Fed up now aaargh

Hey gang

Hope everyone is well. Just thought I'd have a little rant as I'm feeling thoroughly fed up. I've been feeling ill for nearly a year now and I'm still being told there is nothing that can be done and that I need to 'pace it'.

Every time I have blood tests done my ana comes back positive, and I'm easily exhausted and my muscle kill after doing very little. I just want my life back to normal. I've been back at work and on a good day I can do a full day... But the slightest thing, like last night not getting a good nights sleep, sets everything off.

I think it hits me when social events come up... My friends are planning a trip to Brussels in feb and I'm just annoyed that I don't know if ill be able to manage it or not.

I KNOW my body is not right, and I'm trying so hard to be normal but all I ever hear from doctors is 'pace it'! I know that none of you can do anything... Just wanted a rant.

Rant over!!!!

9 Replies

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  • Bless you..i empathize and sympathize feel bit rubbish myself today and want to be as i was before!!

    I keep saying to myself " this too will pass"

    Try and stay positive and know that you're not alone

  • Right with you on this one, also having a pants day, just too much going on and not enough energy to deal with it all, doesn't help I am easily confused, and just got in a right pickle whilst having a convo with my accountant. Just feeling down right fed up and miserable :(

    Chin up chicken, it will get better.

    x

  • Hey!i so understand ........i too am suffering and finding it extremley hard to be normal,or what i consider normal ,for me each day presents its challenges ,which is exhausting,i suffer terrible tendon issues ,and many more ailments,everyday is a down day at the moment ,i think its very hard to accept lupus or any disease to be fair when most of us have been very active driven individuals before hand,they give us pills for pain etc ,wouldnt it be great to give us all a pill for exceptance?for me this is the hardest part;( so never feel feel bad for feeling bad ,all i hear is think posotive by other folk ,its hard and easier said than done ,keep well and know your not alone in this ,brave ;)

  • P.s sorry for spelling mistakes ,i cant blame it on brain fog ,i just cant spell ,lol;)

  • Thank you everyone, I am feeling a bit better today although had another rubbish nights sleep so still off work today... But decided to see it as an excuse to treat myself to some new pillows (!), some nice lavender spray and many other treats oops, so hopefully I can be back in work tomorrow.

    I recommend treating ourselves (might go bankrupt soon though hehe!)

  • Before lupus I used to go on holiday twice a year. The pain and tiredness prevent me from enjoying myself. I wish to just have one month pain free or to look in the mirror to see the old me not the steroid designer body this illness has given me!

  • Really steriod designer body lol! It beats my imagination how this disease has completly changed me. But I have to take every day as it comes.

  • bless u. Having had SLE 4 over 18 years now, apart from a really shitty time when I was initially diagnosed, I still managed 2 hold down a full time job, have 2 lovely kidlets & live a relatively 'normal' life. However, 2 years ago I started having a flare up (despite my ANA coming back neg, but when u've had lupus 4 a long time, u know u're body better than any1). I've had 2 give up my job, which I absolutely loved, as my Doctors have all said it's either work, or quality of home life, my body (& mind) cannot cope with both any more. I even cut my working hours right down to 16 a week, in the hope that the flare would soon pass but 2 years later, I'm in pain in some way every single day, I could sleep 4 a month & STILL be exhausted, u all know the score, but because I LOOK so well, I'm obviously exaggerating or putting it on. We all have 2 find our own way as it affects us all differently, as do the various meds & although many of us put on a brave face, it helps 2 have a rant or just ramble on sometimes. Big hugs to all u 'Lupoids' out there x

  • Sadly, I feel cheered up to know that others feel as grotty as I do today and that it is not all in the mind. Wishing you all better days. x

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