How do people cope with lupus fatigue and full time employment?

[jennawings]

I have just been diagnosed with SLE and will be put on a prescription of hydroxychloroquine. I am 24 years old and a full time teacher and I cannot afford to work part time. Extreme fatigue is causing me issues with work and being able to concentrate etc due to brain fog. Please can anyone help and give me advice?? I need to know that there is a way to be in full time employment with lupus.

[AlisonM]

I've had lupus for 7 years & have taught for all that time (primary school) it's definately a challenge!! You need to prioritise, discuss with your head teacher what they can do to help you. I'm in Scotland & we have non contact time, so mine was in middle of week to help & also in a block of 2 1/2 hrs instead of split up- means I could go home if need be. I also when flaring go home with a pile of jotters at 3, sleep for at least 1 hr then tackle my paper work then. When feeling fatigued I generally teach sitting on my twirly chair & move from group to group & get kids to come to me!! Peer marking is also good! I've also sat children down and told them "mrs Marshall isn't very well today & she needs helpers.... To write on board if hands are bad, get things/tidy up etc" even the worst of classes respond to you being a bit human & not well!! Maybe a list on board of things to do would help brain fog- might use that too- I'm on maternity leave just now & baby brain is worse!!

Take it easy- know your limits. If I'm off work, I've learned to take at least a week, same absence on your record & it's a full on job we have. Maybe get some leaflets from lupus uk to explain to boss, if they don't get it. I've been really lucky that my management team is fab.

Sorry if I've rambled- hope any of it is useful!!

Alison xxxx

[dgleds]

WOW! I wish you the best...I'm an early childhood educator, and I'm not working right now...I'm not sure I could go back to it now...

[Hidden]

It's so sad to hear this, every time I hear it. I tried to carry on as normal and managed it for nearly eight years, with a couple of breaks. I am not working now (I'm much older than you, at 53). Alison M's advice is good - you will need the understanding of your employer, and you need to learn to listen to your body. If it's telling you NO! - then it is a good idea to listen.

On the plus side, hopefully the hydroxychloroquine will kick in soon and it should really help.

[Heatheric]

I worked full time until end March and was lucky enough to get redundancy from the NHS. Because of my age (58) most of my redundancy could go into my pension and so I now have my pension as if I'm 60. I know that's not much help to you at the beginning of your career, but talking with your employer is the only way for them to understand and make 'reasonable' adjustments to your work. AlisonM's reply looks really useful and hopefully will help you. I had a long journey to work (1.5 hours driving) but was able to negotiate working from home 2 days a week so I could spread it out. Not so easy I guess with teaching - but how about using Skype occasionally? All the best.

[everab]

Hi, I'm 33 yo, have had lupus for the last 13 years. I'm working full time and studying a part-time Master Degree. I know each case is different, but you can do it

My main advice is learn your limits and instead of fighting them, work around them. Some days are going to be bad, and you will only have energy to work and sleep. That's ok, other days will be better. Plan ahead for the bad days, i.e. have a back-up plan to take it easy on the bad days.

I nap in the middle of the day helps a lot.

Hydroxychloroquine takes some weeks to kick in but it will help with the fatigue.

Try to do some light excercise, I know it sounds crazy when you are exhausted, but it helps to stop the flare.

Good luck!!

[swhite100]

Well done for being determined to carry on with full time work. I was diagnosed a couple of years ago after battling for five whilst not knowing what was happening (thank goodness for the Rheumatic Hospital in Bath). I too am a teacher (although age 43!) I have had to make some changes in my role but it's been worth it and I'm no longer finding that I am off for long periods when I have a flare. I'm currently taking a couple of days off on the advice of my specialist lupus nurse as I'm struggling a bit at the moment, but it is this type of acceptance and occasionally 'giving in' that enables me to carry on. This year I have dropped a day so that I can finish a Post Grad SPLD course but next year I plan to go back to full time.

I've always tried to be very open with my employer - I have found this helps as they can then begin to understand the illness. Thankfully, they have responded positively and as a result made some adjustments e.g. I no longer have to do duties, extra-curricular clubs etc (the Equality Act and my union provided good advice in relation to this). I also have practical support after my OT suggested applying for Access to Work. I did, and it has been brilliant! The Government pay for a support worker to help me (primarily for lesson preparation - up to 10 hours per week) and following an A to W assessment, my employer has provided an adapted chair, mouse and keyboard, and voice recognition software (the cost was shared between them and A to W).

One other piece of advice is to always consider 'pacing' (make sure you factor in regular breaks and think 'slow and steady'). This is really important, however I'm not always good at taking note of this, hence why I am off at the moment!

Good luck - and as Maggie says, listen to your body but also seek advice and guidance from the professionals. Finally, remember....it's not long until the Christmas holidays!!

Sarah x

[Carcrashgal]

I can't add any more to these excellent replies, except to reiterate: talk to your employers honestly, pace yourself - particularly important on good days!; like Sarah, I'm having to force myself to do the same - and get as much support, physical, emotional and personal, as you can: once those support systems are in place, you'll find that's one less thing to worry about. If those around you understand the illness, it'll be so much easier. I've found people are generally willing and happy to help out in such circumstances (I myself have just been sent home from the office because my boss thought I tried to go back too soon after pleurisy. Of course he's right - and I am so lucky to work for someone like him. But he did that because I've talked fully and frankly about what lupus does to me.) Be strong in heart - and all the luck in the world. Let us know how you get on. Jo

[Hidden]

I have been on Hydroxychloroquine since June and it is having some effect. BUT I am having to learn to pace myself. As everab says it is important to plan ahead for bad days. On the good days don't try to achieve more than is needed because you will pay for it later. I work full-time as a university lecturer and I am having to become much more assertive when asked to take on extra stuff. I love my job and have always been one of the first to help out with extra projects etc but I am having to step back and keep to my agreed workload.

[seekingfreedom]

Fantastic post, thank you. As a mum of 3, I also work for the NHS it's nice to know its still achievable to keep going albeit with a bit of tenacity and determined ness. I start steroids and hydroxy 2 weeks today, so hoping to feel more human soon!!

[jennawings]

Thanks guys for all of your advice. I started to feel exhausted this time last year but I was an NQT and relocated down south and assumed that this is what teaching is all about. In January I went to the doctors who I could tell thought I was being a bit pathetic. I knew something wasn't right and was persistent and in February I was signed off for a week with exhaustion just before the half term. Found it really hard to cope but struggled thorough to the summer holidays and passed my NQT year.

Since returning to work in September, I have been much better in pacing myself and calling it a day and going home when the bell goes. I am a secondary school teacher so my non-contact time is spaced out over a two week timetable. However, I feel as though my life evolves around work because when the weekend arrives all I can do is sleep or feel rough with the other symptoms. When at work, I'm fuelled on adrenaline which gets me through, I have non at the weekends. I have always taken pride in the fact I never take work home as I find I am not very good at doing so, maybe I'm going to have to adapt myself and bring work home?

I had parents evening on Tuesday which meant I had a 12 hour day at school and despite it being the one day in my timetable that I have three hours of PPA I had to leave work at lunch time yesterday due to extreme exhaustion and subsequently I'm off again today feeling bad because I'm now behind on my planning and marking.

My head teacher is an understanding lady where health is concerned amongst her staff and I sent her an email explaining my situation and asking if there is anything that can be done to help me and I asked about occupational health. I am awaiting her reply.

What is it that access to work does for you? Do all lupus patients get a lupus nurse? I've been told that I only have a mild form and I am going back in six months to see if the hydroxychloroquine works.

Jenna

[DonnyJM in reply to jennawings]

Hi Jenna,

Don't be fooled by the term 'mild lupus' this just means that at this point your SLE is not affecting your main organs significantly. It does not mean that your symptoms are mild in any way. So your suffering and struggle is real and my no means mild.

It's a term that is not really fit for purpose and often misinterpreted.

The advice given here is sound - you have to try and pace yourself. When I'm feeling better I try to get ahead of myself and do tasks that may not be needed for a while if possible. Also don't be scared to ask for help when you need it.

I am also recently diagnosed and it does take time to get your head around it all so watch out that you don't start to get down - we are always here to listen.

Lupie hugs,

Don

[jennawings in reply to DonnyJM]

Hi Don,

Thanks for your response and I'm glad you are able to understand how I feel. It makes a refreshing change because as much as my friends say they can imagine what its like, I'm sure they think I'm exaggerating half the time because "everyone gets tired with work" or "try not to think about it, it just makes it worse". Really gets on my nerves!!! Arrrrrgh. Rant over

[DonnyJM in reply to jennawings]

Hi Jenna - this is the place to rant as we do understand. My mum has had Lupus since I was born and so I thought I understood what it was like but I can say that no one has any idea what it is like unless you have it.

[lennox]

I worked full time Untill last year I had to many attacks and was advised by my doctor to lower my hours, which I did to 3 days a week that was fine for a while, but started going down hill again and was put on a warning at work, I went via occupational health and now work 3 days a week from home, which at the moment is all going good, and I can swap days if I'm having a bad day, I don't have that rush to get up ready and out the door, as u know lupus takes the energy out of u, every lupus suffer is different, I had a good run for 7 years the last few years has taken it out of me, it's controls my life more than I control lupus now and that's the hardest thing I have to deal with, but do what you can and rest as much as possible and most of all listen to your body, when it's telling you to slow down do so, or you will hit the deck with a bump,

[Hidden]

Google the spoon theory i think it may help you alot. Iv found lucozode orange helps me a bundle when my brain just wont function. I'm 21 and don't work, used to work in a nightclub but my pain got so bad i couldn't stand for long and lifting heavy crates up flights of stairs was just impossible. You have my utmost respect for carrying on working but please please look after yourself. As for the "mild lupus" diagnosis i wouldn't listen to them, i don't think iv ever spoke to anyone on here that thinks lupus is anything but vicious and unpredictable! That's not to scare you love its just so you know you are not being pathetic you are a survivor like all of us. If you have Facebook then there is an amazing woman on there called sher who has a page called lupus and me, i think it has about 127 likes, its got a blue eye as the picture and her hand as the cover photo. She has helped me no end and i talk to her every single day, she's on here too if you can find her I'm sure she could help you all the best x

[jennawings in reply to Hidden]

Hi Loubielou23,

Thanks for your responses to all my questions. I really value your advice and I am sorry that lupus has you at a young age. I thought I was young getting it at 24! I think when they say mild form they mean that they don't think it will develop into anything more sinister however, to me it is definitely not mild because this fatigue is killing my right now (obviously not literally!) really struggled past few days so I think I I'm a flare(?). This is all so new to me and still trying to work it all out

I'll have a look for the Facebook page. Thanks again x

[Hidden]

If ya need anyone to chat to I'm on lupus and me's statuses most of the time, drop me a message x

[Purpletop]

Hydroxycloroquine will help with the fatigue once it takes effect - when mine started to work after 6 weeks of taking it, it was like I woke up to life again. Good luck.

[tallytutu]

There is hope jennawings , as purpletop says once the hydroxy kicks in life becomes a bit more 'normal'. I started it in sept and it has worked really well but takes a while to work . I still have to deal with the other symptoms with pain relief and anti inflammatories. But I feel in the land of the living now. The thing I hate the most is the dreaded PACING myself. I hate it as I've always been active and I've been battling with myself trying to balance the energy I have. It does make you prioritise and that's difficult as I feel as if the energy I have seems to be dedicated to work and not a lot of play at the moment! But there's lots of people on here who have lots of helpful advise where ever you are in this frustrating condition. Best wishes x