June. 1st

Pilate's was painful everytime I put my arms up, pain and spasms shot across my shoulders. Legs not too bad apart from my knees. I did what I could.

I went to see Angela in the afternoon. She is better now and waiting to start a new job hopefully very soon.

I am feeling very tired, well exhausted, Pain spasms lack of sleep all lead to a poor life.
I think I need my B12 more frequent  than I do now, three months apart. I need to see the Doctor about it. Also may be upping some of my tables or adding some to help this pain thing I am going through.


Age UK again, Not too busy today. Nills said it has bean dead all week. I know the work is sometimes a bit much for me but I do enjoy it. I would not go if I did not. Angela is not going there anymore but I will see her at other times.


My Daughter Lindsay is doing as well as she can be. Still bad heads and being sick a lot of the time.
She is having another scan on the 17th of this month. Hopefully by then they should know what to do. I hope so, as its very worrying. She is like me, feels caged if held down by illness or accidents.

A day for me of cleaning upstairs and washing, nothing exciting. Knitting later, a hoodie for Jamie-Lee As I have finished the cardigan I was making her.

All finished.


A warm sunny day, I think Summer has arrived. Sorted out the greenhouse and the herb garden. A general tidy up as well. I still feel very drained and I am taking way more tablets than I should.


Not a good day. I feel very bloated no doubt because of the extra tablets I have bean taking or IBS. Out in the garden a bit, also cleaning up downstairs. A lot of pain and bad spasms and burning. Usually the pain gets a bit better in the Summer or it has in previous years. See if I can get in the Doctors tomorrow after Pilate's.


Pilate's painful again. At least I have less pain today or at least not as sharp. I called in at the Doctors and I can not get in till  Monday, then its some one I have not seen before. How are they going to know about my RSD, they are not. They have taken on too many new patients mostly foreign ones. So there are never any appointments. The receptionists say ring up knowing full well there are no appointments to have. Very frustrating, then there is the chemists as well, not able to get tablets that day, I have bean on for a long time, years..... Sometimes I think it might be worth changing Doctors and chemists, or are they all the same?


Physio I saw the Tutor- Jason , Nassen and Brinny (students), Three needles in left shoulder and six in right shoulder.  After a massage by Nassen. this was quite gentle. Very cold going home even though it was a warm day. My finger next to the little one went very white and painful. Not sure if this was from the massage or RAYNARDS. Fair bit of pain later in my shoulders.


Age UK lots of people here today very busy. Rained coming home and I bought an umbrella from pound shop, kept me dry, I think if it had bean windy it would have broke.

Tonight it's Elton John, I am really looking forward to seeing him. I have never bean to a concert before. I just hope my body will cope with the noise and vibrations. I hope the rain will stop too, as the concert is outside.

The night is great yes I did suffer but it was so worth it seeing Elton after liking him for so many years. He is sixty eight and still sounds great.

I have put the concert is on a separate blog already published.


Early hours of the morning I had a seizure, while in bed this woke me up and after a while Paul woke up. This lasted about two to three minutes. After I had severe muscles spasms in my legs and arms. These were worse on the RSD side. I took two BECLOFEN this seemed to help a bit. About an hour later I went to sleep. A seizure for me is exhausting. This I think was caused by the concert, But I would still do it again.

Not feeling too bad pain around the eyes, not sure whats that's all about. I feel very drained but that's normal for me.

Tommy-Lee is staying here tonight so that will be nice for me. Tommy-Lee is a great talker and will go on for a long time.


Saturday Nights Alright for Fighting". Awoke to a Black eye.

Paul said I had a black eye I thought he was joking till I looked in the mirror. My left eye is black and sore right eye is swollen but not as black.

 Paul thought I had had another fall or another seizure. I had neither. When I go to the Doctors tomorrow I will ask if this black eye is a result of the seizure as I think it is.

 Black eye from last nights seizure. I googled this, as I did not know this could happen after a seizure, it can.

 Tommy spent most of the day here and he said had a good time.


Fair night but I was awake a lot with spasms in my legs. My eye is quite black and hurts when touched.

We have got Jamie-Lee today after her Nursery School. We played all the time, outside and in. She enjoyed her time here and so did I.
 Having fun with the playdoe.

While I was at the Doctors-- She checked  my eyes and said the left pupil is a lot bigger than the right, apart from that the eyes look good, about a week for the swelling to go down. I know they are quite sore today. She said she thinks this because of the seizure as well..

 We discussed tablets and B12 injections the tablets are to stay the same. I wanted the OXYCONTIN to raised a bit, because of the extra tablets I seem to be taking. She said if after another month, and things are still as bad she will alter them. I don't really like taking any of them but without them I would not have a life. My B12 is to be every two months starting Wednesday. Hopefully this will help me to not feel as tired. I know a lot of it is lack of sleep, but about two months after the B12 injection I start to feel very weak and tired.


Pilates, this was good apart from the usual pain, quite a lot of spasms in my arms.

Just as I was getting ready to go for my B12 injection, the rain poured down. Sincil Bank, the way I go was flooded in places. the drains could not take the extra water. I did not get too wet though, sensibly I had an umbrella.
My injection really hurt this time, made my eyes water. Still raining hard on the way back. The B12   pain lasted the rest of the day. Hopefully it will be worth the pain.


Age UK was quite busy. Everyone asked about my black eye. A few funny comments as well, one man said did I get drunk and fall over, another said whats the other person look like. They were concerned too, or I think they were.

Bit of shopping then home. Tommy-Lee and Jamie-Lee are here for tea and stopping over night. Lindsay is having her big scan tonight.

Chinese for tea too they both enjoyed the meal. Jamie- Lee was good and settled to sleep quickly. I was able then to play a game with Tommy-Lee called Smaths this is like scrabble but with numbers. We enjoyed the game even Paul played a bit helping Tommy and me out. Like I said a good game. Tommy-Lee did not go to bed till about 11.30 hopefully he will sleep in tomorrow.


Jamie-Lee had a good sleep but seemed a bit moody. Tommy-Lee slept in till about 10am. He said he felt good and rested.

We are all going on the common with Summer, I asked Jamie to get her trainers on but said she wanted her canvas shoes on, the common is very wet and these would have bean ruined. She had a melt down and said I am not putting on my trainers. I said, not going then-- Tommy and I waited to see if she would change her mind but NO, No No she said. So Tommy and I went without her. Paul said she kicked up big time after we went getting her trainers on now. Too late Miss.

We came back and she still was mad with me but it was her choice. We walked down to the bridge which seemed to help.

Soon Lindsay and Ben were here for dinner. Sausage and chips all round home cooked of course, good too. Lindsay said the scan was awful and made her sick and a very bad head ache, it lasted about an hour.  After dinner Lindsay took Jamie-Lee home and Tommy and I went into town. We had a good couple of hours and he got some high top boots, a t shirt and shorts plus a hat and water bottle.
The hat is like Ben's so it made him laugh. Got Jamie-Lee 2 dresses as well.
I will go with Jay-Jay at a later date. A good day but not without the dreaded pain and extreme tiredness. A long day but at least we had a good time in town.


At Paul's parents today then on to my brother and family. Gary's birthday is tomorrow so we took him a card and present. They are all well and David is working hard, he is a Landscape Gardner. The weather has not bean the best for him though. Nice to see them all.

While there I got a high pitched sound in my ears, this lasted the rest of the day.
Steak for tea very tasty too. Knitting and reading rest of night.  Late phone call from Andrew he is here for a few days hopefully starting Thursday. This will be great as I miss him, with him being in Amsterdam, I know its not a million miles away, but its far enough. Saying that Wayne is nearly 2 hours away. This would not be too bad if the RSD did not play up when travelling. Lindsay is the only one near to me.

Still black eye, this is going down slowly though. Not as much pain around and in my eye.

                                                                  Black eye almost gone now


Happy Birthday to Andrew my youngest son.

Dentist today everything checked out OK. He took an X-ray of my teeth to see how they are doing deep inside the roots. Not really any concern there either, just a bit of white showing where it should not be. General wear and tear, he will check them again in six months.

Knees hurt today and shoulders as well along with the usual constant pain. Had a bit of a bad stomach with a lot of bloating too. Extra tablets don't help either.


Pilates went OK, quite a lot of shoulder pain. Made a cake for Andrews birthday as he is coming over for a few days taking in a few events here in the UK. This was not too bad but I have made better in the past this is by looks as not taste, we will soon see.


PHYSIO and ACCUE today I always look forward to this as it usually helps for a while.
Today same people as last time. Jason, Brinney, and Nassen.
I had 7 needles in right shoulder and 4 in my left. 2 in my back this is for INSOMNIA (well they can try.)  1 in each leg . These hopefully will help a bit with pain.. A massage by Nassen on my back and shoulders. Also a head one I have never had anything like this before. At times it felt like he was pulling my whole scalp off. Not really painful, but not pleasant, quite soothing in a weird way.


Sleep is not good at the moment, I know it never has bean for a long time. Just lately my body seems to think it can exist on about 3 hours a night, less sometimes, last night an hour and half. (So much for the needles for sleep) .I can get to sleep but not stay asleep for more than a few hours. People say I look tired and should get to bed earlier !!! If only it was that simple, unless you have had any trouble with INSOMNIA who have not got a clue what we go through. I have a friend who I have mentioned before, who gets ten hours a night and some nights twelve hours sleep. They say how do you cope, I DON'T KNOW.

Anyway its not going to go away I don't think so put up with it. On to Age UK. A steady day not with out it mishaps though. Calum was in charge as Nills was off for the day.

Things were pretty good till I filled up the filter coffee machine again. People asking for drinks and more people behind the centre than usual. I did the drinks and heard sizzling, I looked round and I had not put the jug under the brewing coffee. OH NO--- coffee everywhere. Lucky not much went on the electric plugs close by (too close by).  Everywhere else though, in between serving I was cleaning up the split coffee.  BUT it did- I soon learned, the over flowing coffee shut down all the electrics, the till, all the ovens, everything. Not the lights though. Not off long as they have a back up system in place.

Calum said he is pleased I only come in on a Friday, only joking he was, I think. We get on well. He said I am a walking danger. I got the sack twice and no wages this week?? Two minutes later he asked me for two teas, I said I thought I was sacked. The look on the customers face was a picture.   Apart from that---- the rest of the day went quite well. The usual accidents but nothing major. Quite a steady day.

Very tired and shaky at times. Lack of sleep can play tricks with your mind.


Andrew arrived in UK today, but not here till mid week as he has  an event in Peterborough. Paul picked him up from east Midlands Airport and took him there.

I have Tommy-Lee and Jamie-Lee for the day from 8-00am. Tommy is not well and Jamie is not right either both have bean off School. Tommy-Lee spent most of the day on the settee but picked up a bit in the afternoon.
We all watched Dumbo and Toy story after dinner, well me and Tommy-Lee did, Jamie went to sleep. She missed all Toy Story and half of Dumbo, Summer jumped up on the chair with her.

When Jamie woke she watched Dumbo, Tommy had a another sleep with Summer. Later Lindsay arrived to pick them up about 8-00pm I think, so a long day. My stomach is playing up as well. Could be IBS.


Spoke to Andrew the event is going well and he is being recognized by a lot of people.

I have got the three young ones again today but not for long. I have not seen Jay-Jay for a while so that will be nice for me and I am sure Summer will be pleased to see him.

Angela is also popping in for a while so a catch up on her week too.

I had the children again for a few hours. Tom is still not well neither is Jamie she was quite mardy today. At least I can pass them back to Lindsay, one of the joys of being a Nan.


Fair night got about three hours sleep. Andrew is here now for a few days and his belated birthday.  We were not sure what to get him, so I am taking him shopping while he is here.

Andrew with Summer before her haircut-- Scruff Pup


Summers hair cut-- she had got quite a heavy coat on her so must feel a lot better now. As usual she looks like a little lamb. She is so white, she has got a name from a few people on the common---
The Persil Dog.
She has not bean bathed yet so a bit mucky.

Jay-Jay had a bit of an accident on his bike and has a very swollen knee.  They are all here for tea a big Chinese. Very good it was too.

A lot of pain today mostly joints, with RSD being what it is, the pain can come and go all the time. Also the pain a lot of time is referred. Nerves are jumping  and burning like I am on a BBQ. I hate it with all my heart, its especially hard for me when I see younger people have it and how they suffer as well. The pain from HELL that's RSD.


Pilates, not too bad a session a lot of shoulder pain though.

Wayne has arrived here as well so all the family are together again. Good or bad ??

I know we had Chinese yesterday but guess what we are having another one today. Wayne's fault, he could not get yesterday.
 Andrew's cake I made was good too despite me thinking it wouldn't be....It soon got eaten be-for I got a picture .

Another enjoyable meal too. I did not have as much this time. My stomach is still a bit weird. Jay-Jays knee is very swollen but he said it does not hurt as much. he said he hit a big pot hole in the road which caused him to fall off his bike. Tom and Jamie are still not right. I think they have both had a nasty virus.


Not a good night, awake a lot, less than two hours sleep, I feel very drained and so tired

Andrew and I are going into town to get him his birthday presents. We did well and managed to get a lot of nice clothes and a few non clothes things. He was happy.

Wayne is heading back to Halifax as he was only able to stay one night.

Well June here and gone and the weather is not good a lot of rain and cold days. Come on Summer find your way here.

A mixed month for me. I am not sure if the ACUPUNCTURE is as effective as when I first started. Or it it just not enough of it, the massage is good most times. I know this pain is here to stay, but if I can make it just a little bearable I will be pleased.

The very best to you all Love Gill.   

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