employment advisor at the local job centre. All my jobs have been outside, therefore I need to retrain in something else.

  • Hi I am new to the sight and have found it extremely usefull and a comfort too . I am also self-employed and work from home, which enables me to take charge of my own diary and pace myself. I can also rest when I really need to before or after working. If I work all day I try to rest the afternoon before and during the morning after. I hope this helps.


  • Hi Mitzie, Thanks for your answer. I too have found the site extremely useful. I don't seem to suffer as much as other people. I think that the plaquenil has finally kicked in. It used to be really painful when I put my hair up. I have got the mouth ulcers at the moment. Bit of a shock having so many all at once. I'm flushing with corsodyl and putting on bonjela.

    I'm sure something is creeping on me! Just picked some runner beans in the garden. Liz

  • I am employed by the local council and they have asked for homeworkers for various reasons. On the homeworker side , could be child are, distance of travel or in my case lupus and the fatigue. I really count myself as fortunate. When redundancies happen with the universal credit comming in it may be I will need to job hunt and commute which will be detrimental for me as my body is not awake when my brain is.

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