Here we go again!!!! Just what can I do.....

[schnauzersmudge]

I have had Lupus for 26 years and apart from the first few years and my times having my children, two miscarriages, followed by losing my first baby at 4 days old but going on to have another son and daughter, lupus has been quite kind to me. Now in my early 50s I seem to have problems all day and night which I cannot seem to solve. I recently had a total hip replacement in September, everything went fine and I am recovering well. If I don't have pain in my right knee, which needs an operation (same leg as the new hip) then I have pain in my shoulder, elbow, both hands and both feet. I do sleep well with the help of my tablets but am woken up about 3 times a night with pain in both legs and my shoulder. I have recently gone back to work, part time but am finding it sooooo hard. Am so exhausted, nearly always close to tears because I just think or am realising that I can't do my job anymore. I need to work, like most people I have a morgage. My husband works full time and helps me as much as he can. What do I do?

[Hidden]

big hug have no answers for you i had to give up work years ago. hope you find a way through can you reduce your hours? consider someting different?

[Hidden]

Hi there

I don't know what you do for a living, but It could be worth having an Access to Work assessment of your workplace. You can contact Access to Work yourself to arrange this. They can help with adaptatons to your working environment. Making your workplace more comfortable may help ease your night time pain. for example: If you sit for long periods at a desk, a specially taylored reclining chair, footstool, wrist rests, raised writing pad can might be recommended. I had a slpit keyboard which was great for my arthritis hands and Access to Work ensured my computer was at the correct height for me. Your employer is usually responsible for providing the equipment, but pays nothing towards the cost. Assuming your employer is aware of your condition, they are required to make reasonable adjustments where possible. Are you able to work more flexible hours or request working from home some or all of the time?

I wish you the very best.

Val

[schnauzersmudge in reply to Hidden]

Thanks Val for your message. My employers are a high street shop and the adaptions they have made is to give me a perching stool, though I find this too high and it won't adjust, its really a bar stool and I need to climb up to sit on it. Generally I stand all day and do not move around much, so find on my break, the stairs too hard as by that time my knees have locked. I've been given permission to use the lifts but I find these too far away to where I need to get to, so very rarely use them. And yes my employers are aware of my condition, but I am reluctant to moan, I feel there are many others who would have my job. My job is busy all the time, the customer is always right, even if sometimes they are wrong, and "is there anything i can help you with" smile is always there!

[Magda in reply to schnauzersmudge]

Having gone through what you are now going through- all I can say is: look after yourself...nobody else is going to do that for you. Might I add I found that a stressful, physically and mentally, job can aggravate your flares like nothing else can! I was in agony for I dont even remember how long....don't do this to yourself. Life has a way of looking after itself- If I was in your shoes, I would quit the job, find rest for your precious body and then find something to do from home where you can take lie-down breaks whenever needed...love yourself- you are in your early fifties.....enjoy every day without stress....stress is the single most cause of serious debilitating flares!!!Love to you- I pray for an outcome for you.....

[Yols]

Hi, I can understand exactly what you are saying as I am going through the same as you at the moment. I have been getting progressively worse with mobility and joint pain and finding it is preventing me from doing my job (part time teaching assistant). In addition to the pain from doing aspects of my job, I have been told I have taken too much time off sick over the last 9 years and they cannot tolerate anymore. I joined a union last year. Do you have a union?

My work have had to make reasonable adjustments to ensure I can do as much of my job as possible.

I find it difficult as find I am giving all my energy to my job and then collapse exhausted when I get home and cannot do anymore.

Like you, I need to work financially cannot afford to give up.

Have you spoken to your bosses about the difficulties you are encountering?

By the way love your schnauzer, is it a mini? I have two giants and a mini

Yols xx

[schnauzersmudge in reply to Yols]

Thanks Yols for your message. How odd, I used to work as a teaching assistant too and can completley understand when you said you use all your energy up at work and then collapse at home and cannot do anymore. I used to be the same (perhaps I've not addressed the tiredness as much as I should have) Iworked as a TA for 8 years when the local council closed us down. I've worked where I am now for nearly 5 years. My supervisor says I should be on a disability, but tried that 6 years ago but I filled in the form on one of the few days when I felt good and I did'nt get it.

I love my mini schnauzer, he is just so funny and loving and my life would be very empty without his nutty presence! And you have two giants and a mini, well what can one say............!!!! LOL ! xxxxJulie

[Sue2803]

Hi, I can concur with everything Yols says, I too work full time at the moment as a staff nurse and am finding it increasingly difficult at work. I have been given written and verbal warnings because of my sick record. Not sure how much longer I can carry on but really have to, because of financial reasons.

It is very difficult and really dont know what to advise, all you can do is keep going as long as you can.

Good luck

Sue

x

[schnauzersmudge in reply to Sue2803]

Hi Sue, it just does'nt seem fair that we are all struggling with all the demands on our lives'. I find I feel I dare'nt complain about anything at work, as there are many others who would easily jump into my role at work. Then you have the guilt when you just have to have time off at work, the guilt, that you've left collegues to carry you when you're off. The guilt when you go back to work, because you know deep down that you cannot do the job as good as you used to. then you have the inner dread, "how long will you be able to carry on till you have to take time off again" Often I don't feel part of the team just because of the time off and I'm sure they do understand but maybe they don't and think I'm pulling a fast one and are just lazy. Bosses and Collegues!!!

Like you say, you just have to carry on for as long as you can.

Take care and good luck

Julie x

[Jaxqueline]

Hi

I totally get the work thing, for the past two years I have been embarassed and taken time off as holiday, I now have a new employer who has got wise to this and told me that I have to take it off sick. However, if you are off more than three times a year it is questioned. You can't win! Anyway, I too feel guilty that I only work part time and don't appear to be pulling my weight but when people come in complaining with little sniffles or hangovers I do get quite angry.... Rant over. Best wishes...

[Renie]

I really get this, Ive had sle with cardomiopathy (not good with spelling... sorry), for well dignosed for 4 years now, my firm is aware of my illness and since my boss has changed, he has been brill espeacial as Ive now been off 3 mths with pancreatis been in hospital 3 times in 6 weeks, still not sure if it has anything to do with my lupus, but Im being phased into work starting tomorrow which is good. This is also the 3rd long term illness with Lupus I have had since Ive been working there, so getting worried that I mite not be able to work for much longer as Im part-time anyway!!!!!!! God going to shut up now I could go on for ever, sorry

[Renie]

NOT "had"..........H A V E

[MandaM]

I too work for the NHS on a ward. The NHS role is to cater for sick patients, treat them with utmost care and dignity. Shame this is not how they treat their genuine long term illness staff! Grrr to those employers who have no understanding and penalise staff who have a genuine reason for needing time off.

[Jestina77]

I was so encouraged by all your comments, I had to participate. I work as a benefit assessor in London. I was granted working from home on the basis of my telling work had lupus. Been a homeworker for 3 years now. I go in for counter duty, meetings and appraisals. Counter duty drains me - it was meant to be once each week... But management are working with less staff, redundancies, natural wastage etc. I am being called in more and more. I come home sit down like a zombie, then drag myself to bed. I worry about the mortgage so l've not taken sick, just rest days. If I take time out sick when the re-mortgage time comes round, this has to be declared to mortgage lenders... Health questionnaire. I have only managed to continue 'working' because of WFH. But it is being eroded. Work never asked and l never provided evidence although my frequent vists to the hospital have been noted. Due to visit my new doctor ASAP and ask for it to be verified so they will stop stressing me out. Body and brain cannot synchronise 1st thing A.M. Suffer badly with fatigue, brain fog and a touch of depression. I Work harder and longer so that I meet the daily targets just so they won't pull me back in full-time - because yet again management have re-invented the chair but this time it has two legs and must balance better than the four legged chair. At work no time for tea break, or eye rest break. Back to back interviewing - the cut the staff numbers but no regard to same amount of customers through the door or even more Trying not to but can only see a spell away from work as a progressive option. I too feel awkward with my team members as they believe we lounge around, At Home. If anything its more stressful, trying to close the doors which would make us have to return into the circus of quantity. Quality, quantity, sick levels.

Thanks for reading.

[Jestina77]

I am under St Thomas' dermatology but not the lupus centre. I am hoping that the new doctors will let me keep to st Thomas' and not revert to the hospital in the area that I now reside. I will find out if the PCT have a block on my attending out of borough St Thomas' once every six months. I hope not.