Good days and bad days, the mind games of lupus

God day - When, despite the pain, you can feel glamorous, in your dressing gown, even sitting in your chair, enjoying indulgent chocolates and a great cup if tea.πŸ˜†

Bad day - when the pain of the previous night results in you being unable to bear your own reflection as the pain is etched across your face and your eyes have the hollow look of hopelessness.😭



May the universe give you the strength you need to smile today. 🍦

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  • Hi Amandalilley, thanks for sharing a hopeful, uplifting post & reminding us that living with Lupus is frustrating but not all days are bad ones. I enjoy & am

    thankful for every good day cos' that can change any minute. I've become more aware of this since my Lupus & 8 other health conditions have been triggered.

    It's changed my life for the better in a way cos' I take better care of me now & I'm coping better with my health trauma then I have with others. A near death experience renewed my faith in God. Regardless of all my health issues, God has given me the strength to get thru' it. Every day is full of Challenges but also full of insights & blessings. Yes I have bad days but I try to understand them as temporary fixtures that are probably more about a loss of what I used to do when I was healthy & active. I support myself as my family don't cope very well with my health issues. I try not to look back on the past, focus on the present so that I can have a future. I wish you the same.

    Stay positive & keep the faith x

  • I LOVE the way you're thinking, amanda...and, following on from this + your BRILLIANT story in that other post today, here is that quote from david baddiel I mentioned in my earlier reply...I had just read his beautiful & VVVVV moving Sunday newspaper article about caring for his father who has dementia....& why he is partly basing his next stand-up routine on I read, I'd thought of those of us here on forum who, each in our own ways, share his convictions & motivations to one degree or another:

    "I am not given to silence. The more difficult the subject, the more I prefer to talk about it....the impulse behind wanting to do a show like this stems from the conviction that laughter is the best - and indeed the only - way to grapple with this stuff. It's a childish impulse, to some extent, which comes from the knowledge that we can't defeat death, dementia [my insert: immune dysfunction, connective tissue disorders...whatever] and the rest of the horrors time insists upon, so we may as well make fun of these bullies as they take us down."

    On bad days, laughter is much harder for me...but if I can manage even a chuckle...I do cope better with the bad days!πŸ€—πŸ˜‰πŸ™ƒ

    πŸ€πŸ˜˜ coco

  • Thank you for your response. The quote was very moving.

    I hope my 'the funny side of lupus' posts help you through the bad days and allow you to smile.

    I also hope my posts ' the darker side of lupus' the bits we rarely discuss, will enable the amazing people, like yourself to no longer be afraid to TELL IT HOW IT IS, instead of hiding behind the system, drs, and consultants and fear.

    After 20 years, I will no longer hold my tongue, pretend that the pain is not that bad, say i am ok when I am not and pretend that lupus is just that lupus.... lupus is a manipulative, nasty, mind bending, painful, frustrating, chameleon pig of an illness, omg, sorry.... lol started to rant. Apologies, u understand what i mean. X

    Enjoy your day and may your smile turn to chuckles. Much love. Mandy. X

  • YES to everything in your reply πŸ‘πŸ‘ŒβœŒοΈπŸ‘

    Maybe it's because I'm a libra (life is all about balance), but I can't cope without looking everything in the face: the light & dark, the happy & sad, the funny & serious.

    So, my mantra is: Tell it like it is....and I like your style v much

    I'm so glad you're here, Mandy

    πŸ€πŸ˜˜ coco

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