November(2)

17th

Eye test today the optician said my eyes were good and have improved since the last test. They were damaged when I had the seizures in and by the pool on holiday August 2016. Left eye the worst as it was scraped. My eyes took a long time to recover needing two new stronger lots of glasses. So its good news all round no test for two years.


18th

Sorting out the garden which has bean neglected this year. Got all the dead plants and weeds into the green bin. I took a lot of cuttings of fuchsias and put them in the greenhouse, hopefully some will take root. Some will be for Wayne's garden as there is a lot.

19th

Summer had her haircut today looks like a little pup again. So soft and white.


 
  So pretty.

20th

Spoke to Doctor Metha about my knee (this was a phone call not a visit) he said it will need surgery, whether keyhole or more major he does not know. I asked him about muscle relaxants and he said for me BACLOFEN is the best. I still have some from last time so I have started taking them, only one a day to see if this helps as only a little help needed.

I like Doctor Who and have bean watching this, I am not sure about the new one- Jodie Whittaker.    A lady this time but, we will see, this weeks was good.

21st

No Pilate's today knee quite sore. I can not get it to stop hurting at all.

Played Scrabble later with Andrew and Hannah. A good game I won by one point. I kept getting vowels, seven at one point. Andrew had none.

A lot of pain in my legs when I went to bed.

22nd

Met a lady on the South Common that rescues Westies and she had a new one. This dog lost his lady owner, she went into Hospital and never came home, then was mistreated by her partner, not being fed and was hit. Poor dog first he looses his Mum then gets mistreated. If he did not want the dog why did he not bring it in sooner had it not suffered enough ?
Anyway it's doing well now he came right up to me and was getting some fuss. All her rescue dogs have come to me for a fuss but not to anyone else. Maybe they sense kindness.

23rd

AGE UK very busy today every table taken up all the time. Even when Jenny and I left at 2-00pm there were still 4 tables in use. Bit of shopping then home. I got myself some new pyjamas soft and fleecy so should be warm, might help my legs keep warm too.

Very tired, more exhaustion I hurt just about everywhere, RSD is having a field day with my knee. Even the right one now hurts a lot. Just leave me alone a bit will you. I have forgotten whats it like
to have no pain.

24th

Got a letter from the knee consultant cancelling the appointment-- what this time booked into bum surgeon or something. The next letter I got on the same day gave me a new appointment for the next week. When will I see someone hopefully then, unless.!!!!.

Went to the crematorium to see Mum, Dad and Phillip- I put on some flowers. Stopped a while then Summer and I headed off home. On the way back Summer got tired and I decided to carry her a bit. A fair walk for her and her little legs I picked her up, and she jumped and slipped to the floor. She seems alright but later on limped and was hardly walking. I thought she may be broken her leg.
I pressed it but it seemed alright. I decided to hang on going to the vets and see how she went on.
She did improve but was in a bit of pain.

25th

Summer's leg I think is a bit better she is still limping but is using it more. Gave her a rest no walking on the common today.


Shopping today with Paul. Got a few presents for Christmas.

26th

More improvement with Summer's leg. I am so pleased no vets trip needed this time. I think she had pulled a muscle.

Making bread today, I could not make out the quantity needed-- it might as well have bean in Chinese. Put in too much salt.  My mind could not work it out at all. I am told this is BRAIN FOG common in RSD. I know this is happening more now than it used too. Also staring black out seizures. I hurt everywhere, standing, sitting or laying.

27th

Hell of a lot of pain in my joints never letting up at all. PLEASE STOP I HAVE HAD ENOUGH.

My face to face with Doctor Metha has bean changed again. When I see him it will be now on 11th December and the next day for my knee unless it's changed again. I was hoping to see the knee consultant first but at this rate I will be lucky to see anyone.

28th

Took Summer on the Fairground Common as its flatter. I have bean going down Sincil Bank the last few days and not very far either, better for her at the moment. Her leg is good, hardly a limp now but I can see its not quite right yet.

My knee is very tight and sore today even when sitting down the pain will not stop..

30th

Age Uk very steady almost quiet but it was nice not to be rushed off our feet.
The volunteers coordinator has left suddenly, she will not be missed by us the volunteers as she was not a peoples person and hardly spoke to us..

Squidge came round and asked me to look after Ben and Emmie (two doors away) for a few hours while they went out, I said I would. Another knock on the door a bit later, and Ben's (from next door) carer was stood there. She was worried about Ben as he was unresponsive. One of Bens relations came later and we both stopped with Ben. I held his hand and talked to him griving him the occasional kiss on his head. We ended up calling an Ambulance as we could not get any of his close family on the phone. He was not good, but they did not take him to hospital. He is coming to the end of his life. I got to look after the children Ben and Emmie a lot later than expected.

 I went back round to next door later, and Ben's son was there. I said if you need me I will sit with him. His other son arrived later so I was not needed. I went to bed around 5am but could not sleep for a long while.

December 1st

Ben slipped away around dinner time. His same carer came round very upset as she thought he had gone.  I gave him a kiss and held his hand to say good bye. We phoned 999 and they came to sort him out and confirm what we had thought.

REST IN PEACE BENYOU WILL BE MISSED.

November (1)


November 1st

B12 and Health check with nurse, both went well. 9% chance of getting any old age things like blood pressure and heart problems. This is good as both parents suffered with both of these. Plus weight and life style type 2 Diabetus. My waist was good 27.5 " or 70cm as this it what they go by for ahead problems. So all OK I did not think there would be any problems. I have never bean a heavy weight even when pregnant. I weigh now 8stone eleven pounds with shoes and clothes on..

Rang Age UK as I am not going tomorrow they were not very happy but I feel like I need another week. The  seizures really take the stuffing out of me, and leaves me very week and of course more pain. The bruises and black eyes are a lot better now and beginning to go.

2nd

A frosty cold start to the day. Paul's friend  Lynne came round and brought sausage rolls these were very rich and later upset my IBS,

Making Barbie tent or trying to any way. This is out of pink fur and will have sleeping bags. Not going too well at the moment, so starting again. I could not work out how to fold the sleeping bags as they have a liner and are padded. I was told its BRAIN FOG. May be it was or just being a fool. I am going to restart tomorrow.

3rd

Tent going a lot better today. What ever it was yesterday causing the problems is going well today.
I got the tent just about all finished and think it looks pretty good.

4th

Machining today- towels, trousers and the sleeping bags. Worked out how to do them. Got them all done the Barbies will be warm now.


 Inside the tent ready for bed.
Husky will look after us- lights out -night night.

5th

Not a good day temperature wise, it's all over the place, mine that is not the weather. It has not bean this bad for a while. Sweating and cold over and over again so many times though out the day. Weather it's my body readjusting after  the seizures or what. I know its a nuisance, and one that RSD suffers have to put up with. Lot of knee pain as well the last few days. The left one with the tear. Hopefully soon it will be sorted out.

Loads of fireworks going off and Summer is not happy. She is not afraid of them but I think she wants to chase them.


6th
Made Christmas cake no 1, a sherry one this time, 3 to go. Not as many this year I am finding it harder each year to do them.


Had a quick few minutes sleep and woke and was not sure where I was or even if it was day or night as 6-20. I thought I had bean asleep downstairs and it was morning. Took me a few minutes to work it out. Paul was at football so I think that's what threw me as we would have bean having tea or washing up normally. I know it was a weird and unsettling feeling.


7th

Not at Pilate's this week next hopefully. IBS playing up big time first I can't go then I can't stop going. Stomach bloated and sore. Not feeling much like eating either. A lot of this is extra tablets I know. Take the tablets plays up the IBS don't take them extra PAIN. You can't win with RSD.

8th

In town today first time since the seizures. Got a lot of Christmas and Birthday presents. I felt tired but it was nice to be out apart from the common. Angela came round for Paul to sort out trains for her to go to York. This was soon done

9th

Phoned up Newark Hospital as instructed from letter to make sure they had my knee scan. A few minutes later they rung back and said I was booked in to a ANKLE AND FOOT SURGEON NOT A KNEE SURGEON. This is bad as know I have to wait for another appointment 5th Dec. Nothing seems to be going right to get to see someone about my knee, 6 weeks for the scan now this. I now need to go to Nottingham and not Newark this time. Lincoln is not taking on till next year as they are in shush a state. Well hopefully this will be going ahead unless they have booked me into a breast Clinic!!!

Age UK went well we were not crazy busy but steady I was pleased as it gave me chance to have a rest and a bit of a sit down. Everyone was pleased to see me back. Even some of the customers missed me.
A good day but tired when I got home.

Andrew got a free sofa bed for his room and him and Hannah plus Scott (Hannah friend) took it up the two flights of stairs. A lot of shoving and pushing, plus taking down all the video shelves they finally got it there. Well done all of you.  I did not think it would go up. The height of the ceiling used to be more, but we added another flight of stairs above, for 4th bedroom, which made the ceiling a lot lower so less room to move things. When we got a divan bed once it had to come in the bedroom window. Not easy when its the second story.

10th

 Made Christmas cake number 2 today with brandy added. The smell was so good.

12th

Cake number 3 done one more to go.

I tripped over the electric chair cable mid morning and pulled my shoulder and bad knee. I hurt for the rest of the day.

I got a phone call to say my Doctors appointment is now 11th of December instead of the 20th of November. First the Scan took six weeks to be sorted, then the wrong Doctor and clinic for my knee. Now my own Doctor messing me around. I am fed up of it all. Seven weeks from when I first made the Doctors appointment.

13th

Sorted out the greenhouse now the cucumbers and tomatoes have finished. Bean a good crop of cucumbers but not so the tomatoes.
.
Knee not too good today I don't think it will get any better till I get some treatment hopefully very soon.

14th

My friend Lyn here today as it was her Birthday yesterday. She said she would come here instead of me going there. That was very nice of her.

I went to Pilate's, Paul gave me a lift so it did not take too much out of me. I did struggle a bit though as it was. I felt very far away most the time.

Had a good chat with Lyn, I have know her nearly forty years , we met in hospital when having our first sons. She was in the opposite bed and her buzzer did not work so I  pressed mine instead. We have remained friends ever since.

15th

Out today for a change, meeting Jenny and Joy for dinner/lunch. A nice meal and god conversation too. and I enjoyed it. I had soup, home made chicken and veg, very tasty.
16th

Winter is truly here the leaves have nearly all gone making a carpet on the ground. Quite windy today and the leaves were falling like snow. 

 
 
 

 Age UK a  steady day with Polly back, so the kitchen on full force. I am very tired but I do enjoy my time there. Keron was also helping us doing the Cappuccinos and coffee drinks. This meant it did not have to be turned off. No shopping today as I have an eye test tomorrow, so will do it then while in town.

The last few weeks have not bean easy. RSD is like a horror ride with no chance of getting off.


Well I hope things are going better for you all. All the best Love Gill

October 2

15th October

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.

I watched a documentary about RSD on TV all about a lady burning from the inside. This happened to me but not on a big scale like hers. Worth watching It was called--- Body Bizarre on TLC 20th October.

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


 
  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.


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