OCTOBER- OCTO-WORSER

OCTOBER

1st

Gill phoned a few times this morning saying that she had had a few seizures around 6-00am but was okay. After breakfast the nurses sat her out in a chair for a while but unfortunately she had a seizure and banged her head, the side of her right knee and her right forearm. I arrived for visiting at 2-00pm and Gill was fast asleep and looked really settled so I decided to let her sleep. She was still sound asleep at 3-20pm when I decided to leave, I wrote her a note and left it so she could read it. At 4-00pm Gill phoned me up, she was crying and really upset that I didn't wake her so I said that from now on I would wake her if she was asleep when I arrived. Lindsay and I visited her at 6-30pm and she was really tearful. She was also a bit down because her doctor said she'll be in for another week. She seemed reasonably cheerful when we left at 8-30pm.

2nd

At the 2-00pm visiting Gill said that she hadn't had a seizure since yesterday morning. Bruising has started to come out on the right side of her face and forehead and the side of her right knee. She has also developed Conjunctivitis in both eyes. She said she had sat out for about 20 minutes but everything hurts and she is feeling quite delicate today. In the evening her friend Pilates John came to visit.

3rd

Gill said she had about 17 seizures before 6-00am. Her Doctor had been to check her out and she was suffering from concussion and has to have bed rest. Her head is grazed, has been bleeding and has bumps and bruises, she is sleepy and drowsy

4th

Gill started Saturday morning with a few seizures, she had a few visitors this afternoon. Just after I got there her brother, David, arrived, then about 45 minutes later my sister Michelle and her hubby Pete arrived and David went home. Then Gill smiled as she could her our grand daughter Jamie Lee's head appeared around the curtain, Lindsay and Tracy were there as well. At evening visiting her hairdresser Helen came to see her. She was quite settled when we left

5th

Gill woke to find her left forearm and right knee was very badly bruised, really swollen and very very painful, the nurses had a look and the doctor was called, and he decided that an x-ray was in order. While Lindsay I was visiting her in the afternoon her Doctor came to see her and said there was no broken bones just very bad swelling and bruising, Gill was pleased there were no broken bones as she has osteoporosis.
Lindsay and I arrived at visiting at 6-30pm and Gill was fast asleep, it took us about 25 minutes to wake her up, she has told us to do this, I think its a mistake as she woke up in pain, had her 10mg of Oxinorm. She was in a shed load of pain, had 4 seizures and was hallucinating. The nurses gave her some more medication and when I left at 9-15pm she was just starting to settle.

I am so mixed up I don't really know what's real or what's fake more likely the tablets, very tired. (Gill's story) 

6th

Its Monday and the start of yet another week in hospital for Gill. She is tired and hurts and aches all over, her left forearm wasn't as bad as yesterday but her knee is still quite painful.She didn't have any seizures in the morning but about 2-55pm she had a couple of seizures after complaining of back pain and her ribcage feels like it is being crushed. When I arrived for the evening visiting I think the nurses had given happy pills to the patients in Gill's bay as they were all laughing and joking. Looking at Gill, who was sat up, her happy and smiling face bought a tear to my eye, it's a few weeks since she looked as happy, could it be because her friend Sally had been to see her and they spent a few hours together.....thank you Sally. Lindsay arrived a bit later along with both our grandsons, Jay Jay and Tommy Lee, more happy smiles from Gill. A good end to the day for a change

7th

Gill didn't think she had any seizures since yesterday afternoon, but is getting an awful lot of pain from her left forearm and right knee. One of the Hospital Chaplains called Jonathan went to see her this morning for a chat which she enjoyed. Gill went to the loo, actually in the toilet and not a bedpan for a change today, the first time in over a week and she said her ribcage had stopped hurting as much. At this afternoon visiting she was in a lot of pain and very tearful . When I arrived at the 6-30pm visiting Gill was in a deep sleep, she has always told me to wake her up and this took about an hour to do so. Could the deep sleep be because of the pain, her medication combined with her lack of appetite, or lack of night time rem sleep. I think waking her caused her to have 3 or 4 seizures and the nurses came and gave her her medication which helped. I again stopped for an extra half hour and she had settled a bit by the time I left at 9-00pm

8th

Gill seems fairly well today, she's sat up talking reasonably well, slightly slurred. She is still in a lot of pain. The bruising is spreading around her forearm and is changing as is the side of her right knee. it
is also changing on her head and face. She still isn't eating but is having some build up drinks and I'm taking in grapes and strawberries so she is getting some nutrients.

9th

Gill had a lot of pain during the night and was sat up in bed, she thinks she passed out and with a lot of force hit her head on the trolley table with a bang, this must of sounded bad as the nursing staff came running to her assistance and the doctor was called. The doctor checked on Gill every hour and she also had a load of seizures, so more cuts bumps and bruises. She is confined to bed rest again but Gill is determined to get out of bed tomorrow. Her Doctor came to see her at lunchtime and Gill said to him, will you listen to me, she told him in no uncertain terms that she didn't want to talk to a psychiatrist which he keeps pushing for, she told him the seizures started with pain and this had been witnessed by the nurses and the doctors. So after the chat, the doctor agreed and said that when she feels ready she can use the commode instead of a bedpan and this also includes sitting out of bed and when she is ready to stand and start to walk again. She said, finally he is listening to me. At the afternoon visiting I went to get her an ice cream lolly which she asked for. The Hospital Chaplain, Jonathan, came to chat to Gill, he really is a nice bloke and listens to what you are saying and he also remembers what you have said in the past. Gill seemed to settle as the day went on and at the evening visiting, Helen, Pilates John, Lindsay and I visited. To end the evening she seemed a bit more settled. I do hope tomorrow is a better day for her.       I Love You.

10th

I arrived at visiting at 2-00pm and Gill was in terrific pain with a spasm in her right leg from the tip of her toes to her groin and it had been like it for an hour. A lady patient in her bay does reflexology and she started working on her foot and an hour later all the muscles had relaxed, Gill was that relaxed she fell asleep. She was settled when I left at about 4-00pm. Gill had said that she had had a load of seizures in the early part of the day. I arrived back at visiting at 6-30pm and Gill said she had had an hour or two's sleep. Gill had a few seizures and was given oxinorm, she had a few more and she settled about 8-10pm.

11th

Gill said she woke up feeling good and had had a good nights sleep and that she had sat out of bed until about 10-15am. She went to the loo and did both she leaned forward, and she's not sure if she over balanced or passed out and bashed her head on the floor, she couldn't reach the alarm bell but a nurse came to check on her and found her on the floor. They did various tests including the eye and grip test. The Doctors also visited Gill and arranged for her to have a CT scan. Gill had some seizures while having the scan and a number of doctors went to help. A doctor and nurse accompanied Gill back to the ward, she was in and out of consciousness and also had a few more seizures. Gill was still able to get out of bed to use the commode, as she struggles with the bedpan, but a nurse stops with her. At lunchtime Gill decided to pass out and landed face first into her dinner and had gravy all over her face. At teatime she had a bit of a sandwich and some ice cream.

12th

It's Sunday and Gill's been in Hospital 3 weeks now. I arrived at visiting at 2-00pm and Gill was having a long seizure then went into a few more, she was given some oxinorm and after a while settled a bit. She's still having a tremendous amount of pain in her left arm and the Doctors decided to have it re x-ray'd and this happened about 3-00pm.  Gill said she didn't have a very good night and was in quite a bit of pain and one of the nurses though it was her fibromyalgia playing up.She has it too. Gill said that she had eaten all her dinner, the first time she had done this while being in hospital. Most of her bruising is finally starting to fade and hopefully she is starting to turn the corner. Her seizures we think are caused by pain and the pain in her arm is bringing on the seizures. At the evening visiting a lady Doctor called to say the results of the x-ray were clear and that she had really bad tissue damaged, the Doctors were really surprised that there wasn't any breaks or cracks in the bones. The Doctor said, after Gill suggested it, that the arm be bandaged and a splint fitted to help immobilize the arm and hopefully reducing the pain threshold.

13th

Gill says that she had had a rough night with her arm pain and that she had had a few seizures, she also had some seizures while I was visiting in the afternoon. I had been in town shopping in the morning as Gill wanted some new pyjamas and also a fleece blanket. This should be a laugh as when ever I get anything for Gill it's either the wrong size, the wrong colour, or the wrong material. If I buy Gill 6 items of clothing she usually takes 6 items of clothing back to change them for some reason or another. At Gills bedside I straight away said if there wrong I'll change them no problem. Shock horror, she really liked the fleece blanket and she also liked the pyjamas but still she still had to try them on which she did, they fitted, magic. I didn't get to the evening visiting tonight, its only the 4th time I missed it since she's been in. Lindsay, Tracy and the grand kids visited Gill tonight. Lindsay said Gill seemed good and didn't have any seizures and that they were trying to get something for Gill's arm as it's bandaged with a plastic splint type thing on it.

14th

I got a telephone call on my mobile at about 10-35am from Dixon Ward, you don't know how many different ideas all of them not good that go through your mind between the nurse saying, good morning this is Staff Nurse so and so (then all the bad thoughts) it nothing to worry about but Gill seems very confused and upset and asks if you can come and see her for a while. So I went up to see her and she was a bit more settled when I left her about an hour later and getting ready for lunch. She apologised as she thought I was already in the hospital working on Waddington Ward as I'm a volunteer on there.
She was asleep when I arrived at visiting at 2-00pm, I woke her and she seemed more relaxed, she said that she had eaten about half her dinner and all her pudding. There is a patient on her ward and that during most of the night had kept the other patients awake and really frightened another patient, Gill said she was ready to kill her apart from that she was going home today, Gill overheard this ladies doctor say that there was a problem with a blood test and she would have to stay in for another 48 hours, this really upset Gill and it really stressed her out.
Gill said a member of the pain clinic had been to see her and was really pleased with what they had to say as normally they just want to give her large doses of amatripoleen or something like that. They also said that if they couldn't help her then they would also refer her to a National Pain Centre in Bath.
A lady from occupational health called and put on a bandage and a splint glove over the part of Gill's left arm that had severe tissue damage from a few of the falls she has had. When I left at 4-00pm she was all settled and relaxed for a sleep. Lindsay and I arrived at visiting and she was really in a deep sleep, from just gone 4-00pm, and we couldn't wake her Pilates John arrived at 7-25pm and she was still away with the fairies and at 8-0pm we decided to leave. We left Gill a note. At about 8-35pm Gill phoned me and apologised for being asleep, typical Gill. Unfortunately Gills nurse woke her up for her 12 hour morphine tablet, hopefully she'll be able to get back to sleep.
Night night my darling.


15th

I woke to a chronic headache and pain just about everywhere. I asked for my OXINORM only to be told it had not bean written up yet. The pain team said it had bean all sorted out with the doctors. I could have nothing else as I'd already had my regular tablets. Guess what lots of seizures. I was crying and thumping the pillow and biting the sheet so not to scream out, a lot of pain, also wet the bed, all because someone had messed up big time causing me pain that was unnecessary. Three hours later I got my medicine
When the consultant came he knew I was mad with him as he had bean warned at the nurses station. I asked what went wrong he said his team were not here yesterday but one junior Doctor said they were and when he checked up he found they were in the ward when pain team came and spoke to them all. I asked him to apologise which he skirted round. I said I do not blame the younger Doctors as its the Consultant job. Again I asked him for an apology this time he admitted it was his fault. I shook his hand and said thank you. They all left, with big smiles on the young Doctors faces.(Gill's story)


16th

Seizures in the night, I woke to a very wet bed. I also had sores on my knee and right foot that were bleeding.
After a bed change and wash, the physio were here to see how I could walk. I did quite well walking but a lot of pain. OXINORM given. Rested the rest of the day. (Gill' story)


17th

Woke up feeling quite good, felt a bit sick but I did not say anything. Sat out in my chair for a while then had a seizure where I bashed myself about again, Back to bed.
Later I felt a lot better and I asked if I could go outside for a while with Paul when he came, after some decision they said yes but not for long. So nice to feel the sun and the wind on my face. Had a sleep after but felt good. Thank you Paul. (Gill's story)


18th

For only the fifth time that Gills been in Hospital I missed visiting this afternoon, I attended 2 of my Charity meetings in Dudley. Lindsay had been to see her in the afternoon. I did make it back for the last hour of the evening visiting. Gill was very tired and had not had any seizures. She had a very sore throat and a pain in her chest and thinks she has some sort of virus or infection.

19th

Sunday and she's been in hospital 4 weeks today. I arrived at visiting in the afternoon and Gill was feeling a bit better but still had a sore throat and chest. Lindsay Selina and Pilates John visited this afternoon. At the evening visiting Gill spoke to our eldest son on the phone.

20th

Barbara a good friend I had made was going to be moved to another ward and I got quite upset.
Seizure's in the night but Sonia said the nurses did very little to help not even held my hand. As I think I have said before when I am having seizure's I don't hear anything but as I am coming out of it I can hear voices and I like to hold a hand as to me it feels like I am back again and not in the wild seizure's world. Sonia often used to hold my hand and speak to me but she was told to go back to bed. Very scary on my own. Even more so if the monsters come as well. The Seizures were quite long ones about 10-11 minutes. (Gill's story)


21st

Gill had a really good day and looked the best she has been in the past 4 and a half weeks, she walked a bit, sat out a bit, had visits from Dr Gupta, a member of the pain team went to see her and stated that a Doctor from the pain team would definitely visit her and would offer Gill help and support for as long as she needs it and Gill started on a long list of questions.


Paul and I visited Barbara in her new ward. Very smart, own room on suite, she is going home tomorrow. All the best.(Gill's story)  


She also had visits from David and Bev, Lindsay, Tracy, Jay Jay, Tommy Lee, Jamie Lee and as usual I was there in the afternoon and evening.

22nd

A different day than Gill expected. The Doctor was supposed to come today, did he visit Gill, no. This is the same man who came to see Gill on Monday 22nd September her second day in Hospital and he said then that a member of the pain team would visit her tomorrow and he would see her the day after, Gills still waiting. Really fills you full of confidence doesn't it.
This really upset Gill to the point that between my 2 visits she had a few seizures and did more damage to her right ankle and right knee and both looked very sore and painful. Pilates John visited her in the afternoon. There was a very nice staff nurse on in the evening and Gill was going to have words with her about the pain team and I think Gill will be contacting the pain team and giving them a right rollicking

23rd

Not a good day for Gill today, she went to the pain clinic expecting them to give her some answers. The bloke who saw basically said that they couldn't help her. This really upset Gill and she shed a load of tears. I visited her at 2-00pm and Debbie who lives in our street also came to see her and this brightened her up for a while. Some time just before her teatime she had 4 seizures. I arrived at visiting and Gill was very drowsy, dropping off for a minute or two then walking. At about 6-55pm she fell asleep and at 7-50pm I called it a night and went home, leaving Gill a message.

24th

The day started off a bit funny, Gill's sent me a text message says she was feeling a bit better and asked me to get her some TUC biscuits but it was in a text language she doesn't use, I learnt later that her friend Sonia in the next bed sent it for her, I arrived at visiting at 2-00pm with Gill looking and sounding better than yesterday. A little later, Blue, a sister from the pain team saw Gill and we spoke at length about her pain and medication. It was agreed that Gill will start taking 30mg of Duloxatine, a tablet she finished taking about 6 weeks ago and that her morphine tablet Oxycodone/naloxone will be doubled in strength to 20mg in the morning and 20mg in the evening. Gill was pleased with this and was much happier when Blue left. As I was leaving the ward a junior Doctor spoke to me and asked if I would speak to a consultant on Monday afternoon. Gill started her doubled dose of Oxycodone/Naloxone this evening. At the evening visiting Gill seemed a lot happier. Pilates John also visited.

25th

Saturday and its now 5 weeks that Gill's been in Hospital, a record she doesn't want. Gill started her Duloxetine this morning. Gill is feeling the effects of the doubled dose of Oxycodone/Naloxone and Duloxetine today, she's feeling very tired and sleepy and drowsy all in one. While I was visiting this afternoon Gill walked using her frame to the loo and back about 20 yards, a very good sight to see. This proves to me that she's slowly on the mend. One of the better evening visiting sessions and again she walked to the loo and back.

26th

Bad start to the day for Gill, she had 2 seizures at about 2-15am but they lasted less than 2 minutes and not so violent I am told. She is again suffering the effects of the medication drowsy, tired and sleepy.

27th

Gill is again suffering the effects of the medication drowsy, tired and sleepy, wonder how long these effects will last. At the Afternoon visiting we had a meeting with her consultant Mr Mandel. It was decided that one of the Doctor will try to refer her to a Chronic Fatigue clinic in Grantham, Gill says that they have refused her before. It was also decided that she will be going home on Thursday 30th but has got to take it very steady. Tracy's birthday today so Tracy, Lindsay, Selina and I were at the visiting tonight and Gill gave Tracy her card and a present.

28th.

Visited Gill this afternoon and she looked very tired, she said that the physios had got her to do the stairs today and that she had sat out of bed until about 1-55pm, 5 minutes before I arrived. I personally think that was about an hour too long. Gill is complaining that her left arm, the one she had x-rays on twice and she had severe tissue damage on it, is very tender and painful and yet more bruising is starting to come out, we think that its because she using it with her frame so she can get about. When I left at 4-00pm Gill was settled for a sleep. I'm not visiting tonight and it will only be the 6th visiting session I have missed since she's been in Hospital. Lindsay went to see her instead, thanks Nin.

29th

At visiting this afternoon Gill  is very drowsy and soon gets very tired to the point of nearly dropping off to sleep as she's trying to talk to me. Gill says that she had 2 seizures at about 4-00am this morning one quiet lengthy. Gill friend, Sonia, in the next bed to Gill went home this afternoon and will be keeping in contact with Gill. Lindsay and I visited tonight and she agreed with me that we don't think Gills well enough to leave Hospital tomorrow and I went to have a chat with her Staff Nurse, and I told her of our concerns and she said that she was on in the morning and would make a comment on Gill's files and also have a word with the Doctor in the morning. I got the impression that she agreed with me in part. We left visiting a bit early so Gill could get some rest.

30th

Gill was supposed to go home today, did she or didn't she.................NO is the answer....
I had a private chat with one of Gill's Junior Doctors and he explained a lot and in layman's terms and he also said that he would put the plan down on paper. We chatted for about 20 minutes and we decided to give Gill a further 24 hours in Hospital. I went to tell Gill this and she was happy about it but would only be 100% happy when she was going through the ward doors. Gill seemed happier for the rest of the day knowing that she would be going home tomorrow.

31st

The last day of the month. I arrived up at the Hospital at 3-00pm, later than usual because I know the pharmacy are a bit slow on getting together the patients medication, unfortunately I was right, it was about 5-25pm when Gills medication arrived along with her discharge paperwork. Gill said her goodbyes to the staff and gave them enough sweets and biscuits to last a month and she also said goodbye to the patients in her bay. It was time to head for home with the woman I love.
Arriving home Summer saw Gill and just went loopy mad, tail wagging like mad, high fives and loads of kisses followed for ages. Summer wasn't far from Gill for the rest of the evening and neither was I.














 Pictures of some of the knocks, bumps and bruises I received while in hospital this time.


Words can't explain the feeling to have her home at last..... I do hope I don't have to do "Paul's Story" for a long time to come............................................

THANK YOU TO EVERYONE FOR YOUR CARDS, MESSAGES AND GOOD WILL
LOVE GILL.

I WOULD ALSO LIKE TO THANK THE DOCTORS,  NURSES, TEA AND MEALS LADIES, CLEANERS AND THE HOSPITAL CHAPLAINS SPECIALLY JONATHAN. ALL THE FRIENDS I MADE WHILE THERE.LOVE GILL.

Below is the link to Summer welcoming Gill home
                                              



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, 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.

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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