July all ready the year is going so fast.

July 2nd

A windy but warm day. Summer has had a bath and looks very white, soft and fluffy. She needs a hair cut, in fact, we both do mine has not bean cut since April so getting long again.

I was flipping through a magazine and it said where's the pause button--- I would like to know, where's the START button.

The Children are back from their holidays with their Dad. All had a good time. When they got back to the Airport, the car would not start. This was early hours of the morning. Dad in the car with three children very tired and wanting to go home. The worst one moaning was the oldest Jay-Jay. Tommy-Lee and Jamie-Lee just played games and napped a bit. In the end they were towed back to Lincoln an expensive end to a holiday. Both Tommy-Lee and Jamie-Lee enjoyed there extra add on. They were all safe that's the main thing, but very tired.

I think I am getting a cold as sore throat and a weird headache. More tired than normal too. I know all the weird pain I get and people have said to me it must be hard to distinguish between them. No, because you just know-- hard to explain though.


Quite a nice day again warm on the common with a cool breeze.
I went in the fridge and thought I could smell gas I know very weird!!! Turned out to be some cooked cauliflower that had bean there too long one of Andrews cooking leftovers.

Going to Jamie-Lee's sports day at her school. Getting picked up but walking from Lindsay's house to her school close bye. This is the first proper outing since having my knee done.
The day was very good, all outside- I love seeing the children running around and having fun a very nice day for everyone taking part. When the prizes were given (This was inside the hall.) there were some parents that did not know when to shut up, and I think spoiled it for quite a few people that could not hear the Head Teacher talking. I think they need to go back to school themselves. VERY RUDE. The children were very good.
This affected me, as too many sounds from different sources made my head hurt and I felt shaky. Just as I was going to say to Lindsay I have to get out it was finished.


Another warm but dull day. Summer's walk on the common I did with just one crutch. So I was very pleased hurt a lot later. This whole recovery thing is taking far too long for me and I don't like it one bit. I thought by now I would be back doing everything I did before the operation after all it was not a big one. I know the RSD is messing things up BUT----- I will just have to wait a bit longer. I feel very far away maybe I should just stay there if its better than here.


Whoa- knee very painful, so is left hip and lower back. Dam that walk yesterday I thought I was ready to ditch one crutch shows it's not yet time, back to two tomorrow I think. I think the cold has a lot to it plus the RSD of course. Did some more of Lion rug only 17 more rows to go. Fingers are not good so I am finding it hard at the moment. In fact, a lot of things are getting harder to do.


Went to B and Q and got some bedding plants, loads very cheap end of the line about a third off. Putting them in tomorrow. Rained a bit so that will help them perk up a bit, they are still very nice plants and at that price too even better.

Tomatoes and cucumber have grown a lot--this warm cloudy weather is helping them along.
 Toms doing well.
 The little ones on either side have just bean put in.
 Runner beans doing really well.

Looking after smudge Andy's cat, for a few days. I reached for a fork off the draining board and knocked a dish off--- smash on the floor. I had only bean there five minutes. I did do the washing up and cleaned the sink for him, to say sorry. All the time I have bean feeding the cats I have never damaged anything. I was mad with myself.


Worked out where the plants were going, most in planters and a few to fill up the hanging baskets.
They look good even better soon when settled in. Six planters in all and four tubs. Pleased with myself.

Hanging baskets the snails had a go at these, before I put down the pellets. They will be alright though. They will recover in time.

I still feel not well if it's a cold its taking the long way round. Very sore throat and a bit of a cough now. Such a bad head too, the sort that if you bend forward it feels like your head will fall off. Anyway time to sit down, bath later that will help. After my bath cold started more-- runny nose and now gunky throat, eye sockets hurt, ears blocked and painful as well and cheeks hurt, maybe a sinus infection? YUCK.

Some more pictures from my garden.
                    Fuchsia was just a tiny one- and has grown a lot bigger than any of the others.

 This rose was also a tiny plant and just grown like the fuchsia.
This rose has a bud inside- not seen one like this before- strange.


Not a good day for me cold really getting to me.  Not very steady on my feet. Hit my head on the door frame got a bump now. Hot cold sweating shaking at times. Ears not as blocked, left one cleared with a blast of pain, the right one still blocked. The RSD is really making everything worse as you would expect it to do as its EVIL. 

Very heavy air as well which does not help anything, well at least things can only get better give it more time I am always being told, well time I have plenty of. Was hoping to be back doing everything by now but my plans never go as I would like.


Now back and left hip has joined in with the pain might as well there is not much left that does not hurt at the moment. Coughing up gunk still runny nose, not as runny eyes. Cold sore in my nose now.

Anyway, better stuff Happy Birthday Lindsay. They are all coming round tonight for tea-- nine or ten in all. Chinese, not cooking I would not be able to do it now.  

Summer is having her hair cut so she will look very sweet or should I say sweeter. Twenty Seven pounds now plus tip. Worth it as Summer feels very at ease with Maxine. More than she should as she still falls asleep before the end.
All got too much for her.

Lindsay came round with her tribe and in the end there was nine of us for tea. Paul bought the Chinese and it was very good. Got Lindsay a few bits and I am going to take her shopping when we both can. She is not well herself with her brain bleed still not sorted out and gives her a lot of problems.


Fifteen years of HELL today. Had RSD for fifteen years now. Separate blog already published.


Nice walk on the common not too warm and a breeze. Summer did not have her ball so just a little walk around at her pace.

Haircut for me today,  not the cost of Summer's though. Ten pounds with tip, comes to the house, which is a lot better for me. I at least look better now even if I don't feel it. 

Finished off doing the bedrooms I started yesterday, washed bedding and it dried well- sunny and windy perfect.


Woke around five-thirty to a violent headache. Went down and got some tablets and try to sleep a bit. Paul was already up as he had a hospital appointment.

Not feeling good either, voice very croaky I sound like Kermit the Frog. Hands are very shaky keep jumping pain as well. Resting this morning to see if that will help at all.

Lindsay came round later with Jamie-Lee as I said I would have her while she went to a meeting.
I said you will have to be good as I am not feeling well, I will she said and she was, ate all her tea with enough gravy for three people. She said my hair looked good.

We made swords this time, for her and friends, plus one for her dog Suey, why she wants a sword I don't know. 

Lindsay came back later and picked her up by now she was tired. I had a bath then relaxed a bit.


Summer's walk was a bit longer than usual as the horses were near the gate when we wanted to head home. So lucky for us there are a lot of ways off the common. We went through the fairground common. I was a bit worried that the horses would go that way and get to the gate before us as we were higher and could not see them. Lucky for us they stayed where they were. Summer is very scared of the horses.

Tied up the toms and cues which are growing at a fast rate which is good as they were late going in. Even the outdoor toms are doing well too. Quite warm in the greenhouse 110F I need to put up the shade- its an old window blind which does the job very well.

Started knitting a baby cardigan for my friend, a pretty pink one as she is having a girl. Not done much knitting for a while as hands not bean very good.


Dull start to the day bit of rain too. Very heavy air, storm later I do hope so I love a good storm, thunder, lighting all of it I enjoy.

I think my cold at last is letting go after nearly three weeks, still, a lot of tightness in my chest and throat is clogged up still coughing a lot but not as powerful.

Andrew is away this weekend at Brighton so I hope he has a good time.


Andrew back but very tired he bought me a bath bomb.

Did the ironing. Tied up the toms again and side shooted them. A snail had got within inches of the younger cue plant. Put down more snail pellets, was going to spray planters and greenhouse with garlic, but I read that on succulent plants its not good and can kill them- so its keep putting down the pellets.


Only used one crutch today but the pain later was so bad. I will try again tomorrow as I need to get back to how I was before the operation. I knew it would take a bit longer, but I never thought it would take this long.


Saw the swan and all her babies, there were two adult swans this time as last time (3rd June) only the Mum I would say, as its usually the Mum that looks after them more. Used one crutch will see later how it affects the knee for pain later.

Cleaned up downstairs, hot but I don't think as hot as yesterday.

Later watered the garden. Summer as usual was there waiting for her turn with the hose pipe. I leave it on the grass for a few minutes so she can play with it. I moved it for her and she picked it up in her mouth and sprayed me from top to toe. Quite nice but very cold I have to be careful as if I start shaking I know what's coming next-- the dreaded SEIZURES. Later on, she did the same to Andrew but he did get quite as wet. She has fun and cools off a bit so it's good. Could rain later but it will not matter as the ground drys up very fast.

I watched a program about a MENISCAL TEAR operation all went well, but afterwards the man started violently shaking. I remember shaking after the operation-- so that and the pain I think brought on the SEIZURES.

Pain around the knee was not as bad as yesterday so maybe I am making progress.


Yes there was a storm but it did not last long around 5am just as I was going to bed, I did not see any lighting (told later there was) but there was plenty of thunder and lots of rain. A lot of people are struggling with nighttime heat and of course the day time heat as well- could hit 100F/38C tomorrow then back to more normal British weather. People want the hot Summer heat, but then they can not cope with it. When I was younger I worked in greenhouses that would be 100%F in the winter, so maybe I am used to it. I have always bean a cooler person than hot anyway.

Went into the greenhouse and it was 120F/50C--- dropped a bit after I took it from the greenhouse.

 I think this is the hottest its bean in there, and that's with a shade I put up a few days ago.

The plants were wilting so had to water again. Going to fill up the paddling pool for Jamie-Lee as she and Lindsay are coming round. They got here before I could start. I put up a beach shelter and was very surprised how cool it was sitting in it.

Had a very nice day with Lindsay and Jamie-Lee she spent most of the day in the pool playing with dolls and anything else we could find that poured or floated. She had the garden parasol over her a lot of the time, so she did not get too hot or burnt. She did have sun lotion on of course.

 Very hot--- weather not me.

 A very nice day for everyone I think. I enjoyed it a lot but very hot in our garden South facing,

I had a shower what's wrong with that you might ask? Well, I don't usually have showers as the spray hurts most of the time. Even changing the flow and pressure has no effect as my skin is HYPERSENSITIVE. This time it was good lukewarm and very soft spray. Another time I would not get away with it.

Later that night I used the pool water for the plants took longer but at least it was not wasted. Also put up the hanging baskets they have recovered now and looking good, so is the garden and planters, a bit of rain soon makes things shoot up.


A very humid day even though the temperature has dropped, to me it feels worse. Thunderstorm heavy air I have earache and a bad head.

Put out washing, rained, brought it in sunshine- put out again- rain in- sunshine. You get the picture I think well after three times I gave up and put in on the aires. Well at least the weather has bean very good in the past, so I can't say a lot.


A very wet start to begin a lot of people will be pleased (or maybe not) as I know a lot struggled with the heat now they can moan about the wet.!!

Looking after Tabby cat for the week, not Mustard (Hamster) as he has gone to a friends. I called him Tabby and he came running from the garden (Ness has the biggest garden in the street) he purrs and sounds like he says hello to me. Gave him his food then left him in for a while, he will have a sleep and be in the same place I left him. I will see him later, I go round three times a day at least, stopping at night to stroke him and sit with him. When he is ready I let him out for the night some two hours later usually. I just sit with him no TV (not sure how to work it anyway when go round to look after Ben and Emmie its always on) Night Tabby see you tomorrow.


Tabby's doing fine, brushed him today, he is malting a lot, and a bit unsteady on his feet. So I don't have to brush him too hard or he will fall over. He is getting an old now boy now. I think he's round 14/15. So he is doing very well, still has a lovely coat, and I think he is a pretty cat. Cord jeans and a malting cat--- don't go too well together they get covered in hair.

Resting after his tea.


Happy Birthday, Wayne. Sorry we can not be there with you today. Hopefully I will go with Paul on Sunday. This depends on how I feel, and if I think I can cope with the journey. He lives in Halifax around two hours away at least.  

I went to Jenny's today last time we sat in the garden as carpets had bean cleaned. She has a lovely home a mixture of new and old very nice. Lots of orchid plants as well, which I love I have just one.

Bob her husband showed me his model trains. A big track and scenery. Some of the scenery is so tiny. A lot he makes himself, some bought. A very nice hobby for him and I love train sets too. I think this stems from having three brothers and being the only girl.


Lindsay and Jamie-Lee are here for a while, she is doing work on the computer for her football season starting this soon.

Jamie and I played with the dolls house most of the time. I took her to see Tabby and she was stroking him, and he loved it, purring like a train. We went back a second time to see him, again more fuss and purring. A lot of hair coming off him on to Jamie-Lee. She said I don't mind Nanny I love him and gave him kisses. 

B12 injection in the afternoon (2-40pm) this did not hurt to start with but just after it did a lot, very painful too. This lasted the rest of the day.

My friend John came round later and stayed quite a while. Nice to have a different conversation with Lindsay being there. He has not bean well, So it was nice to see him looking good again. He enjoys his time here.

Well, what can I say about this month then?--- not the best and more painful than many. I think I am on the up now. My knee is improving slowly. So hopefully next month will see a big difference.

Hope thing are going a bit better with you all. I would like any comments from you about the Blog or yourself. Just leave me a message and I will reply. Just click on the comment or emails bit at the end of the Blog . All the best to you all, Love Gill.

Fifteen years today-July 13th.

Well, fifteen years has gone by since this RSD plus all its friends invaded my life making it "Hell on Earth". I think back to when it happened. If I did not go running that night or had not doubled back for a friend. Would things have bean different? (I had already passed the bit where I fell, it was the second time round, that caused me to fall).. But there are not, so its up to me to make the best of it. Most people can not cope and end up in a wheelchair at some time because of the pain and the sheer pressure of it all. WHY am I not? I am no different to them, am I? I think I am a strong person and that helps a lot in this case. I did not want to be anywhere near a wheelchair just the thought of it scared me s**tless. I did need to use one for a while though when I was not able to walk the first few years because of the severe pain. I still do if things get really bad, plus my scooter. This I did not get for two years but pleased I did because it got me out more.

RSD is like nothing else--- to start with hardly anyone has heard of it-- even most Doctors, mine did do some research to treat me with more understanding. I have never yet met anyone with it apart from online. So you have no one to discuss your problems with, NO specialist- again, you are lucky if someone has even heard of it. When I have bean in hospital-- its the Pain Team I have to deal with. I am no a big fan of them. They always make things worse for me or is it I just do not want them. When I have SEIZURES, I have to stay put as I am not safe otherwise. No walking or moving around, mostly sedated. All this time the RSD is winning and gaining more control. Once that happens that's it, game over. That is not going to happen, that's if I can keep things together. In some references RSD is called the DEVIL CURSE not without reason. RSD is similar to MS in some ways but can be more painful.

I have had very bad dark days after the SEIZURES or illness-- when I think it would be so much easier to just lay down and give up. I have on many occasions looked back at my life that was perfect to me, well-- may be not that good, but a lot better than now. I could run, walk, have fun, go out when I wanted to, sleep, and have a life with friends.

Since the RSD this has all changed. Now I can not stand loud noises, vibrations, car journeys of more than say an hour, even then I have pain and are more like a ZOMBIE when I arrive because of extra tablets. Going on the bus can cause be to scream inside with pain. Ten minute journeys that's all I am talking about, that's all. Because of the vibrations, not everytime, but most and if I have bad pain this will be worse after for sure. This restricts me a lot-- no parties, crowds, pictures. I have bean a few times but had to pick a very good day. Even then the flashing lights and then noise from the speakers, its not good. but its the best I can do. A lot of times I have to shut my eyes. Angela thought a few times I was a sleep.

When watching Glastonbury there were loads of flashing (images). (Even that sort as well) this can make me feel very unwell. This is partly to do with the SEIZURES. Colds, knocks, normal every day things that do not bother non RSD person will make my life hell. I have a heavy cold at the moment. I have given up a lot but still have things I can do. I am still able to walk just some days, still on crutches from the knee operation but hopefully soon that will be changed. Bean a longer journey than I thought it would be. Knitting on good days, sewing when I can, puzzles, (but not with fire hopefully.) I can take Summer for her morning walk most of the time. Housework a bit hit and miss.  Looking after the Grandchildren, plus the children two doors away, and cat sitting. Typing this, my fingers are not good the feeling has gone and my brain keeps fogging up. I make a lot of mistakes so everything takes a lot longer. Things like this you all take for granted and just get on with it. For me very frustrating. People ask me out and are disappointed if I say no and after a while don't bother asking I try to explain but its not easy.  I have got fifteen years experience and still don't under stand it. Just wanting a big hug some days, but knowing this will hurt. Disability is another thing. PIPs say I am not disabled, an ongoing case at this moment. This is very frustrating

Running is what I miss the most just the sheer pleasure of it. If you have never run you will not really understand. Just think waking one day and everything you did the day before, work, pleasure, every thing just like that gone.Then add the PAIN and how would you feel???

In the beginning I had Wietse he was an Angel in disguise. He helped me so much and without him I know I would not be as good as I am now. He used to say it was me that was doing all the hard work not him. He showed me the right path for sure. A shoulder to cry on and someone who knew what RSD was. Thank you Weitse for all you did for me. (get in touch please)
I have had some treatments that helped somethings but made others worse. I think the cure if there is one, is a long way off so all I can do is just get on with it and keep moving.

Thank you all for reading this all the best love Gill. 

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