Lupus SLE suffer

Hi I'm Nikki. I have lupus. Sjrogens + never spell it right). Raynards. Osteoarthritis. Slow thyroid migraines. Tumor on my patuatory gland and 4colapsed lumbar disks! Apart from that I'm great!! Lol. Oh and I'm pre diabetic with sugars averaging 10.5 to 12.7! Lol. I work 9 hours a day 5 days a week and life is miserable. But I'm a stubborn mare and refuse to give in. But in reality is love to stop work and just rest 😴. Anyway that's me. And I'm soooo glad I found this site and you are ALL like me! Wow I am NOT a freak! Who knew? Hi everyone it's nice to meet all you special wonderful (same as me yippee) people.

[Spotty-ewe]

Hi Nikki,

Welcome to the community. I have SLE and some of your other conditions too but not the tumour. You’ve been dealt a really lousy health hand and I’m so sorry to hear it. But you’ve come to the right place for support from all the lovely members here. 🥰

That is a LOT of hours to work each week. Is there any chance of cutting them back to at least half of that? I don’t know how you cope.🤷‍♀️ You must be a strong and wilful mare right enough. 😂 But don’t knock yourself up! Life is too short and too precious for that.

Take care. 🤗 Spotty 💕

[Hidden in reply to Spotty-ewe]

Thanks spotty I really appreciate your comments. You don't know how much! "Normal people" never say what you say. They just say well you look good if you got all that lol. It's so nice to say things that people actually get without explaining. So thank you 😊. I don't cope to be honest. My work life is just..... Come on just another hour till next break and you can sleep in the car for half an hour! Or it's nearly over then I can go home and sleep! I wish my work days away😡 but if I cut my hours I'm going to be put on a flexi contract which means I could work till 10 one night and back at work for 6the next morning!!! Now that I can't do. At least I do stable hours with reasonable rest between my days. Iv been with my company 10 years so I have a little protection. And iv tried for other jobs but when I tell them what is wrong with me the job iv been offered suddenly has been given to me by mistake yadda yadda lol. Iv been told to claim disability but to be honest my mind is so foggy and I'm so exhausted most of the time the forms are so long and complicated I just give up. ( You wouldn't believe I used to sell multi million pound deals would you before I got I'll lol. Sorry it's a bit long but thanks for the reply. I actually feel at home here for the first time in 14 years! The only other place I feel normal is with my Ruematologist 😁😁😁 he's wonderful. Thanks spotty nice to meet you👍👍

[Spotty-ewe in reply to Hidden]

Oh yes, I know that saying “But you look So well!” If we had a £1 for every time we heard that we’d be millionaires! 😂 I see your dilemma with your work - not easy. And I fully understand the feeling when confronted with long forms. Ugh!😩 My husband isn’t much better for different health reasons, so we struggle with stuff like that. Anyway, we are heading off to Keswick for the weekend so I’d better go. Write as much as you like Nikki. Always good to hear from a fellow Lupie. Take care. 🤗😘 💕

[Hidden in reply to Spotty-ewe]

I'm sorry to hear your hubyis poorly too. Iv always done Al the form filling but those are just a step to far 😡😠I hope you both have a lovely weekend and I just love that..... Fellow lupie!!! I'm officially adopting that lol. From Nikki .... Fellow LUPIE!!! Haha👍🤗😁

[Spotty-ewe in reply to Hidden]

Hubby had open-heart surgery last year (to repair his mitral valve) so has to be careful because his heart rhythm still isn’t right. 😑 BUT we are going to do some hill-walking tomorrow (weather permitting) at our own slow pace admiring the views every few minutes when the going is tough! 😂 We feel so much better for it straight afterwards with a wonderful sense of achievement, although I have to rest up for days afterwards, but it is worth it. 👍🏻

Regarding you asking for a fan at your work. Would they object if you took your own in with you? Might be worth it just for the comfort.

I hope you have good weekend Nikki. 😁Best wishes from one Lupie to another! 🙏🏻😘🤗

[Apricot100]

Hi nikkisrf, I too have SLE, RA, and some of hour other fine collection, but certainly not all. That's a big list you have and god only knows how you're managing to work those hours!?

Please look after yourself. I suspect with that dedication to your job you are doing a really good job of it so perhaps your employers would look kindly on a reduction of hours request?

Take care xx

[Hidden in reply to Apricot100]

Thank you for your kind words lovely ❤️. As iv said before it's so nice to hear from people who understand makes a great difference for me so thank you 🙏😊

[DaftCat]

Welcome! I have SLE, ulcerative colitis, asthma, inflammatory arthritis and I suspect I have sjogrens but that hasn’t been clarified yet. I’m newly diagnosed with SLE and have found this forum very helpful and friendly.

All I can say is pace yourself, which is easier said than done! 9 hours is a lot. Do you get regular breaks? Have you had any reasonable adjustments made?

[Hidden in reply to DaftCat]

I have 3 half hour breaks I usually sleep in my car on two of them. Iv asked repeatedly for a fan because I suffer terribly with high temperatures and low grade fevers. But to no avail unfortunately. I wouldn't know what else to ask for to be honest. It's nice to meet you though daftcat 😁

[Wendy39]

Hello

Nice to meet you. And welcome to this wonderful support group.

It's the best support you can find and the knowledge between all of the members is amazing.

Best wishes

Wendy

[Hidden in reply to Wendy39]

Thank you Wendy. It may sound cheesy but I finally feel at home with people who really understand. And iv read soooo many things from people that have already helped so much. So thank you everyone ❤️

[Wendy39 in reply to Hidden]

I joined here when I was diagnosed in October 2013 and I’d be lost without it! Lupus can be difficult to live with and at times I’ve felt isolated. Even my very lovely close friends do not really understand so this place is where I can me honest and totally open and know everyone gets it. So glad you’re here.

[Maureenpearl]

Hi Nikkisrk,

Welcome, I hope you will find lots of useful information on this forum.

[Krazykat26]

Hi Nikki

Welcome to lupieland!! 💐

You've definitely come to the right place to learn about all things autoimmune..there's more of us than I thought!!

This site is informative n supportive n very active which is surprising considering the nature of our illnesses!!

Great to meet u 🤗

Kat xx

[Hidden in reply to Krazykat26]

You to Kat great to meet you and yes it's very active considering we are all suffering exhaustion lol. And yes I felt on my own for years!! Now there's thousands of people like me and they are all in my phone.....not to heavy to hold I can type with my phone on the sofa and even use my stylus pen when my hands are to painful!! Win win. It's like Christmas has come early for me lol. So nice to meet you all. Xx 👍😁