Anyone else been stuck in bed today?!!!

I have been tucked up with my 'wolf' today, hearing the world getting back to business after the festive holidays. Of all the things I hate and loathe about this condition it is the clash between brain and body. My head wants to get on with the myriad of ideas whizzing around inside it like a hive of honey bees, but my body won't respond. The loss of energy is worse than the pain, the puffy face, the numb hands and feet and sore eyes and mouth. Anyone know where I can find a new battery? My old one has gone a bit flat and I don't have any jump leads that work in this scenario!!

7 Replies

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  • I'm thinking of just getting dropped off at the scrap yard!! My battery is definitely dead!

  • Ha, we could travel there together!

  • Helly72 I completely understand where you are coming from!!! I am too tired to move, and when I do my knees seize up and I am in agony.and my eye has started doing funny things where it closes by itself. But now like you the actual eyeball hurts!! I want to be out and about doing things but cannot move off of the couch!! And Purple-lou I know how you feel I wanted to be shot yesterday!! haha hope it gets better :(

  • Yes I have had to resort to bed. Fatigue,left elbow is really painful, right shoulder aches and I can't raise it above my should but most painful of all is my right lung it feel as if

    I have broken bibs and someone his hugging me so tightly. Turning over in bed or even bumping into something sets it off must be having a flare. I am on anti TNF'S but since my last injection have felt no improvement, which

    I would normally do!

  • I have been stuck in bed all day today. My legs are weak and in pain finding it hard to move.

    Somebody rang from work to say that they had cleared my desk and they have moved it all in to boxes that's 20 years of my life gone because of lupus that was the final piece of my day destroyed. I'll health retriment at 47 I feel so sad. I hope tommrrow looks better.

    Luppychick x

  • Hi Luppychick. I am so so sorry to hear about your premature exit from work, forced by lupus. It is a horrid feeling, same thing happened to me. One day you are one person, the next... well you have no idea who you are other than someone suffering from a nasty disease. The good news is that you can find a new 'career'. When I was terribly sick I began using my children's watercolours and discovered I could actually paint. not brilliantly but well enough to encourage me to do more and more so I became better and better. I ended up going to University and got a BA in fine art. I now have a studio and I go to work when and if I can. It suits the condition well as I can plan the day around how I feel when I wake up - as you probably know with lupus you tend to go to bed and haven't a clue how you will feel the next day.

    Art is also something you can do when you are lying down, play with images in your head. Plan pieces, or photographs... whatever takes your fancy.

    The thing is, try to view this as a beginning not an end. Distract yourself from the pain by thinking about what you would like to fill your time with, as and when you are well enough to do so.

    Sending cheery hugs, as bad as things feel right now they can and will get better, I promise.


  • Thank you Helly you have stopped my tears. What you said about one day you are one person and the next you a person with a illness that you will have till the day you die. The painting and photography gave me an idea I have always loved plants and flowers and I would love to start pressing flowers and to grow exotic plants it's something that I might do when I am stronger. Thank you Helly and for stopping my tears.

    Luppychick x

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