Working with Hughes and Lupus

I have Hughes, Lupus (SLE) and Sjogrens and have been diagnosed with these things in the past year. I have always worked full time but really struggled over the past 3 years to manage the working, housewife and Mum roles... too tired, aching, daily headaches and migraines and seriously struggling. I was prescribed a medication for the Lupus but had a severe reaction and ended up in IT and off work for 6 months and on Chemo - the reaction has left me pretty unwell and it is expected that it will be another 6 months before the reaction itself has left my body. So, due to the reaction I am not being medicated for the Lupus apart from the warfarin - this makes life very difficult and to be honest very scary..

To top it all I have now been made redundant from work - a career of over 13 years that I loved. Now I am getting quite worried as to the future - i.e. will I feel well enough to work again? Will anyone want to employ me? How can I financially cope as I hear there are no diability benefits available for Lupus patients??

Any advice or thoughts gratefully received.... Mary.

7 Replies

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  • Hi Mary,

    Welcome to the group I am sorry you are feeling the way you are at the moment, i do understand your feelings on the tiredness and feeling unwell sometimes you just do not know what to do but if just talking on here helps then please talk away I would recommend you speak to your doc about your fears on the Lupus front and see what he/she says.

    I can understand your fears on the future of working and there are a number of questions which cannot be answered for the future but on a day to day basis of how you feel. I am really sorry to hear you are being made redundant but depending on your age and finaces you may be able to go for and i would recommend you speak to the Disability Adviser in the Jobcentre people have had mixed reactions from them i would also speak to your local Disability Information Help service who can refer you to agencies in your areas you could also speak to CAB etc there are a number of afgencies that can help you where do you live we might be able ti point you in the right direction.

    Do not worry you are not on your own we will help as much as we can.

    paddy

  • I understand how you feel, i work full time with four children, i also have Hughes, APS, i find it so hard some days, will be made redundant in march and what will my future hold?

  • Hi Mary

    Welcome to this site,I am so sorry you feeling so unwell at the moment. There are lots of us on here who know how you feel and I hope we can help.

    As Paddy says keep talking to the doctors about the Lupus, maybe there are other alternatives. There are new treatments being tested too so who knows they may help in the future.

    As regards disability, the CAB and local Welfare rights society should be able to advise you. Everything with disability benefits is about how your conditions affect you on a day to day basis, not so much the names of the conditions.

    I hope things get better for you soon.

    Take care gentle hugs, love Jessielou (Sheena) xxx:-) :-) xxxx

  • Hi Mary

    I am very sorry you are going through this and been diagnosed with these conditions on top of being made redundant. What Jessie says about disability benefits is correct they are paid on what the disabilities are not what the name of your condition is (unless it is one of the conditions that gives automatic payment). Therefore you should think about starting a claim for DLA now as it takes awhile and you can still be working to receive it (its not means tested).

    If you need help with this I am a member of Disability & Work a really good website which gives you loads of help and advice with regard to making successful applications for things like DLA and ESA. You can join or if you dont want to you can PB me and I will help you with the members stuff so you can see what you need to do.

    Take one step at a time and one day at a time and try not to let everything over whelm you. I have been where you are as many of us on here have. We find a different life after work sometimes a better one that suits us.

    Deep breath...... x

  • Hi Mary

    I am sorry that things aren't great for you right now. I'm not sure if what I'm going to say is useful... I have a kidney transplant, Huges and Lupus and a host of complications from the medication etc however I still work full time (in fact I got my first job after my transplant!) and I have never had a problem with employers. I am always honest and mention it in the first interview because I don't want to work for someone who doesn't understand long term illnesses. But I have never had any problem skipping off for hospital appointments and they even let me work from home from time-to-time. I do work for a consultancy and I manage my own time, am often spotted in hospitals on my BlackBerry (shhhhhhh) or laptop. It is hard work, sometimes more than others. I am not affected physically; I can walk, run and ride a horse, I don't have kids (three dogs, a horse and a cat though!!) but to put it simply: I need the money!! I received no benefits at all when I was on dialysis, not even free prescriptions so I know that even long term I will not be able to rely on the government for help.

    I love working and I work hard to prove that i am a worthwhile employee but that's more for me than my emplyers, I think. Once you are honest and find the right boss, working may be possible - trust your own instincts.#

    Take care

    Tx

  • Thanks to everyone for their kind and very helpful comments - it has given me a lot to think about and where to start in the next steps with all of this. Tasch - you are very brave and an inspiration - I too have always worked and not relied on anyone else, being redundant is very strange to get my head around and I am sure an employer will see the positive side of employing me - thank you for your kind words.

    I have been advised to make an apt with the job centre so will arrange something for next week. I think the whole situation seems to have come at once and that is what freaked me out but I will tackle each issue on its own and hopefully muddle through to the best of my ability!

    Thank you again for all your kind words, it really helps to know there are others out there who understand what it feels like..... this week my joints/muscles and bones ache so much I look like I feel (awful!!)... I hope next week it feels better!

    Have a fab weekend all xx Mary H

  • Hi Mary, Don't worry- I had a good job for over 20 years and felt unwell most of the time but GP just said I was exhausted because I worked fulltime and a mother of two young children !!! I knew something else was the matter with me. I was finally diagnosed in 2008 with APS. I had a few other good jobs after this long career but felt so ill and got stressed over it and lost about three of them because the employers did not understand-I am sure they thought I was making it up. Some days i did not have the strength to get out of bed and was diagnosed with Chronic Fatigue and Depression ???? This was before 2008. I began to feel it was me. I have not worked since 2008 and like you worried about finance and how I would cope. But I can assure you , you will, you adapt your life style. My health comes before money now. Sometimes its a struggle but you should go to Citizens Advice bureau where i got advice from and they will discuss what you can claim for. I hope to go back one day to work even if its part-time but don't know whether I will or not. At the moment I do not feel well enough and worry that if I do some kind of work I might not cope. I miss the working world to be honest-bit of a shock when one has always worked from leaving school and then suddenly out of the blue not able to work due to ill health-but who expects it to happen to them.? I certainly did not! So, one cannot plan their future. You will be fine-its amazing how you do cope-its only natural to feel scared about the future-some of us don't admit we are scared-I certainly am amongst others on this site but some don't admit it but its reality.

    Just remember, you are not on your own-there are many of us that feel and think just like you !!!

    Take care

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