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. 






June.

June 1st

Had one of then phone calls today, the sort that tell you your computer has virus or is about to shut down. I humoured the Indian lady, they are mostly foreign in an Indian call centre.
She said your computer is at very high risk, as it was down loading viruses. We need us to sort it out and get to the source of the problem. I asked her who our Internet provider was? She ignored me and carried on talking. Again I said who is our provider- again she did not stop but carried on talking what she/we needed to do. Referring to a sheet in front of her no doubt. I started talking and asked her again about the provider not stopping this time, and said you are a con call swooping on vulnerable people. There is nothing wrong with this computer at all. I put the phone down and checked out the phone number on the Internet. Lots of stories from people everywhere. Some would have bean taken in by it all and worried that the computer will become unless. They get in by logging onto the computer by an invite from you, after a lot more questions to scare you. Sort out a few non problems that you don't have, then charge you around £170.00 for the privilege to get your computer back. Hopefully they will be soon shut down, but as one gets shut another one takes over.

Well that's my rant for the day, I hate it when people get hurt like this and it's happening more and more.

2nd

We will be having new neighbours soon as they have got the keys to Ben's house next door, a few things need to be done first. Quite a bit of noise for the next few weeks, they said but as one family will be moving in soon, another will be moving out a few doors away. Shame to see them go too but I wish them all the best in their new home. So two new residents to the street soon. We have bean here forty three years and have seen a lot of changes and people coming and going.

My left leg, knee and foot operation side are very swollen and sore. I have bean taking a lot of extra tablets. I would have thought by now things would be back to normal, but no I am still on the crutches outside the house. Because the RSD is having a field day now, with both sides now being attacked with pain. I have bean quite restricted to what I can do. Not being able to go out with Summer on my own walking, longer car journeys are out too. You all know what I mean, every day things that non RSD people do without thinking about it is so frustrating at times. As I have said many times I am not an indoor person. Hopefully my knee will soon start improving and I can get on with my life. I do have my scooter but it is difficult to get it out on my own. So unless someone is here to help me, its a no go, but I am home a lone Summer is here but not too much help.

Jamie-Lee biked around four miles on her little bike to see her friend Tracy today, with Lindsay of course. She loves her bike and goes on it whenever she can. Well done both of you.

3rd

Colder start to the day where has the Summer gone? On the river we saw a swan and seven very young signets but no Dad. I know Swans mate for life so I hope he is alright may be having a lie in!!

4th

Full PAIN everywhere today- really getting to me now. I have had a headache since my SEIZURES.  Some of this could be because I am in more, but its very annoying. At least we have a garden so I can do a bit there. I sprayed the garden for green fly. This has needed doing for a while but either rained or bean too windy which has held it up. Soon after finishing though it did rain but not for long, any way job done.

Angela has gone to Wales for a few days with her brother to get fully fit after her operation. Hope it does not rain all the time.

My friend phoned up and said she is having a baby after a long wait with many problems. A few baby things I think to make soon, when she finds out the sex. I hope things go well for them all.

5th

Visit from Joy today- always nice to see someone. She is still not good with her back pain, but had a scan so hopefully that will show something up. A good chat and catch up with all her news and mine too which is not a lot at the moment.

7th

Andrew out with Pup and I today as Paul is out most of the day. Summer enjoyed her walk very much  chasing after her ball. So tired when we got back so was I. I have bean walking a bit outside without the crutches. PAIN is still here, knee tight and sore if moved wrongly, which seems to be every way at the moment. Five weeks now and still not right. I feel very light headed and very tired almost like I am getting a virus or something. Could be tiredness or the RSD striking back.

8th

Got Jamie-Lee for the day as Tommy-Lee, her brother is in a knock out football tournament. Raining heavy too so a wet match for everyone. Jamie-Lee arrived at nine. This could be a long day as Lindsay said she was tired. Hopefully I can keep her happy. She was a bit moody before dinner but after two sausages, chips and gravy she was very happy. Played with all sorts today plus she bought her Ipad, always a standby for when she is tired.

Lindsay phoned up and said the boys were in the semi final of tournament so they were doing very well. A bit later Lindsay came home with the great news they had come runners up in the final. So very well done to all the team and Ben their Manager. Big cheers all round. I gave Tommy-Lee a lolly as a reward not much I know but I think he was so happy at how far they got, so it did not matter to him. He stood there beaming with his medal around his neck.
 Tommy-Lee.
The team- Ben on the left- Garry in the middle.
They manage the team between them.

.
They soon all went home and I was able to relax a bit myself.

Angela back from Wales now, a nice change she said but a lot of rain fell I said it has here too.

9th

Hey rain stopped and washing out blowing well. Helping Paul clean up. Andrew at work and Summer thought she was going with him for some reason. She looked very sad when he said goodbye to her. He will not be long today Summer as its Sunday 10.30am until 4.30pm. She still waits for him in the passage laying down around ten minutes before he comes home, how does she know. The ice cream van that came down the street last year, playing the music she disliked so much. Well it still coming but no music. she still grumbles and barks. She knows the engine sound of the van, plus other various car sounds like Paul's and knows when someone is coming here, very clever I think.

10th

A wet start again so Summer's walk was a very mucky one as she got very wet playing with her ball. She was happy and that's all that matters.

My fingers have bean getting very bruised from burst blood vessels. Just from holding a knife, door handle, even just turning on the tap stupid things.They hurt but do not last long usually. I still have one on my thumb from Age UK from the till, this was a big one though. My fingers on my right hand RSD side go white a lot of the time and have not a lot of feeling to them which makes doing things a lot more difficult.

11th

Rained all night. I heard a lot of it, very heavy at times more like a monsoon. Summer decide to go down Sincil Bank today instead of the common. We thought it would be drier but no it was flooded. The drain holes from the road to the river get bunged up with leaves and rubbish. People also deliberately put cans and bottles in them thus blocking them up..

12th

Not a good day, so much pain whats going on? I have taken four- 400mg IBRUES so far and its only dinner (1-00pm) this is on top of all my prescribed ones. Some days I am taking eight and still I am in pain. I am a bit worried that I did something to my knee when I had the SEIZURES, or is it just the slow healing. Anyway I go to the Kingsmill on Wednesday the 19th So I will soon know. My shoulders are bitterly complaining so are my wrists. If I don't use the crutches out the house I can not go very far. Wietse did say not to use them at all but it will not be much longer I hope. So when off them for good hopefully the shoulder and other stress pain will go..

The weather is cold again, my hands turned white today and my face was red. I think that's what they mean by Flaming June I think, as its certainly not the weather. I got earache too with the cold wind.

I wrote in my diary today-- WHATS A LIFE- IF YOU CAN NOT LIVE IT. That's how I feel trapped within my own pain.

13th

Woke to ice cold feet and legs spasms in both legs. Managed to get them calm again wrapped my legs in the quilt and went back to sleep only for it to happen again twenty minutes later. This time they did not release so I got up, even though I had only bean in bed a shot time. Spasms and pain most of the day.

The river is high after all the rain we have had, I have seen it higher though. Around Lincolnshire there has bean flooding and people bean moved to a safer place. We are higher up so not much chance of street getting flooded. Sincil Bank on the other hand is close by and the football courts near the ground are under water.

14th

Angela came round for a chat and we watched some programs she had missed when she was in hospital.

Our computer has gone wrong big time hopefully it can be fixed. Wayne and Andrew both know what they are doing.

Looking after Ben and Emmie from Seven tonight. Emmie knows I will not be able to go up and down the stairs like I usually do. Emmie did some dancing and played on her Ipad. Tabby came in for a while and I was stroking him. Squidge came home around twelve thirty so not late. When I came home everyone was in bed. Me and Pup again as usual. Watched a bit of television then bed a few hours later.

At last I have finished Shawn Sheep made for a relative. Also a pair of gloves for me plus Munchkin.



Munchkin


15th

Paul out first off so Summer was later for her walk. She did not mind, the common is very wet in places, and she loves running through the puddles. Well there are some big ones and she always seemed to love going through them.

My pain levels are very high and still taking a lot of IBRUES. Knee spasms are bad - OK in the house but walking a distance it tightens up and is very painful. Fibromyalgia  is playing up as well big time.
Andrew has got me a CDB oil vape, not sure if its helping or not but I will keep trying it. I have nothing to loose have I ?

My poor big cactus had died big time- when I repotted it last month I noticed it was a bit soft. I thought it was from the rain as we had a down pour and I did not get it in the house in time. Poor thing but it was old.  


Poor thing this rotted more later and smelt terrible.

16th

Fathers Day. Lindsay came round in the afternoon on her own for a change. She got Paul a mug, pen and a teddy. Wayne sent a bottle of Whisky and Andrew got him beer and is going to pay for the Chinese we had for tea.

So much pain later- what is it?  RSD or the knee recovering, I will soon have answers hopefully as I see Mr Joby John on Wednesday. Not sure what I want to hear from him as if its the RSD playing up it could go on for a while. On the other hand if the operation has not done the job whats next? Any way I soon will know.

17th

Took Summer out on my own today and she was very good. Bit awkward but when we get on the common its easier. She loved it today still quite a bit of water around but its drying up.

Normal day- cleaning up and washing a lovely warm windy day so the clothes dried very quick.

Still struggling with the various pains but sitting down makes it no better so might as well just carry on as much as I can.

19th

Kingsmill Hospital today for the follow up appointment to see Mr Joby John about my knee-- what will he make of it all.
We (Paul and I) got to Kingsmill early so went for a cup of tea and a sandwich. Not there in clinic  very long and we went in. Mr John thinks my knee is still healing and will just take more time. He assured me that even with having the seizures the mend he did, will not fail. He showed me on a drawing he had done. I felt better after him saying this. He suggested a steroid injection like I had last time would help. This did not help last time because the knee needed repairing but now it should. I agreed and went into the treatment room and waited for him. He also said try one crutch when you can and then none. I am to go back in six months.

The injection does hurt but there is an anaesthetic in there to help with the pain. Right here goes, the injection was going in and the pain was crazy, burning like larva and hurting way more than last time. All done just lay there for a while he said, the nurse will come in and tell you when you can go. After he left I felt very strange, pain off the scale and far away feeling. Hot and heart pounding in my chest. The nurse came back and said right get up slowly. I started to and felt like I was not even in my body. She shouted lay back down you look terrible and I felt it- just stay there and you will be OK soon she said. I lay there like I was floating very hot and knee on fire. My body was also getting hotter and painful. She came back in and still said I did not look right. I think we will take your observations. She started with temperature and pulse both were raised. Next blood pressure, this was well high. 210 over 100 plus. No wonder I felt so bad. she asked me what I took for blood pressure I said nothing I don't have high blood pressure. She said we will check it again soon. The nurse came in about ten minutes later, she did the checks again, still very high. The nurses looking after me were Jenny and Lesley- they were very concerned. A more senior Nurse was called Susie came to see me. Paul was asked to sit with me. Two more blood pressures were taken still very high--204- 186 over 100 plus.
Paul went to get a wheel chair but the nurse said stay there I will get one for you. They did not want me walking to the car or walking anywhere. I was getting worried now. The blood pressure was taken again and still the readings were high. They were so concerned that they said I should go to there A and E. Mr Joby John had bean in a few times to check on me as well.

Susie and Jenny I think it was, took me straight there in the wheelchair . I was seen within five minutes. Blood pressure still 186 over 100 plus. They said that I was just below the level to be admitted. Very much at risk from a stroke or heart attack. I was more worried now as I did not feel that good as it was, now worse. Any chest pain or just something different get straight to Lincoln A and E.

I would like to say a big thank you to the Nurses, Jenny, Lesley, and Susie plus Mr Joby John for looking after me so well. Also the Kingmill A and E department. 

Nice to be seen so quick but it does get you a bit worried.
Any way it was the injection. I was fine this morning so I will be tomorrow. I will see my own Doctor or anyone I can tomorrow. If I feel worse chest pains, or any thing different I will go to Lincoln A and E.
The drive home was not good, pain had built up everywhere and my knee was on fire and I was still so hot too.

20th

Saw a Doctor James and he took my blood pressure and it was still very high. 188/114. He wanted me to start taking tablets for it. I said NO leave it a few days and see what happens. I am still sure its a reaction to the STEROID INJECTION and the RSD doing its thing. He said I was very much at risk from heart attack or a stroke They do say some nice things to reassure you!!!. I know it was for my own good but I have never had problems before this apart from illness of course. He has said I will be fitted with a blood pressure monitor soon and that will be arranged by the nurse next week. He will see me in a weeks time. Go home and rest- any chest pains or lack of functions go straight to A and E department.

21st

Happy Birthday Andrew- his day off so that good.

Spent most of my day doing the beds, washing and ironing quite a busy day. Still feel very hot and not right but sitting down is no better so might as well get on with it.

22nd

Lindsay came round and said STEROIDS can make your blood pressure go up. I looked it up and it can. RSD makes it worse. When I had one last time before I had my knee done it was alright though. This one did not hurt nowhere as much as this time. May be that the RSD was being kind to me.

Having Jamie Lee over night, hope she is good as I do not feel my best  today. This was arranged a while a go so I could not really say no to her. She will be fine, if not lock her in the shed. We had a game of Monopoly before Lindsay went home, Jamie-Lee won.
Andrews here to play with her as well. Good rest of the day and she went to bed fine but a bit late.

23rd

Jamie-Lee slept very well and came with Summer and I on the common which was good. She kicked the ball for Summer and she has got a powerful and controlled kick. Summer loved it and was tired when we came back.

Lindsay picked up Jamie-Lee late afternoon and the rest of the day was pretty calm and quite. She liked Munchkin so much I let her take him.

Went outside and startled a bird and it flew over my head. I felt it hit my hair, good job I did not see it as I don't like birds close. Andrew was in the shed and saw it fly over.

25th

Humid day like yesterday I can feel it, headache again not like before though. That I am sure was the high blood pressure.

Joy is here for a visit. I was going to meet her in town but did not feel up to it. I have not been into town since before I had my knee done (1st May)
Angela was here yesterday, she is doing very well and just about back to normal now.

Pain wise not too bad knee feels very tight but not as swollen as it was.

26th

Colder to day- wheres summer gone? Here Mum not you duckie (Summer dog)

Nurse to day to have Blood pressure monitor put on. She took my blood pressure and it was 125/80 so not high and I had just walked here.. This monitor will take the readings every 25 minutes till midnight then hourly until the 24 hours is up at around 11.45am tomorrow When I go back tomorrow the nurse will access the reading and I will see the Doctor later on to discuss the results. The cuff is very tight and I can feel my arm going numb and it feels sore.

27th

The nurse took off the monitor cuff, my arm was very red .She looked at the reading. She was surprised as the highest blood pressure was only 162/84 that was when I was going to the Doctors. I am still using the crutches as my knee soon hurts if I don't. So its quite hard work and the weather has bean very warm/hot. The lowest was 91/58, this was when I was asleep at 4am. These are normal readings. The nurse was quite surprised at the results, I was not. I did not even have to see the Doctor. I was pleased I did not have the tablets as the Doctor suggested. I knew it was the steroid injection. Another thing I am going to have to be careful about. How many more things are there going to be.


28th

Paul is away for a few days till Monday so just mostly me and Pup. My arm is bruised where the cuff has bean
Hopefully I am going to sort out the greenhouse and put in the tomatoes. First I need to take out the Fuchsias cuttings that have bean growing over the last six months, most of these are to Wayne's for his garden the rest are going in two hanging baskets with some self set Lobilia.

Got the fuchsias out and in a tray for Paul to take. After he had gone I dug and watered the green house. Mixed in some compost and left it a while. Very hot in there 115F-- at one point I felt very dizzy and not quite sure what was going on. A bit of heat stroke I think, had a drink and a long sit down then I felt better. A few hours later they are all in.

 


Cucumber plant is a bit small so will go in later. I have seeded another four just in case the snails get this one or something else.

I am now very tired so the rest of the day/night  is sit down time. Had a nice bath- Andrew was close in the shed so he listened out for me. Makes it a bit hard now, as I have to have someone here so I can have a bath. (SEIZURE in the bath) No more early morning ones like I used to have.Later Andrew and I had a Chinese for tea/super. Not one of the best but was hungry so ate it. Knee is very painful, in fact I hurt every where I think the RSD is angry.

29th

Cleaned up all downstairs. Very hot so sweating a lot and more sit downs needed. Knee is very painful and going into spasm. The rest of body seems to be in sync with it. I have taken extra pain tablets again today.
Jenny asked me go to her house for a few hours, so that will be very nice. She picked me up. We sat in the garden, which is lovely and tidy and organised. Her husband Bob was there too. He loves trains, Hornby model type ones and has one set up. I also like trains so watched it going round. A very nice afternoon just relaxing and talking. Thank you Jenny and Bob. Jenny took me home and got there just before Andrew came home from work.

Lindsay and Ben called in. Lindsay did not look too good. She was more concerned about me- as she said I looked tired and pale. When its hot I do not eat too much and she was bother about that.

Very heavy air later and a few spits of rain but no storm. I hoped there would be.

30th

Today doing the bedrooms- not as hot today but very windy, so that will help cool things down. Just finished and put the vacuum away when a plant got knocked off the table by the wind, the soil went all over the floor in the dining room. Managed to clean it up with the dustpan and brush. 

Lindsay called in with two homemade chicken curries- a korma and a madras one for me and both home made. Had one later very nice too.

Not a straight forward month-- but at least my knee is not going to be an extra problem, it just needs more time to heal. I was very worried that the SEIZURES had done some damage. I was reassured by Mr Joby John. RSD takes every chance it can to cause trouble- but I am still walking and doing things, so it has not won this fight yet and never will.

Hope things are good with you all and you have bean able to enjoy some of this very warm weather.
All the best to you and see you next time Love Gill.


At least Summer's chilling out with the hot weather.

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