June 3rd

Physio- Wietse put in the usual needles he said my muscles were very tight and my body stressed. There has bean a few things going on so that's probably why. Not too much bleeding today.

Went back to where my phone is in the river, but now it cant be seen . I called in to see my hairdresser and she said someone she knew was willing to try to get it back. A while later we all gave it a good go but the water had risen a great deal so it was dangerous to go in. It was good of them to try.
I am still getting a lot of pain in just about every joint I have got, more so when I am not moving.

A rough night with pain and burning. Lindsay and the boys are here today. Lindsay has not bean well. Played with Jay-Jay and Tommy-Lee most of the day and I'm really tired after last night lack of sleep. Hopefully tonight will be better.
I have IBS and I am finding just lately things I used eat with no problem, upset my system now. One of my favourites, a cream cake, is the latest one.

Late night/early morning. My body feels like it is on fire intense burning and a lot of pain. I gave in and took OROMORPTH. Maybe its because I am tired or am going to get a virus or some thing. I don't know yet. I could just be over doing things.

I went to bed at 4.30 and got up again at 6.30 after no sleep, the OROMORPTH had made me itch plus it did not really help the pain. So much for sleeping tonight.


We (Paul and I) are decorating Andrews bedroom. We are finishing putting the wallpaper on the walls today. So far it looks very good. The room has not bean decorated for about 11 years. So it was in need of doing. As you can imagine I am very tired, falling asleep stood up. However when I sit down to rest, the pain starts again and its as if my brain says no sleep for you. My eyes are very sore also. I have a big problem with very dry eyes and use drops. ( SNO TEARS). Had about 20 minutes in my chair then to bed about 2.30. The pain seems to have settled a little. Hopefully for a while.


I slept till just after 7am. Nearly 5 hours sleep, that must be a record. Did I feel any better? No I felt very light headed and had a headache. I think my body was confused as this does not usually happen.

A year today ago today I lost my little Sandy ( my little dog) When she passed away I felt I could not or want to go on. Then in September we got Summer Snow She made me feel there was life after Sandy but it took time it was not instant.
I gave Summer a bath she looks so little. It seems she needed one, the water was black.

After she was dried and brushed. A very different looking dog.
Clean, but not for long.

She is a little digger and seems to go in all the mucky places. So she does not keep clean for long. After she was dry we went on the common with the sun on her she looked like an advert for Persil (gets your whites white). Just as we got back it started raining very hard, so we were very lucky.

Later on I went for a run a bit hard going as I have not bean for two weeks. I met some one I used to run with she was so pleased I was running a bit now. I explained as we ran together that it was a bit hit and miss when I could go.


Just lately I have bean having extremely cold legs and arms and a lot of the time cold body I am so cold some times that it is painful. I even put my vest back on to see if that would help. At other times so hot but freezing cold to touch. Its like having a mini flu all the time. I know this is part of RSD but its getting worse and worse. I am at physio today so will be asking Wietse all sorts of question about temperature changes. I asked if it will improve at all. He said he could not answer that as RSD does its own thing. The sensitivity is back with vengeance as well more so on my legs even the blanket I cover my legs with hurts.
Sometimes may be I don't take enough pain relief but I try to make my body work for its self.


Did a few things in the garden. Andrews room is about done new carpet to be fitted on Friday.
My temperature seems to have settled down a bit, so has the pain but the sensitivity is still bad. Two out of three is not bad. Summer is going on the common most days now. She loves running around and meeting new friends. So do I. Sleep is no better I think my body has decided it does not need it any more.


Very warm day had my shorts on. I can see quite plainly that my right leg (RSD) is a lot bigger that my left one. I am getting quite a lot of pain in my legs again. I think the common could have a lot to do with it as its very undulating. I could take Summer down the river side but then she hurts my shoulders a lot. As she needs to be on the lead more. I think the common is the best bet. I enjoy it a lot as well . You can just get lost in your own little world on there.

Laid in the warn sunshine a bit and got my legs burnt. I went for a run early evening it went well. Later on the RSD really played up it felt like I was inside a very hot fire. My legs still felt cold to touch. RSD is crazy. You could not even make these symptoms up. I dont think getting my legs burnt helped at all though.


Pilates again it has not bean on for two weeks. Everything was good, a bit stiff in some moves but on the whole not too bad. I have bean doing a bit at home but not as much as I do in class.
Temperature changes are very wild today hot and cold swapping all the time.


When I was on the common I twisted my knee very painful. All the way round I was in a lot of pain . When we got back I used a lot of BIO FREEZE that helped. In the afternoon I went to see some friends they know a lot about Healing stones and crystals it was fascinating to listen to as they told me what each stone can do. Some are very pretty. They lent me a book so I can learn a bit more.


Physio again - I asked Wietse about an allergy tablets for my hot cold changes if it might help. People are some times given them for heat rash or to stop itching. He said they might, it was a case of suck it and see ( his words). I will be seeing my Doctor soon so will ask him. Also my right hip is higher than my left putting my walking style out (what style) . Wietse measured my legs to see if one was longer than the other and it is by more than usual limits . He suggested a small heel rise in my left shoe that might help with the hip pain also. He did the usual needles, and as always bled from the ear and neck after he had taken the tissues away even though he stood there a while waiting to see.

The carpet is now fitted in Andrews room. Now it looks complete there are a few bits to finish off but on the whole it is done. Over the next few days the furniture and Andrews things will go back in. I still have the curtains to make as well.

My daughter Lindsay and the boys are back from there holiday in Spain they look very well and tanned. Lindsay is very brown she makes me look like Snow White, so is Jay-Jay. Tommy-Lee is not as brown, but he said all the sun went on Mummy and Jay-Jay and some on Daddy and not him. The holiday has done them all good. I am getting a very sharp pain in my neck shooting up the side and middle of my head I think its a nerve trapped or some thing like that. My wrist and right hand is swollen also.


Spoke to Andrew on Skype this morning it is his 23rd birthday his first away from home. We had a sort of breakfast together conversation. We have got him a new mobile but he will not get it till after his Birthday as its still to be delivered. This Birthday is very different from any others for him and me.


Pilates - Went quite well some of the moves made my neck worse. The weird thing is I never know which movement is going to make it hurt. I sat down to put on my shoes and a pain shot from my neck. There are not many places left that I do not get pain now, some worse than others but still more than I would like. That's the problem with RSD there are so many horrible types of pain. Then there is all the other things that cause me pain also. FIBROMYALIA and OSTEOPOROSIS just to name two. Its hard to know which pain is causing what. I think a lot of the pain can be caused by another pain, say from the FIBROMYALIA which upsets the RSD, then it does not know when to stop. Stress also plays RSD up big time. My right knee is also quite painful and still swollen. Sensitivity is also bad at the moment the slightest touch can hurt me a lot. Even a paper on my knee sets off a horrible stinging burning sensation that's not nice at all. RSD which ever way you look at it is EVIL.


Physio- I told Wietse about the extra pain I have bean getting. He thinks it might be an inflamed nerve in my neck. He put some of the needles in different places to see if that will help. They did not hurt as much this time also I did not bleed

I am trying to get by on the tablets that I take every day with no extras. Some days it is not too bad others terrible. I do give in some times and take the extra MORPHINE as I know it will help.
When I went to bed I could not lay on my left side as my head was very sensitive and quite painful. Not the shooting pain as before.


Lindsay and the boys are here with one of there friends. I showed them Andrews room now that it was finished. They thought it was cool and asked if they could play up there. I said they could as it was going to be their room as well when they come to stay the night. They all wanted to stay right away. Not this time soon I said. I could not cope with three of them.
Jay-Jay gave the room a new name - The Chill Out Room.


The shooting pain in my neck has improved a lot, still sensitive on the side of my head. I now have pain inside my ears aswell, a deep down pain. It is a very warm day here. I am in the garden and greenhouse . Not the best day to be in there at all , but it needs doing. I managed to get everything done.

In the afternoon we went for a picnic to a wooded picnic site. It was very nice. So cool in the trees. Summer went as well. She had a great time running around. She has this strange habit of putting her paw in her drinking water to see whats left I think. So with her dusty paws it got very black.


I have got Tommy-Lee today I am picking him up from school as Lindsay has an appointment.
Just as we came out of school Lindsay was coming down the street she had finished earlier than she thought. We all went back to her house, after a few minutes on the park. Another very warm day. I stopped there for a while then went with Tommy-Lee to pick Jay-Jay up from school. He was very pleased to see me. Soon it was time to go home.


At the doctors today. I asked him about allergy tablet for my hot cold changes . He said they would not help me. All tablets are to stop the same. He is quite pleased with me and the way I am coping.


Today I am out with the lady next door and her carer. We are going to Skegness to see a show called "We'll Meet Again!". Wartime songs plus other things. The bus journey was quite painful but I coped. We walked around a bit, had dinner, then on to the show. To start with it was boring then a comedian came on he was very good. After that it picked up a bit. A man played the ukulele and the violin very well. Most of the people there were born when the war was on . I still enjoyed it. The seat was very uncomfortable with no leg room. I was in quite a lot of pain jiffling around to ease the pain. I took a lot of extra (10 total) IBRUES and HYDROCOIDNE but they hardly touched the pain. They just made me feel far away but not far enough from the pain. After the bus journey home I felt very tired. As usual my brain did not agree. I had a bad night with waking some times with pain, sometimes just wide awake.


I feel very tired and ache all over. Took Summer on the common she was running around like a pup possessed . Cleaned up downstairs. By tea time I felt a bit more in control of my body and in less pain.

That brings me to the end of Junes blog. I try not to let the RSD spoil my days but some how it creeps in and stays until I boot it out again - you are not welcome here! If only that worked.

Well bye for now enjoy the summer if you are getting the good weather if not make the best of what you have got.

All the best to you all love Gill.

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