Well the last month of this year and of course the last blog.
My mouth sore is improving and its easier to eat now. Accue today. I brought them up to date with the changes, like my eye socket pain and hip and joint pain. The team treating me were the same as last time Jason, Candy, Hasim and Brett. I had needles in my shoulder and hip to start with. After these had done there job. There were more in my wrist and in my forehead. Hopefully this will help the eye pain. Another one in the top of my head. Also ear seeds; one in each ear. I am to press these to relax me, I have had these before.
Lindsay finally has her appointment for her head at Sheffield. This has bean changed twice already.
I was going to look after Jamie-Lee, but the children are all ill with this NOROVIRUS. Lindsay was up most of the night with Jamie-Lee then Tommy-Lee felt ill so did Jay-Jay. So I did not have her today. Hope they all soon recover. Jamie-Lee's play is on tomorrow so she will miss it. Poor Jamie-Lee she was so looking forward to it and I was going to watch her.
Lindsay has seen the Doctor and this is what she said - Lincoln Hospital should not have let her go home when they did. She should have bean taken to Sheffield straight away where she would have received specialist care. Lindsay did say that they were not doing anything for her and the noise and light were terrible, hospitals have lights on constantly and can be very noisy places. So it was part her decision to leave. The Doctor said she was not surprised at that choice. The scans that have bean taken show the same finding no worse or no better.
They are going to see if they can reduce the pain she is getting and introducing some different treatments. One is BOTOX injected in to the head. She will see a headache pain specialist probably to change her tablets for something more effective, another even more detailed scan plus repeating the the same scan again to compare. Also she is seeing a more experienced neurologist.
Lindsay felt more at ease with these plans, and said this Doctor seemed to understand what was going on. As in the past times it seemed doubtful. All that needs doing now is to get started with it all so she can get her life back. I just hope this happens very soon. She is back at Sheffield in three months so everything needs to have happen be for then.
Herbalist appointment today, last time I was given drops last time to calm me down. I have felt much different though may be a bit calmer. Today I have bean given some of the same drops plus some tonic drops also some tincture to help me sleep. WELL!! This lot cost me £30 so I hope it does something.
I was also given a print out of a book by Professor Lorimer Mossley and David Bulter, both Australians as not much research is going on in UK. It is titled "The Explain Pain Hand book". This deals with pain much the same way as I have bean doing the last few years through mindfulness.
Shutting out the pain and not letting it take over. I can remember a few Blogs with RSD 1 - Gill 2 which shows I was winning or RSD 3 - Gill 1 that time the pain would have over powered me. Just small things that made me feel like I was at least, trying to help my self, and not relay on tablets more and more. I think it worked for me, as over 12 years later, and still walking, painful most of the time but still keeping going. How I am not even sure my self. People say how do you do it ?? Other say you are strong willed. I say I want a life, hard as it is; its better than a wheelchair one. I know this as I spent a lot of time in one, also crutches for over three years in the early days. I HATED IT, having to rely on someone else to do things for you was not an option that I wanted. No one does but for some it be comes permanent.
As Sir Elton John says..... I AM STILL STANDING. Hopefully I will keep doing, so as long as things don't get worse and the worst seizures stay away.
Would have bean my Dads Birthday today, 95 what would he say to all this? He died soon after I was diagnosed. I think it would have made him very unhappy to see his only Daughter, and Granddaughter suffering..
Pilate's went well Joy was back too,she is more or less recovered. She enjoyed the session as well.
OH NO-- Lindsay has the virus she is feeling very bad no tablets are keeping down so head pain is extreme. Get better soon Lindsay, she said stay away, normally I would have gone to help her but I don't want the virus (no one does) but if I get it the RSD will make a big thing out of it and I will suffer badly, a 24-48 hour virus will become a least a week long.
We have the builders here to re roof the kitchen and bathroom part of the hose and cement the end wall.
Age UK busy as usual. Some things went wrong today but that's part of the fun. I put milk in the tea pot then put t bags in the hot water jug. The customer did not mind as he got two pots of tea for the price of one.
Out for at meal at night with his family Nosey Parker's just down the road. I had gammon and it was very tasty.
Got Jamie-Lee here for a few hours till Tracy picks her up. She was good and played mostly with the Pay doe.
In the afternoon Paul and I went to see Cinderella the Christmas Pantomime at the Theatre Royal.
We were given tickets by a friend.We had good seats too The Royal Circle no less.
The Music started and I nearly shot out my seat, so loud. I thought I don't know if I can cope with this!!! When the Actors started the music went down a bit, thank goodness and I was able to enjoy the performance. Not with out pain though. My knees have gone crazy this week with a lot of pain deep in my joints more the knees. I know when the music started my pain levels shot up to danger zone.
Just be for we set off to the theatre I realised that I had lost my Teddy brooch that my Mum gave me the last Christmas she was here ( she passed away in November 2004). I was very up set, this brooch had not left my jewellery box for twelve years. The first time it did, I loose it. I wore it last night.
Paul and I went back to the Nosey Parker to see if it dropped off there, but no I looked at home but no luck. This put a bit of a dampener on the day as could not stop thinking about it.
Lindsay phoned up and could sense some thing was wrong as she was out for the day I just said
not to worry. She praised it out of me and said she would put it on Face Book. You never know some one could have picked it up in the car park. Thank you Lindsay, and every one else who shared and cared..
The Pantomime was very good and I enjoyed it a lot. Thank you Peggy for the tickets.
When I was in the bedroom a teddy bear dropped off my rocking chair This is where they all sit.
This was a bit strange as he sits well back from the edge, not easy for him to fall off I picked him up and put him back...then I saw my brooch. This must have dropped off when I put my cardigan on the back of the chair. Was Mum helping me?? I was crying all over again Happy tears this time. This went straight back in my jewellery box and I don't think it will come out again.
Icing all the Christmas cakes ten in all.
My friend Angela started a new job today I hope she gets on well.
My knees have gone CRAZY they hurt so much. Like tooth ache not letting up at all. The weather has bean mild and damp for the last few day so that I think has something to do with it. I just wish they would ease up.
Had to go out and get more eggs and icing sugar as I had ran out. Got back and finished the cakes. The builders are getting on well with the roof over the kitchen and bathroom, despite getting rained off a few times.
My friend Bev is here today from Beeston. I have not seen her for a while so we had plenty to talk about.
She has bean to America, and also got a new Grandson. I too had plenty to tell her, not as exciting as her news but news all the same. Talked about Lindsay, She is having a bit of a better week. All too soon it was time for her to go. Exchanged presents then said our goodbyes till next time..
Pilate's today, PAIN everywhere. After I went into town to get some Christmas presents, shopping and Paul are not a good combination. Most things we saw were in the wrong size or the wrong colour. We did manage to get some presents though.
I am now tired but will I sleep? Knees hurt like hell, even the burn!
Builders have now finished and work looks good. The older builder would like a cake as well, so that's another one to make.This will be over the weekend and will make it eleven in total. Many more and I will be opening a bakery.
Another mild day where has winter gone. I prefer the colder sunny weather than the damp warmer
type. I think the damp weather causes me as much pain as the cold frosty type.
Went with Angela today to see one of her friends. She is a nice lady who can not get out much now as she has bad legs. She loves to talk and most of what she says is very interesting. Shame she is mostly house bound, I would hate it. Once I stopped in for a month after being in Hospital, the first two weeks were alright because I was so week but after that I felt like a caged lion.
After tea Paul and I went to do a bit more Christmas shopping at the BIG up hill Tescos. This place is huge, built last year I think. We did get a few bits so it was not a wasted journey.
Age UK are having the third party for the old uns today. I bet the kitchen staff are pleased its the last one. This is a three course set Christmas meal. About one hundred and eighty people today and about the same the previous two days. I wore my made up Christmas jumper which was a disaster on the IA Christmas meal (4th) as every thing dropped off. This time most stopped on but Santa did only have one eye at the end.
A good day but very tired when all done. I needed to do some shopping as well so I did not get home till six pm.
Foggy day and very cold. Made the builders cake so number eleven and the last-- but saying that a neighbour has asked if I will make him one in the New Year. Of course I will.
Got all three grandchildren over night and most of tomorrow. They all are excited about Christmas
Tomorrow Lindsay and Ben are having dinner with us and I am cooking beef with all the trimmings.
The children were not up too early about nine I think, but Jamie-Lee did go up to the boys and wake them up an hour earlier. We have a three story house and the boys sleep at the top, which was Wayne's then Andrews room. I went on the common with out them as its very wet and they had no suitable shoes/boots. Jamie-Lee did not say any thing as I went be for they came down. Lindsay arrived for dinner everything was good apart from the beef which was a bit chewy.
Angela's Birthday (Happy Birthday Angela) so going round later. Andrew is arriving later today from Amsterdam so Paul will be picking him up from the Airport.
Paul dropped me off at Angela's house she had put on a buffet for us, Paul stopped a while then set off for the Airport. Andrew was on time and more importantly on the plane. We got Angela's a bottle of Rum as a present. We talked and ate, then she dropped me off home.
No one was in, Summer was, as not back from the Airport yet. As requested by Andrew we had Chinese for tea. Very nice too, chatting and catching up as Andrew not bean here since July. A good day all round.
Pilates went well quite stiff in joints today. I think this is more the FIBROMYALGIA than the RSD, pain in my knees and elbows. The sort of pain that does not give up. In fact it hurts more when sat.
Jo made biscuits and Christmas bits which were very nice -Thank you Jo.
Later I made mince pies and iced the cake ready to be picked up by the older builder, Dave.
Dentist today 11am, or so I thought, They changed the time to 10.45 and did not tell me so when I arrived at 11am they said I was late and could not be seen. I showed them the slip that clearly said 11am. The quite blunt receptionist said I would have had a letter or call-- I had neither. Another appointment was made for tomorrow. I was not happy, the idea was to stay in town and do some shopping as I have an afternoon Doctors appointment later. I decided to go home after a bit of shopping then walk back later. All I needed to see the Doctor for was to get my OXYNORM as no repeats left on my prescription. Also GABAPENTIN was coming to an end too. We have two Doctors surgeries, and the one I was at today was right through town so a lot further for me to walk.
At the Doctors she was pleased with the way things were going . Renewed the prescription, she is not a Doctor I usually see, as not quite the bed side manner of the others, but today she was charming and very nice to talk to.
When I got back Angela was here so was Lindsay with all the children, so no peace for a while. nice to see them all though.
After tea we to see my Brother and Sister in Law, they are both doing well after their car crash and David hopes to be back at work very soon.
Age UK not a normal day and not many there when I arrived. Its Mince pie day and hot chocolate with hot turkey and pork rolls, so no other meals. There was carol singing too. Andrew came with me and met a few of my work mates and friends. We did a bit of shopping in town.
Dentist went well this time and I do not have to go back for a year.
Went to see Paul's parents at night to exchange presents.
Sort out day, and cooking gammon sausage rolls. Wrapping presents. Wayne arrived here today, Paul picked him up from Newark station.
Went to see Nana well Paul's Nana. I walked down about fifteen minutes arrived at her home to be told she had gone to bed, as a long day. I think they had a lot of activities during the day. I went up to see her in her room and she was asleep, I touched her cheek and she woke up and said a few words. I showed her the things I had brought her mostly home made cakes and bits. I asked her if she wanted me to go she said YES PLEASE. I gave her a kiss and left. Fifteen minutes walk back, for ten mins there. But never mind at least I got to see her. It's her Birthday very soon, 100 years old.
Merry Christmas to everyone and a busy one for me to day. Lindsay and family came mid morning and opened presents here. All lovely presents I think I am set up for the year now in bath products and slippers. There were six extra for dinner but it all went very well, everything cooked perfect.
An unusual warm day as well did not seem right for December. Only three children here but felt like more as they were very excited. I think I coped quite well with it all. Thank you to every one for all the presents.
What a day I can not cope with a lot of noise or a lot of people be for RSD I was alright. I think I did well at least I survived.
My eyes are very dry and have bean for a while this alone can be very annoying as the eye lids stick to the eye. I have had dry eyes for a long time now, part RSD and part medication. At times this can be a problem or not so bad. A lot of joint pain too, knees being the worst. The cold foggy air does not help much.
A colder day and brighter a lot better all round. I love cold bright day the common takes on a Magical look and feel. Andrew came along with me and Summer, as most days he has. Today she played with her ball which she loves.
Tracy here later as she has bean to her parents for Christmas, more presents exchanged and more great things.
Lindsay called in, on the way to Wacky Warehouse for a Birthday treat for Ben's (Lindsay's Boyfriend) Daughter 7 today.
Knees hurt terribly, in fact I hurt all over. The sort of pain that does not go even after throwing everything I have at it. Trying to relax and do things is not easy today. Wayne home today, coming back on Friday for a Birthday. Paul's Mum and Dad here for tea everything went alright. A busy few days but I survived again.
Today we went to The Collection in Lincoln town centre. This a collection of Lincoln finds and past history. Well worth a visit. Also no charge to get in, donations welcome.
A cold day with freezing fog. This did nothing for my pain especially going up hill. We had dinner in town at "Hunters"a fish and chip shop. Chips and Irish curry for me and Andrew, fish chips for Paul. Very nice too-- I asked what was the difference between English and Irish curry, was the Irish one thicker !!!
Quite pleased to get home as now so cold, Summer was pleased to see us as well.
Another sharp frost and cold. I have got two children today Tommy-Lee and Jamie-Lee. They will be here for tea too. Jamie-Lee played with her new babies and all the thing I had made.
Andrew kept her entertained for a while while I played cards with Tommy-Lee.
We had tea; potatoes, veg and turkey in gravy. Both of the children cleaned their plates. Both said it was good. Neighbours have asked us around for New Year so I think we will go for a while. I hate the Auld Lang Syne song - it makes me feel very sad and too many sad times this last few years.
Age Uk for a while today. We are not that busy today but it did pick up later. No one was too bothered though as not many volunteers in today. Lattes were the hot item on the list I made I think 12 or more. Plus a few other coffee drinks.
Wayne came back from Halifax for the party I think was very good of him.
I left early so I could go to Nana at her 100th Birthday Party. A lot of people I have seen for a long time. I spoke to Nana and was not sure if she knew it was her party, but when she sang Happy Birthday she sang TO ME with a big smile on her face. She knew. We got her an orchid for a present .
Well nearly another year passed. We are going out like I mentioned earlier for a little bit.. Andrew is out with a few friends tonight as well. Wayne also celebrating the New Year tonight with a friend.
A nice time at Ness and Squidge's house fireworks are going off everywhere tonight, so we came back a bit earlier to be with Summer. I did not intend stopping all night any way. A little bit too much noise for me.
Came back, and at Midnight watched the fire display on the common from the bottom of the garden. Good it was too--- Summer was barking and running around, but not scared of them. I think they just annoy her and when she barks she anoyes all the neighbours that is the ones that are not drunk by now.
Well 2016 has come to an end not the best of years for our family but probably not the worst either.
Hope you all as best you can be and had a good Christmas and New Year all the best Love Gill.