June 1st
I can hardly believe its June. As the title says FLAMING PAIN this has got no better since last my last blog.
Today despite the pain I am helping Paul in the shed. All the old kitchen units have bean fitted in there. So as it was with the kitchen, things have to go back where they belong. Well not all of them; Paul has had a big sort out.
Later in the day I helped the lady next door with putting some bedding plants in the garden.
My tomatoes have grown a lot as well. At one point I gave them another week to grow or they were binned. With all the cold weather we have had they just refused to get any bigger.
They are still small but are doing a lot better. I think the tomatoes will be probably picked nearer Christmas than summer, but who cares. I might not even get any yet. The past two years have not bean good for my tomatoes. The changeable weather, lack of sun these are all to blame. All I know a few years ago I was picking bags fulls in August . Maybe I have just lost the touch, everything else seems to have gone.
2nd
My neighbour's two doors away have just had a baby girl called Emmi. I saw her briefly today she is very sweet. I am making her a toy plus some thing for Ben, their little boy who's four.
I have not spoken (on skype) to Andrew my son in Amsterdam for a few days as he has bean working hard, fourteen days straight .A day off then more long days. Some for twelve hours. He is doing well and enjoying his life there. I am very pleased for him and very proud of him. Even if I do miss him a lot.
3rd
Cleaning up today. A lot of pain with a capital P. Spasms as well worse in my legs. I will be pleased when I get some more acupuncture. This works as I have said be for but only if its kept regular. Starting and stopping does not help.
Rung Wayne and he said he was on his own all weekend so Paul went and picked him up from Halifax. For their tea they shared a very large pizza and I mean large.
4th
Spasms and pain in both legs during the night well if you can call it a night - Its morning and light when I go to bed. A lot of people have given me advise on my lack of bedtime routine. I have insomnia I don't sleep unless things change I will not. When anybody suffers constant pain the body can not rest so in the end makes do with less sleep. A lot less, this does not help the RSD, and the other things I have but, the RSD does not help any thing.
Nice having Wayne here we are not really doing much but its still nice. I have some one to talk to as well.
Cooked a chicken dinner very good it was as well.Wayne sorted out a few things on the computer and put some music on from his collection for me. We did not do too much just sat and talked. So nice to have Wayne here.
5th
Lindsay and the boys came round they did not know there Uncle Wayne was here, they got very excited. Wanting him to do everything with them. Jay-Jay has bean ill with tonsillitis but is over the worst if the noise was any thing to go by.
All too soon it was time for Wayne to leave and head back to Halifax. Paul is taking him back.
All too soon it was time for Wayne to leave and head back to Halifax. Paul is taking him back.
So nice an unexpected visit.
6th
Pilates one word PAINFUL. You might say stop going as things have not bean too good there- but if I can do some, my past physios aways told me it would help. I know my self it does. So I keep going and most of the time I do enjoy it.
Cilla and Ben next door got me a trowel set for helping with the garden a few days ago . I thought that was very nice of them. I can't always do what I would like to for them, but I help when I can.
Cilla has emphysema and Ben has balance problems and does not walk too well plus other things.
I like to help people when able it makes me feel good.
7th
Too much pain, every where hurts my left side is worse not the RSD side. Joints hurt and my whole body is very touch sensitive. Spasms as well. Normal day then. I was thinking I can not remember what it is like to be pain free. I am very tired but can I sleep? NO. I am very down, the pain does not usually get to me this much but there has bean a lot more than usual. I think I need to have a word with Dr Metta.
Helen my hairdresser is here to do my hair. As usual it looks very nice.
8th
I have seen Dr Metta. He has increased BACLOFEN to two a day then after a few days, if I need it three a day. If this does not work he will increase GABAPENTIN and the MORPHINE. If I do not improve he will put me on DIAZEPAM. This, I don't want as I was very ill with them before. is
I have two options 1- I to take as much pain medication as I can and not have a life. Option 2- Take just enough to get by but be in high level pain and have a sort of life. I left in tears. I get so frustrated that I am not getting anywhere. Also people say how well I look when I feel like SHIT. Amazing what a bit of suntan will do.I know I was very lucky to have Wietse for the time I did. Wietse was a lot more than a physio to me. He was a very good friend as well. I think if Vel would have stayed he also would have become a good friend.
If Dr Metta can't get things sorted for physio I will go private. This will cost a lot as once started I will need to keep going. Dr Metta says I should not have to pay. Well make it happen then. Just about every other condition there would be help available but not RSD. If I was in prison I would get it as standard treatment. Makes you think? Well I have had my say so back to the day to day stuff.
9th
Another bad day. I feel like my head is in the clouds I am dizzy, bad head and pain and tenderness just about every where else. Balance is bad. Nose bleeds as well. I have a very sore mouth and a cold sore on my lip that is painful. Passing out throughout the day. Not a good day. Things can only get better.
At least Lindsay and the boys are here. They have bean planting peas. I said to them to put a stick at the start and finish of the rows. When I looked they had put a stick for just about every pea.
The peas . Picture taken about a week later
11th
A bad night spasms in shoulders going down to my hands. Legs are affected as well. Balance a little better. Over the week end Paul wanted to call an ambulance but I would not let him. Everytime I am in hospital they make me worse be for I get better. I am better off at home.
12th
Got a friend here today so I had a good talk with her. Felt a bit better.
Got an email off Wietse he is well and very busy. I sent him one back explaining how I felt. He sent me some good vibes. I miss him very much he could cheer me up when all seemed hopeless. Also he told me a story about his cat Dandelion who jumped on next doors sky light window and woke up their cat who screamed and scared the life out the owner. Dandelion then came home with a smile on his face.
14th
Acupuncture with Goppi. Every needle hurt as my muscles are very tight and tender. The one in my neck caused a bad head pain like brain freeze. Not a good feeling at all.
I am going to see Jay-Jay at his sports day a proper one, as much as health and safety will allow. A very windy day. Jay-Jay won the egg and spoon race. I enjoyed it as much as I could.
Pictures are a bit out of focus as taken off a video.
Jay-Jay is the one in long trousers in the middle.
I WON--- you can almost feel the execitment on his face.
Getting his first place sticker.
When Tommy-Lee came out of school he gave Jay-Jay a big hug for winning.They do love each other some of the time.We all went back to my house and I had a rest. Very tired and in pain. May be I will sleep later. Bed at 4.30am.
15th
A better night up at 8.30.
Paul is out for the day and I am in town . Not as much pain in the morning . Later on lots more spasms in my arms when I do things like put my coat on or move it back behind me. These spasms are extremely painful and last quite a while. A lot of the time causing spasms in my whole body. My hands are dropping things and jumping as well.
IBS playing up as well. I had a slice of white bread yesterday so it could be that.
16th
Went round to see my friend who lives two doors away . She had a baby last month Emmi. A pity she was asleep all the time I was there. I made her a rabbit and Ben their little boy a puppy Summer . He loved it. The puppy was very hard to make as I had no proper pattern for it and trying to get the features right was very tricky but it does look like Summer as a pup so I was pleased.
Rabbit for Emmi.
Summer Pup.
Real Summer as a pup.
Best of friends
Ben with His new Summer pup..
Ben and Emmi
17th
Spasms in my arms now, when I put my hands on the chair arm to get up. Or press down to lean on things. These are like electric shocks, they leave me felling sick and shaky.
My left knee has gone RSD colour down to my foot and is burning, this is about the only good bit I have left. I have a feeling that the RSD is on the move again. Tried to do some gardening to try to keep the brain busy. There is always lots to do out there.
18th
Now the kitchen is done we are tackling the big cupboard opposite the back door. This holds a lot of stuff from Summer's things to saucepans and bathroom things. A complete make over; wallpaper, shelves and a good sort out. It's where to put everything as well while its being done and finding it again when you want it.Things are going well so hopefully it wont be too long.
I am trying to keep busy and at times this is quite hard. I know myself this is better than doing nothing, for me any way. A long day about nine thirty finish very tired- but the more I do the less sleep I need. Bed at five then I slept for about two hours. I did sleep for about half an hour earlier in the evening.
19th
Up at seven forty five. A warm sunny day, must be the extra tablets... No, I am not dreaming, we have sun and warmth. I am doing a bit in the garden and green house. I still have tomatoes in pots so they have all going in. Also all the bedding plants I grew are in the garden now too. Ready for when it rains again.
My arms hurt from yesterdays work but no extra spasms but I am being extra careful. Very warm I took off my jumper. I am starting an extra BACLOFEN today to see if this helps as so far they have not helped at all. I thought to start with they had but it just must have bean a good few days. As the last few weeks everything has bean a lot worse. A long day but very rewarding though.
20th
Today is pilates I was unsure whether to go or not. Took extra tablets IBUPROFENS and DIHYROCODEINE before I went. I am finding I need even more of these to stem any pain. When I say more I mean like four at a time even to touch any pain this is on top of my usual every day ones. Jo always says even if you come and only do a bit it will help. So I went. I suppose things went as well as they have could have, not able to do much of the arm moves. Also I kept getting the shakes I did my best. Sometimes it gets to me like now, as the others are adding bits to the moves usually ones I can't do.
Later on after the tablets wore off the pain came back in a fighting mood, spasms and pain every where. Getting dressed and undressed is very painful. Even in my chest, I am getting spasms stopping me breathing. Very hard to move with out setting some thing off. I had planed to try to go to bed a bit earlier if I could or a least rest I could do neither. I took more tablets. Temperature levels are playing up big time. I think my body is out to get me.
A bath helps but my RSD foot does not like to stay in long as it sends me warning messages of pain and swelling. Tonight I ignored them, quite hard to do and managed to stay in fifteen minutes.
This helps my shoulders a lot. The pain refused to go I ended going to bed at six thirty.
21st
Today is my youngest sons birthday the one in Amsterdam. Happy Birthday Andrew. we sent him a parcel . Birthday things and a few bits that he can't get there.
Woken by pain at seven thirty, I was hot but dare not move my arms to pull the quilt back. I used my feet instead and guess what, violent spasms there. What a mess to be in hardly daring to move what a life or lack of it. I got up it was hardly worth going to bed it caused more pain.
My last Acupuncture session at the clinic. We did the usual exercises usually I have no problem with these as they are about the same as I do in pilates. Today I had problems with everything balance and pain, going dizzy as well. Muscle twitching and jumping as well. Goppi saw I was struggling . We have ten minutes relaxation as well but my body would not even keep still, never mind relax. Goppi put my needles in a bit earlier. He said everywhere was very tight.
I said my goodbyes and left. Paul had bean trying to ring me. I rang him back and said I will be going into town and would see him later
I headed for the main entrance calling at the toilets.. I I felt a bit rough to say the least. Two lady's asked me if I was aright. One went to get me some water another was talking to me, when things started spinning and I got very hot the lady got further away. I passed out. When I came round I was on the floor with faces looking at me I could not under stand what they were saying. First response were there and a few others all looking down at me. I had passed out while the lady was talking to me and slid down the wall bumping my head as I fell. I was quite lucky I did not hit any thing else.
I came round a bit and was told I needed to go to A&E . I said was that necessary they said yes, just to be checked over. I reluctantly agreed. On standing I nearly passed out again.
Pushed in a wheelchair to A&E I was seen more or less straight away. I did not feel too good and my head hurt. Blood was taken, all observations and an ECG as well. The Doctor asked me later, what I thought happened I said I think I just fainted. Earlier I was a little vague what was going on I think it shook me up more than I thought. I told him about my on going condition, he had a long list to write. He had not heard of RSD. No surprise there. As time went on I began to feel more normal again, well as normal as I can.
The blood test came back. No infections or any thing nasty. A lot of time I pass out because of infections or colds or virus. I was able to go home I was not staying any way as I have said before they make me worse. I rang Paul to come and get me as they would not let you go home on my own. I don't think I would have made it any way. He thought I was in town so a bit surprised.
I was asked if I wanted a cup of tea and a sandwich as it was about three thirty. I had bean there three hours at least I had not eaten since last night meal about six . I did not have breakfast as I felt sick, a side affect of the extra tablets. I said yes to both it tasted so good, beef salad .
Paul came to get me and said, its a change for me to be going home on the day I went in. I said yes I don't normally walk out A&Es door. I said go as they might have made a mistake. Just as we were leaving some one shouted and it sounded like my name I said keep going. They were after some one else not me. What a day I was not that surprised, it happened I think I was luckily I was still in the Hospital.
Felt a bit rough and battered a few sore places where I hit the sink and my head hurt a bit but not too bad. Later I went to what was Andrew's room, to shut the window and hit my head hard on the beam- its a loft room so the ceiling and beams are low. What a day I could have done with a bath to relax my poor aching muscles, but decided against it as Paul had gone to bed. I did not want to chance it on my own. I did not want to go back to Hospital again.
22nd
I feel quite drained after yesterdays episode. My head hurts and aches as well. Three hours laid on a trolley is not good for any one. Stll the spasms and pain go on. Temperature changes as well. I think the RSD has got upset.
I had a bath later this helps to a point, but my body changes colour a lot after. No not because I was mucky. RSD changes, red and purple and intense burning. Shoulders the worst.
24th
I feel a little dizzy when I stand up. Spasms calmed a little not by much though. Still bad in arms and shoulders. I have decided to stop BACLOFEN they are doing nothing for the spasms. I will take one at night for now but stop the other two. Must get to see Dr Metta as well.
26th
Tommy-Lee's sports day. The old school type. I was pleased. Jay-Jay's was the same last week.
Tommy did well and enjoyed it very much.
Easy does it
Tommy is the one
with the long hair and green socks.
with the long hair and green socks.
There was a toddlers race as well. They got to the tape and just kept going.
Having fun.As usual the pain was fighting back. Spasms not quite as bad but I am still being careful how I move. I took two 30mg DIHYROCODEINE this did nothing. Took two more still pain . When I got to my daughters house I took two IBUPROFEN 600mg. This just took the edge off the pain but did not take it away. I did not take any more. These are strong drugs but a lot of time they might as well be smarties. My body has just come used to them. What next? I have now stopped the night time BACLOFEN as well. They are not helping in fact I think they are making the spasms worse.
27th
Olympic torch came thought Lincoln I watched at the end of the street with Paul,Lindsay,the boys and lady next door Cilla. Very good to see even though its costing a lot of money to hold the event in Uk. A big party up hill and fireworks later.
Waiting for the torch to arrive, with Jay-Jay ,Tommy-Lee plus some of there of friends.
The torch bearer getting ready to change over.
Swopped over and on her way.
28th
A day out today going to see a friend. She is called Bev and is Russ's Mum. Who I met, no surprise, though Russ. I am going by train from Lincoln straight through to a place called Beeston . I have never bean by train before and only once by car. Bev is meeting me at the other end.
The train left Lincoln very sunny and warm I was in a skirt no jacket. When the train got about twenty minutes in to the journey. The sun hid and it all went a bit grey and started to get very windy. About half way it started rainning not fast more of a shower. Nearly there and it went very black and thunder and lightning, lighting up the sky and torrential rain. Everybody jumped up and shut the windows. It was as dark as night with a violent storm.
Still raining hard when the train reached my stop. I was lucky a nice man was going to Beeston as well. He told me when to get ready for the stop. Bev was there as promised and we went to the car getting very wet as well. The rain was so fast we had to pull in to the side as the wipers could not cope and all the windows had steamed up. A few hail stones as well. Quite cold.
When we arrived at Bev's House her daughter Becky was there with her baby Lauren. Four months old. I had seen her before when she was first born, on Skype when Russ was round here. So sweet she is and very alert, looking round and cooing and babbling on. I had her sat on my knee- oh very nice. She is a very content baby.
I got them both a rose plant each and a little teddy for Lauren.
Plants --yellow for Bev and Pink for Becky.
Teddy for Lauren.
Lauren so sweet.
With teddy.We all had dinner and just talked. I enjoyed it very much. Soon it was time for Becky and Lauren to go . They live in London. Becky drives a big camper type van. We said our good byes and off she went on her long journey home. Much too soon, it was time for me to say good bye to Bev and go home, back on the train which was delayed by twenty minutes. I arrived back home about eight. A really lovely day thank you both very much.
30th
A better day for everything, still spasms but not as many. Pain dare I say it, a bit less. Quite noisey here. The Annual Waddington Air Show is on and its only a few miles away. On a clear day we can see the planes but today it was a bit cloudy most of the time so could only hear them.
Bad month this time . Too much pain. Too many spasms. Too much every thing. A few good days as well but, not one of my best . Not the worst either.
Hope things are a little better with you .
Love Gill.
