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Autoimmune disease

Just feeling sorry for myself

8 replies

Schlerp · 03/03/2022 18:30

Sorry I just need to get all this off my chest & this seems the ‘kindest’ place.

I take biologics for an inflammatory arthritis/vasculitis and for the past two years I’ve been really healthy (of sorts). Until Christmas. I’ve been on antibiotics for different infections 4 times since Christmas and also had covid with lingering symptoms since then. I feel like crap. I feel like I’ll never get better.

I have two kids, one of whom is autistic & low grade challenging with PDA (this is more debilitating than the autism) I’m doing a research postgrad which I’m loving and is my escape from the shit life throws but the communication is dire and that’s meaning I’m regularly having to choose between uni and dr appointments and the department are on my back if I choose doctors. Disability services are trying to mediate without much luck.

My OH is working night shifts for the foreseeable meaning I’ve got all the ferrying around to do for my autistic child’s social clubs which are imperative to her routine. 99% of the time this is fine except on a Friday when her club doesn’t end until 9.30 and my youngest will be well asleep by then. I can’t carry him upstairs so can’t let him sleep in the car, meaning she either misses it and has a massive meltdown or walks back herself. It’s really not far (under 5 mins) but a very dark unlit path through a park. She’s only just 13. My mother was coming to stay this weekend but won’t be arriving until Saturday so can’t help out and won’t come earlier as she has a night out on Friday.

On top of it all and the most mundane but upsetting part is one of my few friends messaged me asking me not to message them for a while as they were too busy to communicate with me for the next few months unless it was an emergency (I totally understand this as they have their phd hand in & viva due but I’m meant to be their proof reader which will be hard if I can’t communicate with them) So within an hour of this they were posting on social media pics of them at a hot tub holiday lodge with mutual pals and champagne.

It’s just one of those days. Feeling unwell, my kidneys are on fire and I’m just a wee bit lonely.

OP posts:
NotquitewhatImeant · 03/03/2022 19:26

Cake , Brew and Flowers OP. That’s such a lot to have to deal with if you were feeling well and when you get run down it makes everything so much harder. I’m sorry I don’t have any suggestions to make it better - I know it’s incredibly annoying when people say ‘get more support’ because you can’t just magic it up. Your friend sounds thoughtless - although a group hot tub sounds gross so she can keep that! Vent away, sounds like a hard day and I hope tomorrow is a little easier

Schlerp · 03/03/2022 21:34

Thank you @NotquitewhatImeant!
The biggest issue is the constant infections and stupid post covid cough irritating my asthma. I think the rest I’d be ok with if I wasn’t peeing ten times an hour and having to take strong painkillers for my kidneys.

I never got ill on my previous biologic but it also didn’t work as well for my joints.

OP posts:
Cleanbedlinen12 · 03/03/2022 21:41

Another 💐 that sounds really rough. Your friend sounds awful tbh. And who wants to be in a group hot tub and posting it? Surely they should just be enjoying it. Though it does sound a bit grim as not quite says. I hope a good nights sleep will help and you get some help soon. Definitely give yourself a hug for being utterly fab and strong and amazing x

Schlerp · 06/03/2022 21:27

Thank you @Cleanbedlinen12 - you’re right about the group hot tubs! I’ve been told by my rheumatologist to stay away from hot tubs as they’re Petri dishes for infection 😂🤢 - I think perhaps I’ll be too busy for the proof reading. It’s not like I message this person more than maybe once or twice a month unless related to proofing their work.

It’s just a bit shit to be told don’t message me I’m too busy then to bugger off on holiday.

Off the antibiotics now but wondering how long until next time.

OP posts:
Cleanbedlinen12 · 07/03/2022 22:09

Oh gosh I totally get that. It’s rude and disrespectful and shows you what kind of person she is, I.e. not someone you want to be sharing hot germy water with. Honestly you are better off with a cuppa and a good book.
Bet the champagne was sour and nasty too.
Actually a hot tub in a 5 star hotel under palm trees with an ice cold vintage bollinger then , well, maybe. Showing off about some naff cringe fest then, nah. You had a narrow escape!

Cleanbedlinen12 · 07/03/2022 22:09

Hope you are feeling better 💐

Schlerp · 09/03/2022 16:38

Haha yes!

Now dealing with ignorant sister who doesn’t understand the concept of being too poor to take parents out for dinner. They’ll drink a lot of
Alcohol and I’ll be expected to pay half when I don’t drink alcohol and only get the cheapest main.

OP posts:
Cleanbedlinen12 · 09/03/2022 18:44

Oh gosh I’m with you there. Can you level with her? Or them? Or say you’re broke so you’d like to go to x? Surely they’ll get it if family. Or mum and dad will if sis too dozy. Had this with an overpaid brother and the bill was insane. And we hadn’t discussed it first so I assumed he was paying as he chose the place. He got a bit miffed when I said no! Good luck!

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