MAY- be better times ahead.

1st


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

2nd

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

3rd

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

4th

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

5th

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

 
My padded cell as I called it.  

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

6th

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

Why is this medication prescribed?

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

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

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

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

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

7th

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

8th

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

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

9th

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

10th

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

11th

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

12th

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



13th


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

14th

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

15th

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


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




 Some of my many patches and bruises.


16th

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


17th


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

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




.
 Be for the jump.






 Coming in to land.


 Well done Selina.


18th

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

 Eyes hardly open.


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




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

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

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

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

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


20th 

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

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

21st 

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

22nd

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

23rd

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

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

25th

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

26th

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

27th

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

28th

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

29th

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



30th

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

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




 






 

  




31st

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


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

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



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

1 comment:

Mrguillmiguel Norris said...

Absolutely gobsmacked!!!
What an evil disease this is, that it can do so much damage in such a short period of time. Thankfully, you heal well. Big shout outs of praise to all the hospital staff for taking care of you, all your children for being there to help, and especially to Paul. What a star you are mate. Loved our little chat tonight and can't wait till the next. Good luck and God Bless. Billy

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