I've been recently diagnosed. 8 weeks and 2 days to be exact, and I still don't know how to take it. To make matters worse, my sister was then diagnosed with type 1 diabetes 12 days after my diagnosis and was rushed to hospital so the stress and the worry caused me a massive flare up, which is still happening! I started on 40mg of steroids a day back in January while they ran tests to see what was wrong, it was then lowered to 20mg a day after they found out and they appeared to be working but then this flare up happened and they upped the dose again.

I've been having major trouble walking, so they sent me for an MRI scan on my right hip. As it turns out they think my hip bone is beginning to wear away, and at 19 (well any age really) thats definitely not what I wanted to hear and I just don't know what to do anymore. I shake constantly, my whole body click and creaks every time I move, I ache from head to toe, I can never get comfortable, I'm tired all the time and I'm getting quite fed up to be honest. To top it off, I was a home carer, and now I don't even think I'm going to be able to go back to doing that (I've been signed off for the past 6 weeks and I have 4 weeks left to go) as I don't have the strength or the stamina for it (pulling people around on hoists is near impossible) and I just don't know what to do. I have the best support network, an amazing boyfriend and family around me, but I still don't feel like I'm coping with it all...

Do I quit my job? Is it going to get better?

(I just want to add, I know this makes me sound like an incredibly sad, down person, but before I found out I was bubbly, happy, cheery and now I just feel drained. Is this part of the disease?)

I just don't know what to do...

7 Replies

  • Oh my goodness! Take a deep breath.......I know it's very difficult when your told you have something Wrong with your body.

    Read what you've written at the end.......I was a happy're still there! You need to just give yourself time to get used to the idea you have a problem, all problems can be dealt with.

    Yes feeling drained is probably part of your condition. Tomorrow is another day and hopefully will be a better day.

    At the moment don't look to far ahead, it's too soon to say to quit your job give yourself the next 4 weeks to see how you feel.

    Look at what you're going to do today and let tomorrow take care of itself.

    Good luck, hope this is a little comfort, we all have rubbish times as well as good times xx

  • Thank you! I know deep down I'll get through it eventually, it's just getting there, and I suppose I am. Slowly but surely. It's a comfort knowing what is wrong and that I have a problem and it wasn't my imagination when I could hardly walk and kept dropping stuff, but obviously, like anyone, I wish I didn't have it. I shall just power through and as you've said live for today and see what tomorrow brings.

    Thanks very much, this has been really helpful! xx

  • I can totally relate to your difficulty coming to terms with this awful illness that at times takes over our lives. But please note I say 'at times'. I was diagnosed two and a half years ago, initially I felt great relief at having a diagnosis as it actually meant my symptoms were real, I was neither lazy or a hypochondriac, and most importantly I had an explanation for why I felt so poorly and I was not going mad.

    Over time, we do learn to come to terms with the diagnosis, the illness and symptoms and the limitations it places on us.

    However, even a couple of years on I still occasionally have tough times, where I am not accepting at all, just this week having been to lupus meeting and chatting, I came home feeling sorry for myself and cried that evening to my partner saying ' I just don't want it!'. Sadly we dont have a choice, but we can choose to make the most of the good days.

    I would guess you sister being ill has also taken it's toll on you, and like many people your body is reacting to the anxiety, stress and worry.

    Whilst its' sometimes difficult to be positive, try and take one day at a time, and like Chris21 says, deal with today and try not to worry about tomorrow.

    All the best,


  • Hi Slowmo, no my sister getting sick definitely hasn't helped either, so I guess that's not helping, but I have this forum now, and I can get plenty advice from people who actually understand what I'm going through as my family can't help with that side of my illness, (although they are an excellent support network and better than I can ask for) so hopefully I'll start feeling more positive.

    Thank you!

  • Hi E-say, very early days for you. Im in 3 years into diagnosis now and still have times when I get angry with it all, but you definitely develop coping mechanisms that help you stay positive as time goes on. The key thing is to always try and be as kind to yourself as possible in a nurturing way. Look after yourself as you would look after someone you love. Rest when you can, warm beautiful smelling baths, little treats when things are really hard, chat with a good friend, all the things you love about life which are still possible. Trust me, as someone else said, you will not have lost your wonderfull personality and it will help you deal with everything. You will probably need to get your workplace to carry out an Occupational Health assesment before you return to see if adaptions need to be made to your working conditions. And its possible you may need a less physical job with less hours in the future, but with lupus its always best to take things one day at a time as things can change on a daily basis for many. Lupus Uk have a good info sheet you can give your employer by the way. I am sending you much love. You are not alone. Those with lupus are a strong and supportive community xx

  • Hi E, stay strong it is hard for us to comment strongly on anybody individually as lupus affects us all in different ways, but remember there are positives both you and you sister have a diagnosis and the nhs can now begin treating you both. Fortunately they are now aware of both illnesses and that is good as they have treatment plans for both.

    Being undiagnosed could be far worse. You also have a good thing as your sister is unwell you will both be able to talk about being ill and how it affects you both and devise and come up with coping strategies

    The forum is good for asking questions about symptoms and offering advice from people who like you are living with the illness and we can impart our own strategies to see if they help you.

    Remember as someone newly diagnosed your body is turmoil, it is bad otherwise they wouldn't have even tested you. This is a timeout time of your life your body has asked for you to take it easy, it's an adjustment but some life changes can be positive, you will get to know more about you, your body and you will pace your day better, find the friends that are worth keeping and adjust to your new lifestyle, it just takes time so take the time x

  • Hi SarahHeney & twist,

    Thanks for the advice! I think it just came as a shock that it's going to be far more difficult than I imagined. I'm definitely glad I found this forum as I know there are a lot of people on here that can help and support me. I've been thinking about changing my job anyway as my doctor and consultant have told me I shouldn't be working at all as my body just can't cope at the moment so less hours and less physical is probably the way to go. Like you all have said, I'll just take each day as it comes and look after myself as best I can.

    Thank you!

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