May 2

May 7th

I feel a bit more with it now, stomach still a bit sore though. I think I might have pulled a few muscles, but that will soon pass hopefully.
I had two cream crackers for dinner and this is the first meal I have had without wrenching and feeling sick.
Knee pain is either terrible or mild. Not too sure how much of that pain is from the RSD. My other knee the side, the RSD started, has bean hurting a lot more too. I know RSD can mirror so it could be that but I think that's usually from the RSD side to the good side. At the moment I have no good side. That will soon change though. I prefer to be outside when I can with Summer when possible. I have said before I feel like a caged animal when I have to stay in.

I am having to go to bed when Paul does first time in years ( INSOMNIA) I listen to my ipod for  around two hours till I felt like I could sleep. I was hoping this OPERATION would help the INSOMNIA like resetting the clock, but no--- its still the same long nights and short days. You do get used to very little sleep though, and it becomes my way of life. Margaret Thatcher did it


Paul out for his dinner as usual. Lindsay here to keep an eye on me. Hands and arm bruising fading now. The RSD cold thing, feeling any little change of temperature for instance like the outside door opening or just someone going past you. This is going crazy--my legs are so cold, arms too. People have got on shorts and summer tops, I am in two long sleeved ones. Hopefully this will pass when I can move around more and get out. Most people get this in early stages of RSD. I still do but not quite as bad as this usually.


Knee a bit sorer today and feels tight might be the stitches pulling it. Not too swollen, less than I thought. Stitches come out 14th so not too long then I can have a bath filled nearly to the top with bubbles and stop in as long as I can. This is usually not very long as my legs complain with pain. I will post a picture of my knee after stitches are out.

My friend is having her stomach operation today so all the best to her, she is very scared I have tried to reassure her and so has her brother. He rang later and she is fine and awake, chatting to everyone.

Watched two episodes of Star trek Discovery with Andrew the second one was very good edge of seat stuff.


Went to see Angela she looks very well, you would never know that she had a big operation. She said she ate all her Sunday roast dinner plus pudding. I have still to get my appetite back.

Paul did roast beef for tea and I managed a small plateful the most I have eaten in nearly two weeks.


Summer had a weird do last night, she was very unsettled when we went to bed, not wanting to go in her basket and a bit shaky. She is very scared of certain beeps and if the smoke alarm beeps to say the battery needs changing, she freaks out. Also certain ring tones on the television. 24 hours in A and E gets her very upset so does GP's behind closed doors.  I watched these with sub titles for a while then gave up, as I don't like them at all. The cat two doors away is Summers friend, he cries out a lot as he is old, probably got dementia. The cry is like he is in great pain. So Summer gets very upset and wants to get out to help him. I think this might have happened last night. She had scratched the bathroom door and cupboard door too. Her claws are very sharp and strong so she made quite a mess. She did this same thing a while back.

 Cupboard door.
Bathroom door.

Went out on my scooter with Paul and Summer, nice the first time I have bean anywhere. The scooter is not easy to get out and impossible for me to do at the moment, hard at the best of times. We are hoping to get the door way and step altered so it will be easier.

My friend Jenny came to see me and bought me some flowers, that was so good of her. Nice to see someone and have a chat. Told me about what had bean going on at Age UK.

The Nurse took out the stitches from my knee, two on each side hardly anything to look at. I have had a lot worse injuries with my seizures. Bath here I come water wings at the ready.

Bath was good I washed my hair but did not stay in long as both legs hurt a lot but it was very nice.

Going to leave the radio on for Summer as back ground noise, hope it will help a bit.


My friend John came round to see me and we had a good catch up chat he has not bean too good him self so it was nice to see him well again.

Summer has bean good over the last two nights so the radio will stay on for a while, whether it helps is any bodies guess. She might even be having a disco!!

Knee very painful today very numb on left side and along the shin same side. RSD not helping but when does it ever??

Chinese for tea, very good it was, small portions for me though.

Had a bath but did not feel too good so got out. I was light headed and dizzy sat on the floor for a while with everything going round and fuzzy fuzzy. I passed out briefly then Paul came in and helped me.
I sat on my chair very clammy and sweating a lot, cold and hot at the same time. After a drink and sit down I felt a bit better. Still not quite right though and I had a bath too I feel like I need another on now after all the sweating. Paul thinks I have the bath water too hot but I don't think so. I know a lot of the time I can't feel hot or cold the same as I used too be for RSD.


Dull start after a few quite nice days. On my own most of day again as Paul is out at a BBQ I could have gone, but its a bit cold for me to sit out side as my temperature levels still not right. All the talk would be football anyway. So me and Summer looked after each other as usual.


Not a good night awake most of it I think its going to bed at a earlier time. My bed time before was later but it suited me and I did sleep a few hours. But last night, ages to get to sleep after listening to the Ipod for two hours. Asleep a bit, awake a lot, this went on till 6-00am then I slept till 8-00am. Soon after I got up. Headache and feeling very tired and wobbly on my feet, and more pain than usual knee very stiff.


Not feeling the best today-- need to get out the house more and back to my normal or near normal self.
My back and shoulders are hurting from the crutches but I still need them for a while yet. Ok in the house but outside it gives me more support.

I did three loads of washing and put it out then ironed later (not a lot though) I have probably said before I sit on the table to iron. That way there is no pressure on my legs.
Not a good day pain wise, just about every where hurts. I thought if I just moved about more this would help but not at all. I don't think it made it any worse just the  RSD being a total dick.


Ness from two doors away came round to see me. She and Squidge work so I don't see her very often. They are all going to Norfolk for a few days. I am looking after Tabby cat and Ben's Hamster Mustard.

Potted up the chilli plants into big pots so they will not need to be potted again. hopefully we will have a few chillies soon.

Went to bed later than Paul tonight, I am now going up and down the stairs on my own now so it makes it a bit easier for me. I am still not too good on the stairs but safe enough. I was not that good before I had my knee done though. Knee pain not too bad but more than I thought it would be by now.


Went in the cupboard where we keep the bread and biscuits.The cream crackers packet was torn. Weird I thought then I saw that the biscuits were nibbled. Oh no we have a mouse. I took everything out and threw away the nibbled things. Washed out the cupboard and left two bits of cheese to see if it was still here. Early hours I looked in the cupboard and staring back at me, was not a mouse but a shrew. A tiny weeny one, looking straight at me, not scared at all, even coming towards me, more like a pet. I shut the door and got a bowl hoping he would jump into it. No he had other ideas he jumped down and ran under the fridge and kept peeking out like it was a game. He then ran out again, around the bin and back under the fridge. I did not want him in the dining room as there are loads of places to hide. He then peeked out from under the fridge again and headed for the open back door. Summer was on the grass before she went to bed. The shrew then started to go more towards the back door, please head out thought. I then thought of Summer coming in, but she did not. He paused on the frame as to say goodbye and off he went into the drain outside the door. I threw the cheese I had left in the cupboard and a few bits of biscuits and shut the door. When I opened it again he had gone. so had the cheese and biscuits Summer was still on the grass. I think he came in the door, no more than two days ago, so its right he should leave by it. By now it was 4-00am so I settled Summer and went to bed. Happy the shrew had gone with out getting hurt. I left some bits in the cupboard just in case he had a mate.


No more sign of more shrew mates so it looks like he was on his own. As I said I think he came in through the door and went under the kick board where there is a gap. I have Christened him Sly as he was was very sly. I just wish I could have got a picture of him, but my camera was upstairs and I did not want to take my eyes off him.

I pricked out my tomato plants and put them in the mini green house its a bit warmer than the big one. I have more than enough so if a few don't make it all will be fine.

Went to see Angela she is doing well but not quite ready yet to come home. Her brother has gone back home to Wales and will come back again soon.


Went on the common with Paul and Summer as I am still on the crutches. I can not go on my own because of Summers lead. Used the finger less gloves (bike gloves) from when I was on crutches before. They stop my hands from getting very sore. Shoulders and arms hurt though and there's no magic cure for them. I use them only when I have to so that helps. Soon hopefully I will not need them. Nice to be out again  and on the common, Summer thought so too.


Went round to feed Tabby (real name Chubby, we have always called him Tabby.) and Mustard, fed them both and stopped awhile stroking Tabby. I played with Mustard for a while but did not take him away from his home. I was a bit afraid I would drop him.

 Mustard. He is a beautiful colour.
Tabby cat (Chubby)


Helped Paul clean up, well-I only did the bathroom but its a start. Sorted out Tabby and Mustard. Tabby is an old cat and quite vocal at times. I shouted him and he comes down the garden wowing at the top of his voice. Very pleased to see me. Took Mustard some cauliflower leaves to munch on, he liked them very much.

My knee is quite painful today and a bit more swollen. Taken a lot more tablets than usual.


Not good news my big cactus has started to go rotten, the one on last months blog. Going to re pot it in some different compost. It did get quite wet last time so that could be it (down pour just after I re potted it) but it was quite soft at the bottom before I started. Hope I can save it. 


I heard Tabby crying around  6pm I went to see what was wrong he cries a lot but this was a bit different. He was wet through and cold so I dried him off fed him and left him in for a while to get warm and dry. When I went back later he was still on the settee, he had a bit more food then went out again.The rain had stopped. Sorted Mustard out so he was happy.

I lost a few tomatoes today because I did not open the greenhouse when the sun came out, it was cold earlier but soon warmed up. Good job I have quite a few.


Ness and family are back later today so last time for Tabby and Mustard. Today is also Emmie's Birthday. Lindsay left Jamie-Lee here while she went to see a friend that went to A and E. She was ok in the end so came back here for a while. Jamie-Lee went with me to feed Tabby and Mustard. Bit nervous of Mustard but she knows Tabby well. He was purring a lot while she stroked him.

Back home again and playing with the cooking set, Duplo, and Buckaroo. We managed to get all the pieces on the mule and he did not kick them off.

There-- everything on.

Lindsay was not feeling her best today and had a sleep while we played.

Popped round to give Emmie her present, a dog hand bag, a bit like Summer she liked it and took it to bed. They were all tired so I did not stay many minutes.


Opened the greenhouse door this morning and the snails have had a few more tomatoes, this happened last year with the cucumbers. Put snail killing pellets all around.
  My little green house.

The cucumbers are still inside the house till they are bigger so they are safe.

I have put the cactus outside hoping it will dry out and start growing again and recover.

Knee not as good as I thought it would be by now, still need the crutches outside the house. May be the RSD is holding it back. I am at the Doctors tomorrow so I will ask her, not seeing my own Doctor this time. If I wanted to see him I think the next appointment would be around the end of July. Stupid or what, taken on too many people with too few Doctors.

I made a very nice chicken curry for tea with rice. Summer had just plain chicken with her biscuits she was pleased as well.


Summer now has a new ball her old one does not even look like a ball now. She accepted the new one better than other times I wrapped the old ball round the new one in my pocket so I think that helped.

Spot the new one.

I now have my appointments to see Mr Joby John at Kingsmill 19th June, and one to see Doctor Solinas for my seizures on July 24th.

Appointment with Doctor Patterson-- She was running late by over twenty minutes. I went in and she asked what she could do for me? I said I have a few things I need to ask you about. She said only one thing as I am running late!!!!! I started to go through my list not being put off by what she said. This appointment was made over two weeks ago then changed so I was going to make the full use of it what ever she said. Paul was in the waiting room and said I was in there no more then ten minutes half the time I had waited to be seen..

Lindsay and Jamie-Lee came round on their bikes. Jamie-Lee had biked from her house around a mile and half.

We made a picture frame, also some wood puzzles that you take apart, then some how get them back together again. She did very well getting two back again. Lindsay helped her with the last one.

They left around four pm.By the end of the day- Jamie-Lee had biked around four miles. Lindsay thought she would be tired No she wanted to walk Suey their dog.

Well for me its bean a very long hard month with extra pain and not bean able to get out and do what I usually do. Very frustrating to say the least, fine if you like TV or just lounging around. Not for me though. Hopefully that will improve more than it has. I thought after a month I would be nearly back to full mobility. As I said before I am not a patient patient.

Hope things are going well for you all-- the days are warmer and lighter now so that usually helps RSD pain and mood. All the very best to you all Love gill.


May 1st Wednesday.

Well operation day--  THE KINGSMILL IN SUTTON IN ASHFIELD there for 11.30. Operation on my knee a MENISCUS TEAR KEY HOLE SURGERY- DAY JOB. The hospital is about hour and half away on a good run. I waited in the day room and was told I would be second going down.
Talking to a very nice junior doctor, he was very interested in my RSD. I gave him my blog details he said he would have a look. A nurse came up to me and said change of plan, you are now going down first, because I have an allergy to latex they did not want to risk anything. She said the air would have to be cleaned or something not too sure what this meant, and this takes twenty minutes to clean. Get ready, ten minutes later I was on my way, very calm, almost looking forward to this as it will be one less pain hopefully.

Arrived in the anaesthetic room (1.30pm) and saw Mr Joby John the surgeon. The theatre nurse said looking at him you need a mask I said no he is operating how will he see. She said the mask is for you laughing. She then said to Mr Joby John here are your  drugs "WHAT"  I said DRUGS. The drugs are for you she said, for him to give you during the operation. Everyone laughed, the nurse said you are very calm. The cannula went in, mask on, injected. The last thing I remember was the theatre doors. I thought to myself, I have never seen live in the theatre, I still did not, I was gone.

This is where things went a bit wrong. I started to have SEIZURES after the operation in recovery forty five minutes in all, one going in to another. (I found out later) I was in the recovery room a long time. Paul rang up and they said I was still in there five or six hours later. I was not going home today. I was taken to a ward and had another set of SEIZURES. The next thing I remember clearly was Thursday morning in pain and the usual feeling of having SEIZURES. Not sure where I was. A lady said I got to the ward around 8-00pm.


I was told a bit what happen, on drips, SALINE and PLASMA not feeling too good, exhausted. Big bandage on my knee more for protection than the wound.

Bandage on my knee with dressing under neath.
(This was redressed as it slipped down when I got home.)

The physios came to see if I could walk on my crutches, these were give to me before the operation in the day room. I could not walk, shaking like a jelly and in terrible pain everywhere. I was given ORAMORPH. I could have this if I wanted every one or two hours. Physios would come back tomorrow. Sat out of bed for a while but felt terrible and started shaking. I was put back to bed  They were a bit concerned that the SEIZURES would start again, something no one wanted specially me.
Paul came in the afternoon he was a bit shocked.


On, off, sleep, last night, Feeling a bit better but still feel very weak. The physios came again and I tried again to walk. This time very shaky still but not as much as yesterday still pain.They asked if I could do the stairs. I managed but I just about shook the crutches from my hands. I was passed fit to go. The nurse told me what to do exercises and said stitches come out in two weeks. Still not feeling the best but I was going home. Phoned Paul he said he would be here after dinner.

He left home around twelve thirty so here about two pm. Doctors letter and tablets and soon away.
NO an accident held Paul up at Newark roundabout. He got here at four thirty. I decide to go home in hospital gown and dressing gown, returning it at my check up in around six weeks. The journey was very painful and I still felt very weak. Home, Summer went mad to see me and was crying with joy. She sat with me for a lot of day.


Lindsay here as Paul at football for the day. Lindsay cooked chips for dinner and afterwards Jamie-Lee made cakes. Tracy came later. I sat down and just rested most of the time.
After dinner I felt very light headed and sick. Lindsay helped me to the bathroom where I was violently sick. I then tried to lay down on the bathroom floor, not good as it ceramic tiles and cold.
Lindsay and Tracy helped me back to the chair where I continued to be sick. This is just about the last thing I properly remember. Lindsay, Tracy and Jamie-Lee stayed with me till Paul got back. They were getting ready to go home when I started to be ill.

Paul came home around six thirty, and I was slumped in the chair and not very responsive at all. Later in the evening I got worse, still wrenching and was very unresponsive and about 11-15pm he called for an ambulance. I was taken to hospital where I started to have more SEIZURES and still being sick till there was no more to come up, wrenching and in terrible pain like GASTRIC FLU. On oxygen and a drip Paul said the Doctor had a job to get a line in as my veins are very thin and hide when I am ill.  No wonder I have so many bruises where he tried. I had a chest Xray and a CT scan on my head and stomach. I was admitted to a ward around seven thirty am. Everything hurts, stomach terrible pain just about everywhere. The ward is very noisy as it straight from A and E.


Trying to make sense of what has happened. The nurse sat me in a chair later, but I started to shake a lot so back to bed for me.Worried about more seizures, violent headache, the nurse said this is most likely dehydration. Still on a drip (three bags in total)  Lots of blood taken to test for electrolytes as very low (something to do with your blood)  probably because I was so sick. A horrible day and so much pain. Had to wait for pain relief as they were so busy, not good for RSD. That did not help much, not really any sleep either. If I sit up I start wrenching and feeling dizzy. Saw it get light from pitch black not a good night. I want this nightmare to end, but its not a nightmare its so real.


Feeling quite a bit better but still quite shaky, still stomach and chest pain, knee not too bad, at least my head ache has gone.
I also saw the PHYSIO here as well and she had me walking with a zimmer frame.


Which I can take home with me and I have my crutches at home too. I got on quite well considering  my chest and stomach hurt so much and how shaky I am. She said I am fit to go.

I saw the Doctor and he said I have got a SOFT HEART MURMUR and my SEIZURES are a mixture of EPILEPTIC and NON EPILEPTIC  SEIZURES .The chest xray and a CT scan on my head and stomach were clear.. The heart thing is not a concern, but I need to see the Neurologist and will be sent an appointment soon. I hope it's Doctor Solinas I see, as he knows me, from the very bad SEIZURES I had before. Anyway home in two hours time, just to make sure I am alright.

A nurse took out my cannula I pressed on it for a while, it was in my arm bend, I then sat and listened to my ipod. A bit later my arm felt wet, I looked down and there was blood dripping out. A big pool on the floor and all over the bed. I shouted the Nurse and she sorted it out. Did you press on it? Yes I said. The more senior Nurse said it can happen. I have at least two pints left he was joking you have around nine to ten. I had lost about half a pint he thought. Good job I did not go to sleep. I said to her you nearly killed me. She looked very scared but I made her laugh by saying I nearly did not go home.

I rang Paul he was surprised as we were told that I needed to see a Neurologist before I went home. Anyway I am not complaining two different hospitals in two days is not good.

Paul picked me up and got all my tablets and second doctors letter and we were off home.
The journey was painful my knee felt every little bump so did my stomach and chest.

Summer again was very pleased to see me and sat with me a long time. Poor Summer she does not know what to think as I keep disappearing.
Phoned up a few people to tell them I was home. I think if you ring up your self, and they have spoken to you, and not a messenger they feel more assured.

Bed time struggled to get up the stairs but I was looking forward to my own bed and not one that's get you hot and sticky. Home and please no more hospitals for a while.Mr Joby John did say it was a risk with the RSD and SEIZURES. If it makes my knee better it will have bean worth it.

Slowed down but not for long.

I put this short blog up to let you all know how things went with my operation.
All the best to you all and I hope you having a better time than me Love Gill.

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