LUPUS AND THE AGONY OF HAVING TO GIVE UP MY JOB

[eunidarling]

Hello Pals

Well. How do l start!

After 17 years of working and living with SLE plus other associating conditions, it looks like l have to give up on my job! I love my job and it helps me psychologically as well as having a work life balance. However, since January 2016, l have not felt better since a very bad Lupus flare. The pain left me immobile: Wow, it was the worst!

I am currently on long term sick leave and it is not likely that I can return to work. Maybe I should not be complaining as I have had the chance to work for 17 years and I am well aware most of us are unable to work with an SLE diagnosis.

However, I need your help.

My dears, l tried my best but for once I feel defeated temporarily. I went through all the alternatives to continue being employed: Went from full time to part time, Flexible working, Access to Work Assessments, Working from home. etc etc, and l have very supportive employers.

Even with the excellent treatment, my determination and positive attitude, this damned Lupus flare is holding me tight and wants to hug me even closer and cherish me as a friend. I really do not want to be its friend (Don't we all) However, it can be very persistent and clingy! I say that, because, since January 2016, even though l have been with, the most effective Lupus Team, on Rituximab infusions, high dose steroids plus other medications and it is still upsetting my life! A truly unwanted friend!

How dare lupus! If I could eliminate lupus by every painful process ever imagined on this earth I would!

Now back to my work issue.

I feel so disappointed with the current phase I am in. I never thought the possibility of losing my job will cause me such agony. I have been kept awake thinking about what other options to take and about my plan B and C when I feel much better.

I would have been off sick for a year come January 2017 and I am wondering what next?

Do I take a redundancy offer? Which is not favourable in the amount being offered. The only good aspect with the redundancy route is that I could find another job when I am much better. I am a very young 50.

Looks like I might be taking the route of a medical retirement if my circumstances does not improve.

I am wondering what are the processes of a medical retirement?

Any advice please if you have information or have been through it.

Also especially in this climate, this is the wrong time to be applying for benefits and all its associated stress. I am so angry and perplexed at this monumental decision before me. I feel so lost and uncertain about the future.

I know others have been through making this life changing decision and I will be very grateful to know how they coped during this difficult period of their life and any information on medical retirement and your experiences.

How dare Lupus!

Yes, how dare you LUPUS! I was once a very cute babe (l still am though) and loved high heels, loved matching them with my outfits. Now l line them on my staircase and smile because one day I will wear them! So far l find every alternative not to let lupus defeat my fashion sense and life.

I have every kind of wig for my nice cute bald head. Got a major shock this week when a really nice guy told me my wig was falling off! imagine! (He was real cute as well) I was in the midst of a hot flush and did not even notice! However, I will soon get some strong elastic bands to fix that! As well as how to ventilate my scalp. Perhaps a nice flower hair accessory that actually works like a fan. Oh dear!

I think I am ranting on now....

Hoping to hear from you pals soon.

I wish you all a very good day

Kindest Regards

[Chris21]

Hello,

Wow! I love your attitude to life. Yes lupus is the biggest nastiest friend you can have I hope you can shrug it off soon.

Unfortunately I can't offer any guidance on the finance as I've been fortunate not to be in this position, have you tried lupus uk they have some great booklets with useful advice.

The most important thing is to get your health back on track because without that you can't contemplate working.

As for your wigs, I think a huge flower would look fab just make sure it's not too big, otherwise you may find yourself flying in the wind!

Hope you find some answers to your work/retirement predicament.

Thank you for making me smile with your demination.

X

[eunidarling in reply to Chris21]

Hello Chris21

I was smiling as l read your reply. A much needed smile! Thanks dear.

I am definitely going to shrug off that unwanted friend. Already planning joyful activities when I feel better. I will keep you updated. Get ready for laughs!

Being serious, l do agree with you that l should get my health back first and not worry so much about work.

You have made me feel much happier today and I do like your spirit as well. I really did laugh reading about flying in the wind. I am picturing myself. (Smile)

Thanks for making me smile as well.

Best Wishes

[pixiewixie]

Dear eunidarling, it sounds like that unwanted bullying supposed friend "Lupus" might pretend to like you but you know the real truth!! That Lupus fiend will never keep your spirit suppressed! You are a few steps ahead, planning, thinking & realising the uncertainty of a future with lupus. I had to stop work ... eventually went on ESA, (yes that's another story). Have occupational therapy discussed your illness & sick leave with you etc. Sorry, I'm afraid I am not very knowledgeable on the aspects of redundancy or the process of medical retirement. However if you have to leave this job because of health issues after trying so hard to stay would the next work role be any easier? Love your wig tale! It certainly highlights your ability to 'get on with things'! You certainly are not ranting, merely expressing an endearing personality. I know how hard it is to watch what seems like the rest of the world zooming past whilst I creep behind! Yet everyone has issues, that is the nature of life ... Oops ! now I am ranting. Any way I felt I wanted to respond to that energy I found in your post! Looking out for your special patent of that flower accessory that you mentioned .... All the very best, have as good a day as you possibly can!! Pixiewixie

[eunidarling in reply to pixiewixie]

Hello Pixiewixie

Thanks for your heartwarming reply. I could not do a dance standing up so I did a little jig sitting down. 😀

I am sorry you lost your job and had to go on ESA. It will help me stop fretting overly and know brave pals have also experienced it. I have heard horrible stories about the process of claiming ESA! So l can definitely imagine your story.

Currently waiting for a referral to Occupational Health and that should makes things less confusing for me. Honestly, you are right about my next work role as l fought so hard and there were numerous days when l knew it was a matter of time. Like the numerous occasions when my mind went blank during a conference or could not find the words! I just used to tell funny stories to mask the real issue of lupus fog! If only they knew how much l was panicking...However, that is another story!

l will update how things go and thanks for sharing your story with me. It meant a great deal.

Lupus will definitely not suppress us!

Not when there are: Family, Friends, Pets, Fashion, High heels, Nice Food, and a flower patent pending! Plus lots more...... and advanced medical options. We will overcome!

Love your spirit and energy as well and thanks for lighting up my day.

Best Wishes

[Hidden]

Hello,

I am so sorry to hear that you might have to give up a job that you love.

You might want to speak to your local Citizen Advice Bureau (CAB) about the process of leaving the workplace and retiring on medical grounds and issues around the financial support that you could receive. CAB should be able to offer homes visit if you are to unwell to travel to see an adviser. Your employer/HR Department should also be able to support you in the process and exploring your options.

Here is a really helpful source of information for navigating early retirement because of illness and whether it might be right for you - moneyadviceservice.org.uk/e...

Do not hesitate to apply for any benefits and support that you could be entitled to. You can find more information about benefits on our website lupusuk.org.uk/benefits/

If your condition improves and you believe you could return to work this leaflet might also be useful to you lupusuk.org.uk/wp-content/u... .

I wish you all the best.

[eunidarling in reply to Hidden]

Hello Fabienne

Thanks for your much resourceful reply and welcome to our great online club. I am much pleased to have you on board.

I am definitely going to contact my local CAB office this coming week.

My employer is really supportive and we have all been hoping l get better as l always get better and return to make them laugh. However, l have to be realistic regarding my current circumstances.

I have an occupational Health appointment coming up and as advised will use that to explore my options.

I am very grateful for the very useful links to resources. Thanks so much.

Once again welcome to the Club.

Best Wishes