LUPUS UK
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I'm worried about telling people how I really feed in case I lose my job.

I was diagnosed with Lupus then told it may be connective tissue disorder, then Lupus...I wish they would confirm it. I get so tired at work that I have nearly dropped off a couple of times. I get the butterfly rash, my joints are so painful, especially my knees. I burn up so much that I'm afraid to put the fan on at work because people moan they are cold, even though the heating is at full whack, and I end up with such a rash on my fas and dripping with sweat, I feel so embarrassed. I get pains in my fingers and suffer with raynaulds that my fingers get painful at the tips sometimes. I often feel a wreck but can't tell anyone, not even my GP, because I'm suffering with work related stress/depression through bullying and intimidation. I have gone back to work after two months off, but nothing has really changed. This is the first time I have ever said how I partially feel. I did not want to moan about myself to others, but it cry a lot and feel so lost. Sorry.

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Please see your Gp today, write down what you are feeling and give it to him

You shouldn't be treated at work like that, you have rights I am sure you could take it further.

I am so sorry you are being treated like that.

Please tell someone else how you are feeling you shouldn't be dealing with this alone xx

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Thank you daisyd. I guess I don't want to be seen as a failure or quitter. I'm scared of what may happen if work decides to reduce my hours as I may end up losing my home as we need all our money for bills etc. the bullying is hard as I have never experienced anything like this in my working career. I have always found it hard to talk about how I really feel...I have always been the one people come to. Sometimes I feel just like giving up...but I can't. I will write down exactly how I feel and give it to my GP.....thanks, that is a good idea. x

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Hi Tassiewoo,

I am sorry to hear that you are finding it hard to get a confirmed diagnoses from your GP. Would it be possible for you to see another GP in your practice if you are finding it hard to talk? Or to change your practice altogether? I agree with daisyd in noting down how you feel, it could make it easier for you instead of trying to find the right words.

If you think it would help i could send you an information pack which has a few booklets containing some facts on lupus and the symptoms, maybe you could take this to your GP on your next visit? You could even take it to your employers so they too have the chance to read and hopefully understand the condition a little more.

If you need to talk to somebody direct for more advice please feel free to contact us here at the National Office on 01708 731 251 and we will be happy to help. If you would like me to send you the information pack then just send me an email with your address and i will pop one in the post for you. hayley@lupusuk.org.uk

Best Wishes,

Hayley

LUPUS UK

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Hi Hayley,

Thank you for your reply. My GP is lovely and she said it is Lupus with the symptoms I have and results. My previous rheumy specialist said at first Lupus, then CTD, but have osteoporosis with all the symptoms of Lupus. Then my new rheumy said Lupus and upped my dose of hydroxychloroquine, as she could not understand why it was halved. But I would love the information pack and booklets, as this would help and also ask my manager if this could be put somewhere so it can be looked at.

Thank you for your advise and will put the number on my phone so I have it.

I have people at work that go on about their illness for sympathy and I don't want that, but if guess I want people there to be a little understanding when I have bad days, but the bully and intimidation does not help trying to cope with it all. I will write a letter to my GP and tell her exactly how I have been etc.

thank you.

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Hi Tassiewoo, that all sounds so hard and I'm so sorry that you are struggling at the moment. Firstly Lupus is a connective tissue disease anyway......it just may be that it overlaps with other connective tissue diseases such as rheumatoid too or like mine where they think it is lupus/myositis. It doesn't mean that any of your symptoms are less real and will still have all the same issues as just lupus on its own. Sometimes it just takes a few years to know how it will all evolve.

With regards to your work situation you may just need to be kind to yourself at the moment. Firstly I would follow the advice above and go and see your GP then depending on what happens then review your position at work. In the mean time can you get some advice re any benefits that could help you whilst you are trying to get yourself better.....DLA(PIP as it's now called), ESA, or job seekers. This is just so you have the information handy should you need to make a choice. If your GP is saying that you are not fit for work just now then you may be entitled to Employment Support Allowance. If you already have a partner earning a reasonable wage then you still may be entitled to this via the national contributions that you will have paid to date. Even if this was for a year then it would help you to evaluate your work situation.

You have done the right thing by admitting you are struggling as this is the first step towards an improvement. Sending you a hug and keep in touch to let us know how you get on xx

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Hi mstr,

Thank you for your reply. I did not think that I would be entitled to any help if I was to be off work longer than I had, hence why I went back. I have cried every day since, not just with the bullying put the pain and other symptoms of Lupus, and being so tired all the time....I do try and fight it and be as positive as I can. I will have to look into it and get advise.

I must admit I always think of others before myself, and I guess this has not really helped of late.

I will keep in touch and let you know what happens. Thank you so much.xx

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If you google how to claim ESA on the internet...they will give you a number to ring. If you try and make sure you have info to hand like your national insurance number, and then they will take some details from you over the phone about why you want to claim this. They will ask if your partner works and his wages.....but don't forget you can claim for a year if you have enough national insurance contributions. They will send you the form and you may have to attend a medical where you just have to be honest and say how it affects you daily. Please say how every little thing bothers you such as from getting up in the morning to going to bed. How your life has changed. You really have to emphasise everything. Then when ESA finishes if they still are saying you are unfit for work you can go on job seekers allowance for six months one year.)well that's what they are saying you are unfit for work)....this will buy you some time whilst you are considering whether to apply for Personal Independence Plan (old DLA) and how your condition is going. I've been where you are and you just have to take it one step at a time.... If you are reassured money wise then that takes the pressure off. I didn't feel guilty as I had worked for 30 years and still would if I could.

In the meantime if you are soo tired are you on the right meds. Have you discussed this with your rheumy. If not when you see your GP about your present isssues you could discuss this and request if they can refer you or if already referred phone up and ask for an earlier appointment due to the fact that you are struggling.

Good luck....one step at a time xx

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Thank you so much mstr. I really do appreciate all the information you have given me, I would not have known where to start to be honest.

I will make sure that I will open up and be honest about how I have been, as I don't even say anything to my family let alone completely to my GP. I guess I always feel there are other people who are far worse and need the time with the GP etc, just hate putting people out. I may not be able to say it all face to face, but I will write it all out for the GP. And I will ring and find out about ESA etc.

Positive little steps....thank you. xx

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Hi Tassiewoo

So sorry you are having to cope with so much! Mistr has given you very good advice but I just want to add that if you go to your local Citizen's Advice Bureau they could help you with the bullying at work, claiming ESA and or PIP and they would run a benefits check to see what other help you may be entitled to as you've got a family. Hope that's helpful and best of luck. X

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Hi Misty.

Thank you for your reply. I did not think about CAB. It is worth speaking with them too...thank you for that.

Best wishes.xx

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Hi Tassiewoo

Let us know how you get on. Hope it all improves for you soon.x

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Hi Tassiewoo, you described my symptoms exactly - right down to the fan at work! I finally found the courage to tell someone at work only to find that she also has Lupus and was in a worse state than me! We supported each other after that and she left the business and started her own company and is very happy while I am off work with another flare! My new team mates are completely shocked at what I live with but are very supportive now that they understand.

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Hi MargaretGail.

That's so great that you did find someone at work who could understand what you are going through too, sad that she left but good for her to set up her own business. My fan keeps going for walk abouts and I can't do without it. I'm glad that your new colleagues are so supportive of your condition. Unfortunately I know of a few at my work place, that I have to work closely with, would not be at all supportive. I will have to see what happens when I have my occ health appointment next week. X

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I think that it is really difficult to support someone with a condion they do not understand. It's even more difficult because we don't fully understand it ourselves. One of my colleagues shouted at me in front if a full office for closing the blinds on what he considered to be a dark day so I explained to him the full details of what the sun does to me and he never commented again. By the way write your name on the fan in large letters it works!

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Hi MargaretGail.

I spoke with my manager today and told her about how I feel so bad putting on the fan when I'm burning up on my face, because others say they are cold. She was very supportive and said they can put extra clothing on as it's unfair I have to sit there burning up and having the sweat run down my back making me feel uncomfortable for the rest of the day. She did not really know about lupus so I gave her a very brief explanation. My name is on the fan...but I guess I will have to make bigger and more stickers to put on it!

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Hi Tassiewoo glad to hear the news about your manager I think that it is always the hardest the first time you tell someone and it gets easier after that. Good luck with the rest.

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Hi Tassiewoo,

I'm sorry you are having such a rough time of it. I've been in the position you are in, but I didn't go to anyone for help and ended up being bullied out of my job and losing my home. What I know now, is that I would have been entitled to ESA and help towards mortgage costs and council tax, but like you I thought I had to keep working to pay the bills and didn't look after myself and in the end it was out of my control. It's worth seeing if your employer has an occupational health department, as there may be adjustments that can be made to make life a little easier at work. It is also worth exploring the option of a career break whereby your post could be kept open for you while you took the time off that you needed without the pressure of needing to get back, so that you could concentrate on getting your health under control and working with the doctors on balancing meds etc, and ESA or PIP could tide you over in the interim. Finally, while you shouldn't have to tell people about your health unless you want to, some disclosure will be met with a surprising amount of support by your colleagues and might just shame the bullies into leaving you alone. I really do wish you all the very best, and hope that you have reached out and got the support in time not to end up where I did. Gentle hugs xxx

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Hi Lipbalmaddict.

Thank you so much for your reply. I'm so sorry that you ended up being bullied out of work, I hope that things are getting better for you now. It is so distressing and on Friday I was on the verge of quitting.

I have an appointment at occ health next week so will see what happens there. I am dreading it in a way, but I will make sure they are aware of the situation and my health.

I'm not one for telling my colleagues about my health, but a couple of have been told but don't really want to respect my needs, even though I have been respectful of theirs over time. One person I spoke to last week was absolutely great and understood my situation, as her friend has just been diagnosed. This person at work has RA and could understand my pain as I could hers.

I will certainly look into ESA/PIP and find out what I can do to try and take some pressure off a bit.

Thank you so much for your kindness and information.

Hugs and best wishes.xx

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I believe lupus is covered by the Disability Discrimination Act. I don't know if this is helpful. Wishing you well.

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Thank you baba, I will look into this.x

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The two leaflets from lupus uk on lupus and employment are really goodxx

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Hi smkelly,

Thank you. I shall definitely look into those and read upon it. I am due back to work next week and really getting anxious about it. Thank you for your reply. :)

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I totally agree with all the wonderful advice and support you have been given. All of us who struggle on at work will be familiar with the need for top-show. I explained to my boss that the amount of make up I am wearing is directly proportional to how rubbish I am feeling! and luckily I work in an office that has zero tolerance for bullying.

Anyway PIP is not means tested and your income has no impact on the amount of money you receive,

there are websites that can give advice on filing in the claim pack. a top tip is to only describe your worst ever day.

I wish you the very best of luck and that you find a solution to this situation that works for you, :)

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Hi! My name is Denisa and I am from Slovakia. I am a young student of Medical laboratory scientist and I am interested in disease of SLE. Now I'm going to work on my final topic for bachelor degree. I would like to do a research about how are the results of people who are hospitalized, compared with the results of people who are already receiving home care. (And In the future, I would be trying to do research for the treatment or reduction in the incidence of SLE.) So my question is that : whether you would be willing to work with me in my work via the Internet? This would be especially about the laboratory results of the comparison of the Slovak Republic and the UK or maybe why is the country's lower incidence of disease.

And finally I am so sorry for my english... with love and desire a nice day Denisa :)

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