Pilates - This did not go too well my whole body felt like it belonged to someone else as I did not have control of it. I wish it did belong to some else then they could have the pain instead of me.
Very down at the moment I really would like a run but can't, so I decided to go for a different walk with Summer to the local park. Even walking I am struggling with, but I thought what the hell. PAIN if I do things PAIN if I don't. A very cold day frost and ice everywhere. We walked round the park.
Summer then decided to chase some geese that live on the lake. She chases just about everything that moves. They took off, flying across the lake so did Summer she jumped straight into to it going under. The shock could have killed her as there was ice around it. This is quite deep. After what seems like a long time she shot up and paddled to the side. She shook herself then came running to me. She did not seem any worse for her dipping. This is the first time she has bean in deep water, before now just big puddles. I kept her moving so she did not get cold . Every so often she rolled and rubbed her self on the grass.
A bit further on we met a standard poodle (The big ones about the size of a large Labrador). She wanted to play with it I told her it was time to go. She hid between the dogs front legs so I could not get her. The dog even put his paws round her to hide her. He did not want her to go either. Finally I got her on the lead. The rest of the walk went with no more adventures. By the time we got home she was about dry. A lot of pain but felt a bit better in my self.
3rd
No physio today. A lot of building work is being done and physio is moving to a different part. I could have done with some massage. I'm feeling very tight everywhere.
I decided to go in to town and make an appointment to see the Doctor about my blood test.
I had to go back so stopped in town to save going home again. Doctor said its not POLYMYALGIA as my levels they tested for were good (11) if I had POLYMYALGIA they would be about 30. I did not think I had it. They was just that little bit of doubt, as I did not think I had OSTEOPOROSIS but I did have. A full blood test he did was good as well.
If I had listened to that Doctor I saw at the Pain Clinic I probably would have started on STEROIDS. Luckily my Doctor did not agree with him and did the blood test. I wonder how many people are on medication that they don't need just because they don't ask questions and assume the Doctor is always right.
I don't think I will be having the LIDOCAINE INFUSIONS either. I talked it over with Wietse and Vel and Doctor Metta and we all agree that it could make things worse for the RSD. Am I willing to try? I am not sure.
My face where I fell is very red and painful I think the RSD has got to it. Took some extra tablets.
I seem to be taking a lot more just lately. Very tired but I walked a long way today.
5th
Started snowing about 3am. When I got up about 9am we had had about 3 inches.
Summer and I went on the common for our walk.
Snow covered tyres.
Hey where did all this come from.
Summer in the garden.So many people skiing and sledging. I think half of Lincoln was there it was really nice to see every body having fun. Summer kept high fiving every one and loved all the extra attention she was getting. It was very cold and foggy but good.
Summer on the common the snow is so white it makes her look a cream colour.
Fun on the commmon.
Look what I made.
SledgingThe afternoon walk did not go too well . Summer went after a young boy and his Dad with a sledge and would not come back. The boy was making a fuss of her. I shouted to the Dad to stop so I could get hold of her but he did not stop. He just carried on going to the top to sledge down.
Finally when, well past the part I usually go (I keep to the lower levels less pain that way) and in a lot of PAIN and feeling sick. I thought my body was going to explode. I shouted to a man to help me. He got Summer for me. I told her off and kept her on her lead for the rest of the walk. Even when we saw her friends which she usually plays with. She just kept looking at me as if to say what have I done. Coming down was very bad for my hips and knees. Once home I had to take more tablets. I am sure it would not have hurt the man and taken very little of his time just to stop so I could have got Summer. He seemed very angry for some reason. Maybe he did not like snow .
6th
Pain levels are high this I think is because of yesterday trek up the top of the common. Fell over also but did not hurt my self its hard not to fall at the moment the common is so slippery. Took a few extra IBRUES, they helped.
7th
Today I am at Pain clinic to see a physio who will hopefully will give me ACUPUNCTURE. The Physios name is Gopi Reddy. He knows Wietse. After a bit of talking he put in the needles 17 in all. Neck shoulders ears hands and legs and one in each foot. As soon as he put one in my RSD foot it went into a spasm. Quite painful I felt hot as well. He then left me on my own for a while. Wietse usually talked to me.
He came back and took the needles out. I told him I often bleed and I did. He said I was very leaky. We discussed what was going to happen next. I thought that I would now get ACUPUNCTURE for a few weeks but No this was not going to happen. I need to join a FIBROMYALGIA group and get massage and a talk plus a bit of ACUPUNCTURE. I said is this next week? No... starting April if I am lucky. I asked why not now, he said demand for physio is high. I left feeling very let down. I still felt hot and my foot and shoulders were burning and painful. I wish Wietse was still here.
Later on I felt a bit sick and the pain was a lot worse. Went to bed usual time but did not really sleep at all. My body was burning like I have not had for a long time probably in hospital last year.
8th
Even though I felt a bit rough I went to Pilates I thought it might help. The bus I got on had to go a different route because of road works, but the driver did not tell me even though the place I get off Heighington has only one village stop. He dropped me off I had not got a clue where to go he sort of pointed in that direction. I thought I better knock on a few doors to see which way I needed to go. One I knocked on was very lucky, he was going into Heighington him self. We were abut a mile from where I wanted to be. I was dropped at the bus stop. After thanking him I went on to my Pilates group now very late. Pilates went quite well but I did not feel too good managed most of the moves but felt very stiff. I got a lift home .
I received a call from Pain Clinic to say I have an appointment for LIDOCAINE INFUSIONS tomorrow. I said I have not bean told really anything about this procedure so can someone talk to me about it before I start anything. I am too sure if I want it as I said earlier. She said someone will get in touch over the next few days.
Later in the day the pain thought out my body was worse. I took some ORAMORPTH I have not taken this for a while. I still feel very hot and sick hopefully this will help. I did not get any better in fact worse being sick and shaking slurring my words. The lack of sleep did not help either. I could not even keep water down. I felt very weak. I think this was a reaction to the ACUPUNCTURE and maybe the extra medication I have taken. My face is very red again where I bumped it on the bathroom door frame.
I had a talk with Wietse, bless him. He told me to rest as my body is beginning to shut down again, do as little as possible. I could even have picked up a bug or something. I am to ring him in a few days to tell him about what I am doing about the LIDOCAINE INFUSIONS. He is a great help, I hope I build up the same friendship with Vel, that's if I can keep him as my Physio.
I am so mixed up at the moment and quite down because of the decisions I need to make. It was so straight forwards with Wietse.
9th
I feel very drained and week. Another phone call from the Pain Clinic explaining a bit more. The sessions are every week for three weeks then a rest. Most people get some relief from it . I asked if they had treated or knew the effect on RSD she said no one had bean treated and she did not know the after affects either. This has not really helped much.
Rested, actually watched a little television during the day.
Took Summer on the common for her afternoon walk and she ran off with a stray dog. Straight thought the park and across a very busy main road. I ran as best as I could to get her, shouting and screaming to get here. I was scared she would be hit by a car as it was five pm, rush hour starting. I could not see her I went down a little side road and there she was. The other dog had gone and she was looking very sheepish. I called her she came with her ears and tail down. I put her on her lead and smacked her. I was very mad with her but very relieved I had got her back with out injury. We went home by now it was snowing fast and covering the ground.
I dried Summer off and put her in her basket where she stayed for a while. She kept looking at me as to say sorry but I am not too sure if she knew what she had done.
Had Helen my hair dresser and her boyfriend Chris round for tea, a large Chinese takeaway. I ate what I could and felt better after it apart from feeling very bloated. I feel a lot better than I did last night.
10th
I feel almost back to my normal. Still a bit week .
Summer's walk went better than yesterdays she played with another dog they both enjoyed them selves. We have had about two or three inches more of snow. Very white and bright again a lovely day so nice to be out. Also the sledger's are back enjoying the snow. Half term starts now so the common will be very busy.
11th
Another cold day. Tonight is the running clubs annual meal and social advent, Paul and I are taking part. This year it is Ten Pin Bowling at the local alley. Russ my friend and past running partner is going as well. When we arrived I saw that we were using the night time mode. This has an affect on me, head ache and dizzy and a little bit sick feeling. I tried not to look at the lights that moved and flashed.
The flashing lights.
Russ having his bowl he was not doing too good..
My turn to bowl. Missed every thing twice, its quite hard to balance then roll the ball, then let go without falling over. That's without the special lighting as well.
Second try missed every thing again. Third try I got four points a start at last I hit some thing.
Me, just got a strike.
I am G at the bottom, Russ is R at the top.
After that rubbish bowling. The night went quite well. I did not get many points but I tried and quite enjoyed it. Better without the pain though.
On to the pub for food. We had rice and various hot dishes like chili, sweet and sour and curry dishes with baked potatoes and wedges. Very nice it was too. No puddings though. The three top scorers got trophies. I got the one, no surprise, for the lowest score, 41 . Every one there got a surprise present as well. Mine was a bottle of wine. Paul got a wrist sweatband and Russ got beer so they swapped . Every one happy.
There was a band but we left be for they started as the vibrations would have caused me a lot more pain. I had quite a lot as it was. Once home a few extra tablets IBRUES and a glug of MORPHINE. A lot of burning though out my body. A lot of me feels very cold, ice cold to touch.
13th
My Birthday- Wayne sent me a plant by Interflora an Azalea from him, Will and Timmy cat. . Andrew is getting me something when we go and see him next time in Amsterdam. Lindsay and the boys came round they brought me flowers, daffodils and tulips. Lindsay got me a Nomination bracelet that you can change and add to. Jay-Jay and Tommy-Lee came though with a Birthday Doughnut complete with a lighted candle. Very sweet.
Make a wish Nan.
Azalea from Wayne,Will and Timmy cat.
My bracelet from Lindsay and the boys.
My friend Lyn came and brought me a plant and chocolates. Russ and Karina sent me a voucher from Amazon. Paul came home with flowers and a card. Summer got me a card and a big bar of chocolate. I got a lot of cards and money as well.
Presents and cards.Later Paul and I went to see a film , The Woman in Black starring Daniel Ratcliff (Harry Potter).
The film was good, quite scary in places. Made Paul jump a few times. The sitting still made my back and shoulders hurt, my legs too. I feel very tight and painful. A nice day other wise though.
I have got a painful lump in my left leg I discovered early hours of the morning. I thought it was a bruise. I think it might be some thing to do with the vein, blockage or a rupture, as I have had trouble with them before.
15th
Neck and shoulders very tight painful and swollen. My leg with the lump hurts as well. Both my knees hurt now I think its the way I am walking to help my lumpy leg. Soon I will have no good bits left. Hopefully Vel will look and tell me if I need to see Doctor Metta. Pilates ok but still not able to do everything. But as some one said, I am able to do some.
I phoned the Pain Clinic to tell them I am not having the LIDOCAINE INFUSIONS at this time.
I feel that I am doing not too bad and don't want to make things worse and I did not find too much information about the side affects of my conditions.
Spoke to Wietse and brought him up to date. He is heading back to Holland next week, we will still keep in touch.
16th
My friend Tracy came round and brought me a birthday present a dog that you use as a door stop. Also a card.
His name is Hamish.Really nice. Summer kept trying to attack it then she tried to mother it, I think she thought it was her baby. So funny.
Play with me.Just wait till no one is looking I will get you.Another nice day apart from the PAIN and discomfort.
17th
Physio at last. We talked for a while about want had bean happening since he last saw me three weeks ago. I told him big problems with my neck and shoulders. I showed him my lumpy leg and said I need to see a Doctor as soon as possible. He started to massage my neck, very tight and stiff and so tender in places, very painful. My neck kept going into spasms he worked to get it released. He then stretched it and released it a bit. He stopped for a while and let me have a rest then more stretching. I am to carry on with the exercises and try not to turn my head too fast. Also try to relax a bit. I find this very hard as the RSD does not seem to let me and goes in a strop and causes more pain. A bit of good news the fluid in my right knee has just about gone and is less painful. I asked if I could have a run yet but Vel said leave it a bit longer.
18th
A lot of pain in my shoulders and neck the worst I have had since be for I started with Vel.
My neck and shoulders are less stiff though. Took IBRUES and HYDROCODINE that helped a little.
20th
Today I am seeing Doctor Metta about the lump on the vein in my left leg. He had a look and said it was PHLEBITIS, which is inflammation of the veins. The lump I told him had gone down a little and was not as hot and painful. He said I was over the worst and to apply warmth and cream to help. He also said it should go because I am fairly fit and not over weight. If it gets worst or more painful I am to go back. I had this about the same time last year but lower down around the ankle area.
I asked Doctor Metta about getting ACUPUNCTURE on the NHS but he said this was not possible as I aready have Physio with Vel he said if I wanted it it would be instead of Vel not as well as. I did not think I would get it but worth a try.
Pain Clinic are meant to be getting me some but I don't hold out much hope. Last week I cancelled my LIDOCAINE INFUSIONS only to be contacted with a appointment for them to start. I would have to go private at a lot of cost to me, but if that what it takes I will. I know this works.
My neck and shoulders have improved a lot. I am now able to move about more freely.
22nd
Pilates -Jo's Birthday. Adele aranged for everyone to sing Happy Birthday to her. She said the last time that happened she was still at school, junior I think she said. She was quite overwhelmed. I will make her a cake next week as I did not feel up to it this week.
Pilates was painful and every where stiff. Did my best and I did feel looser after the session. Very tired today I think I will rest this afternoon with Pup. Wietse is on his way home tonight back to Holland. I will miss him a lot we had become good friends. I know he understood the way I felt.
23rd
I have a bit of a cold, did not feel too good to start with but as the day wore on felt better. My leg has improved a lot not as painful now and the lump is softer now. I think the knee length socks help support it. The weather has bean Spring like warm but windy. The walks on the common were very good and made me feel a lot better. Amazing what the sunshine can do to lift moods.
24th
Physio - Not as painful as last week. My neck and shoulders are not as tight and tender. Vel massaged them and my foot. He looked at my inflamed leg left and was amazed how much it had improved.
I asked him about my light headedness and sick feeling and he said he thinks its all to do with my neck and the nerves there .
Bought summer a ball to play with a soft squeaky one which she squeaks all the time. She has bean chasing it and charging around like a loony. Very sweet.
Play with me.
My whole body feels sore, tight and unresponsive. Over the last few day I have taken a lot of 400mg IBRUES they help a little.
Got my friend Russ staying tonight. His Sister has just had a baby 9lb 6 oz called Lauren. So now he is Uncle Russ.
My brother David and sister in law Bev came today and brought me a late birthday present of some plants for the garden primroses, they were all ill on the day.
Plants from David and Bev.Had a very bad spasam, not in my RSD side but on the left side. My big toe curled under touching my sole of my foot . I could not release it as my calf as tighten up. I sat and tried to breathe the pain away. After about five minutes it relaxed enought for me to massage it. The pain was excruciating. My toe bruised up and had a line where it had doubled over. Still painful but a lot better.
27th
Hospital today for a mamagram. A lot of people hate these but I find them not too bad, uncomfortable yes, but I am used to that. I lost my little bracelet that Jay-Jay made me as well. I rung up but it was not found. This upset me as I told him I would always where it. He said dont worry Nanny I will make you another one. I am hobbling around as my toe is still very painful when any weight is put on it still quite bruised and sore.
28th
Meal out tonight with Paul and some of the family plus the young boys Jay-Jay and Tommy-Lee. We are at a chinese Oriental Buffet all you can eat a late celabration for my birthday. I got an belated present from Tracy, Flowers and a card which was really nice of her.
The boys ate like it was there last meal. A chinese man spoke to Jay-Jay and Lindsay asked what he said, his reply was I don't know I don't speak chinese. We all laughed. I think we all enjoyed it. I certainly did.
Lindsay and Jay-Jay.
Tracy and Tommy-Lee
Jay-Jay pulling a funny face.
Me
Tommy-Lee with his ice cream.
Paul eating.
Tracy.
Tommy-Lee happy.
Lindsay.
Paul.
I don't think she got the hang of the chop sticks.29th
Pilates- Quite painful again could not do all the moves. I am at least able to walk a lot better now as my toe is not as bad. Gave Jo the cake I made her. Still light headed and sick feeling though. I will ask Vel if there is any thing I can do to help it.
Well another month gone and me a another year older. They say you are as old as you feel, some days really old. Hope things are going your way and pain free as much as possible .
Love Gill.
