DOWNHILL DECEMBER

1st December

Today started with a bad headache. My ears are burning from the ear pins. Two have dropped out, Three are left. I think the RSD is reacting to them.

 

Three of my ear pins.

On the common while walking Summer I slipped, I tried to stop my self from falling and pulled my back. I now have shooting pain down my legs with a lump in the center of my back.

5th

Pilates- A lot of the moves were painful because of the pulled back but I did feel better later in the day. My daughter came with Paul to pick me up and had Jamie-Lee with her. Every one liked her. As usual she was hungry so a bit grisly. Another pin fell out so only one left. Bed late 6.30 am because I fell asleep for a while.

6th

Up about 8.30 I feel quite stiff back hurts this got better as the day went on. Physio - The usual questions and pulse taking. I think the team are interested in my RSD as they go on this Blog. Speaking to them I said what was done last week was a bit too much for me. (massage ear pins and acupuncture). They agreed.
Martin asked about the ear pins. I said its hard to say as every day is different. I did say my balance was a lot improved. Pain levels are a bit up and down. Also its very cold now. As most of you will know cold is not the RSD’s friend.  No snow here as yet but other places have some.

 This week Martin put pins in the other ear (left one) the ear went very red.

The pins covered with plasters.

 This made me feel very light headed and hot. I soon recovered though. They were very pleased as they did not want a repeat of last week when I had a blackout. A massage from one of the team, it was very soothing. She said I did not feel as tight in my back and neck muscles.  Later on I had a sick feeling and weird taste in my mouth. My ear felt very tender when touched.

7th

Not a bad night for me slept from 6am to 9am. I feel quite stiff but not too much pain. Ear a bit sore on pin at the bottom. I have a sick feeling still a lot of the time as well. Not sure if this from the treatment or something else.
My hip hurts today but I have bean doing a lot of walking. Took Summer on the common at the moment its very wet and muddy. She loves it and slides on her belly in the mud and water. One very mucky dog came home.

9^th

Today I had about the same sort of day as the previous ones. I think I am getting a cold or some thing as my throat is sore and I feel very cold a lot of the time but also very hot at times as well. I hope I am wrong.

11th

Not had a good night, spasms along with hot and cold sweating as well. I need to go into town today as well. Got too much shopping and just managed to get it home. I suffered for it pain everywhere - spasms, as well as shooting pains all over.
After sitting down for a while for a rest and cup of tea I got a violent headache and my nose started to pour with blood. This went on for a while.  I took some IBRUES   and this helped a little. My headache calmed down only to return more powerful later in the night. Not a good day.

12th

Pilates, even though my shoulder was very tight, it  went quite well. I was near the heater this week and warm . I kept saying it was like Bermuda. I was in the middle of the hall last week so was colder. My throat is sore but I don't feel not too bad.  Went to a party with the Breath Easy group, a health charity, my neighbour has emphysema and belongs to this. The party was not the best but we had an afternoon out.

Late night early morning I had a hot cold session. I could not stand, freezing cold to touch shaking so cold. My throat felt very sore and I had tight chest, so I went to bed feeling very strange. I think I have a bad virus or something.

 

13th

Got up a bit later. Throat like razors blades. I feel quite ill. Hot cold. I am at Physio today. I am still going as this session is the last one this year. Paul is taking me and bringing  me back. I will ask Martin if this session is ok with him. Martin was also bad with a sore throat and cold symptoms.

I am pleased to say the session went ahead. A needle in each hand  Fire Cupping, like jam jars that are lit and placed on my back, they form a suction the fire goes out and stays warm. This felt very nice and warming to my back like  a hot water bottle. Martin said this will help to warm me up. He said I felt very cold to touch my RSD side a lot colder.

After a few minutes break, Martin and the team put in some more ear pins, 5 again this time the right ear. Some hurt a lot and again made my ear hot and red.
After the session I croaked good bye and wished them all a good Christmas.

I had got a Doctors appointment straight after. I was surprised to learn I had bronchitis.I used to get this a long time ago.  Also a throat infection virus thing. I received a weeks worth of antibiotics EYRTHROMYCIN 250mg, 4 a day. Later that night I coughed and coughed, bringing up a lot of gunk and hard lumps. Looked a lot like the contents of Jamie -Lees nappy. Not good for a very sore throat.

14th

A very restless night chest tight and throat like it bean cut. I have not eaten since the Party. Even Water is hard to swallow. My back still feels warm from the cupping. The RSD has picked up on the pain and making my day very painful . I feel so very cold even in bed my whole body shakes because of it. Apart from my back that is. I was told I might have some redness or bruising. I was not affected by this.

I had a tiny bit of tea, mashed potatoes and carrots and mince. This was very hard to swallow even with sips of water. I had some at least.  I had some Collagen, a high calorie drink, to build me up so I don't loose too much weight. Later in the night I felt very warm I don't know if this is the infection or the cupping which ever it was, it's nice to feel warm for a change.

15th

Another bad restless night  awake most of it. Still coughing and bring up more gunk. A good note a lot of people I know are saying how good my balance at the moment. No more falling into door way or into people. I think this could be the ear pins. But with RSD I never really know.

18th


Got up and had a bath just doing this tired me out completely. I had to sit down for a while. I feel a little better I think the pills are helping. Later on I made the Christmas cake, with a little help, although I think I may have been the helper.
The cake turned out nice, brandy was added. Actually quite a bit of brandy was added. The smell is lovely.

19th

Today I feel quite a bit better but quite week. I have lost 4lb in weight and still not eating much. Everytime I am ill my appetite just goes and takes a while to get back. I should have bean at Tommy-Lee's play. I even gave up pilates to go and then I was ill.  I also missed Jay-Jay's play as well. This made me feel very sad.

Summer had a bath as she was so mucky... 

 

 Before the bath.

 

Just look at the water.

 

 All clean.

The common is all wet big puddles churned up by the horses and vehicles. With her being small and white she will not be clean for long. My hairdresser and her  husband (they got married only recently so I keep forgetting and saying boyfriend) are here for tea. We had a Chinese which was very good but I did not eat much. Everyone had a good meal and enjoyed it very much.

21st

A couple of friends called to day. So that was nice. Caught up on all they had bean up to. Sorting out Christmas presents the rest of the day. Finished off the monkeys for Jay-Jay and Tommy-Lee. Jay-Jays was made and ready to be stuffed then  I realized that I had forgotten the ears so a quick adjustment and finished. They even got a scarf each, very smart monkeys. The last day of my Antibiotics I hope they have done there magic.

23nd

Up about 9am. Baking a Welsh Tea Loaf for a Christmas present. Went onto the common to watch the club cross country. Saw a few people that I used to run with. I came away be for the awards were given out. This still hurts as they are doing what I want to. Out taking Christmas presents later,  so a long day.

Early hours of the morning I felt very strange and started to sweat. I think the infection is still got a hold of me. I felt like I had not taken my MORPHINE but I had and was going into with drawl. The day had bean long and tiring one though.

25th

Christmas Day.

No snow as we thought we would have a few weeks ago. Andrew here as well. Lots of presents. Lindsay and the boys here for dinner. Another good day but very tiring. I still have 5 ear pins in but they need to come out very soon. As two weeks is about all Martin tends to leave them.

28th

Wayne is on his way from Halifax to stay for a few days. So the whole family together the first time for about 9 months. Wayne arrived safe and Will is here too. They are going to one of his relations for tea but they will be back later.

Nearly the end of another year what will the next one bring?
My year has bean very mixed, good and bad. Some things have improved though. I know with RSD there is not really any help so its up to me to find any thing that will help.

All the best for the new year!
I hope you all continue to improve or at least not get any worse.
Gill.   

MAD NOVEMBER

November 1st

Physio today. Usual catch up talk with Martin and the students. Martin had a look at my back and discovered my spine is not straight. I have one vertebrae at the top and one at the bottom out. I was quite surprised as this had not bean picked up before. I have know since my early twenties I had a slight curve to my back. Nothing more than that. When he pressed it it felt very sore. He thinks this is adding to my problems especially the neck pain that affects my shoulder and shooting pain down my arm and also the blackouts I get.

He went on to explain that the top vertebrae controls the neck, top back and shoulders. The bottom one my hips. This makes a lot of sense probably the only sense since getting RSD. Hopefully acupuncture and massage will help this.  He said there are no guarantees.

On we went with the treatment six needles this week ears, hands and feet and a very good back massage by one of the students.

Later that night a lot of pain. Shoulders very sore and tender.  Hopefully I will feel the benefits tomorrow.

4th

I ache a lot still very tender on my shoulders and back. I have blisters on the under side of my RSD foot I get these a lot. They are very sore and burn. When they burst it spreads them.

Despite this I went into town to get the Lego toy models, free from the Sun newspaper for Jay-Jay and Tommy-Lee. I know I feel better if I can just keep going. I know this has helped me to beat the RSD and kept me out my wheelchair and scooter. A lot of the time it fights back harder than me.

5th

B12 done today (morning) I now have these at two months intervals not three. This stung a lot and I could still feel it at night time. My balance is not good today I an veering to the side almost like I am drunk. Joints are very painful, the pain if some one just touches me or brushes past is crazy.


7th

Pilates, I managed most of the moves but it was painful. My joints are very sore. I had my hair cut and coloured yesterday very good it looks as well. The washing machine has decided it wants a holiday as its not working right.

Still taking a bit of extra morphine but not as much as I have bean. Too much makes me feel bad not able to fusion, as well. Also a far away feeling. Also I look  drunk or drugged, it does work well most of the time. This drug was never meant for long term use.

8th

Physio

Martin and the team did acupuncture on feet and hands. He went on to look at my back  He was very gentle but I don't need much pressure to start the pain off. Martin said my shoulders were like planks very solid and rigid. When he pressed on my back it sent a shooting pain like an electric shock down my arm to my fingers. Two of the team did a nice but painful massage on my back. They said a lot of knots were present. After all was done I headed off home. I felt very far away and felt people were looking at me. I was also very cold.

Later on a lot of pain and spasms. I did not take MORPHINE but IBRUES instead these helped. Back and forth between cold and hot most of the night.

13th

Every part of me felt very sensitive today. Joints still very tender. I knocked my elbow on the door frame and I think that started it off as the pain levels went to a strong ten. Later in the day I knocked my RSD foot and again intense pain. Hot and cold most of the day. Pale as well, more IBRUES. Another dizzy spell in the bathroom I had to lay on the floor. I was quickly joined by Summer who snuggled up to me.

15th

Physio

Usual questions by the team. Twelve needles in all - two in back, two in each of my feet, legs and hands. Also four in my ears two in each. I asked him about my spine and what could be done. He said he would help all he could with massage and Acupuncture. He said too much pressure like chiropractic or similar would not help at all and cause me more pain. I agreed with him.

The plan was to go straight home but Paul phoned me to get some rubbing wax from town. Wax bought, I headed for the bus. The one I usually get was full so was the next one. Finally on the bus about half an hour had passed. On the bus I was getting flashing lights the same I have had before but worse. Then I realized that it was a sign in a shop window, relieved. Very tired and in some pain arrived home.

After a while, Paul realized I had lost the Wax. The bus had shot forward and that's when it must have fell out the bag.  I was not pleased it cost about nine pound and worse of all I had made a special journey to get it. I rang the bus station it was closed. I will try Monday. I felt that part of the day was a waste.
After my bath later I felt a lot better. A bath always helps pain and muscles. I wish I could stay in longer but the RSD plays up and causes pain. After getting out I felt dizzy again and nearly passed out. I am sure this is some thing to do with my neck cutting off some nerve or other when bending down.

16th

Had a day out at my friends it was her birthday earlier on in the week. A good day it made a change. A lot of joint pain. 5-6 rising to 8 at times. Bad head as well.

Washing machine has now bean fixed and working right.

17th

 Lindsay here with the gang.

 Jamie-Lee.

Summer keeping watch.

 Pictures of Jamie-Lee,  she looks like a little Shepard.

 Jay-Jay  and Tommy-Lee were playing hangman and this is what Tommy-lee did-- Jay-Jay could not get it. Tommy said it was easy.

 

Can you guess what it was?
PUR PIY-- Jay-Jay could not.
 It was Pork pie. Like Tommy-Lee said Easy!!

Tommy-lee loves Pork pie and him and Lindsay often pinch Pauls.

22nd

Eight years today since my dear mum passed away. I never got the chance to say good bye.  She spent most her life looking after other people and there lives. When it came time to look after her own life there was no time left. I was told over the years this would get easier. This is not the case. With the grandchildren here now even more so, they would have loved her and my Dad who passed a few weeks later.  He would have said, they were rum lads.

22nd

Took Summer on the common with he ball this does not happen very often, because it causes me a lot of pain throwing and kicking it for her. Summer got very excited. She loved it and got very mucky but she was happy. The common looks very pretty at this time of the year don't you think?

 Summer in the picture.

The common is very wet but so pretty with all the trees golden brown..


Physio

Catch up talk, then needles. Martin again did some light presses on my back . This made me feel very spaced out and dizzy. I saw quite a few Martins. I soon recovered and there was only one Martin. A nice massage from two of the students. I think they are realising they have to be extra gentle as not up upset the RSD and cause me more pain.

Going home the far away feeling again. Knees are very sore on the inside. More joint than muscle.

23rd

A better day than the past few I have bean having. Pain levels 5-6 spiking to 8 at times. My eyes are very dry and sore using a lot of drops (SNOTEARS) they help a lot. Today I have about fifteen naked men in my kitchen...but I'll mention that later.

24th

Fair night. My body feels like one of the Wooden tops (a 1960's childrens program) very stiff, shooting pains through out my body. I have taken a lot of IBRUES too many. BUT I am still in pain.

Lindsay is here with the boys and Jamie-Lee. Jay-Jay and Tommy-Lee are playing up. Jamie-Lee is also unsettled. Not a good day.

Tommy-Lee is playing with the scalectic car set and Summer is chasing the cars. Very funny.

 Tommy-Lee with summer.

 

 Let me get that car.

 

Keep still while I get hold of you. 

 

  Summer Moss is the name, car racing is the game.

26th

My back feels like someone has wrenched it apart and put me on a stretch rack. My head ache has calmed now a bit though.

 Sincil Bank is very high with all the rain (small drain that flows off main river)

 Poor ducks.

Last picture is of the drain be for all the rain taken on the 22nd.

The water levels have just gone up and up because of the rain we have bean getting. We are better off that some areas. Some have lost every thing in the floods.

27th

Not a good day I feel very down. Pain spasms just about every where.  I just wish this pain would go and not come back. People with other things get better even terminal illness. I am left to suffer this. I know other people do as well, but I bet most of them feel the same as I do.

Gave in and took extra  MORPHINE , I know my body craves this. As usual this took some of the pain and spasms away at a cost . Too high to care not able to think properly as the amount I now need to take goes up every time.

Saw Dr Metta later in the day. He has increased my GABBERPENTIN to 3x300mg in the morning 2x300 at dinner 3x300 at night. An extra 900mg a day. He thinks this will help as it will relax my body as well.
The rest of the day a blur not able to function. If this does not help he will increase my 12 hour MORPHINE OXYCONTIN. I hate to be all this stuff but I think its the cold weather that's making me worse.

28th

Pilates-
I did my best quite painful but hopefully it will help loosen up my stiff painful little body. Bad head again. Sore eyes too. Later on a bit looser. I know pilates help, but at the time it can hurt a lot. Jo is very understanding as she recovered from a painful illness her self. She gives me alternative moves when I am struggling.

29th

Physio again this soon comes round. Today Martin did the usual needles and had some thing new for me to try. Auricular acupuncture ear needling. Little pins that stop in my ears five in all. They look like ear studs type you used to get with pierced ears. The hurt a bit going in but no more than the acupuncture itself. My ear felt very hot and looked red.
 

These are the needles that were in my ears. Two have come out. I did not get a picture when all five were in. I know Martin did. I might still be able to show you.

 

 Picture that Martin took, with three ear needles in. Two more went in after. I have found out that a lot of celebritys for various reasons use them,  pain, addictions plus various others things.  


 

Later when having my massage I blacked out, bad head and away with the fairies. I have taken very little extra MORPHINE today so that is not the cause. The team and Martin looked after me very well it must be a little scary for them having some one black out. Martin said it would best if Paul picked me up. I was very unsteady on my feet and very white and cold.

After a sit down I felt a little better. I think these black out are getting more frequent. Late pm early am I felt a lot better but very tired. Had a bath and went to bed about 5.30.


That's the blog for this month. As you can see a bit mixed. Hope you are all having a good spell. For those who were thinking, the men in the kitchen were Action men figures.

Love Gill.

OCTOBER-MORPHINE MADNESS

October 1st

Today I spoke to the physio that hopefully will help me, I'll be going on Thursday afternoon. I am not getting my hopes up as in the past I have bean let down. I must say this one sounds a lot more hopeful. I know he will be in Wietse' shadow but it will be a new start I hope.  I will soon see.

I am very tired, a lot of pain as well. This started when I had a cold and never really settled down again to a manageable level. Also the weather has changed a lot colder  - RSDs enemy. 

2nd

Saw my Doctor he said he has not bean able to get me any more physio. I told him about the one I am going to see. He said he hopes it works out for me. More tablets; the same this time and a big bottle of back up MORPHINE. A bucket full might have bean better.

3rd

Pilates-fairly good session. Jo showed me some more alternative moves for when I am not able to do the main group ones. This helps me a lot and I don't feel like I am left behind. I have bean getting a lot of pins and needles in my feet. Not nice on its own but added to the pain makes it  almost unbearable.

4th

Not a good night a lot of pain in my legs. Balance bad. I came back from the common and  took some MORPHINE. Martin a Physio from the local University has agreed to take me on. My first appointment is next week 11th. Good news at last.

5th

A lot of PAIN again! Tingling feet, spasms everywhere. Night time I had a bath and felt light headed and had to lay on the bathroom floor.


6th                                                                

This is the day when Jamie-Leigh should have arrived, but as you know she was born a month ago and doing well. She weighs 5lb 10oz now.

  Yesterday I made Tommy-Lee a late Birthday cake for his sixth birthday.

 Tommy-Lee

Jay-Jay with a large slice.

 Jelly babies on a beach with Pirates after them. Jay-Jay and Tommy-Lee had asked for this theme last week. They thought it was great and tasted even better.

8th

Woke to a bad head and joint pain just about everywhere. More MORPHINE - it seem to be taking a lot more of this lately. I know it works and relaxes my muscles at the same time. What I don't like is my body is getting used to it and will want more every time. We are stripping off the wallpaper in the dining room, its not coming off too good.

10th

Not a good start, was woken by a spasm in my left calf that struck before I could stop it. It went right to my neck. I think this happened because I did not wear socks to bed last night. My feet were ice cold when I was painfully woken up.  I usually where socks, but because my feet were hot so I did not wear any. If they get too hot I get the RSD burning pain. I can't win either way can I!?

The day did not really get any better very sensitive joints and a lot of pain. Guess what more MORPHINE. Pilates did not go well either I had to be careful how I did the moves so I did not go into spasms. My hip was not behaving either, trying to come out of joint.

The draught excluders I had made for the hall where we hold pilates were too small so I will have to redo them. The day did not get any easier more pain and spasms. Shooting pain in my neck. I tried IBUPROFEN for the pain but did not really help much so took another helping of MORPHINE.

11th
  
Physio at last - I am seeing Martin and a few students at the University. (I took MORPHINE before I went as in more pain than usual) Lincoln University is set along a railway line some on one side some on the other.  I walked down, I then  realised I was on the wrong side. I asked a student, there was plenty around, how to get over. I had to go across a bridge that took me over the railway lines. After that I soon found the place.

 Martin introduced me to his 7 person team of 2nd year students. I told my story from the beginning, a few tears flowed. They listened with interest. None had met anyone with RSD before, or even heard of it. No surprise there. A lot of questions and answers followed. Nice to have some one listen. My pulse was taken by two of the students. I had to stick my tongue out as well a number of times.

Martin put in four ACUPUNCTURE needles, two in to each lower leg. My RSD leg was not amused, straight in to a spasm. Two students gently felt my foot which was cold but not ice cold. My body temperature was playing up as well very hot then cold. More question and answers..

Martin thinks they will be able to help me. Pulse taken again. The pulse is taken  before and after the needles are inserted as this changes the rhythm and strength of the pulse, adjustments can be made if needed to the needles. Needles removed. Martin then said it was time to move along. I had bean in there two hours!.  I was given a check sheet of  things to look out for after ACUPUNCTURE .

I left the building like Elvis, and felt good. I am going back next week for another session. This will be where my treatment properly starts. I felt relieved. Finally, I am getting some treatment that should help me. If it does I can reduce the amount of pills I am on. I know I have to pay as the National Health Service (NHS) does not provide this any more long term - "it's too expensive".

12th

Today I am going with Lindsay and Jamie-Leigh to the hospital where she was born to get her blood tested for high thyroid levels. She tested high for this when she was born. They stuck a needle in her tiny hand, she squirmed a little and went to sleep. The test takes a while as the blood needs to drip in a little pot. Jamie-Leigh just laid there looking so sweet. The Doctor and Nurse were so surprised they had never had a little one go to sleep like that. Test finished, we are to come back in about an hour for results.

Went to a cafe near main reception to have dinner. While there a nurse we know, saw Jamie-Leigh and sat cuddling her - she did not want to give her back. She knew she was small but was still surprised how small she actually was. With Jamie-Leigh prised back, we set off back to the ward for the blood test results.
They were not ready. Lindsay will receive a phone call when they have the results back. Had a cup of tea then headed home.

13th

Lindsay and the children are here. The boys are playing up a bit. I decided to make cakes and biscuits with them. Keep them occupied. They love making things and they usually wash up. They all turned out well. The biscuits were not cooked when they left, so they will get them another day.

Still pain and spasms. The colder weather is on its way I dread this as even in warm weather I can be cold and cold usually means more  pain. Too hot can mean pain as well but I know cold is worse.

My hips are very bad lately. When walking in the past with one hip playing up, I have bean putting my weight to the other side. But what do I do when both are as bad as each other. I waddle like a duck and take more pain pills. This month so far has hot bean good for extra pills and MORPHINE.

16th

Today I am out for the day at to visit a friend, Bev who lives in a town called Beeston. About an hours journey on the train. I wish the buses were as smooth running.  I was met at the station. Then we went for a cup of tea at a little cafe nearby. It had a lot of old pictures on the wall, a very nice place to stop and linger.

After we were both refreshed, we went for a walk along the marina footpath looking at the boats. A very windy day. Soon the pain started as we had walked a long way so headed back to the car.  After dinner we just sat and talked felt a bit strange very light headed. When I stood felt even more so and hot and cold; cold to the point of shuddering. RSD strangeness again.

Met her husband Dave for the first time we have spoken on the phone but never met. He was a very nice man too. All too soon it was time to go to get the train. By now it was dark. All aboard the train ready for off.

This was a weird journey as the train kept stopping. There was a smell of burning and the ticket collector kept getting off. Not a good sign - the journey took half an hour longer. Once back in Lincoln I headed for home. We have railway lines across the main street that close about every ten minutes in peak times (most of the day and some of the night). This cause havoc with cars and pedestrians as no one moves.  The gates were closed a least ten minutes . A man jumped the gates as he could not wait, risking his life as he did. The people stood were singing why are we waiting. At last the gates lifted and we were all on our way.

A day out can and does cause me a lot of pain, but I try to not let it stop me from doing things I like. The day I stop doing this will be the end of me as I am.

Lindsay has got Jamie-Leigh registered  now and her full name is Jamie-Leigh Rihanna Ruth. Ruth after my dear Mum. I was so pleased. Thank you Lindsay.

18th

Physio-This week more questions and more needles, eight this time, two in each foot and two in each hand. My RSD foot went into a spasm straight away and a lot of pain RSD colour as well, showing its dislike of being disturbed.  This settled a little.

Hot and cold body all the time. Martin explained that the needles would hopefully cool the foot and help with pain. My left foot did feel cooler. My right was still rejecting the needles. Finally it did calm down and I think felt slightly different but with RSD its hard to tell as it's so changeable. After the needles were removed I went on my way into town. Back next week.


19th

Strange feeling in my RSD foot it felt very weird. I will tell you how. As I walked along I could feel vibrations like I was on a travelator, (flat escalator like at airports) this felt very strange and a bit scary. My foot was very hot. Was my foot changing with the physio - only time will tell but never the less it was  different.

Later on my foot was very swollen hot and painful. After my bath whole leg RSD colour. Then I bathed Summer as she has bean charging through the mud puddles on the common. Now she is snowy white. As you know with Summer it will not be for long.

21st

A painful day again, more MORPHINE I felt a little better after the morning walk with Summer. All the wallpapering is done and looks very nice. Now to get the carpet and the curtains sorted.

22nd

Up later than normal this did not do me any good at all. I felt very stiff like I had bean in bed for days. Five hours! But sadly not asleep all that time. I think my body was in shock. The pain never really went much either all day. Paul and I went looking for curtains but was not successful.

Late pm/early am I had bean sat on Paul's reclining chair with my feet up at a angle felt quite good not too much pain. I was able to watch television for a while without squirming around. When I stood up both my feet, toes pointing upright  and legs went into violent spams. I managed to get my toes to go back down. When this happens its very painful. I have to be careful I don't make it worse by  stretching my foot or leg too much and spreading the spasms upwards.

I think this happens because my circulation is not good and combined with all the other stuff means a lot of tightness every. Most people have had cramp in their legs at some time or other. Well multiply the pain a few times and that is the pain I get on a regular basis

23rd

Another painful day. This often happens when the weather turns colder. Sometimes for no reason at all.

People ask me what the pain I experience  feels like. I say they are many different types I get. In my joints it feel like someone is hitting them with a lump hammer and so very tender. If some one just touches them I nearly hit the roof. Tingling electric sock like pains. Ants crawling over my skin mostly shoulders. Tight pain of spasms as just mentioned. Pain when I walk.

The odd thing is I get as much pain in my shoulders and as, arms I do in my legs and hips when I walk. Varies from bad to extreme pain. Also if I experience pain say in my left foot because of dropping some thing on it. The pain will always go to my RSD foot as if to say "don't leave me out". Add the temperature changes as well and it not a nice time with RSD.

We have now got curtains and seat cushions. Carpet has now bean chosen and ordered.

25th

Physio & acupuncture - Martin and his team were there to meet me again. A few questions about any affects from last week. I told them about the feeling in my foot (19th). They are very interested.  Pulse taking, tongue sticking out. My right leg had a few spasms as well.


The students put marks where they think the needles should be according to the  acupuncture points. Martin then checks to see if they are right. He then puts the needles in, twelve this time, two in each hand, foot and two in each leg around the knee. The knee ones hurt a lot. My RSD side (right) reacted a bit but not too bad.

When the needles were removed my legs had gone the typical RSD colour -  blotchy, red and purple. A few more questions then time to go.

I bought a few bits in town, home on the bus this time. I felt quite tired and my knees hurt other wise good.

26th

After the Acupuncture my right leg RSD one has swollen up my trousers are tight. My knees are very painful also. A lot more so than usual.

Dentist at 10.45am for a filling that dropped out after flossing the other day. Injected with Lidocane. This made my whole face very numb. The filling went just fine not too much pain. I did get pins and needles through out my body though. The feeling in my mouth did not come back till about 8pm. 

27th

Lindsay here today without the boys, just Jamie-Leigh. She is doing well and weighs 8lb 4 now - about the size of a newborn.

Jamie-Leigh Rihanna Ruth

The high thyroid test she has came back positive, but she is within reasonable limits so nothing is to be done for now. The hospital will keep a special eye on her and she'll be regularly tested.

At night we stripped the old dirty wax off the dining room chairs. A hard job then re-waxed them. Wax on wax off, like Karate Kid. Very hard work made my arms and shoulders hurt. Good old Morphine helped, took so much was almost high. Painted the radiator as well.

28th.

Another busy day more waxing, more pain. Getting the room ready for the carpet fitting tomorrow. Everything out the room.  Last coat of paint for the radiator. My shoulders and arms feel like they have bean stretched to the limit. So painful. After a bath they felt a little better but had trouble getting out because I could not put any weight on my arms. Bed at 5am.


29th


I don't think I have moved all night as still wrapped in the quilt under my shoulders. Up about 8.30. A lot of pain and stiffness everywhere. Paul rubbed IBUPROFEN GEL on my shoulders,back and knees. This helps the pain settle a little. My knees have not settled since the ACUPUNCTURE session last week sore and still very tender. Extra MORPHINE does the trick. Another fuzzy wuzzy day.

A quick trip into town to get some free Lego toys from The Sun newspaper. I try to get these when I can as Jay-Jay and Tommy-Lee love putting them together.

As I write this the carpet fitters are here doing there job and very soon we will have a lovely dining room again. Just have to put the stuff back in after it is washed and polished. 

Well another post, another month.
Hope you are well.
Love Gill.

SEPTEMBER-AUTUMBAL

First of all let me say a sorry, for the September  blog being late. I decided to put it out a bit later  so my Amsterdam, Jamie-Lee, and Doncaster Wild Life Park could get a few more views.

 Here we are in September. All ready the leaves are turning brown and dropping off the trees.

September 1st

Back home after a fair sleep in my own bed. Foot is swollen and sore after twisting it in Amsterdam.
Summer is back today Lindsay and the boys are bringing her.
She came in like a tornado. High fiving me and so excited to see me. 
The boys said she had bean good and they all will miss her.

Lindsay is carrying the baby very low so I do not think she will be long before its here. Due date is the 6th of October

 I think Summer was pleased to be home though. I know I was, its always hard travelling for me  and walking around  places that you don't know, always getting lost..

Next door had a barbecue and she invited herself so most of the early evening she was round there.
I took her for a walk and even though she was tired she went straight back there. Her friend Manya was there. A golden Retriever a lovely dog.

2nd

I am making some  head cushions for Pilates. They are not going right and the material keeps rolling into an annoying mess. I persevered and got them ready for machining.

I went to see the next door neighbours Ben and Cilla. They said they had missed. They both as well as they can be.

3rd

Not a good night forgot to take tablets so body went into withdrawal. I hate what I have to take, as it makes me an addict. The day did not get any better. Spasms and temperature changes. I must carry on as going into town to get to get Jay-Jay and Tommy-Lee some new school shoes
 Not a good day regarding pain again.


4th

B12 injection these are now two months apart now, they were three . Not too much soreness and pain afterwards.
 Spasms and very sore behind the knees. These RSD symptoms are so weird its like I have almost made them up.
  At  least my ankle is getting better now, most of the swelling has gone. Still a little bruised.

When I took Summer for her walk at night it was a beautiful sunset. The sky was bright red, beautiful.

  5th

Pilates a good session I think. I know it was a lot better than it has bean.  A lot of spasms in my arms and legs. Some how I have a bruised back , quite sore. I took Jo the cushions I had made. She was pleased with them.

6th

Today I am going to Wayne's and Wills in Halifax to look after Timmy, there cat, while they are on holiday in Florida. Paul took me. Journey was quite good, pain towards the end. We had a very large (for me) carvery for dinner at 2pm.  I was so full I did not eat any more that day. So good though.

A squirrel in Wayne's next door garden.

7th

A fair night for me up about 7.30. I am going to tidy and clean  a few cupboards for them. Even though I am having a few days break I still need to keep busy. Looking after Timmy, he is a big cat and does not like too much fuss. He did come for a stroke and a play with me and his toys though and sat with me a lot of the time.

Timmy in the sun.

Early morning (2.30) I got a call from Lindsay, her waters had broken so baby was on the way. A month early. 7.45am another call the baby had arrived , a little girl no name as yet and no known weight.

 

 

 She had just delivered her after a very short labour.  Lindsay went in about 6am . How nice I said it would be a girl and early. More  pictures on Jamie-Lee  Blog.

Did some shopping in Halifax town. Home very tired thought I would watch a DVD  not as easy as I thought. All the system is wired into the computer and sound system. So many remotes. Wayne was on skype so he  sorted it out for me.

The baby is to be called Jamie-Lee Rihanna she weighed 5lb 2.5oz  Now I will have to wait till I get back to see her. Lindsay did send me a picture on skype so that was good. A pretty little girl..

10th                                                                                                                                                                             

                                                                                                                    
Supposed to be going home today but woke to a violent head ache, My balance is not good so a steady day.  I will be stopping another day. I think Timmy is pleased.

Timmy

I felt better in the afternoon after I went for a walk.

 

 

 Views

A very unusual looking cat that was asleep in a front garden.

 Also  did a bit of knitting . I have bought some pink wool to knit a cardigan for Jamie-Lee.,                                                                                                                                                                                                                                                                                                                                                                                                                                                                              
11th

Home today- I have enjoyed my time with Timmy cat. I have helped Wayne a bit as well by sorting a few cupboards out and a bit of cleaning. A nice change from home.

The journey home  was  good not too much pain.
After a rest off to see Jamie-Lee. She is so sweet and tiny. Well worth the wait. They are both still in Hospital but doing ok. Hopefully home soon.




12th

Pilates a lot of spasms and pain. The weather is getting colder now, not RSD friendly..  But what is ??

Lindsay and Jamie-Lee home late afternoon.


13th

In town today to get more cloth and foam to make more pilates cushions. The rest have sold or are being used by us so more needed.
I feel quite tired and drained, I hope I am not in for some thing. More like the last few days at Wayne's and the journey I hope!

14th

Not good news- Jamie-Lee has tested positive for Thyroid problems the same as Lindsay. This might be from Lindsay feeding her or when she was in the womb. Lindsay needs to keep an eye on her and watch for her eyes bulging not feeding or any thing that does not seem right. She still has direct access to the ward where she spent her first few days. So that must help Lindsay feel a little safer.  Another blood test will be done in a month. This will prove more accurate.

A lot of PAIN today hips and back are the worst. Extra Pills

15th

Lindsay and the  boys are here with their new little sister who they are so proud of.
She looks a little yellow and still has a bit of jaundice. Otherwise she is doing good.
When I was in Halifax I got  Jay-Jay and Tommy-Lee a present a BMX stake board set with ramps. A play with one not play on type. They thought it was GREAT. Lots of hugs and kisses.
Summer had a look at Jamie- Lee  She thought she was very nice and sat guarding her most of the day. Summer loves children and babies. She had not seen one this small though.

The little boy  (Ben)  from two doors away came round to play as well. They were all happy and  had a good time.
Pity I was not the same I ache like I have the flu. A lot of extra MORPHINE and IBUPROFEN as well. Not a good day.

18th

Still a lot of PAIN the walk on the common was not good very tight and stiff everywhere. More pills.
As the day wore on I loosened up a bit and the pain lessened.
I was able to get  on and do the cushions for pilates. These went a lot better practise  makes perfect.

Wayne arrived late evening. He has come to stay for the night so he can see Jamie-Lee and of course the boys and Lindsay.
Lindsay  says Jamie-Lee is very yellow and  might need to go back in hospital for a while. The midwife is keeping a special eye on her.

19th

Pilates-This went well, the best for a while a few spasms and pain still, but I know I will always have pain. Gave Jo the cushions, 2nd lot she would like some more as well. No problem I said will get the stuff and make another set soon.

Wayne went to see Lindsay and Jamie-Lee. He said she was so tiny. He did not hold her, but will when she is bigger .Wayne was here for the Afternoon then headed to the station to get his train back to Halifax. Paul took him to Newark station. So good to see him if only for a short while. He got to see the new baby as well so all good.
 
Lindsay and the boys are going to the fair so Jamie-Lee is stopping with me. This is the first time Lindsay has left her so a bit apprehensive. She knew she would be safe with me.  Off they all  went to the fair to have a good time. Summer is laid right next to Jamie-Lees Moses basket looking after her. After a while she woke up and decided she was hungry. Lindsay is feeding her so no bottle to give her. I cuddled her for a while and she was happy, Then she was starving, she is very strong lifting her head up and throwing her arms around.  Lindsay was soon here and she was fed, one happy baby.
Lindsay calls her fat face after a feed.

The boys enjoyed the fair  very much, having rides and they won a sword set each. So they too were happy. Off they all went home to bed.

21st

I have an appointment with the physio I had acupuncture with earlier this year. This only a review on what has being going on since I last saw him.  After talking for a while he asked me what he could do for me. I said a massage would be nice. He massaged my very tight  shoulders and neck. Quite painful, when Wietse used to treat me, he cared, because he was more than a physio. This massage felt like he did not care. no reassuring words like  Wietse. I know Wietse was a once in a life time dream  and I was so lucky to have him. I know I will never find another Wietse.
After the massage he asked about my RSD foot I said RSD was not just in my foot. HE SAID RSD DOES NOT SPREAD. I said what do you know about RSD he said not a lot. How can you sit there and say RSD does not spread when I am the proof. I was very angry almost in tears. He said there would be no chance of any more physio with him as he had a years waiting list . He said maybe I should reconsider the Lidocane infusions for my FIBROMYALGIA. I said no one has bean able to tell me what it would do to my RSD. So I will not have it done It could make my RSD worse. Unless some one has some answers for me. 


I was not too bothered about what he said about physio. If I get more physio it will be with some one who cares a bit more and hopefully understands RSD. The acupuncture I got from him earlier in the year was good though.


22nd

Lindsay and boys and baby here. Ben from two doors away also here I think he saw them arrive. I said he can come round for a while. Jamie still a little yellow but the midwife is pleased with her. The boys have both got colds so not good for Jamie-Lee.

I hurt a lot from yesterday physio took MORPHINE
We are out tonight for a meal with my brother David and sister in law Bev. A carvery was decided on. A very good meal and nice to be having it with them.
But guess what a lot of pain and spasms the sort that have you squirming in your seat. Very painful. Took  more MORPHINE. This helps but can make me feel sick.


23rd

Took Summer for her walk and when I got back Russ and his Mum were here with the children.
An extra bonus was I got to go with her and look around the Cathedral. A very lovely place to see. We had a  cup of tea and a teacake in the cafe,  all very nice and unexpected. A very nice afternoon.

24th

Summer had her haircut and bath she  looks very sweet and so clean, but not for long.
Cleaned upstairs something  was going to do yesterday. Pain still not good. Too many spasms.


25th


Spasms are very frequent and strong, 20 going down a short walk from park to common. A lot of extra  pills.
Went to Lindsay's to help her out a bit. Poor Jamie-Lee has a cold and is quite poorly and very unsettled. The midwife is checking up on her, and so long as she keeps feeding and it does not go on her chest or get a temperature she should be alright.


 26th

One of my friends daughter has had a baby girl Ava Violet. Both well.

Pilates- Kill or cure today as a lot of pain and dreaded spasms. I hope pilates will  help loosen me up.
I managed quite well in the end and did feel better after I think.

Paul's birthday went for a meal at the Phoenix a Chinese restaurant across the road from us even though it has bean open all the time we have lived here we have never bean. A very nice meal it was too.

27th

My friend Bev is here for the day. She told there might be someone who could help me with physio and acupuncture More about that at a later date.
A good day, walked a lot but was feeling quite good.

28th

Dentist for a check up. I have a little wisdom tooth that has bean hurting on and off. The tooth might have to come out but that will be a hospital job. I think RSD affects my teeth as well. Why not it gets every thing else. Check up apart from that good.

Went to see some friends ended up stopping for tea, a stir fry very good too.

30th

A good note to end this blog , the bit I mentioned about some help with physio might be coming true. He is looking at the blog and RSD and letting me know. May be some help at last.

Well that's September blog a good bit to finish on hopefully it will happen

All the best Love Gill.

Jamie-Lee Rihanna

Jamie-Lee Rihanna.

This a just an extra little blog to tell the world about my new little granddaughter Jamie-Lee Rihanna who was born on the 8th of September a month early. She arrived on Tommy-Lee's sixth Birthday. He was very pleased with his extra present.

8th September

Got a phone call from Lindsay about 2.30am. I was in Halifax looking after Wayne's cat while he is away on holiday, Florida, Disney World no less. She told me her waters had broken and it all was going to happen today. She did not get pain till later so just stayed at home going in about 6am. Two of her friend were birthing partners. (They help Lindsay while in labour). Jamie-Lee was born at 7.36 after a very short labour. She weighed five pound two and a half ounces. Lindsay was delighted

Jamie-Lee was cold to start with but did not need to go up to intensive care just a transitional ward where they keep a special eye on the babies. Mostly premature babies and babies that just need a bit extra care. Lindsay also well she said she did not feel like she just had a baby more like a dream.

Andy, her boyfriend and Jay-Jay and Tommy-lee were delighted with there little girl.

She had a feeding tube put in because she was not taking enough milk  other wise she would loose too much weight. Lindsay is breast feeding her. Just about all babies loose a bit then put it back on but premature babies can lose too much. I think its the effort of being born.

9th

Paul went to see them both. I am still in Halifax. First pictures of her.

Lindsays friend, Tracy who was there at the birth.

1oth

Jamie-Lee had go under the lamp as she has a bit of jaundice not uncommon in premature babies.


11th

I am coming home today so will be able to see Jamie Lee and Lindsay.
She is now out from under the lamp.

She is tiny, new born clothes are too big. Andy has got a few tiny baby clothes that are not too bad on her. I know some babies are a lot smaller even half the size but a lot need intensive care so she was lucky.

New born suit laid next to Jamie-Lee, who is in the tiny baby size.

Me and Jamie-Lee.

Lindsay and Jamie-Lee.

12th

Jamie Lee had a blood test to see if she has thyroid problems like Lindsay. She will know in a few days. The feed tube has bean removed so if all is well when the Doctors come round they both can go home. She has also bean weighed, four pound ten ounces now so a drop thats normal. The Doctors are pleased with her progress. So homeward bound.

Hopefully the start of good things to come and fun times too.

14th

Jamie-Lee has tested positive for thyroid. This might still be passed though from Lindsay blood or she could have the same. Another blood test is to be done in a month. This will prove more accurate.

I wish them all a happy and settled life.
Love Gill.