End of April

The last few days have bean very tiring I have had a lot more pain than usual, but the trip to Amsterdam was worth it. I am still suffering with with bloating and swollen ankles. I looked up water retention and RSD on the Internet, it seems RSD is well know for it. I have bean drinking Dandelion and Parsley tea as I read it helps with water retention. I am trying to get in at the Doctors but no luck. The phone lines are messed up, only the first person phoning can get through.

I showed Wietse the pictures I took while in Amsterdam, he said they were good. He filled me in about a few of the things in the pictures I took. The big liner type boat we saw is like a floating hotel used for party's and big functions (The Botel).

May 1st

Today Paul, Summer and I are going to Mablethorpe. Summer was ill on the way I think it was nerves as she did not know where she was going. When we got there it was very windy and cold, especially on the sea front the sand cut my face and legs. We looked around a bit then had some dinner. Fish and Chips of course, Summer had a little bit as well. She made lots of new friends as everybody loves her. She was very happy. I know we both went home tired. Even though I was exhausted I could not rest, a lot of pain in my legs and the dreaded burning in my feet.


I went for a run, well sort of a run.... It went well no stops. It was a cool night. Somebody asked me how I can run as the last time they saw me I was having a bad day and could hardly walk I was on my scooter. I try to explain that RSD varies from day to day, no more like hour to hour. I run if I can, when I can, for no longer than half an hour. The run does me a lot of good mentally and most of the time physically. The run is not without pain though. I try to ignore it most of the time. I am trying to train my body to fight back and get rid of the pain without daily pills.


At last I able to get to see my Doctor. I spoke to him about the water retention I had. He said I probably did have it but not now. Maybe the tea worked. I am reducing my MORPHINE tablet down again only 10 mg a day the lowest I have bean on, (I went through a lot of withdrawal last time I reduced but was able to cope, just) with the view to getting off it all together. I will still have ORAMORPH plus the other pain relief I still take but I feel now is the right time. I am fed up with all the side effects.


Physio again- I spoke to Wietse about reducing the tablets as I had done in the past. I asked him if any one had ever managed to control RSD with no pain relief or alternative medicine (Cannabis). He said he knew of one but she had already become a recluse in her home and barley left her bed. He said I was a lot stronger person and would do well if I took baby steps and did not rush it. I know a lot of tablets I will be on for life like the OSTEOPOROSIS ones. But a few less would be good.


My nights have bean shorter than ever some nights going to bed at 5 am, I am awake between 6- 7am if not earlier. I wake during the night as well, sometimes like I am scared by some thing. Or sometimes its the burning pain in my feet. Or just my body temperature going crazy again I am having a lot of problems with it.

I am at the Ear Nose and Throat specialist today. He had a look at my nose which has bean bleeding every day since I was in hospital last time over a year ago. He put in a small camera into my nose after numbing it first with LIDOCAINE . This ran down the back of my throat and made me cough, at one point I was unable to speak. He said it looked very red and sore right to the back. The part where it has bean bleeding the most, started again so he saw straight away where the problem was. He cauterised it and looked in the other side saying how narrow it was, from the swelling and bleeding from the other side. I told him when I was younger I had an operation on my nose as it got damaged in a motor bike accident.


A bit better night than most I have. I feel a bit light headed and sick feeling but no head ache to day. Did a bit in the greenhouse. Also moved some big Lillys into tubs. I hope Summer leaves them alone, she seems to like to destroy yellow flowers.

I went for a run later night time. My shoulders hurt to start with so did my knees but I did the usual thing, ignored them. The pain went down to a more sane level. The run went well, one stop it was a bit warmer that last time.


I am looking after Tommy-Lee today. We went on the common with the football but it was very windy and kept blowing away. Summer went with us and I let her off the lead. She was very good and came back when told. After the common Tommy played on the park then it was home to an indoor picnic and a few games on the Wii. He then fell asleep watching Doctor Who. He was still asleep when Lindsay came to pick him up.

Later on did some work on the blog. Unbeknownst to me Blogger went wrong and I lost about three hours work (from the Amsterdam Blog)


Very rough night a lot of Pain and burning. During the day the pain is copable but night its really bad.

Physio- Talked about pain to Wietse. He thinks a lot could be withdrawal and RSD being RSD.
He was talking about his childhood, when I felt very strange and hot saw more than one of him and he seemed to get further away, sort of passed out. I soon recovered after laying back for awhile. Very strange. I usually pass out when I am getting a virus or some thing like that.


Not a good weekend a lot of pain in my joints worse when I try to rest I think this RSD has got it in for me. Big blood tests today liver function kidney test and full blood count. I am still getting a lot of pain in my arms and shoulders the pain lessens if I hold them up. Wietse says this is because the blood flow is reduced.


Cleaning upstairs every thing was going well until I fell and knocked my bad leg on the bed. I screamed any body that heard me would think I was being killed. I laid on the bed. My leg swelled up straight away. The already sensitive leg went mental, then so did the rest of my body. I laid there till the pain subsided a little. Even a lot later it still hurt and burnt a lot.


I have got Tommy-Lees company today. We are going to the park behind where he lives and having a picnic. The park has recently bean done up so its very good. Tommy had me trying every thing out and looking after me, if I went too far on the climbing frame or too high on the swing by shouting - Nanny be careful. We had a sort of game of football but as we had no ball we used a old empty beer can (not one of mine). We played that on the waste ground behind the park as I did not think it was a good idea to play in the park with a beer can for a ball.

I live near the river and these two swans come back every year to nest. There are seven babies.


Physio- Talked to Wietse about temperature changes and up and down pain. I told him I stood in front of the fridge and instantly turned very cold then sweating. he said that's typical RSD. He said what I am experiencing is not uncommon for RSD. I just seem to go from one extreme to another. I do not go in the freezer to get things out if I can avoid it as it causes pain I know some is from my RAYNARD'S but its getting worse. I showed Wietse my leg where I knocked it on the bed, its still very swollen and the bruise has not come out yet. He said keep a eye on it and if it gets worse see a doctor. He will check it next week.

Since I had my nose done (May 9th) it has not bled as much but still not stopped all together. I am back in few weeks time. If they send me an appointment. Last time they forgot.


Summer had her first bath at home (first time was at the dog cutters) she looked so little when wet as most of her is fur. Lindsay helped me I think Summer quite enjoyed it. She looks so white ,but not for long. Her nick name at the moment is Scruff Pup as she get so mucky. She is a digger and many holes have apeared on the lawn. When I have my bath she trys to get in, or licks the water and bubbles by standing on tip toes. She looks very funny.


Today I am starting to sort out, and take off the paper in Andrews room ready for decorating. I am doing a bit then stopping for a rest. I have decided to stop my afternoon tablets to see if I can cope with out them, GABERPENTINE and BECOLFEN.

I went for a run later on and saw a lady I used to run with. She said it was nice to see me running and asked how was it possible. I said I have worked through the pain barrier and come out the other side ( well at least for now). I am trying to get my body to help its self as much as I can. She asked if I was pain free, I said far from it. I believe the more tablets I take the more my body demands. I just take enough to get through the day. The pain is at its worse when I am not doing any thing.


Not too bad a day, even took Summer on the common I even let her off the lead again she loved running and jumping in the long grass. Later on we saw the family of swans. They have grown a lot.


Physio- All went well no bleeding from the needle's today but I was cold so may be my temperature has some thing to do with it. I got a little book all about ACUPUNCTURE from the dentist of all places. I showed Wietse it he looked at it and said he had bean doing it all wrong. Joking of course he said it was a good little book and explained a lot. ACUPUNCTURE helps because it helps to restore the balance. There are a few variations of it, Wietse uses the Chinese traditional method.

The classical Chinese explanation is that channels of energy run in regular patterns through the body and over its surface. These energy channels, called meridians, are like rivers flowing through the body to irrigate and nourish the tissues. An obstruction in the movement of these energy rivers is like a dam that backs up in others.

The meridians can be influenced by needling the acupuncture points; the acupuncture needles unblock the obstructions at the dams, and reestablish the regular flow through the meridians. Acupuncture treatments can therefore help the body's internal organs to correct imbalances in their digestion, absorption, and energy production activities, and in the circulation of their energy through the meridians.

The modern scientific explanation is that needling the acupuncture points stimulates the nervous system to release chemicals in the muscles, spinal cord, and brain. These chemicals will either change the experience of pain, or they will trigger the release of other chemicals and hormones which influence the body's own internal regulating system.

The improved energy and biochemical balance produced by acupuncture results in stimulating the body's natural healing abilities, and in promoting physical and emotional well-being.

This is why I think it is good for RSD but it is not a quick fix, more an on going treatment. I have bean treated for about six years even though the RSD has spread I am convinced it has helped to stabilise it. When Wietse is away I suffer more with pain.


Doctors results of blood tests are border line but he says they are not too bad for me, so no extra treatment necessary. All tablets are to stop the same. He said I could have AMITRIPTYLINE to help me sleep if I wanted I said no way, it might help sleep yes, if you don't mind being a zombie the next day. Some people are not affect this way and it works very well for them not me.

As I was going to the Doctors I dropped my phone (my hands drop things a lot of the time) it went straight in to the river. Even though I tried many things to get it back, magnet on a string very long fishing net, it was not possible. I could even see it, but the sides of the river are steep and there is a big drop down.

Well thats Mays Blog - I hoped you liked the pictures.

Bye till next time Love Gill

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