14th July

Today has bean so hard as I have bean sorting out my little dog Sandys things. Its a job I have put off doing but where they are kept was also hard seeing them every day. I am still feeling so lost. I am thinking about getting another dog later on in the year. Am I wrong to try to replace her?

Later on in the day I knocked my right shoulder (RSD side) on the door frame my balance is not always good. I did not think too much about it till later on, when I looked it had taken all the skin off and was very red.

Not a good night a lot of spasms and pain. I think is is because I knocked my shoulder and the nerves have picked up on it. The pain seemed to be all the right side. Not much sleep. But on a good note I think my ribs are on the mend.


Physio at last. Wietse is now back and is his usual self. I told him about the extra pain I have bean having. The extreme temperature changes that seemed to have got worse and longer lasting. He also asked me about Sandy I said I was totally lost with out her. He said that would not have helped the RSD much.
He did usual needles I hope this will improve things as I now know that the acupuncture works as when I don't have it I am worse. I asked him about when I could think about running again he said give it a few more weeks as my ribs went though a lot. He thinks my balance is due to me walking different, more straighter so my center of balance is off till my body gets used to the change again. I think he could be right. As I am walking a lot better than I was.


Tonight Paul and I are attending the running clubs BBQ, two of my running friends are hosting it at there house. The night does not look too promising with the weather but we can only hope it does not rain. The food was good especially the cakes.
One of the members Tim is doing a seventy mile run while juggling balls for RSPCA charity. We all wish him good luck and we sponsored him. He was practicing but I think had a few too many beers and kept dropping things he also juggled with knives, very impressive.
The night was a good one and did not rain. So thank you Ross and Paul.


I helped Paul re-felt the shed some thing he has bean putting off. The day is very hot. First we had to scrape off the old felt which he had stuck on with LOTS of adhesive it took a lot of getting off. Paul and I then put on the new felt, I had to be care not to over reach and upset my ribs again. A few hours later and the job was done.

My shoulder looks like it has bean grated with a metal cheese grater its very swollen and red. There is lot of yellow pus coming out probably infected. I will not go to the doctors now but will wait to see if it gets better on its own less antibiotics the better. The pain is worse that it was. I have keep redressed it as the blood keeps coming though.


I am out today with my next door neighbour she is taking me to a cinama at Woohall Spa, about a hour traveling. Kinema in the woods, as it is called for Down Memory Lane a look back at the 40s, 50s and bygone years. We saw very old clips of bygone stars/actors some I did know you they were, some from war time actors and singers. We had a sing along to the song.

An organ came up out of the stage, a Compton one, it was amazing. He played very well, my Dad used to play most types of organ or panio plus other thing. so as I grew up there was always music of one type in our house. I enjoyed it a lot. After it was at an end we went for tea and cakes, homemade, they they were very good. We were full so we started for home.
It was a lovely day out a nice surprise. thank you Cilla.

Physio usual needles some of them hurt more that usual. I told him about the intense burning I have bean getting in my legs mostly, its bean worse the last few nights. I put my foot out of bed only for it to get very cold and go into spasms and wake me up. He said I am afraid thats RSD.
I feel very stiff and have a lot of joint pain but I think that to do the travel yesterday and sitting for the bygone film.


My daughter and the boys are here for the day. Andrew and I bought them a pirate set each so they are having great fun play at pirates. Walking the plank and sailing in a pretend ship and sword fighting. The day is hot again. A few hours later two tired boys and one tired nanny. They head off home leaving me in peace.


Another rough night with spasms and burning. Maybe over did it yesterday as doing a lot of sorting out and felt very tired when I went to bed but no better sleep, worse.
I am in town today on my scooter for the first time since I cracked my ribs as was advised not to go on it till better. All the children are off school so its very busy. I got want I needed so I was pleased. The scooter did not upset the ribs too much so they must be just about better. My shoulder is a lot better and now looks good and not infected but still sore I have to be careful I don't knock it again.


I have bean busy sorting out more cupboards we are going to have a carboot, hopefuly next month. We have a lot of things that have bean stored, so now is the time to get rid of them.
Later in the evening I am having of lot of pain in my joints. Most of it is my RSD side but some is on my other side. The pain is very deep and how ever much I try to get in a comfortable postion I cannot. I have my bath to see if that will help. Bed at four am. I try to get comfortable about an hour later I fall asleep.


At doctors as I need to see him as I think I have an infection in my leg where I got bitten by a Bug. He looked at the bite and told me it was a nasty infection. He has put me on ERYTHROMYCIN 250mg four times a day. If things dont improve I am to go back as there is a risk of septicemia. Its all ways the RSD side that gets things wrong with it. I told him about the pain in my joints/muscles. He thinks its the Fibromlgia is playing up. The RSD was not too bad but is picking up on the extra pain. I had hoped to reduce my pain relief this month but we both agreed that is not a good idea.


Wietse did his usual needles he put in a few extras ones to see if it will help my other pain in my joints. I told him about the temperature changes that have not improved at all.

In the afternoon Jordon (Katie Price) was in town so I went and got a book signed for my son Wayne for his Birthday. I was able to go in at the front of the queue as being disabled. I still had to stand in line the same as every one else but not for as long. Some people had bean standing there since 4am. She was not expected to arrive till 5pm. A lot of people were getting very exectied and I got pushed a few times and was scared I was going to get knocked down.I felt very shaky and dizzy.

My time came to go in. I was taken in side where I sat down and was given a drink, I soon felt a lot better. It was worth it as Wayne was very pleased if not a little shocked. With my books signed (I got one as well). And a very quick view of Jordon. I was on my way home I felt drained and in pain but it was worth it.

My doctor and Wietse says it will be alright to start running again as my ribs are healed now. So that is the best news that I have had for a while.

I was always told that there is gold at the end of the rainbow may be there is .
May be things will start to look up at last.

I hope your world is stable at the moment and your health is as good as it can be.

Take care Love Gill.

Trails and Trials

20th July

Today I am at a run that Lincoln and District have put on for the first time with the help of LA fttness club. Trails of the river bank, a run along the river to Bardney, traffic free. A choice of either nine mile or eighteen mile, I did the longer one two years ago on my bike for the MS center to raise funds for them. I suggested it to Martyn and he put it on this year. Even though it was my idea I could not take part as ribs have not yet healed enough yet. I was disappointed as I was looking forward to it. I would have done it on my bike, but thers always next year.
The day started off quite cold but soon warmed up. The runners certainly looked hot but the ones I talked to seamed to enjoy it very much. I was on the drinks station at the end,which I just about managed to do.

I enjoyed the day very much but would have enjoyed it more if I had bean taking part
in the race.


Today is my youngest son Andrews birthday he is twenty two years old, where have all the years gone. I am sure the happier time were when my children were little, things seam to be more fun and easier then.


I am cleaning up for the first time my self since I hurt my ribs I can use the vacuum one handed but its still quite sore. I stood in front of the bathroom and looked at my chest when I breathe in my bad side drops down and goes in, when I breathe in and out deeply it clicks and jumps back again.


Today Andrew goes to Amsterdam for a few days I shall miss him. His flight was delayed. He rang and said he was there and the hotel was basic but nice and it was very hot the same sort of weather as we are having at the moment.

One of my friends called unexpectedly with her little granddaughter of nine months.
We went to the park. We just sat and talked of what had bean going on, it was lovely to see them both as we don't get to see each other much for various reasons.


Wietse physio he did usual needles we talked about Sandy I said I am not copping with her gone. He said he knew how I felt as he also had lost a pet. I am to try to remain strong it will get easier as time goes by I hope.


Wayne my other son is here for a few days, to transfer the data from one computer to another as we have a new one. Paul and I would not know where to start. Andrew could have done it but Wayne volunteered, also we got to see him again, which is very good.


Today my ribs hurt when I move my arms, my joints hurt, also temperature is up and down I feel quite tired. My foot is swollen and painful I think the heat has a lot to do with this. I have realised that RSD does not like heat from the sun it has the same affect as ice I had the misfortune to get sunburn on my RSD foot it was very bad for quite a few days. Wayne is going home today Paul and I are taking him to the train station at Newark as getting a train from there instead of Lincoln as it gives him a longer time here. Andrew arrived back about midnight so he was very tired. He still has work tomorrow.


Today I feel very down I spend a lot of time on my own that's not always good. I feel lost with out Sandy I keep thinking I hear her walking along her name tag used to make a noise. I miss her so much. So many places I go remind me of her, people ask me where she is and are up set when I tell them, as a lot of people knew her right back to Andrews junior school days. We did have her for sixteen years. If I was able to run it might have helped.Michelle phoned today and said Wietse is ill so no physio this week that's a shame as Wietse would have done me a lot of good with his talking.

As you can see it has bean quite a hard time but things can only get better can't they?

Take care Love Gill


1st July

I am in town today, I don't really feel that good, very tired and still in pain from my ribs, but am fed up of being in all the time and not being able to do much. I am a outdoor person and feel like a caged animal when not able to get out. I am sat on the bus, on looking forward I notice the bus is very close to the car in front, then crash, smashing the back window and throwing most people including me forward, lucky for me I had my arm round my ribs I travel like this as it helps with the bumps at the moment, even so the pain was bad. The driver of the bus asked if everyone was all right. Everyone involved was ok luckily. I told him about my ribs, he said are you sure you have done no more damage. I told him I was all right, the pain would go hopefully very soon. I went on to do my shopping but was not in town long. I seamed to be very unlucky with getting things to make my ribs worse. Later on that night I ached and felt very sore.


No physio today Wietse is ill. My friend Russ came round and I went with him to a sort of coffee morning come question time about any help from the National Health Service (NHS) and general help. I met a lot of nice people there. I did not really learn a lot though but it was different.


Today Paul and I went to a local car boot sale it was a sunny warm, if not windy, day. The walking caused me a lot of pain. My ribs are very tight at the back. I have taken a lot of extra tablets. Most people it would make sleep but for me the opposite seems to be the case.


Docs today. He has reduced GABAPENTIN by 100mgs in the morning. I wanted to reduce more but he said not too much at a time. I suppose he is right as I still need strong pain relief for my ribs as well. Like Wietse says, little steps. It seems just lately that all it has bean little steps. Next time he will review the tablets.


Today my grandson Jay-Jay is representing his school in a sports day at a near by junior school. I am going with my daughter to watch. They did various games like bean bag throwing and running races the day was very hot. They all did very well. Jay-Jays team came second out of four teams so, they were proud of there effort. On the way home I got him and his brother Tommy-Lee a ice cream which they enjoyed very much. Later on that afternoon I had my VITAMIN B12 injection, this one was not too painful and did not hurt too long, about two hours.


Today is my daughters birthday I am at the dentist for a check up so we (Paul, Andrew and me) are going later to see her. She was pleased with her presents and homemade cake, most of it was money which is always useful. Jay-Jay and Tommy-Lee were very excited as usual.


RSD Anniversary

Today six years ago is the day I fell and got this dreaded disease I say dreaded its not really because no one really knows about it. What I did not know how my life would now change for the worst. Six years on and what have I learnt.

My whole life did change what I could do be for now most I can not or, in a different, not as good way, running was finished but now I've managed to slowly start again, so was my independence my life felt like it was no good. I can not where the same shoes, or in the earlier days socks as I used to.

PAIN PAIN and more PAIN and lots of it many different types non relenting.
The mountains of tablets I needed to take.
The side affects of the tablets which I get more tablets for.
I am on less that I used to be but I will not be happy till most have gone.
Sensitivity is very bad at times, the slightest touch can set things of in a very bad way even putting me in hospital. The severe muscles spasm's that can be full body, happen more than I would like them too.Virus and illness that takes longer to get rid of.
All the extra things I have got through RSD like Fibromyalgia, Osteoporosis, Insomnia, Chronic Fatigue to name some.

I need to be strong. Most doctors have never treated or heard of it. I was lucky being diagnosed if you can call it that very soon (about four months). I was unlucky to get Pain clinic as all they seamed to want you to do is take more tablets. It was not all bad they tried various treatments most very painful. I no longer go but when I was in hospital recently they wanted me to start going again.

I have learnt people think because you look well you feel well, most of the time that is not true I look better at the moment as I have a good sun tan. A lot of people can not cope with my pain and me not being able to not do the same things as before, and no longer come round
I have lost a lot of friends with not going to the running club, some keep in touch.

I have learnt I am very much on my own. I don't think they will be be a cure anytime soon, there is not enough research done. RSD is different for many people some get all or most of the symptoms, others hardly any. I have learnt that pain else where in the body usually starts the RSD up in my foot.

Ice is a no-no on me as is getting sun burnt. I have also learnt that my pain can be controlled when not extreme by listening to music. I can hide the pain from most people if I want to. I get my hopes up at a new treatment only for it to fail. If I find any new information I look into with great expectation.

RSD can spread. My RSD has spread most of my right side is affected in some way.RSD must be the most strangest thing to get as how can cold be hot and vice versa but it can be. Half my body or half a leg can be cold the other half red hot. Very cold weather makes it worse but also very hot does. The temperature changes are unreal going from sweating hot to shaking cold in a blink of a eye.

The only person to help me the most is ME. I have properly got the best physio ever He is much more to me than that, he helps me a lot by just talking and seeing things in a better light when they look hope less. I have learnt not to give up even though I have in the past. RSD and 'the change' do not get on. What tablets and treatment work for me might not help some one else with the same symptoms

I can not play with my grandchildren as I wanted to I had visions of me taking them to the park or in town but most days I am unable to on my own. This gets me a lot as I was very active always running or walking everywhere, people would say when are you going to slow down. Things I took for granted every day tasks can be so hard. What got me is that if it happened to some one less active they would hardly notice.

I try to pass on anything I think will help any one.
I hope I have helped a lot of people with my blog as it can be very hard to write.

Till next time.
Love Gill.

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