10 replies to this topic

[pinkcloud]

Thought: I think this warning needs to be put on the pre-operative form we sign of possible complications.

The operation you are about to recieve has the large almost guaranteed possibility of emotional exhaustion.

Although we are consultants who work in one of the most complicated forms of medicine, we have no idea how to advise you on how to deal with all the sufferings you will occur afterwards.

We may as well say 'you will now be doing the job of a consultant Neurosurgeon, the hours of work will be 24/7, you will feel all the pain that your patient feels, you wont get paid for doing so you will have to give up your previous job.

There is a large possibility your life wont ever be the same and we dont mean that in 'that this is going to be in a positive way'.

There is a large possibility that some people in your life may leave you. Also, that other people may begin to look at you as if they will catch some horrid disease', that you have no brain, will ask you imapproriate questions like 'can you still have sex? want to try?' when before they would not even dare to look at you or ask you what time it is'.

Most everything you feel thats going on with you body will be desecribed by good kind consultants as 'I'm sorry we just dont know', by other doctors who dont have such confidence will say 'Yes, it must be because your feeling depressed, its the nervous system, here take these valium and go away and be seen and not heard.

Thank goodness for apparelyzed hey guys and thanks for all the help you give us - newbies to sci - your not mad, your not imagaging your body changes, we just have to get by the best we can and help each other out.

I am now smiling and I got me a little life built up again, theres hope you can too

[Simba]

So true Pinkcould. There are no definites in medicine - it is really not as advance as people are led to believe it is.

At the end of the day we all have to cope the best we can. I am not SCI but help support my husband as much as I can and deal with my own medical conditions in the same way.

Having hope and a good attitude helps considerably getting us both through each day at a time. That and a lot of hard work to keep going and try to improve our situation.

Other people's mentally is just Assumptions are dangerous - they can do a lot of damage.

Keep building your life up as much as possible - especially all the important things support from friends.

Thanks also to all on apparelyzed it makes the journey all that much easier for us all and we have a place to meet and share experiences and offer support to one another.

[lavenderthistle]

I like that I'm sure a bit of coffee came out my nose laughing. My best comment so far has been..."get a hair cut and make over, you'll feel like a new person!" ( that's sort of the problem right now) Thanks for the laughs....

[pinkcloud]

Thanks Simba

I never thought I would say this in me early days, yet I dont think me having sci is the worst thng that could have happened to me in me life. Who would I rather have sci? me or me sons? me - anyday.

Simba, you like me sons do have sci - a different verson of our of sci, you loved ones of us sci's I call 'Special Caring Individuals'. Your loved one's sci affects your life, your health, your world just as much as it affects ours.

PLUS you have your own personal individual lives to lead alongside your lives with us and this includes your own health issues - and again at least most of us know we have sci and can come to apparalyzed.

Them who have other illness/disabiltes that may not be 'socially' viewed as so serious as sci have even less empathy shown towards them than us with sci do. I for exanple say 'I have the same condition as christopher reeves/superman (God bless this wonderful gentleman), just mines not as high a critical level' is enough for some people to think 'ohhhh no'. Who can a person with migraines, diabetes, leg ulcers, kidney stones refer too? The lady or man up the road to our home maybe? Not quite the same effect.

So in me book, us with sci's in our own body - or those wth sci in their hearts (carers/relatives/friends) are all in the same gang. But thats just me take on things and am sure lots on here agree - and if they dont,well thats just as cool with me too

[pinkcloud]

ohhh ms 'lavender i see no thistles on you anywhere'

I can imagine the scenerio.this story is not real, and does not really relate to Ms Lavenders situation or life or neighbours in her street as I dont even live in the same country...it is however how I imagine some people to think, I mean 'make over'....'Miss lavender i see no thistles' you made me laugh out loud with this one (i do apologise to anyone who has ever said this to someone in real life, its not aimed to be nasty, just a way to learn how to laugh off comments that sometimes makes us feel aggrevated. I do understand it is hard sometimes to find the right things to say).[/b]



They will be saying you have resorted to being a drug addict I bet, they probably just heard the word 'coffee out of nose' and say

our neighbour number 1 says to her visiting friend.....
'that poor young lady resorting to snortng coffee granules to cope - coffee was banned around 100 BC as it was classed as a dangerous drug...that didnt happen for nothing you know....i think shes dealng too, i saw her friend bring in 5 full coffee jars wth the shopping the other day...and she does have other cripples visit her...and what other reason would cripples need to leave their homes for? -except to have their hair-dyed and a make-over. l mean if being 'disabled was normal' they would be in all the tv programmes and magazines. No they have got to try and hide their real identity from the world, I mean the shame of it - being 'disabled'. i told her so too the other day, i dont think shes took this on board though -no the poor love, shes gave up.Mind you, I didnt think she would, she reads books, listens to music, goes outside even when its raining, is nice to strangers...shes not one of us beautiful people. I feel so sorry for her, shes one of those with beauty on the inside and beauty on the outside people. I mean really!!!! To be beautiful on the inside means you need a brain - and a heart - I mean, who wants these inside of their body? They are so ugly -the brains all grey and bobbley. The heart..its got tubes attached to it you know..not like them ones on valantines days cards.... uuuurrrhhhh. I'll keep being 'an airhead and heartless anyday'.

The friend says
Oh hunnnnyyyy, I feel for you, It cant be easy you know,having to actually see one of these cripples around. Its normal for them to pretend they are in pain to get drugs, morphine and other stuff you know. We ALL know people in pain never smile - and shes always smiling -and her doctor knows it too I bet - thats why shes resulted to snorting coffee. I know all about this - I saw it on that documentry - you know the one, its on the internet channel 'shallow peoples tv' the one thats advertised 'if you spend your time reading just celebrity magazines than your'll love this'... that sold it to me. Its a private station with no approval from the government to air in this country but hey...whats silly internet laws for anyway? Only to protect us from terrorists and that Bin Ladens been caught so laws dont need to exist anymore 'airhead magazine' monthly says

Lavinder and me drinking coffee at her home think

Edited by pinkcloud, 05 May 2011 - 07:10 PM.

[lavenderthistle]

All stoned on coffee and dying our hair! Mine's purple! really I'd be pleased to be your coffee dealer, but they really do think I'm drunk with all the wobbling...my poor poor neighbors

[pinkcloud]

lavenderthistle, on 05 May 2011 - 08:21 PM, said:

All stoned on coffee and dying our hair! Mine's purple! really I'd be pleased to be your coffee dealer, but they really do think I'm drunk with all the wobbling...my poor poor neighbors

[wheeliebear75]

a different verson of our of sci, you loved ones of us sci's I call 'Special Caring Individuals'.

I like that one! Think I'll start calling mom & B/F that!

Edited by wheeliebear75, 07 May 2011 - 09:47 AM.

[pinkcloud]

Thanks wheeliebear

its so hard to let loved ones know we appreciate them so much and that sci affects them too :-)

[madhouse73]

dam did someone say they are a coffee dealer .I need some real coffee not instant .Goes to look through bag for bribary options erm rasian or chocolate( pikcs the dust of first)

[pinkcloud]

madhouse73, on 11 May 2011 - 08:52 AM, said:

dam did someone say they are a coffee dealer .I need some real coffee not instant .Goes to look through bag for bribary options erm rasian or chocolate( pikcs the dust of first)

:-D :-D :-D Madhouse

Little bit of info why i detest some nurses, the great ones are fantastic - the bad ones well......
Here I am two days post-op with catheter in. Its over-flowing. I start to pour with blood - not period as i didnt get them for a while after - no this was just 'normal' bleeding that happens after surgery to the spine....ok then. Now I had not been washed, I had food all down me top as t-spine means i cant bend to eat, poop on me from enema as I cant poop meself as muscles all gone....and i say 10 times in half an hour 'please nurse could you change me catheter, its blocked and for some reason i'm dripping with sweat (that your hormones- the early menopause !!!!) What? It was actually an AD attack from spinal shock I later discovered.

Being nice was getting me nowhere so i ended up keeping me finger on the buzzer and shouting 'would you change me ###### catheter please'. Along came a nurse smugley and said ohh i'll change it for you alright - as she yanked it out. Lucky I had no feeling. Me AD attack got worse and I said, you are never coming near me again - I'll get toilet. So me new mate with a brain injury wheeled me when i needed to go. As i in turn had helped her emotionally. So out it came - neuropathic bladder. I got urine infections due to not draining but I would never be at mercy at them again. After all they treated 90 year old brain tumour ladies worse than me so i didnt take offence. I reported this 'nurse' lucky for me, a very well-to-do lady saw it all and also experienced this nurse being just as vile to her - leaving her light on - ignoring her buzzer, so this patient just gave up trying. For a progressive brain tumour patient - lights are torture- and she reported her too.

This is not even near the real bad treatment I recieved of some....and witnessed others suffer too.Thats un-printable. This was the neurosciences ward - my bay was full of really bad brain cancer cases, and had to be near the nurses station. And thats how we were treated - goodness knows how the 'less critical' cases were treated.

Now them good nurses were like they were heaven sent or something. The bad nurses were horrid to them good nurses. I made sure all good staff were mentioned in my letter of complaint against the few nurses who caused so no much misery. Apologies were made but not genuine ones - they were not sorry to me - they were sorry they had been caught out. Yes nursing is understaffed, high pressured etc... sos most jobs - if they cant handle people and stress - well go and pack carboard boxes I say to them.Cardboadboxes cant be damaged.

Now about that coffee lol
Its ok, I got mine from hospital nurses station, while they were all on their most un-favourite nursing round called 'really, this job is sooo below me - handing out carboard bed pans for patients who have been begging for them for the past 8 hours and still they are not out of this ward and gone to urology ward for retention of urine. Another night of them blinking moaning.'

I meself cant wee and can hold it in for at least 24 hours before I die from an AD attack - so I got on me zimmer frame, dropped the coffe granules into plastic bags (glass is too heavy) and sneaked it back. Dont coffee taste so much nicer when its been taken from the bad nurses lol. I call it compensation anyway for all the terrible treatment we got

Edited by pinkcloud, 11 May 2011 - 11:47 PM.