The "let's talk" thread

Well the shitty call has come in from my sister.

Oncology have signed my Dad off to palliative care provided by the local (and excellent) hospice. He’s gone from 18 to around 8 stone and it feels as though my world’s falling in.

I’m due over for a week at the start of Feb for the West Ham game but am now likely over before.

What the fuck can one say?
 
Well the shitty call has come in from my sister.

Oncology have signed my Dad off to palliative care provided by the local (and excellent) hospice. He’s gone from 18 to around 8 stone and it feels as though my world’s falling in.

I’m due over for a week at the start of Feb for the West Ham game but am now likely over before.

What the fuck can one say?
I'm sorry honey,i've read how much you adore him x
 
I've had a MRI today as i've been struggling with the effects of a brain injury i have been living with for a long time,there are changes on it which might explain my balance leaving the building this last couple of years,some degeneration or perhaps a small bleed in that area it's very complicated thing to live with,it changes you and not for the better,need to get the proper report done and measurements etc then talk again,support group to try and get a grip on the behavioural aspect which has slipped recently,it never rains but it pours

The human body is a fantastic thing until it goes wrong
 
I've had a MRI today as i've been struggling with the effects of a brain injury i have been living with for a long time,there are changes on it which might explain my balance leaving the building this last couple of years,some degeneration or perhaps a small bleed in that area it's very complicated thing to live with,it changes you and not for the better,need to get the proper report done and measurements etc then talk again,support group to try and get a grip on the behavioural aspect which has slipped recently,it never rains but it pours

The human body is a fantastic thing until it goes wrong


So sorry to hear that Karen , I know how worrying the “not knowing” can be. Hope the MRI result is more positive than you think. Take care , hope City produce a wonderful performance for you on Sunday and next Wednesday to keep you distracted.
CTID
 
So sorry to hear that Karen , I know how worrying the “not knowing” can be. Hope the MRI result is more positive than you think. Take care , hope City produce a wonderful performance for you on Sunday and next Wednesday to keep you distracted.
CTID
Thanks lovely,i'm alright,it won't be anything i can change,i only have a certain amount of control with it at the best of times so no point fretting too much,i decided recently not to hide it anymore which is quite liberating in itself
 
The human body is a fantastic thing until it goes wrong

indeed. I also today had a visit to the hospital.

I’ve suffered for over 2 years with an intestine/belly issue. I’ve had every scan/test available (including investigative op) -all organs working - and nothing, nada, zip, no reason that Consultant or GP can find. It causes ups and downs in my ability to work/think or labour. I can go from having a great session at the gym to feeling ‘am I going to make it up the stairs’ in a few days.

It’s been a grind and taken it’s toll on me mentally, along with a whole host of other things in the family, including the complete PTSD collapse of Mrs JASR... not helped by my inability due to the above (or below).

The above followed on from another mystery illness, which was finally diagnosed and hence treatable after 9months, as visual vertigo - basically my eyesight took over my balance duties after a viral infection in my ears, and wouldn’t let go of it’s assumed duties when my ears came back on duty - I could walk down the street and passing a lamppost, it felt like the lamppost was lurching into me. Had a brain scan and various tests, all good - there was a brain there.

but today, I had a repeat test of something I’d had done a year ago, and this time, finally, for the 1st time, a test was ‘positive’ - ie they knew something about what was wrong with me! It was a joyous moment to be diagnosed with something..heh. Bizarre, but we’ve both,Mrs JASR and I, been celebrating, as something is finally ‘known’... just need to sort out the ‘how to fix’ now!

the health worker thought I was clearly ‘special’, and a mystery... which was the same with the visual vertigo diagnosis, as well as what Mrs JASR thinks of me....in that particular way...heh

so, for the 1st time in awhile, I can see, not the ‘end’, but at least ‘the start of the end’. Which, considering where I’ve been mentally in the past few years is a strange, but good, feeling.

I can’t praise the NHS and all its professional medical, admin and menial staff enough. I’ve paid taxes for 30 years, and it’s been worth every penny that has gone to those people to look after me and the rest of the population.
I’ve been to more than my fair share of A&E depts (none stupidly self inflicted), - Mrs JASR works in them, and again I’ve ...not enjoyed my moments there... but fully appreciated what the UK has.

... having finally arrived in the mental health side of the NHS (long delays)...I can see it’s beyond breaking point and is just doing similar to A&E.. fire fighting and hoping to get through to the end of the shift... :(

apologies for the longggg post, far longer than I thought I’d post when I started replying to Karen... but as the thread says...it’s good to talk.

So, finally, I’d just like to say I’ll hopefully get to a BM meetup, having been kyboshed with being too ill on 2 possibly 3 occasions now, over the past 2 years. It’s a small thing on a bucket list. But it’s the small positives that get you through and onwards.
 
indeed. I also today had a visit to the hospital.

I’ve suffered for over 2 years with an intestine/belly issue. I’ve had every scan/test available (including investigative op) -all organs working - and nothing, nada, zip, no reason that Consultant or GP can find. It causes ups and downs in my ability to work/think or labour. I can go from having a great session at the gym to feeling ‘am I going to make it up the stairs’ in a few days.

It’s been a grind and taken it’s toll on me mentally, along with a whole host of other things in the family, including the complete PTSD collapse of Mrs JASR... not helped by my inability due to the above (or below).

The above followed on from another mystery illness, which was finally diagnosed and hence treatable after 9months, as visual vertigo - basically my eyesight took over my balance duties after a viral infection in my ears, and wouldn’t let go of it’s assumed duties when my ears came back on duty - I could walk down the street and passing a lamppost, it felt like the lamppost was lurching into me. Had a brain scan and various tests, all good - there was a brain there.

but today, I had a repeat test of something I’d had done a year ago, and this time, finally, for the 1st time, a test was ‘positive’ - ie they knew something about what was wrong with me! It was a joyous moment to be diagnosed with something..heh. Bizarre, but we’ve both,Mrs JASR and I, been celebrating, as something is finally ‘known’... just need to sort out the ‘how to fix’ now!

the health worker thought I was clearly ‘special’, and a mystery... which was the same with the visual vertigo diagnosis, as well as what Mrs JASR thinks of me....in that particular way...heh

so, for the 1st time in awhile, I can see, not the ‘end’, but at least ‘the start of the end’. Which, considering where I’ve been mentally in the past few years is a strange, but good, feeling.

I can’t praise the NHS and all its professional medical, admin and menial staff enough. I’ve paid taxes for 30 years, and it’s been worth every penny that has gone to those people to look after me and the rest of the population.
I’ve been to more than my fair share of A&E depts (none stupidly self inflicted), - Mrs JASR works in them, and again I’ve ...not enjoyed my moments there... but fully appreciated what the UK has.

... having finally arrived in the mental health side of the NHS (long delays)...I can see it’s beyond breaking point and is just doing similar to A&E.. fire fighting and hoping to get through to the end of the shift... :(

apologies for the longggg post, far longer than I thought I’d post when I started replying to Karen... but as the thread says...it’s good to talk.

So, finally, I’d just like to say I’ll hopefully get to a BM meetup, having been kyboshed with being too ill on 2 possibly 3 occasions now, over the past 2 years. It’s a small thing on a bucket list. But it’s the small positives that get you through and onwards.
Great post lovely

I know why you are happy to get some kind of diagnosis after all this time,without it you can't get control,even if it can't be fixed having a name that you can research and try and help yourself can give you a huge lift,it's the not knowing that is really difficult in my experience

Getting to a meet up was on my list as well,it's taken a lot out of me but it was worth every single minute,i'm planning on getting up again to see dave off,let's target that together,we can push each other to make it happen
 
Got the complete MRI results today,pretty much what he said the other day about a small bleed and degeneration where the original injury was
Basically thats why i keep failing over,i'm stuck with it now which is a pain,all the breaking bones from failing are happening at home and he said i have to concentrate as much as i do outdoors,not thinking i don't have to put in the effort to be careful
I fainted and banged my head on an indoor wall right before the falls started,it hurt and i had a big bump and a headache but thought it was ok,i didn't make the link when tne falls started
My consultant tore me off a strip for not going to hospital,he said what did we tell you the golden rule is,i said dunno,it's any new head injury has to be checked out,i said i've forgotton that as well as the other million things,along with just living with the original brain injury
Tells me to use a stick or crutch unless i have someone who can hold onto me
I used to do everything for myselt,stand on a chair or walking on the kitchen work tops,now i have to ask someone to change a fucking lightbulb,so frustrating
I wasn't expecting to be worse again,it's a whole new level of shite and not helping my mental health one little bit
 
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Got the complete MRI results today,pretty much what he said the other day about a small bleed and degeneration where the original injury was
Basically thats why i keep failing over,i'm stuck with it now which is a pain,all the breaking bones from failing are happening at home and he said i have to concentrate as much as i do outdoors,not thinking i don't have to put in the effort to be careful
I fainted and banged my head on an indoor wall right before the falls started,it hurt and i had a big bump and a headache but thought it was ok,i didn't make the link when tne falls started
My consultant tore me off a strip for not going to hospital,he said what did we tell you the golden rule is,i said dunno,it's any new head injury has to be checked out,i said i've forgotton that as well as the other million things,along with just living with the original brain injury
Tells me to use a stick or crutch unless i have someone who can hold onto me
I used to do everything for myselt,stand on a chair or walking on the kitchen work tops,now i have to ask someone to change a fucking lightbulb,so frustrating
I wasn't expecting to be worse again,it's a whole new level of shite and not helping my mental health one little bit
Sorry to hear this Kaz, I remembered my mother went through similar some years ago.
She did stand on a stepladder to reach something and fell off, breaking her hip.
We told her never to climb on anything but she did anyway.
Anyway a long stint in hospital and hip replacement followed.
So just you do as your told, and enjoy life, you can talk to us mooners, or moaners, anytime...lol
 
Sorry to hear this Kaz, I remembered my mother went through similar some years ago.
She did stand on a stepladder to reach something and fell off, breaking her hip.
We told her never to climb on anything but she did anyway.
Anyway a long stint in hospital and hip replacement followed.
So just you do as your told, and enjoy life, you can talk to us mooners, or moaners, anytime...lol
Me do what i'm told? that's a stretch lol,on the plus side i do have a handsome handy man to perve over :)
 

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