We (Paul and I) set off about mid day on Sunday 27TH July. Sandy my little dog goes next door, to her "Auntie" Cila and "Uncle" Ben's, for her holiday as she is now 14 years old and traveling is a bit much for her. My son Andrew (20) stays at home.

We are heading for Kessingland beach in Suffolk. The journey will take about 3 hours travel time, but we will be stopping a lot more than usual.

The journey was smooth with no hold ups I think every one had set off yesterday, the pain was pretty bad on the way, in my back, shoulders and foot.

The chalet was clean, large and in a quiet area, in fact the whole site was quiet, just what the doctor ordered. We got unpacked had a cup of tea then, I had a lay down, when the pain gets too bad the only way to relax my body is to lay flat.

After a good rest more tea. we had a look round the place the swimming pool was close so was the restaurant much to Paul's delight. We decided to have a meal there, as chip shop was closed [it was hardly ever open - as we later found out] We sat down and ordered we were told a 30-40 minute wait. that was okay.

I put my feet on a chair to get more comfy as was in a bit of pain.
After well over a hour the young man who seemed to be doing everything (he was running round the tables and getting a load of abuse from most people) came over to apologise - a waitress had gone home ill. It would not be too much longer,we said that was fine,we would wait.

Half a hour later he came back to re take the order, as things were not going well I asked if the chef had shot him self, he said not yet,they were under staffed a lot of people left and got refunds. Lucky for us not so many meals to do.
We sat it out, Paul went to get my tabs as was in a lot of pain.
The meal arrived at last, it tasted so good,when we finished we got up to leave. Out side we saw the young man who had bean flying around so much ,he apologized and said come in again and we give you a commentary meal, he was the assistant manger.
We walked back to the chalet not far, but it was very pain full, I laid flat again and let more tabs do there work.


Today I just rested still felt very spaced out and weak from every thing.


Today we are going to Africa Alive

The day was very hot I spent most of the time in my wheelchair,we saw lot of different animals including monkeys, chimps, zebra, giraffes, lions, cheetahs, plus many others.

We all so watched THE ZULU NATION they were dancing and singing they were very good and so funny to watch.

We had dinner saw a bit more then we decided that was enough for today as I was getting very tired and in pain, so we headed back to the chalet, it was very close to us, so a short journey

All in all it was a good day, I even got sun burn on my legs

Back at the chalet I had a lay down as felt a bit rough.


Went into Great Yarmouth to do a bit of shopping it was very busy, spent most of the time in my chair again. Today I felt very tired and down I think it the after affects of all the extra tabs.


After dinner we went to a place called Southwold, a very quite place with a Pier we walked along it and looked out to sea it was very peace full. Under the Pier were lots of jellyfish. We sat and had a cup of tea then headed back to the chalet again. More rest more pain. Took last PROBANTHINE tab today (for sweats)


To day we are going on a boat trip along the Norfolk Broads. The boat went along very slow, we saw yacht racing, some very old boats that had bean there a very long time.

The wild life was very tame the ducks came right up to the boat waiting to be fed some were very fat. The coots were the worse even chasing after the boat for food. There was a black swan quite rare, we were told, all so Egyptian geese with eyes like Cleopatra. That's probably where she got the idea from.

Some of the houses were very expensive to buy, around a million that's if they ever came up for sale, the posts they were built on, were hammered into the ground for 100 ft, because of the marsh land they stood on. George Formby lived there there at one time in a very big house, when he was appearing at Great Yarmouth

He used to live in Lincoln we were told, he bought the house there because his wife did not trust him enough him to stop there after his shows, so every night he had to travel back to Lincoln.

We also saw a ice cream boat but did not have one as was on wrong side of river.

The trip came to an end it was most enjoyable. We had dinner a quick look round then set off back to the chalet again, more rest more tabs. We started packing, for home tomorrow.

Later on that night I stubbed my right foot on a step the pain sheared though my body like electric shocks they lasted quite a while more tabs, a lot later the pain was more bearable.

Lucky my foot was only a bit bruised.


The journey home again was pain full ,but I got a new cushion for my neck which helped a lot, the sweating started on the way home , more PROBANTHINE I think.

We had good weather all week no rain till night time and then one storm late at night & a down pour around 8pm. The holiday was now over but we made the best of a bad time I think.

A week after coming home I got some sort of virus. Thursday night I was all right till about 1. 30am (Friday) then started to feel very sick then I was violently sick so many times I could not stand up.

I woke Paul up by shouting him, eventually, he is a deep sleeper. He helped me up stairs to bed.
The next day I still kept being sick had to ring physio to cancel. I felt very weak, really bad head. I could not even keep water down.

I just rested & dozed all day. By night time I could keep water down if I sipped it.


Very weak today stomach is bloated & sore, sweating a lot,(got more PROBANTHINE)


Feel quite a lot better, but quite weak, PROBANTHINE does work with sweating. Got weighed to day have lost about 8-10lbs in weight since going into hospital. I think I got the virus because of being run down, nobody else in the house got it.

Hopefully I will keep well now, hope you all do too
Bye till next time.


THE UGLY Part 3 20th -24th JULY

As it got lighter the reality came to me, it was more like a geriatric ward.
Most of the patients were either deaf, senile or both. My heart dropped I sobbed,I thought maybe something had happened to me that I did not know about. The patients were very tiring and kept asking the same questions over and over again.

The lady opposite me did not know where she was or if had she eaten, thought I was a nurse, and kept asking which was her bed. She was like that all day apart from when she was asleep.

The lady next to me was very deaf but nice, but could not speak to her as she never heard me. The lady on the other side slept most of the time looked like the granny of THE ADAMS FAMILY, she ate like a animal.

The lady at the end of my row, who I did not see properly, till the last day, seamed normal & was fed up as well.

One lady though Maggie Thatcher was still in power and was very confused.

A German lady was very loud and very possessive of her things but all so deaf but quite nice.

The lady at the end got to me the most, she kept shouting out LET ME DIE I WANT TO DIE most of the time she was awake, I cried because I felt sorry for her, I though she might have a terminal illness but was told she had just given up, there was nothing much wrong with her.

Mon 21ST
The pain began to subside and I was able to move about more, I got out of bed properly for the first time, I sat in a chair by the bed. I hurt so much - from so many spasm's.

The lady opposite me kept asking the same things over and over again. The other lady was moaning about dieing all day long it really got to me. I got by, with help of the radio and my Ipod, I sat there most of the time with my eyes shut.

Tues 22TH

Physio came today and I walked for the first time for nearly 2 weeks one on either side holding me. I was very wobbly, they came back later and I walked again.

Wednesday 23TH

To day I had a bath I was lifted in a hoist in to the bath I did not like it too much, it hurt every wear, but a least I was clean. To day I walked on my own with someone on each side still very wobbly, I could now if I wanted go to toilet with someone by my side. I still felt very weak my body hurt so much.

By now I was feeling very low and tear full, I asked one of the nurses if she would come and talk to me; she said she would later.

As there were a few problems in other parts of the ward, tablets were late so the nurses were a bit stressed.
When my tabs were given to me my light was put on by a male nurse, another came back & told me off for leaving it on as it would up set the others, they had bean asleep hours, that's one thing they did do, was sleep at night thankfully.
I could not turn it off myself as it had bean turned on at the wall and did not work by the buzzer.

I put my Ipod on for the night ,the same nurse came past and said you will not get to sleep like that, I told her I did not sleep much, I had insomnia, off she went again.

Later on I needed some Oxynorm for the pain so I buzzed for the nurse, the male one came he was very nice. He and another came back with it I asked if there was somebody I could talk to; he said no, they were all busy.

Thursday 24TH

In the morning I asked the same nurse from last night if she would take me to the toilet she said soon. She turned her head and said to her colleague she can wait,
I thought what have I done to up set her. In the other ward I was know to some as the quiet one in the corner, I hardly ever bothered them apart from pain relief.
I asked another nurse to take me to the toilet.

The doctors came round and said I could go home today, thank you. I had to take it easy, they thought it was my fibromyalgia, as much as my RSD, flaring up and it would calm down with rest.

I was still upset and decided to talk to a nurse that seamed nice, she sat down but was called away before I could really talk much, promising to come back ,she got busy and looked across and said I will be there soon I am on all day, this lifted me a bit. To give me and her more time to talk I asked her to ring Paul to pick me up me later.

Dinner came and went I still had no appetite. I asked where this nurse was and was told she was not on the ward this afternoon. I said she was coming to talk to me,she just looked at me I said is there any one I can talk to she said we are very busy, I said OK. I felt very let down.

Before I left I went to the toilet and saw the lady who I had not really seen before, I said I was home today. She said tomorrow thank god, she too had not had the best time in that ward. If I had know she was there I would asked to be moved at least I would have had some one to talk to.

Paul came and I got ready to go home I said my goodbyes, and left happy to be going.

I was in that ward for 4 days of hell, a total of 2 weeks 1 day in hospital.
I kept sane if that is the word by listening to radio by day Ipod at night, till I fell asleep.

This track kept coming on the radio it about summed it all up.


When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
When the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse

Lights will guide you home
And ignite your bones
And I will try to fix you

High up above or down below
When you're too in love to let it go
If you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

I am sure if I would have had my tabs when I needed them the pain would have not got out of control, & I would not have to endure this 2 weeks of pain and suffering.
I think I would have bean in a few days at the most. It will probably take weeks to recover from this & we go on holiday in 2 days...we will have to see.

I know the patients in the last ward were not to blame, I had been put in the wrong ward. I am sure I could have been treated better than that, specially moving at 3am,
a letter of complaint has bean sent and they are dealing with it, what that means I am not too sure.

While I was in hospital my tabs went from 14 a day to 37-40 a day. Plus OXYNORM.
I had worked so hard to get them down to the minimum. Some of the tabs I received might not be in the right order but they are all there.
I came home on 33 tabs.

When I was home I needed some with me to help me walk as I was still not too good on my feet all so help up the stairs.
A lot is probably the extra tabs I have bean on and the pain my body has bean through, but it will get better as time goes on.


Went to see him on Friday. He took me off few tabs PARACETAMOL and DIHYDROCODEINE.
at my request. Try to get back as you were, he said, all so I have stopped PROPANTHELINE [for sweating] to see what happens.

He said go on your holiday and try to rest as much as possible and use your wheelchair(!) as much as possible.

I hope people you read this can under stand that RSD is not a thing to upset as it does not like it, those of you with RSD will already know.

Well bye for now, write soon, with holiday week, take care.


THE BAD part 2
9th - 20th July

Wietse came out to get me and asked how I felt, I said a bit light headed & spaced out - he said I looked it. I told him what happened on the bus. I got on to the table and he started to put the needles in as usual, no problems with that, then he started to massage my foot as usual still no problems.

As he carried on we were both talking,asking how I had bean, I said I had a few good days, he said that was a lot better then. I suddenly started to get hot I asked Wietse to sit me back a bit he did, but it did no good. He got the needles out and layed me flat, I think I passed out. When I came round I felt very hot and had real bad head, he put a fan on me and told me to rest.

As I lay there I started to rench and my throat was very tight, Michelle got me a bin/bucket, I was not sick or really felt it, but continued to rench.
Not too sure what happened after this as was I think was out of it much of the time,
some thing about a biscuit, water and a head massage. I started to feel very cold Wietse put my jacket over me and told me to rest.

I think I had a sleep, more renching, still bad head Wietse asked if I wanted to phone Paul I said no I will be all right soon. The next thing I remember was some thing about blue lips and stats low. An ambulance had been called, a oxygen mask was put on me, I had not even objected to the ambulance I did not even know one had bean called.

At hospital I was put in to a cubicle, Paul was there somebody had called him.
I started to rench continuously and my body had gone into spasm's. I could not breath it felt like I had a rolled up sock in my throat it was very tight and dry.
I was on a stats monitor, I kept going blue,this continued for a long time I was in and out of consciousness most of the time. A drip was put in for fluids.
Andrew my son arrived.

I think I was having spasm's of my throat as they were like the ones I have though out my body squeezing then letting go continually. Most of the nurses were very kind, one told me I was hyperventilating, The others told Paul I was not I could not breathe let a lone breathe fast. I was admitted over night for observation.

I was in a lot of pain by now it was about 6-7 pm. I had missed my dinner time tabs, to keep the pain under control. I asked when I would get them was told after a doctor had seen me. The doc came and asked me lot of questions and did some tests.
I asked her about tabs she said as soon as they are written up I explained RSD was a chronic pain condition she did not know any thing about it.[ The tabs were on my bed]

By now it was getting time for my next lot of tabs 10pm ish. I was moved to a short stay ward. I asked again for my tabs and was told as soon as they are written up, by now I was in unbearable pain the spasms were though out my body.

I started gagging again and was put on my side with an oxygen mask on. I layed on my side in lot of pain gagging the pain was off the scale. My drip had stopped working.
I thought here I am layed on my side with a mask on, gagging if I was sick I would choke. I was left like that for a long time.

I buzzed again asking for tabs she said when written up, I had seen the doc hours earlier,it was now 3-4am. She tucked the sheet in and pushed the cupboard near me so I did not fall out bed and told me to stop being silly. Again I was left with the mask on,renching and in unstop able pain very much out of control.

Again I buzzed she asked what did I want, I pleaded for tabs she said. not written up yet, I told her it was a chronic pain condition. She asked which ones do I need the most and got me them. They did little good the pain had gone too far.It was about 24 hours since I had my last lot of tabs. I kept asking them to put me out to give my body time to rest , they said they could not do that. The drip was still not working every body came and said I will get that sorted but no one did.

By now the day staff were on and the docs came round, they did the same tests they did before all so they said they would sort the drip, I asked about pain they said they would get the pain clinic to look at me.
They seamed more bothered about 5 large blisters on my left arm and later took samples for the lab.
All so I asked about a bed cradle to stop the sheet from touching my foot they said it would be sorted.
I got my usual tabs but they did little good the pain was well out of control.
They upped my tabs plus 8 PARACETAMOL and 4 CODEINE a day.

The drip was sorted as it had come apart, when that bag had finished another bag was put up, potassium. When I tryed to drink, it kept coming out my mouth or nose, my throat seamed to be very tight and sore.

Pain team came & saw what I was like and put me on 3 DIAZEPAN and 3 DIHYDROCODEINE a day as well as my others. The pain was like electric shocks shooting through my body, lifting me off the bed with so much pain. They all so got me a bed cradle (to keep the sheets off my foot).

I started eating a bit on Monday 14TH but was not that bothered about food.
The days passed by,the pain continued,I was higher than a kite seeing pretty colours of red,orange and yellow. Every thing seamed to be in slow motion I knew what people said but could not respond most of the time. People came to see me but I could not remember much of it. They said I looked so spaced out, far worse than Amy Winehouse [that's bad].

Pain team came to see me again and put me on OXYNORM when I needed it.
I had bean in hospital 9 days.[Friday 18TH]
Some time over the weekend I think I was taken off DIAZEPAN.

The pain was so bad on the Saturday night that early on Sunday 20th about 1AM I buzzed the nurse she said she would get me some OXYNORM, half a hour later I buzzed again she said soon, I was crying with the pain.

The tabs were in my bed side locker but I could not get to them.
I buzzed again and again pleaded, yes, pleaded, with her, I was in so much pain I wanted to die.

You are in hospital and you have to plead for pain relief, that not right is it?

She said she would get me some OXYNORM.
At 3AM the nurses came I said thank god, but no, they had come to move me to another ward. I cried and cried, what about the pain relief, they said you will get it in your next ward the porter is here.

When I got to the next ward the nurse saw how much pain I was in and gave me it straight away she was very kind and sat with me for awhile, I was so up set.
As I lay there for the rest of the night I looked around it seamed a quiet ward there was a old lady opposite me and every body seamed to be asleep.
By now it was Sunday morning and the day staff were on.



Part 1- THE GOOD - 6Th -8Th July

I have bean having a few good days. Yes, good days; not too many bad spasms, pain levels 4-5, have even bean able to reduce tablets, most days taking 14( and vit c, cod liver oil & gingko biloba) some times with a bit extra, for pain mostly ibuprofen.

Tues 8Th

Went to running club on my bike, went round with the faster runners, on road for a while then, off road round the lakes it was a nice summer night, I had on my new cycle shorts, which make you feel like you have a nappy on, and walk like John Wayne, but saying that I did not feel saddle sore after the ride.

That night I biked around 13-14 miles about 10 miles peddling, the rest electric,

I felt really good, for the first time at the club on my bike, I felt I actually belonged, not just a spare part, it is nice to be part of something that is not RSD treatment related in any way.

When I got home I still felt good, in fact I was buzzing

I still did not sleep any better though.

The next day no more pain than usual.

Physio to day 11.30

Went as all ways to get my first bus,it was early for a change so I got into town, well in time for my next bus about, 15 min, so I leaned against the wall and waited.

When the bus came, I walked towards it and said hello to the driver [its the same one every week with p.c coaches] and felt very light headed so I held on to the bus, driver asked me if I was OK, I said how I felt, he said sit down, then we were off.

After a few Minutes I felt all right again.

On arriving at physio and standing up I felt light headed again but not as bad as before

Driver asked me if I was OK and said see you later, I said good bye, and started to walk to physio.

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