Aa
In hospital
Hi,
I have been in hospital for three days. I collapsed at my GPs office. I was there to have a blood test but didn't make it.
I woke up covered in vomit, I had also been incontinent for bladder and bowels. I kept vomiting and coming in and out of consciousness and my GP couldn't get a blood pressure so I was taken by ambulance to the nearest hospital with lights and sirens.
I was treated in the resus room with lots of IV fluids and had blood tests. I was also low on oxygen so I had to have O2 via a mask. They thought I had septic shock because my blood pressure was very low 50/30 and because my blood showed low neutrophils of 0.4. I was supposed to be admitted to ICU but they didn't have a sterile isolation room so they transferred me by ambulance to this hospital.
I saw my normal neuro and hematologist here and they decided that my neuro condition has worsened and is now affecting the part of the CNS that controls vital functions like blood pressure and breathing. The neuro called it autonomic something or other.
Anyway I have been here a while now and I'm on a continuous IV of potassium in my hand and another IV in my heart that I have copper treatments through. My blood pressure has come up to 85/40 as long as I lie flat. I feel a lot better but still have a long way to go.
My neuro said yesterday that he was hopeful that the treatment will improve the CNS problem or I might be in BIG trouble. My hematologist is worried that my diaphragm will stop working and I won't be able to breathe.
All in all it's been a traumatic and nasty couple of days.
Has anyone ever heard of this CNS thing before?
Regards
I have been in hospital for three days. I collapsed at my GPs office. I was there to have a blood test but didn't make it.
I woke up covered in vomit, I had also been incontinent for bladder and bowels. I kept vomiting and coming in and out of consciousness and my GP couldn't get a blood pressure so I was taken by ambulance to the nearest hospital with lights and sirens.
I was treated in the resus room with lots of IV fluids and had blood tests. I was also low on oxygen so I had to have O2 via a mask. They thought I had septic shock because my blood pressure was very low 50/30 and because my blood showed low neutrophils of 0.4. I was supposed to be admitted to ICU but they didn't have a sterile isolation room so they transferred me by ambulance to this hospital.
I saw my normal neuro and hematologist here and they decided that my neuro condition has worsened and is now affecting the part of the CNS that controls vital functions like blood pressure and breathing. The neuro called it autonomic something or other.
Anyway I have been here a while now and I'm on a continuous IV of potassium in my hand and another IV in my heart that I have copper treatments through. My blood pressure has come up to 85/40 as long as I lie flat. I feel a lot better but still have a long way to go.
My neuro said yesterday that he was hopeful that the treatment will improve the CNS problem or I might be in BIG trouble. My hematologist is worried that my diaphragm will stop working and I won't be able to breathe.
All in all it's been a traumatic and nasty couple of days.
Has anyone ever heard of this CNS thing before?
Regards
Teeny-
I'm not sure how I missed so much of your saga (except I worked too much this week :-(), but I've got to say, you've been down a hard road! I've also noticed you have a rebellious streak! Time to use that rebellion and control (hunger strike?!?) to take control of what you CAN do.
I love that you're doing weights and self propelling your chair. Coming to a place of acceptance is hard work, and I know you can do this. We all are where we are in this path. Keep working at it. Keep proving your neuro wrong. Be the strong willed person you've shown us you are, here on the forum!
Acceptance is not surrender!! See you at home, Wednesday!!
Big Hugs, and sending good thoughts,
Lisa
I'm not sure how I missed so much of your saga (except I worked too much this week :-(), but I've got to say, you've been down a hard road! I've also noticed you have a rebellious streak! Time to use that rebellion and control (hunger strike?!?) to take control of what you CAN do.
I love that you're doing weights and self propelling your chair. Coming to a place of acceptance is hard work, and I know you can do this. We all are where we are in this path. Keep working at it. Keep proving your neuro wrong. Be the strong willed person you've shown us you are, here on the forum!
Acceptance is not surrender!! See you at home, Wednesday!!
Big Hugs, and sending good thoughts,
Lisa
I am glad the Neuro came to see you and looked at your medication. Anything to help, right? I am so sorry you are having to go through all of this. You have had just a lot go on and absorb in a small amount of time. I can't offer much except for an ear, friendship and prayers. One day at a time, one thing (or ten in your case LOL!) at a time, might get some answers today and maybe some tomorrow. That's how you keep going I think. I am so humbled by what a strong person you are and how you just keep fighting. You are truly an inspiration! I hope you do get to go home Wednesday. Know that i am thinking of you!
The neuro came to see me :-(
He could hardly believe his eyes. He told me he was sure I was never going to walk again!
Having said that, he examined me and said I still had a lot of spasticity and he didn't agree with stopping the midday diazepam. He said he was going to leave a note in my chart for the rehab doc to increase, not decrease the diazepam.
I have just bought my wheelchair and shower transfer chair/board on eBay. Hopefully they won't take long for delivery.
I really want people to know that without this forum and your support, I really would have been in a very bad head space. I mean even worse than I was and that would have been impossible to live through.
In the space of a month, I lost my little Teeny dog (that's why I'm called teeny turner), a good friend moved to France, my brother decided he wasn't going to be part of the family (alcohol) and I got sick and lost my independence (such as it was).
Just when you think that things are as bad as they can get.....they get worse ;-)
Thanks again.
Chirl
He could hardly believe his eyes. He told me he was sure I was never going to walk again!
Having said that, he examined me and said I still had a lot of spasticity and he didn't agree with stopping the midday diazepam. He said he was going to leave a note in my chart for the rehab doc to increase, not decrease the diazepam.
I have just bought my wheelchair and shower transfer chair/board on eBay. Hopefully they won't take long for delivery.
I really want people to know that without this forum and your support, I really would have been in a very bad head space. I mean even worse than I was and that would have been impossible to live through.
In the space of a month, I lost my little Teeny dog (that's why I'm called teeny turner), a good friend moved to France, my brother decided he wasn't going to be part of the family (alcohol) and I got sick and lost my independence (such as it was).
Just when you think that things are as bad as they can get.....they get worse ;-)
Thanks again.
Chirl
That certainly is a lot of news to update us on. I am so glad to hear you are back to eating, working out, and it sounds like your spirits are up as well. Keep doing what you got to do - but it sounds like they are making you do that !
Good luck today with your new day - and keep updating us. There are a lot of us here follow your progress.
hugs,
Lu
Good luck today with your new day - and keep updating us. There are a lot of us here follow your progress.
hugs,
Lu
Yay! for the lose of the midday sedative. You are certainly taking advantage of your new freedom and cognition to get back physically. Just don't do too much too fast so you don't slide back down the hill.
Will be keeping you in my thoughts as you struggle to regain yours strength!
Ren
Will be keeping you in my thoughts as you struggle to regain yours strength!
Ren
Yay, the doctor just came in and agreed to stop the midday sedative. If I start going into spasm/spasticity she is leaving it to my judgement when to ask for more drugs.
I think this is a test of my insight and cognition but I'm happy to go with it. It's 8.45am here and so far I've showered and dressed myself, gone for two walks with my rollator, done two lots of arm exercises and gone for a ride in my loan wheelchair. Later I'm going to the gym and then another two rounds of walking etc this afternoon.
I'm still not allowed to mix with other people because of my MRSA and the nurses physios etc still have to gown and glove to come near me.
It's State voting here today and in Australia it's compulsory to vote, otherwise you get a hefty fine. So I have my postal vote all filled out and witnessed and sealed and ready to go when the electoral workers come to collect them. It looks as if finally we are going to get rid of our incompetent Labor government and get a more dynamic, pro business Liberal/National government instead.
Our State used to be wealthy with a big budget surplus but the incompetence of the government spent all the State revenue, borrowed money from overseas and sold off all out State owned assets like the Railways and Electrical stations etc. Moody's downgraded our credit rating from AAA to AA + We are all going to have to tighten our belts to get the State into the black again. I don't want us to end up like Greece.
Thanks for listening.
Regards
I think this is a test of my insight and cognition but I'm happy to go with it. It's 8.45am here and so far I've showered and dressed myself, gone for two walks with my rollator, done two lots of arm exercises and gone for a ride in my loan wheelchair. Later I'm going to the gym and then another two rounds of walking etc this afternoon.
I'm still not allowed to mix with other people because of my MRSA and the nurses physios etc still have to gown and glove to come near me.
It's State voting here today and in Australia it's compulsory to vote, otherwise you get a hefty fine. So I have my postal vote all filled out and witnessed and sealed and ready to go when the electoral workers come to collect them. It looks as if finally we are going to get rid of our incompetent Labor government and get a more dynamic, pro business Liberal/National government instead.
Our State used to be wealthy with a big budget surplus but the incompetence of the government spent all the State revenue, borrowed money from overseas and sold off all out State owned assets like the Railways and Electrical stations etc. Moody's downgraded our credit rating from AAA to AA + We are all going to have to tighten our belts to get the State into the black again. I don't want us to end up like Greece.
Thanks for listening.
Regards
I'm glad to see that there are some bright spots in your rehab. The meds sound like they need adjusting but at least they are trying.
Consistent rehab exercises is a quicker way out of the door and show them that you have the ability to stay out of the electric wheelchair.
You have a lot of hard work ahead of you and it will be tough. Perhaps your control issue should change to the "no way I'm getting an electric chair" . Prove them wrong! Show them you can have the mobility you need without it.
Accept the home housework. what a dream! I'd pay for that in an instance!!:)
You medically aren't stable yet but it sounds like they are trying. Keep up the hard work at rehab to prove them wrong and stick to the rest of the rehab program despite the fact it seems like you have no choice. Have you attempted negotiations with the rehab doc, change times. Refuse meds on occasion if it feels right to you , but NOT out of stubbornness.
It sounds like you are having small improvements and that's GOOD news! Keep up the HARD work. Keeping you in my thoughts and prayers!!
Ren
Consistent rehab exercises is a quicker way out of the door and show them that you have the ability to stay out of the electric wheelchair.
You have a lot of hard work ahead of you and it will be tough. Perhaps your control issue should change to the "no way I'm getting an electric chair" . Prove them wrong! Show them you can have the mobility you need without it.
Accept the home housework. what a dream! I'd pay for that in an instance!!:)
You medically aren't stable yet but it sounds like they are trying. Keep up the hard work at rehab to prove them wrong and stick to the rest of the rehab program despite the fact it seems like you have no choice. Have you attempted negotiations with the rehab doc, change times. Refuse meds on occasion if it feels right to you , but NOT out of stubbornness.
It sounds like you are having small improvements and that's GOOD news! Keep up the HARD work. Keeping you in my thoughts and prayers!!
Ren
I'm not sure what to say about all the other news, except that I am glad you will be getting some help.
I am, however, very relieved that you are eating again.
(((Hugs))),
Tammy
I am, however, very relieved that you are eating again.
(((Hugs))),
Tammy
Well, it's one in the morning and the drugs are having less effect.
I have good days and bad. Yesterday was bad. I woke up and couldn't move my legs again, they were straight out with the feet inverted and I wasn't going anywhere. I had dared to get my hopes up because I had been doing so well at the gym with the physio.
The nurses tried to get me out of bed to take me to the toilet but gave up because I was as stiff as a board. When the doctor came in she examined me and ordered a huge dose od Diazapam and I slept until midday. When I woke up I could move and bend my left leg a little, so I finally got to be taken to the toilet and have a shower. There is no dodging the work in this place, so io was taken to the gym and we worked on my arms, core strength and left leg (doing pilates too).
I had another copper infusion in the afternoon and an extra dose of diazepam. I slept okay and when I woke up this morning, both my legs worked again (what a relief).
My BP varies between 80/30 to 90/55, so although it's not critically low, it's still not behaving itself. I finally asked the doctor if the blood tests show that my bone marrow failure has improved but she said that it's still not looking good. The swelling in my feet and legs have improved with the compression stockings and elevation when I'm sitting out.
I've stopped my hunger strike because the lady who brings the meals is so sweet that she offered to cook me home cooked meals and bring them in for me. She thought I just didn't like the food. I felt guilty for upsetting her and realized what a stupid thing I was doing.
The OT has visited my home and identified some potential problems and has arranged for a government department to come to the house and do the work. I'll only have to pay for materials, not labour costs. I'm going to have the bathroom fully altered to suit me better (it's not bad but could be improved) and I have to pay for that myself.
I have been assessed for the kind of wheelchair that I need and there is NO WAY they want me to get an electric chair (damn). They have decided I need an Otto Bock 18 inch self propelled with anti tippers. I was shocked to find that they start at $1200.00. I have been given weights and I have to do arm weights and strengthening exercises at least 6 to 10 times a day. I also have a loan chair at the moment and I have to practice by wheeling myself around the ward a few times a day (people scatter when they see me coming).
The doctor has warned me that when I get home, there will be days when I won't be able to get out of bed and that I need to take extra doses of relaxants and sleep until my muscles relax then try again. She said that sometimes I'm just going to have to call an ambulance and ask for help when I'm having bad days. I have to carry my mobile phone at all times.
The OT is also arranging for someone to come in and do the housework for me, I have to make a co payment for this but the government helps with the majority of the cost. I'm also going to be given a card that will allow me to catch taxis at a special discounted rate (half price) including those taxis that take wheelchairs. Also I've been told that the bus service is obliged by law to take people in wheelchairs and the drivers are compelled to assist with entering and existing the bus.
They had a ward meeting about me yesterday and the doctor said that all the ancillary staff are happy with my efforts and progress to date and discharge next Wednesday is still the aim.
Sorry to every one for my negative attitude but in my defense I did feel very unwell for a while and I was also being given nothing but doom and gloom from my neuro doc. I haven't seen him in a week and my mental attitude has improved with all the positive encouragement from the rehab people.
You never know, I might even come to like the rehab doc even though she is really blunt and direct. She says things like "you will wear incontinence pads to gym" , "you will take laxatives every day", "you will take your sedatives without question"......there is absolutely no negotiation with her. It's her way or you stay here for ever.
I was even pampered a little bit the other day. A lady came around and gave me a hand and foot massage...total bliss!
Better go back to bed before I get caught ;-)
Regards
I have good days and bad. Yesterday was bad. I woke up and couldn't move my legs again, they were straight out with the feet inverted and I wasn't going anywhere. I had dared to get my hopes up because I had been doing so well at the gym with the physio.
The nurses tried to get me out of bed to take me to the toilet but gave up because I was as stiff as a board. When the doctor came in she examined me and ordered a huge dose od Diazapam and I slept until midday. When I woke up I could move and bend my left leg a little, so I finally got to be taken to the toilet and have a shower. There is no dodging the work in this place, so io was taken to the gym and we worked on my arms, core strength and left leg (doing pilates too).
I had another copper infusion in the afternoon and an extra dose of diazepam. I slept okay and when I woke up this morning, both my legs worked again (what a relief).
My BP varies between 80/30 to 90/55, so although it's not critically low, it's still not behaving itself. I finally asked the doctor if the blood tests show that my bone marrow failure has improved but she said that it's still not looking good. The swelling in my feet and legs have improved with the compression stockings and elevation when I'm sitting out.
I've stopped my hunger strike because the lady who brings the meals is so sweet that she offered to cook me home cooked meals and bring them in for me. She thought I just didn't like the food. I felt guilty for upsetting her and realized what a stupid thing I was doing.
The OT has visited my home and identified some potential problems and has arranged for a government department to come to the house and do the work. I'll only have to pay for materials, not labour costs. I'm going to have the bathroom fully altered to suit me better (it's not bad but could be improved) and I have to pay for that myself.
I have been assessed for the kind of wheelchair that I need and there is NO WAY they want me to get an electric chair (damn). They have decided I need an Otto Bock 18 inch self propelled with anti tippers. I was shocked to find that they start at $1200.00. I have been given weights and I have to do arm weights and strengthening exercises at least 6 to 10 times a day. I also have a loan chair at the moment and I have to practice by wheeling myself around the ward a few times a day (people scatter when they see me coming).
The doctor has warned me that when I get home, there will be days when I won't be able to get out of bed and that I need to take extra doses of relaxants and sleep until my muscles relax then try again. She said that sometimes I'm just going to have to call an ambulance and ask for help when I'm having bad days. I have to carry my mobile phone at all times.
The OT is also arranging for someone to come in and do the housework for me, I have to make a co payment for this but the government helps with the majority of the cost. I'm also going to be given a card that will allow me to catch taxis at a special discounted rate (half price) including those taxis that take wheelchairs. Also I've been told that the bus service is obliged by law to take people in wheelchairs and the drivers are compelled to assist with entering and existing the bus.
They had a ward meeting about me yesterday and the doctor said that all the ancillary staff are happy with my efforts and progress to date and discharge next Wednesday is still the aim.
Sorry to every one for my negative attitude but in my defense I did feel very unwell for a while and I was also being given nothing but doom and gloom from my neuro doc. I haven't seen him in a week and my mental attitude has improved with all the positive encouragement from the rehab people.
You never know, I might even come to like the rehab doc even though she is really blunt and direct. She says things like "you will wear incontinence pads to gym" , "you will take laxatives every day", "you will take your sedatives without question"......there is absolutely no negotiation with her. It's her way or you stay here for ever.
I was even pampered a little bit the other day. A lady came around and gave me a hand and foot massage...total bliss!
Better go back to bed before I get caught ;-)
Regards
YES! The neuro is going to be proven wrong and you already are doing a great job of that! As time passes you will get stronger as your body recovers from this terrible ordeal.
BUT I agree with everyone else on this hunger strike, please stop and start eating. Gain control by taking action to get better, Eat! Your body will not be able to repair its self without nourishment and its going to be a downhill journey. Don't let this happen!! PLEASE take some control, right now you think you have control BUT you don't.... This is your health, your life and NO1 in that hospital cares about that more than you do. You know this is true, you want to go home. So help yourself. EAT and team up with your body to take control of this situation!!
Reading about your daily rotinue reminded me of my time working in a carehome, the schedule there was much the same. It's terrible and boring and you feel powerless, BUT this is only temp if you do everything in your POWER to get out of there!! Eat be positive. Get some family or friends around to spend time with you. Chat to others in the hospital. Just keep fighting!! Thinking of you all day today and please EAT! Take control!! X
BUT I agree with everyone else on this hunger strike, please stop and start eating. Gain control by taking action to get better, Eat! Your body will not be able to repair its self without nourishment and its going to be a downhill journey. Don't let this happen!! PLEASE take some control, right now you think you have control BUT you don't.... This is your health, your life and NO1 in that hospital cares about that more than you do. You know this is true, you want to go home. So help yourself. EAT and team up with your body to take control of this situation!!
Reading about your daily rotinue reminded me of my time working in a carehome, the schedule there was much the same. It's terrible and boring and you feel powerless, BUT this is only temp if you do everything in your POWER to get out of there!! Eat be positive. Get some family or friends around to spend time with you. Chat to others in the hospital. Just keep fighting!! Thinking of you all day today and please EAT! Take control!! X
I am so glad to see you checking in here - I keep hoping soemthing will turn the corner for you. Please consider giving up the hunger strike unless death is your goal. You are bargaining to go home , so how about you do what you can to make that happen?
hugs and give us an update,
L
hugs and give us an update,
L
Teeny,
I know personally, 4 times this year, how it feels to lose control of your life and have others make decisions concerning your life without input from you but I have to agree with JJ, that it just might backfire on you.
Fasting changes your body's chemical levels and if they don't know about the fast (forget about them not checking, didn't check mine either) it could cause them to panic and change your treatment thus delaying your departure from the hospital.
Please reconsider your actions and be honest and upfront with them. Hiding your medication and not eating will only slow your progress towards that target of getting released.
Hugs,
Ren
I know personally, 4 times this year, how it feels to lose control of your life and have others make decisions concerning your life without input from you but I have to agree with JJ, that it just might backfire on you.
Fasting changes your body's chemical levels and if they don't know about the fast (forget about them not checking, didn't check mine either) it could cause them to panic and change your treatment thus delaying your departure from the hospital.
Please reconsider your actions and be honest and upfront with them. Hiding your medication and not eating will only slow your progress towards that target of getting released.
Hugs,
Ren
I can't help share Tammy's concern. I'm afraid you might be shooting yourself in the foot! Allowing yourself to become malnourished wont get you home any faster. Nobody at the hospital is trying to hurt you, so take control by doing all you can to take care of yourself.
COMMUNITY LEADER
I am so very pleased you've still got your fighting spirit, though the hunger strike might actually back fire on you and end up keeping you there even longer. Having never been in your position i'm not really sure how you go about 'escaping' or even if thats really a good idea, so soon.
Lets be honest here, you could of lost your life this week!
No beating around the bush, now, you must be good so you ARE well enough to come home. Please, please dont screw up your recovery because of the lack of control you feel, be brave, be bold and tell them exactly whats going on in your head or at the very least, please think about what your trying acheive and if there's a better way for you to get what you want!
HUGS...............JJ
Lets be honest here, you could of lost your life this week!
No beating around the bush, now, you must be good so you ARE well enough to come home. Please, please dont screw up your recovery because of the lack of control you feel, be brave, be bold and tell them exactly whats going on in your head or at the very least, please think about what your trying acheive and if there's a better way for you to get what you want!
HUGS...............JJ
I truly do understand the need to feel you have control over something, but I am very concerned about your choice not to eat. Refusing to eat can cause serious damage to all your internal organs. Please reconsider...
Tammy
Tammy
The doctor has just been and I told her I want them to book an ambulance to take me home. She said maybe end of next week. I said let's negotiate. She said next Wednesday. That was as good as I got.
Some one is going to my house tomorrow to see if I need to do anything to make it easier for me. You know wheelchair ramps etc. Most of my house is already adapted so there shouldn't be much to do.
I have had my IV ceased to see how I go without it. Hooray! Bad news is there might be something wrong with my heart that's causing my legs to swell. This piece of wisdom comes after three days of telling the doctor and nurses about them. (right foot is odd colour too).
Still on hunger strike, it's been quite a few days now. My, these caring professionals are so observant aren't they? (sarcasm). I hid the sedative they gave me last night and I feel a lot more alert this morning. Unfortunately, I was watched this morning so I had to take it.
I do have things to do. I have this iPad and I have a book. Apparently the TV is an internet TV and it has full cable facility with free movies etc. I've never switched it on. My eyesight fades in and out and reading and TV are just sheer hard work. At least with this iPad I can do a bit and stop and change the font size etc.
My breakfast of poached egg has just arrived and I have the task of seeing how I can dump it down the toilet without getting caught ;-)
I like my little game. It makes me feel less powerless.
Regards
Some one is going to my house tomorrow to see if I need to do anything to make it easier for me. You know wheelchair ramps etc. Most of my house is already adapted so there shouldn't be much to do.
I have had my IV ceased to see how I go without it. Hooray! Bad news is there might be something wrong with my heart that's causing my legs to swell. This piece of wisdom comes after three days of telling the doctor and nurses about them. (right foot is odd colour too).
Still on hunger strike, it's been quite a few days now. My, these caring professionals are so observant aren't they? (sarcasm). I hid the sedative they gave me last night and I feel a lot more alert this morning. Unfortunately, I was watched this morning so I had to take it.
I do have things to do. I have this iPad and I have a book. Apparently the TV is an internet TV and it has full cable facility with free movies etc. I've never switched it on. My eyesight fades in and out and reading and TV are just sheer hard work. At least with this iPad I can do a bit and stop and change the font size etc.
My breakfast of poached egg has just arrived and I have the task of seeing how I can dump it down the toilet without getting caught ;-)
I like my little game. It makes me feel less powerless.
Regards
Oh Teeny, you have been in my prayers and will continue to be. It would be wonderful if someone could bring you some reading materials or word searches or SOMETHING! Have you or anyone spoken to your family yet? I just can't imagine going through all that you have been through and are cotinuing to go through without someone close to share in your experiences (whether good or bad).
Try to keep us updated :) I guess we'll know if you got drugged if we see your words taper away....l.....and.......hee hee.
Lots of love and HUGS!!!
Stacie
Try to keep us updated :) I guess we'll know if you got drugged if we see your words taper away....l.....and.......hee hee.
Lots of love and HUGS!!!
Stacie
I have been thinking about you and I am so glad to hear that you are doing much better than expected! But, yeah, your blood pressure is still pretty ridiculous, no wonder you don't think their plan to improve it is working. :)
I can understand why you don't like it where you are now, it sounds a bit like a prison! lol. What a rebel you are with your hunger strike; I would be worried that would slow my progress and cause a delay in getting out of that place. Hopefully you won't have to be there long. Are you still planning on trying to arrange an in home caregiver?
I can understand why you don't like it where you are now, it sounds a bit like a prison! lol. What a rebel you are with your hunger strike; I would be worried that would slow my progress and cause a delay in getting out of that place. Hopefully you won't have to be there long. Are you still planning on trying to arrange an in home caregiver?
I'm proving my neuro wrong.
I'm still alive and kicking. My legs have started working. I'm having high dose Valium and the spasming has improved. I still have a large amount of hypertonicity but the physic and I are working on that.
I moved to rehab on Monday and today I waked a few meters with a rollater and the physio and an assistant who pushed the IV pole.
I really don't like it here though. The routine starts at 6 am. When you are turfed out of bed and sat on the toilet by a personal carer while they make your bed. Then you are sat in an upright (uncomfortable) chair until breakfast. Then it's into the shower with the OT and personal carer (no privacy) . Then back in the chair for the rehab doctor to come, blood tests etc.
Then it's sit in the chair for morning tea then lunch etc until 3pm when it's physio until 4 then back to the chair until 8.30 at night when they give out meds (drug you to make you sleep, so you don't bother the night staff) and get you ready for bed until it all starts again the next day.
Basically it's sitting in a chair around twelve hours a day in a room by yourself with nothing to do except look out the window (good view though). And the doctor says she's not worried that my legs are swollen and my right foot is a dusky pink colour,, it's probably just the steroids!! I forgot to mention the steroids didn't I? I have daily IV hydrocortisone but my blood pressure is still not good so now I have a mineral corticoid as well (Fludrocortisone) which is supposed to increase salt retention and help the BP to rise. Today it was 90/37. I don't think it's working, but what would I know?
I have gone on a hunger strike and I haven't eaten since I've been here. I just want to go home but when I made a fuss about it, they drugged me. So the hunger strike will continue. Amazingly they haven't even noticed. This suits my purposes very well. The longer I can go without them noticing the more I think I have control over some aspect of my life.
Some of the nurses here seem nice but some are absolutely brainless twits. The physio is really lovely. I haven't formed much of an opinion about the doctor yet but I think it's verging on being negative.
Oh well, it's 2 in the morning and if anyone comes in and catches me I'll probably be drugged again so I'll sign off.
Bye for now.
Regards
I'm still alive and kicking. My legs have started working. I'm having high dose Valium and the spasming has improved. I still have a large amount of hypertonicity but the physic and I are working on that.
I moved to rehab on Monday and today I waked a few meters with a rollater and the physio and an assistant who pushed the IV pole.
I really don't like it here though. The routine starts at 6 am. When you are turfed out of bed and sat on the toilet by a personal carer while they make your bed. Then you are sat in an upright (uncomfortable) chair until breakfast. Then it's into the shower with the OT and personal carer (no privacy) . Then back in the chair for the rehab doctor to come, blood tests etc.
Then it's sit in the chair for morning tea then lunch etc until 3pm when it's physio until 4 then back to the chair until 8.30 at night when they give out meds (drug you to make you sleep, so you don't bother the night staff) and get you ready for bed until it all starts again the next day.
Basically it's sitting in a chair around twelve hours a day in a room by yourself with nothing to do except look out the window (good view though). And the doctor says she's not worried that my legs are swollen and my right foot is a dusky pink colour,, it's probably just the steroids!! I forgot to mention the steroids didn't I? I have daily IV hydrocortisone but my blood pressure is still not good so now I have a mineral corticoid as well (Fludrocortisone) which is supposed to increase salt retention and help the BP to rise. Today it was 90/37. I don't think it's working, but what would I know?
I have gone on a hunger strike and I haven't eaten since I've been here. I just want to go home but when I made a fuss about it, they drugged me. So the hunger strike will continue. Amazingly they haven't even noticed. This suits my purposes very well. The longer I can go without them noticing the more I think I have control over some aspect of my life.
Some of the nurses here seem nice but some are absolutely brainless twits. The physio is really lovely. I haven't formed much of an opinion about the doctor yet but I think it's verging on being negative.
Oh well, it's 2 in the morning and if anyone comes in and catches me I'll probably be drugged again so I'll sign off.
Bye for now.
Regards
I am so sorry for what is happening to you. Please ask what services can be provided to you there at the hospital. Here we have social workers, grief counselors, religous counseling and support. See if they have what you need and want. You have so much coming at you and it might be good to have an outside point of view and support to help keep all of this straight. I hope they have your pain somewhat under control. I wish I could be of more help to you. I can't take away what you are going through but we sure are thinking of you and praying. I wish you a more peaceful day.
am so sorry this has happened to you but before we shoot all the nurses and doctors for MRSA, please know that many people are now being ADMITTED already possessing MRSA and its recommended that if you are going to
have any type of surgery,that you be tested for MRSA before being admitted so that you can have proper medication.
Hoping you get well soon.......at least you have a private room now!!!
have any type of surgery,that you be tested for MRSA before being admitted so that you can have proper medication.
Hoping you get well soon.......at least you have a private room now!!!
I'm really sorry to hear this news. Drs are some times wrong though and maybe you'll make some recovery. I'm not trying to get your hopes up or anything like that but having a positive outlook can really help. I will be hoping for you! Even if not, even if this is it then you will be ok. You can learn to live a happy and full life still. Talk to your family and I think having a social worker present like sidesteps said would really help with breaking the news.
Stay strong and please know you are in my thoughts always these days.
Stay strong and please know you are in my thoughts always these days.
We have social workers here in the states that will help with telling your family. Is there someone like that in your hospital? I would utilize all the services there. I am sorry you are going though this.
Oh dear, this is a awful lot to put on a one person and you should speak to your family because they need to know and you need to get it off your chest. I am SO sorry what your going through, you are so brave.
I´m in loss of words......
I´m sending my best wishes and prayers your way.
Dagun
I´m in loss of words......
I´m sending my best wishes and prayers your way.
Dagun
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