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Original poster

Struggling with a rare disease

7 replies

RyanGoslingsTan · 28/08/2023 13:31

Hi

Not really sure why I'm starting this thread to be honest, just really struggling at the moment. I have been diagnosed with a very rare, serious disease with no cure. I'm only 37 and in agony all day every day
I'm on over 60 tablets a day plus double doses of morphine, I'm bed bound most of the time.

Just wanted a hand hold really, sorry

OP posts:
UnaOfStormhold · 28/08/2023 13:32

That sounds truly awful, nothing to offer except a hand to hold. Do you have good support in real life?

Original poster
RyanGoslingsTan · 28/08/2023 13:34

UnaOfStormhold · 28/08/2023 13:32

That sounds truly awful, nothing to offer except a hand to hold. Do you have good support in real life?

Thank you so much. Yes my husband is my full time carer. I'm just struggling as my mum and dad are both very unwell. My dad is dying, couple of months at most, really not sure about my mum, although she has the hospital this week and my auntie died yesterday morning.my mental health is suffering badly with it all

OP posts:
Araminta34 · 28/08/2023 13:41

That sounds utterly horrendous for you. I'm sorry you're going through all this. Your own health and that of your parents must be really depressing.
I'm not a doctor, but I do remember reading that taking multiple tablets can cause a lot of side effects as they interact with each other, and sixty tablets a day is a lot.
Is there no way that you can reduce the number?

Original poster
RyanGoslingsTan · 28/08/2023 13:46

Araminta34 · 28/08/2023 13:41

That sounds utterly horrendous for you. I'm sorry you're going through all this. Your own health and that of your parents must be really depressing.
I'm not a doctor, but I do remember reading that taking multiple tablets can cause a lot of side effects as they interact with each other, and sixty tablets a day is a lot.
Is there no way that you can reduce the number?

Thank you. They have been reduced a lot believe it or not and what I am taking right now are the bare minimum to keep me alive. But I do know that tablets can have awful side effects etc too, it's a never ending circle

OP posts:
RedDoughnut · 28/08/2023 14:13

Do you want to tell us what it is OP on the off chance someone has experience of it?
Are there support groups for your condition? Maybe Facebook groups?

Coping with your parents is another pressure. I hope you get some support.

Mumsnet is a good place to pour your feelings out

Original poster
RyanGoslingsTan · 28/08/2023 14:37

RedDoughnut · 28/08/2023 14:13

Do you want to tell us what it is OP on the off chance someone has experience of it?
Are there support groups for your condition? Maybe Facebook groups?

Coping with your parents is another pressure. I hope you get some support.

Mumsnet is a good place to pour your feelings out

Thank you. It's called ATTR Amyloidosis. I also have other conditions like lupus, psoriatic arthritis, heart problems,bowel problems etc that this disease has caused. I have found a couple of face book groups which are pretty good. Thank you for taking the time to read and respond

OP posts:
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