[Roseanne]

Hello all,

I am working full time at the moment, and really struggling to keep going.Somedays I will be fine...a little joint stiffness but I can get through a normal working day and then rest in the evening, But lately I ahve been having days where I do a few hours then I just get extremely tired, and my joints swell up and begin to hurt, and both sitting still and trying to move hurt equally and drain what little energy I have left.

I'm quite bright, and on good days I can do a lot of work and I love to do what I do, but this continued draining tiredness and pain is just doing my head in. I take painkillers and Nsaids but some days they just don't cut it. I feel guilty about not working because technically I can still work and walk...it just hurts a lot and drains me.

Does anyone else feel the same way? If you reduced your hours or got on disability, how did you justify it to yourself and the people around you? I am just trying to find some help to have the words to communicate how difficult living with this illness really is!

Thanks,
RM

 

[Maz0252]

Hi Roseanne,

I'm really sorry to hear you are struggling so much, there is such expectation that we put on ourselves and others put on us to keep going as normal that we feel as if we can't put the brakes on.

I can't really offer too much advice as I am in a similar situation to you. I work full time and need to keep in work as I am the breadwinner and my job is well paid. I take NSAIDS and Co-codamol to help with the pain and am on Plaquenil (but have only recently started it).

I have found that I do have to listen to my body as if I push myself to far when I feel rough I will tip over the edge and will be in a worse position than I was before - ie only having one day off but instead having a week off.

Talk to work about things they can do to make your life a bit easier. There are other posts on this site about job accommodations for people in our position. See if you can have an occupational health assessment. Can you work from home sometimes?

Others will probably have other bits and pieces of advice for you but my main advice is always to listen to your body and don't worry about being accepted by friends and family if you do need to give up work either short term or long term - they will understand.

Take care

Maz

 

[elisabethm]

Hi RM your body tells you when you are doing to much.I have been on disabilaty for 11years now.If i had the choice i would be working but i was on disabilaty before i was diagnosed with lupus yes it is hard but you have to take in what your body and mind are telling you.You will get to the point when you know that you can't do both Wishing you Well Elisabeth

 

[alisonr]

It sounds just like my life!!!

I have been diagnosed for 2 and half years and am SLOWLY accepting that i am not wonder woman and i can't do it all all of the time. I do still work full time (i'm a primary teacher) work is hard some days, easier others. Its trying to get the balance right - its my head that is my main problem - i don't want to reduce my hours, I'm only 27 - worked damm hard to get my dream job and don't want to give it up.

Saying that i have got better at balancing things, afternoon/early evening naps seem to revive me during a bad spell. Work are very understanding - and can see when i just need to go home!!

I'm afraid i haven't found the perfect solution yet, keep going and resting when you can, and try to remember we have to have a life outside work too - i've only just begun to realise this myself. There is no point killing yourself at work then go home and be tired and grumpy to the people who you love.
If you find the answer - let me know!!
Lots of luck
xx

 

[Merle]

Hi RM

I've been in your position. Having put so much into my profession, I came to define myself entirely by my achievements in it. Thus, when I had to give up my work, I found it difficult to justify my existence to myself, let alone to anyone else. To be honest - my father shared my similar work ethic and would come out with statements like "so what do I tell other people my daughter does?"

It was this question that brought me to my senses. What a trivial question! What does it matter what I do to earn money to feed myself? Was he not proud of the person I had grown into? Obviously not! I decided that his question said more about him than me.

Now I take on jobs and work for charities, as and when I find I am able. I've discovered that there is so much more to me than just being a successful professional - been there, done that! The challenge of trying lots of different things has been much more interesting and fulfilling. Now when people ask what I do - I say I am a dilettante!

I have to say that I do tend avoid telling people of my lupus (or at least until I am obliged to) if they do not themselves have a disability. Others with disabilities are aware that you are not a saint or sinner for having a chronic illness - just a person with a particular difficulty.

So I think that the secret of dealing with this issue is for you to come to understand your inherent value and continued potential - and that these are distinct (if harder to describe) from your current / any job. You will then be able to find a way to explain things to others.

Hope this helps.

Merle

 

[lazylegs]

Hi Roseanne,

I found cutting back my hours helped me continue working for a few more years. The justification was easy. My health was more important than any job. I owed it to my family and myself to do whatever I could to minimize the disease.

The money was great, but I was worthless by the end of the day. My husband had to do the chores I couldn't manage putting an extra burden on him. The life we were living was no life. It was work, bed, work, bed. The weekends were errands, chores and resting so I would be prepared for work on Monday. There was no socializing, shopping for the fun of it or even dinner out. The money I spent on medication was really being wasted because I wasn't giving it a chance to work.

Once I was working fewer hours I could come home and rest for awhile and then tackle a chore if I felt up to it. Getting a chore or two out of the way made it possible to do something on the weekend. Both of our mental dispositions improved greatly.

Unfortunately the disease continued to progress and I eventually had to quit. Looking back I wonder if I had cut back sooner if I could have avoided some of the complications I now have.

It is a difficult decision. Keep in mind that whichever way you decide doesn't work out you can reverse it at a later date.

Take care,
Lazylegs

 

[sharronshiraz]

This is so true,

There is no point killing yourself at work then go home and be tired and grumpy to the people who you love. But this is what happens.

But it is so hard to admit to yourself and others you need help.(guilt) I am working 25 hours a week and have to admit with 2 kids it is hard,to juggle shopping,housework etc. my husband is supportive and wants me to try and cut back on my hours.I am seriously considering it,this is the 2nd time this year I have rang in sick, feeling dreadful at the moment cant sleep,tired,achy,depressed etc....
So hopefully I can have an occupational health assesment and get the ball rolling to cutting my hours,how you guys can manage full time work I dont know, it must be very tough.

 

[pollianna]

I am in the same position. I have to have my legs up at work ayt my desk. I am in ever increasing pain....I have 2 jobs and work 11 or 12 hrs a day. I know I am doing too much but I look so fine that the government would not give me disability....I am left with no choice but to work :worried:

 

[Roseanne]

It is so good to hear from you all, and know that I am not alone in this experience!

I am really struggling this week already...my elbows and arms are so painful that it hurts to type, and I can't pick up files...though I only found this out when I tried, then dropped it because my wrist hurt so much. My colleauges always seem amused at my colourful language when that happens...they are very forgiving!

RM

 

[debatat]

Hi Rm, I got to the point where I had to leave work as it was making me so ill. I found it so hard to accept, as I had put my career on hold for my boys and now they are grown I am sick! But it got to the point where I was having no life and worrying my family as I was so ill. I was also so grumpy through guilt at not being able to everything. Now I can pace myself better, and my family are happy. How do I justify it? The most important thing to me is that my family are happy and with me at home they are. I have less severe flares and have avoided hospital since giving up work. I think you get to a point where you know its time to take action. It needn't be as drastic as giving up work, you can reduce hours etc. Your health is so important, you owe it to yourself to give yourself the best chance of a good quality of life. I hope you can manage to find a way to do this.

Deb

 

[Kyphi]

Hi Roseanne, Im so glad you brought this subject up, thanks.
Im due to start back on a phased return in two weeks time and Im really anxious about it. My employers have been fantastic but like yourself and others here, Ive worked hard for my dream job and I love it and Im terrified of how I will feel if I have to give it up. So Im in the situation of 'suck it and see'! As a planaholic this doesnt sit easy with me but I think we need to take one day at a time. As for justifying reducing your hours, do you need to? Youve proved that your a good loyal worker and you're good at your job, so its not about justification, its about you being the best that you possibly can be at work and at play whilst living with SLE, and if that means reducing hours then so be it. Its easy for me to say (I say to myself) Im trying to come to terms with all of this myself so once again thanks for this post, let us know how you get on and all tips are much appreciated :lol:.
K

 

[Sdwivedy]

Ya I agree....some days are really tough .Getting up in the morning becomes a challenge and you feel dead by the end of the day. But I guess we have to live with this and take each day as it comes. Enjoy the good days and just crash out on the bad ones. Feeling sorry doesn't help in the long run.