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.
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.
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.
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 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.
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.
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.
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.
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.
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 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.
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.
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.
Bev my friend from Beeston rang and said would you like a visit tomorrow yes please I said. So something nice for tomorrow.
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.
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.
A good day I am feeling better today more like the fit me.
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.
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 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.
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.
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.
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.
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 !!
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.
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.
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.
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.
Andrews birthday 26 today. -HAPPY BIRTHDAY ANDREW- He liked all the presents he got.
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.
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.
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.
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.
I spoke to Andrew at night and he said he was tired too. He enjoyed his stay a lot.
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.
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.
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.
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.
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.
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.
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.
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.