Jan 1st

Well a New Year what will this one bring?
I am back to my normal self which is far away from every one else's normal even before the RSD.

My left hip is not too good, feels like it has slipped out of place again. I must do some more Pilate's.
My mouth is just a bit sore on the upper roof part. The rest about healed. Summer has recovered as well and back to her normal Summer self.

Wayne and Will are going back home today. Wayne is not too well MAN FLU. I hope he feels better soon.

Late night early morning I started to get the bad spasms again I thought they were starting up again like before Christmas. A lot of pain in left side of my neck. Pain ranging from a five to a nine. A lot more than usual of the burning pain as well. Very hot feet and legs.


A sunny and windy day, Catching up with the washing of the sheets from the beds used over Christmas. With three extra here it was more work but so nice to have the family all together for a while. 

Going into town with Lindsay and family to get shoes for the children. Jamie-Lee has gone up a size and half. She got pretty pink ones half price too.  Jay-Jay got some very smart boots also half price this is going too well. Tommy-Lee had no luck, he did not see anything that was in his size there. Another shop and Tommy-Lee got sorted out a pair a trainers and football boots yes you guessed it half price again. Jay-Jay also got trainers the ones he wanted before Christmas. Everyone happy

I got myself some gel heel pads as I put a lot of pressure on my right heel because of the way I walk.
Well everyone sorted time to head home. Once home and showing Grandad their footwear we realised that Tommy-Lee had bean given the wrong boots, this was a bit much for him and a few tears were shed. Lindsay rang the shop and they are going to swap them over tomorrow when I go in with Paul. A long painful tiring day but so much worth it just to see them so happy. Jamie-Lee kept looking at her shoes and saying shoes pretty. Jay-Jay was so happy as he got the ones he wanted and even Tommy-Lee cheered up.


Disturbed night lots of spasms hot burning pain to feet and legs. Back is tight and jumping. Heel pads are good they take away a lot of the pressure and some of the pain.

In town with Paul got Tommy-Lees boots and the rest of the things we needed. Another tiring day I hurt a lot. Home for a rest but taking Summer for her walk first. 


Sorted out the toy cupboard  because it was such a mess, while I was in hospital it did not get tidied up, stuff was just thrown in. Tommy-Lee said there was an explosion in there so that's why it looked like it did. Strange the rest of the house was not touched!! Also did the bedrooms so upstairs is all done and tidy we have four bedrooms in all. So quite a big house to clean and keep tidy. Paul started on the downstairs.


Cooking dinner for Paul's Mum and Dad. Roast pork with all the trimmings and Christmas pudding for those who wanted it. Everything cooked well. A good day.

I ache a lot but I will rest now and hopefully that will  help.


I feel a bit strange-  Far away like I have slipped out my body, weird. The walk with Summer did not help either. 

Lindsay phoned and said come and meet us we are coming back from bowling. So Summer and I went to meet them just under a mile away. Jay-Jay spotted me and ran to meet me. Tommy-Lee was shouting Nan and Jamie-Lee just went crazy.
We walked along the river going back, a lot further but nicer for Summer and the boys so they could run around and let off steam. Oh to be like that again.

Lindsay said I did not look too good, I said I have had better days. They came back here for a while.
I was trying to do stuff on the computer with the boys but found it very hard to think. After a while my words became slurred I found it very difficult to help them.

 I am getting electric shocks to all parts of my body.

 Off they went home. I took Summer for her afternoon walk and felt like I was not even touching the ground and floating above it. Paul even came too.

Teatime my hands lost feeling and I found it difficult to hold things I kept dropping my food, fajitas for tea. Sick as well, Pain everywhere spasms as well. Paul thought I had the bug that was going round but it did not feel like that, too much RSD things going on. I felt like I did before Christmas. In and out of consciousness all night I felt very strange limp arms and legs hardly able to walk.I felt totally spaced out but I had taken nothing extra only a bit of ORAMORPH about twenty mls throughout the day, four teaspoons. I have taken loads more than that with no side affects.

I don't know why but I insisted on going to bed how I got up is another mystery to me. Paul said it took a while. This was early morning Paul had stopped up as well sleeping on his reclining  chair in the front room because of back pain. I started spasming almost straight away.  Stronger ones were coming as well. I was throwing myself about drifting off and loosing consciousness. Paul said this went on for awhile.  He asked me if it was time for an ambulance I reluctantly said yes. He then dialed 999, an ambulance came very fast. I have not got much memory of this though. I was taken off to hospital. 


I was kept in hospital where I continued to fit/spasm till teatime. Not as violent as last time but bad enough to have another padded bed. Blood test and usual things done. Doctors and neurologists came to see me. I am to have some tests done.


Catheter put in as I could not wee. Still fits and spasms but I think they are calming down. In a lot of pain. MORPHINE and CODEINE given helped a bit. Late night pain back, hard to tell what does not hurt as so much pain. More MORPHINE. Fits/spasms seemed to have slowed a bit. 


Moved to Navenby Ward early hours of the morning. The porter was very gentle moving me as I was in so much pain. This was the Ward I was in at Christmas but a different part. One lady waved to me while she was getting up to use the toilet. Seems a nice ward.

I was awakened by some one shouting and asking me if I wanted breakfast and something about an appointment for a bladder scan. I think Paul and Lindsay were there. I felt bad not right at all. 

Things went from bad to worse I started fitting, spasming again more violent this time. Pain and more PAIN.
From here on I have not much memory of what was happening to me.
I know I saw monsters that loomed towards me and everywhere was red. Voices so far away I was very scared.

What I have written next is mostly from notes that Lindsay and Paul had left me to put in my blog.
I have very little reality of the time between the 10th to the 15th. Night and day just merged into one.

I was given an injection of LORAZEPAM at 10-10am. these injections or tablets were to last the next few days. (Four days at 3 or 4 injections or tablets and three days of one tablet or injection). This did little to stop them, they were very violent and I was throwing myself around.  Another injection given 4-20pm still spasms and fits. They were not getting under control. Also MORPHINE was given to me.

Night time after Paul had gone home, Lindsay was here with her friend Tracy. I stopped breathing and had no pulse. CRASH TEAM called. My pulse came back and I started breathing again on my own. Lindsay and Tracy did not know this yet as they were taken out the room.

I think at this time Lindsay called Paul who got up here straight away.
I knew nothing about this until 18th Jan.


 I was moved to a side room for my sake and the other patients as my bed was squeaking and I was shouting a lot. I thought I had bean in my side room from the afternoon of the 10th. I did not find this out until I went home and started asking questions to fill in the gaps, and there was a lot of gaps to fill.  


 Not sure what is real and what is fake any more. Lots of pain fits/spasms still continue to come and go, not sure if it is day or night.


Slightly more with it but even then far from right. Out of my window I can see this for the first time.
Telly Tubby Land. E- OH

More fits and spasms. I am going for an EEG today to see what is going on in my brain. Very noisy and bright away from my room.

 Not much difference may be slightly better but still hard to separate the real and non real world.

Visitors, Nerida, a neighbour. Michelle and Pete, Paul's sister and brother in law at night time. Lindsay said I would ask what was real as the two merged into one. I remember seeing the lady who smiled at me when I first came into the ward, standing at my door with another lady and not knowing if this was real or not.

A card from little Ben (6), and Emmie (19mths)  Nerida son and daughter.


Neurologist came and said the fits were called PSEUDO NON EPILEPTIC SEIZURE SYNDROME. I am still in bed and I have not even really sat up  properly yet. A bit more with it today. My catheter was very painful so it was taken out. Hopefully I will be able to wee ok. A lot of blood was in it. I have bean told its TRAUMA  to my bladder and possibly my kidneys, from throwing myself about while having the fits/spasms. This hopefully will settle with time. I have an irritable bladder anyway so this will not help at all.
I have pain everywhere even though my bed is padded my body has had some hard knocks, bruises and scrapes one bad one to my RSD foot covered with a dressing.


Tried so hard to wee but too painful so the catheter had to go back in late evening. A nurse who I saw later said how much better I looked. I have no recollection of her or in fact most of the ones I saw over the next few days. They had bean with me from the first day of Navenby Ward. They all said how different I looked.
One said I must have good stomach muscles to cope with the last few days. Also I scared my daughter and friend Tracy, plus Paul nearly to death. Also I think most of my family as well.
That's the thing when you are ill you are not aware of what is going on. Your family and friends suffer more than you.

The physio came and said I can now sit up but to be careful as I have bean laid down a long time. I will get head rush from my blood pressure adjusting to being up right again. I sort of brushed this off but she was so right. Bad head pain and very dizzy. Pinging in left ear. I sat up for a while then laid down. One small step at a time.

 My padded bed which was not removed until the day before I went home. The bed squeaked a lot so they knew when I was fitting.

A psychiatrist came to see me to talk about what had bean going on. Well in fact there was two, one in the morning a very nice lady I got on with her very well. Another one in the afternoon a man not so good with him at all. Also the lady from earlier. He asked where the proof of RSD was-- I said HERE ME. I had a lot of MORPHINE that day and I told him to speak direct, not in circles. He did not listen much and things did not go too well to start with. We parted friends. I am to see a cytologist tomorrow. A lot has happened to me in the last ten years. This leaves scars.
While having tea, my throat decided to go into a spasm and trapped the bit of food that was in my mouth. I was choking, I put my fingers down my throat to dislodge any food this just made me cough up blood. I tried to find my buzzer to call for help but could not. Finally I did and a nurse came and got a doctor straight away. A lot of blood came up then and more choking then I was alright. The Doctor looked in my throat and was pleased it had stopped spamming and bleeding, so was I. I continued to cough for a while bring up bits of food a piece of bean about an inch long came up as well causing more blood. 
A spasm with me can happen anywhere in the body even the throat.

Sore eyes, sore throat and a bad head. I was told not to eat or drink anything for the next two hours as not to start it off again. No tablets, but I could have an injection for the pain if I wanted. I declined the pain was not too bad.
Since being here I have had injections in my bum  LORAZEPAM to stop the fits, my arm B12, and stomach to stop blood clots every night I was there. Plus drips and blood taking. A lot.

John my friend came to visit as well, not able to talk  much though but good to see him.  My hairdresser Helen and Chris her husband later. So nice to see them all.

Things settled down later. Throat very sore still coughing a bit raspy voice.

Paul, Lindsay and Tracy have bean everyday, even though a lot of the time I did not know anyone was there at all.


A lot of bladder pain at 3am given OROMORPTH settled a bit but still very sore. I am quite dizzy my head hurts as well. When the physio said this would happen I thought it would be mild.
I am frustrated as I still have to have the padded bed. The nurses say they are just being careful as the fits may not have stopped yet. Throat is still very sore and voice very raspy still. I have no appetite and am eating very little. I want to get up and move and go home.

One of the MAD Housekeepers was having a joke with me showing me the shower and bathroom in my room. Saying oh look nice shower shame you can't use it. I laughed so funny. I will very soon.

Small fit after dinner but I was alright, Paul said I started shaking and got the nurse, I came round to him asking if I was back. For a minute I didn't know what he meant. I soon recovered after all it was a big day yesterday.

I have bean told about my crash team moment. The crash bell went later in the night and I began to shake and cry- flash back I think even though I can't remember it.

My friend Bev and Russ came to see me so good to see them again. They brought sweets and Russ sat and ate some. He said he was going to put his feet on my catheter bag to keep them warm. Just the same Russ.

Night time my brother David and Bev my sister in law came to see me. That was nice of them they brought sweets as well.


Three big achievements I washed myself, half a dish of bran flakes for breakfast and I went to toilet.
I felt exhausted, the feeling I used to get after a race, tired but happy. This made me sad then thinking about running.

The lady who I made the teddy for before Christmas, is still in hospital and loves her teddy. Paul and Lindsay went to see her. The nurse said she cuddles it and its with her at all times. That makes me very happy.

Mid afternoon the physio came. One of the male nurses arranged this early for me as the physio said it would be Monday. Thank you very much mate. They said I could get out of bed. YES escape plan. I also got weighed 8 stone 2 pounds. (52.4kg). Quite a bit lost about ten plus pounds in total some from before Christmas..

I walked the few steps about three to the chair with help and sat down. Very shaky I gripped the chair very hard. Light headed and sweating heart pounding a lot but I had left the bed. Three cheers for me.  I was sat in the chair when Lindsay and Tracy plus Jamie-Lee came to visit. They were happy to see me out of bed. Jamie-Lee said hi Nana. She laid on the bed and said some thing that sounded like night,night.

I sat for about an hour and a half, maybe a bit too long. I was helped back into the bed after Lindsay and family had left, by the nurse that had called the physio and I thanked him. Very tired. One side of the padding was left off but the sides were still put up.


Not much sleep I think my mind was racing about walking today with the physios. I think I can do it.
I walked with one physio, a walking frame and did quite well very shaky and right foot did not help as it went into a spasm. I am safe to go home very soon. Just need to do the stairs tomorrow. I think I will be fine as you have something to hold on to.

I am told the catheter will come home with me to give my bladder time to rest from all the trauma it has had being bashed about a lot. One of the nurses gave it a name PAIN UP THE BUM not quite appropriate but it will do. I used the bathroom today, I was so pleased.
All the time I have bean in hospital over the years I never had my own private room with en suite and when I am nearly going home I can use the bathroom for the first time, and I never did get to use the shower.

Lindsay bought Jay-Jay and Tommy-Lee up to see me, that was really nice. I have not seen them for ages, since the 6th January. Jay-Jay asked about the catheter I told him what it was. He said, I wished I had not asked. He laid on my bed Tommy-Lee on the chair. He said I should have got TV but I'd sooner listen to the music.

Not so good late night, too much thinking, going over what everyone had said over the last few days, it all became too much for me and I sobbed for about four hours on and off. A nurse talked to me for a while. Thank you very much..
The stress and pain of having a chronic pain condition is bad enough but when everything goes wrong its very hard to cope.

The song by the Beatles Eleanor Rigby- words sums it all up. Face in a jar by the door etc
I did not really sleep.


Break out day?

Slept for about two hours very excited.
I have walked to the bathroom with the frame and got washed and changed. This felt very good.
Physio came and I did the stairs, safe to GO HOME.
The cytologist came back to see me and we talked about going home and told me to look after myself and not everyone else.

About 7-45pm ish I left the hospital with Paul to go home. Complete with walking frame and catheter (Pain up the bum).
I am looking forward to seeing Summer.

I would like to say a VERY BIG THANK YOU to all the Nurses and House Keepers especially the mad one. Also the Doctors and managers for the kindness and support I was given. Also the care when I was very ill. I felt like I was very special and lucky to have bean in my own room.
I know it was done because I was so ill and also because I was quite noisy shouting out when I was very scared. Also the squeaky bed, at least they knew when I was having my seizures. This did not bother the other patients then as the room was away from the main wards. Also I would like to thank everyone you came to see me. Especially Paul, Lindsay and Tracy.

On arriving home Summer went crazy ten big high fives even before I left the car and another twenty at least inside. Lots of kisses as well. She sat with me the rest of the night. I have missed her a lot.

My baby.

Paul's account.

It’s Tuesday 7th January and because Gill hasn’t been well lately. I decided to go to bed at the same time as her at about 2-00am. At 3-00am the full body spasms started with her throwing herself including her arms just like an epileptic fit. So as not to hurt herself I decided to try and hold her down on the bed, bearing in mind that I am nearly twice her weight I found this nearly impossible, for a little one she showed signs of real strength. The spasms/fits went from one to another to another with Gill unable to control what she was doing. Gill and I have this agreement that we both have to agree before I can dial 999 for an ambulance. At about 3-30am we made the decision and I dialled 999, within a short period of time 2 ambulance men arrived and very quickly decided to transport her to hospital. I gathered up her medication and a prescription form along with an RSD printout and a print of her medical conditions. Arriving at A and E at the same time as the ambulance we were shown straight into a cubicle. Nurses took readings and a Doctor examined her trying to make her as comfortable as they could but with the spasms/fits continuing then this was an endless task. It was decided to give her IV painkillers, fitting the cannula was not the easiest of jobs for the Doctor because of the spasms, and the spasms seemed to ease off and by 5-30am they were wheeling her to MEAU, this seemed to start the spasms off again.

On reaching MEAU and with the nursing staff witnessing the spasms they quickly put bed guards up. One of the nurses tried very hard, phoning nearly every ward in the Hospital, to obtain cushions and pillows so they could be fastened to the bed head and bed guards, 6 pillows and 3 blankets were used for this, in the end she had a total of 10 pillows. The spasms continued. Towards teatime I decided to go home to look after our westie Summer and to get some sleep. Daily I would go up to see Gill arriving between 9-30am and 10-00am, joined most of the time by Lindsay, who will give her account, taking her home at lunchtime, grabbing a bite to eat then back up the Hospital until between 4-30pm and 5-00pm.

Gill was transferred to Navenby Ward at about 1-45am on Friday 10th and to be honest she couldn't have gone to a better Ward, as some of the nursing staff had nursed Gill before so they knew her and were all very helpful and friendly and this includes the housekeepers. But on the down side the spasms seemed to get a lot worse and she also started to hallucinate quite badly. How often did the spasms occur, well they varied from hour to hour and day to day but I would say on average the spasms lasted between 15 seconds and 2 minutes, at times she could have 5 episodes in 6 minutes  and roughly 40 plus per day. 

I did morning and afternoon visits daily giving me the evening to rest and relax a bit and look after Summer and catch up on the household jobs.

Then I received a phone call from Lindsay, a call which you never ever want to receive. It started with Lindsay crying, Dad come up quickly they've got the crash cart to mum, she stopped breathing and they could not get a pulse and Tracy and I have been taken away from her bedside, there’s loads of Doctors and Nurses working on her and they've put pads on her chest for the defibrillator.
I can’t remember the journey to the Hospital too well because of what was going through my mind; mainly would Gill be alive when I get to her, with tears rolling down my cheeks and I have shed a swimming pool full, these last few weeks I think this was the most frightening journey of my life. 

It was around 8.30 pm when I got up there, was the love of my life alive ...YES.... thank God, I think she was chatting to Lindsay and Tracy. Relief. With Lindsay and Tracy heading home I decided to stay, exchanging text messages through out the evening, with having trouble settling the nursing staff advised me to go home and at midnight I gave in to there suggestions and they stressed that if there were any problems they would contact me straight away. With no phone call by 3-30am I decided to go to bed setting the alarm so I could be up at the Hospital at my usual time. I woke thinking thank god no phone call.
The Spasms continued then about lunchtime on I think it was Saturday 18th the spasms stopped with a flutter of the leg muscles in the afternoon, had they started again, NO.

At about 8-15am on Saturday 18th I answered a phone call, hello this is Staff Nurse ***** on Navenby Ward. I thought oh no not again and in about 3 seconds 1 million thoughts went through my mind. The Nurse said there’s nothing to worry about, again relief, Gill wants to know if you’ll bring her camera in as she wants to take a photo of “Tele Tubby Land” outside her bedroom window. The mad lady (nutty nanny) is on the mend. She was out of bed for a short period on Sunday evening. Then up nearly all day on Monday with no spasms. The physio’s arrived on the Tuesday to see if she could walk a bit and do some stairs, and if so, it was home for her. I know Gill’s determination; the stairs would definitely not defeat her so it was homeward bound for her after teatime as we had previously decided. 

Lindsay's and Tracy's story

Dads account of the hospital stay is a pretty good one so I wont repeat too much,  the night things took a turn for the worse, the spasms seemed quite violent mainly going into the chest and throat area.  During one bad spasm as it went into her chest, she stopped breathing going a grey in colour, I slapped her several times very hard round the face, shouting, mum, mum, but no response,  Tracy pulled the emergency cord on the wall and the room filled with doctors and a crash cart.  Things suddenly became very scary, the doctors fussed round mum and started to charge the shocker machine, at this point we were asked to leave the room.  Tracy and I were obviously very upset, we went out and waited in the main corridor to compose ourselves as once mum came around she wouldn't see how upset we were and we didn't want to worry her as to how bad this one had been, the doctor met us in the corridor and my first thought was 'oh no please don't let it be bad news'. Thankfully it wasn't and the doctor proceeded to tell us that this was the way mums body was dealing with the pain.

Next is video of one of my milder seizures. This comes with a caution as may upset some people. I thought people would want to see this as its part of my RSD life.


Not so good I hurt everywhere, bladder very painful. I think all the bits I bashed about are now hurting because I am moving about now. Temperature all over the place hot cold hot. Legs are like ice as are my feet. Resting and not doing much. Using the frame to walk, very wobbly without it, quite dizzy as well at times.


Had a lovely surprise gift, I opened it and a Get Well Balloon floated out making me jump and scaring Summer who barked and grumbled at it. This was a gift from Nicola and Stephanie my physios. What a lovely thought. Thank you both very much. A teddy for me after all the ones I have made. This even had a hat like mine.  PRICELESS

 My hat. Dippy hat as I call it.
 Got for cross country 11 years ago to keep me warm while awaiting my turn to run, as ladies were mostly last to race.

Stomach a bit upset. I got weighed 8 stone 1 pound. I have lost quite a bit of weight in the twice I have bean in hospital. About ten or eleven pounds.


Paul bought me some very pretty flowers. Thank you Paul.

 I had a visitor my friend Debbie who walked Summer when I was ill the first time, she brought me a plant and a card from her and Snitter the dog. Thank you very much.


I am still getting a lot of blood in my catheter also pain before hand. The  pain is like cystitis  I wish it would settle down.


Getting stronger not using the frame as much. Lindsay here with family its bean so long since they were here last. The day before I went into hospital.

Little Jamie-Lee bashed her head on a chair a very big lump came up. Jay-Jay and Tommy-Lee are a bit off it, quite for them. Later after dinner Lindsay put Jamie-Lee in her pushchair for a sleep in the front room watching television Mr Tumble her favourite she actually sits still when he's on. Jay-Jay came down and said wheres Jamie? and before Lindsay or I could answer, a loud Jamie voice shouted IN HERE. Jay-Jay went to join her. Later Tommy came down and joined them. They all looked like they could go to sleep, Jamie-Lee did for a short time. Her bump had gone down a bit as well and she was a lot happier.


I am dressed for the first time since 6th of January my trousers hang off me. Blood in catheter first off. Rang Lindsay, Jamie-Lee is fine, head bump a lot less.
Paul's Mum and Dad came to see us. They asked me how I was.
Not using the frame as much and able to walk mostly on my own.


 Spot the Westie.

 A lot of spasms in my legs later at night some quite strong. I thought here we go again but it settled down again. I think because my legs are always cold that does not help. Catheter clear most of day.


Seeing Dr Mehta today. He looked at me and said you have lost weight. We talked about the hospital stay. I asked him if he could take out the catheter but he said no as I still under the Hospital. If things did not go well and I had to have another one put in this would then stop for a lot longer, like a month. I tried. He has prescribed high calorie build up drinks two or three a day to get my weight back up.


Physio went well - eight needles in legs two in hands one in forehead, a calming one. We talked about the last few weeks. Nicola knows quite a bit about the  PSEUDO-  non epileptic seizure syndrome. Nice to talk to someone who does. A good gentle session.

I was ice cold later and could not get warm. Did a bit of knitting, Jamie-Lee's little cardigan that I started before Christmas and did not get finished in time. The high calorie drinks could be affecting my stomach, going a lot.


I escaped outside for a walk with Paul and Summer, this felt so good as you all know I enjoy my walks. Very cold though. Saw a friend and her dog. She said it was nice to see me out and about again. Pain in my neck shooting down to my back and head. This had gone away for a week but now back with vengeance. I think all the seizure activity moved something for the better at least for a while anyway.

I have now finished off Jamie-Lees cardigan quite pleased with it as well. She can have it on Saturday when they come.They did not come this week as every one ill. Get better soon every one.


I think things are picking up, my bladder's behaving better. Still bad stomach. I feel very week and at times dizzy and a bit wobbly but that will improve with time.

A bit of snow first of the winter - nice - I like snow so does Summer.
From teatime a lot of bladder pain and of course, blood as usual, when I get the sharp pain blood always follows. Took ORAMORPH. I will be so pleased when this comes to an end and is removed.
Wednesday can not come too soon for me.

As you can see not the best start to the New Year.

I think I have worked out how RSD builds up and destroys me when I am at my lowest time. Think of Transformers- how they combine to become a giant one. I think that's what happens with RSD, first a leg becomes strong then another, arms, body, then head. Then it becomes powerful and very difficult to fight off. This monster will fight back at everything that is thrown at it and does not like to loose. Even when under control it will still try to win. That is my view any way.

Hope you all had a good New Year, for me things can only get better. Love Gill.

I am looking after my Mum because I love her, and she loves me.

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