SEPTEMBER STILL GOING GOOD. (or not)

September 1st

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.

 
Jamie was so tired she fell asleep eating her tea. Lindsay put her to bed about 7pm thinking she might go all night.
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, they are picking him up tomorrow. I asked why he did not have a collar on, they said he had a saw neck something like an absess. 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 laterit 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

Pilates 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

At 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. 

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. 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. 

                                                 pictures will be added at a later date

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.


                                                  pictures will be added at a later date




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 apologized 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 catheteer. See is allergict to normal ones so a special one has to be found. The nurse attempted to fit the catheteer 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 seized 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.

August - Back in top gear. 150 blogs.

I am including the last two days of July in this blog because, Paul and I went to Halifax to see Wayne on his Birthday and stopped a few days.... 

July 30th

Happy Birthday Wayne. We are traveling to Halifax to see Wayne dropping off at Lindsay's first as Summer is stopping there while we are away. The journey going was better than a lot of previous times. In fact Paul had bean going on his own because it caused me too much pain and discomfort to go. We stopped about half way for a break, continuing on we arrived for dinner. Wayne is well, he undid his presents and cards he was pleased with them all. We are getting him a table and chair set for his garden when it is finished being sorted out. His garden has become a bit, well a lot over grown. Too much for him to cope with on his own. So Paul and I are helping him.

31st

Rain over night and still quite dull. Paul said my legs and body were jumping in the night and he thought I was going to have a seizure. No I am good and feeling ready to start this garden today there is a lot of ivy wrapped round the trees and shrubs, it's hard to remove.


 Pictures before we started, Wayne did some work last week.



 Getting some where I think, a path has appeared.





Paul jet washed the patio as well. Beginning to look like a garden again.We all worked hard and got quite a bit done but there is a lot more left to do. We uncovered three planters that Wayne did not know were there. I think Paul took over twenty bags of rubbish to the dump. I love doing the garden especially when you can see a big improvement. We have made a good start to it.

We are going out to a Chinese buffet place tonight for a meal. We have bean before and its very good.
After stuffing ourselves and taking a few pictures we set off back to Wayne's. We had a few words with Andrew on Skype he is doing well.We just sat and talked for a while and watched television.


Happy Birthday Wayne.
Wayne, Paul and of course me.
I think I deserved this.

Timmy in the tent Wayne made for him.


1st August

A lot of rain over night. the garden looks even better this morning. Hopefully when it is all done it will look better still.
We are heading into Halifax today for a few things. The shopping tired me out and made me hurt. After a good rest and some tablets we were ready to head back to Lincoln. The journey was good the tablets taken before hand helped. We called for chips on the way home and a sausage for Summer. She had bean dropped off by Lindsay and Tracy. They are going to Brighton for the weekend with Selina and Tracy's sister Janet. Hope they have a good time. Very tired later I had a bath this tends to help. We got Summer a toy, a raccoon, as its her Birthday on Saturday. This squeaked a lot and she loved it. The rest of the night sat with Summer.


2nd

Happy Birthday Summer 4 today I can hardly believe she is 4 years old. She is still very much a pup.
At night time I think she must have had a party because things were moved around and my Teddy's were on the floor.


Just chilling on my Birthday.


4th August

Doctor Mehta today to get blood results. They are good, the first time for ages my red blood count is in double figures, only just though, eleven. Everything else is good too. He said I look a lot better than last time when he saw me, just after coming home from hospital. I asked him about stopping DULUXATINE he said it would be better if I kept that, and reduced the GABERPENTIN slowly.

He asked if I had started running yet (he knows me too well). Not yet I said, he has no problems with me running either. I would love to be able too but as Wietse used to say- BABY STEPS GILL, BABY STEPS. I can still dream, even though most people say I am mad to even think about it at all. Well I am totally insane then. I am feeling a lot better I don't know if its the weather, its the DULUXATINE or the Acupuncture, or because I'm sleeping better now, or just the RSD playing with me, lulling me in to false pretences, I don't know. I do know I like it and I will make the best of it while it lasts.

Paul and I are out for the day as we are going to see Bev at Beeston. We got her flowers and a cream cake to eat with our cup of tea. We sat in the garden as it was warm and sunny. After we were refreshed, two teas and a piece of cake each we set off to Attenborough, a nature reserve its a very peaceful place close by with wildlife a plenty.  http://www.attenboroughnaturecentre.co.uk/  A lot of walking by us all, we had dinner in the cafe a hot Cornish pastie each plus a pot of tea. A most enjoyable day Paul enjoyed it too. A bit of back and hip pain but nothing tablets did not help with.





 A few of the residents.
 Bev and I.
 Me.
Bev.
Thank you very much for a lovely day.


5th

A fair sleep very tired last night. Today I am reducing the GABERPENTIN down again I have already bean doing this. In the hospital I took six a day then four, now down to three. One morning and two at night. I do hope the DULUXATINE will work for me instead. Less tablets the better.

I am helping out with next doors garden as it has become overgrown as well, it seems to be gardeners world at the moment. I love it though, working outside is loads better than being in the  house.

7th

I have had a bad head for the last two days. I think the stormy weather has a lot to do with it. Going to see Lindsay at her house today. Nice to see Suey as well. Lindsay walked down with all the family to meet me. They were all shouting when they saw me. Jamie-Lee the loudest. I had a nice day there Tracy hurt her back at Brighton so is off work.

8th

Open Day at the local football ground and fire station. Mostly charity stalls. Lots of things to see and do. Jay-Jay sat in a Audi sports car and said this is the car I am going to have when I get older. I said you will need a good job then. Tommy-Lee and Jay-Jay had a go at scoring a goal and Jay-Jay managed it but Tommy-Lee just missed. They both got a prize though. We came back and I cooked burgers and sausages for dinner. They were very good. A good day. I ached a lot but it was worth it. I hope they raised a lot of money.

10th

It's my brother David's birthday today so we are going to see him and his wife Bev. He is very busy at the moment, he has a landscape gardening business. Only three people work there, David doing most of it himself.  

11th

Cleaning up downstairs today. this is the first time I have done it all on my own I usually help Paul.
I managed well. I am, I think back to my normal self now. I just hope it stops that way. I have spent too much time in Hospital this year. With RSD you never know, good one minute bad the next.

12th

Lindsay came round with everyone. I gave Jamie-Lee the little pram I got her last year from a car boot sale. She loved it, I put a baby doll in and she pushed it up and down for ages taking out baby and talking to her. Jamie-Lee kept looking at me saying thank you Nanny. The boys wanted sausages and burgers again so that's what we had. They have very healthy appetites so does Jamie-Lee. Another good day. Quite a bit more pain though, the weather is not as warm as it was so I think this might be a major factor to the pain. Shoulders and head very tender. Later on at night my legs hurt like someone was sitting on them, I could not get comfortable at all no matter how I placed my legs. This happens a lot, I think it could be part of the complicated RSD curse.

13th

The weather has turned a little cooler especially at night. This year has bean a good summer though I have missed quite a lot of it. I am going into town today, I have a few things to get. I have missed doing this just looking around, no rush. Walking in and probably bus back. My body aches today all the joints and still the headache. FIBROMYALGIA and possibly CHRONIC FATIGUE I think. As you know there is no pain relief from sitting, just the opposite for me.


14th

I had a lay in today, gone nine when I got up. A day in doing the bedrooms they don't take too much doing. Paul is out so just me and Pup. Night time started knitting a scarf for a present. Bed a bit later tonight I have bean trying to stick to a 2-00am bed time as my sleep is quite good at the moment.

15th

What did I say last night, did I upset someone  BAD-- PAIN, legs burning and sweating, joints would not calm down despite extra tablets. A headache from hell. Just the RSD saying you have not got rid of me yet!

 

This is Tabby cat he comes to see us a lot. Brother of Ginge- he would not let Summer in side and when she tried to get in, he chased her. Poor Summer, Tabby is a big cat and will be nice to Summer, then strike out with his paw. Later Summer was a bit dubious when she went for a wee looking all around as if to say has he gone?


Carol my friend from the running club came to see me. She was quite amazed at what had bean happening to me. She said I look well now so does she.
Later on in the day Paul's Mum and Dad came to see us. They have bean on holiday and brought us a gift, a solar powered owl that you put in the window and it moves from side to side. This sounds like a ticking clock, not to every ones taste but I like them.  Bit more knitting later. Still painful joints.
Before I went to bed I took BECLOFEN and IBRUES.


16th

A better night but I was fairly drugged up. Its a bit colder here, not RSD friendly. Pain wise more than usual, joints again and dropping things as well. This could be a bit to do the BECLOFEN as its a muscle relaxant.

18th

Today is the day I have bean looking forward to for ages. Paul and I are going to Sally's house. She has horses. She is a very good rider and won load of medals and rosettes. Hopefully I am going to ride one. The last time I was on a horse, never as far as I know, unless a cart horse counts. I was about nine. The horse is called Pepper quite a large horse too. I got on and looked down, its a long way to the floor. Sally said look between the ears and then its not as high looking. I did this and it works. Sally and her mum said how to sit and hold on. Quite important I think. Sally took the reins and led me round. This felt very good I was quite relaxed.

 
  Pepper.

Introducing me to Pepper.
Already to go.

Sally showing me how its done.
Getting on is not that easy. Sally's Mum (Mo) helping me.

I am on, looks a long way down.
And we're off.
 No jumps today.

 Look no hands good balance Sally said.

Sally asked if I wanted to trot and of course I said yes. Again Sally showed me how to lift my bum off the saddle and lean forward on to Pepper. Its oh so good I didn't really want to get off. They both said I was a natural rider. I was so pleased, another thing I could take up and look forward to. I felt so relaxed, something I have not felt for a long time. Thank you Sally, Mo, and of course Pepper who without him this would not be possible.

 Sally, Pepper and me

After tea and toasted home made bread, we set off home. A most enjoyable day. I hope there will be plenty more too. I was told I might ache tomorrow, I don't care if I do it will have bean worth it. 


19th

Good no extra pain so far, I do hope I can go horse riding around here as Sally lives a hour away. I will go to see Sally again and one day soon go for a proper ride with her.
Running will be my first love and soon I hope to start or at least try again but horse riding is no impact on my legs so better for me. Impact on my bum maybe though. My RSD foot hurts but whether that's anything to do with the riding is any body's guess.

20th

Still no extra aches and pains.  I am back at Pilates today, the chair one, Jo thought it would before the best. I still hope to get back to my class though at a later date. Pilates went very well I manged good a few new moves as well. I stood to do a lot of the moves as I find it better.
John my friend came round in afternoon, He is doing well always nice to see him. Later a bit of knitting and writing this blog.

21st

Rubbish night sleep I had bean bitten by mosquitoes during the day on my head and neck so they were playing me up. Before I went to bed my legs and most of my joints hurt. I could not get comfortable at all so I decided to go to bed early, about one. I still could not settle any better. I got hot then started to shake, by now I realised they were withdrawal symptoms. I thought I had taken my tablets just before 10-00pm. I had not these were IBRUES I took for the extra pain. I went back down stairs and sure enough there they were. I took them three and a half hours late. I went back to bed but did not settle for ages going to sleep about four am.  The trouble with Morphine is you have to take it at the right time or else my body starts to panic.

We are going into town later today, I feel very tired but that will wear off soon. I bought a summer dressing gown and a new t shirt.

23rd

Fair night, still more pain than I would like. Lindsay is here on her own, the children are at there Dads today. So a quite day, it seemed weird no little voices around.

We are heading off to Wayne's after Paul's finished at the football. Summer is going to Lindsay's
while we are away so she will have fun with Suey as usual. The journey was good going to Wayne's stopping half way for a drink. It was nearly dark when we arrived and just in time for a Chinese I think. After a good feed we watched television for a while. Paul went to bed and Wayne talked for a while.

24th

Good nights sleep. Hopefully doing the garden again today there is much to do, loads of brambles and enough ivy for the whole street, this is wrapped round the trees and shrubs along with the ivy. More like a jungle. I am sure a lot more has grow since we were here last. Made a good start filled up 28 bags of rubbish. Paul took this to the tip. Wayne and I also had a bonfire which would have added another 7-10 more bags.


How the garden looked last time.

Wayne in work Mode.
  Some of the many bags we filled over 80 bags went to the skip.
 View of Wayne's garden from the road.

Wayne's house from the garden.

The bonfire beginning to take hold.
 Going well now, the flames scorched a tree.
 
 A long hard day.

We all went for a well deserves meal out, a Chinese of course. I was well ready for it as well.

26th 

More work on the garden, Wayne had to go to work so just Paul and I. Most of yesterday it rained so no work at all. We both worked very hard and got a lot done. My arms are covered in bites and scrapes plus a lot of bruises. I am surprised where I have got bites too as only my arms were uncovered on the first day. They feel very sore too.

 We did this.
  Wayne was amazed how much more we got done while he was at work.
 
 Paul and I with more bags.

Pity we did not have time to finish it all. Out for a meal at Grindo's a Mexican place Wayne's treat for doing the garden for him. Thank you Wayne. I enjoyed this very much.

 My food I ate every bit.
 
 Wayne on cocktails.
Paul on coke.
My pudding- also all eaten not shared, no never!!

  Wayne and and I.


    The tower house near Wayne's.

A long day but so good to look at what we have achieved.
We sat and watched a film, titled Non stop, a thriller set on a plane, then Disney's Frozen film both very enjoyable.

27th

Time to head off home to Lincoln and say goodbye to Timmy cat and Halifax. We also said goodbye to Wayne. The journey was good going home we stopped once. We decided to go to Lindsay to pick up Summer after a dinner of chips for everyone. Summer went crazy so did Suey as well. Jamie-Lee did not want us to take her home. The boys were pleased to see us too. Nearly the end of the school holidays so they are playing out as much as they can, much to Jamie-Lee annoyance. We left Lindsay and went home. Nice to be back, Summer shot out in to the garden to see if anyone had bean out there. She was a bit unsettled later I think she missed the children. I took her for a walk that calmed her down.

28th

Rest day today, after all I don't want too much pain setting off the seizures again and end up in hospital. Oh no-- Nice to be back on the common for Summers walk. Very peaceful.
I am having my hair cut tonight by Helen my usual hairdresser. Looking at my last picture with Wayne at Gringos I think its about time. My hair looked good as usual.

29th

I have bean reducing my GABERPENTIN bit by bit I now take one in the morning and one at night.
This is going quite well I think, more about that at the end of this blog.
We went to see Pam my sister in law as it was her birthday yesterday. After that into town, quite a lot to get today Tommy-Lees and Jamie-Lees birthday very soon, 8th September.
A very painful day with my legs, the left one has bean very swollen because of a bite. I was a bit worried it was the RSD spreading again. The other leg's more affected by RSD, was painful too but only in a way RSD can be. A lot of joint pain again. I took IBRUES and the pain calmed a bit. We got most of the things we wanted so headed off home. Summer was waiting for us.


I have bean on DULOXETINE for a while now 6th of May and I really do think it helps with pain most of the time. Just 30mg in the morning. That is why I am cutting down my GABERPENTIN then stopping all together. I will know then how well DULOXETINE is working. After all one tablet is better than six a day I am sure you will agree. The less the better.

A good month this time with a lot happening. Horse ridding, gardening and meals out. I hope it keeps up I like this sort of good times a lot better. I hope thing are good for you all, and are keeping as well as can be.  Love Gill.

 This is my 150 blog so far,  I think that's pretty good about a nasty thing called RSD, not all bad though- lots of family stuff to soften the hard times. All the best Love Gill.

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