LUPUS UK

Struggling with work

Hi all,

I'm a 43 year old woman and was diagnosed with MCTD/Lupus with ME symptoms last year though I believe I have had these conditions since 2009. I have always been a busy person, have always worked and studied and am a self employed musician.

I'm finding my working life extremely hard. I work as a support worker forva women's aid domestic violence charity. I am a survivor of DV myself and do believe the stress from this contributed to my illnesses.

I am constantly exhausted with fatigue to the point of tears most days. My work environment is poor, the lighting is terrible and it is warm with no air circulation. The job can fe either painfully slow or stressfully busy. Each day I return home and sleep for a couple of hours. I feel I have no quality of life and am at the point where I'd rather leave my job and not have a wage just to feel human again!

My family can be talking to me and though I hear them speak, I can't understand what they are saying at times - it's really strange. I also have developed tinnitus which is driving me nuts. I have constant pain in my joints and my muscles in my legs and back seize when walking.

I don't know anybody personally with these conditions and I feel really alone right now. It's so hard to explain symptoms and I often look good and rosy cheeked with the lupus rash I get when I'm heading towards a flare.

Has anybody else experienced this? I'm getting very depressed and anxious and so very frustrated!

I'm currently taking Hydroxychloroquine and Sertraline with asthma steroid inhaler and occasional prednisoline and antibiotics for recurring chest infections and pleurisy. I've had five chest infections so far already this year. I'm past myself!

Thanks in advance for your help x

21 Replies
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Hello and welcome SaraDee,

It sounds as if you have a lot to deal with. I wouldn't be at all surprised if DV stress contributed to triggering off your auto-immune problems. I had a serious accident a few years ago which I suspect may have made me vulnerable, but only really got properly ill after a period of intense stress at home and work. And I certainly recognise the frustration of looking well but feeling terrible! My most serious problem was interstitial lung disease, and between that, extreme fatigue and joint pain, I had to take ill health retirement earlier this year. Luckily, the hydroxy and prednisolone I've now been taking for a year seems to have dampened down my lung inflammation a great deal.

Anyway, I have found this forum very helpful. Hope you will stick around x

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Thank you whisperit,

I'm glad you are getting better management of your condition. You must have been through such a trial - is retirement suiting you? I do hope so. Nothing is more important than your health - but choices are so difficult aren't they.

It's great to have found this forum and the opportunity to help and support one another x

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Thanks, SaraDee,

Well, retirement is suiting me in that I couldn't manage to work at all at the moment. A year ago, I had 3 jobs, and I was hoping to hang onto at least the easiest one - but even that would be too demanding right now. So its all about making a completely new life! Nothing stays the same....hope things improve for you soon x

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I'm so pleased for you :) enjoy every moment making your new life and thanks for the well wishes xx

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Welcome SaraDee. It sounds as if you are having a hard time at the moment. I am very sure stress contributes to our problems. I'm another early retiree, and, like whisperit, can't imagine doing any sort of work at all at the moment. I have been asked several times if I'd like to do some voluntary work in areas I have experience in, but there is no way I can commit to anything. I do sympathise with "looking well" when you aren't. This is a great forum and You'll dind a lot of support here.

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Thank you Lupiknits,

I find that when I have been off sick, I start to feel better enough to go back to work. When I do I crash/flare within days. I began to realise that because when I was resting and taking light exercise, that was keeping me well. Throwing work into the mix just throws it all out. I'm too exhausted to do my exercise and am miserable through exhaustion. But I have to weight that against the stress of loss of income xxx

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Hi saradee

Sorry to read of your health difficulties and job stress. You've certainly come to the right place for understanding as so many of us on here can identify with you!. Stress can definitely trigger these illnesses and make them worse and you have a particularly stressful job.

To help you decide if you can cut your hours financially it might be a good idea to go to citizens advice who will run a benefits check after taking all your details. You might find your entitled to things you didn't know about and they will help with claiming as the forms have to be filled in a certain way for best success.

Are you due a Rheumy consultation?. Might be worth bringing it forward to discuss your treatment. Sounds like it needs tweaking as your getting so many chest problems!.

Just ideas that might help, hope you improve soon. X

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Thanks Misty14,

I have a rheumy appointment on 11th so I will bring it all up then. Thank you. I certainly need to refigure my life right now. And I'll pop along to CAB. Thanks xxx

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Good luck saradee for the 11 th and cab. Let us know how you get on. X

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Hello SaraDee

Good to have you here, i am so sorry ur struggling with your job and your condition. Where do you stay? because you may have people in this forum who stay nearby and you could meet up. I found it very helpful when i relocated to bolton i meet up with a couple of ladies once every month and we shared our experiences.

We all do feel alone sometimes but the best thing about this forum is that, there is always someone who can identify with what ur going through. I have made good friends here even though i have not meet them face to face. I know i can get good advice, they make me laugh and i know that someone out there feels the same way i feel, so am not alone. We are here for you. Take care and God bless.

Regards

Ijeasike xxx

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Thanks ljeasike,

I live in Teesside and that would be so helpful! I'll look about for support groups - if start one but don't have the energy right now! So glad you have found your support xxx

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Hi Saradee,

I see you live in Teesside, I am from Darlington and found a doctor at James Cook called Dr Plant. He is a Lupus doctor and his waiting room is full of leaflets of advice on everything in conjunction with Lupus. There are also many meeting groups on offer. It may be worth a look for you, it did for me back in the day when worrying about everything. Now I just think I know every thing about Lupus😁 Good Luck if you try it out, it really did help me at the time. You never know how helpful it could be!

Good Health,

Wolf_1 🐺🦋😴💤

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Hi SaraDee,

I'm sorry to hear that you are currently struggling so much. Are your employers aware of your lupus? Have they made any adjustments to help you manage better in your current role?

We have a couple of booklets about lupus and employment that you may find helpful. You can read and download them at lupusuk.org.uk/working-with... or if you would like physical copies posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address.

If you need any more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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Sounds like your past experience and your current job is giving you too much stress, as other have said, and possibly might be a major trigger for you? It is so hard when our bodies aren't equipped to do the things we would choose to do, but also when we might not have any other option to continue to do things that aren't working for us.

I guess it's your call as to whether you can make any work adjustments, or find other ways to de-stress. I can only go by my experience, in that I work freelance and have had to tail down my ambitions and activity to focus on my health...it requires a lot of rethinking about my expectations and tendency to overwork, which I suspect was and is at the root of my autoimmune journey.

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Hi SaraDee,

It does sound as if life is very difficult for you at the moment.

One observation from your original post, you are taking sertraline, this can be a bit sedating in some people, I wonder if it is worth talking to you GP about possibly changing it to something a little more uplifting?

I am 53, I was a nurse for 30 years, but became unable to continue 3 years ago. I was lucky enough to be able to access my pension early. Although I miss work every day, I found it so stressful just getting there everyday and worrying that I was letting people down, that it's a relief, and my overall health has been better for it. I was suffering from awful fatigue, but I am a little better since it was identified that I am vitamin B12 deficient and started having regular injections.

It's easy to 'not make too much fuss' because our symptoms are so difficult to pin down, you might find that keeping a log of your symptoms and how frequently they occur will help your doctor to see how best to help.

You are right, I doesn't help that we often look like a picture of health, I have had comments for friends who are nurses and doctors, saying, "retirement really suits you, you look great".

They are well aware of the disease that led to my retirement!

I would take advice from as many people as possible about your financial situation before you stop working, you could also look at what can be done to make things a bit better for you at work. CAB is a good starting point.

I wish you good luck, whatever you decide, let us know how you get on.

Helen

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Paul's reply made me remember about an employer's responsibilty to make reasonable adjustments. Also, when I took Sertraline I found it was only slightly worse than venlafaxine in terms of being a horrible brew ( for me, but we all vary) Any way there might be an alternaive for you.

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Hello. I saw your post earlier but didn't have enough time to reply properly. I know how you are feeling re trying to juggle everything, whilst living with this chronic illness that few people really get. It's horrible isn't it, when you can't see a way out?

I was diagnosed with SCLE in Oct/November 2013, but the diagnosis never sat well with me, as some of my issues didn't add up to that diagnosis and plus I found that my Rheumy was increasingly ignoring my pleas of help. The lupus wasn't under control with 2 x 200mg of hydroxy every day and despite having obvious flares, she offered no treatment plan or meds to help. I was sinking fast.

I have 3 children, now aged 13, 12 and 9. I was working 2.5 days a week as a Teaching Assistant at our local junior school. And trying to be a wife and a mum and run a home etc. All the plates we try to spin in the air, like magicians. But by last April I was really low. I suffered another flare - lasting weeks and hadn't long recovered from the last. I had the most horrendous headache that we contemplated A&E, I was crawling the bedroom walls with pain and was a blubbering scared mess, to be quite honest. I'd got stuck in a rut. I'd come home from work, after collecting the children and I'd go to bed. For 2 or 3 hours. The 3 of them being left to their own devices - playing outside or watching TV. I'd snap at them if they woke me. My husband would come home after a very long stressful day at his job, find me sleeping and no meal prepared. He would have to cook and call me. I would eat and crawl back to bed. On my days off I would sleep and just about get a food shop done. The kitchen was never tidy and there was washing up from days before everywhere. Piles of washing was untouched. We were getting in a mess. No one was happy with the situation.

In the meantime I had meet a new dermy and he'd done a biospy of a rash at the nap of my neck, but I'd been told by 2 other doctors that it was inconclusive and wouldn't help me. So I was feeling very disappointed, despondent and very low.

There was a merger happening at work. The infants and juniors were combining, in a new building in September and there were looking for redundancies, as with all schools. I originally thought I'd fight for my position but as time went on and we attended stressful meeting after stressful meeting, I realised that my health was suffering even more. So I put myself up for redundancy and it was accepted, but I still had to work until the end of term - so from April to end of July.

My next dermy appt, my husband came with me. He doesn't often, due to work commitments but he was very worried about me and the lack of help I was receiving. We saw the dermy and he was very helpful. My biopsy results were far from inconclusive. It showed active lupus disease at every level. It was just that the other doctors I'd seen hadn't been able to interpret the biopsy report properly. He was also very shocked to hear how bad things had got and that I'd felt I'd been forced to hand my notice in at work, as I wasn't coping.

He helped me get 2 x 5 week courses of steroids over the summer months, the first time I had ever been offered steroids for flares and eventually I started on MMF, working from 1g a day to 3 a day, over about 5 weeks. He was confident and knew what he was talking about, unlike the other doctors I was used to. He offered me hope. I trusted him.

I was then upset, as I'd put myself forward for redundancy and literally a week or two later meet someone who promised to help me. But I knew I had to sort my health out and the reality was, although I loved my job and it suited me and us in every way - part time, close to my children's schools, school holidays off - my job was taking the best of me. I had nothing left for my family at all. And that wasn't fair on them. They deserved the best of me. I began to realise that I didn't want them to remember me constantly being tired, sleeping and being crabby with them.

Then my amazing dermy left and I was back to square one with my reluctant rheumy. I ended up going to the London Bridge Clinic in April this year and I was told I have SLE and had done all along. So I'd been right, I'd had the wrong diagnosis for 3.5 years. i am now on hydroxy, MMF and mepacrine and finally seeing light at the end of a very dark, scary tunnel.

Although I was very upset about finishing work, aged 41 and wondering if I'd ever hold a job again due to this horrible illness, I can now look at the decision with some perspective. I miss the children at school but nothing else. I can now pace myself. I rest during the school day, so that I am awake when the children are home from school. I can drive them to their after school activities without feeling that I might actually fall asleep at the wheel and I've been able to let them do more after school stuff, as I've felt up to it. I still nap now and again at weekends, if we've been for a long walk or whatever, but I'm in control of what I decide to use my spoons on. Have you read the spoon theory?

My reply is rather long. Sorry. I just wanted you to know that you are not the only one who has ended up in that rut. I totally appreciate that I was very fortunate that my husband can support me. We didn't go through the whole process of leaving work due to ill health. I just accepted redundancy (I'd only been there 4 years, so not much at all) and worked my notice period. But I am happier. I am finally getting my lupus under control. I am less crabby with my family. I am enjoying the life I have been given, the best I can.

It felt like the end of the world at the time but I now know it isn't.

Does your employer know about your lupus? Have you spoken to your family about how you are feeling? Can you discuss your options, financially with the Citizen's Advice Bureau?

I'm sorry for waffling. I hope I have helped at least a little. You are not alone. use this site, it's an amazing support to me and always has been. My life line.

Best wishes.

Wendy

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Hi Wendy,

What a wonderful reply, you have just expressed what the majority of this site are feeling. You truly are a magnificent person who has dealt with so much with young children in tow. In my opinion most people will find you a true inspiration for what you go through and carry on going through. I felt like you were talking about me when I was first diagnosed. I too carried on working in so much pain and fatigue for 20 years until recently at 46 could do no more. My family and sanity had to come first! Keep it up and enjoy your family as I’m sure your family are so glad that you’re back home to them once again! ( although trying not to show them too much of the pain your really in I’m sure!)

Good Health to you,

Wolf_1 🐺🦋😴💤

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Thank you for your reply, but you are too kind!

We are all the same aren't we? We battle on and make the most of the hand we have been dealt. But I am glad that you could relate to my experience. Being a mum and juggling life is demanding enough, let alone throwing in working and a chronic illness.

We need to be kinder to ourselves, adjust our expectations, we are human and not superheroes.

And yes, you are right, we aren't honest about what we struggle with on a daily basis. The aches and pains and fatigue etc. It's when I started to wear a support on my elbow and wrist recently that my children asked what was wrong with my arm - it's been painful for over 6 weeks now but I don't want to worry them every day.

I am loving being here for my children and hopefully when they are older they will look back and think themselves fortunate that I was here for them.

Thanks again. Stay strong and have a good day.

Wendy x

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Welcome. Ugh, wow, this is like reading my diary from over a decade ago :/ I used to sit on the bed and tell myself for at least a half hour to woman up, get up, you can do this, you have to go to work, stand up, stand UP...I didn't have a diagnosis and I definitely didn't have much empathy from anyone. I was so exhausted, people talking to me was like hearing a different language.

At the end of it, I got fired - which at the time was financially devastating, but at the same time was almost a relief. I had to do a lot of adjustment and hustle, and I've tried holding down various self-employment options since; some worked, some didn't. Calling my own hours and doing things when I could do them, on my own terms, helped for a while, but eventually my illness advanced to a point where even that wasn't possible, and I've officially stopped working this year.

Is there any way you can get some adjustments to work? Are you able to receive any additional benefits or support in the meantime? When I was self-employed and on tax credits, if I had a flare, I was covered for up to six months, and I still had income.

It sounds to me as if you need to make a difficult choice between your health and your job. I know the current job market is grim and you want to try and make a difference, but health isn't something you can compromise on. The thing about chronic illness is there's no 'rising above it', or at least that is my experience: if you ignore it and try to just stubbornly force your body to do things, your body will sooner or later force you to stop. It's not a matter of being strong-willed. It's like trying to fight against gravity.

There are times I wonder if I could hold a job again: surely I could do something?! But then I have a day where I realise I'm exhausted because I tried to concentrate on two people trying to talk to me at once for an hour. No: I'm still ill, I'm still struggling with even the simplest of tasks and I still have to hide out in my room for most of the day because even simple interaction with my fiance exhausts me. I need zero stimulus just to be able to recover from a half-hour chat, I need to sleep 10+ hours a day and I had to have the worst talk EVER with Dutchman to propose we sleep in separate beds so I can actually sleep at all. I still need iron infusions if I want to function like a human being. That's not a matter of willpower. That's just the way life is; currently I'm responding a lot here because, primarily, I'm trying to stay awake. But I haven't felt like communicating in weeks here because I haven't had the energy to do so.

It utterly sucks but that is the way of it, and I ignore it at my peril. There's a reason I've put so much time, effort, energy and creativity into decorating the Boodwaah - I spend most of my time in here. It could be a prison if I allowed myself to look at it that way. I'd rather see it as sanctuary.

I wish you strength, clarity, peace, and ease. I wish you courage to do what I imagine you already know needs to be done (which doesn't make it any less scary). I wish you hope. And I wish you joy. Good luck!

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Hi I think you need to have a serious examination of wether you are fit to work, and what things may help you stay in work but also stay "as well as you can be". People with Lupus vary in their ability to be in employment, some can work, others only part time, and many of us (myself included) have had to stop being in employment. I had to retire due to ill health ... I was in a works pension scheme so qualified for an ill-health pension, it may be worth seeing if you are entitled to anything like that. It took me ages to accept that I was not well enough to work, and I tried all kinds of things to keep working, but my symptoms (particularly my fatigue) ment that I was not well enough. In hindsight I tried too hard to keep working, keeping going back to work after periods of sickness absence etc, and giving up work has been on of the best things for me and my health

Look up the Lupus guides that Paul suggested and get your employer on board as simple adjustments may be of help to you, for example some people find filters on lights help stop UV/ light sensitivity flare ups, others find flexible working helps, others get "lighter duties" or things like phased returns following bouts when their health has been poor, and employers often will give "disability leave" so that you can have a certain amount of time "off sick" and for medical appointments without it counting as "sickness" when it comes to things like "capability policies".

Also please speak to your GP and consultant and be fully honest about what you are currently doing .... managing to work but having to sleep the rest of your time is not a good quality of life, and also does not help you be "as well as you can be". Also stress can make lupus symptoms flare up. Your Drs need to fully know the extent of how your symptoms, including your mental health, affect you so that you are not missing any treatments that may help you, and also to help fully support you if you do need to claim social security benefits if you are not able to work.

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