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Discussion Starter · #1 ·
:lol: Work that is:lol:
I normally work 35 hours a week but am struggling. I was off couple of days last week and am now off all this week. I hate it as since epilepsy hit me I have only taken minimum amount of days off and have only been signed off by Dr once and thats in 23yrs.
What do you guys do to manage?
 

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I'm afraid I can't answer that one because I don't! I haven't been able to work for just over two years now... and no, I don't know how some do. I suppose the answer is that everyone's lupus is different and also jobs can be very different. Before being off for lupus my sick days totaled about two weeks in twenty years and that was for peritonitis when I had my appendix out!

:hug:

Katharine
 

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Hi, I am unable to work now, so can't answer you from experience. Sometimes reasonable adjustments at work can help or changing, cutting down slightly on hours can help. Otherwise adjusting things at home.

Also being on the right meds can make a huge difference to how we are feeling. If you are struggling its time to either talk to your doc or boss or both.

Deb x
 

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As already said, it all depends, i worked with my sle from when i knew what was wrong even though i knew things were hard going, i still carried on, then had to go off for 11 months, still tried back at job,for just over 12 months, then work finished me on ill health......

i think it all depends on how bad the lupus is, i know fatigue is the biggest issue im sure, well it was for me..... until things got worse....

hope you ok Lin xx
 

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The only way I survive right now is that I have no life. I work full time at the moment. I go to work, I struggle through the day on a cocktail of pain killers and chocolate, I come home and curl up and die. I'm so exhausted I could literally cry and sleep for a month. My weekends are mostly spent in bed. I'm lucky my partner and I chose not to have a family, as I literally could not cope. Right now I hate my life.
 

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I do a small amount of work when I can from bed if necessary, using laptop and phone. I could not work outside the home any more, I am way too unreliable.
At the time when I had to give up work altogether i had just reached very, very good earning power after a lot of hard work! It makes me mad when people talk about the "secondary gains" we get from being ill. Much as appreciate things like DLA, I really do, they are only a fraction of what I could have been earning.

Letting people down all the time was dreadful, and sometimes I would run dreadful temperatures and be suddenly sweaty and smelly. It was a loss at the time in all sorts of ways. To all those who still work, particularly those who are struggling financially, I really, really salute you.

x Lola

PS Ooops that sounds a bit moany, just a matter I feel strongly about.
 

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I cant answer that question either. I am in awe of someone that works having lupus.

My brother has lupus and he works full time. I honestly don't know how he manages it all.

Take care,
Lyn
 

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hi I had to reduce my days at work to 4 per week as of this year. Iknow what you are talking about myfeet are really swollen and painful on a barage of medicattion you know pain patches took 6 panadiene forte today on the third day as patches do not work well for me the breakthrough pain unbearable and that is justt the pain not to mention the fatigue. I am going to see \ call reumy on thursday to see what else can be done. I cannot afford to work less but may need different treatment who know but I know what you are all saying.:wink2::sad:
 

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I stopped working in Feb of this year. My husband did construction at he same place for years until the buisiness went down and then I had to pick up some more hours at my job to work it all out. I started at full time then the work got to be too much for my body to handle so I dropped to part time and still the work load was too much so I dropped to call in status which was great at the time.. on the days I felt good, I worked and on those days I did not, I stayed home.. that was until my husband lost his job.. I was starting a nasty flare and well I pushed myself to my breaking point with full time hours and only one day off.. it was horrible. I actually stopped working in Feb and my husband got his new job in March .. I could no longer function at the rate I was going.. So although I "know" what its like to work through Lupus flares, I did eventually stop.. right now I am work free.. ;)
I wish you luck! I hope you find balance. I will say this, I did what I felt I had to - to get my family through the hard times BUT it cost me my health and I have since been on a downward spiral so be careful..
 

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I too work full time, and hate every minute of it. I work and go home and am like a zombie for the rest of the night. i sleep and do it all over the next day. And as Alimonkey said, I too sleep my weekends away. Itis so unfair to do to my family but it is what I have to do right now financially. My husband is in school and we only have my income right now. I want to quit but can't. the moment I can, I will stop, it is too unfair to my family!
 

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Discussion Starter · #11 ·
Thanks for all your replys. It is crap eh:( I am just going to try to blance things out I reckon. I lost my parents in 2000 and 2003 and swore then I would enjoy every-day as who no's what will happen tomorrow so I really can't hate having to work till I drop and lose every wk-end cause I'm sleeping:worried:
 

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ive not been able to work for 2 years properly im a carpenter and cant even physicaly do my job now and the last time i worked i made so many mistakes i was ashamed and couldnt get out of bed for 2 weeks after however im trying to keep my brain active and starting french classes and also going to do a web design coarse and eat lots of haribo sourmix while im doing this but not while im learning french though thsat would be silly
 

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I gave up a very well paid job in August because I couldn't cope anymore. Up until a year ago, I hadn't had any major health problems (although since diagnosis, my husband reckons I've had it for years). In Oct last year, I was admitted to hospital for 2 weeks with a 'mystery illness'. I returned to work in January 2009. Although I only worked 22hrs per week, it was a stressful, full-time equivalent job and I found it very hard to cope. My GP wanted me to take a month off in June, but I had a major audit to get through so I didn't take it. My GP then suggested working less hours but my boss said 'you're either well enough to be at work or not', so I decided to give my notice in. My husband reckoned I should have just gone on sick leave, but I would have worried about what I would be going back to as I was the only employee who could do my job and, at this point, I hadn't been diagnosed.
Although I miss my friends (and my wages!), I know I made the right decision. I've popped in to see friends since I left and there's been all sorts of problems, but I didn't have to worry about any of it and it was such a relief! Plus, on days when I'm struggling to get up or do the most basic things, I don't have to force myself to go to work.
 

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A lot of us on here can't work due to the severity of our symptoms but it is very individualized. It took me a long time to give up my job but it really got to the point where I couldn't do it and didn't have a choice.
 

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Discussion Starter · #15 ·
Thanks for the replys :) I took last week off work to just rest up see where to go from here then went to see "a good doctor" not like the one last week:mad: and he has signed me off for another week:rolleyes: Feel quite bad but I am praying that after I see specialist next week she is going to tell me its my meds for epilepsy that have brought lupus on and once meds are changed I go back to just dealing with E which is enough for me:lol:
I hope you all have fingers crossed for me, I am right in thinking if its the meds once discontiued no more symtoms?? It would be discoid lupus YES???
 

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In most cases discontinuing the offending drug would relieve your symptoms in time. You would be classed as having DILE or drug-induced Lupus.

Good luck with the specialist.

Take care,
Lazylegs
 

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Hi Pixie,

Yes if it is the Tegretol causing this then once you are off it for a while everything should settle down. It might take a while though everyone is different.

Not sure what you are asking re the discoid lupus? Unless you were getting confused with the two terms:

DILE - drug induced lupus erythematosus
DLE - discoid lupus erythematosus

?


love
Lily
 

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Hi Pixie, hope the rest from work is helping you, all the best for your specialist appt. I hope you get some answers.
 

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alimonkey;561946 said:
The only way I survive right now is that I have no life. I work full time at the moment. I go to work, I struggle through the day on a cocktail of pain killers and chocolate, I come home and curl up and die. I'm so exhausted I could literally cry and sleep for a month. My weekends are mostly spent in bed. I'm lucky my partner and I chose not to have a family, as I literally could not cope. Right now I hate my life.
Feel the exact same, had a good old sob last night to Husband to be! He asked what was wrong, silly question! We were watching a film night before and i was moaning that i wanted to watch a film to the end without dosing off. Bless him that he got sky+ and now records my programmes, so that i can watch them again.

I work 37.5 hours, have just moved house and decorating and also thrown in a wedding to plan, so had to give up socialising. I wouldnt mind if there was nothing after this but theres always something to do, I DONT want to do anything, nada silch. Just rest, i dont get this and ive tried so hard. Im slowly making myself ill and can see it, but och well. Worst of all no one understands...this is why im back on here, going to have a read through posts x
 

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Hi i am going though smilar at the moment. Have just had to go back to work after having children cos of finances. It is a checkoput job at a local supermarket and is 3 1/2 hours 5 days a wekk. I ahve been there for 2 1/2 weeks and it is already killing me. at the moment i am typing with my left ahnd cos my right hand is so sore, my knees are killing me and i am so so tired. I have not yet been officially diagnosed but have my next appt to get test results on 9th december. i am on probationary period at work at the moment so am terrified of taking any time off sick in case they sack me. i dont even know if you can get disability cos of lupus??????
I have no life, i dont go out, i have 2 kids so feel bad cos i am too tired to do anything with them. I love cake decorating and am doing a course in that but am now struggling cos my hands hurt so much cos it is really fiddly :( Just hope rheumy can give me some drugs that will help!!

Beccie
 
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