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.

1 comment:

Anonymous said...

glad you like the little media player! nice to see my surprise visit on the blog ;-)

take care x

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