Why me .....: Just once I would like to wake up and... - LUPUS UK


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Why me .....

stillsdisease profile image

Just once I would like to wake up and be pain free. I’m normally positive but you know those days where you feel sorry for yourself well today I’m feeling sorry for myself. I will have a cry, a hot bath, tea and then more tea and allow myself pain relief again today despite the consequences.


Moan over until the next one, thank you for listening.

51 Replies

Oh no stillsdisease, I am so sorry you are having a lot of pain today.

I know I have been sorry for myself too the past few days and like you said it’s okay. We have to nurture and be kind to ourselves.

That’s a good idea to have a hot bath (with Epsom salt is best), some delicious teas (and maybe a shortbread or two or some scones?) I bake a lot when I feel down but when I am in too much pain I just watch a nature video and it soothes me.

I hope you feel better very soon ❤️💐🍀

Aline xxxxxxx

Oohhh nature videos, good idea thank you.

I hope you find it as soothing as I do 💝💐.xxxxxx

I remember the first David Attenborough series early 80s, there had been nothing like it before and we were amazed. So amazed that taped the series in vhs tapes for the children to watch when they were older! My, how things have changed in technology and the planet since then. 🦁 🐘 🦏 🐯 🐒 💧 🌳 ☀️ 🔥 ⛈ 💨 🥵 🦠

Oh I absolutely adore David Attenborough’s documentaries 🤩🌺🌸🌳🌲🌾🦩🦜🐐🐾!! My late dad used to tape the documentaries for when I would come visit him in the summer. It was my dream to become a wildlife filmmaker when I was little.

Climate change is strongly felt for sure: this year alone in BC Canada we had a massive heat wave, a fire that destroyed an entire small town, and in recent weeks, massive rain pour leading to mudslides , towns needing to be evacuated, and many roads needing serious repairs. This is insane. I am in a relatively safe area but I feel really saddened for the farmers, livestock, and people who lost their homes.

Those events were covered on the BBC news here in UK - shocking proof that we must take action. Glad you are safe but heart goes out to those affected.

You can moan all you like Stills and we will listen and sympathise with you, it’s good to vent . I’m so sorry your in so much pain, life sucks sometimes. Enjoy your hot bath and hope the pain will ease abit 🤗💞

Second cup of tea in and life’s not so bad 🙃thank you.

Aww stills 😔come here n give me a huge gentle cyber 🤗🤗🤗🤗💐Yes I think we all have said "Why me?" I know I certainly do..regularly!!

It's awful to wake up in pain..it's so hard to even get out of bed sometimes..you're not alone!!

I've got a nice big shoulder here if you wanna lean or cry on it. A good cry always helps me..it's kinda like pain relief in itself!! Release some of the pressure.

I have found recently that it's better to take my pain relief before it gets too bad..before I would wait n wait until the pain got unbearable but now I take it when I feel an episode coming on..I've found that helpful. I take tramadol when necessary so I counteract any unpleasant side effects with dried apricots or prune juice..helps keep me regular!! 💩

You are a very positive person but hey..everyone has off days!! Be kind to yourself today n rest up..treat yourself to whatever gives you pleasure/comfort. I think I recall you telling me that buying new knickers always cheers u up?!?! 😉

Meanwhile I'll tell you a little story. I went for a blood test on Tuesday and we had to go on foot. By that I mean hubby's actually on foot n I'm in my wheelchair. My knees get really cold despite a wheelchair cosy bag thing so I decided to wear some leg warmers under my trousers (like stockings). We were out for a couple of hours n when I got home I took my legwarmers off saying 'well they worked well'...ONLY to discover that they've made my knees break out in a rash!! 😹I now have spotty knees!! 😹

Take it easy stills n I hope you feel better real soon 🤗 enjoy your bath 🌈😽😽xx

Yep that made me smile, I love leg warmers! 😉

I am so sorry you are feeling down and constantly in pain. It drags you down doesn’t it? You are entitled to have a moan and tell us how you feel. What relaxes some people stresses others so think of your favourite thing you like to do to relax and if you’re able to then do it. Forget any chores you think you need to do or organise- just chill. Get that pain relief down the hatch and let us know how you are feeling throughout the day. We are all thinking of you and are here to talk to. Lots of hugs sent to you. You are a shining star on this forum and have helped me understand and cope. ❤️❤️❤️❤️❤️

Thank you so much for your kind comments, they are a tonic themselves 😃

I’m sorry Stills. On forum you are very upbeat but none of us can maintain the “joy” lol of our illness. Can’t hold in all theSadness when pain is front and center in our lives. I’m personally envious that you can take a hot bath!!!! Lupus and other disorders causes terrible reactions for me even a hot shower. I miss bubbles and girly fragrances 😊. Sometimes when I’m feeling very low and pain is the reason I add NSAIDS to my mix. They make me sleepy but the relief is worth it. I hope the day gets better for you🌺

Ashamed of my out burst in the face of what others endure. Thank you for your lovely reply 🤗

Don't be ashamed. You are human! A human with a horrible medical condition. If you can't have a rant on here about how crap it is then where can you?

Be self-compassionate and give yourself a break. You are human not super woman. I bet she had off days too!x


Take the pain relief,just make sure you eat and drink.If you get heartburn/ indigestion it makes everything worse. I speak from experience.please don’t expect too much from

Yourself XXX

Thank you, I will do both, I appreciate your message 😀

Hope you are feeling a bit better today.

stillsdisease profile image
stillsdisease in reply to Roarah

Thank you 😊

So sorry you are suffering so badly

Thank you, I’ve followed advice from lovely people here and feel a bit better now 😃

I may have inadvertently sent half my message to you 🙄the whole message should have read-

'So sorry you are suffering so badly Stills. You ARE allowed to feel sorry for yourself, we can't make it better but we care💗



I am so pleased you feel a bit better stills, there are such lovely, warm, caring peeps on here Xx

Soooo sorry to hear this. Let's hope tomorrow (and lots of other tomorrows) is less painful.

Sending gentle hugs, 🤗🤗🤗

stillsdisease profile image
stillsdisease in reply to MEGS53

Thank you and if I go to bed early tomorrow will be here sooner 😁

MEGS53 profile image
MEGS53 in reply to stillsdisease


I hope you are feeling a bit better, but you never have to feel bad about letting us know how you feel. You give so much encouragement and support to all of us all the time. I think it is a good thing to vent for your body. Keeping you in my thoughts.

Healing hugs.

Than you, your kind words have made me feel better as have all the messages here 😊

So sorry you are having a bad time, you are allowed to feel sorry for yourself, we all are..Hope you get some relief from your pain soon...jx

Thank you, I am coping better now with all these lovely messages 😀

Pleased to hear you are feeling a bit better. Lots of love x

stillsdisease profile image
stillsdisease in reply to BonnyB

Thank you, yes today IS a new and better day 😀

Hi stillsdisease

Hope you are feeling better today. I know you had lots of lovely replies yesterday. We all have them days it's only natural - hope you had a lovely warm bath and cuppa and got some rest in and the pain has subsided for you even a little bit.

Sending you hugs and healing power xx

stillsdisease profile image
stillsdisease in reply to Simbob

Thank you. I’m coping again now. It was as you say one of those days !Normal service has resumed 😀

stillsdisease profile image
stillsdisease in reply to Simbob

PS: I’m having face time call with my grandchildren later and that is very good medicine! 😀😃😄

Simbob profile image
Simbob in reply to stillsdisease

Haha I love that! Awww enjoy the catch up with the grandkids ❤️

Hi everyone I’m sorry to hear your feeling poorly and in pain.

I too have had the same in lots of pain no sleep and then like a zombie in the morning. I’ve cried got cross and due to brain fog can’t think what to do next so it’s bed day. I’d like to just say none of you are alone for us suffering with these awful conditions your never alone as someone else is feeling similar things but only as individuals you know hot it feels.

I try to keep smiling and like to be here to any of you that may also be suffering. Gentle hugs to you all 🤗Xx

Thank you for your reply and I hope your day in bed gives you the rest and sleep to help you cope. Sending hugs your way 🤗

Can you imagine waking up and not being in any pain (one day I hope 🤞). I would think there was something seriously wrong with me before I realised its just a sensation I haven't felt for many years.

I hope we will all get to experience that pain free existence again!

It's amazing how much tea helps!

Hope you have a good day x


I am so very sorry that you feel so awful. A good cry and a few cups of tea are surprisingly effective. Do something nice for yourself, wrap up and relax with a good book, a big bar of your favourite chocolate and some soothing music. I hope your pain eases soon xxx

Thanks CP I’m in control again today and I’m ashamed of my outburst when many here face much harder days. The forum response was amazing and cheered on throughout the day and although the pain remains my mojo has returned 😀

Ashamed? Never!!! Your frustration and sadness is valid. I am so pleased that you feel more in control but you honestly should not feel bad for feeling as you did. Sometimes it just has to come out. Take care xxx

Hope you’re doing a bit better! I completely get it, feeling rubbish drags us down.I’ve spent the last couple of days with blankets, early nights and Disney+! Always my go to routine when I feel pretty rubbish.

We’re creatures of habit. Thanks for your message- tea and toast works for me 😉

Ha! Funnily enough I am a coffee drinker all the way! But being a midwife feel tea and toast gives me a sense of identity without identifying myself 😉😂

A midwife how wonderful to see babies coming into the world 😃

I’m sorry you are in so much pain. This cold weather is not good for us. Hope that the pain eases soon. Xx


Hello Gloomy Eeyore, I feel more like donkey from Shrek today 🤣

🙏 I’m late to this but I’m hoping you’re having a better day today 🤗

Thank you, I’m more buoyant now 😀

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