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. 


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.


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.


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.


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.


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.

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.


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.


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.

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".


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.


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.


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.


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.


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.


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.


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


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.


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.


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. 


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.


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.


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.

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