1st February

Today I am cleaning upstairs. My hip is sore and keeps clicking out of place. Everything was going well until I hit my forehead on a cupboard. I did not realize until I went down stairs that my head was bleeding, its a small but deep cut. The RSD took great delight in this and did its usual strop and made more pain just about everywhere. My head is throbbing.

Late evening early morning my head bled again. Sleep is no better, some times I think I would may be better off taking the pills to get me to sleep, no I will rephrase that, to knock me out to sleep because that's how strong they would have to be now. But as most people know, they have bad side effects like not being able to function properly. I think I would sooner stop as I am. I can just about cope. Some day I may be able to sleep more than a few hours. That would be so good.


Pilates went quite well there was a few moves I could not do because of my hip and shoulders. were are so sensitive I hardly dare touch them. Andrew had a bit of an accident he fell getting out of bed and broke a piece of his front tooth off. A trip to the dentist is called for not as easy if he was in UK as he does not have a dentist yet in Amsterdam. More expense. Later on in the day most of my body felt a lot less tight. I know I have said it before but Pilate's does help RSD, mine at least.

The relief was short lived as later on the pain in my right knee, yes you guessed it the RSD one, felt like red hot nails bean driven in to it again. I had to take extra tablets.


Andrew has bean given a quote for about £100 pounds for work on his tooth. I did not think that was too bad, as not long ago I had a filling and that was I think £42 with National Health.
He has bought himself a bike as that's the main way to get about there. There are bikes everywhere. A lot of time more than two people on the same one.


Physio- Wietse put in the usual needles. He asked about the ones he put in my knee last week I said I thought it helped to start with but the pain built up as the week went on. He went on to put some in my knee they hurt just as much as last time. Andrews tooth has now bean repaired at the cost of the £100 he was quoted. In UK it takes ages to get an appointment if you have no dentist and at a huge cost but there less than a month and fixed more or less straight away. At no more than he would have paid here with National health. What does that say for UK?


Steady day I hope. Lindsay is not coming round till teatime as Jay-Jay is at a party.
I did a few things in Andrews room. As he has not taken much of his stuff, just one large, now broken, suitcase full. I have bean putting all his things together to keep till he can have them there with him. As I was getting ready for tea I banged my right elbow on the chair the pain was horrendous and made me feel very sick. I went off on my own for a while so the little ones did not see me upset. For a long time even before RSD a slight knock on that elbow brought me to tears.

When I was sixteen, I know a long time ago, I had a motor bike accident and cracked the funny bone since then it has hurt when knocked. I know most people experience pain when they knock there funny bone but this is off any pain scale. This now after RSD can last all day or at the best just a few hours. The RSD latches on to this pain like jaws. Making me feel very sick and light headed.

A lot later on, early morning on the 6th to be more accurate, I got off Paul's reclining chair and my left big toe went into a massive strop and curled under. The pain was out of this world and most others, I think. I could not move it at all. A good while later I managed to gently push my toe back where it should be it had decided to play up big time. My leg was going into spasms. I massaged it but it would not relax. After taking some ORAMORPH I finally went to bed at 4.45am but it did not help the pain and was awake most of the night. Really that's a laugh as it was morning and light when I went to bed. The birds were singing like there life depended on it.


Up early today as washing machine man is coming to hopefully put right the machine . He was here about half an hour and everything fixed now. I feel very tight in my shoulders the ants as I call them ( the nerves under my skin) are going crazy. I said I would alter the ladies trousers that lives next door. There are proving more of a job that I had anticipated. The material is silky and very fine. I will get them sorted but it will take longer.


Today I feel very tired every where seems to hurt. My legs are very tight so are shoulders. Lots of TIGER BALM. Managed to get trousers right she was very pleased with them.


Pilates today- I have a bad head pain along the forehead and the top when I bend it gets worse.
I don't feel quite right but not sure what it is. I still managed most of the session. After pilates at home I had a violent nose bleed direct from the vein. The blood just poured out bubbling out my nose. I hung over the toilet for about half an hour be for it stopped. Big clots had formed coming out my mouth and nose. I felt very sick, a while later I was. After all this I went for a lay down. I felt exhausted.


As it is my Birthday on Sunday, Paul is taking me to THE MOSCOW STATE CIRCUS tonight on at the theatre, this is a bit different to a normal circus because the acts are mostly unique. The show was very good there were jugglers, a crossbow act, trapeze, dancers,clowns and more. Every one of them very good. I never had seen anything like it before, very different. If you get a chance to go, do.



Today Wietse did not put needles in my knee as he said it hurt enough already. Everywhere else he put them was tight and hurt more than usual. My friends came round later and brought me a card and a pot of daffodils very nice. They loved Summer they had not seen her before and did not want to leave her. They have a little Westie themselves but most people love a little puppy don't they?

Doctors appointment - I told him about what happened with my nose bleeding he is referring me back to the hospital as its the vein that has not healed. I thought it was. If it happens again as bad I am to go to Accident and Emergency. He said I cant go on like this or will be anaemic again and that will mean more IRON tablets which will really mess up my system.For the spasms I have bean getting he is putting me on BACLOFEN I was on it be for but came off it as the spasms were under control. Half a tablet three time a day . I hope this helps.


My younger brother and sister in law came to see me with a card, flowers and a bar of chocolate very nice. I had not seen them for a while so it was really good.
I've started speaking to Andrew most nights on Skype we have a web cam so I can see him and he can see me its like he is up stairs. I do miss him as most night we would talk now I have no one to talk to.


My Birthday I got lots of cards a few present of flowers and chocolates and a few promises of presents later and I already had my Theatre Trip.

We decided, well I did to go to the seaside it was a cold wet day but so what. Summer came as well this is the first time she has bean in the car for a long journey. She was fine she had a bit of fish for her dinner. Since we got her she has not gone to the toilet when taken out for a walk, preferring to wee on her lawn, but today she did. I was a bit a worried that she would go all day without going.

We went on the beach right down to the sea she was not bothered by it, in fact when a big wave came she sat down and the wave went right over her, she was very wet. She loved just running around just picking things up like shells and bits she found on the beach.

Cold on the beach.

Let me go I've seen a seagull.

The journey was back was painful as we walked quite a way. An enjoyable day but very tired.


Pilates - Did most of the moves today but had another nose bleed near the end nothing but like the last one. This was bright red blood the other was nearly black that's how I knew it was vein blood as its very dark. Andrew did not get a job he had applied for and was disappointed but he will have to keep looking.


A friend came round to bring me a late Birthday present but came without it as she forgot to pick it up but it was still nice to see her and her son. Lindsay and the boys came round later with more presents, chocolates and flowers and cards. Even her friend and children brought me a card and Thornton's chocolates. I did feel special.
Today I am in quite a lot of pain, when I move in certain position's. More extra tablets. I also feel far away it could be the BACLOFEN or something else, lack of sleep or many other things. Who knows RSD is not for reasoning with, or understanding.


Lindsay and the boys are here, I really feel not well so have bean letting her do most things. I have a sharp pain under my ribs and my stomach is swollen. This does not feel like IBS. My whole body seems to hurt. Rest day today, maybe that will help.


I have bean awake a lot of my short night with pain in my stomach still. I came down stairs and rushed to the toilet in absolute agony. I felt like I needed to go but could not how ever hard I tyred. the pain was real bad. In the end I went and could not stop it just kept coming. The relief was most welcomed even thought it took a while. I think I had a blockage as I have bean going to the toilet most days but maybe not enough. I will make an appointment to morrow with the doctors.

Doctors- He thinks the pain and what happened yesterday could be either a blockage or very constipated it can happen when you are on strong medication. The treatment is to have more LACTULOSE 10ml twice a day I had bean taking this but only when I thought I needed it obviously I needed it more. Hopefully this will help. My bleeding nose problem is to be sorted out at the hospital he thinks they will do a full cauterisation. This has bean done two or may be three times before. This should sort the problem out this time. I told him that the BACLOFEN is working he was pleased. Not as many spasms but more shaking and muscles twitching. I can't have everything right can I?


Slept for about three hours straight last night this is a rare thing.
I have got Jay-Jay and Tommy-Lee for the day. We are having a picnic in side. This is my Birthday Party tea, as they said I had to have one. This went very well even Summer joined in may be a little too well. Jay-Jay and Tommy-Lee had to keep pushing her away as she was getting the food.

Summer having her tea party food.
Tommy-Lee looking thoughtful.
The food.
Jay-Jay gives it his approval.

I stepped awkward on the stairs and twisted my knee. The RSD did not like this it went mental pain and spasms plus sensitivity most places. Just a little thing like that can cause should a lot of pain. I had enough as it was. I just took extra tablets they did not really help much neither did the TIGER BALM I put on. One thing my stomach feels a lot better. than it did.

Pilates - I could not do many of the moves as my knee was too painful. More tablets. Even a newspaper on my knee felt like a ton weight. The knee is very swollen about twice the size it should be. I hope Wietse can sort it out on Friday.

Everything hurts, it hurts bad.

Physio- I brought Wietse up to date about the last few days. He put needles in my shoulders and neck plus my head. He did not touch my knee as anything near it would make it worse. I said it can't be much worse. The needles hurt and kept making my body twitch. When I put my hand on my shoulder I could feel the nerves jumping under my skin. After the needles came out which were very tight and hurt, most of them bled. Before I went to bed I took a good dose of MORPHINE ( ORAMORPH) this made me very itchy and hot, so hardly any sleep.


Today we, Paul and I are going to Halifax to see Wayne and Will my son and partner and stay over for the night. The journey was very uncomfortable and painful. 8-9 on the pain scale. I took ORAMORPH before we left but it did very little for the pain. We had a good weekend not really doing much but just catching up . We took Wills late Birthday present a very large Eeyore he is Eeyore mad, plus a zip top. He really loved them. We also saw Timmy, their cat.

Will with Eeyore.


Timmy with a mouse.


After a night sleep, well my night, I felt a bit better the pain was down to 6-7. After dinner we made the journey back. It was not as painful as the one here. It was nice to see them both again so worth the pain. My daughter and the two boys plus there dog, have bean looking after the house and Summer while we have bean away. The boys complained that there was no decent ice cream. There was only two types of Cartedo'r, they wanted Cornish as they can put sprinkles and sauce on it. Apart from that everything else was alright Lindsay cooked a lovely dinner. That night I was so tired but sleep did not happen.

Well another month gone by, a very mixed one with a lot of extra tablets added stress from Amsterdam but its not all bad. Just pick up and carry on the best I can.

Well look after yourselves love Gill.

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