Excruciating bladder pain - help me find a job!

[diyisnotmyforte]

I have interstitial cystitis. Well, at least I think I do. I've tried nearly everything (cystoscopies, instillations, acupuncture, homeopathy, long term antibiotics, pelvic floor therapy, diet.. you name it!) but unfortunately I still suffer with extreme urethral and bladder pain which can flare for months and come out if the blue.

I have two young children and a husband who works in finance. He earns a decent salary but we live in central London and money is still tight.

I used to be a teacher... I can't do that job any more, mainly due to me needing flexibility ( close proximity to a loo/pain meds etc/ sitting in a comfy position in joggers etc) so I really need something 100% remote...it's a non negotiable. I have some admin skills but not a lot. I would be happy earning £1k a month or less but I couldn't really commit to more than 20 hrs a week ( have a one year old who will only be doing 8 hrs of nursery a week).

I'm extremely friendly, have a degree.. what could I do? I am also happy to do a short course(s) to boost my skill set. I'm not very good with numerical stuff I have to admit.

Can you help a girl out? Really struggling with my confidence etc since having this condition.

Thanks so much!

Gosh that sounds awful. What has your GP said? Do you receive any DLA?

What about online tutoring? You obviously have teaching skills, and you could arrange to work at set times. There are a vast number of children who need online tuition. Or you could write content for home tuition?

I was going to suggest online tutoring

@DidILeaveTheGasOn what DLA? Not sue I would be entitled to anything as my husband earns fairly well but we live in London and it disappears after bills 😢

Yes it's pretty awful. I have days where I am so depressed but I look at my two boys and could ever leave them.

Re. Online tutoring, I did think of this but the hours are usually after school time/weekends.. which wouldn't work. Unless anyone knows of any companies where the hrs are more suitable?

Do you have to live in central London? Would help a lot if you weren't in most expensive place, even zone 3 would take the pressure off the overheads.

@pinkdelight this is where we both grew up and our child is happily at school. It's where all our friends and support network is. My husband works in in the city and cycles to work. Getting the train would be another cost.

Can you teach other time zones online?

DLA/PIP is not means rested

DLA is for children

Its PIP in adults
I doubt very much she would qualify

You poor thing. What pain med are you on? Is it nerve pain? I have used Amitripyline and pregabalin in the past for a similar sounding type of pain.

@PoopingAllTheWay2 yes I don't think I'd qualify. I just had a look and it's all to do with how mobile you are etc. I am mobile and do my best to keep up with exercise/ walking but I'm in pain doing it. It's a never ending grinding pain but I don't know how I would show this?

@WeAreNumpties I think it's a nerve pain but I'm not sure. The doctors aren't that useful. I've seen quite a few specialists but haven't found a thing to help so far. I have tried pregablin, it didn't help. I haven't tried amitriptyline
.. I've heard good things so might ask for that next time. I'm also going to ask about pudental nerve blockers too.

@diyisnotmyforte I really hope Amitriptyline helps. For info, I was put on quite a high dose at first and it zombified me and made me feel awful. I eventually tried it again out of desperation a year or so later but on the lowest dose and it really helped. I increased the dose later on without any problems when I felt my body would cope.

As regards PIP, I would get help with filling in the forms - if you can afford it then pay someone, if not the CAB usually have experienced people who can help. The forms are designed to put people off but, at this time, you have a disability that profoundly affects your life. You need time to recuperate and get back on your feet. To give you hope, my symptoms eventually reduced hugely on their own. They can still come back (at a much lower level) if I’m ill or stressed but I am much better than I was. UnMumsnetty hugs to you, it’s very hard to deal with I know.

@diyisnotmyforte apparently, direct messaging is disabled (at least, it is for me) so will post this here https://www.fedup.com.au/factsheets/factsheets-by-symptom/womens-health-a-diet#UTI.

You may find information here that might help.

What subject did you teach?

There is a lot of demand for 11+ tutoring.

Lots of homeschooled kids in London too.

For GCSE also lots of demand for daytime qualified teachers doing tutoring. So many graduated who tutor but don't actually know the specs or in depth knowledge of the market scheme expectations,

*mark scheme expectations

I haven’t read all the replies but I’ve had IC since I was 14, I’m now 44. Over the years I’ve had daily long term antibiotics, Tramadol and all sorts. It’s now mostly well controlled through amitriptyline at night and Ovestin oestrogen cream used internally regularly. You need a better urologist. I do get PIP because I have lots of other autoimmune issues but it’s worth considering. The worst they can do is say no.

I really hope the ami helps. I'm feeling so low today. The constant bladder burning is really getting me down and I just feel at such a loss.

I will also look into PIP. I'm spending so much money on supplements, appointments etc, it's really hard.

I couldn't really commit to more than 20 hrs a week ( have a one year old who will only be doing 8 hrs of nursery a week).

If you worked 20 hours a week and 1 year old is only at nursery 8 hours a week do you have childcare for the remaining 12 hours?

Could you find something online for the evenings when your DH is home?

Have you ever had treatment at the LUTS clinic in London, they see nhs patients?

You apply for pip ( non means tested), be ruthless with it, obviously effecting you too much.
You will need medical evidence tho

I think PIP is definitely worth exploring. How you would show it would be via an interview and also doctors letters. You'd probably be turned down first time but then appeal and you might get it. If you need to be near a loo and struggling to sit, etc then that's mobility related? I think people can get PIP for mental health so it must be more than just mobility?????

Being disabled is hard, I have mid stage Parkinson’s at 63,:everyday stuff gets harder .
i feel for you

What are you qualified to teach? If it's something really useful like maths, English, sciences, languages, then you can set yourself up as an online tutor and for 20 hours a week you could hit the £1000 you need, possibly more if you're good and have in-demand subject knowledge. I'm a parent of teens and good tutors for GCSE are like gold dust!

I know it's not what you are asking but getting to the bottom of the health issue and being in less pain would be a much better solution all round. Keep pushing for a 2nd / 3rd opinion. Imagine if it was sorted and you were pain free!

Could you look at online teaching maths/English for adults, or teaching English as a foreign language?