17th feb

The last few days I have ached a lot. I think its because of all the walking I did at The Deep. That's the problem - one good day out will make me suffer for a few days. The day was very good and Jay-Jay and Tommy-Lee loved it.

Physio- Wietse did acue in my neck and shoulders. One needle seem to hit a nerve sending pain right down to my RSD foot, which was soon awake and complaining bitterly. One of the needle's in my ear caused it to bleed a lot. It was not my day for things going well and pain-free. Wietse said it was alright to go to pilates as my shoulder had improved but not to push it too far.

Later on pilates went alright but my shoulder was still very stiff.


A friend came today to bringing me a late birthday present, a teddy called Spencer (I live on Spencer Street). It was nice to see her as I don't see her much. We sat and talked and caught up. It was a nice afternoon

Spencer and a friend chilling.

Sandy my little dog has not bean too well, so a trip to the Vet's was needed. After an examination I was told she has a small tumour/growth in her womb, it is probably infected so he has put her on antibiotic's for eight days. We are then to go back, to see if there is any improvement. I do hope so she is my little friend. (ONLY friend most of the time)

Sandy - my little babe.


Today I have got Jay-Jay and Tommy-Lee as Lindsay does not feel too well. I don't really feel that good myself. I feel very cold, and my foot is purple swollen and ice cold. I am getting pins and needles in my legs, more the RSD one, this is something I have not had for a while so must mention it to Wietse. Jay-Jay and Tommy-Lee were both very good, eating all there dinner and behaving so I could rest as much as possible. I always enjoy them coming but it is so tiring.



I am in town today on my scooter. A cold feeling all over my body (different to normal). The pins and needles are still there in my legs. My head feels like it could explode any minute, with pain across the forehead. My chest is tight and does not feel good, and I have a cough, but not a cough that does any good. My joints are so tender. What is going on now? Something is not right. Done at last in town - home to rest. I feel very tired but sleep will not come.


Its physio day - Wietse asked me how I felt I said like I had bean hit around the head and body with a baseball bat. That good he said I acutely looked worse than that. I am usually very cold to touch but today I am hot even my core is hot (my stomach). Wietse said this can only mean one thing you have an infection I agreed with him. Doctors tomorrow. He did usual acue and massaged my neck which is so painful he thinks the nerves are inflamed that's why it is so tender to touch. I have taken extra painkillers and muscle relaxants, but as yet have to work.


Doctors today I still feel bad, sweating a lot but still cold and hot. I am sat in the waiting room to see the Doctor I am very light headed and still hurt in most places. My name is called and I stand up, and walk towards the doctors room. The next thing I know is there are faces looking down at me I have passed out and am laid on the floor. I hit my head as I went down. I am helped to the exam room where I am checked over. Wietse was right I have a chest infection.( given antibiotic's). When I was fully round I said to the doctor fainting usually gets you seen first but it was my turn. My son was phoned as I still felt light headed( lucky he had a day off) to walk with me home to rest.


I have a bump on my head and my eye is slighty black, and a bruise on my hip. My RSD has got up to full strength as it has bean upset as you know it does not like it. My foot is very sensitive to the slightest touch and hurts a lot. I have a head ache as well. The antibiotics should start to work very soon so I should feel a lot better, I hope so I can't feel much worse. My eye is looking like it is infected as well.

On a good note my Birthday present, off my oldest son has arrived six audio books mostly horror or mystery. I will enjoy them. I don't know if any of you have audio books but they are very good, if you can not read for any reason like me a lot of the time the words go into waves and start dancing be for my eyes, so it is impossible to read a lot of the time, well worth getting as the range is so big.

Well that's it for this blog, another month gone I don't really know if that good or bad.
Take care every one,
Love Gill.

A Letter To People Without Chronic Pain

This was found on a forum on the internet and thought it may help some people.

A Letter To People Without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.



1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.


This moved me and my family - its just how I feel. Maybe you do too...
Love Gill.


14th February

Today we Paul, Andrew, Lindsay, Jay-Jay and Tommy-Lee (and me of course) are going to The Deep(a sealife centre), in Hull. I have not bean be for, so I hope it will be as good as everybody says it is. The journey took about an hour and a half. The drive there was good, not too much pain but very stiff on getting out the car though. As we arrived the weather was cold and damp.

WOW, what are we going to see Nanny, sharks real sharks?

We all went in side, and started to go round, some of the fish tanks were very large and the colours were brilliant. We saw some small sharks. Jay-Jay and Tommy-Lee were quite for once, but not for long.

After a while of walking and looking it was time for some food. The cafe was packed so we had quite a wait, not good with two young ones that were convinced they were dying of hunger. After eating we started on the viewing once again. Some of the fish were almost unreal - the colours and patterns were amazing. By now I had walked too far and was in pain despite the pain killers I'd taken earlier. There was plenty to see, if not a little far apart.

After looking at every thing possible plus going in the gift shop where I bought a fish crystal and some fridge magnets. My daughter bought things for her two boys also.

Jay-Jay very tired at the end of a most enjoyable day.

Tommy-Lee - "I am not coming out the sharks might still get me... also very tired"

We set off out side once again, the young boys were very tired. I ached so much but I think it was worth it. On the way home Tommy-Lee was soon asleep and remained so until we arrived home. I was pleased to be home for a nice sit down as I was exhausted. A very nice day had by all I think.

I hope you enjoyed the pictures.
Love Gill

Run and dislocate continued

Tommy-Lee and Jay-Jay having fun


Physio - Wietse put in the usual needles shoulders,neck,head and ears. I told him about my shoulder he said he would have a look after the acue. We talked about the past week I told him I felt like I did not have a purpose any more and did not fit any where. He told me I did Michelle agreed. I am quite down this week. I was let down twice once, for going for a run,the other for a bike ride. I know I probably was over reacting but I look forward to any thing different from the same routine of pain and tiredness. Wietse said I can go out for a SMALL run on my own now, as long as I take my mobile with me and keep to populated places, but be sensible I was pleased. Progress at last?

After the needles were taken out Wietse began with the massage, boy did it hurt he said my shoulder was still unstable and advised me not to go to Pilate's After a rest I made my way to the bus still in a lot of pain. Once on the bus I settled down, most of the journeys are painful this one more so. As I traveled on the bus, it came to a sudden stop sending me in to the seat in front bashing my shoulder, it felt like it had bean broken the pain was so bad. The driver asked if every body was alright. I could not speak because of the pain I sat very quite for the rest of the short journey about ten minutes. When I got off the bus I asked the driver what happened he said some idiot pulled straight out in front of him, if he had not stopped like he did, he would have hit him, and it would probably bean a lot worse. I told him about my shoulder he said sorry, but they was nothing he could have done other than what he did I said it was OK, it was not his fault and I would see him next week.


To day I had two visitors my Birthday is tomorrow. They brought cards and presents it was so nice to see them. We talked about all sorts of things. The day was good it lifted my spirits a lot it is so nice not having to spend the day on my own, as usual.

Happy Birthday to me.

One of the boxes of chocolates I got. I actually passed them round to share hard to believe I know, but true all the same. They only got one each.


Today is the big day I am fifty five years old. A lot of people say I don't look it but boy do I feel it. Six years ago be for RSD I would have agreed with them but not now. I got lots of presents flowers, a plant, chocolates a digital picture key ring, hand/ foot cream, a pill box, sweets, money, grow a sea monkey set from my grandchildren they thought I would like it as Jay-Jay the oldest one wants one for him self I am sure I will like it. I got flowers from Andrews(my son) bosses as well, most unexpected, and a lovely thought. I still have two presents to come. The day was very good and special, if not very tiring as my daughter and grandchildren spent most of the day with me.
Big decision
Only one

Do I have to share

All my lovely presents and cards

Tomorrow we are going for a day out more on that later.
Well bye for now see you all very soon. Lots of love Gill

Run and dislocate

2nd February

Today was different from every other day. I went for a RUN yes a RUN well its not like I used to run but alas I did run. I went with my daughter, Lindsay, off road down along the river banks. Most people will not really know how good it felt as they are not runners themselves. We only went just over a mile but it was so enjoyable. The weather was cold and wet but that did not matter it was heaven to me. I did not ever think I would be able to do this again. Like I said in my last blog some people think I am stupid even trying to get back to any sort of sport. I don't agree. Running has always bean my release from every day life and I really miss it. Once I was asked when I would stop running (This was be for the fall that started the RSD) I said when I don't enjoy it. Fate had different ideas. You never know what you can achieve if you really want it so bad.


About 3AM
We have two cats that have taken over the shed lovely cats from two doors away. I went in to the shed to lock it and to put the cats out, Ginge was holding his head on one side and was falling over. I picked him up and cuddled him as he seemed to be in pain. I put him down and he fell over again. I thought he had suffered a stroke so I held him again for about twenty minutes. It was cold and I was shivering and shaking and crying at the same time convinced he was dieing.

I shouted Andrew, lucky he was still awake and he came and looked at him not convinced it was a stroke. We left him in the shed with his brother hoping for the best. The next day he was no better but trying to walk Again I left him in the shed, but later he had gone, home I hoped. I put a note though Ness' (the cats owner) door to tell her what had happen. When she saw him she thought the same as I had - a stroke. After a vets visit he was diagnosed as having a really bad middle ear infection, after a steroid injection and bean given antibiotics the vet said he would be alright in a few days. I was so pleased.

My running yesterday seams to have done no harm and I don't ache any more than usual.

Pilate's today I got lift to the meeting place where I wait for Joanne it was snowing very fast, big flakes. I hoped she would be on time as it was very cold. As I waited with John the snow got heaver and thicker. John got a text message saying that she had got held up in traffic and would be a while.

So we waited getting colder and colder, at last Joanne came we were on are way the snow was coming down very fast, so fast she was having trouble seeing to drive. At last we got there and the class started, we did the various exercises. When I did the one where you lay on your side and glide your arms from side to side (arm openings) my shoulder locked up and I could not move it. The pain was tremendous. I dare not move. Joanne came across and asked me what was wrong, I said I think my shoulder joint had moved out of place. She said what can I do I don't want to hurt you. Just pull it hard. she pulled my arm and held my shoulder it cracked and crunched loudly and went back in to place. The relief was so good. It still hurt but not as much as it did, more sore than pain. Thank you Joanne.

The Snow on the way home was very thick and settled. Once home I took muscle relaxants and lots of pain killers, plus rubbing in tiger balm my whole body was stiff and spasming up. With a lot of pain in my bad foot. That is the weird thing with my RSD what ever I hurt, my foot always joins in with its pain.


My shoulder is a lot better, no bad pain just feels sore. I feel very stiff but its physio tomorrow so Wietse will sort me out. Went to see Ness about Ging he is a lot better and going back to the vets tomorrow for a check up. I am so pleased.



Wietse put needles in my head, ears, neck and shoulders they did not jump out like last time but they still hurt going into the muscles which are still very tight. I talked to him about my shoulder episode he said after the needles are removed he will massage them. He was very pleased that I have bean able to go for a run at last and coped very well. With the needles removed he set to work on my shoulders. He thinks I had a SUBLUXATION it means a partial dislocation as if I had a full dislocation it would have hurt more and Joanne would probably not have bean able to put it back into place with out medical help. I am so pleased it was not a full dislocation. He said it could happen again.


When I first went into the shed today there was Ginge sat in his usual place he is still not back to full form but is much improved. My shoulders feel sore and my hips are stiff after sitting for a while. I have a job to walk but once I get going I am alright. My foot is painful at the side especially when I try to bend it. My temperature changes are no better. The tablets MELATONIN given to me for sleeping are no good and do not work for me, so I have stopped taking them.

Well as you can see quite an eventful few days take care

love Gill

Leaving comments...

Some people I am told are having trouble leaving a comment.This should help.

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