September and already the leaves are turning brown and its getting colder and darker earlier.
I am at the Doctors today seeing Dr Hindocha to discuss a plan to try to stop me going into hospital when I have these seizures. He said it is not straight forward as I am not given any warning when they are going to start. Another meeting has bean arranged for Thursday for both Paul and I.
I am meeting Lindsay and family to get new school shoes for them. We have an appointment so it should be straight forward, it was they both got shoes they liked a choice of two pairs. Tommy-Lee really only needs one pair to choose from as he can never make up his mind. This time he was very quick. Jamie-Lee thought she was getting new shoes for school as well. I said no not this time you are a bit little for school NO she said. Dinner at McDonald's I only go in there if I'm with the boys. They got new lunch bags and a few other things as well.
On the way home we got a table and chair set for Jamie-Lee and she insisted on carrying it some of the way home, waving to every one in cars and on motor bikes most waved back.
A long day enjoyable though. Tracy came and picked them all up to go home all very tired but happy.
Lindsay and family in the car.
NO WAY Nanny.
About five minutes later.
3rd
Back to Pilates the chair one, I know its done sat down but it still works the muscles more than you would think. I do some of it stood up as well, a good session. Later I did feel a lot looser but still the dreaded joint pain. Also this headache goes but soon comes back again. Never mind it could be worse and it has bean. So I should not complain.
4th
On Summer's walk this morning we acquired a small dog. He ran across the road after Summer, she is in the last week of her season, but has had no interest from other dogs at all. We have not had the talk yet about the birds and bees. We walked around with him in my arms for a while looking for the owner but could not find them, even knocking on doors. So only one thing to do take him home with me. He is a very friendly dog and well looked after, but a bit thin.
He has Summer spare collar on.
I put Summer in the front room so he did not get to her.
I made sure Summer was happy, then put a collar and lead on him and decided to walk him around the area, hoping he would lead me to his home. No chance I think he enjoyed the walk too much. I asked a lot of people as well, they all thought he was cute but did not know him. I called at a friends and asked him if he had seen the dog before, no he had not. He walked the dog back with me as I was hurting a lot by now the dog pulled quite a bit, not like Summer. He suggested ringing the vets as they could scan him to find the owners. They would do this if I brought him in but Paul was not here and I had no way of getting there. Also they could not keep him there. I rang the police instead thinking that the owners would hopefully be looking for him. As soon as people knew about him the better. Lindsay my daughter put him on a few Internet sites facebook etc as well. The police put me in touch with the dog warden who came to pick him up. She thought she knew him from another time, and he was chipped. I do hope he finds the way home as he was very cute. I think Summer wanted him to stay as she cried when he left. There was a lot of interest in this little dog, everyone wished him well and hoped he would get home where he belonged.
The boys are back at school, Jamie-Lee thinks she is going too and Jay-Jay said she cried a bit when they left her. Tommy-Lee in now in the juniors. Jay-Jay is in his last year at this school, next year he will be at secondary school.
Looking very happy and smart in there new uniforms.
Jamie-Lee Too cool for school.
Paul and I saw Doctor Hindocha and discuss plans to keep me out of hospital. Paul is to try giving me LORAZEPAM if there is any warning to the seizures. Or if he thinks I am heading that way. He still phones an ambulance if they do not stop or if they are violent. I hope there will be no more so does the doctor and everyone else too, but I don't think that will happen. RSD IS CRUEL.
5th
Update on little dog- the owners have bean found, the children saw Lindsay's request on Face Book. Thank you for all your help Lindsay.
The dog has bean taken to the kennels, I went to see the owners and they are picking him up tomorrow. I asked why he did not have a collar on, they said he had a sore neck something like an abscess. He head butts the gate till it opens then escapes. His friend another Jack Russell has bean missing him and crying. I am so pleased they will all be back together tomorrow. Thank you to Joe for helping me out. Also to everyone that passed the Face book message on.
In town again today. I got Summer some dog chew sausages while Paul was sorting out the wasp man we have a nest of wasps. She ate all the ten sausages opening the packet herself. I thought it would make her sick but she ate all her tea as well. The little pig.
I feel a little strange today not quite with it at all. My hands are bananas hands again. I think my body is still getting over the last six months.
6th
Lindsay and family are all here today. Jamie-Lee is very vocal. The boys are on the computer, so very quite day from them.
I don't feel quite right today. My body is very hypersensitive and noise is getting to me. I still have the head pain. My neck is not good either. I have stopped taking the DULOXETINE Yes it worked, to a point but the side affects were not good- not feeling right like in a dream a lot of the time, response times also very off. My temperature is out of control, sweating then cold or both together. I know this is one of the things RSD does, but playing up more than normal. I do not feel like I am in charge of myself. As I have said before the RSD likes to think its the boss, but I think its had enough of that just lately now its my turn. So move over RSD.
7th
In town as its Jamie-Lees and Tommy-Lees Birthday tomorrow. So a few last bits to get. I have a lot of joint pain still, knees and elbows the worst but the rest are not too good either. I hope the walking will free them off a bit.
Later on in the night I yawned, something I don't do a lot of. My left shoulder went in to a massive spasm very painful I did my breathing Wietse's way and hoped it would soon pass about five minutes later it did. I was very hot and moved very cautiously for the rest of the night.
8th
Not a bad start to the day quite stiff around my neck and shoulders. Paul and I are going to a small out door auction. All sorts of things a lot of junk. A good day and we managed to get a few things we had bean looking out for at bargain prices.
Tommy-Lee is eight today and Jamie-Lee two. We are going to see them later. They were both very spoilt and got some very nice presents. Andrew rang from Amsterdam on Skype Jamie thought it was great and was convinced he was in my lap top. He got her a white Teddy which she called Teddy Andrew she carried it around the rest of the night and took him to bed with her. Also a pair of pyjamas we got her clothes and various bits. Andrew got Tommy-Lee a make your own rocket set he liked it a lot. He also spoke to Andrew. I think it was nice even though far away he was still able to see and speak with them on their special day. When he logged off Jamie-Lee kept shouting where are you. Jay-Jay got a few bits as well so he did not feel left out, it must be quite weird for him having his brother and sisters Birthdays together. Cake was next then bed for the children and home for us.
9th
Acupuncture, a new place and new students as well. I saw Beth who I have seen before. The needles hurt quite a lot, my knees were very bad. Another student sat in also and like all the other students was fascinated by the RSD. I had twenty needles in all, ten in my legs five in each, one in each foot, one in each elbow, one in each shoulder and two in each side of the back of my head. Quite a painful session but hopefully this will help the pain a little or may be a lot. My head and neck did feel better on the way home.
10th
Pilate's on my bike so that will be good. I always feel a sense of freedom either on my bike or running. I have got another session with the chair ones. You would not think a session like this would even exercise or tone up but it does. I still want to go back to my original class but Jo thinks I will benefit from another block with her. I enjoyed this week and the bike ride went well. I have an electric bike but I try to peddle when I can or a mixture of both. I have not bean on my bike at all this year, about ten mile round trip in all so I was pleased with myself.
We are taking Summer to Lindsay's as Paul and I are going away for a few days to Cheltenham an IA event. Felt very strange without her as we usually take her on the day.
11th
The Hotel the room was good quite big and a bath, not a shower a bath helps my pain. The bed was huge six foot our bed is four foot six. I had a short session of RAIKI. I have had this before with Wietse. The lady said I was giving off a lot of heat and my body was holding a lot of trauma. I told her briefly about the RSD and other things and she said it makes sense.
The huge bed.
The all, important cup of tea.
A nice clock close to the hotel Paul liked.
We had a very nice meal later soup, chicken dinner and apple pie and custard. Entertainment was dancing by some very fit young dancers. You were able to join them later to learn some of there slower dances. We did not just watched. A very nice night I enjoyed it. Also I was not suffering too much after the journey of about three hours. So a good day for me. Later my legs were jumping a lot.
12th
After quite a good nights sleep and a very nice breakfast, we packed up and loaded up the car. The hotel is set in a lot of ground and next to a golf park so we had a wander round. Very nice but could do with a new gardener, it's a bit over grown in places.
All pictures around the grounds- very nice view across the lake.
We then went to have a look around Cheltenham town. A bit of shopping, a nice place. After a subway dinner we set off home back to Lincoln. Not such a good journey home, hold ups and speed restrictions. A lot more pain than the going journey. Called at Lindsay's to pick Summer up she was so excited to see us. Jamie-Lee had her playing tea parties. She did not want Summer to go I said she can look after her again soon. We left her feeling happy.
15th
Fair night, but my legs were jumping a lot and still this temperature thing going crazy. My body can't make up its mind whether its hot or cold. I am sure this has something to do with the seizures.
We went to pick up a musical keyboard I had bought for the grandchildren. We popped in to see Helen my hairdresser. I forgot to pay her last time she did my hair. She did not even know either.
Wayne has gone on holiday for a few day to France. I hope he has a rest and enjoys himself.
16th
I spoke to Wayne he is tasting a lot of wine which he is pleased about.
Physio again I am seeing someone else today. As usual it started talking pulse, tongue stick out. The questions went on a while then I suddenly realised that I had bean booked in for a herbal appointment instead of a ACUE one. They were very apologetic I thought it was quite funny. The place is having a few problems buts its early days yet. The appointment was not wasted as they think I can be helped with their herbal mixtures. I was given oil to rub on my joints and a tincture to take in water. Hopefully this will help the pain a bit. It does not seem to matter how many tablets I take this joint pain does not go. On a low note I did not get my ACUE session. I need to come back tomorrow.
17th
Very hot in the night-- DAM this RSD just when you think things are going good it plays another card mostly an ace.
Pilates- On my bike again warm biking as well. A good session but I still miss the other group. I took the long way back and took advantage of the opportunity to use my bike.
Physio I saw Bell I have seen him before and he is good. Twenty needles in all, pretty much the same as last week. One needle put in my right RSD side leg, hurt a lot like bees stinging me. Henry (the tutor) tweaked it a bit but that was worse. The needle was taken out. The rest of the needles were better, some of them I had weird feeling and alsorts going on with in my body. My right foot spasmed up quite a lot. On the whole a good session. I have no appoints next week.
21st PAUL'S STORY
For a lot of Gill's regular viewers you will probably realise straight away that Gill isn't very well and yes unfortunately she is in hospital again.
Gill woke me up about 2-45am and asked me to get her a Lorazapan tablet, this is an anti seizure tablet, she took 2. At 3-00am she had a seizure which lasted about 15 seconds. At 3-01 she had a neck spasm. 3-03 a seizure lasting 10 seconds. 3-06 muscle spasms in her neck which affected her breathing and recovered within a minute. 3-10am seizure around 57 seconds, 3-12 around 30 seconds, 3-21 45 seconds, 3-30 neck spasms which affected her breathing again. 3-38 15 seconds straight into another one lasting 15 seconds and another lasting 15 seconds. At 3-40 she started having hallucinations and then a 10 second seizure. 3-49 a 45 second seizure, 4-06am 2 small seizures lasting about 10 seconds each one after the other. About 4-15am I decided to dial 999 for an ambulance, around 5 minutes later the paramedic arrived and before the ambulance crew arrived she had had 2 more seizures. Gill left for Hospital about 4-50am.
I arrived at A & E about 5-25am she had 2 more seizes and settled a bit by 6-10am. She kept waking every 10 minutes or so, in pain I think. Sometime well before 8-00am I sent Lindsay, our daughter, a message as not to wake her too early, At 9-15 I phoned our sons Wayne, who was on Holiday in London and Andrew who lives in Amsterdam. At about 9-30 Gill was with it enough for me to give her her morning tablets. At 9-45 she had a seizure lasting around 30 seconds. Lindsay and Tracy came up a bit later in the morning and they suggested I go home for a few hours sleep which I did. While I was away Gill was transferred to the AEU Ward. The rest of the day was basically more seizure and more whole body muscle spasms.
22nd
Throughout the day she had very many seizures and muscle spasms.
I didn't think the medical staff were treating Gill quick enough or it could of been the stress and pressure of watching my wife suffering and not been able to do anything about it, you feel so useless. I did something that I have never ever done before, I really lost my temper, I let Gill's Consultant, Doctors and the nurses have both barrels and I certainly vented my frustrations. I said to one of Gill's nurses that I have to leave the ward as I could do something I would really regret later, in a raging state I walked up and down the corridors until I cooled down and felt okay again. I went back onto the ward to see Gill and I apologised to the staff, Gill then had visits from the Consultant, Doctors and the nurses gave medication the Consultant had suggested.
This was not a very good day for Gill.
Dr Solinas came especially from Grantham Hospital, around 26 miles away to see Gill at around teatime. This really pleased Gill as she has a lot of respect for him.
23rd
Lindsay and I arrived at 10-30am and Gill was asleep, she was asleep most of the time until we left at about 2-00pm.
We both arrived back at the Hospital at 6-30pm. Gill had a few seizures and a large amount of full body spasms. While awake her pain and medication are making her talk and talk and talk stopping only for a breathe. There are now an awful lot of donkeys walking round on their front feet as she has talked their find legs off them. We left about 8-45pm.
24th
It's Wednesday and Lindsay and I arrived up at the Hospital at 10-20am. Gill was asleep and she woke around 10-45am. She said she had had a large number of seizures and full body spasms at about 6-00am. A Doctor called at 11-15am and mentioned to her about going home and Gill said yes when the seizures and spasms stopped. about 5 minutes later her nurse came up to her and said, right you can go home then, I said pardon, she said again Gill can go home then. I said oh no she isn't and I gave her my reasons. Her nurse, a sister, said well in that case we'll probably have to move her as this is a short stay unit, I replied I have no problem with that I didn't expect her to stay on this ward anyway. I said that Gill had been on Dixon ward on the last 2 occasions and they know her and have treated her really well so if there is any chance of her going there we would be very grateful. Gill said I'll go anywhere as long as it's not an old peoples ward and the sister assured her she wouldn't.
Towards lunchtime the nurse asked Gill if she wanted to sit up and try to have a bit of dinner as she hadn't eaten since Saturday teatime. Gill said yes but this proved to be a big mistake. Because of all her medication Gill had problems holding a fork or spoon so Lindsay started to feed her, she managed some swede and mash then said move the trolley I feel funny then the seizures and spasms started with a vengeance. The sister called for a Doctor, when Gill was able she speak to the Doctor and they decided that Gill would start Diazapan on a regular basis, but also giving Gill the option to refuse them when she thinks she's well enough to stop them. Gill started to settle about 1-10pm Lindsay and I went for a quick lunch and Gill was feeling a bit better when we arrived back at 1-35pm. Gill agreed that Lindsay and I could leave about 2-00pm and that we would be back at 6-30pm. When we arrived back on the ward the curtains were around her bed, oh no, I thought, the seizures must have started up again, her nurse approached us and said don't worry she's was moved to Dixon Ward this afternoon. YES, I know she'll be treated well there.
Gill says she was transferred to Dixon just after 2-00pm and a load of the nursing staff all new Gill and "welcomed" her back to the ward. As far as I'm concerned this is the best ward she could have been on. She's in side room 3 a small 10 foot square room with 2 openable windows, some fresh are for Gill and no noisy patients. Gill likes the room and seems happier and more relaxed but that could be the medication. The only down side is visiting is 2pm to 4pm and 6-30pm to 8-30pm.
25th
Gill says she had loads of seizures and spasms around 6-00am. I arrived on the ward at 2-00pm and Gill was sat up a bit but seemed in discomfort, she hadn't wee'd for 24 hours. Just before I left at 4-00pm Gill asked for a bedpan, she isn't well enough to get out of bed yet, but couldn't go, the nurse gave her a bladder scan and said it was over full and that they would have to fit a catheter. See is allergic to normal ones so a special one has to be found. The nurse attempted to fit the catheter but with the pressure in the full bladder it would go, another nurse tried but this caused her to wee naturally, over everywhere, spurting in all directions, the nurses said they had never seen so much wee come out of one person they were watching her bloated stomach go down, they then had the job of cleaning and changing her and the bedding as she was basically laid in a lake. Gill said she felt better after it and had no kidney pain. One of the Junior Doctors phoned me at home and asked many questions about Gill, no doctor had spoken to me like that before and I thanked him for that. Lindsay and I arrived about 6-30pm and Gill was looking and sounding the best she had been for a while. Gill said that they were going to move her from the side room to a bay so they could keep a better eye on her, she asked for a bed near a window side bed if possible
26th
Gill phoned me up about 8-30am this morning as it's my 60th Birthday today, and what would I really like for my birthday, easy, a year of no pain, no seizures, no spasms and a normal life for the woman I so love. I wish you were here with me and not in hospital my darling and yes tears are rolling down my cheeks.
I arrived at visiting at 2-00pm with the housekeeper and a few other singing "Happy Birthday to you", which was nice.
Gill said she had had some seizures and spasms in the early morning but nothing since. She said she has been very tired all day and you could tell by the way she was talking that she was on a lot of medication. The Junior Doctor asked to speak to me again, we went to a private room and we spoke about Gill for about 20 minutes and I told him all about Gill and my concerns. We then went back to
Gill and he spoke to her about my concerns and what we had said. He said that he would let her decide when she thought she was ready to go home and he assured her they wouldn't be changing any of her medication and if they thought about altering doses they would ask her thoughts about it first. Gill was very pleased about this at it has been a worry to her. We both thanked the Doctor for his kindness, thoughtfulness and his bedside manner, which has been sadly lacking at some of the Doctors who have seen Gill before, may I add not the nursing staff who have been great. Lindsay, Tracy and I arrived at visiting around and Gill still hasn't had a seizure or spasm since this morning, she is still very tired, I do hope she has a settled night.
27th
Same sort of day as yesterday I didn't visit in the afternoon, Lindsay did. I went in the evening but she was in a drugged state half asleep and half away with a few seizures in between. But a little better.
28th
Late last night and in the early morning she was looked after by a very nasty nurse and she spoke to Gill and said things to her that nobody should say to anyone. This was really upsetting Gill and it increased the amount of seizures. When the day staff came on duty Gill complained to a nurse about it and a sister came to interview her she said what this nasty nurse had said and done, the sister went to interview other patients in the bay for their comments and they all said the same as Gill. The Sister later said that the nasty nurse has been banned from Dixon Ward and will never work on there again.
Not a very good day for Gill, that nurse hasn't done her any good at all.
My mum and dad came to visit Gill this afternoon but within a short time Gill started having seizures and after quite a few they decided to go home. After quite a few seizures Gill lost her voice and was very worried about it and I said it was only the seizures and that after she had rested for a while her voice would come back, which it did. The rest of the day was much the same.
29th
Gill said that she had slept all night but woke up very tired aching and hurting everywhere. Early today the nursing staff suggested that she sit in her chair, Gill didn't think she was quite ready for it but did anyway. She hadn't been sat in it long when she had a load of seizures and ended up on the floor. The other patients in her bay buzzed for assistance. The very nice lady in the bed opposite is always looking out for her and has buzzed the nurse on a number of occasions, thank you. She was helped back to bed. A doctor was called and advised her to stay still for a few hours.
At this afternoons visit a consultant came to see her and suggest the they change one of her pain killers, Oromorth to Oxinorm as it is a bit stronger, Gill agreed to this. Shortly after she had some seizures and the Consultant came back to see her again. She had settled a bit towards visiting and one of her nurse washed and changed her nightie and also changes her bedding. Lindsay and I arrived at 6-30pm and it was again much the same with a few seizures. Gill had settled down by the time we were leaving and a nurse said she would keep her eye on her.
Her dressing count to date is both elbows, right knee, right foot with sponge type dressing and bandages on both ankles/feet and a graze on the right hand side of her head just in the hair line.
30th
Gill phoned me up this morning and said that she was feeling okay and that she thinks she had only a couple of seizures during the night and that she had slept reasonably well.
Her Doctor called to see her this morning and he told her to take as much rest as she could. There was no rush and she could recover in her own time and would leave Hospital only when she is ready to leave. She was in a lot of pain this afternoon and was quite weepy and also feeling sorry for herself which is not surprising what with all she goes through. She was also able to fight off a couple of possible seizures which could be a good sign.
All the best to you all and lets hope October is an improvement on the previous months. Paul
Gill has some photo's to add at a later date and will also make some written additions.
And from her Hospital bed she send love and best wishes to you all.
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