March 2nd
Not a good night sweating buckets, I had the window open a bit but the wind must have caught it and fully opened it as a few times, I woke up cold. The body sensed it and warmed me up, sweating again. Anybody want to swap with me? I thought a few years ago I was lucky not to have this sweating annoyance.
The DULUXTINE I am taking I think makes it worse, I looked into it and I was right- excess sweating is one of the many side affects.
I feel better than I did at least I am standing now. I look very pale and have lost weight again. Seven stone thirteen now, I had managed to get up to eight stone two pounds. Not for long.
4th
Last night I watched Paula Radcliffe's rise to fame. She is doing the London Marathon this year but only as a normal runner then retiring. I wish her well. While watching this I began to think of my running days. Where would I be if I not had fallen, 2005 was going to be my Marathon year. Not in Paula's class- nowhere near but, still jogging along. Or at least I was.
Walk on the common with Summer NICE. I still feel a bit weak but defiantly on the up again.
6th
Jay-Jay my grandson is eleven today, its hard to believe he will be going to secondary school in September. Happy Birthday Jay-Jay. We have got him a Minecraft hoodie, a computer game, a monkey and a few sweets/chocolates. He mostly got things for his computer, also a twister game, a minecraft t shirt, a domain name as well, Jay-Jaysgames.com and other things plus money.
7th
Lindsay's here with her family, we set up the trampoline for Jamie-Lee (she got this for Christmas but it had not bean set up) so warm today like Spring. Jamie-Lee loved bouncing up and down. I feel a lot better now still not right yet. I have stopped the DULUXTINE and I will let you all know how it goes.
8th
I have Jamie-Lee today while Lindsay takes Jay-Jay and Tommy-Lee out for the afternoon to Skegness. We had a good day playing and up and down the stairs to the toy cupboard a few times. She had tea with us as well. Ate the lot pie, mash, broccoli, carrots and gravy, she loves gravy.
9th
Fair night, awoke a few times but not sweating like I was.
Physio today I missed last weeks because I was ill. Seeing Bel today and for the next few weeks.
21 needles in all. feet, legs, upper and lower, arms, neck and head also under my nose for sinus problems. These were weird as I could see them- they were like having whiskers. I stopped at the College for some soup and a roll very nice, homemade pumpkin soup.
10th
A small seizure in the night in my sleep Paul said. Today Paul and I are heading for the Royal Hallamshire Hospital for an appointment at the Neuro Science Department and Doctor R.A. Gruenewald.
The journey going was good a fair bit of pain but ok. Only one stop, about fifty miles away in total.
We arrived early and had a sandwich and drink before the appointment. This Hospital is huge so many entrances. Ours was number nine and twelve floors up you could see for miles. The Doctor was running a bit late but I did not mind.
At last it was my turn we shook hands and he asked me all about myself and what Lincoln Hospital had said about my seizures. I then listened to him he explained to me what I go through everyday, about the FIBOMYALGIA and the CHRONIC FATIGUE. Why this was happening, and like I thought, the seizures are like a safety valve releasing, before any more damage is done. I felt like he knew me very well but we had only just met. There was someone who understood all my conditions combined. He felt I was very unlucky to have so much. He was very interested in my life before RSD as well. Living in the fast lane as he called it, also about my Target paper round, delivered top speed. He went on to say I need to slow down but it very hard as my brain and thinking is telling me to go, go, go and my body, stop, stop stop.
A very difficult thing to balance. On the whole very pleased with the way I cope. Also quite surprised I was not on more medication. I said I keep knocking them off one by one. That can only be a good thing, we both agreed, so hopefully my body will start to heal itself. Try to pace yourself he said and keep out of Hospital as its not the best place for me to be. I felt like a weight had bean lifted and pleased the things happening were normal. We parted after an hour and fifteen minutes appointment. What a top man, wish he was in Lincoln Hospital. Lincoln Hospital seem to take so long to set things up. For instance if I wanted to talk to someone, ITS TWO YEARS BEFORE YOU EVEN GET CONSIDERED then you go are on the appointments lists. I do not need to see him again as not much can be done for me. Unless things change of course.
11th
Pilate's again I have not bean there much this year. A good session, I ached a lot during it and loads of spasms. I still enjoyed it though, nice to be back at the other group soon if there is a place, I would like to go back to my old class.
12th
Out in the garden, so warm and sunny here. Just tidying up and trimming a few plants. Summer is helping as well. She loves the water as soon as she hears it she goes mad biting the water and getting very wet. She has long hair at the moment so drying takes a while.
A good day for me as well. I think I have got rid of this virus now. Hope that's it now for this year.
14th
Lindsay here with everyone. Gave Jay-Jay his cake he was very pleased with it..So was I.
Minecraft cake.
Jay-Jay and Jamie-Lee, looking longingly at the cake.
Jay-Jay in his tshirt that Andrew got him.
The cake was very nice, one of the best I have made for a while.
15th
Mothers Day. Lindsay got me loads of things. Andrew will catch up with me at a later date. Wayne rung up and wished me a Happy Day. He is getting me something soon. Thank you all very much.
A nice quite day.
16th
Acupuncture, 24 needles in all. 14 in legs and feet, 4 in arms and wrists, two in my left hip and 2 in my face. Hopefully this will help my sinus. My nose went numb. Very hot while the needles were in.
I feel like this was a good session. I will know for sure in a few days time. I walked home, later my ankles and knees were swollen.
17th
A fair nights sleep, woke to pain again in my head. A lot of places where the needles were inserted all so hurt.
I looked after the children while Lindsay went to parents evening. they were all very good but Jamie-Lee is like a coiled up spring so much energy.
Later my knee and ankle swelled up, quite painful.
18th
Pilate's I have paid up for another session with the arm chair ones as there are no places in my original class. Jo made it a bit more interesting than usual by adding more stood up moves. I enjoyed it more than previous sessions. I did hurt a lot though. As usual I felt a lot looser later in the day.
I need to see about getting a new washing machine as mine has got so noisy. The bearings have come to the end of there life. We have to turn the television up to hear over the sound of the spinning cycle. The one I chose is a Bosch bought from Tony Edens just near our house. This machine is meant to be very quite some of the reviews say that you can hardly hear it even on fast spin. Looking forward to a quite time.
19th
Not a good nights sleep, So what's new, more disturbed than usual. A very bad headache as well..
Helen came and cut my hair as I looked more like a hedge, my hair has grown so long. While Helen was cutting it the left side hurt to the point of being painful, electric shock like pains. I did not think your hair could hurt???. Headache still as bad when I went to bed. Noise is like magnified, just a rustle of paper feels like its inside my head.
20th
Eclipse today-- when I got up it was quite dark, the eclipse had already started.
I am at the dentist for a check. All well there. They wanted to clean and polish my teeth but I said my head hurt too much today. Bit of shopping then home by bus.
My head is going crazy I even put on one of the migraine cooling pads to see if it would help, this did a bit I am also taking IBRUES every few hours. Its one of those heads where it's hard to think or do much at all. In the end I went to bed, the pain had got the better of me. My voice is raspy again. please not another virus. Later the headache just went at last.
Summer missed me so we let her come up for a while. She is not usually allowed up stairs.
21st
Weird night, very hot, wet through with sweat. I thought this was all over or at least better. Throat very tight and sore. Here we go, another something. My voice got worse throughout the day. Ending with not much at all. The children are all here and most of the time good.
22nd
Very tired no voice and a bad head again. A small seizure during the night.
I spoke to Wayne and he could not stop laughing, he said I sounded like Micky Mouse.
23rd
Acupuncture- Bel today, much the same as last week plus a few extras. A lot hurt, more so in my legs and right foot. 23 in all. Weird reactions from most of them. I still think this is helping me but every week is different regarding the reaction to the treatment.
Summer had a bath and looks snowy white. Not for long I don't think,
24th
Seeing Doctor Mehta to bring him up to date and to tell him all about The Royal Hallumshire Hospital and what they said. I am going to join a Code Group study to be monitored and hopefully get a few answers to my problems. He listened to my chest and found no signs of infection. Just another VIRUS. Lindsay has something similar and Wayne is not well either. A quite day for me I am so tired at the moment. Washing machine has arrived and bean fitted. Now to see if its quite. Oh-- so quite, sorry Bjork. Worked very well, I am pleased with it so far.
25th
No Pilate's for me today I feel like I would break into bits if I tried. Jut a few things to do here and there. Throat not as bad but not the best.
26th
Whoa what a night. I was very tired when I went to bed. About two ish I had a seizure not a big one, but one all the same. Next came the spasms full body ones. I tried to remain calm and Wietse breathe. Full blown electric shocks next. Just like someone had plugged me into the mains. So much pain I could hardly breathe, coughing and choking. I eventually settled down a bit. Another longer seizure followed, my whole body decided to go hyper sensitive so much more pain and I'm still having trouble breathing. I used my nebuliser (I was given this by Cilla when I had a bad chest) took two 400mg IBUES plus a cup of tea all provide by Paul. The pain started to settle. Around six I was comfortable enough to sleep. I woke properly at around eleven thirty.
I had no more seizures later, but felt very tired. I also have a few bruises where the acue needles were placed.
My seizures are brought on by pain and my body having to cope with too much -- like a pressure cooker when you forget to put water in. I did this once and the top flew off. I am not saying my brains will shoot out. But at times it feels like it though.
Summer got her walk later in the day, Paul came to keep an eye on me.
29th
Rained all morning so Summer went out in the afternoon. I went right to the top of the common. This is something I have not done for nearly eleven years. I stood at the top and shouted Sod you RSD you will not get me. WHY NOW... Because I felt I could. Like Thomas Tank Engine-- I know I can, I am sure I can. I felt good, next step RUNNING. I do hope so, but as I get better, I get knocked down again like the song by Chumbawamba.
"Tubthumping", "I Get Knocked Down",anarcho-punk band Chumbawamba on 11 August 1997.
31st
Going to Age UK today to see if I would like to volunteer there. Spoke to a very nice lady called Sam. I think I would like to help out with them as a befriended later but first in the kitchen as help is needed there most. I will start very soon.
Group of Nyree, Michelle, Malcolm, Paul, Me, Yvonne and Julie. At The Four Seasons, Dunholme near Lincoln.
As I said I got a new washing machine. A Bosch or as I call it a Bish Bash Bosh. This is a 1400 spin speed. About 35 years ago an average washing machine would be a 800 spin speed. What will it be like in another say 10-20 years time?? 2000 spin speed with clothes ready to put on??
The DULUXTINE withdrawal went well- the first few days I felt very weird, like people were after me and closer to me than they were. Headache, a different type generally a strange few days. Noise was an issue too. I am fine now and feel a lot better in myself. I am able to think and remember things clearer. I am not going back on it. I did not want to take in in the first place. I suppose it helped me when I needed it. I can see why people give up and go back on these type of drugs, but not me. well I don't intend to anyway.
Well all the best to you all thank you for reading my Blog. Love Gill
Later my knee and ankle swelled up, quite painful.
18th
Pilate's I have paid up for another session with the arm chair ones as there are no places in my original class. Jo made it a bit more interesting than usual by adding more stood up moves. I enjoyed it more than previous sessions. I did hurt a lot though. As usual I felt a lot looser later in the day.
I need to see about getting a new washing machine as mine has got so noisy. The bearings have come to the end of there life. We have to turn the television up to hear over the sound of the spinning cycle. The one I chose is a Bosch bought from Tony Edens just near our house. This machine is meant to be very quite some of the reviews say that you can hardly hear it even on fast spin. Looking forward to a quite time.
19th
Not a good nights sleep, So what's new, more disturbed than usual. A very bad headache as well..
Helen came and cut my hair as I looked more like a hedge, my hair has grown so long. While Helen was cutting it the left side hurt to the point of being painful, electric shock like pains. I did not think your hair could hurt???. Headache still as bad when I went to bed. Noise is like magnified, just a rustle of paper feels like its inside my head.
20th
Eclipse today-- when I got up it was quite dark, the eclipse had already started.
I am at the dentist for a check. All well there. They wanted to clean and polish my teeth but I said my head hurt too much today. Bit of shopping then home by bus.
My head is going crazy I even put on one of the migraine cooling pads to see if it would help, this did a bit I am also taking IBRUES every few hours. Its one of those heads where it's hard to think or do much at all. In the end I went to bed, the pain had got the better of me. My voice is raspy again. please not another virus. Later the headache just went at last.
21st
Weird night, very hot, wet through with sweat. I thought this was all over or at least better. Throat very tight and sore. Here we go, another something. My voice got worse throughout the day. Ending with not much at all. The children are all here and most of the time good.
22nd
Very tired no voice and a bad head again. A small seizure during the night.
I spoke to Wayne and he could not stop laughing, he said I sounded like Micky Mouse.
23rd
Acupuncture- Bel today, much the same as last week plus a few extras. A lot hurt, more so in my legs and right foot. 23 in all. Weird reactions from most of them. I still think this is helping me but every week is different regarding the reaction to the treatment.
Summer had a bath and looks snowy white. Not for long I don't think,
Look at posh me--Summer--no way.
So clean and fluffy.
Hairslide did not stay in at all.
I had to tie her hair up as its so long.
Seeing Doctor Mehta to bring him up to date and to tell him all about The Royal Hallumshire Hospital and what they said. I am going to join a Code Group study to be monitored and hopefully get a few answers to my problems. He listened to my chest and found no signs of infection. Just another VIRUS. Lindsay has something similar and Wayne is not well either. A quite day for me I am so tired at the moment. Washing machine has arrived and bean fitted. Now to see if its quite. Oh-- so quite, sorry Bjork. Worked very well, I am pleased with it so far.
25th
No Pilate's for me today I feel like I would break into bits if I tried. Jut a few things to do here and there. Throat not as bad but not the best.
26th
Whoa what a night. I was very tired when I went to bed. About two ish I had a seizure not a big one, but one all the same. Next came the spasms full body ones. I tried to remain calm and Wietse breathe. Full blown electric shocks next. Just like someone had plugged me into the mains. So much pain I could hardly breathe, coughing and choking. I eventually settled down a bit. Another longer seizure followed, my whole body decided to go hyper sensitive so much more pain and I'm still having trouble breathing. I used my nebuliser (I was given this by Cilla when I had a bad chest) took two 400mg IBUES plus a cup of tea all provide by Paul. The pain started to settle. Around six I was comfortable enough to sleep. I woke properly at around eleven thirty.
I had no more seizures later, but felt very tired. I also have a few bruises where the acue needles were placed.
My seizures are brought on by pain and my body having to cope with too much -- like a pressure cooker when you forget to put water in. I did this once and the top flew off. I am not saying my brains will shoot out. But at times it feels like it though.
Summer got her walk later in the day, Paul came to keep an eye on me.
29th
Rained all morning so Summer went out in the afternoon. I went right to the top of the common. This is something I have not done for nearly eleven years. I stood at the top and shouted Sod you RSD you will not get me. WHY NOW... Because I felt I could. Like Thomas Tank Engine-- I know I can, I am sure I can. I felt good, next step RUNNING. I do hope so, but as I get better, I get knocked down again like the song by Chumbawamba.
"Tubthumping", "I Get Knocked Down",anarcho-punk band Chumbawamba on 11 August 1997.
31st
Going to Age UK today to see if I would like to volunteer there. Spoke to a very nice lady called Sam. I think I would like to help out with them as a befriended later but first in the kitchen as help is needed there most. I will start very soon.
Our fourtieth Wedding Anniversary
Paul and I.
Flowers received from Paul.
Now forty years on and Nan to these three Little monkeys.
Jamie-Lee, two and half.
Jay-Jay and Tommy-Lee eleven and eight.
As I said I got a new washing machine. A Bosch or as I call it a Bish Bash Bosh. This is a 1400 spin speed. About 35 years ago an average washing machine would be a 800 spin speed. What will it be like in another say 10-20 years time?? 2000 spin speed with clothes ready to put on??
The DULUXTINE withdrawal went well- the first few days I felt very weird, like people were after me and closer to me than they were. Headache, a different type generally a strange few days. Noise was an issue too. I am fine now and feel a lot better in myself. I am able to think and remember things clearer. I am not going back on it. I did not want to take in in the first place. I suppose it helped me when I needed it. I can see why people give up and go back on these type of drugs, but not me. well I don't intend to anyway.
Well all the best to you all thank you for reading my Blog. Love Gill
