LUPUS UK

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Finally been retired on ill health aged 43!!!

Hi all, so I've been struggling with sle and APS mainly joints and ridiculous fatigue for a long time now and really struggling with just my 12 hrs a wk nursing hrs. I've been off sick since jan and applied for ill health retirement (I had previously tried to look at it b4 but occupational health nurse talked me out of it saying that I was too young and that it wouldn't b good for my mental health to not b working). I've had a lot of sick time from work which I really hate as I'm the kind of person who doesn't like people being unreliable. In my job too it's not like there was anyone to cover me as I worked in general practice so had clinics booked so was letting people down which made it worse for me.

Anyway after a few months wait and with the full backing of my gp, rheum consultant and occupational health consultant I have been fully medically retired on tier 2. (My gp made me sound like a donkey that needed shooting in his report!! 😂

I was in shock receiving the letter saying it had been accepted as I didn't think I'd get it despite everyone I know saying I would most of them obviously being medical colleague friends.

So if anyone else is thinking of doing it go for it too as I didn't think I'd get it but I did xx

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Sara_A

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24 Replies

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Well done for your perseverance and all your years working as a nurse, it's not an easy job when you've got a full bill of health!

I can understand what your saying about feeling like your letting people down with time of and not getting any cover. We are understand in the emergency department where I work already without me having time off which I find is all too often. But then, that part of you, loves the nature of the job, and helping others and fulfilling a purpose. No doubt you made a great difference to alot of patient lives. X I'm sure as well that when you did work, you went above and beyond.

Thanks for sharing your story of late, sorry it's hard on ya, but we dont know what the future holds. Hopefully it turns out well for ya X

All the best,

Lottie

Thankyou so much for ur reply, I certainly did go above and beyond and most definitely went to work when I really wasn't well enough to. My partner would have to lift me out of bed in the morning and I'd have to take extra morphine and diazepam just to get myself to work for 6 hrs! And I'd have to drag myself to my clinic and I often looked worse than the pts so one of my colleagues once said!! I'd often get into my room and just sit and cry thinking I'm not sure I can even get thru the next few hrs. I started at 10am (due to reasonable adjustments with work) and I often hit a brick wall at 11 ish and need to sleep for a few hrs.

I used to work in children's a&e in my 20's and I loved it, I've always loved my job and i don't think it's quite hit me yet that I wont be doing it again. I will definitely miss my patients from my surgery as I've been there 12yrs so know them all very well so am gutted really to leave them.

I always did my best and more for my patients and like I say I went in when I wasn't really well enough because I felt bad and nobody else was there to do my clinic.

I need to find some things to focus on now that I won't b working.

It's such a relief tho especially as my cognitive function has been so bad and I don't need to worry about that now, I can just walk round a shop all day looking for things that I can't remember but I have all day to do it now!! 😂😂x

Your years of serving humanity as a nurse while having such health challenges leaves me in awe. I know how hard it is for a healthy nurse to manage in these days with short staffing the rule.

Sara_A, enjoy your life as you can retire knowing you accomplished so much.

🤸🏼‍♂️🤸🏼‍♂️

Xx K

Thank you for posting, and well done. I'm sure you will find lots to occupy yourself with when retired, but you can now get creative...after a good rest and a chance to focus on your health.

I've also applied for ill-health retirement at 55, and am having a bit of trouble getting it. Still waiting for the final verdict but feel fairly sure I'll have more hoops to jump through. Any tips you have gratefully received xx

Yes I think once it hits me properly I'll chill out for a bit even tho I've not been at work since b4 jan! But its been a stressful wait.Why are u having trouble? Or do u mean u think u will? Have u got the backing of ur consultant and gp? And occ health if relevant?

When I wrote my part of the form I listed my day from the moment I woke up as that's what occ health consultant advised me to do and base it on ur bad days.

My gp had written an excellent statement as he sees me probably the most or as much as my consultant does (every 12 weeks or so) so I thought it important that I put info into the assessors from him. As usually i think theres just a part for consultant and for occ health but i asked that it got put in as extra as it was so relevant and i think it really carried some weight towards the decision. The deciding person did put in that my gp, consultant and occ health consultant fully backed my application for ill health retirement.

My gp had written info in such as when he had seen me walking, commented on how slow I was ...

So I can probably only say that really as I'm no expert 😬

Good luck it's so hard waiting, I think they got my application on 37th may and I heard back on 15th june so what 2.5 wks once the medical assessors got my application

Hi there. Yes it'll be hard to slow down...probably your mind will play tricks on you and you'll ferociously tidy the house or something! I guess be patient with the fact it's a transition.

I've got the GP's report plus the consultant, and they both supported it. But as I am claiming it from an old pension in a sector I no longer work in, I'm on my own really. They seem to be placing obstacles in my path endlessly. I hope I will get it. It's not much but I am running out of steam....xx

Re cleaning the house ferociously I doubt that very much!!! 😂😂 can hardly muster up enough energy for day to day stuffAhh I see, they certainly don't make it easy for you do they. Well i really hope you get it sorted, it's so stressful. X

All the best. Just hope you’re happy in the long term with your decision? 43 is indeed exceptionally young but then again so what? Perhaps greener pastures beckon?

Well it is a risk yes but the days that I can't even get up the stairs at home or get off the sofa to get my 2 small children a drink or cook them a meal or even make them a sandwich in fact made me feel that it was the right decision for me.Also like I say my cognitive function with the antiphospholipid syndrome is pretty bad I struggle to think of words which has got really hard when talking to people and being a nurse u can't have much confidence as a patient if ur nurse can't even get her words out 😂

My partner and friends are used to me explaining an object 'oh u know what's that thing u use to dry urself after a bath..' etc.. also when I don't even know my age!! I have to ask my partner. Just little signs like this 😂

Its something I have thought long and hard about and have tried to keep going as long as I physically could.

Looking after my 6 and 9 yr old children now will b my job as I feel I have always been too unwell to do a good job or recovering from working!

All the best Sara! Enjoy your early retirement!

Well done Sara, I'm so glad you've got this. I'm a podiatrist and really struggling to continue. I'm self employed so no retirement option but I really don't think working in healthcare is an appropriate career when you're not well yourself particularly with SLE.

I realize what your original nurse said she thought that it was not good for the mental health not to work but that doesn't necessarily mean working as a nurse does it.

You've provided an amazing service to the community for many years. I hope you find life a lot easier now you're not working as a nurse and perhaps you'll find some new and wonderful way to 'work' that works better for you alongside SLE.

Loads of luck for the future xx

I hope this gives you some peace of mind as well as rest which will hopefully means less flares too. Does Tier 2 mean that if you did feel well enough in the future you could again seek something work wise that is more flexible or as hoc maybe? Or is it the retirement package that you agree never to work again?

It is the full retirement meaning that they have deemed me not fit to do anything until retirement age of 68yrs. Just the stress of 'am I gonna feel well enough for my work days' was bad enough and didn't help so hopefully just taking that away should have a huge impact.

Thanks everyone, think I'm going to treat myself to a reclining deckchair as I love to read and be outside with my 2 dogs 😊 x

Enjoy your retirement! I understand the stresses and fatigue you are going through. I also have lupus and APS (and work in the local hospital in the OR and neonatal ICU). It is hard. We are very short staffed and somedays it is long hours (I work full time, but do a lot of overtime too). On the 10th, was found I have yet more pulmonary embolisms (the last year I have had several. Re-Clotted twice on Coumadin, and now Xeralto). The fatigue and shortness of breath is awful. This weekend, I was given two days off for sick time - which gave me a four day weekend and I go back tomorrow. I am dreading it. The chest pain is still really bad. I am so glad you were able to get this, as I get how exhausting it is. Hugs.

Wow!! How on earth fo u cope with all that! With breathlessness too??! I've not worked full time for many years, probably when I was in my 20s I think, I have gradually over the yrs cut down my hrs further and further and then more recently had to start later in the day as it started taking me much longer well about 3 hrs to be able to move on a morning so no way could I start at 8am! I remember working in kids a&e and waiting to start the night shit and just collapsing and being the one wheeled into resus! It wasnt the first and only time, I remember having to be seen many times over the yrs.

The nhs aren't always the most understanding employers or a caring profession I've found but I have to say my current employer has been amazingly supportive over the past 12 yrs and I know I wouldn't have had the same kind of help and reasonable adjustments and support I've had had I worked anywhere else.

If u are still not well u need to rest and stay off longer, I know it's easy for us to say that but u have to look after urself x

Omg it is hard! I get up at 5am to be there 6:30 (my shifts start at 7). My chest pain from the large clots in my right pulmonary artery is giving me a hard time and I suppose that is why I am so exhausted. It is fight to breathe, let alone work on top of that. Some days I don’t get a break or even have time to use the bathroom in my shift. lol

I live in Canada, so really, I don’t know what my options are. I used up most of my sick days (was so proud I had accumulated so many) in December 2020 when I had my large dvt and multiple PEs. I was a month in ICU. When I was discharged, I was given a note from my pulmonologist, giving me only five days off. What could I do?

This time of year is SO bad to be off. There is a shortage of staff already, but now it is the vacations that make it even worse. And for some odd reason…they choose to hire new people now! So I am training/replacing people on vacations on top of it all. And worse still, the casuals they hire, don’t want to work! I have a girl right now. She was supposed to train with me for two weeks. She showed up for only four shifts , and then only stayed on until noon because “she had doctors appointments “. Our shifts start at 7, she doesn’t like to start that early so she told me she will be there at 9:30. She takes two breaks outside, and leaves at noon! Because we are two, I have an increased caseload - then it is all on me. I was scared to call in sick on Friday. I didn’t think my co workers would be too happy with me. But I can’t. My body just can’t right now.

I am dreading tomorrow. Who knows how many days this week I will have to stay late because we don’t have staff. If I can get rid of this chest pain and actually breathe it would be ok! lol

Hey Sara_A, just wanted to send "congratulations" as I know how difficult this choice (and the process) can be having gone through it myself 4yrs ago. I retired on ill health for same reasons (although I was in Social Work, as you'll know, another intensely, never ending, high risk job where, frankly, you do the work load of 3 people in my opinion!).

I was 55 when going through it and thank goodness for the wonderful support from my union. I really didn't know what to do, apart from just resigning, as I was increasingly off sick and when in work having to go home a lot, unable to function. It was hell, as I'm sure you'll empathise with. I got Level 1 in the end - ie deemed unable to work due to ill health before pensionable age. I'm much older than you (am now 59 of course) and so presumably they thought you might be able to work at some point, as you have Level 2?

I have found life just a tad easier since, although it took over a year before the adrenalin started to reduce (and wasn't working for nearly a full year previously when going through the Occ Health process)...

Wishing you a speedy come down from the anxiety of it all.. and the energy to alter the rest of your life accordingly to allow you to get to the right 24/7 life that works for you, to allow you to LIVE, rather than struggle hugely the whole time.

You have made it. So very glad for you, despite the rest ie the reason it occurred, of course!

Best wishes to you.

Hmmm I best check but I'm sure that tier 2 meant that they have retired me fully from any type of work b4 pensionable age? It said that I met the criteria that I was unlikely to improve despite treatment so retired me from the nhs tier 1 and from all work tier 2. I'd best check! X

Yes - I just had a look on a site and this is what it says:

Tier 1

You qualify for Tier 1 if you are unlikely to be capable of gainful employment before your Normal Pension Age. The ill health benefits you would receive are:

the pension you have already built up on your date of leaving

no reduction for early payment

plus the pension you would have built up in the main section of the LGPS from your leaving date to your Normal Pension Age.

A Tier 1 pension is paid for the rest of your life. The increase to your pension under Tier 1 is based on your Assumed Pensionable Pay. You can find out more about Assumed Pensionable Pay in the next section.

Tier 2

You qualify for Tier 2 if you are unlikely to be capable of gainful employment within three years of leaving, but you are likely to be capable of gainful employment before your Normal Pension Age. The ill health benefits you would receive are:

the pension you have already built up on your date of leaving

no reduction for early payment

plus 25% of the pension you would have built up in the main section of the LGPS from your leaving date to your Normal Pension Age.

A Tier 2 pension is paid for the rest of your life. The increase to your pension under Tier 2 is based on your Assumed Pensionable Pay. You can find out more about Assumed Pensionable Pay in the next section.

lgpsmember.org/your-pension...

I am delighted for you. It will relieve the stress on your mind and body. Working in a stressful job with long hours needs stamina and you have done so well to keep going up to this point. I was lost when I gave up work because it was a huge part of my life and my identity but you do adapt and rediscover things that you were always too busy and too tired for. Now that the pressure is off I wish you the very best for what comes next. The possibilities are endless xxx

I think I have been ready for it for a long time in a way as I am so relieved and glad in a way about not having the work as I was beginning to get to the point where I was wanting to check up on myself and question myself (I'm pretty like that anyway). That is my only tiny worry when I get a bit further down the line, who will I be!!? Just 'Sara' not a nurse anymore just Sara, a mum. (Which I'm obviously very proud and happy to b!) But I don't have my identity of 'I'm a nurse' anymore but I guess I can now just say 'I'm a pensioner!!' 😂 at my age with young kids 6 and 9 yrs that may open a few eyes 😂

I just don't have all the worry and expectations that I had when I was working, my annual review at work I dreaded the question what do u want to do in the next yr ....😬😬 I just want to make it thru would b my thought!! I certainly don't want to do any courses or anything as I can barely remember the date today let alone take any new information in on a university module 😱😱! I thankfully had very understanding bosses who never pushed me and were happy with me continuing the way I was.

Thanks everyone for all ur messages, I hope to have a long and happy retirement 🤣🤣🤭🤭

Now you will have time to spend with your children which is great but the very best thing is that you will no longer have the exhaustion and anxiety of a stressful job. Being sick is in itself a full time job xxx

Congrats Sara 🤗 It must be such a relief for you!! I too was a nurse in mental health..I left the NHS in 2000 after 18yrs service n I've never looked back!!

Now you can focus on yourself and your family which I found really difficult as a working parent before I was diagnosed with lupus..I can only imagine how much of a struggle it's been for u.

All the best for the future 💜🌈😽😽xx

Hi Sara I’m so pleased for you - I had to give up work 6 years ago at age 48 and it was the best decision and you do adapt , I have a better life now , I took up knitting and have 2 dogs to keep me company when partner is not around. It will be less stressful life for you now with out having to be thinking about work.

Enjoy xx