I keep missing work and feel really bad.

[eescvc]

I was diagnosed in January, and since then I've had 6 days off due to flares or related illness. Before this illness I was NEVER ill, never missed work. I feel so guilty missing work that I spend the entire sick day stressed and anxious that I am letting my wonderful employers down. I've listed the days off below:

MONDAY 5th February 2018- Symptom flare

WEDNESDAY 7th March 2018 - Symptom flare

THURSDAY 15th March 2018 - Medication side effects

FRIDAY 4th May 2018 - Symptom flare (SLE)

Thursday 10th May 2018 - Viral Infection - Hospitalised

Friday 11th May 2018 - Viral Infection - Recovering at home

Do you think this is an unreasonable amount of time off? I am super worried that my health hasn't really had the chance to improve yet - I only started Hydroxychloroquine the last week of Feb, so it's only been just over 2 months. My work are understanding, but I know that if I get to a certain amount of absence there will be a problem. I just don't know how to limit my time off - I'm already going in on days I feel I shouldn't.

[Penguintaz]

Hi Eescvc

Sorry to hear you've been suffering so much lately, I really hope it is able to settle soon and you can get on the road to recovery!

On missing work I really know how you feel. I was doing an apprentaship when I started being ill (pre-diagnosis) and was in and out of hospital for over two months before a proper diagnosis. However I kept trying to go to work and honestly it probably made me worse. I did get bored at home after having about a whole week off and thought surley I am well enough to go in but felt so tired by the end of the day! I ended having to leave this job as I was struggling to do full days and the quality of my work dropped probably because I did not allow myself enough time to recover!

So my point is don't feel bad and take the time you need, if you try and force yourself back you'll either make yourself more sick or the quality of your work may be poor upsetting an employer more than if you take an extra day off or two!

[eescvc in reply to Penguintaz]

Thanks Penguintaz

It sucks to not be able to do the things we want to. I'm sorry to hear you had to leave your apprenticeship because of your health.

Luckily my employers are very understanding - I just sent them an email explaining everything in detail and they just wished me well and said they were looking forward to my return, when I feel up to it.

Thankfully I have the whole weekend to recover now and my wonderful partner here to look after me too!

[Penguintaz in reply to eescvc]

Thank you, luckily I was able to finish my qualification so that looks good on my CV!

Great to hear may you have a restful weekend Xx

[whisperit]

Sadly, our illnesses don't feel that they are bound by any legal agreements. Someone should take them to court.

Bear in mind that every employer has to accept that sometimes, their staff are properly sick. It's only when people are taking advantage or feigning illness that they have reason to get annoyed, and I'm sure yours understand that you are completely genuine.

Your priority right now is to take care of yourself and allow your body to adjust to the new condition and your new meds - as you say, it is still too early to expect this to have happened yet, so try not to fret. x

[eescvc in reply to whisperit]

Thank you. Fortunately they are very understanding and it is my own issue with feeling like a let down.

[whisperit in reply to eescvc]

Sure. You can only do your best, and every one of us has times when we have to prioritise our health, and ask for help and understanding from others. If you want to think of it this way, you could see it as you providing others with the opportunity to be kind and supportive - it's what humanity is all about, after all. x

[JimCWalker]

Hi. Where I work I'm allowed three periods of sickness in a year before triggering a disciplinary meeting. Please check that this isn't the case for you. If you find that it is then only return to work when you are feeling significantly better and symptoms are stable as possible.

At present I'm on my forth week off with two more to go. Work are understanding as the time off was due to a first seizure and the time taken to see a neurologist. I'm currently not allowed to drive/cycle or work alone which is somewhat problematic in my role. When I do get back the plan is to see of HR are prepared to register SLE as a disability so as not to trigger disciplinary action when flares happen.

[eescvc in reply to JimCWalker]

My company gives us 4 weeks paid sickness (full pay) in any 12 month period, so I think I am quite lucky with my employers in that sense. Also fortunately I am already considered as disabled by my company and have been given workplace adjustments accordingly.

I think my issue is more that I myself worry I am letting people down. The company have been nothing but lovely really.

[maye1 in reply to eescvc]

I know how you feel. Someone once told me that it is a common characteristic of people with Lupus to be quite hard on themselves - she said more so than other AI illnesses. I was beating myself for being off work and understanding what she said helped me put things in perspective; this may be another symptom from Lupus that I’ll have to figure out how to manage. Try to see it that way and see if you notice a difference with giving yourself permission to put your health first.

I’ve started meditating daily. Helps me.

When you’re ready to go back, ask your employers if there is the option to work part time from home. Not necessarily permanent, just until it’s better controlled.

Go easy on yourself!

[Zoekat in reply to JimCWalker]

Hi

I have just read this and it sounds like the role I am in .

I have hit the trigger point this week and I am expecting action .

Did your HR recognise this as a disability?

[ChantelF]

I have nothing to add really, just that I UNDERSTAND!

[eescvc in reply to ChantelF]

Thank you

[suebeedoo]

I understand how you feel, unfortunately I had to give up working as it was all to much but since then have felt a bit better as not putting so much pressure on myself, and like you have only been taking Hydroxychloroquine since end of Feb the only advice I can give you is look after yourself and rest as much as you can. Love and gentle hugs Sue xxx

[eescvc in reply to suebeedoo]

Thank you, I need to stop being so hard on myself. No one views the situation the way I think they do

[MandaH1]

I started taking hydroxychloraxine and it made me feel worse. I needed so many days off as I kept getting awful colds that lasted months.

You’re lucky that you have nice employers. Try not to stress so much. You haven’t had that many sick days.

Can you take up some sort of relaxation to help you de stress like CBT or meditation?

X

[eescvc in reply to MandaH1]

I used to do intricate 'adult' colouring in as my de-stressing technique. It really helped me to unwind. But my finger joints are so bad lately I can't do this without instant pain, so I'll have to look into other calming techniques I guess.

[Annethlowen]

I'm sure that your employer would understand if you explained what lupus does to the body you might not need to worry. You haven't had too many days sick and they know it was not what you have done in the past.

[eescvc in reply to Annethlowen]

Thanks, I emailed them shortly after posting here with details of updates regarding my health, medications, hospital admission etc. They are always keen for me to keep them in the loop, so this was a good chance to do so.

[baba]

Have you read the Lupus UK booklets:

"I Want to Work" and

" When an employee has Lupus" ( for employers).

Both available for download, ( plus many more informative leaflets), from

lupusuk.org.uk/publications/

[eescvc in reply to baba]

Thanks, I have read these and sent my employers a copy when first diagnosed

[LouLamb]

May I ask what you do ? Your employee sounds great 🙂

[eescvc in reply to LouLamb]

I'm a graphic designer

[Milliecox]

Can I just back up baba who suggested the booklets - could your work as a graphic designer be done flexibly ??Many people with SLE find that having control over how they work enables them to accomplish as much as possible often being able to do their job completely but in a different way? You are quite newly diagnosed - often more unstable earlier on?

All good wishes

[eescvc in reply to Milliecox]

I've already had some major changes at work recently - they removed a role which was 40% of my job because it was too hard on my health and now my colleagues are all taking this on between them. It's just still very early days so I need to be more patient I think

I'm feeling much better after a restful weekend and am looking forward to a fresh week.

[DJK99]

Hey there - I just wanted to add to all these lovely responses that I totally empathise. I have been agreed to work at home 4 days a week - could you do that, considering your role? Also I was on Hydroxychloroquine for about 6 months but had to come off it as had very bad migraines with aura(lights) increasing to nearly every other day - so debilitating - and also extremely bad sudden diarrhea - it wasn't for me... but I hear it can help with the fatigue which I would love to get rid of. The benefits should start to kick in now I think... but we're all so different. Please try not to worry about being off sick..easier said then done i know - you are doing your best and seems as if your lovely employees are totally on board with supporting you. All the best to you... D

[eescvc in reply to DJK99]

Problem is I HATE working from home. I've been at my company for 3 years now, but the first 2 I was freelance and had other clients, so I was a mix of in-house and working remotely from home. I gave up self employment to work with my company as an employee because working from home just made me feel so much more isolated.

Just after starting this thread I emailed my relevant managers at work explaining everything new in detail and they were all very sweet, which really helps. I'm looking forward to going back tomorrow and starting a fresh week.

[DJK99]

Hello again - I am so sorry - I sent that reply in a hurry and it wasn't until later on in the day when I was thinking about you and all of us that I remembered you'd already said you don't like working at home. So I wasn't very helpful! I really like working at home so it works for me,as far as that goes (ie brain fog, exhaustion and the rest etc!). I go in one day a week now, as agreed with work. I do hope you are able to continue doing what you love, in the way you love doing it. I for one I have just requested a drop to a 4 day working week - can't really financially but I was just beign off sick a lot or feeling really bad when working. My job is out and about in the community at times - and being in the office can be just too noisy and bright.. I always end up with a migraine and sometimes go off sick afterwards. I hope you work environment is suitable.. perhaps you could go off and have a lie down somewhere now and then? And keep it natural light.. the lights in my work drained the life out of me.. and my eyes.............. All the best, D