...continued from Jo 999.
I am still not weeing right as its still very painful and small amounts my stomach is swollen and sore. I had various scans done to see why this was happening. The doctor came and another catheter was put in by a nurse, it filled up almost straight away. The DIAZEPAM was reduced to 2mg 3x a day now. I am getting a lot of spasm's in my back and legs the tablets they give me have hardly have any affect on them but am not allowed OROMORPH - the only thing that seems to work.
The Consultant came to day and said I could go home after the catheter was taken out and I could wee properly. I said I felt very week and still quite ill. He said my bladder was inflamed and that was causing the problems. The catheter was taken out about 10am but after trying so hard it hurt I still could not wee. The nurses and physio said I was not ready to go home yet as very unsteady on my feet and not strong enough to cope, I had not even walked on my own as of yet and would probably be in hospital for a few more days. Later on that day another catheter was put in number 3 this one was stopping in for a few weeks or even months. I was not very keen on this but there was no other option.DIZAPAM stopped around about now.
My head now is a lot clearer and I am more with it.
My Sat's are still down and I am still on oxygen a most of the time.
Paul came today and we both sat outside with another couple, it was so warm but the wheelchair made my back hurt.
Today the consultant came back and was extremely angry with me because I had not gone home he was very rude and it upset me a lot. The staff nurse had a go at him for talking to me like that, I thought it was very brave but she said there was no need for it, after all I was a patient there.
6am - I woke today to a blinding head ache, so bad I thought I had fallen out of bed or bean hit with a bat I could not stand sun light either. After about an hour my back went into spasms spreading to my chest and right down to my feet they were so strong and painful. These lasted all morning I was unable to move as every little movement made them a lot worse. Breathing was also hard. My oxygen was put back on again.
The ward manager - Mr Manger as I called him jokingly. He had bean helping the ladies with the pots after tea so I said he must be the manager of them. I did not know till he told me afterwards he was actually the ward manger. He stopped with me and asked what will help I said OROMORPH. I was told by the Pain Clinic I could have a similar drug called ORONORM but it made me very sick last time I had it so was not very keen they said they could give me an anti sickness drug to help but why not OROMORPH. It is so wrong as I know OROMORPH works.
He arranged to get it prescribed for me at 2pm. After about half and hour after I was given it the worst of the spasm's stopped and I was able to breathe and move slightly not too much in case the spasm's came back. I was able to have 20ml of OROMORPH every 2 hour if I needed it. The relief was almost over whelming I got very upset. When Paul came to visit me I was exhausted and so tired but pleased it was over for now.
At around 9pm I had another wave of spasm's not as strong as before but still very painful. I had some more OROMORPH. Around 11.30pm my nose began to bleed and would not stop, it poured with blood much worse than last time. The nurses tried ice and tipping my head back but it still continued to bleed running down my throat and making me cough and feel sick. My blood pressure was taken it was high, 200 over 102, no wonder my nose bled. It was high when I was in the "twilight zone" as well. I'm also on oxygen again.
The ENT Doctor was called from his bed, he said I most likely had burst a blood vessel and he would cauterise it. He numbed my nose and went ahead to stop the bleeding. The LIDOCAINE trickled down my throat and lips making them numb. I said my nips had gone numb, instead of lips, he said no dear only neck up. The bleeding stopped and I was able to go back to bed as did he. I was told no hot drinks or hot food for a least 2 weeks no blowing my nose, as I could start up the bleeding again.
I would see him about 2/3 weeks later in out patients to check all was well. Also a blood test done as I had lost a lot of it. My back was pounding as still very sore. I had more OROMORPH to help with the pain. What a day. I was told that I was meant to go home today but, it did not happen again.
Today feel very stiff and sore my nose hurts and I genuinely feel quite bad, my temperature is up as well but I am in the right place after all. I walked a little further with help but I feel so exhausted. My foot is so swollen and very painful, a typical RSD foot. None of the nurses had seen or even heard of RSD before so were amazed at the changes in my foot. I now have a FLIPFLOW devise fitted to my catheter so I do not need to be attached to a bag all the time, only at night. I just empty it like going to the toilet as usual, well sort of. Another nose bleed later on quite a bad one requiring ice it eventually stopped.
Today my foot has gone to ice cold and burning at the same time, sounds strange but thats RSD. The nurses are still amazed at the changes in my foot. I had a shower with help, it was so good, up to now I have only had washes so it was so nice. I just sat on the chair and let he water run over me for a while. The water made my nose bleed again but it was not as bad as before. I feel very tired but alot better than I have bean for a long time. A lot of people have said how much I have improved since the "twilight zone" days, as I was so ill, but I can't remember much of it.
When Paul and Andrew came to the night time visiting hours he said Sandy my dog was very ill. He thought she would not live the night. He was taking her in to the vet in the morning. I was so up set that I wanted to go home. I was told I could not go yet. After the time came for Paul and Andrew to go I really freaked out I walked down the ward on my own (something I had not done since I was admitted over 2 weeks ago) and just about collapsed near the nurses station as so up set I just wanted to get away from everybody.
I sat in the day room sobbing my heart out unsure if I would see Sandy again. A nurse sat with me till I calmed down she said I had gone in to shock. I was taken back to the ward on the understanding everyone left me alone, which they all did.
The night was very long as I did not sleep at all. My foot went into full blown spasm's and swelled up to twice the size very pain full all so I was getting a lot of pain in my back. Lots of OROMORPH later, the pain began to give in. I could not stop thinking about my little baby Sandy. I know she is old but I can not cope with her going now. I could not drink or eat as I felt so sick. Paul said he would ring with any news about her. I told him what ever happens he was not to leave her at the vets.
The phone rang it was better news she had an bad infection and would be OK. I cried the relief was so good now all I had to do is get home.
I was told had a good chance of going home to day. The Doctors came and said I could if the nurses and Physio agreed . The Doctor said they were right to keep me in another week. Two fingers up to the Consultant who said I was ready last week. I walked very well but felt very sick and very weak. I am going home at last on the third time lucky. I will not be going till after tea as there is a lot of things to sort out (drugs, catheter, letter to Doctor), but I am OK with that.
About 6.20 a Doctor came to discharge me, and went to write the letter. A little while later he came back I noticed he had cuts on his face and looked so young. He stood there and said the pharmacy is shut, I asked what does that mean? He said you can't go home as we have not got the tablets you need. I said you are joking...he said no. I felt like beating him up he said don't do that I already have bean (hence the cuts). Paul was coming down the ward and I said explain to him I am not going home, again. He did not even look at Paul and left the ward as there was nothing he could do.
The staff nurse said there might be another option and went away. She came back and said we can write a prescription for me to take to the late night chemist. After two phone calls the man at the chemist said the prescription OXYCONTIN amounts had bean written wrong and had to be changed so we had to wait for another Doctor to put it right. Any other drug would have bean alright it had to be that one - the one I can't do without its for continuous pain relief.
They knew 2 days ago I needed it but did nothing to get it . After 3 changes and 3 different doctors and them talking to the chemist. I was going home nearly 3 hours later at 9.00.
We arrived at the chemists I passed over the perspiration he looked at it and said I can not take this it has been written wrongly. I stood there and cried after all the changes it was still wrong I was in pain and starting to go in to spasm's again. The chemist said ring the ward for advise I could not home home with out it as the pain and spasm's would return and I would be back in again. They said come back and we will rewrite it - for the fourth time.
Paul dropped me off at home and went to get it changed again forth time lucky? The prescription was changed but the surname was wrong Paul said do I have to go back yet again ,but he excepted it now. At half past ten Paul arrived home with them 4 hours after we should have left the hospital.
I was home at last!
I felt very cold and in a lot of pain I took some OROMORPH which after all the fuss they made I was surprised they gave me some to take home and after a cup of tea I felt a little better. Sandy was pleased to see me as I was to see her, but she was very weak and in a lot of pain but would hopefully soon be better. I think she was pining for me as well.
Its weird you never know with RSD whats coming next. I was having a good time with pain, even managing a little run. I thought I was going up the ladder then wham, I get knocked right back down again. Being rushed into hospital and spending 19 days there. The only way is to get back up again and get well again.
I hope you are all having some good moments and some sunshine.
'till next time.
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