1st December

Sharp frost to begin the day and new month. I took these pictures, the trees look so lovely this time of the year I think. The sun was very warm so a lot of the frost had gone. Good walk with Summer on the common she likes the cold weather better than the hot. Good job we get more cold here.

Two views of the river.


Just about finished all the Teds so very soon they will be going to their new homes. All will be revealed tomorrow.
Quite a lot of pain in most places a gnawing type that gets to me. Sensitive everywhere, a few extra tablets IBRUES and OROMORPH. While making the teds I tore my finger on a pin. This caused  my body to go into melt down mode. I had a bath this helped a bit.


Teds all done and bagged up thirteen in all. They are going to all the physios that have helped me in the past year. Just a thank you gift.
 As without them I would be in a worse state than I am now. Also one each for the Tutors as with out them they would be lost some of the time. Third years now so more confident.

 All the Teds for physio.

Since September I have made twenty six teds.


Pilates- This was not one of my better sessions. Spasms everywhere starting in one place and spreading to another. One started in my foot and ended in my shoulder. Pain as well.
Back home for a while then physio. I took OROMORPH.

 Stephanie Ted, she loved it so much she did not want to put it down.

 I got a present as well from one of the physios.

 Physio was fourteen needles in my legs and three in my wrists. Just about all of them hurt. A heart to heart as well, this made me feel a little better. Going home very shaky my legs felt like they were on ice not firm ground.
A big nose bleed about nine pm. I just stood up and it started to drip then it poured. I did not make it to the bathroom, so sat on the kitchen floor with a  load of kitchen roll.
Nicola is handing out the rest of the teds for me today. Thank you Nicola.


I ache today but Wednesday physio was a big session in more ways than one.
Cleaning up in the morning. Lindsay came back with Paul after shopping. They left Jamie-Lee in the car while the shopping was brought in. She did not like it and kept shouting ME ME all the time. She is very funny little girl.

Shopping in the afternoon. Lincoln was plunged into a blackout no lights or electric at all.  I was half way down Marks and Spencer's steps. Some shops closed some had back up generators. The lights flickered then all black. I got most of what I wanted. By the time I was heading home the lights were back on. Some people's were off a lot longer. We were told there was a problem at the main grid.

Lincoln is a terrible place to get round by car, it can take a long time to get through the city centre because the rail line run straight through it. Trains come through about every five to ten minutes in peak time. Goods trains as well lots of trucks. So its easier to walk instead of spending half an hour plus on a bus stuck at the railway crossings. The traffic builds up so nothing moves anywhere very fast.

Still a lot more pain than I would like, more tablets. Early hours my leg went the same as it did before (26th Nov) when I hit my foot on the door frame. Another nose bleed.


Not really any sleep, bed about 6am up at 8am. I don't really feel tired though. Good job because Lindsay and family are here today. Andrew reminded me that MORPHINE can cause nose bleeds. So perhaps its that. Another nose bleed late night again, that's three big ones in as many days.

Marzipan all the cakes four in all.


A nice dinner out today with Paul.

 More Teds for presents. 

One of the cakes is for a present which I need to take soon, so I decided to ice them all. All done now.
My ankles are swollen but not painful. That makes a change.


Awake early, out for the day at Beeston near Nottingham to see my friend Bev. We are exchanging presents. Having to finish off a tea cosy there as I didn't know where the holes wanted to be for the handle and spout.
Not a bad journey there but it feels like my nerves are having a party. Bev took me to a place called Attenborough - --  a nature reserve park very nice but very cold. We saw squirrels as well, they seemed very tame too.


We had some soup and a roll all home made very good too. The cafe is designed so you can still see all the wildlife. I was hurting a lot by now so more tablets.


Pilates not good. More pain and spasms.   Quick dinner then off to physio hopefully they will help.
Fourteen in my legs six in hands. Another big session. Feeling not too good, I decided to have a hot drink at the Cafe. I got there about three thirty and sort of passed out. The next thing I knew it was gone five o clock. When I was aware of my surrounding about an hour later. I was told what happened, I had bean out for about an hour and a half. They could not bring me round for any length of time. At first they thought I was a sleep, after all it is student land. They were considering an ambulance, they said I kept saying no. I could not stand, pain everywhere. They phoned Lindsay my daughter and Tracy, her friend and they came to pick me up. I could not walk and felt very bad. A girl called Loren and her friend helped me a lot. Thank you very much. Hopefully we can meet up so I can thank them better.

Once home I did not feel much better.  Jay-Jay looked after me till they went home. I feel very strange and a lot of pain.

Jay-Jays Story, Grandson age nine.

We arrived at Nans, I shouted  Nan, Nan are you home. Grandad said she's gone to town she will be back in half an hour. Later Nans phone rang but it was not Nan it was this woman called Lauren. Telling my Mum hi its Loren your Mums here with us, would you like to come and pick her up as she is not well. Mum replied yes.
I looked after Nan for the rest of the night and stroked her head. she looked a bit strange more than usual. I was quite worried about her.


Still feeling crap I did not bother to get dressed, so unlike me. Spasms and pain and shaking most of the day. Could it be a virus?
Paul went to pick the grandchildren up from school. When he got home he found me collapsed on my chair half hanging off.

Paul takes up the story from here. 

As time went on things got worse more violent spasms started. Fit like ones. Gill was in and out of consciousness. I dialled 999, within minutes a Paramedic came, (I have a vague memory of this).  An ambulance was needed. They gave her GAS and AIR that helped to relax the spasms but as soon as she stopped breathing it the spasms got more violent. Throwing herself around. Quite frightening. Off to the hospital, no choice this time.

Once there not sure what went on in and out consciousness all the time.

My daughter Lindsay arrived. Her story--

I arrived at A and E and had to wait twenty minutes to see Mum as she was having bloods taken.
Saw Mum at 7-00 pm. Mum was in and out of consciousness. 7-53pm urine test came back clear. 8-30 -- bloods ok. Now awaiting on infection and inflammation bloods to come back. Pain and spasms still coming in waves managing to control them on gas and air. 10pm Mum becomes unconscious till 12-08.-- during this time they put in a cannula and saline drip. Doctors tried for about 20 minutes to awake Mum. Banging on her chest pinching her ear and shouting at her, all to no response.

Friday 13th

12-10. Mum awake for 2 minutes, sore neck from laying funny. no spasms or extra pain.
12-51-- being admitted to MEAU awaiting a bed.

01-43 -- Full body spasms started immense pain, whole body fitting and spasming throwing her self all over the bed. About 2-30am-- the spasms got terribly worse the nurse shouted for some help and about 15 Doctors came rushing in the room and lined up both sides of her and held her down. This continued for about 2 hours during this time Mum was severely hallucinating and was in serious pain. Gas and Air seemed to help. Whilst Mum was spasming she was banging her head and throwing her whole body around like she was the exorcist. It was pretty scary.

At about 5am-- Mum was given a MORPHINE injection and some DIAZEPAM. Mum got transferred to the MEAU ward. The staff were lovely and stroked Mum to calm her, I left about 5-30am she seemed more settled.
 Thank you Lindsay for looking after me I don't think it was an easy thing to do and at times terrifying.

 I think this is when I got the padded bed.  


This day was very much like the 13th a day I do not remember much about.


I feel a bit more like me but far from right. I hurt everywhere I have bitten my tongue and mouth and lips are very sore and bruised. Cuts and bruises everywhere.

I do not remember the last three days very much at all. Just the fit like spasms. I have a padded bed, as well to stop me from throwing myself about and causing more damage to my body. Everywhere hurts, increased tablets as well. Lindsay told me I have had three bags of fluid for dehydration. I was told by the Doctor or nurse, all my veins had collapsed and they could not get a line in. I have loads of marks where they tried.


I have bean moved to Navenby Ward now. Still a lot of pain I feel like my ribs are broke they hurt a lot, moving and coughing are the worst, but just breathing hurts. Still having spasms but not as violent now. I am covered in bruises and cuts. I bit my tongue a few times, also my mouth inside and lips have chunks out of them. I think if you imagine falling off a building or being hit by a car that's just about how I feel.
The nurse gave me a shower that was nice she said I had a lot of cuts and bumps in my head.
I tried a bit of dinner but the stew was horrible and made me wrench and feel very sick not good with sore ribs.

The Doctor came to see me and was pleased how I was doing he said physio was coming to get me walking again.
Physio came and I had a very wobbly walk legs going into spasms very painful.


Pretty much the same as yesterday crap night pain and bad head pains. Another bad nose bleed it poured. the nurse took my blood pressure and it was high. 179/107. Later, when taken it went down to 145/104. This is still high for me usually its 140/80 and does not vary much only when the RSD strikes.  The nurse said it was a lot higher a few days ago.

Physio came back and I walked a bit safer and less spasms I tried the stairs but my legs just buckled under me. I was so disappointed because unless I can do the stairs I cant go home as I would be unsafe.  Another nose bleed but not as bad as before. My mouth is very sore with chunks out my lips. Hardly able to eat.


Better night I feel rough but anyone would after what I have bean through. A lot of back pain when I move, bean sat still too long. Loads of ORMORPTH and BECLOFEN to help spasms and pain.
The doctor is pleased with my progress, and if I can do the stairs and walk a bit better I can go home. He thinks what happened was my body just shutting down and the RSD playing up big time. Not proper epileptic fits but RSD type ones. I am to take it very easy as over doing things could bring them straight back again. I could quite easily have another attack.

A lady in my ward is recovering from an infection that made her go very strange not knowing who she was and trying to get away. She is very much alone and has very few visitors. I got Lindsay to bring in a Ted I had made, she just sat looking and stroking it-a very emotional moment.

Physio's are back, I am determined to do the stairs so I can go home, I have bean trying to keep calm.

Success-- stairs cracked I can go home after dinner. I am so pleased just six days this time. Lindsay did not agree with the treatment neither did I. I just wanted everything to stop hurting.   (OROMORPTH and increased BECLOFEN- plus more pain tablets half the time I did not know what I was taking). I think they could have helped me more, as they did in A and E. As I was just left to get on with the spasms until my body helped it self. Three days of hell and pain. At one point I was given DIAZEPAM again. I am in a lot of PAIN but that will go with time. I have battered my body to the limit.
The lady I gave the Ted to has improved and knows where she is and is talking sense now. I am so pleased. she thanked me so many times for the Ted. I told her she will never be alone now she has him. She did not know what to call him. Said goodbye to every one else and left a tin of sweets for the ward.

HOME WARD BOUND. Quick before they change there minds.


I feel quite good considering what I have  bean through. I am moving around a bit slow and painful. My mouth is a mess, big swollen lips and very sore inside. No appetite very painful to eat anyway. I have lost weight, about six plus pounds. Well at least I have a head start now to gain a bit more weight over Christmas.  Another nose bleed later.


Fair night- woke to ice cold legs and feet. I am lucky they managed to get me a physio appointment not Nicola or Stephanie but one I have seen before plus one other. She thanked me for the Ted and gave me a decorated cake that her son had helped her do.

   Everyone is so nice here.

Treatment was six needles in my legs and two in arms nothing too much. She took my blood pressure 150/76. She has advised to have it checked at my Doctors. I am seeing him later. I felt better after the treatment more relaxed.

Dr thinks I am alright and my blood pressure is a little raised but what I have gone through is to be expected. I am to rest and carry on as I normally do. He said I will fight back because that's what I do. I need to slow down a bit but the RSD will not let me relax or switch off.
I hope I will be able to cope with all the Christmas stuff.

Lindsay was going out tonight but little Jamie-Lee is ill, very sick, a bug I think. Poor little thing.


Mouth is very sore more swollen looks like I have bean in a fight. Cold sores as well. Very difficult to eat and clean my teeth, just using mouth wash. Pounding head ache. Hurt everywhere but spasms are just about normal RSD ones now.
Wrapping presents and a bit of knitting.

Went into town with Paul to get the rest of presents. Half the time I was high on MORPHINE. Just wandering along not even sure what was going on. Somehow we got most of what we wanted.
Very tired and a fair bit of pain.


Much the same, cuts healing inside my mouth. Lips very sore bleeding at times as well. A lot of these are where I bit them when having the fits. Some from Lindsay forcing in the gas and air mouth piece.
Back to town to finish off. Everything got now. Chris and Helen (hairdresser) here tonight. Not having hair done though, head still too sore.
We had Chinese for tea. I managed one chicken ball two spoons of rice and five chips. My stomach felt like I had eaten a full course meal.

They helped me make the little cakes as some are for Cilla and Ben, as part of their Christmas present.
I am finding it hard to think straight. I dropped the icing sugar then could not find things that were under my nose. I did manage to get them done with their help. Thank you both.

 My Christmas cake, one of four I made..

 Little cakes.


I don't feel Christmasey at all, thinking of people who should be here. Mouth is healing but so slow, but I suppose there was a lot to heal. Sometimes I think you don't know how ill you have bean until 
you start to get better then its a long road back again.
Andrew here from Amsterdam for the Christmas time. Wayne from Halifax here only two day then home to work. He will come back on Saturday with Will.

Christmas day--
Dinner went perfect. I ate my biggest meal since 10th December even then a child's plateful. Lindsay and family came round after dinner. We did originally say they were all coming here, but I did not think I could cope. Noise is a big factor for me, it produces a lot of extra pain.      
Everyone had a good day with traditional and unusual presents. The boys and Jamie-Lee mostly had clothes from us with a couple of games. Everyone liked their things.
So nice to be home. A really nice day.

Wayne making the boys laugh in his onesie.
Its Christmas.

Wayne again.
Busy busy.
Jamie-Lee, Tommy-Lee and Lindsay.

I got Jamie-Lee a new hat.
Jay-Jay cool as ever.
Tommy-Lee cool as well.
Wayne on the wine not so cool.
Pretty girl.

Wayne and Summer.
Andrew. Peace and pot.
Hard work Christmas.

Andrew and Summer.
So tired.
Me and Summer.
Thumbs up from Jay-Jay.
Jamie-Lee and Lindsay.
Jamie-Lee with her little bag.
Tommy-Lee and his curls.

Tracy not a good one but the best I got on the day.
Jamie-Lee and Lindsay. 
Bye bye-- going home.

Family picture. Jamie-Lee kept turning round and made everyone laugh.

Too much for Summer

We had the cat, ginge, from two doors away here with us as well. I think he came to see Andrew. When Andrew was here he used to sit on his knee a lot outside.

 Andrew with Ginge.

 In Summers basket again. He thinks he lives here!

Wayne's gone back home, he's here again on the 28th with Will.

 These are the slipper we got Will. Wayne took them back with him. Helen bought them for me while I was in Hospital. Thank you Helen.


 Lindsay and co here very excited they are too. Summer just plays and loves everyone.

 A very happy dog, even though ginge pinched her basket.

Late evening a lot of powerful spams and pain. The pain went from a 4/5 to 9/10. Hopefully its just the long day I have had, and not the fits starting again. I am very tired.


Popped into town to change a few things that I got wrong sizes of. Walked there bus back for once, I got home in about fifteen minutes. I thought the trains were on strike or was I just lucky?
A lot of pain in back and hips, also right heel is burning and sore. This is pain from walking.
Does not matter what I do the pain will get me some how.

Finished off the last Ted for after Christmas- late present.


Wayne and Will  here. Will is having his presents from us and family ones today, also shared ones for Wayne and Will not forgetting Timmy the cat. Plus presents from them, another nice day.

Will getting excited at his Mums house.

Tracy, trying to keep the boys calmer.
Now Jamie-Lee joined forces as well no chance.
             Me not looking too bad considering the melt down. As you can see my lips are still bad.
Will looking very Happy.


Very sharp frost cold as well but beautiful on the common. I feel just about me again still quite a few sore bits but mostly healed. A lot of spams in my head and neck quite powerful ones too.

Wayne and Will out for the day. Andrew back to Amsterdam later, tea time flight. I think he will be pleased to be back home. So just me and little Summer most of the day. Summer is not well keeps being sick. She has had nothing different so she must have picked something up on her walks. She is not eating at all and very tired. poor Summer.

Message from Andrew the plane has landed he is back home again.


In town with Wayne, just having a look round, he even treated me to dinner, a Subway sandwich, nice it was too. Not often I am treated to dinner out, thank you Wayne.


Awake a lot of my short night not too sure why as not in any more pain than usual my feet were very hot though.
My bother David and his wife Bev are here for tea. Tea went well a buffet type help yourself. I made them a Christmas cake and was a bit worried that it would be dry as I fell asleep (About four in the morning) and it cooked for a little longer. They said it was beautiful and moist. A nice night good seeing them.
Summer has perked up a bit and is eating now. Spoke to someone that goes on the common with their dogs and they said quite a few dogs have bean ill..I am just pleased she is a lot better.


I feel at times like I am in a boat with a hole in it and I am battling to keep afloat bailing out the water as fast as I can. Along comes some debris and blocks up the hole and things are good for a while. The water flow gets stronger and the debris gets washed out and I am back to bailing out again. 
I know that's life, but its a lot harder with RSD. sometimes it all gets too much !!!

Hope you all have a Happy and Safe New Year and things go right from then on, or better at least. 
All the best to you all Love Gill. 

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