Quadriplegic & Paraplegic Spinal Cord Injuries: Wife? Mum? Carer? - Quadriplegic & Paraplegic Spinal Cord Injuries

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#1 User is offline   moonstar 

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Posted 31 January 2007 - 11:27 PM

I found this site yesterday and feel i at last belong somewhere.

I had been with my partner nearly seven years when he had an operation that went wrong and left him tetra at level c4/c5 complete. I have three teenage children from my first marriage and three under five with my husband (we married last year while he was on home leave from rehab).

I cant accept what has happened still at the moment, my hubby lived for his motorbike when ab, we both think if he had been injured on his bike it would have been easier to deal with.

I love my husband very much but feel our experience has broken our relationship beyond repair, i cant talk to him about this because he is very weak and sick all the time, he spent three months in hospital and six months in rehab, he has been home nine months now but is still very ill, he is not vented anymore but has got major breathing problems,he needs 24 hour care which is largely my responsibility.

I feel more like his mum or nurse than wife, i spend only three hours a night sleeping and that is broken,either by the younger children or my hubby. And not helped by the fact i have been sleeping on a reclinr chair since he came home.I am always tired and dont have enough hours in a day for all i need to do.

I have gone from being a happy, bubbly fun person to a nag who is always moaning and unhappy, not the sort of person i want to be, how do i turn things around? I need to accept and move on so i can rebuild my marriage, any tips much appreciated.

If you have got to the end of this thankyou so much, i have got so much to say and no-one to talk to sorry, all our friends have slowly deserted us, has anyone else had that happen?

My hubbys family dont want to know and mine live over 100 miles away, i am all alone as far as support goes, i have never felt so lonely or trapped, there is so much more i need to get out of my system but it has taken me 4 hours to write this around caring so i look forward hopefully hearing fom some of you.

Thankyou

x Moonstar
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#2 User is offline   juls 

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Post icon  Posted 01 February 2007 - 03:23 AM

Hi Moonstar,

Although I can not answer your questions, I didn't want to just read this and not say hello.
You really have come to a wonderful, supportive, caring place with lot's of other people finding themselves in the same situation as you.
Stay on this site and get to know everyone, We'll always be here for you and you'll never be alone anymore...no matter what time of the day or night it is, someone is always around.

Love juliexxx
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#3 User is offline   Mary 

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Posted 01 February 2007 - 06:45 AM

Hello Moonstar....So sorry to hear abt your unhappiness but as Juls said, you have come to the right place. Here you'll get answers to your questions but above all that, pple who understand exactly what you are going thru. Dont worry, vent all you like here and get everything off your chest, its the beginning of your healing session and though i cant really tell you how to go abt your situation i can assure you, after today u'll be a whole different person. Feel free to ask anything and everything, there is always someone. Welcome moonstar :unsure:
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#4 *Hope*

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Posted 01 February 2007 - 06:56 AM

Hi Moonstar,
I wish so much that I had answers and words of wisdom for you but I do not. I can only tell you that the pain, anger, frustration, unhappiness, sadness, irritableness, feeling of helplessness ... (I could go on) are all very real, very normal and in my opinion almost necessary emotions and feelings while travelling this very difficult road. I have experienced them all and still do on an almost regular basis. However, what I have very recently found out is that when these emotions and feelings get unbearable ... this is the time to put everything on the table. NO MATTER HOW SCARED OR GUILTY YOU MAY FEEL DOING THIS. Let's face it. We as women are programed to lookafter everyone before ourselves. We make sure the kids are taken care of, our husbands are taken care of our job is taken care of, heck we even make sure society around us is taken care of by pretending we are handeling things well and coping with the major change in our life, just to make others feel comfortable when they ask "how are things" (sorry, major run on sentence) So when we start asking "What about me?" We feel guilty. Something inside of us tells us "its not about you... don't be so selfish" Doesn't really make things better does it. But the truth is... it is about you and your happiness and your sanity. How can we as wives and mothers do our jobs if we find it hard just to get out of bed every day. Or in your case a reclining chair. So where do you go from here...... I don't have the answer for that but I do know that nothing can be solved or made better unless it is brought out in the open. Yes this is one of the hardest things to do. Just last week was when it happened for me and my husband. For three nights until 2 am (started right after our children were put to bed at 8pm) we cried, yelled, talked, and cried some more until there was nothing left unsaid. It was shocking to me to see how little my husband understood what I was going through emotionally. It was a huge eye opener for both of us. As a result we have started to focus on a couple of issues at a time and try to figure out a way to cope or move past them to hopefully a much better and happier place for all. We know that this is going to be a long process and that new issues will certainly emerge from time to time but I can't begin to tell you how great it feels to have everything out in the open.

It appears that your husbands SPI and my husbands SPI occured close to the same time period. (1 1/2 years ago) This is a very tough time period to be going through for you. The realization of what your life will be like for the rest of your life is not what you had dreamed or wanted. At some point... and it may be sooner than you realize, you will ask yourself "can I do this and do I want to do this for the rest of my life" Only you will be able to answer that. I can only suggest that before you make a decision on such a huge question...... table everything with your husband and maybe even some extended family. You absolutely should not be having to deal with this alone. there is help out there to lighten your load and your husbands family should most definitely be helping you out more. that is what family is for.

You are an amazing woman and in time you will find the right path for yourself.... which ever it may be.

Many blessings to you and your family.

Hope
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#5 User is offline   Lucydog 

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Posted 01 February 2007 - 10:32 AM

Where are you living exactly?

cheers
L
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#6 User is offline   miss piggy 

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Posted 01 February 2007 - 11:25 AM

Hi moonstar
Welcome just sending you a :unsure: to cheer you up
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#7 User is offline   moonstar 

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Posted 01 February 2007 - 11:30 AM

THANKYOU SO MUCH FOR YOUR KND WORDS, BROOUGHT A FEW TEARS, IM NOT USED TO PEOPLE NOTICING ME LET ALONE BEING SO KIND, AND FOR LUCYDOG I LIVE IN WEST SUSSEX, ENGLAND, moonstar x
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#8 User is offline   bigsmiles 

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Posted 01 February 2007 - 11:41 AM

Hi moonstar and welcome, you know you can't carry on the way you are doing as you are going to make yourself ill and then what use will you be to anyone then! There are lots of people out there that can help you, you just need to be put in the right direction thats all. We are all here to listen as others have said and give advise if we can.
Nobody can make you feel inferior without your consent....Eleanor Roosevelt.
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#9 User is offline   miss piggy 

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Posted 01 February 2007 - 12:00 PM

moonstar
we live in woking surrey :) not to far from you .Try and keep your chin up :drunk:
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#10 User is offline   Lucydog 

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Posted 01 February 2007 - 12:46 PM

Moonstar

Im really saddened by your story, unfortunatly it is not uncommon to find it hard to access help. However there is help available but you need to start being very assertive. i.e. he who shouts loudest, gets!!!.

Have you applied to adult social services at West Sussex council for an assesment? If not, do it today, now.
Adult social care, west sussex

You may also be able to get help through child services as your partner is a disabled parent. Again contact the council and find out. Its worth it and you need it. Dont be put off if you dont succeed at first. You should be eligable for a direct payment, so you can organise your own care package if you want to.

Next try contacting the SIA, spinal injuries association, they are a goldmine of info and should be able to point you in the right direction.
SIA

your council also has a useful list of organisations in your area, pick up the phone and call them now ok?
Organisations list

Dont take no for an answer!!

You need to get your life back, you need a rest and your partner probably needs to see someone else as well.
Once you have got this sorted then you can start to look at your long term relationship.
Contact me if you want to chat further ok?
take care
L
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#11 User is offline   moonstar 

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Posted 02 February 2007 - 01:10 AM

HI EVERYONE, AFTER READING YOUR REPLIES I HAD A BETTER DAY THAN I HAVEHAD FOR A VERY LONG TIME,THANKYOU SO MUCH, IT SEEMED TO RUB OFF ON EVERYONE ELSE AS WELL, WOW, WE FOUND OUT TODAY MY HUBBY HAS A URINE INFECTION SO HOPEFULLY HE SHOULD START FEELING A BIT BETTER SOON TOO, I WOULD LIKE TO TELL YOU A BIT MORE ABOUT HIS INJURIES, HE HAS NO FEELING OR MOVEMENT BELOW ARMPIT LEVEL, HE CAN MOVE HIS LEFT ARM UP AND DOWN BUT NOT WRIST OR HAND, IT IS POSSIBLE HE MAY HAVE HAD A STROKE ON THAT SIDE, HE CAN MOVE HIS RIGHT ARM UP AND DOWN AND HAS HYPER EXTENSION IN HIS WRIST BUT NO HAND MOVEMENT, DURING HIS LAST OP THE SURGEON SEVERED THE MAIN ARTERY TO HIS BRAIN AND HE LOST 4 LITRES OF BLOOD,AS A RESULT OF THIS HE HAS ALSO GOT SOME BRAIN DAMAGE, HIS VISION AND MEMORY HAVE BEEN AFFECTED. IT IS SO HARD TO SEE HIM SUFFER EVERY DAY, IN SOME WAYS HE IS THE SAME PERSON, HE HAS STILL GOT A WICKED SENSE OF HUMOUR ON MOST DAYS, ON BAD DAYS HE IS LIKE A STRANGER, SINCE HIS INJURY I HAVE FELT LIKE I AM GRIEVING FOR THE PERSON I WANTED TO SPEND THE REST OF MY LIFE WITH AT THE SAME TIME AS BUILDING A RELATIONSHIP WITH THIS NEW PERSON, IT IS SO HARD, WHEN THE DAY ARRIVES THAT I CAN LET GO OF THE PAST OUR LIFE, I HOPE WILL CHANGE FOR THE BETTER. I COULD GO ON AND ON BUT I THINK I HAVE SAID ENOUGH FOR NOW, GETTING OVER TIRED. AS ALWAYS x moonstar x
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#12 User is offline   miss piggy 

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Posted 02 February 2007 - 11:37 AM

Hi moonstar
I am soooo glad you have had a better day :drive: .Hopefully you will get stronger and stronger each day .I hope your hubby's water infection clear's up fast ,then hopefully he will feel stronger too.When my brother-in-law had his accident someone said you have to grieve for one person and start to love the new person .We all may not have the answer but we are all here to listen to each other :mfrlol:
take care x

This post has been edited by miss piggy: 02 February 2007 - 11:38 AM

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#13 User is offline   moonstar 

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Posted 03 February 2007 - 01:29 PM

HI EVERYONE, THANKYOU FOR ALL YOUR ADVICE, IT HAS BEEN A GREAT HELP, I HAVE GOT ONE GREAT FRIEND WHO HAS BEEN WITH ME ALL THE WAY THROUGH THE HARD TIMES, SHE IS NOW GOING TO BE GETTING ILF MONEY SO SHE CAN BE HERE MORE, THAT WILL BE A GREAT HELP TO ME, I HAVE ALSO SPOKEN TO MY SOCIAL WORKER ABOUT THE OTHER STUFF AND SHE IS LOOKING INTO LOTS OF THINGS FOR ME, I FEEL LIKE A HUGE WEIGHT HAS BEEN LIFTED, SUCH A RELIEF, I WISH I HAD FOUND THIS FORUM MONTHS AGO. AND FOR HOPE, I GOT BRAVE AFTER READING YOUR ADVICE AND BOUGHT A FEW THINGS OUT INTO THE OPEN, WE BOTH FEEL SO MUCH BETTER, I CANT SAY IT WAS FUN BUT THERE WAS A LOT THAT SHOULD HAVE BEEN SAID BEFORE NOW, THERE ARE STIIL A LOT OF ISSUES BUT WE ARE ALREADY STARTING TO LAUGH AGAIN, I CANT THANK YOU ENOUGH FOR YOUR ADVICE, I THINK WE CAN REPAIR WHAT IS BROKEN IN TIME INSTEAD OF FIGHTING A LOOSING BATTLE, I HOPE WE CAN SUPPORT EACHOTHER. :help: AND FOR MISS PIGGY, YOU SOUND GREAT FUN, I THINK WE MAY HAVE SOMEINTERESTING AND FUN CHATS, BRING OUT THE ME I SEEM TO HAVE LOST OVER TIME :help: BE BACK SOON x moonstarx
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#14 User is offline   Jilly 

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Posted 03 February 2007 - 11:24 PM

Hi Moonstar,

Miss Piggy IS lots of fun. I totally recommend her company! :blushing02:

Oh...and welcome by the way! :blushing02:
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#15 User is offline   moonstar 

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Posted 05 February 2007 - 12:03 AM

HI EVERYONE, DO ANY OF YOU USE THE CHATROOMS? I HAVE BEEN IN THERE A FEW TIMES BUT ARE ALWAYS EMPTY. I WOULD LIKE TO CHAT BUT I CANT BE IN THERE AT A SET TIME AS I NEVER KNOW WHAT SORT OF NIGHT ALAN WILL HAVE AND MY DAYS ARE TOO BUSY. IM VERY NERVOUS ABOUT GOING IN THERE BECAUSE MY TYPING IS STILL VERY SLOW (ONLY JUST GOT PC) THAT WAS RATHER POINTLESS, SORRY, I WILL KEEP TRYING xmoonstarx
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#16 User is offline   moonstar 

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Posted 05 February 2007 - 03:38 AM

CANT SLEEP. FOR THE LAST FEW NIGHTS I HAVE BEEN HAVING REALLY UPSETTING DREAMS, THEY ARE OF ME AND MY HUSBAND BEFORE HE WAS INJURED, I CAN ACTUALLY FEEL HIM CUDDLING ME AND SEE HIM WALKING ANDDOING ALL THE THINGS HE USED TO BE ABLE TO DO, IT IS SO NICE,THEN I JOLT AWAKE AND REALITY SMACKS ME IN THE FACE AGAIN, I AM FINDING IT VERY DISTRESSING, I MISS HIM SO MUCH, HE HASNT BEEN ABLE TO HUG ME SINCE IT HAPPENED, BECAUSE HE HAS HAD SO MANY SET BACKS HE IS STILL VERY WEAK. IS THIS NORMAL OR AM I GOING MAD?? HE SAID HE ALSO DREAMS ABOUT WHEN HE COULD WALK. xmoonstarx
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#17 *Hope*

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Posted 05 February 2007 - 04:52 AM

View Postmoonstar, on Feb 4 2007, 06:38 PM, said:

CANT SLEEP. FOR THE LAST FEW NIGHTS I HAVE BEEN HAVING REALLY UPSETTING DREAMS, THEY ARE OF ME AND MY HUSBAND BEFORE HE WAS INJURED, I CAN ACTUALLY FEEL HIM CUDDLING ME AND SEE HIM WALKING ANDDOING ALL THE THINGS HE USED TO BE ABLE TO DO, IT IS SO NICE,THEN I JOLT AWAKE AND REALITY SMACKS ME IN THE FACE AGAIN, I AM FINDING IT VERY DISTRESSING, I MISS HIM SO MUCH, HE HASNT BEEN ABLE TO HUG ME SINCE IT HAPPENED, BECAUSE HE HAS HAD SO MANY SET BACKS HE IS STILL VERY WEAK. IS THIS NORMAL OR AM I GOING MAD?? HE SAID HE ALSO DREAMS ABOUT WHEN HE COULD WALK. xmoonstarx

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#18 *Hope*

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Posted 05 February 2007 - 05:11 AM

Moonstar,

Hi again. I was so happy to read that you have been talking to your husband. I know it is not a fix but it is certainly a step in the right direction. It sounds like you and I are traveling the same road almost. I recently had a dream of my husband and I running on the beach in Mexico. We were just there for a vacation in January and though I did plenty of running it was alone. but in the past it used to be my husband and I. I know that when we wake it is as you say a "slap of reality in the face" but I will admit that I welcome those dreams. It helps me remember the good times and who my husband once was. I cherish those memories and pray that they never fade. I will admit that in a year and a half I have yet to have a dream with my husband in a wheelchair. I am sure the day will come but for now my mind has 15years of memories of a strong, active, able bodied husband. Maybe it will take another 15years before I start dreaming with the reality of life. But then again I have had dreams where I can fly. Let's face it... our minds work in very mysterious ways. I say enjoy the dreams, remember the past and work on making new dreams. I also think sometimes that it is our way of holding on to the hope that someday our husbands may walk and live life again like they once did. I certainly don't see these dreams as a concern at all. Just again part of the process and very natural. So sweet dreams!!!

As for the chat room.......... I have tried going on there several times as well but no one is ever there. I live in Canada and on the pacific time Zone. I try to log in on the evenings after dinner. Maybe I will catch you there. Take care.

Hope (JLH)
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#19 User is offline   juls 

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Posted 05 February 2007 - 05:12 AM

Hi moonstar,

No, you're not going mad! There is a thread on here about dreams and wether people walk or are in thier chairs, that is sort of similar to what you're saying..you should have a read of it.

In regards to the chatroom, when you're on, you should scroll right down to the bottom of the home page and it will tell you who else is on at the same time. You could always send that person a pm, asking if they want to chat??

julsxx
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#20 User is offline   miss piggy 

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Posted 05 February 2007 - 11:39 AM

Hi moonstar
Just catching up ,i have been off for the weekend .So glad you are feeling better .Laughing is the best medication in the world :yahoo: . Friends are so special and i am so glad you have a friend that is there for you :) I know it's hard but try and take as much help as you can ,then it gives you time not to lose yourself.Please don't forget about you .Anyway enough of that .You say you are slow at typing .I am awful and my spelling is BAD tee hee .Oh how i had wished i was a good girl at school :) I was the class clown .One thing i did learn is always smile :) even if you feel sad it does make you feel better Take care xx

Arr thank you jilly :th_driving1:
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#21 User is offline   Mary 

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Posted 06 February 2007 - 06:48 AM

View Postmoonstar, on Feb 5 2007, 02:38 AM, said:

I MISS HIM SO MUCH, HE HASNT BEEN ABLE TO HUG ME SINCE IT HAPPENED, BECAUSE HE HAS HAD SO MANY SET BACKS HE IS STILL VERY WEAK. IS THIS NORMAL OR AM I GOING MAD?? HE SAID HE ALSO DREAMS ABOUT WHEN HE COULD WALK. xmoonstarx



Juls is right, you r perfectly normal,dont stress yourself out......just reach out to your husband even when you jolt after those dreams and give him that hug....touch is also of utmost importance...
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#22 User is offline   miss piggy 

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Posted 09 February 2007 - 11:38 AM

Hi moonstar
Just wondering how things are going for you ? :(
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#23 User is offline   moonstar 

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Posted 09 February 2007 - 06:09 PM

HI MISS PIGGY, WE R STILL PLODDING ALONG, HUBBY IS OVER HIS WATER INFECTION, HE FINISHED HIS ANTIBIOTICS YESTERDAY, THEN TODAY WE HAD TO CALL THE DOCTOR BECAUSE HIS TEMP WENT UP AND HE WAS HAVING TROUBLE BREATHING, HE HAS GOT A CHEST INFECTION, MORE ANTIBIOTICS. :licklips: HE HAS BEEN ASLEEP ALL DAY, NOT GOOD. SOME GOOD NEWS NOW, I HAVE FINALLY GOT A BED, WE HAD A CHANGE ROUND AND FOUND A SPACE( WE HAVE RECENTLY MOVED) I HAD FORGOTTEN WHAT SLEEPING IN A BED WAS LIKE, ONLY THING IS I DONT WANT TO GET UP NOW LOL, xmoonstarx
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#24 User is offline   miss piggy 

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Posted 12 February 2007 - 11:09 AM

Hi moonstar
Yipee a new bed ,just hope you get chance to sleep in it ha .Wishing your hubby a speedy recovery .Really hope things are starting to look up for you all . :specool:
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