Don't know we're to turn any more !!: I know it's... - LUPUS UK


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Don't know we're to turn any more !!


I know it's been a while since I've been on but after work I'm too exhUsted to even do anything. I have had lupus for a long time now related with it fibromalgia, auto immune hepatitis, memory loss (bad) and my spine is giving way. I am full doses of hydrochloraquine steroids painkillers and methatrexate. I am so tired !! I have constant headaches my back is in so much pain that I am loosing the use of my right leg and now cannot go anywhere for more than ten mins. It's now at the stage were I'm struggling to drive. I work full time and I have always had a positive attitude that attitude is going fast now. I think that if my back could be sorted out my positivity would come back but hospital have said there is nothing more than can be done...... It's soul destroying that I can't remember a lot of the things we have have done has a family. It scares me that it won't be long before I can't walk at all... And I still have to carry on working ... I don't know what sort of answers I will get from you lovely people .... Just needed to have a rant .... Xxxxxxxx

12 Replies


Is there any way you can work less hours? Look at what it's doing to you! You say you won't be able to walk soon...and you're accepting that??? Because you keep up such a punishing pace of work and your body can't take it? If only you could work less hours and be under less stress, your body may well do much, much better and you might be walking for years to come!

I am proof of this theory. I reduced the stress and productivity of my days and my pain is about 75% less. And after about 1 year, I find I can increase my load of jobs without increasing my stress...because I now handle it differently, in a better way...and still stay out of major pain. But I also follow some of my new rules limiting how long I do certain tasks that stress my joints, muscles, mind, etc.

Please think about how you might do this and still be able to walk. It would be so worth it, wouldn't it? It will be expensive buying a wheelchair and equipment to accommodate it at home and maybe in the car? Life will get more difficult in many ways rather than keeping yourself healthier.

Donnygirl in reply to BonnieSue

In June I changed jobs and went from 45 to 40 hours I used to get home around 10pm now because my job is only 2 miles down the road I get to finish at 6pm. They have been really good and even put me in a stress free dept. I cannot afford to give up work and been denied PIP. I have always taken care of what I do and I try to manage and pace myself. I am thinking of selling my house and moving to a bungalow x

Hi Donnygirl, sorry to hear you are not feeling so good at the moment. I recognise a lot of what you are saying and feeling and it is not a good place to be!!! I agree with some of what Sue says regarding reducing your hours. I have recently reduced my working week from 37 to 30 hours - this enables me to have a Wednesday off, so I only work 2 days then have a rest - in terms of money, this equates to less than £200 per month less, as tax and ni contributions are less. It might be worth considering - your employer has a duty to support you under the equality act. Speak to your Union rep, if you have one, if not an employment lawyer, usually free consultation for first meeting. You may even want to consider starting an hour later every day, small changes can have a huge impact, even if it just means YOU take control of this illness and it does not control you. I too am usually upbeat, but I have had occasions when I just want to throw the towel in and I sense that in you. Speak to your doc again about pain management!! I try and go swimming once a week, a wee jacuzzi and either steam or sauna ( I prefer the steam) at the local public pool. It can be exhausting dressing and undressing, so plan ahead, casual pull on stuff, but it is the only day a week I have a full nights sleep - so worth it in the end.👍Take care, be thinking about you 🤓😉

Donnygirl in reply to jacamac

Your right I do feel like throwing the towel in..... I feel like its a fight every day and because I take all this medication but still getting worse wondering wether to stop the chemo x

jacamac in reply to Donnygirl

Talk to your go first and get professional opinion before stopping any meds -you know it takes a while for mess to kick in, and settle down if you add/take away anything...... Take time for you, have a bath, watch a film, eat chocolate (lots of it) spend time with happy people 😘

Hi. I was sorry to hear about your difficulties and wondered if there is still scope on the PIP front. When was your PIP application turned down; are you within the timeframe to appeal? If not, is there any possibility of you re-applying for PIP? I don't know how you filled out the application form last time but Citizens' Advice and other organisations (such as a local carers support organisation, or even certain advisors at JobCentrePlus - or whatever it is they are calling themselves these days) can help you re content and to phrase things in the 'acceptable manner' i.e. using the key phrases, etc, that the DWP are looking for (!). Two very good health professionals have said to me that it is really worth using such help if applying for PIP, so might be worth considering if you haven't already done so.

Donnygirl in reply to MrsMouseSJ

My family want me to reapply for it but it is so stressful but will certainly have another go.. I know I need to kick my arse and get back on track... I am gonna talk to my rhummi about the chemo and see what she says ... Thank you so much xx

Cal66 in reply to Donnygirl

I to was once in your position over work, I was under so much stress by not being allowed to take time off sick or I would loose my job, that I had a big life changing flair & I still managed to loose my job.

Do try for the sake of your health to cut down the hours you are working. Speak to Personal & ask for them to an assessment done by an Occupational assessor, I think that the Job Centre can help arrange it but I'm not too sure, however give them a call & they will advise you.

The assessment will work with your employer to find a way that is easier for you to do your job, be it work part of the day there & the rest of the day at home, or maybe you need a few adaptations at work li

MrsMouseSJ in reply to Donnygirl

Yes, applying for benefits is certainly stressful.... My experience with ESA was hard and so I've put off thinking about applying for PIP. But then two recent chats, one with a specialist nurse, have made me think again. Both health professionals suggested that I do apply but also really stressed the need to prepare an application with proper support (they mentioned the resources in my previous post). To me, this so highlights the failings of the benefits system and that it is not designed to readily help people - but there we are; if that's the way the game works, I guess that's how I will have to play it. Do think again yourself and avail yourself of the help available. Very best wishes.


Your family is in denial..this happens quite a are not well. They don't know how SLE affects someone and expect you to cope when you are living with SLE.


Hi Donnygirl,

I'm sorry to hear that you are struggling so much at the moment. Is your consultant aware of how difficult you are finding things right now? If you feel like your treatment is not effectively controlling your lupus, perhaps they can look into changing it for you?

As some other members have suggested, perhaps it is worth re-applying for PIP to see if you could get some financial assistance that might allow you to reduce your hours at work. Organisations such as Citizen's Advice Bureau can often help you fill in the forms which makes the process a bit easier.

It may also be worth discussing your current low mood with your GP or consultant to see if they can offer you any additional support. We have a leaflet about lupus and depression that you can download at It provides information about additional support services that you can access.


Suesz has a good point. Could you afford to reduce your hours even by a bit? Is there anyone that can offer more help in the family with other work giving you a chance to rest? It sounds like you may be over doing it, determined not to let ur health get the better of you which is understandable but perhaps consider that it's OK to give yourself a break? X

Good luck


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