Am I going mad? Or is this the evilness of lupus ? - LUPUS UK

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Am I going mad? Or is this the evilness of lupus ?

Pegy profile image
Pegy
5 Replies

I spent most of June 2022 in hospital due to massve skin flare where I had to prise myself off of my bedsheets with blood dripping out of my sores yeah tell me about it! Ambulance called hospital admission & I was treated like a burns victim . Apparently I not only had my usual flare, but I had blisters!! Medical photos taken extremely strong steroids prescribed to cal my mmune system down/get it user control. Then a few weeks later had psychotic episode due to steroids , now I have to use a stroller to go anywhere, back aches constantly, arms you name it every joints are painful - never experienced that before. To top it off they rhink I have lung cancer 🤬 biopsy Wednesday! My boys think I’m loosing the plot😞 I’m frantically trying to out my evidence together for PIP & in my 2nd extension to return my change if circumstances! This time I’m ready for DWP to try dispute my claim 🤣🤣👍🏻 But along with this I’m geting more forgetful !

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Pegy profile image
Pegy
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5 Replies
svfarmer profile image
svfarmer

Hi Pegy what a truly awful time you’ve had the last few months. Sounds so painful with your skin and blisters. Don’t worry my sons regularly think I’ve lost the plot , but on a serious note how frightening to have a psychotic episode, I didn’t know that could happen with steriods. I had a review last year of my PIP and they awarded me a higher rate, just remember to put a day in your life on your very worse day not when you have “good days” as if you put you have good days they will focus on that.

I hope you get your test results very soon after biopsy on Wednesday as at least you know what you are dealing with - I had ovarian cancer last year and the worst part was waiting for test results. Please let us know how you get on and sending a big hug to you 🤗😘

Pegy profile image
Pegy in reply to svfarmer

thanks for all that advice & confirming It’s not just my sons that think I’ve lost the plot👍🏻 I’m ready for my PIP review believe you me! On my 2nd extension of deadline date to return form & evidence as past few weeks it’s been hospital appointments for something else😮‍💨. Biopsy results not back yet as one test had to be sent to London as they have specialist equipment there ‘wherever ‘there’ is🤣 got another dermo appointment on 7/10/22 so fingers crossed for that one. Sadly to say I never have a good day anymore, I’ll try to post a video. Xx ❤️❤️❤️❤️😘😘😘😘 to everyone & all stay safe

MusicalFurbaby profile image
MusicalFurbaby

Hi Pegy, so sorry to hear about all the dramas you have been through recently—enough to last you a lifetime! My friend experienced psychosis after taking steroids, so you’re definitely not alone in that experience. What a nightmare. No wonder you’re losing the plot, I am sure I would if I were n your shoes! 😜

I truly hope you get some answers and relief soon. Take good care of yourself. I highly recommend cake for self-care, and snuggly blankets, and movie marathons. Let us know about your test results, we’re rooting for you!

CecilyParsley profile image
CecilyParsley

Hi Pegy. I am so very sorry to read your post and hear what you have been suffering with. It truly has been an horrendous time for you bless you. It makes me feel ashamed sitting in tears over a few genital sores. I cannot imagine how painful your sores were, and I sincerely hope that they at least have started to improve for you. Then to have a psychotic episode from the steroids must have been so frightening. I have never experienced it myself but I am aware that others have. You are amazing to have come through this and begin walking . Never worry about the Walker, I had one to get me back on my feet and now I use two sticks. Hopefully your biopsy results will be back quickly and then you will have a treatment plan whatever they reveal. Please keep us updated and the very best of luck with your PIP . Big Cwtches xx

Lily25 profile image
Lily25

Hi Pegy, I dont have any advise for you, but sending you lots of hugs and love. 🤗🤗💜💜💜

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