How did you know whether working was no longer plausible?

[eescvc]

Hi,

The past couple of years my flares have become increasingly severe and increasingly frequent. This combined with unavoidable stress from my home life (most of my family are severely mentally ill, neuro diverse, or addicts, or just generally have high care needs so even when I'm not working I'm still working in terms of caregiving). This has left me being signed off sick for a lot of the past year, and most recently the past few weeks and months especially.

The problems at work is if I am off sick for 2 weeks, no one covers my work which leaves me playing catch up and inevitably making me more stressed and more ill and then having to take more time off again before the cycle repeats itself. The company has lost a lot of staff so there's not really the leeway to avoid this set up.

Medically, I'm constantly being put up on higher doses of steroids and tapering down again, but there's not much else that can be done. I'm on mycophenolate and was on methotrexate previously.

I'm just very stuck and wondering how you decided (if you did) that working was no longer plausible for you. I've already cut my hours significantly. I live at home with my parents but they are very low income and rely on my income to keep us afloat.

I am just completely running on empty, miserable, exhausted and sick of being in pain. Any advice is very welcome.

Thanks.

[CecilyParsley]

Bless you, you are in such a difficult situation and it is making your health worse. Stress is so destructive when you are sick. I became very sick suddenly and never worked again, that was over 12 gears ago. Initially it was so hard, we incurred debt which we are still paying off but there are benefits that you can claim which will help you. ESA in the support group and PIP. You will not be rich but at least you will not be destitute. You can also ring your local Adult team in Social Services and request a carers assessment. They will come out and listen to all that you do for your family and look at your needs too. I asked for a carers assessment for my husband who was trying to work and look after me, they then arranged an Occupational Therapy assessment for aids and adaptations which has made my life so much easier and I was awarded nine hours care a week. My carer takes me to hospital appointments, and social events, helps with my hair etc which gives my hubby a break too. It was life changing for me and it sounds as if you really need some help. Also can you be referred to Occupational Health at work? They might recommend I’ll health retirement so getting your pension earlier. I wish you the very best of luck. Please let us know how you get on xx

[MrsMarigold]

CecilyP has given such great advice. This group is very supportive. Plz come back and let us know how you are. Best, Titters

[cathie]

I decided when my head of department was unsympathetic when I excused myself from a conference in California on a 2nd January. Then I failed to get a research grant I'd hoped for and there was another (even less understanding) hod. I know I was in quite a privileged position and I did have a small pension, but it was hard. Since then I have used my work experience in different ways, and have never regretted it. Good luck, Cathie

[svfarmer]

I’m so very sorry your going through all this at the moment - sounds like you have a very tough job which brings a lot of stress, you need to look after yourself and get lots of rest - I had to give up work 5 years ago - I’m 53 - I became very I’ll with lupus and it all came to a head when I saw my rhemy consultant who is just the most lovely sympathetic man, he was asking how things were and I just burst into tears , I was in so much pain with my hands and feet etc, he advised me to give in my job and so I did, I get PIP now which helps. It took me a long time to come to terms with my new life but now I’ve embraced it and giving up work is the best thing I did - I wish you all the best x

[PositiveT]

Hi eescvc. Firstly here is a great big virtual hug to let you know we are here for you and understand.🤝You are going through extremely difficult stresses and I am so sorry you have so much on your plate.

In answer to your question I was diagnosed in the early Spring. I too was a carer for my late Mum who sadly passed just before the pandemic. Mum to two now young adults. So I know a little of what your spinning plate life is like.

It is supporting to hear that svfarmer is a similar age to me and gave up work. I turned 50 this year and am currently signed off sick from work. Occupational Health are involved to see if I can get ill health early retirement. Although I only work part time I enjoy my job. I am now grieving for my job as I have realised I can no longer do it to the high standard I was. But looking forward I know leaving/retiring from work is the best option for my body. It's a tough decision but my pain and flaring would not allow me to do the job. Yes it means adjusting finances etc but I am a strong believer that we must listen to our bodies and follow it's lead. It is telling me to stop. So stop I must. Since accepting the decision I feel a huge weight has been lifted from my shoulders and by making this positive choice I am now looking forward to the next chapter of my life.

I hope my honesty helps you and I wish you all the best in making your decision

Please let us know how you get on. Oh and if you have a union join it, they have been a huge support to me guiding me through the process.

Take care of yourself, there is only one unique you.😘🌻

[Fila62]

Hello I just logged back onto Health unlocked haven’t been I touch for a long while and your post was the first thing to catch my attention because i had the same problem and i tried to keep working although the support wasn’t there; and i hasten to add i worked for the NHS and for all the caring we do for others the NHS is unforgiving towards their staff (sorry) to all those who carry a banner.

My advice to you would be to revise your medication along side your consultant I say this because steroids have a devastating affect on mood and energy, I had to refuse to take it because i was bloated and lethargic and heavy.Please speak to your doctors but also be brave and make a considered decision for your health and wellbeing.

I know this is going to sound patronising but I don’t mean to be try Yoga and gentle exercise it works it clears your head and you just feel better .

Get your energy back and i am of the opinion that the joint pains and general feeling of stress which becomes a cycle will reduce.

You can apply for PIP even if you are working it may subside your reduced pay if you get it but the application can be a very stressful process in itself so get support for this.

Good luck and put yourself first Doctors can only prescribe what they think will help you; you have to let them know when its not.

[Froggie70]

Hi there. First off I’m so sorry to hear of all that you are going through, that would be a lot for anyone to handle regardless being ill themselves so please don’t be hard on yourself. I don’t know if this is possible but could you work from home, even on a temporary basis until you get your meds sorted? The reason I ask is that it has been a transformation for me. I was in so much pain that by the time I’d travelled into the office I was shattered and felt like I’d already done a days work. My attendance record was appalling and HR/Occupational Health were getting to the point that they couldn’t do much more. We are a small team so like you the work was piling up. It was a vicious circle. Now that I’m working from home my attendance is so much better, not brilliant but enough that it’s not an issue. I know this may not be possible but if it is it could give you some breathing space to see if new meds could bring your pain under control and then allow you to deal with everything else. Take care of yourself, sending you hugs and best wishes. X