Usual sort of day knee hurting tired from lack of sleep. Cold as well. Knee later played up a lot, the sort of pain that does not go despite what you take or do. The position that's best for the knee is not the best for my hips so one has to suffer. Finding it quite hard at the moment.
17th
On the common and met Cilia's son (Ben's son in law from next door) We talked a bit and he threw the ball for Summer which she enjoyed a lot. Puffed out when we got back.. that saved me quite a bit of pain- thank you Wayne.
18th
Day out at Joys today so that will be good. We only sit and chat but its different surroundings. She has a lot of very old things. Like me she loves brass and old past things.
Tracy came round with Jamie-Lee later and they picked up Lindsay. Nice to see them, Jamie-Lee was telling me all about School and that Tommy-Lee her brother had bean a bad boy. Tea late today too.
19th
Age UK not busy to start with but that was good as short staffed again. Jenny remarked we are not busy are we-- Shh I said, and sure enough we got manic. All the tables were full and people waiting. I could have done without it being busytoday as not the best.
The office had a big meeting and took all the glasses and most of the cups they said they needed them--what about the paying customers what do they use. As it was all the glasses had gone, then the meeting ended and the clean ones were brought back just in the nick of time.
Did not leave till gone 3pm Jenny at the same time.
Looked around town for present ideas then home.
John bought round a pair of trousers to alter by next week had a look. Think I can do them.
20th
Took Summer for her walk and met young Ben on the cobbles so he came too. He threw the ball for Summer so another good day for me. He was telling me all about his School, the last year as a Junior.
Started doing John's trousers got them tacked up and ready for the machine this went fairly well. Since my right foot has not got a lot of feeling (where RSD first started) I have to use the left foot. At first this was hard as the right foot is the dominant one, but in time I got used to it. The trouser's look good and I think John will be pleased and a bar of chocolate for me. Yum Yum.
21st
Knee pain CHRONIC today this is messing up the RSD big time. Started Paul's trouser they need a lot more some cutting off and a new hem making.
22nd
Cold start but sunny, nice on the common. Watered the green house just about all the tomatoes have gone but still plenty of cucumbers left. No frost as yet, so they will keep coming.
Still knee hurt not bean as bad as this for a while. Would not be as bad but like I said it sends pain thought out my body nothing escapes today. Taken a lot of extra tablets with little affect. RSD if it chooses can and will make your life HELL.
23rd
In town today, pain bad but trying to ignore it. Therapy shopping, did quite good too, got quite a few presents for Christmas and the birthdays coming up. Quite warm too.
Later I had my bath around 11.30pm really looking forward to this Epsom salts and Badedas. I got in and my knee pain shot up and took over my whole body. I think my knee went underneath me but not sure. The next thing I remember is splashing about and bubbles in my mouth. I had had a seizure probably more than one. Paul came in and found me semi conscious and water all over the floor. He got me on the chair with the help of Hannah. I came too quite well, and thought that was it. NO IT WAS NOT. Paul said 24 OR MORE SEIZURES FOLLOWED EACH ONE WITH FULL BODY SPASMS. This went on till around 5am. I landed in hospital but only for a little while till I stabilised. Sore shoulder where I think I hit the bath sore face too and right arm. Home around 6am feeling sore and battered, tight muscle's and exhausted.
PAUL's BIT...
God you all don't know how I hate doing and seeing Paul's bit as it's always bad news, pain and damages to Gill.
Around 11-30pm to 11-45pm I don't know why but I went into the kitchen. I heard splashing about coming from the bathroom, I shouted Gill are you alright, no reply. I went into the bathroom and Gill was having seizures in the bath, the first time in about 18 months. I managed to keep her head above the water level, as she usually has it quite full, at the same time as trying to pull the plug out. She stopped a seizure then shortly went into another, I was concentrating on her not injuring herself too much in the bath as our bath is a steel one. But she had already got red marks around one eye and a shoulder, The bath was empty and Gill's seizure had stopped. I tried to get her out the bath but I was in way too much pain myself trying to lift her as I'm having disc and sciatic nerve problems. Gill slowly realised what was happening and I asked her if it was okay for me to shout Hannah, our son Andrews girlfriend. I covered Gill up as best as I can before Hannah came downstairs. We managed to get Gill out the bath and onto the bathmat. I think she had another seizure. After a few minutes I made Gill decent, putting on her pyjamas and then we supported Gill walking to the dining room and onto her electric reclining chair. I adjusted it to try and make it safer for her. By this time Andrew had come downstairs. Her seizures then continued, one after another after another. I gave her 10mg of Oramorph, then an hour later another 10ml Oramorph then a short time later I gave her 300mg of quinine which Gill suggested. With the seizures continuing Gill's pain scales had hit 9 to 10 as she was also having full body spasms. Imagine cramp in your calf but affecting the whole of the body. I said to Andrew and Hannah I think its about time to call for an ambulance. After a few minutes Gill agreed to this. I dialled 999 and within 10 minutes a paramedic was at the door. I explained what had happened. He spoke with Gill and took her temperature, blood pressure and oxygen sat's. These were all fairly good. He then fitted a cannula. I think he gave Gill Oramorph and Diazepam through the cannula. Gill started to settle down and the Paramedic said I'll give her another 5 minutes then I'll be happy to leave her here. He just finished the sentence and she had another seizure, he then called for an ambulance to take her to A and E. The ambulance arrived and shortly after they put her in the ambulance. It was around 15 minutes before it set off as she had more seizures. The ambulance left about 4-00am. I arrived at the Hospital about 4-10am to 4-15am and Gill was in a bay and had been attended by a couple of nurses, she then had more seizures and the nurses were quickly to her. The lady Doctor came to see Gill and said that she had looked at Gill's notes and she said she knew what RSD was. That's about a first. Anyway the doctor was really nice and understanding. I think they then gave Gill some more pain medication. The seizures had stopped and around 6-00am we were told by the doctor that the best place for Gill was in her own bed and that she had to take things easy for about a week. We arrived home about 15 minutes later to be greeted by a tail wagging Summer dog. We settled down a bit and had a brew. We went up to bed about 7-00am. Thankfully up to now she hasn't had any more seizures. She had at least 24 seizures and they aren't little shaky one they are arms and legs flying all over the place, but weren't the worst she has had in the past. We are sure that the really bad pain from her knee started the seizures. It seem that when Gill has seizures she is always in a tremendous amount of pain. I love you Gill....
25th
Woke to a body racked with pain, stomach very pain full, headache. The seizures could start again so resting and just moving around. slowly.
I sent Wayne (our eldest son) my blog pictures of bruises and he said it looked like I had bean beaten up. I said it felt like it too.
Had a bath but with Paul in the bathroom this time. I felt like a child again.
26th
Feeling a bit more with it but pain everywhere. Went with Andrew to take Summer on the common. I felt more exhausted when I got back. Even though these seizures are not epilepsy they are much the same just from a different source. Nervous system and not the brain like epilepsy. I think sometimes they aren't taken that seriously by some medical staff. This time I got good treatment at the hospital or as much as I can remember. as I was out of it a lot.
27th
Big bruise on shoulder and swollen wrist and black eyes, left one the worst. Feeling more me and as time passes getting more in the way of thinking that the seizures have passed.
29th
First frost of the winter cold and white all over. We are just in winter too as the clocks went back Saturday night. Nice walk with Summer still hurt quite a lot but improving more everyday.
30th
I have an ongoing fight with PIPs at the moment. They do not know about RSD so I took them an easy to understand print off from a RSD site high lighting the bit, USE IT OR LOOSE IT when being assessed. She hardly looked at it scoring me 0 for everything. (meaning no payment-- I used to get a little bit of money with DLA). I told her I can still do things because of my frame of mind to want to keep going. I got a mobility scooter, started Pilate's, got an electric bike so I could be near normal. Now I am being penalised for it. If I had not done theses thing I would be in a wheelchair now probably permanently.
No I was not kept in Hospital this time, which is good, but most of the time they don't know what to do anyway, a few do but not many. Weeks of being kept in a hospital bed does not help but how can the Doctors let you get up when having repeated SEIZURES all the time. I was not safe and when up, sustained injury's all the time. A no win situation. RSD is little understood so most people do not try and think you are being awkward with them.
Writing this my fingers miss the keys and I spell things wrong. My finger, neck and shoulders hurt so it takes longer. As long as I am able I will continue with this blog. So please keep reading it and try to understand how an RSD person feels. Hopefully they have gone now, that is the SEIZURES-- so I can get back to my life.
More bruising but the swelling has gone down a bit and is less painful now.
31st
Well last day of the month a sunny but chilly one. Andrew came on the common with me and Pup today. That was nice of him, he does enjoy a walk with Summer the same as I do.
Joy came round and we had a good chat she is doing well apart from her normal aches and pains.
She was surprised how much I had hurt myself during the SEIZURES. My face is just about clear from bruising now, but my arm is still black, I ache a lot around my ribs and back but that also is getting better. .
Well not a good end to the month. I thought these SEIZURES had gone but no they are still hanging around just waiting for an opportunity to strike. To cause more pain and discomfort to the already over loaded body. I have had probably around 30 plus of these dam things, don't you think that the RSD could see that and my body is wreaked enough without anymore. No it does not care one bit it seems the more the better for it. RSD has wreaked my life big time. All the things I took for granted, every day things like, having a part time job, walking, sleeping, relaxing, cooking unaided in the kitchen, going to see a film, knitting, sewing and crafting. Having a nice bath, going on a bus, car journeys, nights out, noise, vibrations, party's. Staying in bed when in PAIN. Not off the scale things are they? Most of these are hard for me or impossible at times. Running was my release, but how can I run ???? as hardly able to walk most days-- well that's not really true, Yes I can walk but not without pain. Another thing, people see you out and think she's alright. People think you are being antisocial when you don't go round or want to do things. I would love to do the every day things but I just can't anymore. Some/most days this gets to me, I am not a TV person or staying in one. I am an active person. Walking running were my joys but not no more. People say to me at least you are not in a wheelchair all the time. NO I NOT-- due to the hard work of me fighting through the pain. BUT there comes a time when there is not a lot of fight left.Wheelchair scares the shit out of me.
I have an ongoing fight with PIPs at the moment. They do not know about RSD so I took them an easy to understand print off from a RSD site high lighting the bit, USE IT OR LOOSE IT when being assessed. She hardly looked at it scoring me 0 for everything. (meaning no payment-- I used to get a little bit of money with DLA). I told her I can still do things because of my frame of mind to want to keep going. I got a mobility scooter, started Pilate's, got an electric bike so I could be near normal. Now I am being penalised for it. If I had not done theses thing I would be in a wheelchair now probably permanently.
No I was not kept in Hospital this time, which is good, but most of the time they don't know what to do anyway, a few do but not many. Weeks of being kept in a hospital bed does not help but how can the Doctors let you get up when having repeated SEIZURES all the time. I was not safe and when up, sustained injury's all the time. A no win situation. RSD is little understood so most people do not try and think you are being awkward with them.
Writing this my fingers miss the keys and I spell things wrong. My finger, neck and shoulders hurt so it takes longer. As long as I am able I will continue with this blog. So please keep reading it and try to understand how an RSD person feels. Hopefully they have gone now, that is the SEIZURES-- so I can get back to my life.
At least I have you Pup.
All the best to you all. Love Gill.
No comments:
Post a Comment