I thought I would start this blog with the blossom and the trees that are coming into bloom after the winter. They look so pretty I think spring is here at last
Some still in Winter mode.
I think spring has affected Summer as well, she was going crazy on the common.
1st April
Everything that hurt over the last few days has now returned back to my normal. My legs feel very heavy and hurt around the calves like when I cross my legs. My mouth took a long time to return back to its usual state. This still aches like I've bean hit. So nice not to have a hole in my tooth. Very strange to start with after all the filling came out Christmas time.
Right what else is happening-- Physio today same treatment as last week plus two more in my hands (19 needles in all) these are to help my neck, yes strange, ones in your hand help it, but they do I have had this before with Martin early on in my treatment and it helped a lot. The needle is put in and I turn my head and it gets easier. Trouble is it does not last. Wietse did something very similar when he treated me.
Nicola said the RSD is fighting back at every chance it gets. You would think it wants to get better but No it wants all the power.
The treatment itself went very well. When Nicola left me to relax with all the needles in I think I did zone out a bit as she said it was longer than normal time to be left. Usually about fifteen to twenty minutes this time it was about thirty plus minutes.
Walking home I felt very light headed and quite cold. Neck not as stiff.
2nd
Pilate's-- This went very well, I was able to do all the moves that I usually did before my ribs were cracked. I was pleased, I even managed the diamond press move. (Laid on stomach and lifting upper body. I could not do this last week.
Mouth back to normal now. I wish the rest of my body was. Shoulders hurt, legs heavy and I am having trouble with my left hand. Dropping things and pain. Carpel Tunnel I think.
My chest was very tight in the afternoon. I put that down to Pilate's.
I went to see Paul's Nana, She said she had not bean too good. Feeling faint and hot with a pounding heart. Not good at her age (97) or any age really. I hope next time I see her she will feel a bit better.
Knitting again and resting later. I felt quite tired. If only that would turn into a good amount of sleep.
5th
Poor Nana was taken into hospital early morning with pneumonia and kidney problems. I wish her all my very best.
Lindsay and the gang here. Grand National day, this is a big horse race run every year.
Jamie-Lee was watching it and decided Summer would make a good horse. She almost squashed her flat. Her dog Suey is a lot bigger.
A good day, Lindsay and Jay-Jay won a little bit of money on a horse bet.
6th
Gardening today putting in plants weeding and bug spraying. My sprayer broke as well so a new one is required. Another good day apart from this pain. Up to now most of the time the tablets keep it down to a purr and me being active stops it from getting to me. But lately its being taking over.
I don't really want to increase the MORPHINE but might have to. Hopefully its just a spike, after all my body has bean through a lot lately.
7th
Not a good night, sweating and pain. Pairwise let me see, my neck is a lot better, hand hurts and is swollen around the wrist. Shoulder nerve pain and rash. My legs feel very heavy again I have to keep moving them around and the pain goes, it comes back again though. I have had this pain quite a few times. I think it's a build up of lactic acid. I used to get it a bit when I ran long distances. Sometimes there is an over build up, so pain. This is why you should always cool down after exercise. I getting it a lot more now though, not too sure why but it seems quite common in RSD..
8th
Summer had her trim today.
Before trim
After trim I think she looks a lot better. I am sure she will feel good as well.
She looks so sweet.
Physio-- fifteen needles in all slightly different places from last week. Hopefully these will help with the sweating at night. No neck or shoulder ones this week as they are not too bad. One needle that was placed in my foot gave me a strange feeling, like a whoosh of heat travelling up from my foot to my face, very weird then very cold. This caused a sharp pain in my head. This lasted for the rest of the day. Nicola showed me how to massage my head to help. Last week when left to relax I actually zoned out. Not this time in fact I felt very unsettled and uncomfortable
Walking home I was light headed. Did a bit of shopping in town then home. After my bath I felt very light headed and dizzy I had to lay on the floor much to Summers delight, she licked me a lot.
9th
Woke to sweating again and a headache.
Pilate's this week was not so good. A lot of spasms and shaking. I still was able to do the one leg stand at the end even though I was not still.
Came home and sat down for a while. I then started getting the greenhouse ready for the seeds. I have not started them off yet as last year was so cold. I put together the benches and Karol from next door helped me put them in position. Dug over the ground so its ready for anything now.
My pain was less at the end of the day and less shaking too. I did ache from all the work.
Night time more knitting. I am making a jacket for a birthday present for Emmie, Ben's sister. I have now finished the one for Jamie-Lee and also the one for Lauren my friend Bev's, granddaughter
Laurens Jacket.
Jamie-Lee's Jacket.
10th
Great no sweating when I woke up today.
Went to see Nana in hospital with Lindsay. She has improved a lot. She was asleep when we got there. When she woke she said we should go as she wanted to sleep. Typical Nana. She is in the same ward as I was when I first went in after Christmas. This made me feel very shaky, there are lot of things I still have no memory of. Also while there we went to see Cilia who is also in hospital, she was taken in earlier in the day. A busy day for visiting.
I now ache a lot, legs are killing more than after a race.
11th
Paul is away for the weekend so I am on my own.
What a day for saving ducks!! Yes ducks- while coming back from the common a family of mother duck and about ten chicks were down the middle of the busy main road. All the cars were stopping. One I did not think was going to, I said to Summer don't look! she did not really know what was going on but the car did stop at the last minute. The duck went into one of my dog walker friends garden. We managed to get them back down Sincil Bank with a bit of help from a few passers by. The mother duck jumped up the wall to get back to the river but it was too steep for the chicks. So while I looked after the four dogs, three people caught and lifted them up on to the bank. Not an easy feat they run very fast. One little chick had Linford Christies legs and ran off straight towards the mouth of a the waiting dog. But it was alright he left it alone. With the last chick caught and back with the delighted mother duck. She was quacking very loud. Everyone went on there way. This was nice as people just helped with no question.
While putting the washing out I heard quacking and looked down into garage car park and there was a mother duck even though we could not see her, she was hidden by the ivy, with one or two chicks. A mechanic came out of the garage with another chick that was running around the workshop. I think he wanted to be a mechanic. We left them to it as the river is right next to the garage. I carried on putting the washing out. I heard a thud and the mother duck appeared on the floor followed by at least ten more chicks. They fell like lemmings from the ivy one by one, plop plop. I wish I had a video camera. They all toddled off in the way of the water. What a day for ducks.
Just as the family disappeared Ginge the cat appeared, if he had bean a minute earlier most of the chicks would have bean dead. What a close shave
Spoke to my friend Billy in Spain on Skype, who has RSD. He is having trouble with his legs too. He got RSD through a bad car accident. Other than the legs he is not doing too bad.
Nice to talk to a fellow RSDer.
12th
Not a good night a lot of pain.
I finished off Jamie-Lee's Mr Tumbles top. She liked it and recognised him straight away. Also I gave her the teddy jacket. I got Jay-Jay and Tommy-Lee a tee shirt each so they were happy.
Jamie-Lee in her Mr Tumble top.
A sunny warm day with the children playing outside.
A quite night knitting and a bit of TV, spoke to Andrew my son I speak to him most nights on Skype. For those who don't know he lives in Amsterdam.
13th
Finished off Jamie-Lees Aikido suit.
This is the suit I made Jamie-Lee so she could be the same as her brothers. Black belt of course.
15th
Not a good night, heard yesterday that Cilia is not well, she has pneumonia. Thinking about her a lot.
Good, Bev coming today so a better day for me we plan to go walking and have a meal somewhere. A small cafe has opened up at the Adult Day Care Centre just across the road. All the food is home made so we might go there. I am sure Bev would like that.
Bad new about Cilia, she has passed away.
I am so pleased Lindsay and I saw her on Thursday and she was in good spirits. I will always remember her that way.
These pictures are for you Cilia, I will miss you so much.
The swan on her nest.
With her mate close by as usual.
Bev and I had a walk, saw these swans that have bean nesting for a while down Sincil Bank.
Also went for a baked potato and tea at the cafe across the road. "GROWING FURTURES CAFE." run by students from the local collage. Very nice too, we both enjoyed it and will go again.
There is a shop, PELICAN TRUST, helping people with mental health problems and learning disabilities.
Bought some book as well. Bev bought a door stop. Not too bad a day but very sad.
17th
A day out today at THE WOODSIDE FALCONERY AND WILDLIFE PARK. The boys loved it so did Jamie.
The parrot Jamie-Lee and Tommy-Lee fed it. I stood well back I don't really like birds.
The chickens they use the eggs to make egg mayonnaise a lot of the animals love it.
A picnic dinner was good but the chickens kept coming to get me. Some had escaped. I don't like feathered things. I think they know this as well.
The weather was a bit cold but it did not stop us enjoying our selves.
Everyone enjoyed themselves and were tired coming home.
18th
In town today but getting a lot of pain in my shoulders and neck burning type. My legs are very heavy and my feet burning
After town I went to see Nana again she is not too bad. I saw a nurse that remembered me when I was in there. She said I was very poorly and looked a lot better now.
Wayne arrived about 7-00pm he is here till Monday so catching up and chilling out.
A home made chicken curry for tea very good it was too.
19th
Lindsay and gang here. The day was warm so we sat outside and the children played.
Later the boys put on there Aikido suits and Jamie-Lee put on hers they did not know I had made one. They were shocked and did there moves to show Wayne.
Jay-Jay as mentioned before has got his blue belt. They said why has Jamie-Lee got a black belt?
Easter eggs were given out later then the family went home. REST
TIME. A good day but a lot of pain. I had a bath later that always
helps. Also covering myself in TIGER BALM to help the pain.
Usually this pain stays in the back ground and is controllable but lately has bean a lot stronger. Those of you with RSD will know the pain I mean the one that does not go away. Watched a bit of TV then bed about 5am. I know some of my tiredness and pain is from lack of sleep but unless I drug myself I wake up after a short time with pain, spasms, cold, hot, etc. I cannot control RSD..... .
20th
I did not get up till after nine not really a lay as I did not go to bed till five am. Even then not asleep all the time.
Lindsay here for tea with Tracy plus Wayne and Paul. We are having a huge turkey with all the trimming. No children either so very quite. Tea went very well everything tasted so good.
Very tired later and PAIN creeping up all the time.
Wayne's staying at Helen and Chris's tonight so a quite one for me.
21st
Wayne's sorting out a few things on the computer and the laptop for me.
Tea was turkey and chips with salad. It was a big one so plenty left. Summer has got a lot for her tea as well. Made a few sponge cakes they did not turn out too good but tasted nice.
Wayne left to go home about 6-45pm, Paul took him to Newark to get his train. Home to Timmy cat. A good weekend with him here.
22nd
Not a good night a lot of pain and spasms, little sleep.
Making a cake for Ben and one for us a fruit cake, the type you put butter on- Ben's favourite.
The burning has gone from my shoulders and feet so that's good. One pain stops another one starts.
My hands are not too good either, dropping things a lot. This is a lot to do with the CARPEL TUNNEL but I think the RSD is playing its part as well.
The Staff nurse said she was settled and had had a good night sleep Gill said she had had seizures in the morning and also early afternoon. Gill was very upset and crying at visiting this afternoon, after about 45 minutes she started to calm down abit and my mum and dad arrived. This I think came at the right moment, I went to the loo and when I got back Gill seemed more relaxed.
During the evening visiting time Gill was very surprised when her brother David and sister in law Bev arrived followed by about 10 minutes later Lindsay, Tracy and our 3 grandchildren, Jay Jay, Tommy Lee and Jamie Lee, that reall brightened her up and put smiles on her face. About 15 minutes after they left Gill started with her seizures which lasted about 30 minutes. She settled a bit after that and the staff nurse said she was going to give her some Lorazapan.
Gill has asked me to add this at the end of this months blog
Well my bad luck continues this month and I hope May will be the start of a better year for me.
I hope you are all well
17th
A day out today at THE WOODSIDE FALCONERY AND WILDLIFE PARK. The boys loved it so did Jamie.
A giant tootsie.
Sad face.
Lindsay and Tommy-Lee putting food down for the chickens.
Jay-Jay getting a lift up by Mum.
Tommy-Lee liked the chickens.
Paul, Lindsay and Jamie-Lee.
you looking at me ?
Tommy Lee.
 |
Were not afraid of tigers.
The gang.
Jamie-Lee loved the meercats she kept going back to them.
A picnic dinner was good but the chickens kept coming to get me. Some had escaped. I don't like feathered things. I think they know this as well.
The weather was a bit cold but it did not stop us enjoying our selves.
Cuddle time.
Getting a tan?
Lindsay lost in the jungle.
Coconut palm.
Yes I had a great day.
Thumbs up from Jamie-Lee.
Tommy-Lee with his purchase from the gift shop.
Jay-Jays choice.
I dont want to go home I want to stay here with the meercats please Mum.
Everyone enjoyed themselves and were tired coming home.
18th
In town today but getting a lot of pain in my shoulders and neck burning type. My legs are very heavy and my feet burning
After town I went to see Nana again she is not too bad. I saw a nurse that remembered me when I was in there. She said I was very poorly and looked a lot better now.
Wayne arrived about 7-00pm he is here till Monday so catching up and chilling out.
A home made chicken curry for tea very good it was too.
19th
Lindsay and gang here. The day was warm so we sat outside and the children played.
Tommy-Lee.
Jamie-lee very confident on the slide.
This car, even though it is the biggest one she said it was hers for the taking and would not let any one in it. MINE, MINE, she kept saying.
Jay-Jay having fun.
Later the boys put on there Aikido suits and Jamie-Lee put on hers they did not know I had made one. They were shocked and did there moves to show Wayne.
Jay-Jay as mentioned before has got his blue belt. They said why has Jamie-Lee got a black belt?
She loves copying her brothers.
Jamie-Lee even had a new move.
The suit is a little big so a few alterations are needed.
Usually this pain stays in the back ground and is controllable but lately has bean a lot stronger. Those of you with RSD will know the pain I mean the one that does not go away. Watched a bit of TV then bed about 5am. I know some of my tiredness and pain is from lack of sleep but unless I drug myself I wake up after a short time with pain, spasms, cold, hot, etc. I cannot control RSD..... .
20th
I did not get up till after nine not really a lay as I did not go to bed till five am. Even then not asleep all the time.
Lindsay here for tea with Tracy plus Wayne and Paul. We are having a huge turkey with all the trimming. No children either so very quite. Tea went very well everything tasted so good.
Very tired later and PAIN creeping up all the time.
Wayne's staying at Helen and Chris's tonight so a quite one for me.
21st
Wayne's sorting out a few things on the computer and the laptop for me.
Tea was turkey and chips with salad. It was a big one so plenty left. Summer has got a lot for her tea as well. Made a few sponge cakes they did not turn out too good but tasted nice.
Wayne left to go home about 6-45pm, Paul took him to Newark to get his train. Home to Timmy cat. A good weekend with him here.
22nd
Not a good night a lot of pain and spasms, little sleep.
Making a cake for Ben and one for us a fruit cake, the type you put butter on- Ben's favourite.
The burning has gone from my shoulders and feet so that's good. One pain stops another one starts.
My hands are not too good either, dropping things a lot. This is a lot to do with the CARPEL TUNNEL but I think the RSD is playing its part as well.
PAUL's STORY
22nd
The next number of days will all be my story and I will go on a bit as this will be for Gill as well as your good selves as most of the time while she is poorly she doesn't know what gone on.
Gill went into the bathroom, I thought she's a long time so I went to check to see if she was okay. Unfortunately she was unconcious on the bathroom floor, this was about 8-30pm. She slowly started to come round but was starting to throw up loads of flem and she was getting spasms in her legs. Gill was in like a semi concious state most of the time. At around 9-15 to 9-30pm I dialled 999 for an ambulance. A paramedic arrived within 5 minutes, he checked her over and called for an ambulance. When this arrived they took her out in a chair. She arrived up at A and; E about 10-00pm. I arrived about 10-25pm. At about 11-20pm some bad seizures started and she was given Lorazapan, she settled about 11-40 and went into like a drug enforced sleep.
23rd
Just past midnight I sent text messages to Wayne and Lindsay. At 12-45 the nurse came and said when she wakes up the Doctor said she was okay now and she could go home. I questioned this and the nurse again had a word with the Doctor who said she could go home. The nurse removed the canula and sticky pads from the heart trace. Gill was still asleep when I went to get a cup of tea and some fresh air. On getting back I found that
she was awake but drowsy, I wonder if they woke her up while I wasn't there. We left hospital about 2-15am and Gill was still very drowsy. On arriving home I managed to get her into her electric chair in the dining/sitting room and made her comfy, still very drowsy she went to sleep. She awoke about 7-00am. She was very unsettled thoughtout the morning.
she was awake but drowsy, I wonder if they woke her up while I wasn't there. We left hospital about 2-15am and Gill was still very drowsy. On arriving home I managed to get her into her electric chair in the dining/sitting room and made her comfy, still very drowsy she went to sleep. She awoke about 7-00am. She was very unsettled thoughtout the morning.
At 1-00pm the seizures started again and I phoned 999. A paramedic arrived in a couple of minutes and by this time I had been instructed to get her on the floor. The paramedic called for an ambulance and while waiting for that to arrive he gave her oxygen and fitted a nose tube, he took her obs, she had 3 more seizures and the paramedic gave her an injection to reduce the spasms and when the ambulance arrived they put her on a heart monitor and then wheeled in the trolley/bed to the ambulance. She arrived at A and E about 2-00pm. They gave her 2 injections of Lorazapan, she was in resus bed 2 with one to one nursing.
About 4-00pm she was transfered to cubicle 8 a children decorated room, she did settle a bit but still had a few seizures and all her obs were fine. Thoughout the rest of the day she was having seizures and they fitted pillars to both sides, the top and bottom of her bed for her own safety because her arms, legs, head and body are flying all over the place during the seizures.
About 4-00pm she was transfered to cubicle 8 a children decorated room, she did settle a bit but still had a few seizures and all her obs were fine. Thoughout the rest of the day she was having seizures and they fitted pillars to both sides, the top and bottom of her bed for her own safety because her arms, legs, head and body are flying all over the place during the seizures.
She was transfered to the EAU Ward about 9-00pm
Unfortunately all the nursing staff could do was to administer her medication and to make her comfortable as and when they could, and they did look after her well.
When the Consultant arrived Gill told him that she didn't want to be "drugged up to the eyeballs" as she didn't know what was happening or going on, basically a drugged semi concious state
24th
Thoughout today she had many seizures and the nursing staff did all they could to care for her.
25th
25th
Today she had a large number of seizures in the morning and also in the afternoon. My mum and Dad visited Gill in the early afternoon. About 5-20pm Gill was transfered from EAU Ward to Dixon Ward, the porter was very kind and wheeled her slowy and very gently over the bumps. While moving her from the EAU bed to the Dixon Ward bed she had a bad seizeure. The actions of the nursing staff put my mind at ease and I new she would be well looked after on this ward. The night shift took over at 7-00pm and again I could see that she would get well looked after. The only downside on Dixon Ward was that on EAU Ward I was visiting all day on on Dixon the visiting was from 2-00pm until 4-00pm and in the evening from 6-30pm until 8-30pm. Gill had a number of very violent seizures today, possibly the worst she has ever had. About 31 lasting from 10 seconds to 5 minutes and the bigest one 10 minutes. Not all seizures are recorded. We were aloud to stay an extra hour in the evening as Gill wasn't very good. I would like to thank Lindsay and Tracy for comforting me as I shed a few tears again
26th
Lindsay our daughter has been a great help to me, visiting her mum as much as she could and looking after her 3 as well THANK YOU Lindsay. I have kept our 2 sons Wayne and Andrew as informed as I could. Lindsay had phoned Dixon ward to see how her mum had been over night and they said she had had a few seizures. At 1-00pm I received a phone call from Gill's staff nurse, it surprising how many bad thoughts goes through your mind in a spilt second. Relief, Gill only wanted her little cup bringing up.
Gill had no seizures while was visiting in the afternoon, but had quiet a few in the evening visiting hours. I wasn't visiting that night. She has also pulled muscles in her back which hasn't helped her at all because each seizure gives her more back pain as well as everything else she is going through.
27th
Sunday lunch and another call from her staff nurse, again horrible things going through my mind, this time she wanted a specific hair brush. Up to 2-00pm she had only had a few seizures but she is also having a lot of back problems and the Doctor had been called out to check her over. At visiting between 2-00pm and 4-0pm she had quite a few seizures and a lot of halucinations which were quite violent. Around tea time the on call Registrar was called out to check on her. Visiting at 6-30pm to 8-30pm was a lot better with no seizures but a lot of back pain. Gill's brother David and sister in law Bev visited this evening and Gill was chatting quiet well. We all decided to leave at 8-10pm as Gill was very tired. Goodnight darling I love you.
28th
It's Monday the start of a new week and I hope a better week for Gill.
I visited Gill at 2-00pm and she has only had 1 seizure all night, but had 5 while I was there visiting. Fortunately I was there when her consultant, Dr Gupta, arrived to see her about 3-30pm along with 6 of his followers. He seemed by his attitude a very nice man. Gill spoke about her medication and asked for certain drug doses to be increased, he checked her medication and agreed to increased doses. He has also said that he will arrange visits by HIPS and the pain clinic which Gill has agreed to, with if possible me attending at the same time. I was also allowed to stop on for a bit longer. My mum and dad also visited this afternoon.
Went to see Gill tonight arriving about 10 minutes late and her friend, Pilates John was there along with Lindsay and Tracy. Gill was in quiet a lot of back, neck and shoulder pain and she also has an aweful lot of like friction burns from the seizures and the night nurse said she would again check them all from head to toe and and spray them with Cavalon this leaves a film over them. Gill didn't have any breakfast or dinner but had 2 sandwiches and some ice cream for tea. I also took her a home made smoothie containing avacado, banana, apple, orange and red grapes and she said it was lovely She also had 2 wee's today so hopefully no catheter as she has always has problems with them and after her last hospital visit in January she came home with it and had it for a number of weeks.
29th
About 1-30pm I received a phone call from one of the junior Doctors on Dixon Ward stating that a Psycologist from HIP's was seeing Gill about 2-30pm as it was agreed that I attend as well.
I arrived on the ward at 2-00pm and had to wait a while as they were fitting a ripple air matress to Gill's electric bed. She did tell me off because I didn't fill in her lunchtime menu so all she had was a bit of rice pudding, hope I filled in her tea menu okay. She said that she had had a five minute seizure earlier and was still quite exhausted. She said that the physio's, 2 youngish lads which put a cheeky smile on her face, they attempted to get her out of bed, but all she remembers is coming round laid flat on her bed with one physio stroking her face, she had past out. Thats how 2 young physios effected her. The psycologist, a nice young lady talked with us both for about an hour and Gill said she felt better after it. The Psycologist suggested that Gill's condition should be called Non- Epileptic Attack Disorder. Another meeting was arranged hopefully for Friday. About halfway through Gill have a mild to medium seizure and her staff nurse got her some oramoph for back pain, but at least the psycologist could see a bit of what Gill's going through and I did manage to get an extra 20 minutes visiting time.
Arrived at Dixon Ward at 6-30pm with Gill fast asleep and snoring her head off. Lindsay and Tracy arrived just passed 7-00pm. Gill woke about 7-30pm and was in a bit of pain so she was given Oromorph and was quiet jovial, hopefully she'll sleep a bit tonight. Night Night. The nurse gave her Lorazapan later in the evening.
30th
The Staff nurse said she was settled and had had a good night sleep Gill said she had had seizures in the morning and also early afternoon. Gill was very upset and crying at visiting this afternoon, after about 45 minutes she started to calm down abit and my mum and dad arrived. This I think came at the right moment, I went to the loo and when I got back Gill seemed more relaxed.
During the evening visiting time Gill was very surprised when her brother David and sister in law Bev arrived followed by about 10 minutes later Lindsay, Tracy and our 3 grandchildren, Jay Jay, Tommy Lee and Jamie Lee, that reall brightened her up and put smiles on her face. About 15 minutes after they left Gill started with her seizures which lasted about 30 minutes. She settled a bit after that and the staff nurse said she was going to give her some Lorazapan.
Gill has asked me to add this at the end of this months blog
Well my bad luck continues this month and I hope May will be the start of a better year for me.
I hope you are all well
Love Gill
