For those of you who have managed to continue working with lupus, what would you say is the main benefit to you?

[Paul_Howard]

I'd like to use one or two answers in a LUPUS UK publication, so please specify if you're happy for this.

[Lupylass]

Working provides me with a sense of purpose and structure each week. I did switch from a full time, stressful job to a part-time more straight forward job not long after diagnosis, which allows me more time and energy to participate in other things outside work too, but working distracts me from any ongoing symptoms and gives me something else to focus on.

I'm happy for you to use this in the publication

[willowwag]

Hi paul, the main benefit i think of working with my lupus is it means i cant give up, i work 30 - 43 hrs a week and every day my body hurts from head to foot, i dont get company sick pay so i have no choice to battle through, this site has given me the strength to address my condition with my boss and through advise and the laws on working with lupus, i am now able to wear trainers to work, to make the pain less in my lower joints. Working with lupus is painfull its a every day battle.

[Bluerider]

For many years following diagnosis I was unable to work and I became extremely depressed. I have managed to achieve a lot in my career becoming a CEO of a charity and this has given me a great deal of purpose and motivation in my life. It is not easy as I deal with daily symptoms (a new one every day) and the unpredictability of the disease which makes it hard to set up meetings. However I reckon work kept me going over the past 14 years and stopped me giving up. I know I can make a difference and therefore don't just feel defined by being ill. The downside is the daily paranoia about the understanding of others as I don't look ill. Janine Rennie

[Welshexile]

I fought my Lupus for 15yrs trying to maintain my high-powered job......Lupus won! For the past 8 years I have been working very part-time for a local charity which has been a revelation. I am able to work and manage my Lupus which gives me a sense of purpose and something to fight for rather than against. It does help that my employers are extremely accomodating and flexible - I think is due to the fact that they are a small charity rather than the Global Corporates I used to work for who treated me like any other commodity.

[russell in reply to Welshexile]

I worked for the past 6 years, and completed a Foundation Degree. However, Lupus won! I suffer with daily headaches, which is a nightmare. Currently my neurologist has given me new treatment - fingers crossed! Unfortunately I did not have a very sympathetic boss who ignored recommendations from our occupational health department, making it very uncomfortable and difficult for me to carry on with my daily duties. So, after struggling for sometime I decided to finish with the company. However, I will not give up. My future plan is to complete my BSC HONs Degree, study a little longer and then supply teach. This will enable me to work around my illness, telling agencies that I am unavailable when I am ill, giving me peace of mind.

[suki65 in reply to russell]

youtube.com/watch?v=MN7BoE8...(Not working as expected?)

articles.mercola.com/sites/...

it is worth trying this it has helped people i know including myself the above on youtube is incase anyone is on this medicine please all be carefull as i am a patient trying to right what statins have done to me

[Jennie_103]

I would say consider what is the most important to you; your work or your time for yourself to rest and enjoy life. I work 30 hours a week rather than 35 and it makes a huge difference. Keep track of your hours and make sure you don't inadvertently give your company a lot more time than they pay for! It feels like you are being nit picky and mean, but if you're better rested, then they get a better worker who is less likely to need sick leave from over work...

I think that I'm also lucky to work for a small local charity who are more flexible and treat me as an individual rather than a large company.

Simple things like a really good chair and adjusting screen heights can make a huge difference too. Don't put up with any additional problems to cause you pain that you can fix!

I'm fortunate as well that the medications are working well for me at the moment and my pain levels are manageable. If things get worse, I would definitely consider working part time instead of full time.

Feel free to use anything useful in a publication,

Jennie

[sparkle247]

I was a part time Head Nurse of a busy veterinary practice [and by part time I mean 34hrs a week!] until my hands were so painful and crippled I could not use them to stitch up, take bloods or even hold animals anymore. This was a position I had held for 23years so having to give it up was like removing a limb to me

I became self employed to make ends meet, a huge reduction in pay but at least it is something. I work when my illness allows, sometimes with vets, sometimes paperwork with other companies and sometimes my own crafting work depending on the severity of my pain and disability. I also do voluntary work at my sons school, just listening to the pupils reading, and then reading to them, nothing too taxing! It does give me the sense of commitment that I need after 23years of hard work, even though some days I struggle for very little money. I feel I am not yet ready to register as disabled. But I am sure that will change soon, as each day does become more and more debilitating.

I am happy for this to be used

[lennox]

I did work full time but after flare up after flare up I was advised by my doctors to lower my hours, I was also put on stages due to my sick, so I went part time, was ok for a while, I was off sick in April this year and, was giving a stage 2 meeting which don't help as everyone knows stress makes lupus worse, so I asked my company if I could work from home as people can, and was informed because my sick I would have to go via occupational health so I said fine lets to it , and so glad I did they recommended me working from home,also they had to remove all my stages as the can not take a lupus flare up as sick , like a common cold or sickness has to be treated different, as I never lied on my application form, working gives u a reason to get up and do something, keeps ur min ticking and although sometimes you really have to push urself what else will pay ur bills

[teaparty]

I have three part time jobs. I work as a carer in the community. I do private care and I work in a day care centre on bank cover it is hard as my husband works away I have the house and children to care for to but I wouldn't have it any other way

[Thaddeus]

A good question.

For me when I had my crisis of health and had to face up to being ill, I was forced by family members to take a day off after collapsing one evening.

So the next morning, I was lying in bed and that was when it came to me; Every bone, joint, muscle, nerve and fibre of my body hurt. And it hurt to think and it hurt to lie there thinking about it. Sod this i said, I'm going to work. To be honest i was pretty useless at work and ended up in great pain and discomfort. But doing nothing was worse in some ways, certainly not moving is a bad idea.

Its all a balancing act, management rather than cure. Doing but not overdoing.

[Suzie]

I now work 3 days a week, balanced with working in my garden. I find that balance is great. I became very unwell when I was working full time, and now I manage my symptoms well. Gardening is a great therapy but can be a challenge to keep out of the sun. Factor 50 and fully clothed, hat etc. I have not been happier than now. My energy levels are near normal and my concentration has improved. I take hydroxy and BP meds as well as HRT and all the lotions and potions for skin probs etc. But my joints with regular exercise and reduced stress are massively improved, no struggling to get out of the chair or hobbling down the road for me now. I realise my symptoms are mild compared to most but I do believe the work live balance is very important. I am happy for this to be used for research.

[AlisonM]

Working full time allows me to feel "normal". It gives me purpose to get up every morning & the motivation for lupus not to own me!! I'm a primary teacher so at times lupus does win, but if I have to go home to my bed after work for 2 hours at least I've done something. It's difficult, especially when you're proud & stubborn like me but I see others in my job & it makes me feel good when I'm doing the same as them....but I have lupus!!

You can use my ramblings if you want!!

[wotshernameagain]

I still work a full time job (35-40) hours to do it however the cost of this has been my social life (Got to be in bed by 9.30 or will not wake up on time or be able to function properly for work)

Regular doctors and hospital appointments mean that taking a cheeky sick day is out of the question

I try not to bring too much attention to my condition which means taking lots of painkillers and suffering in silence as I am scared that It will affect future promotions.

I really want to own my own property and perhaps start a family so right now until I have saved enough for these crazy deposits I have no choice but to work.

[Paul_Howard Partner LUPUS UK]

Thank you to everybody that responded to my request. There are some great answers here and I've got everything I need now.