LUPUS UK

So exhausted 😣

Been hit hard from the beast from the east. As an agency nurse went up to Dundee (68 miles away) last Wednesday for a 1:1 observation. Was supposed to go home that night then all hell broke loose with the weather. My patient couldn't be transferred to Glasgow and I couldn't get home. Ended up having to book into a Travelodge and working six 12.5hr shifts and a 6hr yesterday as neither of us move. Eventually got back late afternoon yesterday and quickly went into a shop, came back out and car was completely dead!! Had to sit there for an hour before help arrived 😣. Up early this morning to get my bloods done and now virtually can't move. I'm so tired and sore that my first day home will be spent in my bed. Welcome home

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Oh Carol 🙁 that was a DOOZY. I think you are AMAZING 🌟🌟🌟🌟🌟. Just wish you didn’t have to suffer so much....lupus getting its own back. Am v much feeling for you 😘🍀😘🍀 coco

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Thanks Coco for your lovely sentiment, appreciate it 😁. I really couldn't do anything else as the patient desperately needed the support of a psychiatric nurse. Being in a general hospital, there was no staff they could pull from and they were also struggling with staff shortages. I could've just relaxed in the hotel until safe to go home but I couldn't have done that knowing the situation. Well, will just need to accept that I'm no longer able to work that way without consequences to myself and it's now my time for some TLC. Thanks again Coco, hope you're well ☺

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Hi carol I didn’t realize you came from Scotland to I go to Ninewells for my treatments I’m under Colin Baines where are you from x

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Oh by way I’m a behcets sufferer survivor I think lol x

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Hi Curly, hope your well. I'm from just outside Glasgow but was a lodger of Ninewells for 7 days lol x

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I’m from fort William I just go there for my infusion I get infliximab every 8 wks and isloprost every 12 wks over 4 night so feel like one of the staff they are gems in there I really don’t know how they do it iv been going for 4 years now and it’s getting worse the system is so broken now how are you finding your azathioprine now it took a few month to feel benefit from it that and cholchachine were main two that’s made my life easier x

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I was taken off it. Was ok the first 4 weeks on 50mg but the week it was changed to 75mg I felt awful. Flu like, lethargic, pains and my liver enzyme levels had went up quite a bit. Bloods/enzymes have normalised so I've to try it again, not keen to do so tho. At rhumatology clinic at the end of the month so will discuss it further. Your treatment sounds awful to me, don't know how you cope as I would find it very difficult x

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It’s what we have to do to stay alive lol I sent you a p m I’d forgotten wed spk before I’m a belter my memory is shocking xx

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Another thing in common then, shocking memory. I put everything into my phone and also bought a calender as a back up x

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Sounds like the beast from the east met its match in you, lupus or no lupus. You're a solid gold hero. Have a heroic type chocolate hobnob or three x

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Oh, I love your way of thinking Mike....... medicinal of course 😁. You would've done the same, just a pity it's a full body protest now. Hope you're keeping well x

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Hopefully you will get your well deserved rest now that you are safely home. Bravo you for making a difference to others through your skills & support through really challenging weather. Blue skies down south at last, with our daffodils 🌻 having survived being covered in snow, amazingly resilient, along with our garden birds. 🐦🐦🐦🐦 ml

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Thanks Maggielee, still resting. Took a lot more out of me than I thought. Glad to hear the blue skies have returned, same here actually, long may it last 😁😁

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I have nothing but admiration for you, what a trouper. Sometimes we protest against these conditions and try to carry on regardless, then suffer the consequences. It's hard to accept our limitations, but we must be kind to ourselves. Hobnobs sound great. It's people like you who make Britain great. I do hope you are rested and feeling a little better.

As a footnote, I was waiting for an appointment yesterday and a lady behind was in full rant about the failures of NHS staff. It's a wonder I had any tongue left, I had to bite it so hard to stop myself saying something. Sure, like any other organisation, hospitals have their failings, but there is much to celebrate still in this country and so many staff go 'above and beyond'.

June

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Well said June and it’s normally the nurses on the floor that take the abuse when really it’s the government you can’t expect to take billions out of a system and it not to be broken when I’m in Ninewells they are so understaffed they hardly ever get there breaks and are always late leaving can’t praise them enuff and carol is just proof of the front line nurses going above and beyond just a star ⭐️ x

Curly

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Thanks June. Still resting today and wrapped up keeping warm, there may be blue skies but it's cold. Doesn't help that my boiler broke last night so no hot water or heating, waiting on the engineer. Not really been my week lol. I've heard so many people ranting about the NHS. Don't get me wrong, sometimes it's justified but it's not the nurses fault, they are all just trying to make the best of a bad situation, especially at times like this. I think for some folk that walking in the footsteps might be a good lesson learned. Thanks very much again for your kind words 😁

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I remember the feeling well CaroleMcl, but I was much younger then and lived in. As a nurse living on site you were the first port of call in these situations and worked long shifts. However, I did not have a journey either end and the exhaustion that you feel now. Well done you. I do hope its not too long lasting. I'm sure the other staff really appreciated your help and support.

My sons girlfriend is a nurse at Glasgow. She was snowed in for four days. She said they were so tired but the camaraderie was amazing between the nurses and their support staff.

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Thanks johare. I didn't stay in, didn't want to leave the comforts of home 😊. I'm definitely glad to be home as my body has given up and demanding me time, all aches everytime I move. Once the gas engineer had been it's back off to bed for me. Thanks again for your support, keep well

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Hey Carol how are you feeling Now? I meant to reply early to give you words of gratitude for all your hard work. Your role us so important and I am sure your patient will be very grateful as would the staff. Sounds like a hard time even for a completely healthy person. I hope that you have been able to pace yourself a little and that you are now showing yourself some compassion and kindness xxx

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Thanks Sam, very kind of you. I'm still a bit tired, can get up around 9 and feel fine but by 12 I'm starting to feel drained again. It was a long week but I'm grateful that it's now mainly just fatigue and minimal joint pain. Thanks again 😊 x

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