I live with chronic pain and a hearing impairment AMA

[Deafdeafdeath]

I can’t imagine anyone cares, but if you’re interested batter in!

I'm sorry to have missed that your cancer was ovarian. I'm glad the treatment was successful but so very sorry for the after effects that you're living with now.

I hope your medical team are supportive. Chronic pain is so wearing.

that’s ok, I’m fine now 😊 I just wish people understood that cancer can be cut out and “cured” (not a word I like to use) but the after effects can be life changing. Not in a good way!

Have you got endo banana? I got to the point that I hoped I did because at least then I’d have concrete reason for being in so much pain. But I’m glad I don’t, it sounds horrific.

Have you got endo banana? I got to the point that I hoped I did because at least then I’d have concrete reason for being in so much pain. But I’m glad I don’t, it sounds horrific.

I'm so sorry that you don't have any answers, I can relate to the frustration of being a medical enigma. I long to be medically boring!

I don't have endo - my infertility issue is actually the direct opposite (with endometriosis the lining of the womb grows where it isn't supposed to - my womb lining issues are the fact that mine doesn't grow where it IS supposed to. The world expert in the role of womb lining in infertility and miscarriage said that I was one of the strangest cases he'd ever seen, and he'd never seen what happens in my uterus in humans before, only mice. It doesn't cause me any physical pain - just the emotional difficulty of not being able to have children because my uterus can't sustain a pregnancy). My pain is due to my spinal injury, and exacerbated in some instances by my hypermobility.

But your description of your pelvic pain sounded similar to the kind of pelvic pain that is often related to (often undiagnosed) endometriosis. My pelvic Physio treats a lot of women with pelvic floor dysfunction related to endo, it's sadly incredibly common, and woefully under diagnosed and treated.

Ah I see, that sounds complicated

I have my answers to be fair, I just don’t like them! It’s hard to explain to people that yes, the cancer is gone but the pain isn’t. I get it, but other people don’t seem to grasp how much damage surgery and chemo can do.

Sounds v traumatic.

How did you learn to lipread and adapt to the hearing problems?

I did a few (usele

Oops. Useless classes. But they were useless. After a while you do it automatically though. I didn’t realise until someone spoke to me with their hand over their mouth that I really relied on it.

Hearing loss took a bit of getting used to. I was pretty devestated at the time because I had these awful big hearing aids and no hair. It was particularly hard as I went back to teacher training 6 months after my final surgery which, in hindsight, was too soon. I couldn’t hear the kids. So I am not a teacher!

Did i make it clear the classes were useless 😂

Yes

Shame they didn't help. I am asking because I have hearing loss,too, although mine is severe in one ear and mild in the other.

I cannot hear people as well when they turn away so I wonder if lipread a bit. I can see people swearing at me from their cars when they have road rage, too. Apparently, I am a stupid bitch who can't park, should fuck off etc etc

Yeah it’s likely you do it subconsciously.

The class I went to was charging £160 but it was more of a coffee morning for older ladies who had been going for years. If you’re down south you’ll have more chance of getting a decent one.

The thing that gives me the rage is people asking if I’ve learned to sign. I haven’t.

Do you wear hearinh aids?

Not yet but I have an assessment coming up. It's likely I will, though.

Sorry for the hijack!

Not at all! I hope you see a big difference, I highly recommend pushing for 2,

Gosh are you me OP?? I have chronic pain and a hearing impairment too! How did you learn to lip read? I really struggle with communication especially in social situations with lots of background noise so would love to learn to lipread.

Honestly, I didn’t realise I could do it for so long. I “practise” watching YouTube clips with no sound - I can mainly figure out what the accent will be now but Scottish and Irish both look similar - and realised I could do it during the royal wedding (will and Kate) because I could tell everyone what was being said on the balcony.

Have you watched the silent child? The scene at the dinner table made me cry so much.

My hearing went 8 years ago, so over time you learn subconsciously.

Action on hearing loss have a list of classes - I found the one I went to more like a coffee club for older adults though. All the ladies had been going for 10 years or so 😂 not what I needed! They wanted me to pay £180 as they were claiming ILA funding at tr time but it was totally inappropriate.

I still struggle in social situations, I make sure I sit with my back to the wall to have as little background noise as possible. It’s challenging - lipreading only gets you so far!

I also have some great tech which routes my phone at work through my hearing aids and im getting more to help when out of the office. I recently got new NHS hearing aids and they are so good - bette than my private ones now.

Are they behind the ear or in the ear ones?

All sets I’ve had are bte as the in canal ones aren’t much good for my hearing loss. I’ve known quite a few people who’ve had in canal hearings aids and they’ve actually been more obvious than Btes. The nhs don’t give in ear ones - I think because there’s no clinical need, they’re used for cosmetics.