Happy New Year to everyone and I hope this is a better year for me.
2nd
Woke up with a violent headache. I have had a bad head for a few days but nothing like this. This is like someone squeezing my head. Paul took Summer on her walk. After some IBRUES I went back to bed. About 10-00am I got up, still a head ache but not as bad. Things got better as the day went on. I know there are a lot of virus's going round. So I hope I don't get one of them. Could be the tablets even. I have stopped BACLOFEN today. I was only taking one in the morning.
4th
Not a good night again pain and spasms.Very cold today a very sharp frost looked like snow first thing. A lot of pain in my hip and right shoulder. Today I am sorting out the tiny baby clothes that Jamie-Lee wore when she was born. She is having them for a doll I have got her (Baby Anabelle) when she is a bit older.
So tiny.
That's a new born baby grow next to her she in tiny baby up to 5LB.
Jamie-Lee a few days old tiny.
Now look at her, this was taken four days be for her second Birthday.
Bed late tonight well about 3am, I was watching a program- Katie Hopkins My Fat Story, a fit sun journalist who was under weight who ate herself stupid, to gain weight to prove if you eat more you get fat. Bigger people usually say they can't loose weight no matter how hard they try. The aim then was to loose it all again, in the same time it took to gain it. She nearly did it as well just a few pounds short. The weight she kept on everyone said she looked better than be for.
Lindsay has got Jamie-Lee a new bed, Lindsay thinks she wakes herself up by knocking her legs and arms on the sides of her cot. She is sleeping in it tonight hopefully she will sleep better it will help Lindsay so much as she doesn't get much sleep at the moment.
5th
I now weigh eight stone, just, in my pjs. Early December 2013 I weighed eight stone twelve pounds more or less.
Jamie Lee slept well and only woke up once briefly - keep it up Jamie-Lee.
Jamie-Lee fast a sleep.
I slept quite well too, only a short night but I feel rested. I feel different to what I did a few weeks ago too. I hope this means the seizures have stopped for good, I hope so but no one knows.
In the afternoon I went into town for a few bits. First time on my own as well. On the way back I timed it right for my appointment with Dr Mehta, He is pleased with me and said I looked well. I told him I felt better too. I bought him up to date on the tablets and he said I can stop the DIAZAPAM too. I was taking just one at night, as between us we have bean knocking them down one by one. This one makes me feel heavy headed in the mornings, back to see him in a month.
7th
Today I am going back to Pilate's, the arm chair one as I call it. Some I do standing up though. I enjoyed it and I did feel better and looser after it. We did some moves I have not done before and used a disc. We sat on it, and stood on it- its a bit like a balance ball feeling even though you are only a few inches off the floor its quite hard to balance its makes you use your core muscles of which mine are very strong.
I still would like to get back to my own class. I hope after five weeks at this one I can. Just rested in the afternoon a bit of a shock to the body after Pilate's and not doing them for a while. I have done a bit at home but its never quite the same.
8th
Not a good night, in fact the worst for a while. I went over on my foot just before going to bed. This hurt a bit but not enough to take anything extra. After about half an hour in bed the pain was extreme. I thought here we go again RSD making a mountain out of a mole hill again. The pain got worse and spread to every limb, and my head was spinning like a top. I took OXINORM, this did little to help I was having very strong spasms as well. A bit later I took two 400mg IBRUES this helped as well along with the OXINORM. This made me itch as I have not taken too much since my stay in hospital. I settled to sleep about four thirty after Paul had made me a cup of tea.
Haircut at teatime at Helen's new flat. A lot better and bigger than the old place. We all had Chinese, nice but not as good as our local one.
9th
A better night, I thought it could not have bean much worse but of course it could have bean. I did not end up in hospital this time.
A sad day today one of my friends died, Lindsay and I are going to his funeral. He used to work at the Cathedral and his son still works there, so it was held there. This was quite hard for me as it brings back my parents funerals. I did all right though the coffin was covered, apart from when it was blessed and being carried out, I shut my eyes and kept my head down. As funerals go a nice send off he would have liked it.
A quite afternoon watching the first series of Fringe even Paul watched some. He says some of the stuff I watch is crap but he enjoyed this. He got me this for Christmas, six seasons 101 episodes.
10th
A very windy day, we have weather warning in place with gales up to 100 miles an hour and also rain. Very rough on the common with Summer. Nice at the same time, cold to my face.
Lindsay and family are here later. The boys were mostly upstairs on the computer, Jamie-Lee played with Summer and Suey. She played with her pram as well and liked the new covers I had made for her. She said her baby liked them too.
Jamie-Lee's little pram and cover set I made.
11th
Not a good night, pressure headache again. My full body aches today. Very cold on the common I think snow is on the way again.
My brother and sister in law are are here for tea. Paul has got everything ready and I will be doing the washing up etc. We all enjoyed the tea and each others company.
When I had a bath later I noticed my knees were very swollen no wonder they hurt. I am often asked why they swell up, the answer because they can. RSD does not take pity on anything in fact it kicks you when you are down.
13th
Another rough night my legs and body jumping a lot, even when they stopped it still felt like they were still jumping. Not much sleep either. I have bean thinking about my sleep pattern or lack of it.
When I was in the hospital I was very drugged up and this knocked me out quite a bit. Now the drugs have worn off completely I think my body has returned to how it was be for the extra drugs.
I have knitted a little baby goat it only took a few hours to do.
Baby goat seen here with the other goat I made. These are for Sally.
14th
A very cold morning with a sharp frost, the common looked very pretty.
Pilate's again I enjoyed this session even though it made me hurt, I hurt for a reason and I did feel looser later. I still hope to go back to my original class next term. Did the ironing in the afternoon.
I have started taking MELATONIN again to see if it will help me to get into a pattern of better sleep and stop asleep most of the night.
15th
I am going to see Lindsay at her house for a change. When I got there Jamie-Lee said where's Summer. Suey was here Saturday so I think she thought Summer would come with me. Funny thing was I nearly took her. She was playing with some of her Christmas things. So for the next few hours we played with the babies, (her dolls) with her castle and more things as well. She showed me her new bed. She said I could sleep there and she could sleep in Mummy's bed. I did fit in as well. Lindsay's bed is very bouncy and she jumps on it when she can. Her favourite film at the moment is Frozen as with many girls and boys. We were singing the song Let It Go and laughing as well. She does not usually have a day time sleep now, so no rest. Lindsay said now you know how I feel, she is like this every day, full of fun and chatter. I said just the same as you were.
When the boys came home from school Jamie-Lee and I hid under her blanket to surprise them as they did not know I was coming today. Kisses and cuddles all round. I enjoyed my day with them all.
16th
Today is a big day for Jamie-Lee-- she is going to school as she calls it. Really its pre-school/nursery. Lindsay was not sure how she would be, a few tears and not wanting to go in. No- she was fine straight in and played with the other children. When I spoke to Jamie-Lee she said she decorated a cake, but Suey, there dog, ate it. I am pleased she enjoyed it, she'll go two days a week. I think it will help Lindsay and also Jamie-Lee. Lindsay can get things done and Jamie-Lee will learn to play, and share her toys with others her own age.
Jamie-Lee with her cake.
This afternoon I did a few bits in the garden and a general tidy up outside and also prepared the green house for spring planting. Quite a nice day very warm in the sun. I payed for it later as I ached so much.
18th
A very cold night, I woke up a few times cold. My temperature changes have bean quite bad this year so far. I suddenly start sweating just sat still or very cold to the point of goose bumps on my body. Weird RSD really messes up everything. I think as time goes on the pain does get a bit less. Not as violent. On the other hand pain is in more places than it was. A nice walk on the common that will sort me out. Very cold and frosty..
Lindsay and family didn't come yesterday, Lindsay was not feeling too good. I did see them all, the day before though.
A bit of snow about 11-00 pm big flakes. I thought they would settle, but not to be this time. Wayne has had snow over the weekend in Halifax.
20th
Lot of left hip pain in the night.
I'm in town with Lindsay, we're getting Jamie-Lee some shoes. She was very funny in the shoe shop. She was trying on shoes that were too big and saying them nice. She also picked up a back pack and said it was for school.
Shoes bought.
Jamie-Lee in her new shoes.
Jamie-Lee with Tommy-Lee and her big doll on the chair.
We went to McDonald's for dinner, when the music came on she started dancing and asked us to dance which we did, she wanted everyone to dance. She fell asleep on the way home sleeping for two hours. Lindsay said she had not had a good night.
Had homemade lasagne for tea very nice it was too. My hips and wrists hurt a lot today. Elbows joined in later.
A bit of snow later.
21st
Average night with pain. Snow has not settled, a bit more fell mid morning while we were out walking. The wind was very cold but Summer never seems to feel the cold though.
Pilate's went well I was quite stiff when I went, after the session I felt a lot looser. I managed most of the moves apart from the toes one on my right foot.
Wayne rang up and said we have a lot of snow in Halifax even the buses had stopped.
A bit of knitting at night, I am making my brother a pair of gloves. Like me he has a problem with keeping his hands warm. These are made from 80% wool so should do the job..
23rd
Not a good night, pain in hip and leg plus of course the foot. This hurts I think because it can.
When I got up I felt dizzy so I went back to bed for a while. After this extra bit of rest I did feel better. Very cold again on the common I think we will be getting some more snow soon.
A quite day for me today doing the blog and resting. Popped round to see Ben next door he is doing alright. I feel better than I did as well.
24th
A better night at last but still awake at 5am. Pain down left side, quite bad, pain levels have bean up quite a bit this last week. Maybe the cold, doing more or just the RSD or all of them.
We went to see my sister in law Pam, and brother in law Malc, Paul is fixing a new cooker for them.
Pam has really done well as she had a massive stroke and a brain hemorrhage a few years ago. She was in Sheffield hospital for a long time and also in Lincoln as well. She still has no use of her right hand, but regained use of her legs and can walk a short distant.
Lindsay and family not here today, little Jamie-Lee is ill, the same virus that Lindsay and the boys had. Aching limbs and a high temperature not nice at all. Get well soon Jamie-Lee. The boys will look after you like you do when they are ill. I hope they are a little gentler than you though, Little Miss.
Not too good a day for me pain and more pain. I even went to bed for a few hours in the afternoon, I did not really feel that much better. Sat down the rest of the day. Bed about 1-00am took two 400mg IBRUES before I went up, I hope this will help.
25th
I could not settle extreme pain left side of head above eye brow. My heart was beating that fast it hurt. Painful spasms just about everywhere. I took 10mls of OXYNORM which Paul gave to me.
Hot sweating and not too good at all. I then had a seizure lasting about a minute and half, Paul said a full blown one with arms and legs going. I settled after this and had a cup of tea which Paul made. Awake a lot more the rest of night/morning no more seizures though. I was up about 10.30 still very much feeling the after affects. (Paul's bit...As the seizure started a million and one things were going through my mind, how many seizures do I wait until I dial 999, how long will she be in hospital, and its coming up too her 60th birthday I do hope she isn't in for it as she was mine. But thankfully she took it in her stride, didn't panic and soon got on top of it. Well done Gill)
We both took Summer for her walk I ached but was pleased I went, as sitting around with pain does no one any good--- least of all someone with my problems.
Later in the afternoon I had a lay on the settee and went to sleep for a while. My body is hyper sensitive again and a fair bit of pain as well. I try not to take extra MORPHINE as it messes up the normal dose and the body wants it all the time. I know things will calm down soon so long as I don't have any more seizures.
27th
Better night all round. My friend came round first thing to tell me her mum had died quite suddenly. She went very peacefully in her sleep. So not the best start to the day
We are both out today day at Sally's a bit late setting off, we got stuck behind a tractor as well. Things like this happen when you are running late. We got there and Sally was busy sorting out horse bridles.
We had a cup of tea and I gave her the goats I had made for her, plus Christmas presents.
She liked them all. I think the bigger goat is going to be called Dixon after the ward we were both in not sure about the baby one.
After Sally's, we carried on into Mablethrope as its very close by. We had fish and chips too they were very good and the fish was sweet. A look round but not much open as most closed till Easter time. A look at the beach and sea. Quite calm and peaceful, just what I needed after the bad news.
The journey both ways was good as well, a few spasms but lets face it I am not going to be like I was before RSD am I. Not sure if it was the fish and chip or just eating at large dinner as I had a bad stomach pain and bloating for the rest of the night.
28th
I was very stiff this morning and a walk with Summer sorted it out a bit. Joints are very tender. I have Pilate's later so that will help a bit I hope. Everything at Pilate's went well and it did loosen me up as usual. I was hoping to go back to my original class but Jo said its full at the moment.
After Pilate's I went into town. Paul dropped me off. I wanted wool to make Jamie-Lee a cardigan. I got her a doll from Oxfam charity shop for £3.50. This is a big doll and fits Jamie-Lees baby clothes for about three months old. The suit she is wearing was the one Cilla and Ben got her for her first Christmas when she was nearly four months old old. I was pleased as now she always has it to remind me of them.
Perfect fit.
Jamie-Lee in the suit at Christmas.
29th
Today Paul and I are going to see Bev at Beeston near Nottingham. When we left the snow falling in Lincoln.
A good journey a good cup of tea and a chat, I was feeling quite relaxed. Soup and bacon sandwiches for dinner. The snow fell very quick here and soon there was a good covering. We were all saying how much Summer loves the snow so she will be pleased on her walk tomorrow.
Russ had an operation on his knee in the morning. We heard later everything went well and he was able to go home. Get fit again soon Russ.
When we got back to Lincoln there was no snow.
Very tired later I think the seizure I had Sunday took more out of me than I thought. 31st
Not a good night sweating a lot hot and cold. Joints painful today as well.
Lindsay and Tracy are here but are going out for dinner with Selina for her Birthday. Happy Birthday Selina. I have got the children for a few hours. Jamie-Lee is still not too good, a bad cough and runny nose. The boys are not much better. They were all very good. Jamie-Lee loves her doll calling her big girl and not a baby. I think most of the clothes were on/off thoughout the day and at one time had three sets on her. She found out she does not fit in her pram but we have a bigger one for when she is older.
A bit too big, said Jamie-Lee.
The boys were mostly upstairs in the chill room. Jay-Jay had brought his laptop and Tommy-Lee his Ipad. Most of the time they were on them or colouring. Dinner was eaten and enjoyed by everyone the boys having seconds chips, sausage and chicken dippers.
Lindsay came back after a nice dinner of pizza and they were pleased to see her. A good day, nice to have the children I have not seen much of them this year- tired but happy and enjoyable day.
A mixed start to the year but a better one than last year. RSD is a hard thing for anyone that has not got it or heard of it to understand. How can you be running around one day and almost crippled the next??? RSD that's how-- when I try to explain I liken it to MS then most people get it.
I hope things are going well for you and the RSD is calm. Love as allways Gill.
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