A change from the same day in day out. I got a phone call from my friend Bev saying she was coming to see me. I phoned Lindsay my daughter and she said she would come round as well as she could thank Bev for the Birthday present she got Jamie-Lee.
So nice to see Bev, I have very few people come to visit. Jamie-Lee thought it would be fun to tip over Summer water. So one very wet baby and she had just had a clothes change.
A good day for me- about time I had some good ones I think.
2nd
Pilate's was a good session a few spasms and shaky in my legs. I did alright, I managed to stand on one leg at the end.
Physio- First session of new term. Quite a big session as well, in all twenty needles, placed like this-
six in my neck three each side- two in each wrist- ten in lower legs five in each. Also MOXA again one each side of my knees as I had done in a previous session.
The neck ones did not go down very well and I felt spaced out. The Physio said I was slurring my words as well. I did not realise this. This was quickly taken out. I soon recovered.The right side of my body hurt more than the left side, this is the side most affected by the RSD.
The treatment is for pain, balance and sleep, well they can try.
Walking home my knees hurt, headache again. Very tired as well. Late night early morning a crushing type of headache, NOT nice at all.
4th
Took my bike back to the repair shop. They had a go on it they think its the new controller being a lot more powerful than the old one, so it's giving out a kick of power. Also with me being not very heavy does not help. I think I will get used to it. that's if I can get on it to try. The days I can go on it I seem to have balance problems or too much pain. When I am ok the weather is against me.
I still feel very tired but not able to sleep much. My legs are very hot RSD burn you all know what I mean.
Made Tommy-Lee and Jamie-Lee's Birthday cake they always have the cake late as they get one on the day from Lindsay. This one is a little different as you will see when finished.
5th
Finished cake looks good I think Tommy-Lee and Jay-Jay thought so too. Jamie-Lee did as well but I think she wanted more to bash it up.
Jay-Jay, Tommy-Lee and Jamie-Lee's initials on the cakes.
Lindsay and family plus Ben.
The cakes started dropping off.
Tommy-Lee all smiles.
Hey look at my new bed. Summer won't mind.
Jamie- Lee is now walking everywhere very fast. Too fast for me
Jamie- Lee is now walking everywhere very fast. Too fast for me
Cilla next door was let down by a friend so I ended up pushing her in a wheelchair to the hairdressers. Not easy but that's what you do to help out friends. She was so grateful and pleased.
Went to the park with Lindsay and family, plus Ben from two doors away. They all had a good time- a nice day. Ben liked the cake as well also the taste, he took two home.
Better day for me quite a bit of joint pain and swollen knees.I am sure the RSD just makes the pain up for the fun of it.
6th
My arms and shoulders hurt a lot, I think from the wheel chair pushing yesterday. I went over on my RSD foot which has retaliated in a big way, with pain and extra swelling.
A nice surprise today as well, the lady I made the teddies for Dianne, brought me some roses and carnations. Int that nice.
Cleaning up and cooking tea.
8th
A sunny warm day nice. Hips fairly good. Also shooting pain again from neck up to head. This is made worse if I look up or turn my head.
Summer had a bath very white and clean. She got lots of comments from people we met on the afternoon walk. Now the day light hours are getting shorter we have to go for walks just after tea or mid afternoon. This makes a very long night in. In Summer we could go on the common quite late. So a shorter night.
9th
On the common with Summer throwing her ball for her. After a while I am in too much pain to throw any more so I sort of kick it, when I did my left foot decided to go into a spasm, toes curling under foot. Very painful with the spasm shooting up my leg then full body. My whole body felt like it had bean hit by a electric shock, a lot of pain. Just as suddenly as the pain started it stopped- just like that. My foot swelled up and within the hour was very bruised.
Pilate's went ok considering my foot. Some of the moves I don't/can't do, the ones that I need to stand on my toes or hands above head. Either of these I would be in terrible pain and spasms. I do alternative moves. I was even able to do the leg balance at the end. A good session for me.
A sandwich and drink then of to physio. Talk and usual pulse and tongue observation. Both students agreed that my tongue looks a lot better. A lot can be learnt from looking at the tongue.
Last weeks treatment worked quite well we all thought. So this weeks is going to be much the same. Well a bit less because of reaction to the neck needles. Two ear seeds in left ear as well. Less painful than the pins I have had in the past. My ears are still bruised. A needle was placed in my left hip and one in my left leg. Hopefully this will help the pain there. After they had done there job more needles in my lower legs five in each. Also two in each wrist these really hurt. I was told they are very close to the carpel nerve so it made sense. I have problems with both wrists, carpel tunnel syndrome. The left one was very bad causing my fingers to go tingly and numb with shooting pain. The student was going to take it out but before she could it was pushed out. This was repositioned and felt a lot calmer. Sixteen in all, my whole body was tingling and felt strange, almost like small electric shock going through.
I hope they will all help me in some way. I know this is not a cure but if I can find some relief from this RSD I will take it with both arms wide open.
I left, felt quite good balance good knees a bit sore. I did a bit of shopping then home.
10th
Pain and very tender from hip to knee on both outer sides of legs. Legs are cold with a few hot spots. Otherwise not too bad pain wise.
Walked with Summer to doctors to get tablets. Someone stood with her while I went in to Doctors so she was not crying. When I went into the chemist (we are lucky the chemist is next to the Doctors) and left her tided up. She howled and cried like I had left her for good. There was a long wait so I decided to go back tomorrow. Summer was pleased.
11th
One year today since I started going to the University for Physio.
After Wietse went back to Holland I never thought I would be able to a build up a relationship and trust again. This has bean harder for them as they had not seen RSD before and most not even heard of it. This has helped me a lot. I know some days I am still bad, But they are working with DEVIL (RSD). I would like to say a BIG thank you to Martin and all his team. Without you all I know I would not be as good as I am now.
I also look forward to another year with my two crazy physios now. They cheer me up on bad days and make me laugh, who in a years time will both be qualified. Thank you both very much
13th
Lindsay and family are here today for dinner. Christmas dinner as Tommy-Lee calls it.
Every thing went well and the boys ate a good amount, so did Jamie-Lee. She is now walking properly and fast too. The boys played and I think had a good time. When they went home I walked so far back with them and Summer. Very windy and cold.
14th
Fair night. Cleaned up down stairs, this takes me most of the day. My knees hurt when walking and neck still shooting pain up to my head. I wish it would all go away but there is not much chance of that is there? I feel very drained today exhausted I think is the word. Took out ear seed no problems there.
15th
Went on a bike ride at last to try it out bike. (To pilates hall.) I think the pedal-tec (Pedal assisted) is going to be alright. About a thirteen mile round trip I did feel quite pleased with my self. I know the bike does a lot but still my legs still have to pedal most of the time. Quite cold and windy again but at least no rain.
16th
Pilate's What can I say pain, spasms joints feel like they have bean ripped apart at times.
I found it also hard to concentrate almost like Jo was talking in a foreign language some of the time.
I found out yesterdays bike ride that I took the longest route there. I had it written down but did not take it with me. Never mind I enjoyed it. Next week Paul is out for the day so I am hoping to go on my bike to Pilate's.
Walking to physio cold wet, and windy. Usual checks and talk I told them how I felt mentally and physically. They both said I looked very tired. I am having the same two students for a while. I said I was past tired. Having to cope with twenty hour days plus, does no one any good least of all some one with RSD.
The treatment went like this--- On my stomach as needles were going in my head, the same spot that I had a reaction to on the 2nd October. They were not taking any chances this time. As I was flat less bad reaction hopefully. First, one needle in my left ankle and one in my right wrist. When the wrist one went in I had a strange feeling it felt like pain from my ankle whooshed up to my wrist and visa- versa almost like taking to each other. Next came the head ones these were put in and I felt pain and pressure. One a very strong reaction to my eye it felt like my eye ball was being pushed out and a lot of pressure around my eye brow. This was slightly in the wrong place, but it shows ACUPUNCTURE works. When the needles go in I tell them the reaction I get not the other way round. Sometimes I don't get much reaction other times a lot.
I am trying to relax and let the needles do there best. The needles were taken out. I had a walk round to ease the stiffness in my body. I started shaky as feeling very cold.
Then as the student said, flipped over like a pancake, on my back now. More needles one in each wrist. Not too bad. Next three in each lower leg. The left side hurt more than the right this time. I am very cold, towels are put round me. This helped so did a fan heater and I was soon warm again.
A lot of RSD people have trouble with regulating body temperature. Soon the needles came out. I hope this session helps in some way with sleep and pain. Well that's the end of another physio.
Going home I felt very cold and a far away feeling. Still raining and blowing cold, Winter weather for you..
I went on my way, a bit of shopping then home. My head feels tender so does my right wrist. Once home I felt very drained of what little energy I had left..
17th
Fair night after physio slept for three hours but interrupted sleep. Fair bit of pain in joints and neck. Quite light headed. I know from past physio, relief can take a few days. So I am still hopeful things will improve.
18th
Four thirty just gone to bed. Still awake at five, turned my head and a powerful spasm in my neck and head, managed to get out off it and settled to sleep! No, another much more stronger spasm followed. this one shot from my neck and quickly took over the whole of my head. This went very tight and I could not move or speak my jaw was frozen. This made a crunching sound when I tried to move. I laid very still and did my breathing just like Wietse had taught me. If I try to move or fight it the spasm can spread and go whole body if I am unlucky. After a while my neck and head loosen off. I fell in to an exhausted sleep.
About two hours later I was up again. I feel like I have bean hit by a bus. (I know what that feels like because I did get hit by a bus a few years ago). Everywhere aches I feel light headed with spasms, in my legs as well now.
19th
On my own today as Lindsay and family not coming. Not a good day sat a lot of it and knitted. I am making little hats for Age Uk. /http://www.ageuk.org.uk/get-involved/raise-money/get-knitting-for-the-big-knit/
I am moving about but very stiff everywhere. A lot of IBUPROFEN. This helps a bit. I have gone back to normal GABAPENTIN now, six a day. (I had reduced it to four).
Lindsay popped in for a quick call, she said I looked very pale and tired.. One good thing I have finished off Pooh-bear that I was knitting. Quite pleased with it not an easy one to do.
Hello my name is Pooh bear.
A weird thing happened, while as was sat down knitting. I felt like the bottom half of my body was not there but at the same time spinning, but not dizzy spinning.There was no sound and I felt very strange. This lasted only a short while. Black out maybe???
20th
We are out today at a local show, Newark Robin Hood Game and Country show. Summer is going too.
One of the students told me about it.
Jay-jay would love this car.
Say where did you get your hair done?
Later we sampled sausages, Summer loved that and kept wanting to go back for more. We had a giant hot dog each, Summer shared mine. It was white bread and I suffered later. IBS
There was plenty to see dog racing, dogs performing and Fly balling very fast dogs race in teams get a ball from a box at the end and race back. Some were very fast some just wanted to play but they were still learning. (No pictures bit too fast.) A lot of noise, too much for me, caused me pain.
Wooden carving these were very good and looked so real.
Are you a pony from the common?
They gave small children rides.
These dogs did tricks
Another pink dog must be this year colour.
Moving on, jousting was next very good.
We lost.
We won we won.
Dog and duck followed, this was very good it was like the sheepdog trials but with ducks. the handler had two new ducks that did there own thing but he had just had them two days. He worked three dogs one was very young.
The two older dogs.
Down the slide we go.
Didn't we do well-Good game good game.
The young pup.
21st
Not a good night awake a lot with pain and spasms. A lot of shooting pain in my neck the sort that make you jump almost out of your skin. Also pressure in my head. I did a lot of walking yesterday plus the travelling so extra tired today. Resting as much as I can and knitting a few more hats.
Ben the little boy who comes to play with Jay-Jay and Tommy-Lee sent this after receiving a present and Birthday card from us for his sixth Birthday. The little girl is Emmi his sister. Lovely thank you Ben.
22nd
Still a lot of neck pain a bit swollen on the left side as well. I used a hot wheaty bag this seems to help.
I have done all the little hats now thirty one of them. I think they look quite good.
23rd
A big day for me today going to Pilate's on my bike ,about six miles each way. Now fixed I can use pedal tec. Going there had another blackout thing. My arms felt like they were not there and I had no handle bars. Very weird.
Pilate's was a bit mixed some I could, and do them well, others my legs would not stop shaking or kept going into spasms.
Biking back no problems. A quick sandwich, and off to physio. My eyes are quite sore and gritty it has bean quite windy.
Physio---
One of the students just touched my left shoulders as I went in this caused a lot of pain.
After the usual catch up talk the treatment started. First needles in my legs three in each below the knees. Two follows in my hands. The legs ones were very powerful and caused my right foot RSD one to go in a massive spasm with my toes curling under. One was adjusted and another added to my left leg and all most straight away the foot relaxed a bit. The tutor came in to put two in my head one each side. WOW this was mind blowing. I felt like I was in a trance like state and felt like I left the couch. Almost like you see on television, someone takes hard recreational drugs for fun and how they sort of become a zombie instantly.
I could hear voices but not make out anything. This calmed down a little. I was asked to lay back and try to relax. Still in a weird like state my mouth went cotton wool like and very dry. After a while the needles were removed, next I was flipped as one of the students call it and work on my neck and shoulders started. She even made a hole for my head to poke though the protective paper bed roll. My shoulders were extremely sensitive and very tight. They both massaged very lightly one side each, a lot of pain and they asked if I wanted to continue I said yes as I could feel the muscles beginning to relax. They used a tool called GUASHA. They were going to cup me but felt that it would be too painful for me to take. After all finished I felt very cold and shaky. Thirsty as well. My shoulders and neck felt very warm all most hot more relaxed though. Eyes sore as well. Red cheek on the right side this comes up with pain. The same student touched my shoulder again and there was less pain. I sat in reception for a while drinking water. Walking home I still felt spaced out but to use my hair dressers phase-- a doughy like feeling. I hope this helps as its one of my most intense ones yet.
24th
I still feel a little spaced out but shoulders are a lot more relaxed. A lot of pain while walking Summer, in my shoulders and shooting pain in my head and neck, this is normal for me it often takes a few days for my body to calm down after the treatment.
Jay-Jay and Tommy-Lee are here later to stop the night so no peace later.
Also at last I am having my hair done. Do to illness and working Helen my hairdresser, had to cancelled a few times. Left side of my head very sensitive while Helen was cutting it and when colour was applied it felt very strange, tingling and cold. After a while things calmed down and washing my hair was no problem. The finished result was very good as usual. Thank you Helen.
Jay-Jay and Tommy-Lee watched with interest while Helen worked.
25th
Going into town with the boys. They like to go around the charity shops for books and unusual things.
Some time later armed with books, and a few bits for Halloween plus a top each. I got a plate with a dog like Summer and a cat like ginge.
Best of friends.
We were all quite tired when we arrived home.
Lindsay came later with Jamie-Lee. She was pleased to see her brothers.
26th
Out tonight for a birthday meal with a family friend and a few people. A good time even the pain behaved most of the time. I did hurt a lot towards the end of the night. Bad head as well. Clocks go back an hour tonight so an extra hour up. The night will be even longer now, days shorter- dark about five o'clock now, may be earlier.
27th
Very windy here and we have storm warning in place for this area. So a few rough days ahead.
Cleaning the bedrooms and changing the beds. Not too bad a day headache for most of it and pain in shoulders and neck. I have had worst days though. So long as I can keep going thing don't get too bad or this is what I tell myself.
28th
Not a bad night. Cleaning up downstairs. Painful shoulders but neck is loads better, was it the needles or the special massage. I managed to hit my head on the fire surround quite hard. A big lump came up straight away. Quite painful later it in the same spot that I have bean getting the shooting pain.
We missed the storm but a lot of people did not, floods, power off, trees down and two or more deaths. Not good- Mother nature is still in charge.
Summer is at the vets tonight for her yearly booster and check up. Everything fine at the vets. She also got chipped. Hopefully this will never be needed but its a good thing I think to have. She yelped a little but seconds later it was all forgotten.
Chipped, not chips Wayne.
29th
A day out today. with my friend, Bev last time I went there the train broke down, so I had to get on another train unfortunately this one did not stop long enough for me to get off. I could not get the door open. So I arrived at Bev about two hours after I should have. This time all was smooth sailing. We had dinner at a local deli very nice home made soup and ciabatta with salad, I had. Bev had soup and a cake. We had a look around the shops then back to Bevs. Catch up on things over a cup of tea. Too soon it was time to go back on the train. I wish Bev lived nearer as we have a lot in common. A good day very tired though.
30th
Pilates went well for a change a few spasms not pain free quite but a good session probably the best for a while. This new hall is a lot warmer so I think that helps now the weather has turned colder.
Physio: Much the same treatment as last week. Five needles in left leg four in right one in each wrist two in my stomach (hopefully to help constipation since eating white bread last week) and two in my head put in by the student watched over by the tutor, fifteen in all. Not the same mind blowing affect as last week but still tingling and pain with spasm in RSD foot Next a massage GUASHA again as I felt this did a lot of good also hands on massage. Very soothing and warm again. A good session again. After I felt quite cold again even more so walking home. Legs and feet have bean burning for the past few days underneath my right foot (RSD one) the worst.
Someone who used to live in the street that Lindsay had kept in touch with, had come for a visit. He was involved in an accident earlier this year and badly broke his ankle. Guess what, he has RSD, the first person I have ever met since getting it nine years ago, trouble is he lives in Spain. Still we had a good talk.
31st
Flu jab today hope I am doing the right thing as I have bean strongly advised to have it since getting flu in March.
A dull ache all over, knees are sore more so the left one also left hip. My neck and shoulders are a lot looser after yesterdays session. My neck is very unstable, just turning it the wrong way can send it into spasms and pain. Right shoulder is very sensitive as well.
Flu jab went well no reaction as yet (7pm) I feel alright.
I have bean teaching myself to crochet with the help of You Tube, what did we do before it. I have bean making a practice hat for Jamie-Lee.
I think it looks quite good on Summer, but she looks quite sad-- maybe she wanted to go Trick or Treating.
That's just about it for the October blog hope you enjoyed reading it. A few comments or questions would be nice if you could. Hope everyone is having a good month.
A dull ache all over, knees are sore more so the left one also left hip. My neck and shoulders are a lot looser after yesterdays session. My neck is very unstable, just turning it the wrong way can send it into spasms and pain. Right shoulder is very sensitive as well.
Flu jab went well no reaction as yet (7pm) I feel alright.
I have bean teaching myself to crochet with the help of You Tube, what did we do before it. I have bean making a practice hat for Jamie-Lee.
So sad- I wanted red.
I think it looks quite good on Summer, but she looks quite sad-- maybe she wanted to go Trick or Treating.
That's just about it for the October blog hope you enjoyed reading it. A few comments or questions would be nice if you could. Hope everyone is having a good month.
Thank you all Love Gill.
