These are some pictures of the trees on the common I took last month, the ever changing common.
November 2nd
The electric blanket does help me settle better at night. I think getting into a cold bed sort of re awoke me after feeling sleepy early hours of the morning. I don't feel too bad today but quite a bit of joint pain and spasms mostly in my legs.
3rd
Pictures today with Angela to see the new James Bond film Spectre. We got the deluxe seats, wider and more leg room and much more comfy. The film was over two hours long. The music started off very loud and I thought can I do this ?? When the film started, it was a better sound level for me. Why does it have to be so loud? What a good film, though typically Bond. My body coped better than I thought it would. For those of you not familiar with RSD -- Noise and vibrations can cause pain.
A good day with good company. We are going again soon with Sheila, to see The Lady in the Van starring Maggie Smith. looking forward to that all ready.
I feel better since I stopped the tablets (AMLODIPINE) but, the lozenges the Doctor gave me help my dry mouth and sinuses.
4th
Pilate's again this is going well and I hope to join the original class in the new year, I feel I am ready now. Okay there are still some moves I don't do- not because I can't, more of dare not. My arm came out the socket once and Jo had to put it back in so that's why I don't do them all. My hip joints are much the same. I just do a different move.
My knees are very swollen and hurt a lot. My shoulders are ultra sensitive also.
5th
Bonfire night-- a lot of bangs, Summer barks at them like she is telling them off. I don't think Summer is scared of them as she sits on the grass and watches them in the night sky. Firework have bean going off here for a least a week. I expect most of you are the same.
I have made two fruit cakes, not Christmas cakes, they will be made very soon.
6th
A flock of geese flew over heading south for the Winter, (what a good idea) they were making a lot of noise. What do they talk about ?? Left a bit, keep up and keep in line or something like that....
Age UK was very busy again, getting to grips with the new coffee machine. A lot more drinks sold today.
Sheila is back now so I am pleased, we work well together. Fair bit of pain and bad leg spasms through the day. Quite a few extra tablets taken today.
8th
Lindsay and family are here for tea. Gammon and all the extras, everyone said the food was good. I know the plates were soon empty. That pleases me.
Jay-Jay and Tommy- Lee would like me to make them hats, they saw the one I made for a friend and liked it a lot. I am knitting crazy at the moment. Dolls clothes, hats, gloves plus a few other things. Also Christmas cake making, I always say, just one cake for us then give in and make more for presents. Already made five and at least two more to do. I think people like them.
Not the best of days for me, light headed, dizzy at times. The weather here has bean balmy---- as warm as some of our summer days. About 15C or more at times. On the other hand we have had little in the way of sunshine, rain and fog, oh and a lot of windy weather.
10th
Today summer is having a trim, her hair is very long and she looks very scruffy. Summer fur is very soft and white not like a lot of Westies who have coarse fur and are a lot of the time more cream coloured. She is very good and stands like a show dog. The trouble was she was tired and kept sitting down.
Before trim--
--and after.
My friend Angela came to see me as well. A good chat, nice to have some one here other than family.
Later I met Paul in town and we did some shopping. I hurt everywhere spasms in my legs bad head and so much pain.
Later Jay-Jay and Jamie-Lee were here so Lindsay could go with Tommy-Lee to football. We had a late tea as Paul was at walking group. I set the table for Paul and I. When he came back with a Chinese Jamie-Lee went and got place setting for her and Jay-Jay. They had already had their tea, but not enough for her. Who can resist Chinese?
11th
Pilate's a good session apart from a bad head and a fair bit of pain. I think I am getting something, not sure what though.
Washing and ironing later. In the evening Paul and I went to see our friends Lyn and Mo, Lyn's Birthday is on Friday. I have known them since Wayne was born in 1979. The first meeting with Mo was when Lyn and I were in the same ward after having our babies. (Lyn had David) Mo came in to see her, and said Wayne looked like a toilet brush because he had so much hair and it was stuck up. Lyn was so embarrassed and told him off. I thought it was very funny.
Wayne a few hours old.
I now have a cold, very hot, cold, sweating and all at once. RSD does not need much to upset it does it?
Trying to work with it and get things done. Cleaning up made, stew for tea and another Christmas cake, so not too bad. Also a nice walk on the common. A better day windy and colder and best of all sunshine.
13th
Yes--a full blown cold now, at least my eyes and nose has stopped running, funny the only two things that can run at the moment. A bad head to start with but that calmed down later.
I decided to go to Age UK and if I did not feel too good I would come home. The day was not too bad. Everyone said I did not look too good but I did not feel as bad as the last few days. I was well dosed up with pills and extra MORPHINE. I did have a few moments though. The first one I was making a cappuccino and did not put a cup under and all the coffee went into the drain. A few mistakes on the till, rung in £100 instead of a £1-00. Lucky I did not finalise the sale. The customer would have thought the prices had gone up a bit. Also at times-- complete brain block.
Strange what the common cold can do, I think the extra MORPHINE also had a bit to do with it as well. Still I did not see things that were not there like I have have in the past. I got through the the day and went home to have a rest. I was pleased I was able to go in today and help.
14th
A wet day, Lindsay and I are going up to the Cathedral to see a Poppy display by Jay-Jay's School
Sir Robert Pattinson. Paul gave us a lift up there.
Out side the Cathedral.
Jay-Jay with his Poppy.
Jay-Jay and Tommy-Lee.
The Children lit a candle for a prayer.
Jamie-Lee.
A copy of The Magna Carta is here.
The three monkeys.
Lovely.
When we came out, the rain had started again also very windy and so cold. we walked back into the town and got some dinner, then home. A good day but a very painful one with a lot of burning in my arms and feet.
15th
Very tired today, but at least my cold is improving.
Tommy-Lee was playing football and they won 2-1. He scored a goal too, well done Tom. Also well done to the team- Hykeham Tigers.
Tommy-Lee looking very happy.
Doctors first thing more or less just to tell him about the tablets that I stopped (AMLODIPINE). We both agreed that I would not try anything else (These were hopefully going to help my circulation but they did not get the chance as they made other things worse.)
Angela, Sheila and I are going to see a film at the Odean Lincoln. The Lady in the Van starring Maggie Smith. What a good and funny film. Maggie is so funny with her one liners. Very much like her character on Downton Abbey. A good film and I highly recommend it. Sheila was laughing so much. Go during the day and its cheaper. Instead of going home I went back to Angela's house. An enjoyable few hours spent there, a very nice change for me. Her cat is very vocal and very lovable.
Chinese for a late tea. Very tired later but at least my cold has improved again. Also not too much pain today.
17th
Surprise visit from Angela, and my friend Beeston Bev. I like surprise visits. A good day for me.
Paul helped me make the last Christmas, as he is taking it to the ward he volunteers on. That's five big ones and four smaller ones.
Night time Jay-Jay and Jamie-Lee came here while Tommy-Lee was playing football. The team won again. keep it up boys you are doing well.
Jay-Jay, Jamie-Lee and I played Pop up Pirate and a magnet game. Both easy to look after this time. A good night apart from PAIN in my elbows, the right one was the worst. Shooting pains and just sheer PAIN everywhere, my bath helped plus a good helping of Tiger Balm..
18th
This is what Jamie-Lee did all on her own, clever girl.
She loves play Doe so much. When she plays with it here it get everywhere and very rarely stops on the table.
Pilate's went well only another four to go then hopefully I can go in the next class. I have enjoyed it here a lot and made a few nice friends.
My elbows are a lot improved today. Other things hurt though, shooting pains from my neck, ankles are swollen as well and my knees are bad. This RSD is so weird one day in agony the next not as bad. So mixed up and unpredictable.
20th
Age Uk- A sad day, a man who has cancer has so many problems he does not know where to turn. His life is sadly near the end. I had a word with the kitchen manager Nills, and hopefully Age UK helped him a bit. He seemed a bit better when I saw him later, he had a talk with an Age Uk worker.. Good on you Age UK. Another busy day here again. I am so tired. A bit of shopping then home.
At the moment Lincoln is chaos, roads up, paths as well and bridges going up, or that's the plan over the railway. Trains every few minutes stopping the traffic and the pedestrians too. The easiest way is to walk, then there are many new temporary crossing as well. Good when its all done, hopefully.
21st
Lindsay's not here today so a quite one for me. I feel very drained and tired, lack of sleep, pain, cold, change of weather, more like November now. None of these help RSD.
Night time after my bath, suddenly I went very dizzy, hot and sick feeling pains in my stomach. I laid on the floor and the room went round. This lasted a few minutes, I still felt sick but the dizzy feeling had gone. I looked very pale. Not sure what it was.
22nd
Not a good night, awake a lot more than usual. Paul said he did not feel too good either.
Another cold but sunny day a good walk with Summer on the common. Taking it easy today a bit of knitting and resting when I can.
24th
Acue at last. I found out today why my appoints have bean so long apart. The students need to get new patients so they can do case studies for their exams next year. No new ones are coming forward though, but they are leaving open the appoints for them. Hard for me but I suppose I have bean going a long time.
I go there as its a lot cheaper than another physio who is in a fully qualified position. I am charged £50-00 for 5 sessions this would be that almost for one elsewhere. I get about a hour and half.
They are fully supervised by a tutor, 2016 they will all hopefully be fully qualified.
So if you need a physio ring them 01522 876323 My next appointment is next year on 5th January.
The treatment---26 needles in my back, arms and shoulders after these were taken out a massage on my shoulders, arm and upper back- painful, but soothing as well. Preeti said my whole upper body was so tight and swollen. Then on my back more needles another 8 I think, with electric to my knees this was too high to start with and had to be turned down as it was causing too much pain. I hope this will help me and control the pain a bit.
25th
Pilate's, this went well but so painful at times still quite sore from yesterday. I managed though as aways, I don't give in unless I have too.
I ache quite a lot and my knees hurt, both swollen. My wrists hurt also but I think that's knitting.
27th
Age Uk again-- Sheila not here neither is Angela. Nills is on the till with me on the drinks. Very short of volunteers today.
The man I spoke to from last week is here also, he is feeling a bit more settled than he was. He thanked me for helping him last week. I said I was pleased I could help.
A very busy day, Nills said he did not realise how much work there was when on the front doing the till and drinks.
One thing I did though was not too good I hit my knee with the coffee measure (This I think is made of cast metal and heavy) I hit it on the side of the bin to get rid of the used coffee grounds, but this time my left knee was leaning on the bin. Direct hit very painful swelled up and was red for the rest of the day. Not to be out done my other knee joined in, also my right foot. I took some IBRUES for the pain. Not a good move by me. Apart from that a good day. I did miss the other two though. My shoulders feel lot looser today.
28th
Lindsay is here with everyone. Jay-Jay went to play zone with his friends later (An indoor play area for children and adults) He had a good time too.
I am playing with Jamie-Lee, pop up pirate and dolls. Summer got dressed up too, she did not mind one bit in fact I think she enjoyed it.
Tommy-Lee was playing computer games and talking to his friends on Skype. A good day but not without the dreaded pain again. I feel very tired, the sort that does not go away, even with sleep, mind you not a lot of that anyway.
29th
Not a too good night (bed about 3am) spasms and pain, I did not put my electric blanket on so a cold bed. Maybe that had something to do with it, who knows, RSD does its own thing.
Trying to make some PJ's for a doll in the afternoon. I managed to make some not bad but I think I will knit another pair. I will be putting some pictures up of all the dolls clothes that I have made in next months blog.
As I was getting out the bath later I felt my hip move out of place. This is something that happens now and again. Basically the hip joint moves a tiny bit out of place then shoots pain down the leg and up into my back. Usually walking and just waiting for it to move is all I can do. Sometimes it's days or even weeks other times its only a few hours. I will know tomorrow, not the best time for it to go either, late in the day as I will be stiff tomorrow.
30th
Fair night but as I thought my hip is very stiff and still painful. Hopefully walking will help it.
Walking is painful I can feel the hip clicking as I walk. Raining as well, Summer had her coat on too keep her dry. She does not mind though her back keeps dry but her belly gets very wet.
Well here I am after eleven long years with RSD. Yes its hard, yes its painful, frustrating and it takes over your life. It took away any plans I had for the future. Trying to cope with the pain, medication, hands and legs that do there own thing. What choice do I have--- I don't..... people ask me how do I cope??? I don't have a choice you have to cope or go under. I can't turn round and say NO THANK YOU to RSD..That would be good if you could. Harsh as it is you are stuck with it. What I make of it, is the difference. Things calm down a bit and change over the years, or DO they? Do I just get used to them and cope better.
Many people are in a wheelchair because of the pain and the deformities it can bring. I have fought this with all my strength. I have walked though the pain, cried with frustration and all that RSD brings. Music has helped so has pilates. It gives the brain something to do all the time, so it can not focus on the pain and spasms. This helps me a lot, through the years it has bean so hard, as you know from my Blogs. But I have done it so far. I think because I am a strong person- some are not and find it very hard to move around and cope. The thought of being in a wheel chair permanently terrifies me. I was on crutches for over three years, I use my wheel chair when I need to, also my scooter, more so after a hospital stay or a bad virus. Like it or not RSD is here to stay. My first physio, the one who diagnosed my RSD told me with RSD you "USE IT OR LOOSE IT" Something I have always have in the back of my mind and think about a lot.
RSD is not nice at all but there are worse thing to cope with in life like Motor Neorone disease. So as things go its cope-able, JUST. Also RSD does NOT KILL YOU .
Nearly the last Blog of the year. last blog of the year a new start and a new beginning for all of us next year.
ALL THE BEST TO ALL OF YOU AND A VERY HAPPY CHRISTMAS TO YOU ALL. Love Gill
Summer.
Ginge.
A merry Christmas from both of us too.
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