13th/14th April

First day home it feels a little scary after being used to hospital, and a buzz away from help but I will be OK.

Sandy is still not too good but is very pleased to see me and has hardly left my side.
I feel very stiff and quite week I got weighed after my bath and saw I had lost a least half a stone I now weigh just under 8 stone. My jeans do not fit right. I can soon loose weight but am slow to put it on again. I am not having any better nights for sleep, sort of "twilight" sleep with night mares where I wake struggling for breathe and wet with sweat, not good. I am used to no sleep but not the nightmares, hopefully they will soon go.

I had a few people come and see me which was very nice, but tiring I am having a lay down in the afternoons. Jo came with a wand/pen which can aid healing with back up support from people who have used it. The wand seems too good to be true I will be looking into it but will keep my eyes open.


I spoke to Wietse, my Physio, by phone he said he was pleased I had improved and would see me next Friday (23rd) that is something to look forward to.

Doctors today I brought him up to date on tablet changes which we both went though together I am stopping on BUSAPAN but staying off ZANAFLEX for now to see how it goes all laxatives have bean stopped as I do not need them now. The rest pretty much the same any problems to get in touch with him. Pain wise is good 4+ .

The district nurse phoned and said I should be using disposable bags for my catheter and changing the flip flow once a week for my catheter. I was not told this in the hospital at all.


I went into the green house and saw the glass had dropped down and had broken, so Paul and I had to fix it. We manged to get it done quite well but will have to get new glass very soon.

Some good news for a change, I can move the toes on my right foot something I have not bean able to do properly for 5+ years all my movement for my foot came from my knee. I did not have control over my foot. The most I could manage was a jerky type twitch, even that was only occasionally. I think may be the severe spasm's have released the muscle a bit so the nerves can work again. I don't really care how its happened. It is a big step forward.


My good friend Russ came round today we had a lot to catch up on as I had not seen him this year it was so good.

My son Andrew says he is confused not knowing you is mum or dad as I can stand to wee with the catheter and Paul has man boobs. He hopefully will not be scared for life.


I have taken the foot cradle off the bed while things are good with my foot to see if it can cope with the weight of the quilt on it. The night went very well a bit of pain, but not too much I did not have to put the cradle back on. So I was very pleased another step forward. I am coping with the catheter quite well but getting a bit of discomfort and pain. I feel stronger every day but have not got much of an appetite.


Went to do a bit of shopping and visit the crematorium, its my first time out apart from Doctors so very tired later. It was good to leave the house though. I am now taking Sandy for most of her walks she does not go very far or even very fast so we make a good team.


Wietse day. At last physio, Wietse put in needles and the best bit he massaged my foot something he is not normally able to do as it usually spasm's up - it did a bit but hardly at all. He was as pleased as I was. I brought him up to date with everything. He though it was funny I was in a ENT ward (ears nose and throat ward) and checked that the catheter was not in my ear.

I phoned the district nurse as having pain around my bladder area I thought maybe I had an infection, they came and checked but I had not. They think may be its the bladder settling down after its trauma. They did however say to phone them if no change or it gets worse, as you can get all sorts of problems. I will be pleased when I go back to the hospital to have it removed but so far I have no appointment. I wonder if the RSD has affected my bladder but have not found too much about it on the internet. I will ask Wietse next time. I almost don't want to know, as most things with RSD turn out bad.


My grandchildren came round today, with there Mum of course. The day was lovely weather and most of it was spent in the garden riding on there bikes and tractor and jumping on the trampoline, it was a really nice day, but very tiring. A good rest in the afternoon after they had gone helped a lot.


I had a rough night with sweating and pain hardly any sleep. My stomach hurt and I need to go to the toilet more its may be some thing I ate or just the IBS playing up. I am getting a pain also when I wee, a bit like cystitis. I feel otherwise pretty good in mind - if not in body. As the day progressed the pain lessened so I did not have to take any extra tablets. By the end of the day the pain levels were back to about 4+ which is where I like them to be. Lower would be nice but like Wietse says little baby steps. So a bad start to the day but a better end. My nightmares have now gone, just the extreme temperature changes to put up with again.


Today I had to go to see my Doctor as I think I have an water infection as I am in more pain than yesterday. Sure enough I have an infection given antibiotics - TRIMETHOPRIM 200mg 2 a day for a week. I wish I would hear from the Hospital so this catheter could be taken out, the longer its in the worse state my bladder is getting in. My Doctors says it will be at least three weeks from the day I went home, not three weeks from the day it was put in as I thought. My foot is going crazy with pain and sensitive as well, its about twice its size I have not bean like this since I was in Hospital.


I got started on the greenhouse plants, pricking them out and generally sorting every thing out was very pleased with what I got done. The only thing is its very tiring. I had a lay down for an hour, after which I felt a lot better.


Today is Physio day. I am going on the bus as I feel a lot stronger, I need to get two buses, I get free bus pass so it does not cost me anything, taxis cost at least ten pounds a round trip. The first bus no problems. The second one did not did not turn up. So I had to get a taxi after all or I would have missed my appointment. I arrived just about on time and brought Wietse up to date with everything that has being going on.

He put in the usual needles and asked how my foot was doing since the 18th when I realised I could move it. I told him it was getting stronger every day. He said, remember little steps.
He went on to massage my neck as it has bean very tight and sore, he really had to work the muscles as they were so stiff causing me a lot of discomfort. He stopped every few minutes to let me have a rest from the pain, when he finally finished I was in a lot more pain and discomfort. My shoulder was swollen again which I knew would last a few more days. I asked him about possible RSD in my bladder, could it that what is causing me the water retention problems he said it could be. I did not ask any more that was enough for now.

I went to get the bus back home, I began to wonder if this one was coming as it was late also. I asked the driver what had happen to the previous one. He said he was running at least three quarters late because of the sheer amount of traffic, but he had managed to catch up a bit and was now only half an hour late.

After getting off the bus I did a bit of shopping. On walking to the bus depot I saw some one that looked like my oldest son Wayne, which was unlikely as he lives in Halifax! As I got closer I realised it was him. Paul had arranged for him to come down for the weekend and surprise me, as last time he came I was very ill in Hospital. I hugged him as much as my shoulder would let me. It was really lovely to see him. He brought me a present - a portable hard drive and a media player so I am able to watch the films that are stored on the computer, down stairs on the television in comfort.

The surprise was just what I needed and was very much appreciated thank you Wayne and Paul.

Well that's all for now a very mixed blog but that's life.
I hope you are all getting some good days.

Love Gill.

Jo 999 - Part Two

...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.
Love Gill.

Jo 999

24th March

I woke up today feeling good. I am cleaning up all down stairs, so long do a bit, then as I sit down, the pain is alright. Sandy has had two walks also so she is happy.

All too soon it was time to meet Jo for Pilates class, I was able to sit in the front as the other member was not here. I usually sit in the back slightly squashed with the Pilates rollers, so it was a treat for me. On the way I had a headache nothing too bad but just annoying - you would think with all the pain killers I take a headache would not be noticeable. The roads since the cold spell of frost and ice have become full of holes and we seemed to hit every one, which made my body ache.

On starting the class I felt very hot and dizzy, I told Jo that I was going out side to cool off. After a while she came out to me I was then shaking with cold so she put me in the car...

...that was my last positive memory of this night.

This is what I was told had happened:

When the classes had finished Jo came back to the car, she had bean checking up on me every now and then but said I was a sleep all the time. She could not wake me up very easily, when I did finally came round, it became very clear to her that things were not right. I had like a panic attack almost like going into shock. She asked if there was a doctor or a nurse in the class, which turned out there was two nurses who checked me over and were concerned as I was not responding as I should. An ambulance was called and I was taken to Hospital.

On a arrival I was examined and the usual tests done, a urine test was not possible as I could not wee. I was told I had water retention. A catheter was put in and I was admitted for observation. They also put me on oxygen as my Sat's were very low. I spent the night in this ward, a very noisy one at that - the constant noise caused me a lot of pain.


I was moved to a long stay ward at 1am on Friday. This ward is so much quieter. I am more aware of my surroundings now and feel a bit better but I still ache all over with tight muscles. I am in bed still with the catheter in and on oxygen at most times.

At 4 pm my body started to go into spasm's full body ones, lifting off the bed ones. Very painful. I was not really given anything as they did not seem to know what to give me as I'm already on morphine I think the Pain Team came to see me. These lasted till 2.30am the next day I eventually was given 2oml OROMORPH every two hours if required, the only thing that works with me. I was wrecked totally exhausted. After all this had finished I had a nose bleed and had a nose bag put on to catch the blood, my blood pressure was very high; how high I don't know, but high enough to cause a bleed.


From hear on things are only a blur I do not remember too much about this week at all.

Around this time I was put on DIAZEPAM this is where things get very hazy. The twilight zone begins now for a while. 10mg 3x a day reduced to 5mg 3x a day a few days later. Also around this time I was given an air mattress as I am very prone to bed sores. This was really a lot better than a normal mattress as it moved with me in like waves very soothing.

April 1st/2nd/3rd

Early hours of the night I noticed a lot of blood in my catheter later in the day this was removed a few days later, but on trying to wee I could not properly only dribbles. I am very week and wobbly two people have to walk with me to the toilet. Later that night I passed out after trying for a wee still not very successful.

The doctors came and took me off the OROMORPH as they said it was making me very confused Paul told them it was the DIAZEPAM but they would not listen. I am told I have a bad water infection put on Antibiotic's. Pain levels are very high but not much help with that.
I am now having injections and have been given knee length socks for any blood clots that might appear they are painful as they go in my stomach. Later that day I was taken out of bed to sit in the chair and I passed out again hitting my head full force on the table put back in bed again, oxygen still on Sat's still low.

Continued in Part Two...

Love Gill.

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