Now is the time to be really serious about getting to India for the Stell Cell Treatment, but things are really tough for so many all over the world with the way things are financially. I feel embarrassed about asking for help to get there. It's not like me to have to ask for help. A totally new thing that being in a wheelchair has been thrown in my face. ASKING FOR HELP. I see so many living it harder than I do too. Lot's of fund-raising going on in the newspaper each week, so many others needing help. What shall I do to raise these funds for me? I can busk with my ukulele, but that's scary as I'm not as confident as I once was, but not out of the question. I'd feel better if I could play well ha ha! I have asked all my friends in my email contacts to donate and I have already had some great response and help. Especially family and friends in the UK. My brother is also helping in the USA and we all know how bad it is over there. He is sourcing the equipment that I need to get my body fitter so that the physio will be easier. I've been along time sitting. I have been knitting and sewing and trying to sell the things that I make. I wish I could sell my villa but then I wouldn't have anywhere to live. (It's not easy getting wheelchair accessible places to rent). Anyway, every moment of thought sends me new lessons and then more new thoughts. It so amazing that a book that I read years ago which became my Best Book to read would be such a help now at this time. It's called The Way of the Peaceful Warrior. By Dan Milman. It's been made into a movie and is now out on DVD. It has so much more in the book that is good for the soul. One statement in the book that taught me heaps is that there are no ordinary moments, and no moment is, ordinary. Last Saturday night my mum and I went to a fund-raising Trivia Night for a young man who I have known for all of his 19 years. Dale Johnston. He needs the funds to get to the 2012 London Para-olympics. I know he will get there as his whole town just about turned up for it. Nearly 300 people and a heap of fun and support. Not one ordinary moment went by, it was so special. We have to support the young ones with a dream. All the people that I have met since my accident. The other paras and quads, the nurses, doctors, physios, O/T's, social workers and home help. So many working to help give people a better, more comfortable and meaningful new life. I am so in awe of some people's devotion and dedication. Now I imagine what some get when they help someone like me get out of their wheelchair and walk for the first time after being told that it would never happen. So fulfilling and amazing. I have seen again Vivienne and Louis Rowe with Dr. Geeta Shroff, who does the treatment in India, on the 9 am TV show on Channel 10 talking about the Stem Cell treatment and how good it is. You can imagine how I feel when I want to go have that treatment too. I think about it everyday, I think about being able to stand on the beach and leave footprints. All that is stopping me is the funds, it sounds like it is overly expensive, ( it is dearer now with the dollar the way it is) US 40,000.00 but the cost is for 2 months stay in a 5 star hospital for you and your carer who goes and stays with you. All meals and extensive physio and the treatment.
It would be more expensive here in Australia and they keep saying it won't be long until it is here but we still don't have the support from the government here yet. I don't want to wait. My legs don't want to wait. I want to try NOW! So please donate, my bank details are on the left. More information about the treatment is on amanda boxtels 'awakenings' site and Louis Rowes blogsite, get there through his web site. They can be sourced by Googling Dr. Geeta Shroff. THANK-YOU FOR YOUR TIME, love Jeanie
Friday, October 31, 2008
Tuesday, October 21, 2008
'Have I told you lately that I love You'
Out of the rehab section of the hospital. Just in time to have Christmas at home. A bit too soon really but they closed that section for the Christmas break and I would have had to stay in the medical section so I opted to be at home. I had made some great friends there and the staff were fabulously helpful. (except for one) WE won't go there. Tina and Sue came up from Melbourne with baby Lola. It was going to be a great family get together at Park Beach reserve. My friend Joanne came up from Sydney too and stayed with me in the spare room.
Alison and Toby were moving in as well. Mum and dad were in their new place and my new life had begun. Donna and Paul and the boys came up from Wangarratta. What more could I have.....all my girls together and all the grandchildren....mum and dad. That's what life's about really isn't it. Family and friends. All together and having a great time.
This is the time to thank everyone for all their support from day one until now. Four years have gone by so quickly and so many changes. My girls have helped me through some pretty bad early times when I needed a lot more help than I do now. Taking me out, doing my shopping, cooking me meals, doing housework and keeping me company and giving it to me when I have been feeling so helpless and hopeless. All my parenting coming back at me. My reason for living making it all worthwhile. I thank you all... mum and dad too and my sisters, brothers, girlfriends and boyfriends who turned up unexpected to give me massages and bringing lunch over. Helping me when I needed it most and leaving me with it when it was most important that they did. It was also good that the alterations hadn't all been done as it was a good distraction from some of the yucky things that happened daily.
All has settled down in the last couple of years and I have my 'Nippi" for independence. I can be on my own and I look after myself quite well. Donna and Paul and the boys have moved up from Wangarratta and the only ones I miss are Tina and Sue with Lola and now little Zaidee. I would love to be able to go visit them but I need a wheelchair accessible bathroom wherever I stay and I need to take my commode with me too.There is no place near where they live and I need someone to go with me if I go away from Coffs Harbour to handle all my equipment. Finances makes that an easier proposition. So I make the most of being able to talk to them 4 or 5 times a week on the free time on my mobile phone....
As of today my girls and my mum, (my dad passed away last year) keep in touch with me daily. My sisters, brothers and friends too. I'm very lucky to be loved so much. Thanks heaps...
Alison and Toby were moving in as well. Mum and dad were in their new place and my new life had begun. Donna and Paul and the boys came up from Wangarratta. What more could I have.....all my girls together and all the grandchildren....mum and dad. That's what life's about really isn't it. Family and friends. All together and having a great time.
This is the time to thank everyone for all their support from day one until now. Four years have gone by so quickly and so many changes. My girls have helped me through some pretty bad early times when I needed a lot more help than I do now. Taking me out, doing my shopping, cooking me meals, doing housework and keeping me company and giving it to me when I have been feeling so helpless and hopeless. All my parenting coming back at me. My reason for living making it all worthwhile. I thank you all... mum and dad too and my sisters, brothers, girlfriends and boyfriends who turned up unexpected to give me massages and bringing lunch over. Helping me when I needed it most and leaving me with it when it was most important that they did. It was also good that the alterations hadn't all been done as it was a good distraction from some of the yucky things that happened daily.
All has settled down in the last couple of years and I have my 'Nippi" for independence. I can be on my own and I look after myself quite well. Donna and Paul and the boys have moved up from Wangarratta and the only ones I miss are Tina and Sue with Lola and now little Zaidee. I would love to be able to go visit them but I need a wheelchair accessible bathroom wherever I stay and I need to take my commode with me too.There is no place near where they live and I need someone to go with me if I go away from Coffs Harbour to handle all my equipment. Finances makes that an easier proposition. So I make the most of being able to talk to them 4 or 5 times a week on the free time on my mobile phone....
As of today my girls and my mum, (my dad passed away last year) keep in touch with me daily. My sisters, brothers and friends too. I'm very lucky to be loved so much. Thanks heaps...
Saturday, September 20, 2008
"Home Sweet Home" Not quite!
Getting to the airport is still a blur, I know that Suzie had come down to Moorong and collected all the things that I had accumulated in the 5 months I was there. Plus the equipment that I had to take as well, e.g. my commode, gifts, all my clothes, the TV that Ricks parents had bought me and my doona. I couldn't have luggage to deal with, I was on my own. The taxi seemed to take ages but soon I was there. I was told I would be loaded first and then I would be last off. My wheelchair had to go in the hold so I was lifted by baggage men into a small seat and loaded onto the plane in a lift that looked like a horse float. I managed to remember to take my cushion from the wheelchair to put under me on the plane as I was scared of getting pressure sores from the seat. The cushion made me high in the seat and it was hard to keep my balance as my feet didn't touch the ground. I knew it was only an hour or so and that it should go quickly. I will see the kids soon, nothing else matters....I was excited to see everyone.
The plane lands... I am away from Moorong.....away from Sydney....I'm moving forward now on my way to my new life. The maxi taxi had been ordered and I was to go straight to the hospital to stay there in the rehab section.....All the passengers went and I was the last to get off. My wheelchair was unloaded and I was lifted into it. I hated all that handling. I felt so helpless and heavy and my legs spasmed so much. I was hoping that I wouldn't have an accident because you never knew when your body wanted to get rid of wastes. It just happened if you didn't get rid of enough in the morning . (sorry if it's too much info but no-one tells you all this, it happens to you) Then there was your bladder bag strapped to your leg filling up if you drank too much. I was disabled physically and emotionally I was a mess on the inside, choking back the tears, and smiling on the outside. I'm OK, really I am.
Wow! there's the kids! Jenni and Jamie, James, Bill, Pippy, Suzie, Caitin and Rhianna and the boys Alex and Nic. I had bought the cool wheels with lights in for my wheelchair so the kids would see that I had a groovy wheelchair. The kids came in the taxi with me. It was great to see them. It was good that they wanted to ride with me and be with me. It was so hard and different to cuddle them with no balance and the wheelchair in the way. I could see the questions in their eyes..... I'm so far down now too. They are all taller than me!
We got to the hospital and I was put into a room with 3 older ladies with a toilet on one side of the room and the shower on the other. This was not good already. I could see confrontation looming...
I got settled in and I thought that the hospital, being new, would have all the facilities that one would need. Not so.... Suzie bought in some of the things that I had in Moorong and I made do.... this is where the learning to take control of your care came in. I needed to direct staff as to what was required and what I was used to....some listened , some didn't. Most were really great though, I must say. It was a shock to find though that most of the staff weren't that knowledgeable with spinal chord injuries.
Everything was different to what I had been used to in Moorong. Even my medications. They didn't have the same laxatives so I had to use what they offered. I will manage, because I am home. I'm with my family again, everything will be fine now...They will help me to get used to all this and I will help them to get used to me. That will be my new focus... Goodnight, sleep tight.....Oh my, I'm in a hospital situation and there are nurses coming and going all night and patients waking up and noises like never before. I had gotten used to quiet and sleeping through the night with nurses tiptoeing in and out..... quietly. That's OK I'm home with my family and kids, I have been through the mill, this is nothing....all a new adventure...a new life lesson. It's still early days yet and 'they' might help me to be able to do more...have better equipment so I might be able to stand..who knows? ...we will see hey!
Well....GOOD MORNING TO YOU TOO!..... I couldn't believe it. Every move I made was watched by the other 3 patients. God love em! they were intrigued by this lady in a wheelchair who had fallen off a ladder. The news was out. What is she doing now!
She is going into the toilet, let's all watch her shall we. Oh she is taking far too long what are we going to do.... "Are you finished yet Jeanie?"... Now she is is going into the shower....I had to wheel over to the other side of the room on my commode after having to try and cover myself. The room had nurses, patients, cleaners and whoever and I wanted to cry...no privacy for me now. "How long are you going to be in the shower Jeanie?". My life was being watched by all and anyone, way before I got used to it all myself. There wasn't anyone to just focus on helping me, this was rehab. But not like I was used to.
Now it was time for me to take a stand for me. I might not be able to do some things but being intimidated and embarrassed I could do something about. I had to stand up for myself and take some control of my life. I asked for a room with a combined toilet and shower by myself or with someone that would be OK with me being in there for over an hour. They put me in a room for 2 with the combined toilet/shower. Thank-you soooo much. Things are looking up. They are going to help me because it's all falling into place......Thank God
The plane lands... I am away from Moorong.....away from Sydney....I'm moving forward now on my way to my new life. The maxi taxi had been ordered and I was to go straight to the hospital to stay there in the rehab section.....All the passengers went and I was the last to get off. My wheelchair was unloaded and I was lifted into it. I hated all that handling. I felt so helpless and heavy and my legs spasmed so much. I was hoping that I wouldn't have an accident because you never knew when your body wanted to get rid of wastes. It just happened if you didn't get rid of enough in the morning . (sorry if it's too much info but no-one tells you all this, it happens to you) Then there was your bladder bag strapped to your leg filling up if you drank too much. I was disabled physically and emotionally I was a mess on the inside, choking back the tears, and smiling on the outside. I'm OK, really I am.
Wow! there's the kids! Jenni and Jamie, James, Bill, Pippy, Suzie, Caitin and Rhianna and the boys Alex and Nic. I had bought the cool wheels with lights in for my wheelchair so the kids would see that I had a groovy wheelchair. The kids came in the taxi with me. It was great to see them. It was good that they wanted to ride with me and be with me. It was so hard and different to cuddle them with no balance and the wheelchair in the way. I could see the questions in their eyes..... I'm so far down now too. They are all taller than me!
We got to the hospital and I was put into a room with 3 older ladies with a toilet on one side of the room and the shower on the other. This was not good already. I could see confrontation looming...
I got settled in and I thought that the hospital, being new, would have all the facilities that one would need. Not so.... Suzie bought in some of the things that I had in Moorong and I made do.... this is where the learning to take control of your care came in. I needed to direct staff as to what was required and what I was used to....some listened , some didn't. Most were really great though, I must say. It was a shock to find though that most of the staff weren't that knowledgeable with spinal chord injuries.
Everything was different to what I had been used to in Moorong. Even my medications. They didn't have the same laxatives so I had to use what they offered. I will manage, because I am home. I'm with my family again, everything will be fine now...They will help me to get used to all this and I will help them to get used to me. That will be my new focus... Goodnight, sleep tight.....Oh my, I'm in a hospital situation and there are nurses coming and going all night and patients waking up and noises like never before. I had gotten used to quiet and sleeping through the night with nurses tiptoeing in and out..... quietly. That's OK I'm home with my family and kids, I have been through the mill, this is nothing....all a new adventure...a new life lesson. It's still early days yet and 'they' might help me to be able to do more...have better equipment so I might be able to stand..who knows? ...we will see hey!
Well....GOOD MORNING TO YOU TOO!..... I couldn't believe it. Every move I made was watched by the other 3 patients. God love em! they were intrigued by this lady in a wheelchair who had fallen off a ladder. The news was out. What is she doing now!
She is going into the toilet, let's all watch her shall we. Oh she is taking far too long what are we going to do.... "Are you finished yet Jeanie?"... Now she is is going into the shower....I had to wheel over to the other side of the room on my commode after having to try and cover myself. The room had nurses, patients, cleaners and whoever and I wanted to cry...no privacy for me now. "How long are you going to be in the shower Jeanie?". My life was being watched by all and anyone, way before I got used to it all myself. There wasn't anyone to just focus on helping me, this was rehab. But not like I was used to.
Now it was time for me to take a stand for me. I might not be able to do some things but being intimidated and embarrassed I could do something about. I had to stand up for myself and take some control of my life. I asked for a room with a combined toilet and shower by myself or with someone that would be OK with me being in there for over an hour. They put me in a room for 2 with the combined toilet/shower. Thank-you soooo much. Things are looking up. They are going to help me because it's all falling into place......Thank God
Saturday, August 16, 2008
"There's no place like home"- Dorothy
Now learning to drive a car was another huge thing for me. After the initial medical and physical checks to see if I was capable then, a driving test exam. A shock, as I had a Gold license with no convictions so why do I have to go through all this again, be on a learners permit???? .... So I had to learn to get out of the wheelchair into the car, getting my legs in and my butt in the right position, adjust my pants so that I didn't get pressure sores from the seams. (The staff seemed to be on you all day about it).. Fold up the chair after taking all the bits off I had to and then hook it onto the hoist and the hoist did the rest and it was folded onto the roof. "Hand Controls" that's a beauty! One hand on the wheel and the other does the stop and go and indicators..... It felt like it was never ending all this new equipment to learn to use what I had always done so well before...more tests of capability.
Well I was enjoying the driving lessons and then the teachers went on holidays for a few weeks and I couldn't get another lesson for weeks and I was going home soon to Coffs. No worries, I will continue up there. I will have to buy another car anyway as my car, a Daihatsu Mira, is a manual and I will need an automatic to attach the hand controls. I will miss that car as I had not long bought it for work. The girls had been driving it to come down to see me as it was really good on petrol. In the meantime I will check out the "Nippi's (Google it to see what they are) that I had heard about from a friend who knew someone who had one. I get the guy who has them in Sydney to bring one to the rehab centre to give a demo. Great, amazing! That's it! No worries, I will get one of those. I had not long had my motorcycle license when I had my accident...at least I still had that. Just have to get the money, $12,000 hm mm. I will have to sell my motorbike and my car that might be enough for a second hand one maybe......
Back into the swing of things as it was getting close to going home. I just had all the renovations of my home to go through with the O/T's. Get my bed/mattress ordered and commode chair for back in Coffs Harbour. Seating clinics and wheelchair fitting and ordering. Learn about all the leg bags, catheters and medications etc. that I will have to order and I still had to get my bowels working properly as I was still having trouble with that routine not working as best as they could because of the food they served there. The lack of leg and hip exercise and the constipating medications. (I was still having the occasional accident). I hated the bathroom routine. There was only 2 toilets and 2 showers and 4 women. Another lady in a single room. So it was first in best dressed and it took hours. Not to mention so little heating and it was so bloody cold. The water was luke warm so we didn't burn ourselves and we wouldn't know...... Then to wheel on your commode past the men's bathroom and then the dining room to get back to your own room. So confronting and embarrassing. But we will pretend we don't care won't we?
In the meantime more gym work which was good, but I never got to stand upright and I only got to have a swim once.I was still seeing the therapist once a week and social worker to try and work out how I will manage when I got home and was by myself. A whole new situation for me, my children, my parents and sister in Coffs.
In hindsight I think that I was still avoiding being passionate about functioning better in the wheelchair because I still didn't accept that this was permanent. I was treating my stay at rehab as a hospital, (because of all the hospital equipment,doctors and nurses), so I was going to get better...fixed... normal again. Other people there were walking again and getting movement. It was just a matter of time that I would. Why weren't the physios helping me to stand and get on the parallel bars?
I was getting visitors every week, which was great. People that I hadn't seen in years. It was really great to think that all these friends really cared about me and were so encouraging. One friend, (my ex husband's ex and their daughter Roxi) came and spent a few days taking me out, and dying my hair and generally pampering me. It was truly helpful, Sue did some chakra balancing on me and it was great to have that spiritual connection again. Another friend also came and we were talking about how my legs felt. It was so important as they had felt as though they were still in the same position as they were when I fell and had not straightened out, and were not in the sitting down position but twisted on the side. Kerry had me visualise them on the ground and the agonising pain that had been in them since the accident, went. Such a huge relief, but then I got a huge pain in my heart, it felt like I was going to have a heart attack and I got such a huge lump in my throat, I could hardly breath, but I knew that my heart really was broken. Rick had broken my heart by giving up on me and was not supporting me in any way and I was grieving my broken back, broken legs, broken job, broken children, broken family and friends. I had broken my parents lives......I broke my relationship and my future...I was so scared. I tried not to think about it, tried to avoid it all by pretending that I was ok with it all.
It was too huge to deal with. What have I done??? .... I knew the grief was so big that if I let it out in this place they would commit me. I couldn't in my room because these girls had to deal with their accidents too. They too were fragile and super sensitive. I didn't want to dump it on them either. If I did, I would make it real and then I'd have to accept it. I didn't know how to do that. I didn't know how to be a paraplegic. We were all putting on a brave face.... I could tell the therapist about how I felt but I could also tell that she wouldn't deal with me letting out all the anger and frustration that I felt, so I held it all in. I told the girls not to come down anymore as I would be home soon and they needed to get back to their lives. I will do some workshops when I got home.........
I had made some great friendships with some of the other clients and it became a social place too with all of their families being so supportive.We would all have dinner together and have our evening medications and laxatives together. We complained about the shitty food and talked about our bladder and bowels. I told jokes and tried to be funny and keep everyone laughing. I wanted to take it all away from them too as they were such lovely people. They shouldn't be going through all this either. Especially the really young ones
They appeared to be adjusting to their lives so I figured I would try too. I started having computer lessons (to pick up my skills) to help get back to work when I got home. Now I wonder if I would be able to get my job back??
Rick would ring me nearly every evening to tell me about his day, his life and his new love. Everyday I wanted him not to ring because we talked about how the accident had changed everything. He talked about how hard it was for him. I missed the life that I had there and I wanted to get back and take my life out of his house and move on. To me it wasn't finished until I had all of me and my things out of his house, but I had to go back there and get it all and see that frigging ladder....the ladder that I dreamt about night after night.
Mum and dad came and stayed with me for a night in the family unit they had there to get used to me and my condition.That was very confronting as I had to tell them what to do to assist me and not let them do too much for me. How do you tell your mum not to mother you??.....They didn't look me in theface..they didn't want to see their girl in a wheelchair.
They had moved into a place elsewhere and were waiting on a housing commission place as dad was over 80 now. All a bit hard to hear as I was usually there to help them move and now it was up to my sister Linda to do on her own. (They weren't supposed to move again as I had bought my villa for them to be settled in for the rest of their lives) Another challenge for us all. Them to move again and me to feel useless as I couldn't help or make it easier. I felt so guilty. All this was my fault.
Decisions to make about the bathroom renovations in my home. I needed to be home to help somehow. All will be great when I get home. I had to be transferred to the Coffs Hospital rehab first as the renovations weren't finished and I needed to stay there until they were. Only a few weeks there they said......The social worker books the flight from Sydney to Coffs. Thank God for the social workers
Seeing all the grandchildren and being home in Coffs will make things so much easier because "there's no place like home"
Well I was enjoying the driving lessons and then the teachers went on holidays for a few weeks and I couldn't get another lesson for weeks and I was going home soon to Coffs. No worries, I will continue up there. I will have to buy another car anyway as my car, a Daihatsu Mira, is a manual and I will need an automatic to attach the hand controls. I will miss that car as I had not long bought it for work. The girls had been driving it to come down to see me as it was really good on petrol. In the meantime I will check out the "Nippi's (Google it to see what they are) that I had heard about from a friend who knew someone who had one. I get the guy who has them in Sydney to bring one to the rehab centre to give a demo. Great, amazing! That's it! No worries, I will get one of those. I had not long had my motorcycle license when I had my accident...at least I still had that. Just have to get the money, $12,000 hm mm. I will have to sell my motorbike and my car that might be enough for a second hand one maybe......
Back into the swing of things as it was getting close to going home. I just had all the renovations of my home to go through with the O/T's. Get my bed/mattress ordered and commode chair for back in Coffs Harbour. Seating clinics and wheelchair fitting and ordering. Learn about all the leg bags, catheters and medications etc. that I will have to order and I still had to get my bowels working properly as I was still having trouble with that routine not working as best as they could because of the food they served there. The lack of leg and hip exercise and the constipating medications. (I was still having the occasional accident). I hated the bathroom routine. There was only 2 toilets and 2 showers and 4 women. Another lady in a single room. So it was first in best dressed and it took hours. Not to mention so little heating and it was so bloody cold. The water was luke warm so we didn't burn ourselves and we wouldn't know...... Then to wheel on your commode past the men's bathroom and then the dining room to get back to your own room. So confronting and embarrassing. But we will pretend we don't care won't we?
In the meantime more gym work which was good, but I never got to stand upright and I only got to have a swim once.I was still seeing the therapist once a week and social worker to try and work out how I will manage when I got home and was by myself. A whole new situation for me, my children, my parents and sister in Coffs.
In hindsight I think that I was still avoiding being passionate about functioning better in the wheelchair because I still didn't accept that this was permanent. I was treating my stay at rehab as a hospital, (because of all the hospital equipment,doctors and nurses), so I was going to get better...fixed... normal again. Other people there were walking again and getting movement. It was just a matter of time that I would. Why weren't the physios helping me to stand and get on the parallel bars?
I was getting visitors every week, which was great. People that I hadn't seen in years. It was really great to think that all these friends really cared about me and were so encouraging. One friend, (my ex husband's ex and their daughter Roxi) came and spent a few days taking me out, and dying my hair and generally pampering me. It was truly helpful, Sue did some chakra balancing on me and it was great to have that spiritual connection again. Another friend also came and we were talking about how my legs felt. It was so important as they had felt as though they were still in the same position as they were when I fell and had not straightened out, and were not in the sitting down position but twisted on the side. Kerry had me visualise them on the ground and the agonising pain that had been in them since the accident, went. Such a huge relief, but then I got a huge pain in my heart, it felt like I was going to have a heart attack and I got such a huge lump in my throat, I could hardly breath, but I knew that my heart really was broken. Rick had broken my heart by giving up on me and was not supporting me in any way and I was grieving my broken back, broken legs, broken job, broken children, broken family and friends. I had broken my parents lives......I broke my relationship and my future...I was so scared. I tried not to think about it, tried to avoid it all by pretending that I was ok with it all.
It was too huge to deal with. What have I done??? .... I knew the grief was so big that if I let it out in this place they would commit me. I couldn't in my room because these girls had to deal with their accidents too. They too were fragile and super sensitive. I didn't want to dump it on them either. If I did, I would make it real and then I'd have to accept it. I didn't know how to do that. I didn't know how to be a paraplegic. We were all putting on a brave face.... I could tell the therapist about how I felt but I could also tell that she wouldn't deal with me letting out all the anger and frustration that I felt, so I held it all in. I told the girls not to come down anymore as I would be home soon and they needed to get back to their lives. I will do some workshops when I got home.........
I had made some great friendships with some of the other clients and it became a social place too with all of their families being so supportive.We would all have dinner together and have our evening medications and laxatives together. We complained about the shitty food and talked about our bladder and bowels. I told jokes and tried to be funny and keep everyone laughing. I wanted to take it all away from them too as they were such lovely people. They shouldn't be going through all this either. Especially the really young ones
They appeared to be adjusting to their lives so I figured I would try too. I started having computer lessons (to pick up my skills) to help get back to work when I got home. Now I wonder if I would be able to get my job back??
Rick would ring me nearly every evening to tell me about his day, his life and his new love. Everyday I wanted him not to ring because we talked about how the accident had changed everything. He talked about how hard it was for him. I missed the life that I had there and I wanted to get back and take my life out of his house and move on. To me it wasn't finished until I had all of me and my things out of his house, but I had to go back there and get it all and see that frigging ladder....the ladder that I dreamt about night after night.
Mum and dad came and stayed with me for a night in the family unit they had there to get used to me and my condition.That was very confronting as I had to tell them what to do to assist me and not let them do too much for me. How do you tell your mum not to mother you??.....They didn't look me in theface..they didn't want to see their girl in a wheelchair.
They had moved into a place elsewhere and were waiting on a housing commission place as dad was over 80 now. All a bit hard to hear as I was usually there to help them move and now it was up to my sister Linda to do on her own. (They weren't supposed to move again as I had bought my villa for them to be settled in for the rest of their lives) Another challenge for us all. Them to move again and me to feel useless as I couldn't help or make it easier. I felt so guilty. All this was my fault.
Decisions to make about the bathroom renovations in my home. I needed to be home to help somehow. All will be great when I get home. I had to be transferred to the Coffs Hospital rehab first as the renovations weren't finished and I needed to stay there until they were. Only a few weeks there they said......The social worker books the flight from Sydney to Coffs. Thank God for the social workers
Seeing all the grandchildren and being home in Coffs will make things so much easier because "there's no place like home"
Saturday, August 2, 2008
"who's gonna cook my dinner?'
I am taken to Moorong Rehab. in Ryde by Community transport Jenni comes with me..I am apprehensive as I am not sure what's it's going to be like but I was told that all would be good when I get there as it will be totally different than the hospital and I will learn heaps about being in a wheelchair and how to manage it and myself as I am now. I am taken into a ward with 2 other ladies, one young girl in a wheelchair, who was with her father, and the other, about my age, was in a bed. I was here to learn about my disability, but also get to adjust to being in a room with these two ladies and the place it's self.
We were the only women in the place. The rest were mostly young men,mainly quadriplegics. We all had to go to the gym everyday and the occupational therapist, social worker and psychologists to adjust to our condition and organise our lives and homes to go home too. Oh I needed to go home to my children so much. I missed them so much. I felt such a burden on them as they were leaving their homes and children to be with me. Alot of my friends and family came to visit. My mum and dad I hadn't seen since the accident. That was very hard for them to see me in a wheelchair. It was hard for me to see them seeing me. Rick came but he was angry that he couldn't come in until after 11 am. That was the time the staff finished helping all the patients with their bathroom needs.No-one was allowed in before then. It was hard to understand why he was there as he just wanted things to be the same as they were.He was angry at me all the time. He wanted to know why I couldn't live back with him and still look after him as I did before."Who's going to cook my dinner?" " You can still.......can't you? He wasn't seeing me with a condition that had restrictions physically, emotionally and sexually. He wanted me to sell my villa and fix his house up so that I could still live there. I told him I needed to be near town so that I had easy access to the doctors and facilities that I would need.He didn't want to fix his house when I lived there before my accident.He was happy the way it was. I told him that maybe he needed to find someone new who he could still go bike riding with. Someone that would cook his dinner,... etc.....Five weeks after my accident..he was taking out a girl he met on the net from Woopi...he rang me everyday to tell me about their dates. I wanted to stay friends as I still had strong feelings for him. My life had changed dramatically. His didn't have to. He didn't want to make adjustments to accommodate me, he wanted me to make adjustments to accommodate him. All my belongings were at his house, so there was still heaps to do when I got home to live independently, to start again. My parents lived in my villa and they had to move out while it was renovated to suit my condition. I thought it would help emotionally to just let go of him and let him move on. It did.. I didn't have to deal with his rejection of my condition his anger at my family for being angry at him...it was all too much for me....all this for falling off a bloody ladder.
I got to know the girls in the ward and they were nice and also we all had dinner together in the dining room so got to know all the guys as well. The food was a little better but not much. The girls took turns in coming down from Coffs to stay with me, so Suzie came next and then Alison. They would push me up to Ryde shopping mall and we would get some nice food and I bought clothes to wear as I needed different types of clothes and shoes now. My shoes had to be 2 sizes bigger because of the swelling and I couldn't wear underwear because of the seams. No back pockets in your pants because of pressure areas. Everyday I had to check my skin to make sure I wasn't getting pressure sores from my wheelchair cushion or the bed on my butt and feet. It was a whole new way of living with myself now. My legs had to be on pillows of a night and I had to connect myself to a night bag to drain my bladder. The staff would come in 2 or 3 times a night to empty it it of course waking you up. I learnt to shower myself and empty my urine bag. Learnt more about Spinal chord injuries by going to the lectures that they held there. I had to have wheelchair lessons so that I could manage once out there on my own. Totally frightening.... I wanted to go home to my children and grandchildren, they miss me too..... oh not yet! we have to make sure you can do everything first and you have all the right equipment....maybe learn to drive a car with hand controls......
We were the only women in the place. The rest were mostly young men,mainly quadriplegics. We all had to go to the gym everyday and the occupational therapist, social worker and psychologists to adjust to our condition and organise our lives and homes to go home too. Oh I needed to go home to my children so much. I missed them so much. I felt such a burden on them as they were leaving their homes and children to be with me. Alot of my friends and family came to visit. My mum and dad I hadn't seen since the accident. That was very hard for them to see me in a wheelchair. It was hard for me to see them seeing me. Rick came but he was angry that he couldn't come in until after 11 am. That was the time the staff finished helping all the patients with their bathroom needs.No-one was allowed in before then. It was hard to understand why he was there as he just wanted things to be the same as they were.He was angry at me all the time. He wanted to know why I couldn't live back with him and still look after him as I did before."Who's going to cook my dinner?" " You can still.......can't you? He wasn't seeing me with a condition that had restrictions physically, emotionally and sexually. He wanted me to sell my villa and fix his house up so that I could still live there. I told him I needed to be near town so that I had easy access to the doctors and facilities that I would need.He didn't want to fix his house when I lived there before my accident.He was happy the way it was. I told him that maybe he needed to find someone new who he could still go bike riding with. Someone that would cook his dinner,... etc.....Five weeks after my accident..he was taking out a girl he met on the net from Woopi...he rang me everyday to tell me about their dates. I wanted to stay friends as I still had strong feelings for him. My life had changed dramatically. His didn't have to. He didn't want to make adjustments to accommodate me, he wanted me to make adjustments to accommodate him. All my belongings were at his house, so there was still heaps to do when I got home to live independently, to start again. My parents lived in my villa and they had to move out while it was renovated to suit my condition. I thought it would help emotionally to just let go of him and let him move on. It did.. I didn't have to deal with his rejection of my condition his anger at my family for being angry at him...it was all too much for me....all this for falling off a bloody ladder.
I got to know the girls in the ward and they were nice and also we all had dinner together in the dining room so got to know all the guys as well. The food was a little better but not much. The girls took turns in coming down from Coffs to stay with me, so Suzie came next and then Alison. They would push me up to Ryde shopping mall and we would get some nice food and I bought clothes to wear as I needed different types of clothes and shoes now. My shoes had to be 2 sizes bigger because of the swelling and I couldn't wear underwear because of the seams. No back pockets in your pants because of pressure areas. Everyday I had to check my skin to make sure I wasn't getting pressure sores from my wheelchair cushion or the bed on my butt and feet. It was a whole new way of living with myself now. My legs had to be on pillows of a night and I had to connect myself to a night bag to drain my bladder. The staff would come in 2 or 3 times a night to empty it it of course waking you up. I learnt to shower myself and empty my urine bag. Learnt more about Spinal chord injuries by going to the lectures that they held there. I had to have wheelchair lessons so that I could manage once out there on my own. Totally frightening.... I wanted to go home to my children and grandchildren, they miss me too..... oh not yet! we have to make sure you can do everything first and you have all the right equipment....maybe learn to drive a car with hand controls......
Sunday, July 27, 2008
You Will Never Walk again
I need to know after all that did I go to the toilet?.....No, that's funny! I'm not busting anymore and I don't go for another 3 days and then, ( too much info hey!) Well after I do and it's an embarrassing experience (being in a ward with 3 guys) I don't go for another 6 days. I have an indwelling catheter and a bag. I have to have someone help me into a bathroom on a commode via a lifter (male wardsmen) and they have to shower me. This isn't right!! I only broke my back and they've fixed that now what's the deal? What do you mean I won't be able to use my bladder and bowels the same way ever again. What! on a bladder bag for the rest of my life!!! I have to retrain my bowels with what!! enemas, suppositories and gloves....holy holy this isn't right ....This is a nightmare, I'm overwhelmed by all the extra issues of the condition I find myself in. Too many.....toooo many, someone has to come in with something positive to hang onto about all this...
The 3rd day they get me into a wheelchair and I am to go to the Gym, for what! I don't get this, no-one from the hospital comes and speaks to me about what I have to do now.
I go with Jenni and they want to get me to transfer onto a plinth. How, I can't lift my leg over it's too heavy. I have no balance. I am petrified of falling out of the chair. I don't feel strong enough and yet I thought I was pretty fit.
Look, can I just put my legs in that machine so my legs don't forget how to walk.....if I do that everyday they will remember and just do it won't they?.. I have been up for a while and I'm tired I need a rest..back to bed...next day they want me up again.....Hold on... you get 4 days rest when you have a baby and I have just had major surgery and I have stitches in my back and on my hip where they did a bone graft.. not today..If I was ok to do all this gym stuff, why am I on heaps of pain killers still.... this is too real, like it's really happening and it'a not going away or getting better.
The days now run into each other.The food is terrible so I can't eat it. My brother Lee and his wife Lisa have come to see me. Lee looks so sad and I can tell he is not handling this at all, my other Paul rings from Texas USA. Damn what have I done!!! The phone rings all day and Jenni has to take the calls as I can't say it again "I fell off the ladder and broke my back"
My girls Donna, Suzie, Jenni, Tina, Alison and Billie-Jean come visit with some of their partners and my newest grandchild Lola around 5 weeks old.She is hard to hold as I have no balance. I'm a grandma, I'm supposed to be able to cuddle and play with my grandchildren. This is punishment. This isn't fair...., I had planned to do so many things with my 12 grandchildren. All that is going to change.
My Sydney friends drop in too. I'm moved in and out of the men's ward when no-one has an infection. I can't believe still that this is real. The surgeon has come in to tell me I will never walk again, again, like he has to make the point. But I can feel things, I tried to move my toes and my right toe moved. Alison was there, she saw it. But no, even though I tell the nurses I am told again. You will never walk again.
Nightmares every night, I am dreaming about the fall over and over. The crash of the ladder.....oh why couldn't I have held on and not fallen back onto it. Why didn't I check it better....Why was I in such a hurry....oh yes I needed to go to the toilet..why didn't I just hold on until Rick was finfished in there...all day and night I'm thinking.. thinking.
Every night staff come in to turn me over to stop pressure sores. Every 2 hours... I'm tired it's too much to come to terms with.I can't turn myself or move my legs as they are too heavy... I'm sorry... sorry... my girls have all been crying .. so have some of my friends. I get lot's of phone calls from friends and family far and wide.They send flowers and cards and I am in the hospital bed in the ward so I feel that I am just sick and that I am going to get better and my legs will start to work. I have to go to see the social worker..she's nice..she'll fix things she is sorting things out. I have to fill out forms to get on a disibility pension......Oh my God... I've lost my job...I loved that job...I will have to live somewhere else...can't go back to Ricks house...I'd be there on my own in a wheelchair....it's miles out of town.....he's miles out of rego with everyone... He has not been very supportive. People blame him for having such a dangerous house...but I chose to be there....that's not his fault....They are angry that it happened to me, they can't fix me either....but my girls come everyday and stay with me. They go to all the meetings with the doctors, nurses, social workers and occupational therapists and take notes on all the medications I have to take and what they are for and ask how they can help me....
22 days later I am sent to Moorong Rehab in Ryde
The 3rd day they get me into a wheelchair and I am to go to the Gym, for what! I don't get this, no-one from the hospital comes and speaks to me about what I have to do now.
I go with Jenni and they want to get me to transfer onto a plinth. How, I can't lift my leg over it's too heavy. I have no balance. I am petrified of falling out of the chair. I don't feel strong enough and yet I thought I was pretty fit.
Look, can I just put my legs in that machine so my legs don't forget how to walk.....if I do that everyday they will remember and just do it won't they?.. I have been up for a while and I'm tired I need a rest..back to bed...next day they want me up again.....Hold on... you get 4 days rest when you have a baby and I have just had major surgery and I have stitches in my back and on my hip where they did a bone graft.. not today..If I was ok to do all this gym stuff, why am I on heaps of pain killers still.... this is too real, like it's really happening and it'a not going away or getting better.
The days now run into each other.The food is terrible so I can't eat it. My brother Lee and his wife Lisa have come to see me. Lee looks so sad and I can tell he is not handling this at all, my other Paul rings from Texas USA. Damn what have I done!!! The phone rings all day and Jenni has to take the calls as I can't say it again "I fell off the ladder and broke my back"
My girls Donna, Suzie, Jenni, Tina, Alison and Billie-Jean come visit with some of their partners and my newest grandchild Lola around 5 weeks old.She is hard to hold as I have no balance. I'm a grandma, I'm supposed to be able to cuddle and play with my grandchildren. This is punishment. This isn't fair...., I had planned to do so many things with my 12 grandchildren. All that is going to change.
My Sydney friends drop in too. I'm moved in and out of the men's ward when no-one has an infection. I can't believe still that this is real. The surgeon has come in to tell me I will never walk again, again, like he has to make the point. But I can feel things, I tried to move my toes and my right toe moved. Alison was there, she saw it. But no, even though I tell the nurses I am told again. You will never walk again.
Nightmares every night, I am dreaming about the fall over and over. The crash of the ladder.....oh why couldn't I have held on and not fallen back onto it. Why didn't I check it better....Why was I in such a hurry....oh yes I needed to go to the toilet..why didn't I just hold on until Rick was finfished in there...all day and night I'm thinking.. thinking.
Every night staff come in to turn me over to stop pressure sores. Every 2 hours... I'm tired it's too much to come to terms with.I can't turn myself or move my legs as they are too heavy... I'm sorry... sorry... my girls have all been crying .. so have some of my friends. I get lot's of phone calls from friends and family far and wide.They send flowers and cards and I am in the hospital bed in the ward so I feel that I am just sick and that I am going to get better and my legs will start to work. I have to go to see the social worker..she's nice..she'll fix things she is sorting things out. I have to fill out forms to get on a disibility pension......Oh my God... I've lost my job...I loved that job...I will have to live somewhere else...can't go back to Ricks house...I'd be there on my own in a wheelchair....it's miles out of town.....he's miles out of rego with everyone... He has not been very supportive. People blame him for having such a dangerous house...but I chose to be there....that's not his fault....They are angry that it happened to me, they can't fix me either....but my girls come everyday and stay with me. They go to all the meetings with the doctors, nurses, social workers and occupational therapists and take notes on all the medications I have to take and what they are for and ask how they can help me....
22 days later I am sent to Moorong Rehab in Ryde
Saturday, July 26, 2008
"You gotta lot of nerve to say you are my friend"--Bob Dylan
I am drifting, the next minute Rick says the ambulance is here. I awake and the ambulance men are at my side asking me what had happened and I tell them and I tell them the pain is really bad they put a needle into my hand to give me something for the pain. The next thing I remember is Suzie being next to me and she is reasurring me that I'm going to be ok. The ambulance guys don't want to take me to the hospital by road so they ring for the helicopter service. I am getting really cold now. I need a blanket, I'm so cold. The news comes back that they have to wait for a helicopter from Tamworth as the one from Lismore is in service. But it's a wait of 4 hours. I just want to get to the hospital to get fixed. This is not good. I am too cold, I don't want to wait. They have a board under me, they are moving me, they have moved me closer to the fire. I can hear the helicopter and they say they have to land in the next paddock I remember being carried to the helicopter over rough ground.
I don't know who came with me but next I am at the hospital. Suzie, Jenni and Alison are there, my sister Linda and Mum and Dad. They all look so worried. They have been there for hours waiting for me to arrive. They have known since around 9 o'clock and now its 12 noon. Alison is crying with Suzie. I have to get X rayed. I am told that my back is broken and I have to be flown down to Sydney straight away. I am packed up in what feels like polystyrene pellets and hung in a hammock ( I don't know if that is right, it's what I think I can remember) in a plane to Sydney and my daughter Jenni is with me. She is scared of flying but I'm glad I'm not on my own. I'm also glad that I'm able to stay asleep and not feel too much pain.
Next I'm in North Shore Hospital and the doctors saying that they will operate on me tomorrow as it is too late now for a theatre. I'm upset as I want to be fixed now then the pain will start to stop.
It's the next day. I am given the option of either have rods and screws in my back and be able to move about straight away or be put in a cast and stay rigid for 6 weeks, which might not be successful. Rick has arrived with my mum. I'm in so much pain now so I tell them to do what's best and they go for the rods and screws....... I'm away again....wake up in a bed in a ward with Jenni there..... it's so good to see her...good on ya Jen
I'm in a ward with 3 blokes... and I'm in alot of pain and the phone is ringing.....Oh God, this is not good..but Jenni is there...and mum..all day...I'm sleeping...
The phone keeps ringing and everyone is calling me to see how I am and wishing me well. I'm amazed at how many people know now. I'm getting visitors...brother Lee and wife Lisa, my friend Joanne and Winky.... so many people ring and come but I am under the influence of some pretty big drugs so it's all a bit blurry. I am aware that the other patients have to listen to me saying over and over " I fell off a ladder and broke my back"
Rick has come in a few times but is not keen to stay around. He goes visiting his friends and goes site seeing. He has not behaved well and has said and done some silly and unkind things. I'm so dissapointed... I lived with this guy....I thought he would be there for me, I thought that he cared about me....I thought he loved me....he was having a bad time and he was blaming me. He said that I fell off a ladder and ruined his life....... It was his ladder in his house.
I will wake up and it all won't be true..will it? Please God don't let it all be true... I'm going to get better and tomorrow it will be different......
I don't know who came with me but next I am at the hospital. Suzie, Jenni and Alison are there, my sister Linda and Mum and Dad. They all look so worried. They have been there for hours waiting for me to arrive. They have known since around 9 o'clock and now its 12 noon. Alison is crying with Suzie. I have to get X rayed. I am told that my back is broken and I have to be flown down to Sydney straight away. I am packed up in what feels like polystyrene pellets and hung in a hammock ( I don't know if that is right, it's what I think I can remember) in a plane to Sydney and my daughter Jenni is with me. She is scared of flying but I'm glad I'm not on my own. I'm also glad that I'm able to stay asleep and not feel too much pain.
Next I'm in North Shore Hospital and the doctors saying that they will operate on me tomorrow as it is too late now for a theatre. I'm upset as I want to be fixed now then the pain will start to stop.
It's the next day. I am given the option of either have rods and screws in my back and be able to move about straight away or be put in a cast and stay rigid for 6 weeks, which might not be successful. Rick has arrived with my mum. I'm in so much pain now so I tell them to do what's best and they go for the rods and screws....... I'm away again....wake up in a bed in a ward with Jenni there..... it's so good to see her...good on ya Jen
I'm in a ward with 3 blokes... and I'm in alot of pain and the phone is ringing.....Oh God, this is not good..but Jenni is there...and mum..all day...I'm sleeping...
The phone keeps ringing and everyone is calling me to see how I am and wishing me well. I'm amazed at how many people know now. I'm getting visitors...brother Lee and wife Lisa, my friend Joanne and Winky.... so many people ring and come but I am under the influence of some pretty big drugs so it's all a bit blurry. I am aware that the other patients have to listen to me saying over and over " I fell off a ladder and broke my back"
Rick has come in a few times but is not keen to stay around. He goes visiting his friends and goes site seeing. He has not behaved well and has said and done some silly and unkind things. I'm so dissapointed... I lived with this guy....I thought he would be there for me, I thought that he cared about me....I thought he loved me....he was having a bad time and he was blaming me. He said that I fell off a ladder and ruined his life....... It was his ladder in his house.
I will wake up and it all won't be true..will it? Please God don't let it all be true... I'm going to get better and tomorrow it will be different......
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