June 2

June 17th

A quiet day, Lindsay came round for Dads day. We sat in the garden most of the time just talking. She was on her own so no children to interrupt. I hurt a lot today if only I could get more sleep I think that would help, but at the moment that's not possible if it ever will be. I nod off a few mins in my chair and it is only a few, mostly when the adverts are on. A lot of the time pain wakes me up even in the chair. Most nights I am awake a few times, even when I don't go to bed till four or five am.


A lot of shaking of my legs and body today, almost at breaking point I think. I worry when this happens as the seizures are never far away. I have taken as much pain medication as I dare and still the pain persists. Maybe tomorrow will be better.


Not at Pilates again I don't think my body would take it.  I have a ten mile round trip as well as an hour of moves. Hopefully next week.

I went into town to get Andrew something for his Birthday, did quite well I think, but its what he thinks. As what I like, is not always what  he likes.


Happy Birthday Andrew he liked everything I got him as well, so that's good.

 Andrew opening his presents Summer helping him.
 I wish it was my Birthday.

A little Pup I made for Andrew.

Joy is here for a visit. I have not seen her for a while so that was nice for both of us. I caught up with all her news as she has bean away for three weeks on holiday.

 Andrews friend Tank came round later. We had an Indian meal to celebrate Andrew's birthday, nice it was too.


Age UK only two in the kitchen today (usually four) so a bit hectic, not many waitresses either and we were very busy. No cappuccino machine either as there's not enough trained staff to work it .As you know I am not allowed to use it now.
Left knee is very painful and its quite hard to walk, but walk I have to, as buses make everything worse. Still too much pain but I think its going down a bit to my normal.

Lindsay came round after dinner without her tribe. She was pleased to have time on her own. Jay-Jay is having girlfriend  problems, Tommy-Lee getting into fights. They were with their Dad going to see Grandad Sid. Soon they came back and the peace was no more, well two of them did. Jay-Jay did not go to see his Grandad. He popped in later though.

Started making two very furry teddies for presents, these are quite hard as the fur is so thick.


I have managed to get an appointment with my own Doctor, Doctor Mehta. Its a waste of time going to other Doctors as I spend a lot of time explaining about the RSD. I go to others if it's non RSD related of course. I had found something on the internet that I thought related to the neck pain and tenderness I get. Dr Mehta agreed with what I had found. OCCIPITAL NEURALGIA. I have bean given tablets to see if they will help CARBAMAZEPINE 200mg, one a day. At last I have found a answer, this has bean going on nearly as long as my RSD. Shooting pains and tender spots on my head. The pain can strike if I turn my head or just when it wants. This can paralyse my neck and head for a while and is extremely painful.  Hope the tablets do some good. He looked at my knee and said it could be nerve pain.


Cleaning up in the morning, Lindsay, Paul and I set off to sort out a few items to finish off the kitchen and for bathroom. Lindsay wanted a lot of DIY bits for her bathroom, the children are away with their Dad in Spain so a good chance to get things done hopefully.

I had to come out of the store as I could not cope with the heat and noise in there. I felt like I was going to explode, very dizzy as well. My body does not do too well with heat changes so it panicked. I think the new tablets had a bit to do with it as well. All was not lost as Lindsay got what she wanted.

Early hours of the morning bad stomach pains, then I was violently sick so much I wee'd  my PJ'S. My stomach felt a lot better after but still dizzy feeling and far away. Was it the new tablets?


No Pilate's again, I was hoping to go today but I think my knee is still not up to it. Went shopping instead and this time got most of what we wanted. The stores we went in were cooler than yesterdays ones so I was able to cope alright.


Age UK again. Jenny not here so working with the boss. This was a bit weird to start with as she was the one I had dealing with over the tablets. Things were OK and she made mistakes on the till so she is human after all. A good day busy but not manic.Very warm like it has been all week so I think that kept a few away.


Blue sky not a cloud at all, this stopped like it all day very warm again.

Paul and I are sorting out a big cupboard that we keep just about everything in from cups and plates to shower gel, to Summer food and treats. This holds an awful lot, we put in the new things we had bought, saucepans, plates and bowls. All the other are goings to Lindsay as still all good. We are swapping grills as ours beeps. Summer does not like it, getting very upset. Lindsay's does not beep.

Well not as good this month, but not the worst, bit scary with the shaking but the seizures stayed away. Hope things are good with you all and you are enjoying the British weather that is if you live here. All the best love Gill

June 1

Well here we are in Flaming June but its not that warm.

June 1st

Age UK hardly any staff today, the kitchen only had two, two on the counter and two waitresses. Plus Vera and John not too sure if they were of much help Vera was missing most of the time.
Very busy too the capochino machine had to be turned off as no one to work it. A lot of disappointed customers.


Quite cold on the common and rain. Pup and I got quite wet. Wheres the Summer gone?

BBQ today at one of Paul's friends house. Very good too, the sun was out and it was quite warm. Very heavy though this affected me a lot, head ache and body pain. Just about when we were all thinking of going the sky blacken and the rain came down like a monsoon. We sheltered until the worst had gone then made a dash for the car.

 This was just before it rained, me front left Paul front right.


Phone call with Doctor Hindocha--- I asked him if I could reduce the TARGINACT from 20mg in the morning to ten. He said fifteen would be better and he would do a PRESCRIPTION for me.
I also said I had some information about the shooting pain in my neck, head and eye and the tenderness on my scalp. He said he would discuss it with me at my next appointment. I am to have a full blood test as well. My appointment is not till July 4th so by then I would have tried the reduced tablets (Hopefully) and had blood results back.


Funeral of my friend Miriam. Angela picked me up and I did not need to ask her how she was. I think we both felt the same. A lot of people were there and I think she would have liked the service. Not a lot was known about her as she liked it that way. Rest in peace Miriam.

We started the kitchen tiling today going quite well but I think this is the easier bit.

Be for we started with all the paper off.

Going well !!!

Paul tripped the electric trip switch, and all the power went off. The TV was not on at the time but after refused to come back on later, a bit like last time.The TV still had the stand by light on this time. I went on to the Internet and found affix hopefully.


No Pilate's, not up to it yet. Bit more of the kitchen done getting more work cutting and shaping the tiles.

Sorted out the TV, was quite surprised when it started working took a few goes but got it in the end. After reading the information, this is quite common with Sharp TVs. This will most likely happen again if turned off, or a power cut.

Joints are bad today I ache all over. Sitting is not good today at all and I am exhausted too. Not from the kitchen but lack of sleep and proper rest.


Blood test this went fine, sometimes the Nurse has trouble getting any blood as my veins are hidden and very thin.

Red cheek again and pain, the red cheek seems to act like a warning of things to come as I often have more pain when my cheek glows. This feels like sunburn. Only the right one goes red. This is what I need to discuss with my Doctor next month.

Kitchen not going as well but still moving forward.


Age UK busy again- three in the kitchen they can cope with three, four is better but three manageable. Lots of customers today and they stayed later as well. We are being thanked from Age UK for all our hard work, with a Tea Party for all the Volunteers. Lots of different cakes and tea. Very good too plus a Quiz and a singing key board player. A good afternoon enjoyed by most I think. The singer was not too good but I have heard worse.

Looked after Ben and Emmie from 7-00pm. They were good but Emmie is very energetic and had me running around after her. Ben was mostly in his room but did come down for food.. A good night to finish off a good day. Squidge came home around eleven thirty.


Kitchen still going quite well now, the wall are not true so a bit of extra effort is needed. Looking good as well

Sun shine today, hope it shines on my little tomatoes they could do with a little help.

 Cucumber plants
 Toms  planted out you can hardly see them.
 Cherry toms hopefully!


Finished tiling the kitchen now just the grouting and paintings of the wood work. Looks good but has bean a lot of hard work. This will now hopefully last for the next twenty years or so. The bathroom was done twenty five years ago when Andrew was only four. This still looks good.


Summer decide to drink Andrews smoothie. He put it on the floor and dipped his finger in to give Summer a taste and she went straight for the jug and started slurping it. She liked it and had a fair bit, would have had more if she was not stopped.

Getting her nose right in.


All the grouting is done now and painting now the big clean up dust everywhere. Washing down the cupboards and walls.  Chinese for tea. Soon the Kitchen will be back to normal and I can get back to cooking meals again, Chinese is nice though.


 All done well pleased with the end result. (At last we can have a clean house now.)


Age UK today we have a 60th Age UK birthday Party- for 132 guests for a three course meal.


 Some of the salmon ready for the guests. 
Soup or salmon, beef dinner or quiche, chocolate tart with cream or Eaton mess plus wine or orange juice. All served by us Volunteers and a group of Air force men from RAF Waddington camp, not far away. They helped a lot and we all appreciated them being here. The old people seemed to be enjoying themselves. There were Choir singers, and a group called, No Direction--  The the oldest Boy Band or that's what they say anyway .Good singers too. The music got a bit loud and was causing me a lot of pain, as  most of the work was now done, I said my good byes and left. I still had to walk home too, I could have gone on the bus but my body hurt enough as it was the vibrations would have made it worse..

A good day but I am very tired. I did go into Age UK on Tuesday to help as they were short staffed again. 

When I got home Paul had done the wall papering in the back hall way. This is where Summer eats her food and has her water dish. Pictures next time when its finished.


Spring cleaning down stairs to get rid of the dust from doing the kitchen. I started in the bathroom and Paul in the dining room. I scrubbed both the bathroom and kitchen floor. Summer came along and sat on my knee while I scrubbed  and went to sleep- this made things a bit difficult.

So relaxed she fell asleep.

She does not like change and will be pleased now its all done. Not told her yet that the bathroom grouting is getting renewed soon. This will not be too bad as Paul can work in there and shut the door. Hopefully all the mess and dust will stay in there.

 The common, with more Buttercups come out and of course Summer in on the picture too.


 Hope you are all well as you can be, all the best Love Gill.

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