Flaming June


June 1st

Another seizure in the night, only bean a sleep half an hour. This lasted about 2 minutes. Paul woke up half way though. My mouth was so dry I could not even talk till I had a drink. I tried to sleep again as best I could. 
I feel very tired today I have that wolley head again. I always get after a seizure. Not as good day as yesterday. 

Lindsay wanted a fitting for Jay-Jay's scooter, I found the replacement wheel set she got Andrew when he was about 8 years old. She thinks they will fit.


2nd
 
Not a good night, awake a lot of it. I am going to try 1 DIAZAPAN  before I go to bed to see if that will help. I had stopped taking them soon after coming out of hospital. I don't really like being on them. Headaches, dizzy, not being able to think straight a lot of the time and just the feeling of being some where else not good.

I have now finished sewing up Emmie's jacket just the toggles to put on.

Not too bad a day I just wish this head ache would go and the I feel my head is bigger than normal and some times not attached to my neck. A very weird feeling side affects of the DULOXETINE  I think.
Doctor Metha is speaking to me tomorrow as I have a lot to discuss with him.

3rd

DIAZAPAN did not help me sleep worse night than the last.

Lindsay and Jamie-Lee popped round, she knew I was going to physio and was staying till I got back.


I have Physio today with one of the 2nd year students, next years 3rd years. The same as I started about 2 years ago.
She was very nice, listened to what I said kept asking me if I was comfortable. She had bean on my blog so knew a little about me. After a talk she went to see her Tutor to discuss the treatment I would be having. She marked up the points for the needles and he came and check them. He put 2 needles in my shoulder in the tender point that has bean playing up for a long time. They hurt quite a lot. The student then started putting in the rest watched by the tutor.
I had 4 in each lower leg, 1 in each hand, 1 in each wrist, 1 in each elbow, 1 in lower stomach 17 in all. A very nice first time session with a new Physio. 
Paul picked me up and also took me there. My shoulder hurt a lot for the rest of the day. That  is normal for me though.

Jamie-Lee was asleep when we got back. Lindsay said she had bean running around with the hair remover after Summer. We could have had a bald dog. She had bean in one of the cupboards. She hits one of the doors with her bum Lindsay said, till the other side door opens. Summer was not in much danger as Jamie-Lee just walked around with it in her hand and never tried to open. She woke up and had her dinner.

Paul gave her a lift to school and back to pick the boys up.
Just as they were going. Dr Mehta arrived I had spoken to him on the phone and he decided it would be better to give me a home visit. We discussed my tablets as for the DULOXETINE  he has split it up into 2 doses instead of 1. He thinks that will help with the side affects I am getting. He has also prescribed MELATONIN to try to help me sleep better. I am to see him on the 24th of June to check how things are going. Bed a bit (40 mins) after Paul last night and took my MELATONINE .
A lot of shoulder pain but that is normal for me after acupuncture.


4th

Not too sure if it had much affect as I was awake a lot still. Before this Hospital stay I used to go to bed anywhere between 2am and 4am on a average night. Asleep after about half an hour for 3-4 hours then doze till I got up about 8.30-9am. I am probably getting more sleep now but its in bits.

I got weighed still the same 7 stone 10 pounds. My shoulder feels a lot better today after the acupuncture more movement and hardly any pain. I now completely finished off Emmies jacket.

I hope she will like it and it fits her.



I went out with Paul and Summer I know it was on my scooter but I am still not able to walk very far yet. Summer was very excited I went, It was nice to be outside. I enjoyed it, I will enjoy it even more when I am able to use my own power. I miss the common and the morning walks with Summer. On there you can think and just take everything around you in. The horses the birds the rabbits and the foxes, Even though I have not seen one myself. Only a few months ago one of my friends saw a foal being born. Freedom. Bed a bit later about 1.30.


5th

Not too bad a night awake a few times but I was able to get back to sleep again.
Joints are bad today.  Still a funny head as well, Could still be the new tablet DULOXETINE. Stormy air still. I know this affects a lot of with RSD(CRPS). Even to the point if you work you have to go home. A lot of my joints hurt, you get that feeling when you touch them and they feel very tender and just hurt a lot. Never mind I am a lot better than I was this time last month and not in hospital. Just lately I have spent too much time there.

Went out with Paul and Summer again on my Scooter. Just got back and it rained very fast.
On a much better note Tommy-Lee has got his blue belt well done Tommy-Lee,  Nans proud of you both. A bit to go before you catch up with Jamie-Lee though.

  Tommy-Lee looking so proud of himself.

Helen and Chris came and Helen cut my hair I look a lot better now almost human. She did not colour it because I still have a few sore bits on my scalp. Paul cooked the tea sausage onions potatoes and veg, rhubarb and custard. We all enjoyed the meal. I still have not much of an appetite but it is slowly improving.


6th

Fair night I think the MELTONINE might be working or the extra drugs I am on. I am going to bed about 1.30-2.00 am. Asleep with in a few minutes. I don't sleep all night, But when I do wake up I am able to get to sleep more easily.

I went next door to see Ben, he is doing good. This time it was not so hard for me either. Cilia was a very good friend and neighbour and I miss her a greatly.

I also took the jacket I made to Emmie to Ness her mum, she thought it was lovely and loved the colour.
Emmie is a very gentle quite little girl, just the opposite to Jamie-Lee.

Went with Paul and Summer again. This time I walked on the common. This was very nice. Hopefully soon I will be able to go and walk the whole of it. 

On the whole quite a good day. pain levels at the moment are good and the seizures have. Not one since Sunday.

8th

5KM RUN FOR LIFE RACE. I am taking part, I was hoping to run it but have only bean out of hospital less than 3 weeks. So I am taking part in my wheel chair being pushed by a Mum, Anita (Who is a nurse) and daughter, Louise (who has looked after disabled people) duo, Anita and Louise. I asked if they would push me and they both said yes. I entered for the race before I went in hospital. I was going to run it with Louise while her Mum walked the course. That was not to be though. I am happy I am even able to take part. A sunny warm day with just a warm breeze. Yesterday it rained a lot. Paul volunteered to be a marshal.
 


The time came and we were off, good going on the road but we soon we were on the grass. A lot harder going for them. A bit bumpy in places as well. Anita and Louise kept swapping over to have a rest. I walked for a bit but my legs started shaking so I was ordered back in my chair before I fell over.  After quite a bit of grass we were soon on the road again. Making up good time and passing quite a few people on the last 1 KM of the race. We got to the spot where Paul was stood marshaling and he took these pictures.

  Just passing Paul's marshaling point.

We saw Lindsay, Tracy and Jamie Lee, Jamie Lee looked very confused as she had never seen me in the wheelchair at all.
 
 Jamie-Lee before the race all ready to come and watch me and Auntie Lou. Plus of course the thousand other lady's that took part.


They walked along side of us for a while then Lindsay went to the end to get some pictures of us finishing, leaving Tracy and Jamie-Lee to walk with us for a while to the finish.  I said right at the start I would like to walk the finish if I was able to. I misjudged it and it was further than it looked I started to shake. Asked if I wanted to go back in the chair. The answer was NO, I will finish it on foot. The commentator was saying look at this lady started out in the wheelchair and finishing on foot.  Look at the determined look  on her face. The crowds were clapping and shouting. I was just trying to concentrate to finish. YES I did it, just though. I sat in my chair not feeling the best. BUT I DID IT. We all got our medals, cake and a bottle of water. 




We did it yeh (only just for me).


We found a quite spot to have a rest and drink. I got out the chair and laid on the grass. Shaking a lot I was very close to having a seizure as I could not control the spasms and the all over shaking. I tried to relax and Weitse breathe and some how fought it off. The Ambulance was very close and the thought of more hospital bought me round. On the other hand seeing it so close may be made it worse. Any way what ever happened I was alright. I sat up and ate my cake and had more drink.

After a while Anita and Louise left and we went to find Paul who was still on the course. Jamie- Lee was shouting Grandad at the top of her voice. When we got to him we all stopped together as the bigger 10KM race was still going on. We were clapping and cheering them on there last final push. Jamie-Lee was clapping and saying well done and bye bye to every one. There were a lot of dogs in the race as well. She also said well done dogs. When the last ones had gone through we headed back to the tent so Paul could give back his radio and yellow vest. Jamie had a run round as well.

A very good day and hopefully a lot of money made for Cancer Research. We headed off for home tired but very pleased.
 
 The lady in the middle is Carol who had cancer but now is recovering.


 

Lindsay put this picture of Jamie-Lee on face book. All raced out.


After having some dinner I went for a lay down and managed about half an hour sleep.
We got a lot of well done messages from face book. I was just so pleased Anita and Louise made my day. Thank you both very much. 




My well earned medal.
Paul in his volunteer T shirt- front

and back.

9th

Today Paul and I are going to do a bit of gardening. how much I will do I don't know. With all the rain and sun in between everything has gone mad, between us we got quite a bit done. Guess what, then it rained and a bit of thunder and lighting as well. The rest can be done another day.

My beautiful Lilly's




Bev my friend from Beeston rang and said would you like a visit tomorrow yes please I said. So something nice for tomorrow.

10th

I think the new tablet DULOXETINE. is helping with the nerve pain I have bean able to cut my GABBERPENTIN down from 6 to 3. The less the better for me. I am also sleeping better and not waking up for so long.  So far the side affect I am getting I think from the DULOXETINE (you can never be sure though.) are shaking heart pounding, blurred vision, tired, no more than tired- worn out and a sore throat. So not too bad. Hopefully this will form a pattern that will carry on after I stop the MELATONINE.

At last a walk on the common with Summer and Paul. On my own two feet not the scooter. Very hard going as still week and my legs still very shaky at times. Summer liked it as well. While I sat down at one of the picnic tables Paul took Summer round a bit further, when she saw me on the way back she started to run very fast her ears pinned back. We saw 4 Westies on our walk today.
Made it back home and I was quite proud of myself. I have bean home 3 weeks today.

Bev arrived, armed with flowers and cakes for us all. So nice to see her its bean ages. 24th March.   We just sat and talked. I showed her the garden and the greenhouse. All doing well. She caught up with my news not so good. I caught up with hers, a lot better. She said they flew to Skegness at the weekend. In Dave's plane the same one Paul and I went up in last year. Think no traffic- no hold up- GREAT way to travel. Too soon- it was time for her to go back home. They have an allotment so lots to do. Thank you Bev for a lovely day. Hopefully 2 weeks time I shall go and see her.

Most days I am still having a lay down not always a sleep though now. I had a phone call from Jo my Pilate's teacher. I hope to go back very soon. Jo has helped me a lot in various ways. So I am grateful to her. Jo has asked me if I would like a few weeks at another class she does. Chair Pilate's basically sit down Pilate's or stand up holding on to the chair. I know a lot of the moves we do in the standard class can be done sat down. I think this will be good for me as it will ease me back into it again. Not be as hard on my body or as tiring. 

11th

Another walk with Paul still a bit shaky but very enjoyable. As I said yesterday I sat on the seat, while Paul took Summer a bit further. No chance to day, she would not leave me. Paul walked round on his own. 
Lindsay called in on her way back from the doctors with Jamie-Lee. They both spent the day with us.
Jamie-Lee was very funny and cheeky. She pinched Lindsay's Mars Bar and hid in the play tent. She asked me to fasten the door, So Lindsay could not see her. Lindsay said I can still see you through round window (its made for a tunnel) So she pulled the tent down to the floor, and said not now.

Lindsay left to pick up Tommy-Lee from Akido then on to Asda's. Jay-Jay is representing his school at a hockey tournament. He is getting picked up later.

 
 Well done Jay-Jay.


A good day I am feeling better today more like the fit me.

12th

Not a bad night, slept quite well. Awake about 5am and dozed after that. I went to bed about 2am.

Acupuncture-- I saw a different student today a male one. He was very nice as they all are. Usual pulse and tongue observations taken. A few questions as well. Also blood pressure done.
17 needles in all-  10 in my legs some of them hurt as he goes a bit deeper with the needles than others. 6 in my arms and wrists. These also hurt as well. 1 in my stomach. I was then left to relax as much as I could. The pain from the needles had stopped. I lay there flat and a very sharp pain came in my left kidney area like a knife  in waves getting stronger then reversing getting weaker. This happened about 5 time then stopped. When the student came back I told him and he smiled and said one of the needles was a kidney one and the pain from a good reaction from it. I did not know he had put this kidney one in. So for all the sceptics, you say acupuncture does not work there is the proof. I have had several very good reactions in the past. This probably being one of the strongest. I felt good afterwards as well. Paul came to pick me up.

13th

Took Summer for a walk with Paul its going to be a very warm day. We are both going into town today. I have got an eye test and there is shopping to do. We walked down, well Paul did, I was on my scooter named Brum by me when I first got it about 8 years ago.

We got to Opticians its quite cool in there, so Paul loved it. I was quite cold on my arms and legs.
A few tests then in to the main test room. Woh it was so cold in there I started to shudder, The  Optician turned the air con down, then off. I explained I was not able to maintain a stable  temperature. I sure it was a fridge cold in there. Lovely for most but not me.

The testing of my eyes started after a few questions. I told her about the seizures and how my eyes were a bit blurred at times. After the main tests it showed that my distance is alright but my eyes for reading are a tiny bit worse. So I need glasses for reading. Not bad for the first time at over 59 years of age. I had drops put in both eyes so she could look at the back of the eyes. These make your pupils go very big. We were to come back in half an hour time for the drops to work. We went for dinner.
Wow the drops had more affect than last time. My eyes were very out of focus to the point of not seeing much at all unless it was right in front of me. The sun was very bright even with my glasses on.

We headed back to the Opticians she looked at my eyes and said they are ready. This test involved looking at eyes with a very bright light that made my eyes sore. After all the pupils go big when there is lack of light. Soon it was all done and everything was about the same as last time. I was a slight bit worried about this part, because last time the black spots had appeared in my left eye along with the light flashes. This also was now happening in my right eye. The news was good so I was relieved.

Just to get the glasses now I chose a reddish pair they looked good on me.  Paul paid and we left to carry on with the shopping.

 .
My new reading glasses



My wrists and arms ached to the point of my left hand going numb and loosing grip on the scooter. Today had bean a big day for me as this is the first time I have bean out anywhere busy since before I went in hospital- about 7 weeks ago. I  was quite exhausted when we got home and in quite a bit of pain. A cup of tea then a lay down is whats needed. Paul too had a sleep. I tried but the pain kept me a wake despite having tablets. I felt very shaky when I got up and ached so much.  I realised I have still got a long way to go before I am back to my normal self again. Hopefully I will sleep to night.
NO it was very humid. My body was so hot my legs ice cold. Paul was awake a lot as well. Hopefully I will be alright tomorrow.

14th

After a bad night for both of us even Ben next door said he was struggling to sleep and he usually sleeps through most things as he feels the cold very much. Paul took Summer for a walk on his own today so I could get over yesterdays outing.

Lindsay and family are coming tomorrow instead as its Fathers Day.

Another very warm day but more cloud stormy air still, we need a big storm to clear it. I am very tired today, but at least most of the pain from yesterday has gone.
 
Paul is at a cash collection. so I am on my own this morning with Summer of course.

Later that night there was a knock at the door and Wayne stood there a surprise for Paul for Fathers Day. I knew he was thinking of coming over but he was working all day, so he was not too sure if he would get. A bit a luck he finished early and he even had a cold as well. Paul was really pleased, something just for him.
He also has another surprise tomorrow Lindsay is cooking the dinner roast lamb.

Wayne called me skinny as I have not put back any of my weight yet.


15th

As I said Lindsay is here to cook dinner for us all. Things were not going too well for her so Paul ended up doing the vegetables. I put the roasties in the oven but I was a bit dizzy so I had to sit down. Lindsay arrived with the lamb she cooked at home. This way Jamie-Lee could have a sleep before they came.
Eight of us sat round the table Paul, Me, Wayne, Tracy, Lindsay, Jay-Jay, Tommy-Lee and Jamie-Lee. 
The dinner was very nice there was gammon as well. Thank you Lindsay for the meal  and Tracy for washing up. Paul got some very nice presents from Wayne, Lindsay and Tracy. Andrew had already got him a present earlier in the month.

Wayne had to go to get his train back to Halifax. Paul took him to the station.
After every one had gone I went for a lay down. A busy but nice day.
 
16th

Fair night, slept quite well. A colder day and drizzle, it brightened up later in the day.
We took Summer for her walk and saw the swans with their babies. I think they are the same ones I took a picture of in Aprils blog.


Summer and I on the bridge.

 These are for you Cilla, my friend.


Lindsay phoned up and said Jamie-Lee had caught Tracy in the eye while they were playing last night and her eye had swollen up and they were heading up to the hospital to have it checked out.
The eye is scratched and she needs to go back tomorrow again to have it reassessed.
You don't mess with Jamie-Lee after all she is a black belt !!

Don't mess with me Tracy.


Sally my friend came today after her treatment at the hospital. So good to see her. I feel like I have known her a long time not just a week while she was in my ward. She is very pretty and a natural person. She reminds me of a younger me, high spirited and not giving up. We have arranged another meeting next month.  


17th

Fair nights sleep I did not take the MELATONIN either as Doctor Mehta said after a while I would develop a pattern of sleep. Hopefully that would be nice. I am still going to bed quite late but I am sleeping better. I feel more tired though it could be the DULOXETINE (I hope to reduce that when I can). I know when I was in hospital they mentioned CHRONIC FATIGUE a few times so it could be that, or just still week from all of it.

When we got back from Summers walk, Lindsay Selina and Jamie-Lee were here. They are going into town and so are we. I am going round town in my wheelchair as I'm still not very strong. We got what we needed in town. Very tired when we got back. Paul is taking Tracy to the hospital to have her eye checked again. Her eye was good so everything is back to normal for her.
I had a lay down in the afternoon while Paul was out. Lindsay called on her way back, she had brought Jamie-Lee some shoes and trainers. She has gone up a whole size now 5 1/2. The trainers are pink and the shoes are burgundy colour. She likes them both. When she walks flashing lights appear. Very smart.   

I finished off Andrews gloves this is a summer weight wool as the nights in Amsterdam can be a little chilly, all them canals. He is here on Thursday for a few days.

18th

I am going to "Chair Pilate's" today with Jo the same as before hopefully this will get me back into it then I can join my group again. This went quite well a lot of the moves are the same just sitting down or stood behind the chair. Some I found quite hard as we did them a slightly different way. I felt the muscles all the same. I quite enjoyed it too. This is the first time I have really done anything much so its a start. I am going next week then hopefully back to the original one.

Doing a bit more knitting this time a jacket for Jamie Lee the same as the ones I have made before.
I had a lay down as well even managed a sleep. 

19th

Another better night this might even be working with the sleep pattern from the MELATONIN. Paul is cleaning up. I am doing a bit more knitting of Jamie-Lee's jacket. I don't know how many of you are knitters, I have gone from 4 ply wool to Aran wool. This takes a bit of adjusting too, and makes my hands hurt. I have about 3 weeks to finish it then Lindsay can take it on holiday for her.

Paul has gone to pick Andrew up from East Midlands airport. They arrived back about 7 o'clock. Chips and curry for tea which they bought on the way back. Andrew has missed a lot of the English food, They do things different there and no Chinese either. So nice to see him, he looks well. After Paul had gone to bed we both watched a bit of television. I went up about 2am he said he would follow but ended up spending the rest of the night in the chair it does recline though so he would have bean comfortable.


21st

Andrews birthday 26 today. -HAPPY BIRTHDAY ANDREW- He liked all the presents he got.


 Andrew with some of his presents.

 One of the hats we got him.

 The other hat.
Andrew with ginge the cat, he aways comes to see him.




Two beautiful pictures Andrew took.



I think she thought she was the the little princess.


Wayne is coming from Halifax later after tea as he is working all day. Lindsay and family are here too. The last time we were all together like this was Christmas time. Tracy took the children home and the rest of us had a Chinese for late tea. A good meal it was too. I am still not back to normal eating but its getting better day by day.  A long day but well worth it.

22nd

Andrew has bean shopping with Paul and got a new E cigarette to replace his cheaper one. Paul bought him this as part of his Birthday presents. For this one you can get loads of flavours. He is very pleased with it. He also got the other bits of shopping he wanted.


We are having a BBQ for all of us
 
Clock wise- Tracy, Andrew, Me Wayne.
 Andrew.
 Lindsay and Summer in charge.
 Don't burn Chiefs.
 Tastes good.
 Andrew in a thoughtful pose.
 Wayne wondering if he could fit any more in.
 Summer waiting hopefully for some.
 YES.
 Tracy very busy and quite..
 Andrew with his cake.
 Andrew again.
Left-Right-- Paul, Wayne, Andrew, Jay-Jay, me and Summer, Lindsay and Jamie-Lee, and Tommy-Lee soaking up the food and sunshine.
 

The children are with there Dad so not coming till later.
A very warm day, I think everyone enjoyed it. The children joined us later. Wayne is going back home as he has work tomorrow, shame he could not stop longer. Paul took him to Newark station as its less changes if he goes from there and mostly quicker.

23rd

Andrew's time has also has come to the end of his stay. He is going back to Amsterdam today catching the 1-00pm flight. Paul is taking him to East Midlands Airport. I think it will be very quite again without them both here. Saying that, I could do with a rest. I ache a lot and at times feel quite dizzy too.
Andrew sent us a message on Skype to say all was well and he had landed safely.

Paul gave Summer a bath/shower she is so soft and snowy white and smells a lot better as she rolled in fox poo on Sunday. She will not be clean for very long though.

We had the children later for an hour for Lindsay. They played outside with the football and a few of Jamie-Lees toys. They were happy to see me again.


  Helping me water the garden.
Summer, me, Jamie-Lee and Tommy-Lee. 


I will help you nanny.


I spoke to Andrew at night and he said he was tired too. He enjoyed his stay a lot.


24th

I am seeing Dr Mehta today to discuss my progress. I have asked him to reduce my DULOXETINE wich he did.I told him about the MELATONIE he was pleased it had worked for me. He said I was looking better but still a bit skinny. I got weighed today and have put on 6ozs that's all. I weigh 7 stone 10 pounds and 6 ounces.  When I came home from hospital I weighed 7 stone 12 pounds. Before all this hospital and seizures I weighed about 8 stone 10 pounds. He is looking back at my past blood results to see if I still need the B12 injections. When I started on them back in 2009 they said they would be for life but things have changed he thinks. I will know more after my next blood tests in a few weeks. Over all he was pleased with me.

Not sure if I had a seizure in the early hours of the morning as I was laid very funny on the chair with my head hanging over the side. Summer was crying and pawing me. I felt very strange and my head hurt. I sat for a while then went to bed.

25th

Fuzzy head this morning another sign of my seizures. Another warm day more cloud and a cooler wind as it rained yesterday afternoon, so it cooled the air down.
We saw the swans and their babies they have grown since last week. Quite pleasant, but I was a bit cold on the common.  

Chair Pilate's again I enjoyed. They are very nice ladies that go. I was going to join my original  group next week, but Jo thinks its a bit too soon and she advised me to carry on here for a bit longer.


26th

I took Summer on my own for a walk, this is the first time since I came out of hospital. Things are looking up at last. I saw a few other dog walkers who said I looked a lot better now. I also saw a man playing a clarinet he was good. I listened to him for a while then headed off home.

I think we both enjoyed the walk together what do you think Summer.

 OH YES MUM.

Night time I joined Paul for a IA meal out at the local Homestead pub.. I enjoyed it more than I thought I would.
I got back and had a bath then spoke to Andrew on Skype. His parcel was picked up to day with the bits from his Birthday that would not fit in his case plus a few extras as well, a home made cake. I hope it does not take too long to get there. A good day but very tired and achey.


 27th

I feel a bit heavy headed and muscles hurt. I think there might be a storm later.
Later in the day I got a very bad headache. Hurry up storm. I have had a weird head for a few day now. A lot of other people have too.

                                                                PAUL'S STORY
28th

Yes unfortunately the seizure have started again, at about 6-20am this morning. Gill had about 6 seizures in a row and I decided to call for an ambulance. The paramedic arrived first, he had dealt with Gill before so in a way that was a bit of a relief, he took all the necessary obs before the ambulance arrived. Gill arrived at the Hospital about 7-20am. Some people complain about the ambulance service but they have always been prompt and very good with us so thank you EMAS. I arrived up at A and E about 7-40am. In the following two and a half hours Gill had been seen by the doctors and regularly checked by the nursing staff, had her blood taken and put on a pain relief IV for her very bad headaches which she has had a quite a few days. She also had a CT scan of her head. At about 11-45am she was transferred to EAU Ward where they decided to do a Lumber Puncture to rule out Meningitis. Up to mid day Gill had had about 20 seizures and not mild ones either. I suggested to the nursing staff that a air ripple mattress would benefit Gill and before I left in the evening they have got her one, which had to be changed shortly after because it wouldn't stay inflated. Again our daughter Lindsay has been a great help as she spent most of the day with Gill and myself.

29th

Gill has had a number of seizures throughout the day and has been in tremendous muscle and joint pain. Lindsay and I spent as much time with Gill as we could. She didn't have any seizures from 4-30pm until when we left at 8-30pm. I do hope she has a restful night.

30th

By all accounts Gill had had a good restful night up to breakfast when she dropped a cup of tea. She had about 10 seizures in a row and the doctors decided to sedate her. She was asleep when Lindsay and I arrived in mid afternoon one of her Neurologist Doctors dropped in to see Gill and she was still asleep, it was only then that we were told that she had been sedated. She started to wake about 7-15pm but was still in a drugged state wide eyed and very frightened, very unsettled and rambling on, saying things like Tommy Lee Tommy Lee Tom Tom Tom over a hundred times and other rants. She started to settle at about 8-15pm so Lindsay and I decided to go home.

Its now the 2nd July and last night Gill asked me to publish the blog as soon as I could and as usual sends her love to you all.


Love from me too.




Jamie-Lee in her Mr Tumble top (picture from Aprils blog). I made this for her.

MAY- be better times ahead.

1st


I'm dreading today as it's Cilla's funeral and I don't know what effect it will have on Gill. I have advised the nursing staff that she could have a bad day today. She is really upset that she can't go and has even asked the consultant if she can go even though she can't even sit up properly yet. Lindsay and I both went to the funeral and after that we went to see Gill, unfortunately I forgot to take off my black tie, a little thing to us but this really upset Gill. Her friend Helen another of our "adopted kids" who is also her hairdresser was visiting and this really helped Gill. We left a bit earlier as Gill had asked the Hospital Chaplain to visit her for a chat about Cilla. Gill hasn't had a seizure from about 6-00am but really hurts everywhere with dressings on her knees, elbows, wrists as well as friction burn type grazes on both hips, shoulder and to be honest on most parts of her body and her back is still painful and she now has bumps and cuts above and below her right eye. I visited her about 6-30pm and she'd just had a big wee that overflowed the bedpan and wet all her sheets and her pj's. She had been complaining of bladder pain most of the day. Wayne our eldest son phoned her and this cheered up Gill no end. Still no seizures up to when I left about 8-10pm. Probably her best day so far which really surprised me. I love you, night night.

2nd

I arrived up at the Hospital this morning at 9-30 as Gill and I had a ward appointment with Jo she's a psychologist. The meeting lasted about an hour and a quarter and was very productive. She will try and see Gill again on Tuesday 6th. I left the Hospital about 11-15am. Gill stated that she had had a few seizures around breakfast time. Visited Gill from 2-00pm until 4-00pm, she wasn't very settled and was in a fair bit of pain and discomfort, a little more settled in the evening visiting between 6-30 and 8-30pm

3rd

Arrived at visiting at 2-05pm and Gill was asleep, she gets mad with me when I don't wake her up but with her having insomnia her body doesn't get much sleep so that's why I don't wake her up. She woke about 3-00pm and had her blood taken for tests just after. Gill said that just before lunch her 2 young male physios got her out of bed and she managed a couple of steps. Well done Gill. Due to tiredness I didn't visit in the evening and this was okay with Gill.

4th

Gill had a few seizures in the very early morning. Gill had discussed her Diazapan with the Doctor yesterday and they both agreed to cut the dose from 1 x 5mg tablet 3 times a day to just 1 x 5mg tablet in the evening, this turned out to be a big mistake because Gill's pain levels were a 10. It was then decided that she would have 1 in the morning and 1 in the evening. She was also a bit upset because she had to have a catheter fitted. The nursing staff fitted a silicon one because Gill has found that she is allergic to the normal latex ones. She spoke to our son Andrew on Skype, he's the one who lives in Amsterdam. This seemed to do the trick and it brightened her up a bit

5th

Gill wasn't too good at visiting time this afternoon as she had had a seizure about lunchtime in her sleep (something that has never happened before) so this really frightened and upset her, she was also hallucinating in her sleep with the big red monsters which she describes as forward facing pacman with big teeth. I decided to leave about 3-45pm as the nursing staff wanted to wash and tidy Gill up and adding a few more dressings to her already growing list and is now in double figures, she also has cuts above and below her right eye.

 
My padded cell as I called it.  

They also changed her bedding as it was covered in blood. Gill was feeling a bit better in the evening visiting time and had a laugh and a joke. She said that she hadn't been to the loo in nearly a fortnight and they were giving her medicine to make her go otherwise it would be an enema. Late Monday night Gill pressed her buzzer to call the nurse and next to that another button to switch on her light, both accidentally. This was done while having a seizure. Her staff nurse thought Gill was very clever as she did both with her right knee.

6th

Gill had had a few seizures during the night. At afternoon visiting she said that she had had a chat with her psychologist Jo and then a meeting with one of Jo's colleagues Dr Shakina Bellam. She suggested that Gill, from tomorrow, try a new drug called DULOXETINE. Gill and I read the information about it and she decided that she would take it to try.

Why is this medication prescribed?

 Duloxetine is used to treat depression and generalised anxiety disorder (GAD; excessive worry and tension that disrupts daily life and lasts for 6 months or longer). Duloxetine is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes) and fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Duloxetine is also used to treat ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time). Duloxetine is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amounts of serotonin and norepinephrine, natural substances in the brain that help maintain mental balance and stop the movement of pain signals in the brain.

I do hope it works as I do worry an awful lot about her.

 
After this her two lovely physios got her out of bed and she managed about 6 steps with a frame. Really well done girl its the most she's walked for a couple of weeks

Cuts and grazes to my face made worse from more seizures and friction burns to the grazes already there.
One of my many sores and bites in my mouth.

 While visiting in the evening Gill had quiet a busy time, her physio from the University phoned her, as did our eldest son Wayne and she also spoke to our youngest, Andrew on skype from Amsterdam. this all seemed to buck her up a bit. Of course our daughter Lindsay was there. She has been a really big help to me as I do tend to shed a few tears when Gill's not very well. I don't think Lindsay's missed a day without visiting and she also has her own family of 3 to look after. THANK YOU LINDSAY, LOVE YOU....

7th

Gills not too well today, her seizures started at 3-50am and had 3 in 15 minutes and also 1 at 10-05am and again 11-15am. Gill was asleep when I arrived at 2-00pm. Gill's hairdresser/adopted daughter arrived about 2-15pm and I decided to wake Gill up, seeing Helen seemed to brighten her up a bit. She was quiet tired at the evening visiting as she had another seizure just before I arrived. Later that night she was quiet relieved, no pun intended, she had a poo the first in 15 days, rumour has it that the local sewage works were put on alert. She also started her new one a day tablet, Duloxetine. The side effects she was having from this tablet was light headedness and her eyes felt like they were the other side of the room.

8th

Gill again had a few seizures during the early hours. She also had a chat with her psychologist Jo. When I arrived at visiting at 2-00pm Gill seemed quiet with it and her brother David and sister in law Bev were there, my mum and dad arrived shortly after. When they left Gill's physios arrived and got her to walk with a frame about 20 foot to the window.
 
 
 Nice to see the outside.
 
Not so easy going back.
 
  Looks like I have bean beaten up.
 

She had a rest and walked back to her bed with a beaming smile on her face with a few of the other patients saying well done, she was knackered but happy. At the evening visiting Gill seemed really tired. Lindsay, Tracy, Jay Jay, Tommy Lee and Jamie Lee was also visiting.

9th

Gill says she had a seizure about 1-00am. When she came round Sally the lady in the bed opposite was comforting her. I arrived up at the hospital at 10-15am as Gill and I had a joint appointment to see Jo her psychologist. The meeting went well with Jo saying that she would write to our GP Dr Mehta, she also said that she would try to have a meeting with Gills neurologist sooner rather than later to discuss whether Gill could have more tests for epilepsy or some associated complaint. She also said that if Gill was still in on Wednesday (Jo's away on Monday and Tuesday) she would come and visit Gill again. She said that if Gill was home she would phone her or send a letter. Jo only does Hospital patients. I left the ward about 12 noon and will be back again for the evening visiting at 6-30pm. Arrived at 6-30pm Lindsay and Tracy arrived about 7-00pm. Gill says she's had a busy day and is quiet tired and she hasn't had a seizure all day. Hope you have a really good nights sleep. Love you. Gill had a seizure about 11-00pm

10th

Gill has had 3 seizures today at 3-00am, 1-05pm and 1-20pm. She was asleep when I arrived at 2-00pm and woke at 2-10pm. she said that her catheter was removed this morning and she had had no monsters after the seizures. She went for a wee, good start to the catheter being out. Gill was getting a lot of stomach pain as she was on large doses of senapod type medication to make her go. Lindsay, Tracy, Jay Jay, Tommy Lee and Jamie Lee visited for about 30 minutes which was long enough for Gill. I arrived for the evening visiting at 6-30pm. Her friend Pilate's John visited her at 7-20pm. Gill is very tired today so we left a bit earlier.

11th

I arrived at visiting at 2-00pm and Gill was laid nearly flat in the bed, she said that she had had quiet an eventful early afternoon. Just after lunch at about 12-30pm she was sat out in her chair, and had been all morning, she fell asleep, dropped forward hit her head on the table and then hit her head on the floor. When she hit her head on the table it made quite a noise and everyone in her bay heard it, her ward friends Sally and Anne rushed to help her and called for a nurse. She was helped back into bed and the nurse checked her over then called for the Doctor who examined Gill. The Doctor said she had bumps to the front and back of her head and was to stay in bed for the rest of the day, The nurse did checks and obs on her every hour up to about teatime with everything being okay. I visited in the evening and Gill was okay but still had a headache and was very tired. Importantly she said that she hadn't had any seizures today. I hope she is turning the corner.

12th

Well it Monday again and I hope the last week she is in Hospital. Visited Gill at 2-00pm and she said that she hasn't had any seizures today. GREAT. She did have a bump on the back of her head and a bit of a bruise on her forehead from yesterdays fall. She said she had her breakfast sat in her chair but had been told by the nurses that she was to be back in bed before 11-00am. Gill said that a neurologist had visited her and that they were going to do further tests either while she was in Hospital or as an out patient, depending on when she was going home. Gill says that when she walks to the loo, and the nurses have to walk with her, she is very shaky on her feet. She is also complaining that because of all he senapod type medication that her bum is red raw and quite painful. Gill spoke to Andrew, our youngest son who lives in Amsterdam, on Skype this afternoon. Her ward friend Sally was discharged this afternoon and has left Gill all her details. When Gill is well she's going to spend a day with Sally who has horses on the farm where she lives. Stay well Sally. Lindsay and I visited in the evening and Gill is still very tired and shaky on her feet and has a headache, she decided to stay in bed since 11-00am and Gill said because of yesterdays fall the physios haven't been to her today but have smiled and winked at her every time they have walked passed her bed. No seizures all day again.



13th


Gill had a seizure at 2-10am. In the morning she had a little walk, using her frame, with the physios but felt very shaky. All her joints and muscles ache again today and she is feeling very tired still. While I was at visiting this afternoon Helen and Chris arrived to see Gill which brightened her up a bit. In the evening while visiting with Lindsay and Tracy one of her psychologists, Amie, arrived for a chat but said she would try to get back later if not tomorrow. During the later evening Gill lost her electric bed to an elderly patient who was in more need of it. Gill was disappointed to get an older type one with no footplate.

14th

In the early hours Gill had a seizure and came out of it with her legs hanging over the end of the bed. I wonder if the change of bed type caused it as she was worried about dropping off the end of it. She said she sat out of bed from before breakfast until about 11-15am. Jo her psychologist spoke to her today for about 30 minutes and said she would come back to see Gill on Friday. A Junior Doctor had asked Gill for a chat and answered many questions he put to her. I arrived for visiting at 2-00pm to find Gill asleep. At about 2-10pm she had 2 small seizures 1 after the other lasting about 10 to 15 seconds each. She seems very tired today, probably with all the elderly patients around her with one in particular up and about every few minutes disturbing her sleep patterns. While I was visiting tonight Lindsay, Tracy, Jay Jay, Tommy Lee and Jamie Lee came to visit Gill, this always leaves her a bit happier.

15th

Gill's new Doctor visited her this morning and said she could be home in the next day or two. Me personally, I don't think she's ready for home yet, probably early next week and Lindsay thinks the same. Gill had a load of blood tests this morning and Jo had said that she wants a care plan put into action before Gill leaves the hospital. Gill says that she is also expecting occupational health to visit her soon. I arrived for visiting at 2-0pm as usual and Gill said that the nurse had agreed to me pushing Gill in a wheelchair so she could get some fresh air and sun as it was a lovely day. We sat in the sun for about 15minutes and Gill really enjoyed it. Both Lindsay and I visited her in the evening.


           Bruise from when I fell asleep and hit the table and floor.




 Some of my many patches and bruises.


16th

Gill had had a seizure at about 1-10pm and because this different bed didn't have a foot board she ended up on the floor at the end of the bed causing more dressings to her left knee, hip, elbow and left side of her face and swelling under her her eye. Gill of course was very upset when I arrived at 2-00pm, she was very very sore and had 2 lots of Oromorph for the pain. She also said that the Doctors were going to discharge her on Monday 19th which she was very pleased about. The lady who had taken Gill's electric bed had gone home so while the nurse was applying Gills dressings after visiting had finished, Gill asked her if she could have the bed back and the nurse said that it had already been agreed that she was to get the bed back, but because they were very busy it could be later in the day but definitely before bedtime. Jo her Psychologist came to visit Gill at about 3-00pm for a chat which lasted about 30 minutes, she said she would come again on Tuesday if Gill was still in. True to the nurses word her bed was swapped over about 7-00pm and a big smile covered Gill's face, she feels a lot safer in this bed. At about 7-15pm Lindsay, Tracy, Jay Jay, Tommy Lee and Jamie Lee arrived they were also pleased that Gill had got her bed back. Hope you have a better nights sleep. Love you


17th


I'm not visiting this afternoon as I have a Charity Meeting, its only the 3rd session I have missed but Lindsay, Tracy and Selina were seeing her this afternoon. Selina had done a charity tandem parachute jump this morning and Gill was disappointed she couldn't go to watch. I visited this evening and Gill looks and sounds quite with it, she says she thinks its her best day so far, I hope that's not tempting fate. No seizures since the early hours of yesterday morning. 

Selina, her husband Lee and Lindsay came to visit Gill this afternoon after Selina had done a tandem parachute jump for the MIND charity. She showed Gill photos of the jump and she spoke a lot about it, Gill was very pleased for her but also a bit jealous as its something Gill's always wanted to do.




.
 Be for the jump.






 Coming in to land.


 Well done Selina.


18th

Talk about tempting fate, late last night Gill had a seizure in the bathroom, she's really made a mess of herself. Huge swellings and grazes to her left knee, grazes on left ankle, left hip, left arm, left shoulder but the worst is her head there's a dressing covering all the front of her swollen forehead bad grazes going into her hair line, swelling over both eyes with the left eye being closed and the right eye nearly shut, the bridge of her nose and all the left side of her forehead and grazes on her finger joints. She could have been there for around an hour as the nurses were doing there drug rounds and the other patients in her bay aren't really very helpful or with it at all as old or in bed. Most if not all would have bean asleep. So she's had no help from them since Sally left.

 Eyes hardly open.


Pictures from after the bathroom accident. More like a car crash.




Thank you Paul for your side of the Hospital stay now I am able to I will tell my part. 

I could have OROMORPTH at last, it was not given earlier because it can cover up things if I was getting worse. Went to sleep I did not wake till 11.15am. A nurse washed me and I sat out a bit but spent most of the day in bed. I felt like I had bean beaten up. Everywhere hurt. I don't think the toilet is the best place to have a seizure. The floor is non slip and like sand paper. 

When Paul arrived to visit he could hardly believe it. Lindsay and Tracy faces said it all.
 
19th 

Wayne arrived in Lincoln about 11-30pm.
My left eye closed completely, right one just a little slit. I feel very sore everywhere. I walked with the physios a bit shaky but safe enough if I can do the stairs I can go home. Stairs were no problem.

The neurologist came to see me and Paul and said I had no control over my seizures. He gave us both advise and was pleased the way I was doing. Very tiring day. Not home today but tomorrow if all still good. I will get to see Wayne a bit more. He is only here for the day as he called in on his way back from London as his companion lives in Lincoln so it worked out well. There was a surprise visit from Sally who had had to have a check up at the Hospital. She was surprised to see Gill in the state she was in and said, what have you been doing I only left you a week ago. Sally and her mum stopped for about an hour. We were both pleased to see them.


20th 

Happy days Gills coming home from Hospital today. I will be picking her up at the afternoon visiting session

Home today like Paul said, both eyes open not fully but more than they were. I still have a bad headache and everywhere hurts, 11 dressings still on. Paul came at visiting time with Wayne so that was good. I think Wayne was a little shocked at the mess I had made of myself. Bought 2 frames to walk with upstairs and down.
Paul bought the staff a load of biscuits and sweets to thank them for caring for me.
On arriving home Summer went mad lots of high fives and kisses she hardly left me all night. I missed her so much. So good to be home sat in my own chair. Went to bed the same time as Paul about 1-00am, as I am not to be on my own yet, this is something that has not happened for a long time because of my insomnia. I laid awake for a long time different bed too hot and pain. I did get some sleep though.

21st 

I had hoped for a better night but it was not to be. Paul said I was talking about monsters as well. Probably those I see when I hallucinate. A day of resting, sleep in the afternoon as the Doctors had said. No appetite though. I got weighed 7 stone 12 pounds. I had just about gained the weight back from last time as well. Still a lot of pain from the wounds I have received while having the seizures. 

22nd

Much the same as yesterday. Paul removed some of the dressing including the one off my forehead. Very sore but healing well. Lots of cuts in my scalp as well.
 
 
 
 
Only 6 dressing left now. Ness came round to see me with little Emmie, she brought me some roses two days ago and told Paul she would be round. I think she was a bit surprised how much I had hurt myself this time.
I had a bath with Paul's help it was so nice. 

23rd

Bit better night but I had two small seizures in the night. Paul woke up so I was alright. I went back to sleep after they had calmed down. I rang Ann and Sally the ones that looked after while I was in hospital. Also later I spoke to Ben next door he is doing quite good. I got a phone call from Bev (Beeston) asking me how I was. 
I sat outside in the sun as well as it was a very warm day. 
  
24th

Lindsay is here today with all the family so good to see them all. They did come to visit in hospital but not able to stay long as Jamie-Lee gets a bit noisy. Also its not really a place for children either. I loved them coming up. After they had gone I had a sleep. Another bath, this time with hair wash, my hairs not bean washed for five weeks. Felt a bit sore with all the cuts but nice all the same.. 
Paul changed the dressings again I have gained one. I think I might have rubbed it while asleep. I am healing well.

25th

I feel very tired and ache a lot. I think my body is wanting to be on the move. Sat outside again Paul planted the tomato plants in the greenhouse. Next doors had a BBQ and gave us a shish kebab each, very nice it was too. Another sleep and I sent a few emails. Nice to be home and doing what I want, well not quite but its better than hospital. I can now drink hot drinks without a straw. My mouth was very bad with sore and bites to my tongue.

26th

Another seizure during the night. I counted up all my sores and grazes and there are 34 of them from this hospital stay. That does not include my neck or face.

27th

Another small seizure in the night. Otherwise I think I am doing alright, still using the walking frame but not all the time. I got weighed and have lost 2 more pounds, 7 stone 10 pounds now. The  less I have bean for a long time. More than a stone lost this time. I'm drinking build up drinks. No need Weight Watchers- could do with Weight Gainers I think
I went round to see Ben with help from Paul he is looking quite well and coping I think with out Cilia, probably better than me. Even though her bed and some oxygen things have gone I could still see her in bed. He has a good family so they help him a lot as he is in a wheelchair all the time. He reminds me of my own Dad a lot.

28th

No seizures in the night much the same day as yesterday. My friend John came round to see me which was good. He came to see me a lot in hospital as well. I am getting stronger as well and starting to do little things like making a cup tea. Bath later and dressing changed only 2 now on left foot.

29th

Not a good night with sleep, apart from that I feel not too bad.I'm bringing my blog up to date and resting. Getting healed up and stronger by the day. I have not even got dressed yet as it hurts. Its not like I am going anywhere.  Paul still wants me to go to bed the same time as him which is understandable. As he is scared I will have a seizure down stairs. I put a pillow under the mattress to lift it slightly as the bed in the ward was mostly raised up apart from when I had another seizure.



30th

Weird but I was very cold last night I felt like I was outside on a cold night in my pyjamas. Paul felt me and said I was hot not cold. he still put a blanket over me. RSD sending the wrong messages again
As I said yesterday still not good nights sleep, hopefully it will come. 
Paul is looking after me well and should be proud of himself. Thank you very much. Summer also protecting me as well in the only way she knows how with her love.

The next lot of pictures are to show how well I have healed since all the damage that occurred while having the seizures




 






 

  




31st

Not another good night. Cold hot all the time. Paul said I had like a small seizure in my sleep just my legs going like running kicking, about 2am. I know I was still awake at 1.30am. I was not aware of this at all. I had a bath this morning, and got dressed for the first time since 22nd April. Everything is a little bit big, BAGGY PANTS. I have lost about a stone in weight.


Tracy phoned up and asked if we wanted a K.F.C for dinner. I said yes I had a burger and Paul had a boxed meal. Very nice too I enjoyed it. Thank you Tracy. After dinner we sat outside a bit and Jamie-Lee picked the flowers and took them to Grandad. She was very funny. The boys were at a party so we did not see them today.

A better day today I have not used the frame to walk with at all 7.00pm.



I fear sometimes for my future as how much more of this my body can take. Paul said this has bean the worst and most violent of all the times in hospital.
Lots of people have sent wishes and asked about me thanks to you all. They meant a lot to me. Also everyone who came to visit me. They helped me keep sane. 
I hope you all have had a better month than me. See you next time hopefully with a happier blog.
Love Gill. 

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