Suppressed immune system, back to back illness, how do others cope with this?

[ChronicIlness]

I should probably post this on the health board but it doesn't seem to be as active as this one. I think I'm just in need of a rant tbh after spending yet another week in bed, too sick to function normally.

Is anyone else living with a chronic illness, suppressed immune system and seems to catch EVERYTHING going? Aibu to be utterly fed up with this?

How do you cope? I have children so I can't exactly lock myself away in a bubble. I have a job that I'm a few steps away from loosing due to my time off sick. My condition itself in now well managed but I have back to back illnesses due to my suppressed immune system and it's slowly ruining my life!

I tell people time and time again to stay away or let me know in advance if they are sick, so that I can decide if seeing them is worth the risk. They don't listen and meet up anyway as they are only feeling a little under the weather etc, then i'm basically rendered incapacitated for weeks due to the common cold!

My colleagues understandably don't take time off when they are sick, if they feel well enough to come in and do their job, So there's absolutely no way of me avoiding catching bugs this way. Working from home is not an option for me.

I have tried to apply for PIP and ADP due to the affect of these constant bugs/sickness and my chronic illness itself and I've been knocked back multiple times as I'm not 'disabled enough'

I don't know what else I can do here? It's coming at me from all angles and apart from my immediate family, I have absolutely no control over the precautions other people take. I get it, my health is very much my problem but surely there's something I'm missing here? 😵‍💫

Is there a hope it might improve?

@QueenCamilla No hope of improvement unfortunately but it can be managed to an extent.

What about a vitamin C infusion?

That would likely boost my immune system. My goal is to wipe it out with my treatment.

Yep, I'm severely neutropenic permanently

I WFH as a reasonable adjustment, and if I have to go into work then anyone who is unwell has to WFH that day or I don't go in
I do use an injection to boost my neutrophils which helps but my weak spot is tonsillitis

@ChronicIlness I'm sorry to hear that there isn't a definite light at the end of the tunnel, as that must be very dark and difficult.

I suffered weakened immune system for nearly a year post a septic infection and surgery. I just couldn't get back to normality mentally or physically - it was as if everything my body ever had to give was spent to keep me alive for that awful week and nothing else was left.
It was enough for me just to enter a public space with people around and I would have no voice and swollen tonsils the next day. I did lose my job and did burst out crying at the job centre as I didn't feel I'll ever be able to work again.
I understand how incredibly difficult the circumstances you're facing are 💐

I did get better one fine day (I still struggle with fatigue but the immune system seems to function). Maybe a coincidence but I took a turn for the better soon after:

Gradually exposing my skin to longer periods of sunshine, particularly in the mornings

Vitamins D, C and Iron

Pre-biotics and Pro-biotics, with particular emphasis on Pre-biotics via food and supplements of Pro-biotics.

I would cook and eat beef stew and bone broth regularly.

Most of this⬆️ was based on reading the latest immune research articles.

I hope it gets easier for you OP!

Just saw your update.
Don't do the sunshine if inflammation mediated via active immune system is a problem.
The rest could be very beneficial still.

Luckily I get DLA and ESA, I don't know how I would manage if I had to work. I'm constantly knocked down by infections. Since Christmas I've had a kidney infection, tonsillitis, a sinus infection and a burst eardrum. Plus the day to day of my chronic illness.

Is there anyway you could apply again? Did you send in masses of medical evidence?
You are obviously on strong medication.
Did you show you are unable to reliability and safely do the activities?
The forms are an utter nightmare but if not filled in with maximum evidence can often be turned down. And always fight them to tribunal as the assessors do lie/leave out what you say in your interview.

***before anyone starts, I have more than enough right to be entitled to these benefits, I'm not encouraging OP to cheat the system, she is obviously struggling with the side effects of her long term condition.
I would much rather be at work earning 3x as much as I get in benefits, not have pain and constant infection (but hey free money right?)

@Parrotpirate Thank you for your reply, it sucks, doesn't it?

I have appealed multiple times and have always been knocked back. I think it's due to the fact I am able to work very reduced hours, with lots of reasonable adjustments in place. They see that I can do this on my "good days" so use it against me. I've submitted plenty of evidence from consultants and doctors and nothing has helped.

If I was able to lock myself away in a bubble forever I would probably be able to live a reasonably normal life, it's the exposure to others that causes my problems.

I end up staying in a lot

Went out for a Christmas meal, caught Covid, off work for 3 weeks and on antivirals
Went for another meal, caught campylobacter and ended up in hospital
Went for a coffee, got tonsillitis

You have to laugh or you would cry

Not me but my mum is a transplant patient and as such has a suppressed immune system. She picks up every bug going and I'm sick of telling people not to go and visit her when they are ill, even if it is 'only a sniffle' they just don't get that a sniffle to them is a big thing to my almost 75 year old immunosuppressed mother. Shes only just getting over a bout of gastroenteritis she picked up in November. It's no joke.

Both DH and I would probably not survive if we actually had to work outside the home. It’s not a short-term solution, but Is there any way you could switch careers?

@ChronicIlness me, it’s tough with back to back illnesses. My medication for autoimmune conditions suppresses my immune system.
I have children so like you can’t avoid germs and to top it off I’m a part time teacher. I’m currently off ill, and like you am off quite a bit, to the extent now where I’m really trying to find a work from home job but it’s difficult to find something with similar pay and working from home part time.
It’s so frustrating, but you’re not alone.