2nd March
Pilates I did alright today. A lot of weeks I find it very hard to keep focused and some of the exercises are impossible to do. After the class quite a few of us went for a meal to celebrate Jo's birthday, well it was a joint celebration for Adele and for me as well, we all had Birthdays in February. the meal was very nice. I made a cake for Jo and we all had some. Those that were too full took it home. It was very nice even if I do say so myself and they all agreed thankfully.
My knee seems to have improved a lot not as painful and less swollen. A good day all round.
3rd
What did I say about my knee - it really hurts today. I have bean on it a lot though sorting out DVDs and CDs for the charity shop. My shoulders are very sensitive and the tingling is bad. This is starting out to be a painful month.
5th
Made another cake, this one for Jay-jay my grandson who is 7 0n Sunday this is a Ben 10 one.
I had no Physio yesterday as Wietse is away I feel like I really need it as well. Lindsay and the boys came round Jay-jay is excited about his Birthday as he is having a party at the local Play Zone center - a soft play area for young and not so young. I would love to go but I would not be able to cope with the volume of noise. I feel that this stupid RSD has robbed me of so much even more now as the boys are getting older.
The day has not bean a good one I think I am getting a cold or worse as all my joints hurt and I have a bad head just where the temples are. My stomach is very swollen, the tablets I am on or most of them make me constipated big time. I feel far away I have not had many extra tablets so it must be something I am getting. Bed 4.30 but even then I did not settle.
6th
In the morning went to see Jay-Jay to give him his presents. Paul and I got him an Etch a Sketch just like the one I had when I was about 10. A game for his leap pad book and some Dr Who PJ's. He liked them all. Also I got a tin of Quality Street for him and Tommy-Lee as they love them so much. Their Mum is looking after them as Tommy would soon eat them all. Jay-Jay got some very nice presents. A car race set a helicopter, Lego and many more he was a lucky boy.
In his new suit.
Jay-Jay in his new PJS.
On his walkie talkie.
Tommy-Lee in a thoughtful mood.A trip to Pets at Home was called for as Summer was nearly out of food. After this I went for a run. Everywhere hurt but I ignored it and did the best I could. If I can get to run it helps my mental side even if it does hurt I feel better after it, well most of the time.
I always have this RSD saying at the back of my head USE IT OR LOOSE IT. When I first got RSD it took hold very fast. The pain was like nothing I had ever experienced. I found it very hard just to get about even on crutches. I was very worried, as I had always bean very active wondering what the future would be.
About two years later I went on to the many RSD chatrooms and spoke with a girl you had just got RSD from a minor fall just like me, and was terrified what would happen, just like me. The pain made her unable or unwilling to move and she spent most of her days either in bed or in a wheel chair. I told her she must fight it or it will get worse. She said it was too strong. She is now in a wheel chair unable to walk at all. This will always remain with me. I have not spoken to her for a long while as she is no longer on the RSD chatrooms. I think this has made me a stronger person. I hardly go on them at all now
7th
My friend was meant to come today but did not turn up. I was very disappointed to say the least. I can go a lot of days and not see any one so its nice when some one says they are coming for a visit. I took Summer on the local common (park) she was a bit nervous to start with but soon gained confidence. She enjoyed it very much.
My appointment came through for the ENT clinic but its not till May the 9th. My doctor said if it bleeds like it did before I am to go straight to A&E. I have not had too many bad bleeds. probably by the time I see the ENT doctors my nose will have healed its self.
8th/9th
My body feels like it is turning against itself with lots of pain mostly everywhere. My stomach is swollen and sore. I'm very constipated the LACTALOSE does not seem to be helping at all.
My temperature is all over the place, hot, cold, all the time worse than usual if that's possible, maybe I am getting a bug or something.
Pilates did not go well I found it extremely hard to concentrate on the moves like my body had bean taken over. I did what I could. As I laid there and looked around I noticed how easy most of the other ladies did the moves it was quite sad for me.
Hopefully on Friday Wietse will have some answers.
I am doing some work on a seating unit that was Andrews. My thumb is sore from all the hand sewing. I am recovering it as it is very faded from use. Its the type that makes into a bed so it's very handy for guests.
11th
Bad news - Wietse has cancelled todays Physio appointment as he is ill. The worst bit he is on holiday till the 1st of April. That will be five weeks in total with out physio! I feel bad now what will I be like in another three weeks!?
The pain today is bad. My stomach despite taking extra, extra laxatives is no better. I think I will have to come off the MORPHINE to help this. Doctors appointment in afternoon. Talked about what had being on, he said the Morphine drop would be too much all at once so we decided to half it to 10mg twice a day. He has all changed the tablet to OXYCODONE+NALOXONE MR 10mg/5mg. He thinks this should help a lot with the constipation and stomach pain. Where have I heard that before but what have I got to loose. Went to toilet before bed...is it working?
12th
Went to toilet straight away only just getting there. Still in a lot of body pain and sensitivity. A hot bath helps with the joint pain but I can only be in a short time as my leg and foot start to hurt.
Lindsay's and the boys are here today. Spent time playing with them, very tired. Still going to toilet. I think this actually works.
13th
Today my youngest brother and wife are coming for tea. I am cooking a roast beef dinner with all the usual things to go with it and Christmas pudding. The meal went very well with every body enjoying it.
My stomach is still behaving and going down in size. Wish the same could be said for the rest of my body still in a lot of pain everywhere.
14th
I have now got a very sore throat and a splitting head ache. I think this has bean coming on for the last week. I had planned to go into town but decided not to. I instead did some knitting I can only do this when my wrists are good as they hurt too much otherwise. I am knitting teddies for Jay-Jay and Tommy-Lee.
My legs feel like sand is running through them when I stand up - a very strange feeling indeed. My stomach feels like some ones else's, well behaved not swollen or sore...am I dreaming?
15th
Today my friend Russ came to see me I used to see him all the time but now he works and lives further away so it was a lovely treat. We talked and caught up on his and my life mine not being much different from the last time I saw him. He on the other hand has got a new job moved and is starting to have a good life. I am pleased for him as he deserves it.
I now have a cold a bad one as well. Had a lay down in the afternoon, felt a bit better.
16th
A very rough night severe spasms in my legs, had to get out of bed a few times to get rid of them by standing and pushing down hard on the floor. This works for a while then they come back. They are very painful after the spasms have gone then I am left with the tightness in my muscles. This can last a few days more if the spasms continue.
Pilates went well a lot better than last week.
Not too bad a day for my body pain but my cold is not too good, at times I feel dizzy and light
headed. Had a lay down in the afternoon. I even had a few minutes sleep.
18th
Today Little Tommy-Lee goes into Hospital to have the pins taken out his once broken arm.
The surgeon is worried as to how this will go as they have become bent. Tommy is a little terror sometimes running around, and jumping off things. That's how he broke his arm in the first place.
The operation went fairly well the pins are out with a struggle they had to remove cartilage and some bone to get them out. After the operation my daughter said he was in a lot of pain more than when he first broke it. Poor Tommy-Lee. He came home later in the day. He has a lot of bandages on his arm and is back in a sling. Hopefully I will see him tomorrow if he wants too.
19th
Lindsay and the boys came round. Tommy-Lee was quiet after his big day yesterday. I told him he was very brave, he said I know Nanny.
Jay-Jay looking after Tommy-Lee
The present he got in Hospital.Lindsay's dog Chop Suey sometimes comes round with them. She gets on well with Summer
They spent most of the morning running in and out chasing each other.In the afternoon
Chop Suey
Summer went for her first trim and bath she was looking a bit rough.
Summer before her trim.The job takes over three hours. When Paul and I pick her up she looked very sweet just like a little lamb and so soft and white. Suey went mad nursling her and playing with her. She looks very smart.
Very tired after her big day.
She looks like a little lamb so sweet.My cold has gone on to my chest and hurts there when I cough, hopefully it will be gone soon. Today I ache just as much as the past few days. My stomach is still good. This new medicine really works. This is a link explaining how it works - http://www.netdoctor.co.uk/medicines/100005204.html
20th
Today I am having an easy day - no cooking or much else. My body is wrecked with the cold and RSD pain so its my day off. This pain started off bad in the beginning of the month and has not got any better. I think it has a lot to do with having no physio.
My stomach is really doing good no IBS pain, very flat and regular toilet visits. At last a medication that does what it says. I have also lost weight, about 3lb. I have not taken any laxatives at all since Friday 11th. I feel a lot better all round. As soon as my cold goes I will feel better still I hope.
21st
Fairish night with pain, very sore throat. I am having a bad day with joint pain when I sit it gets worse. I am so tired I just want to relax a bit but the pain is stopping me. may be my cold has made the RSD worse. When I was talking to Andrew on Skype he said I looked very stiff and in pain. He was right.
22nd
Even though I don't really feel like it. I needed to pick up my tablets from the chemist as they did not have them all last time. As I am so near the town I carry on to pick up a few things I need. My voice keeps going and when I have a voice its very raspy. I am coughing up stuff off my chest and blood from my nose runs down the back of my throat making it very sore. I don't feel to good today at all. Things can only get better.
23rd
After a short night, I actually feel a little better. My voice is still bad but throat not as sore. I am going to Pilates as I think it will do me good and I have a new mat. The mat was good no slipping or moving as its a lot longer all of me fits on it so no more cold spots as my legs. As I used to be off the edge of the other mat so I was pleased with it. The session went well managed most of the exercises but coughed a lot and felt dizzy a few times but on the whole a lot better than I thought it would go so I was pleased I went. I was very tired the rest of the day so did not do too much.
25th
I have bean making two teddies for Jay-Jay and Tommy-Lee - Mr Bean knitted ones. They were started a few weeks ago but my wrists have bean sore so I have not bean able to do much at a time. At last they are finished, the second one at 2am. They are here tomorrow so will get them then. A better day with pain, my chest and throat seem to be improving as well. I think I have a throat and chest infection. I should really go to see the doctor, but I did not want ANTIBIOTCITS as once on them I need them more, if I can get rid of it myself it stops away longer and I build up my immune system a bit more. I do suffer more though.
26th
Jay-Jay and Tommy-Lee loved there Mr Beans teds. Tommy did not have his sling on as his arm he feels a lot better and is in a lot less pain. They had a good day playing with toys and on the computer.
28th
Early hours, a lot of pain in my joints and nerve pain now I have earache as well despite taking extra tablets the pain did not go. Is there no end to this PAIN!? Went to bed at 4.30 still in pain. Kept waking up.
Got up, pain still there I will try to work it off and try to ignore it as much as possible.
Later on violent temperature changes. Pain now has settled in my right knee and left hip else where not as bad.
29th
Today I have got Tommy-Lee for the morning. We played with play dough and when his mum came back as it was another warm day we sat outside. It was so warm it was more like summer.
The pain now has settled a bit and I'm more able to cope with it. My right ear hurts now as well but not as bad as the other one did.
30th
Not a good night. Terrible burning all down the right side and both legs. Hardly any sleep, body temperature all over the place. Some times I think this is the worst part of RSD as they does not seem to be any control over it. The nights are worse than the days.
Had a good session at pilates, everything went well. I coughed a lot though. This chest and throat infection has really got hold of me but I think I am over the worst. I am looking forward to seeing Wietse on Friday I hope he has some answers for me.
This last month has not bean good for pain and body temperature, I have a bad enough time without anything else, but the chest and throat problems made every thing a lot worse as my body reacts badly to extra things.
Hopefully next month will be better and I hope you are having better times.
Love Gill
