May 1st

Weird bloating feeling today. Probably a flare up of IBS, I have taken quite a few extra tablets.   Strange as Summer is ill as well as I said in my last post. Summer is about the same. Talking to Nicky on the common she said her dog had the same thing last week, this lasted around three to four days. The dog is Basil, Summers boy friend who she was nose to nose with, a few days ago. We say they are kissing as it just looks like they are. This must have bean where she picked up the bug or what ever it is. A few others I spoke to said their dogs had bean a bit loose as well but not really ill with it.  I will give Summer another day to see how she is before getting in touch with the vet. She is still eating well so I am not too worried about her.


Out with Joy today for a posh afternoon tea at Thomas 2 in town. I met her there. Joy has bean here before, and really liked it. My first time here, this is a thank you treat, for knitting the baby jackets for her niece's very soon due baby.

The tea was very good, sandwiches of choice I had chicken, pork pies, cakes plus a few other extra bits. All very filling we both waddled out of there. I walked home and Joy caught the bus. I did not eat for the rest of the day only having a banana earlier in the day.

Later the Lincoln City football team were going around Lincoln in an open top bus to celebrate their promotion to the football league. Well done Lincoln.

The Champions.


Pilate's on my bike I enjoy these rides, well mostly. Very windy and cold too. The session went quite well a lot of pain in shoulders and pins and needles in arms and hands. Spasms in my feet a lot of the time. I think this is caused by biking and my feet pressing on the peddles. My left foot does most of the work, right foot not having much feeling. I felt very tired and still more pain than usual when I got home, so did not do too much rest of day.


Another busy day at Age UK. Vera liked her hat and gloves I made her, I am going to make John her partner, the same in red variegated wool, I started knitting this yesterday.

Looking after Ben and Emmie two doors away tonight. Nes their Mum is being taken out by her mum and husband for her birthday. The children are usually very well behaved, so is not a hard job.
We did a lot of colouring and puzzles and after they both were in bed I did a bit of knitting. Soon Nes and family were home. I stayed a while talking then headed home for my bath.

Dry throat and bad head.


Sorting out all my plant pots and gardening things. Tidied up the garden a bit. Not feeling the best today. Throat very dry and red, cough too, hot as well.  


Went to Angela's on my bike she has bean asking me to come to her house for a while. Nice afternoon with her then home again to cook tea for me and Paul. Cold day again where has the warm weather gone its MAY not NOVEMBER.


Got Tommy-Lee here, he is off School with TONSILLITIS Jamie has got a cold so she here here too.. Lindsay is going to Sheffield today to see what's going on with her head pain. Paul is taking her and I have the little ones till she comes back.

I don't feel good today, a lot of pain, cough and very sore throat. I ache everywhere too.


The ever changing common. Since we have had a bit more sunshine and more light the trees have
changed so much in a few weeks.

HERBALS, a talk with them and catching up on how I have bean. They said I did not look too good.
They are still trying to help my sleep, or should I say lack of it. I said I think the only thing that will help me is--- if I am really ill again and it resets my body clock. Even that might not work as too much sleep can be bad as well. Hopefully this will not happen any way. The SEIZURES have stayed away since last August Bank Holiday. When I am ill, like the RSD flare up and this throat thing, I get a little worried as my body can only just cope with the stuff going on now.

They mentioned HEMP MILK that might help my sleep. Spoke to Andrew about it and he said he was not aware of it helping sleep. I will look into it. I have had a lot of TINCTURES and TONICS and TEAS plus BATH OILS. This can be so expensive. The tea is nice but the the TONICS did nothing for me. The BATH OIL very nice but no better than BADEDAS and at £12 a little bottle is expensive. I am going back in a few weeks to talk to them. I have ACCUE on Thursday hopefully they will help the Virus or whatever I have picked up. I feel very tired and hot and cold quite a bit of extra pain too.


I decided not to go to Pilate's today.  I don't think the bike ride would have done me much good.
I think I might have a VIRUS or something.

At least Summer is a lot better now and back to her PUP self.

ACCUE I cancelled the appointment and managed to get one for 25th May. This will most likely be the last one before their summer break.

Decided to go to see the Doctor just in case it's something that needs help like ANTIBIOTICS.

The Doctor said its an UPPER RESPIRATORY TRACT INFECTION this will get better, in time, on its own. I am pleased its no worse. Any worse or no improvement I am to get back in touch with her.
Hopefully I will soon feel better.

I am not at Age UK tomorrow. I rang Sam the volunteer's coordinator, to let her know. She asked me if I could give her another day when I would be available to work. I said only Friday, she said in an emergency I said it's still only Friday. I will not be able to cope with anymore.

People see me as I am, and think everything is well with me. Not everyone knows what I go through on a daily basic.


Resting as much as things will let me. Still feel not good but this hopefully will improve soon, throat not as sore now. Bad head and sore, tender lumps on head again. I think these are glands as they come up a lot. Bret the ACCUE student told me once what he thought it was, but I have forgotten what he said. More so when the RSD flares up or I get a virus or something, In other words something else to cope with.


On the common with Summer today and I saw a young deer, I have lived here around forty years and never seen one before. What a lovely sight. Also we saw a squirrel looking for food.

What a day for me cough, chest, sore headache, very dry throat and dizzy as well. This on top of RSD playing up I hurt everywhere. Right side being the worst-- hypersensitive too.

Tommy-Lee's football awards tonight as well. I could not cope with all the noise. I did get in touch with him to say I was not going to make it this year. All the best Tommy-Lee.


Not a lot of change PAIN bad shooting everywhere. Also very humid today this does not help much.

RSD is NOT a condition that you just sit back and rest, me anyway.  I have found just the opposite, try to move as much as you can. This helps the body from getting too stiff and sometimes relaxes it as well. Also stops the brain from focusing on pain.


First lot of  baby Moorhens I have seen this year.


My friend's here today, Bev from Beeston. We have not seen each other since February. She brought me some tulips and apple pies. So nice to see her. A lovely day just what I needed. Thank you Bev.

I think the pain is easing off a bit, cough not quite as bad. I have a lot of congestion today and my face hurts.

My friend Angela had a car accident today but she is alright. some one side swiped her. The car is a mess but apart from being very shook up she was not hurt. Very pale looking when she called in here but after some water and calm down talk she looked a lot better.


I am going to Age UK, but if I don't feel up to it I will leave early. The day did not go too bad, a lot of people asked how I was. A few said I still did not look well. Not as busy as some Fridays. I coped but felt dizzy at times and took too many tablets but whose counting?

Home for a rest as I am about all in, a cup of tea and a cuddle from Summer. she will be waiting to see what I have got her for a treat.
I got a nose spray and drops to put in my steamer to help the congestion. 


Arm bad, shooting pain from neck, collar bone area down to arm and fingers, these are numb a lot of the time but painful as well. Finger are numb at times. A lot of congestion in nose and throat. I used the steamer to try to help move it away. Helped a bit but needs more goes. Noses spray helped as well.


No improvement with my arm and shoulder. Does not matter what I do it still hurts a lot. One thing  RSD sufferers are used to is pain, but this never stops. The only way I can get a bit of relief from the pain is to hold my arm up in the air. This is good for a while then another pain begins. I just wish it would all go away. Too many tablets but what can you do when the pain just keeps getting worse.????


Dinner in town today with Joy she treated me she said I needed it.  Very nice too, a little Edwardian  Tea room called "Lady Rose's Edwardian Tea Room" with the waitress dressed as she would have bean in  Edwardian times. Even the tea was poured out for us, very posh. I had sandwiches and they came with crisps on the plate. When the waitress came back she asked if everything was alright. I mentioned about the crisps would be nicer in a bowl. The next order that was taken out Joy noticed the crisps were in a bowl. A bit later the Manger came and thanked me for the comment and from now on he said, crisps would be served the new way in a bowl. I said thank you.
Joy was quite worried about me and all my pain, she has not known me that long so is not used to seeing me like this. She will get used to it!!.  She is in quite a lot of pain herself, never really recovered after falling off the bus earlier in the year.

Chest and cough has improved a lot. At least that's one thing going right. Arm about the same.


Bad head pain today as well as the rest. The glands are up in my head again. I will ask at Accue tomorrow what Bret said they were.

No Pilates today not sure even if I would get there on my bike, and even if I did not sure what I could actually do.

I put some shading on the green house as it was getting too hot in there, Paul helped me.

I decide to take BECLOFEN this is a muscle relaxant, so I hope it helps a bit. I took this a few years ago. Once in Hospital for a long haul, they upped the dose from two a day to six. I said to them I think that too much in one go?-- No, the Doctor said you will be fine-- I wasn't--- I was paralyses for around twenty four to thirty hours. and it was very scary. The Doctors tried to tell me I had a massive spasm.!!!! So this is the first time I have taken them since then, only two a day.


ACCUE at last- I am so hoping this will help a bit. I saw Bret, Nansen, and Fanyi, the Tutor. They were a bit worried about the pain coming from my shoulder and neck. So they had to be careful where they put the needles, as there are lot of nerves around there. Fanyi sat in on the treatment giving his experience and knowledge. He said he thinks a lot of my extra pain is due to the virus. He has had a few people with the same thing. I asked Bret about the swellings in my head again and he said he thinks its to do with SINUS problems.
I had twenty needles in all. Two in each foot, one in each leg, two in each hand, one in each arm the rest in neck and head. I felt very shaky at times as my body strongly reacted to some of the needles. Afterwards they said, go into the cafe and sit down for a while. Brett said I can only imagine what pain you are in and its very hard for me to feel this. I said you would not want it at any cost. I wish I could give it to someone else for a while though. I did as I was told for once and had a cup of tea and sat for quite a while before I went on my way.

Jay-Jay here tonight as we are taking him to Cleethorpes tomorrow to join his family.


Going to Cleethorpes today to take Jay-Jay and spend the day there. Lindsay is on holiday for Bank  Holiday weekend with Ben and all the 6 children. The car will not take eight people, so we said we would have a day there and take him and bring him home on Monday then he will stay the night with us. A good day there, helped by a lot of pain killers. Jay-Jay joined his family. A very nice caravan too. We stopped a while then headed home.


I had an easy day as lack of sleep is really getting to me and I am exhausted all the time.
Neck and shoulders about the same. I do think BECLOFEN is helping. As the song says, "Things can only get better".


Today we are going to see Helen my past hairdresser in Derby I say past hairdresser as I have not had my hair cut since she left two years ago. We took her Birthday and Christmas presents, she liked everything. Her birthday was only last week so not as late as her Christmas ones. Caught up with all her news and told her all ours. A nice day with her.


Rain today and a bit colder as well. Arm shoulder a bit better today.

Lindsay and crew back from Cleethorpes, they all had a good time. Paul picked Jay-Jay up and while there had a game of pool with him. Jay-Jay is here for the night or may be two so that will be good. I like him being here as I can talk to him at night time.


Going to Pilates today on my bike of course, I know I won't be able to do all the moves but I will do my best. No problem getting there, checked bike battery before I went full power around twenty miles pedal so plenty. I use pedal assisted so even less battery needed. The class went well did hardly any arm work but all the rest. Quite pleased with myself, a few asked me how I was, including Jo (Teacher) as not bean for three weeks.

On the way home and even going the bike seemed a little sluggish, then it stopped dead so I had to pedal unassisted the last few miles home around five I think. Legs were aching by the time I got there
Lindsay and family were here well, two doors away at Nes's. With me being a bit late back because of bike, Nes let them go round there till I returned. I have put a new battery on my bike so I can see if other one has come to the end of its life.

Not a good month for me so hopefully the next will be better.
I know things would be better if I could sleep more, but that, I don't think will happen. My days are long. An average day will be twenty hours long, some twenty two hours. Exhaustion is obvious no one can get by on with that little sleep. Somehow my body seems to cope, JUST BARELY. But it's not a good or easy life as most people with RSD will know. Hopefully like I said, next month will be better. Hope you are having a better time than me.........all the best Love Gill.

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