Finding it difficult to cope :-(

Hey am new on here- have been reading posts for a while but first time posting.

I got finally diagnosed with lupus in feb this year after 2 years

Of being ill. At the min my lupus only seems to be affecting my blood - low white

Blood cells, low hb/ ferritin levels and low b12. However I

Am really struggling over the past few days with extreme tiredness, headaches, ear ache my glands feel up, generally feel my limbs are heavy everywhere too. I'm currently working quite a physical job and scared am gonna get sacked due to the amount I have had off work. I would love to give up work as every day is a huge struggle but with my partner being at Uni I have no idea how we would cope financially. I have no idea what to do for the better or how to cope better physically and mentally with lupus.

8 Replies

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  • Its really hard learning to live with Lupus. If you're feeling that poorly, alone and unhappy you must tell your doctor. All of these things are part of having this illness and sometimes adjusting medicationbs can help. I suffer really badly with fatigue, I go to bed at 10pm sleep til 9am and still need 2 hours aftewrnoon nap! This is only when I'm having a bad flare but is an example of how it is for others. Don't feel alone, you can always blog and vent your frustrations. Much love to you.

  • Thanks for your reply... My gp isn't exactly understanding. Just been there this

    Morning and apparently I have a virus and am fine to work. I don't feel he understands lupus at all x

  • Hi, sorry to hear you're struggling and I think all on this site can fully empathise with you. Have you thought of enquiring about certain benefits. For example are you entitled to employment and support allowance if your partner is a uni and you are unable to work? If you are diagnosed have you looked into DLA. You may have already done so but it is worth enquiring if you are struggling at work. Kind regards x

  • Nope have not looked into anything yet as tried to convince myself that I'm fine.

    Thanks for replying x

  • Hi,

    I have not been fully diagnosed yet either, although GP said lupus while rheumy said UCTD. I have been off work since September and claimed ESA (Contributions based). If you do finish work it may be worth exploring this. PS: Hydrocholoroquine (placquenil) helped me loads with the fatigue so again don;t know if you are on this. Best of luck with it all x

  • Hello

    I don't really have any answers for you but just wanted you to know you're not alone :) I haven't had a diagnosis yet and have also had some doctors that just seem clueless! I'm pretty sure I have lupus but like you, my day to day life is being affected so much. Could you change your doctor or ask if you can see a different one? I know that is probably not much help but in terms of practical suggestions it may be worth a try so you can get more support?

    Unfortunately this illness is so misunderstood and that to me seems the hardest thing.

    Hope coming on here and receiving messages and knowing others feel the same helps you :-)

  • ive had lupus over ten years now i had to give up work as i just couldnt cope i claime esa and dla go to your gp again tell him or her just how your feeling .gather all the info you can so you can take it with you when claiming .the info will help you understand whats happening to you hope you feel better soon x

  • Honestly, there are no instructions. How Lupus is going to affect you only time will tell, you may well be able to carry on working, you may have to adapt, you might even have to stop working, whatever the scenario don't be hard on yourself, you didn't do anything wrong, you just got Lupus.

    Contact Lupus UK, see if there is a support group in your area, ask for literature and if they can send you GP some information, remember he is only a general practioner, making an enemy of him will just exhaust you, make as much as you can out of your rheumy appointments.

    Contact the benefit enquiry line, it's s free 0800 number, they'll send out forms so you can at least apply and see what benefits you qualify for. Or get forms and make an appointment with Citizens advise and ask them to go through forms with you.

    There is help out there, it's not always forthcoming or easy to find. Just remember you are not alone, there are hundreds of us lupies out there supporting you all the way. Just keep asking questions and we'll do our best to answer.

    Good luck.

    Rosie xxx

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