full time job and SLE

[CREATIA6_]

Good morning

My name is Nina and I am suffering with Lupus since 2003. Recently, for the last year, I am struggling with my job. I would like to ask you how are you coping with full time job and Lupus?

Hope you all have a nice day

Nina

[svfarmer]

hi Nina I’ve had lupus SLE for 7 years , I had to give up my job as was in too much pain and extreme fatigue , a lot of us on here have had to give up working but that’s not to say that you will have too as there are equally lots of people on here that hold down full time jobs, every person is different . Xx

[CREATIA6_ in reply to svfarmer]

Hello and thank you for your reply. Did you go retired or you just stopped working?

[svfarmer in reply to CREATIA6_]

I was only 47 at the time so stopped working and then claimed PiP

[Hamptons]

I now work part time - 4 days. My job is in a PRU so can be quite high energy.

When working full time I asked my employer to do OH referral so they understood what I can and can’t do. We then built appropriate measures around that which helped. Both sides had clear expectations and I have some protection when I am tired or in pain.

[Bobbydoodle in reply to Hamptons]

Were OH supportive and knowledgeable about what may help or what you need?

[CREATIA6_ in reply to Bobbydoodle]

did not find OH supportive at all

[Hamptons in reply to Bobbydoodle]

yes it was an ex doctor - he was thorough and his report gave me everything g I needed to negotiate appropriate reasonable adjustments. I also went through Access to work to get equipment to help with meetings and admin.

[Tanitani]

 i cant afford not to work so i fake it a lot. When i do something well i make sure everyone knows about it so it looks like im doing something. Try to take rest any chance you got. I also started a new medication that helped tremendously with fatigue and brain fog, it's called saphnelo. I hope it continues to see work. Try finding a job where the more you learn the faster you can do it so you can contribute but with less time than others. Become more efficient.

[CREATIA6_]

Thank you all so much for taking some time to reply to my post. Had OH referral 2 or 3 years ago but did not find it helpful. OH suggested to my employer to give me regular 5 minutes brakes which I am getting once in a donkey year. Fees like I stuck in a loop.

[MusicalFurbaby]

Hi Creatia, most of us would absolutely struggle with a full-time workload! Personally I will never be able to work full-time again due to lupus, I am in too much pain and too fatigued all the ruddy time. Plus, when I have a flare, there’s no way I can cope with full-time. I now work 4 days, haven’t worked full-time in about 10 years. It hurts the hip pocket but it’s wayyy better for my physical, and consequentially, my mental health.

Over the years I have experimented with 3 days (bliss!) which is a bit harder financially. I would love to be 3 days at present, but 4 days is a compromise that allows me to work at a job I love for enough money to see me through. I struggle all the time—working from home for part of the week helps to mitigate that somewhat.

[tracysmilieANU]

HI CREATIA6_, my name is Tracy, I have Lupus SLE, I have had Lupus for over 20 years. I have worked in a full time job since the age of 18. When I was younger I could manage my condition a lot better, I guess as I had age on my side and more energy.

I am 49 now, I had to reduce my hours by an hour-, but that was not enough as I still felt really bad with extreme fatigue, joint pains, flare ups, migraines etc. Now after being seriously ill having Covid and hospitalised this knocked me for six, my health has not been the same ( I might have long Covid). Now going through OH to work at home for 2 days a week.

I can imagine how you feel, I cannot believe OH was not more helpful, they are supposed be independent from the company and make suggestions to make your life easier so you can carry on working. I would go back to HR 5 minutes is nothing. You should of also had a desk assessment, they should of asked you what can the company do to support you.

I know if it is a small company they will try to get away in doing the minimal. If you are really struggling, have another meeting with you HR.

I hope you can get some support.

Keep in touch

[caninecrazy]

Hello,

I work part time now as full time was too much. I do struggle alot with fatigue & pain along with everything else lupus and my other conditions give me. my manager has altered my jobs by allowing me not to work on the tills as fatigue kicks in with in minutes but i work on the shop floor. but as i am getting older i am finding it more tiring but cannot give up work as need the money. but like you i am excellent t hiding my pain x