Even when I was ill with bronchitis and a throat infection I did not suffer as much as I have in the past. I know there is not a cure for RSD, but this is helping me. Just as it did with Wietse.
All the family.
After all the Christmas and New year activities I feel quite drained. Pain levels are up, so a bit of extra MORPHINE was needed. Also a bad head ache that does not want to go. When I bend down it feels like my head is going to drop off.
Paul and I have bean to an auction, I used to go to a lot of these when I was younger with my parents. I enjoyed it a lot, guessing what things would make, most of the time way out. We did not buy any thing as this was an antique one. We hope to go to a more general one soon.
In town today but hips are bad very painful in fact most of my joints hurt. I think this is the damp cold weather we are having. I have got thermals on and thick socks.
At the moment we have a lodger (Tracy), so at nights we have bean doing 3D puzzles, these are built up in layers so different to a flat one, more of a challenge We both enjoyed doing them.
Late night early morning, my feet were so cold they were blue and red I could not get them warm, also a weird thing tooth ache at the same time. This has happened before I think its the RSD nerves playing up. I have had my teeth checked and they are alright. The pain seems to come when I have bad RSD pain. Have I had not got enough pain all ready without the teeth having to get in on the act too.
The common where we go for our walks is like a muddy, wet, car racing track. Summer just goes in all the puddles and mud she can find. She had to have another bath. We are going to keep off the common for a while till things improve. We are lucky as there are plenty of places to go for walks near by. Hopefully Summer will keep cleaner.
Took the Christmas decorations and tree down down today, it looks so bare now. In the afternoon I did the gardening there was a lot of dead bits to cut off and pull up. Looks nice now. All the spring bulbs are coming up as well. Still cold feet and the dreaded headache.
Spasms in the night legs and feet. My toes on my left foot hurt a lot and are very stiff and tight. My balance that was good, has now deteriorated a little. My temperature changes have bean all over the place, cold then hot and then both together. This could be from no physio since last year. First session is on the 10th. Very cold here as well I think it will snow soon. I like snow and so does Summer the RSD does not but there is not much it does like is there?
First pilates session of the year. Even though in a bit of pain and still that damn headache. I did quite good some of the new moves I could not do. One where it would have caused a lot of pain and spasms. Jo gave me an alternative one to do which seems just as affective. It was a good session and the first one of many I hope.
Physio - Three of the team and Martin this week - the team has split up as they are in great demand. The usual pulse and tongue observations taken. They have asked me to keep a food diary to see if certain food may be affecting me. I don't think so but I am willing to give it a go.
They asked how I thought the treatment was going I said well. I told them about my balance being better then not as good when the physio stopped over Christmas they were pleased with that result. As I said be for they will not cure RSD but anything that will make my life a little better I will take with open arms. Ear pins in left ear they hurt a lot. The pain is like having your ears pierced with the same burning sensation. Martin then said some thing new for you today. He went on to say to the team put a towel under neath in case some thing drops off!!! What? all the time with Wietse I said, nothing ever dropped off.
He explained this was called MOXA STICK to help with my cold feet and circulation. This looked like a fat cigar that was lit and got hot. (The towel was to catch any ash that fell off. Not any of my bits. This was held close to lower leg and moved slowly around in small circles. I could feel the warmth. Martin asked if any thing was happening to my fingers. I looked and they were very red, plump and warm. Very strange. On the way to physio I had a bad raynards attack so my fingers had only just recovered. Later on both feet felt warm.
Very tired today I ache a lot still this head ache is hanging on. This does not go away for long even with pain killers. Pity there is no RSD killers. I think a lot of this is from the after affect of the infection and bronchitis. Most people with RSD take longer to recover from even the slightest illness.
A nice sunny day for a change but cold, snow getting closer I think. Lindsay and the boys here. I looked after them while she went shopping taking Jamie-Lee with her. Jamie was a bit grumpy, but she did had a three injections on Wednesday.
I managed to bash my elbow on a cupboard also I hit my my knee on my strider. More pain added to the rest. Headache is not as bad today or it was not, till the boys got here. No there are not too bad but can get very noisy at times. A fair day in all. When I went out side about 3am it was snowing not a lot but a few flakes.
A fair nights sleep I slept from about 4am to 8.30am. No spasms and not too much pain. Just a fine covering of snow in places. When I went out with Summer it was sunny then thick fog. Where can you get so many different types of weather in shush a short time but Britain and may be Holland (where my youngest son lives). A steady day so not doing too much. Head ache still hanging on. Not as bad so hopefully its going.
My left leg has bean hurting when I looked there was a lump just a few inches below my knee. I think this might be some thing to do with my veins. If it still there in a few days I will get it checked out at the Doctors.
Early morning about 2am I went out side and there was about an inch of snow all white and bright lovely. Summer was playing in it, rolling around and jumping and she did not want to come in.
Woke to severe spasms in left leg, same spot as lump. I still have some cream from when I had vein trouble be for so I am using that. My leg is hot and swollen it hurts when I put weight on it. I am trying to avoid a trip to the Doctors as I spend too much time there it is. I never know how much pain I am really in because of the pain medication I am on covering it up. So is it serious or not?. Pain from your body is there as warning that some thing is wrong.
Hair cut and coloured tonight I hope, so long as the snow is not too deep. Helen arrived with Chris to do my hair. Chinese for tea - it was very good. My hair looks good as well.
My friend Bev is here today. We exchanged Christmas presents (we did not see each other at Christmas as we were both ill). I got a mug, a lavender wheat bag and a pot of jam - which was very nice. I made her a hat and scarf mitts set. I did not have them finished at Christmas so the few extra days were good I finished them for when she came here. She was very pleased as well. A nice day catching up. I walked down to the train station with her with Summer so an extra walk. Very cold too. I was so tired when we got home right shoulder burning. My shoulder still burns and is painful after walking. More so than my legs.
Pilates - This went very well no problems with the moves at all. Some I don't do quite the same but I do it my way. Jo is quite happy with that. The hall was cold but I was alright as I was near the heater again. I think that is my spot now, as everyone else gets too hot there. I think its nice- cosy.
Went on to see Lindsay, my Daughter and Jamie-Lee. She has grown a lot and weighs about 13lb I think now. She is 18 weeks old still small but quite noisy when she wants to be. She is talking in her own way as well and shakes her head as if to say no. Very sweet. She was a bit chesty though.
Physio - Usual talk and pulse and tongue checking. Gave them my food diary for them to discuss. Today treatment was ear pins in right ear. Plus two needles, one in each ankle. I was a little concerned about the RSD ankle as I know it can go into a strop and cause a lot of pain and spasms. I agreed saying if any problems the needle could come out straight away.
My foot stayed in spasm most of the time but was not too painful. I was pleased. The team were saying how much better I look since I first started going there. I said yes its because ACUPUNCTURE suits RSD and me. Also my B12 has taken affect. This I had on the 8th of this month. These are two months apart now. Depending on the next blood test they might be a month apart.
I will be all ways grateful for being recommend by Bev for this physio treatment.
A lot more snow has fallen. Summer is still rolling in it at least she keeps cleaner. I have taken a few pictures from mine and Summers walk, and in the garden.
Wheres all this white stuff come from?
Where's my legs gone?
Summer looks more like a white lion than a dog.
Summers boyfriend Bertie, in the red coat.
Yet more snow about three plus inches. Still quite a lot of pain, balance off a bit as well. I did wonder if the ear pins had slipped or just a few off days. With RSD I can never be sure. Temperature changes are bad. I have taken quite a few extra IBRUES over the last few days. Also a bit of OROMORPTH.
Had a bad neck spasm while in bed I just lifted my head and the pain shot down my arm and back .. I could not move at all. A bit scary . Martin has explained about this be for but I am going to ask him on Thursday again.
Pilates went well even managed to do a few moves that I can't usually do. My joints all hurt not too sure this is RSD or FIBOMYALGER or just mixed. Gave in and took MORPHINE the other tablets hardly touched the pain.
Jamie-Lee at Christmas.
Poor little Jamie-Lee is ill she has got bronchiolitis - inflamed linings of the lung and the openings and if no improvement she will need to stay in hospital. She is quite poorly. Still smiling though. The afternoon was spent hemming and altering table cloths for a friend.
Physio-Still in a lot of pain so took some more MORPHINE before the session.
The team and Martin did the usual pulse taking and tongue looking. A few questions as well. The team said over all my diet is fairly good. Probably a little too much eaten late night. I don't need energy then, so could keep me awake.
Pins put in left ear apart from one spot that I asked for one not to be put in as still sore from last time.That's the only negative thing about the ear pins they can make my ears very sore and painful. A good massage of back and shoulders so nice and calming.
I asked Martin about my neck. This is what he said, the vertebrae are not in line so when I lift or move my neck the one out of enlightenment stays still until the last moment then sort of jumps trapping or pinching the nerve hence the pain and numbness and paralysing on some occasions
Message from my daughter, Jamie-Lee has gone into the hospital. I was there at night when the Doctor came round and he said there is a lot of bronchiolitis around in babies and young children. He thinks she is over the worst as it has peaked and on the way back down she does not need any special care or oxygen and would be safer at home away from the nasty bugs that hospitals have.. She was monitored while there. The bronchiolitis will last about two weeks or more. Also as she is getting better on her own this will build up her immunity.
I don't feel that good my self a lot of pain still in joints. I gave in and took some more extra MORPHINE. I have bought a scarf with heat pads so it keeps the neck warm and pockets for the hands.Trouble is the weather as turned warmer. This is UK so it will be cold soon so I can properly try it out.
Not a good night I could not get pain free every position hurt. I have got the feeling of the base ball bat hitting each joint in turn. My knees are quite swollen and red . Very painful. Awake a lot of my short night.
Over night we have had a lot of rain and just about all the snow has gone.A bit of shock to someone you saw the snow at yesterdays tea time and did not go out again till this morning.
The common is very wet again at least with the snow Summer kept cleaner. She did pick up all the snow on her belly and paws. Most days she had to have a shallow bath or the hair dryer used on her to get the snow to melt. She loves the hair dryer and goes all daft and playful.
Jamie-Lee is improving a little but like I said this will take time.
Still a lot of pain in joints but I am keeping moving. Cleaning up, I dropped a tin of polish on my RSD foot. The pain was unexplainable. I just about passed out, trying to control breathing while laid on the floor. Not a good thing to do.
When I looked later my foot just had a small mark on it where the tin hit it. Quite a few tablets taken plus a bit of extra MORPHINE JUST. On a good note my lump in my left leg has just about gone.
A very windy sunny day I all most got blown away on the common. A bit shorter walk as my physio session is at 10am instead of 1.30pm. Very windy going there.
Usual pulse etc. Ear pins in right ear. Told them about my joint pain that has got no better. Also had a nose bled most days this week some bad ones. I thought this had come to an end but I was wrong. Two needles one in each foot. My right foot (RSD one) always spasms up when touched. Today it did just that. My right leg is very shiny, RSD symptom.When touched my foot is still sore from the polish tin drop.
Next came the best bit, a back and shoulder massage by one of the team very soothing but painful as well. She pressed around my spine and found a lot of tender places.
I walked back home took Summer for an extra walk she was excited as most days we have just one walk now since it gets darker earlier. Not back long and Lindsay and the boys arrived. Noise explosion.
As you can see not the best start to the new year but probably not the worst either. Things can only get better. I do hope so.
All the best to you all. Love Gill.
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