Christmas shopping and RSD don't go together, the shops are getting so busy. I need to go on my scooter into town, but the shops are so full of extra stands and Christmas goods., it is a job to get round, a lot of the time I need to park up and go round on foot. This in its self is not good as people tend to knock into me or tread on my bad foot. At the best I come home very sore and tired. When I have bean on my scooter I get very bad arm and shoulder pain I think it is that I am in the same position for too long, also scooters can be very cold things.
Physio today Wietse did electric acue today on my neck, it was very painful, the needles pop out as the muscles are so tight. He massaged my foot it hurt so much. He pressed on my hand to show me how much pressure he was using it was hardly any I was so shocked as I thought it was so much more.
The pain seams to be up and down mostly up, I am trying to cut down on the tabs I take as it got very high again. I try to cope with music or something to take over the pain, but as my body does not get much sleep it is very hard, long days very short nights.
Nottingham hospital today to see a neurologist. On the way we (Paul and I) ran into some traffic as there was a diversion we were stopped in our tracks, we had set off early as it was but now were running late. Russ was meeting us there as he had seen what had bean happening to me, and could tell them his version of events. Russ' phone decided the day before to stop working so I could only text him, not a good idea , as I am not very quick at texting, but we some how we worked it out. We arrived there with 5 minutes to spare. Paul dropped me off at the entrance and went to park the car. I found Russ and went to the clinic, Paul arrived a lot later as he had to park the car a long way from the hospital, due to building work going on.
As it worked out we did not go in until nearly a hour after we should. The doctor was a lady she was very nice, and listened to what we had to say. She then did some tests but was not too sure what it could be, she ruled out epilepsy for sure, but maybe the start of some thing, or just sheer exhaustion from lack of sleep. She got the opinion of an another doctor who seamed to think the same, I was to see my doctor about a different type of sleeping tablets to see if that would help. they gave me a open appoint which means that I can go back at any time if I need to. I was sort of relived.
Going back to the car was a long way, too far the pain struck with avengence, I was shaking with pain I stopped with Russ while Paul went to get the car as I could not walk any further. Once in the car I took IBRUS and H CODINE the pain was so bad I could not even think or speak for a while. We headed for Russ mums house where even though she was going to work she kindly left us some soup, cheese and mince pies, which Russ put in the microwave and forgot about so we did not get any pies. After a good rest the pain lessened. and I felt a bit better.
Physio today pretty much the same, foot very sensitive. Afterwards did a bit of shopping came home tired - no exhausted... and in pain. I looked very pale. In the afternoon I just tried to rest.
Club cross country on common today, I went to watch. I still find it hard as I think I should be running with them as cross country was my favourite time. I could not watch the handing out of the trophy's and medals as I in the past have won some of them.
Later on we had visitors most of after noon, during which I went to sleep mid sentence again.
Doctors today discussed hospital information he gave me some sleeping tablets to try. I told him about my blood sugar being low and he said eat more chocolate and sweet things over Christmas - not many times a doctor tells you to do that. I need to write down when falling asleep.
25TH CHRISTMAS DAY
My son Wayne is here for a few days, which will be good. A really nice day, got some very warm boots, DVDs, jumper, books, gym ball, smellies plus other things. Went to my daughters after dinner to see grandchildren they were really excited and enjoying themselves.
After tea I am told I was on/off asleep for a hour.
House full again very noisy, very tired and in pain.
I saw Irene today, for counselling, it went OK. I did last bit of shopping went home worn out. I am in a lot of pain today hip and foot shoulder not too bad. I fell asleep in front of Andrew nearly falling off the chair. Rested on the reclining chair. Felt better afterwards but still very pale.
Today I feel very dry, hardly enough saliva to swallow. My food will not go down if I try with a drink I choke, I had this before in July. Later in the afternoon I took Sandy for a walk to wake me up as I had bean falling asleep again. Felt bad when I came back so went to bed for a while. Still felt bad - hot,dry and in pain. Family round for tea could not eat much fell asleep at table mid sentence again.
Well its the end of another year, I am quite pleased to say good bye to it as it has not bean that good, next year will be better.
HAPPY NEW YEAR TO YOU ALL AND LETS HOPE ITS BETTER FOR ALL OF US
I took off my foot guard off before I went to bed, to see if I could manage with out it (it keeps the quilt off my foot as it can be very sensitive). Unfortunately it did not work out, my foot got very hot, and the pain was worse than normal. It went back on. I was disappointed as my foot had not bean too bad lately, its just the rest of me. Hip is still bad so are shoulders and neck, right wrist all so not good.
Getting spasms in shoulder and neck, shooting a pain down to my right wrist. Used TIGER BALM it works so long as pain is not too severe. Paul is back at work to day after beaning off since my fall/dive (29TH OCTOBER). The PROBATHINE is now working, helping with the sweating - so that's good.
I ache a lot to day, feel light headed, hot, cold and weak. Russ said I looked tired and pale and told me to sit down and rest, I reclined in my chair for over an hour then felt a bit better, I have got a cold so it could be something to do with that.
Went to the theater to see "Run for your wife" it was really funny, it was nice to get out some where other than physio, or the doctors for a change.
This cold is really playing up, the pain and burning, my foot is very swollen and hot, lots of extra tabs to day as whole body is aching also, coughing a lot, damn cold.
Physio today Wietse did acue and massaged my foot. He felt my neck, he said it felt a lot better than last time. I agreed with him.
Went to my sons Wayne's for the weekend, in Halifax, it was a very foggy day. I suffered a lot of pain on the journey going, the weekend was good, it was really nice to see him. The journey back was a lot better for me as not as much pain.
Put my head back to gargle, and my neck went into a spasm. The pain was so bad. I had to massage it with a warm towel to get it to release, it took about five minutes to go back to normal, even then it was still very painful.
First counselling session went quite well. My cold seems to be getting better still have a cough though. My foot is burning like a fire, neck is very stiff as are shoulders, hip is very painful. I feel very down today.
Physio cancelled, Wietse is ill, poor Wietse - get better soon..
Went for a Christmas meal with Paul for a charity event (19 of us in total ) I was not feeling my best, a lot of pain and spasms through out the meal, also the noise bothered me a lot. Not used to all this going out.
Got a letter today from doctor about my ECG results he needs to see me, rung up but he is not there today, it is a bit worrying.
Doctor appointment he said ECG was border line for further investigation but is not taking it any further, as could be to do the tablets I take, will review it at a later date, much relief for me. He said I can double ZANAFLEX (to 6) when I need too all so take the full amount of GABBERPENTINE it will help the pain, (6 a day I have only bean taking 3/4) I also take H- CODDINE with IBRUS it works very well for other than nerve pain.
Good news my neck/shoulders have eased off and are not so stiff and tight, cold about gone still a bit of a cough.
Some days I have no fight left the pain just takes over and wins. Then other days its like running, I get second wind, and start fighting back, with all I have got. The bad days at the moment out number the good. It seems when I get a good few good days, really bad ones follow, like I am being punished. All my tablets have bean upped as much as I can with out over dosing. I think the spell in hospital (JULY) set my body back a lot, also the fall did not help (OCTOBER) When things get too much I put on music CD's loud, and let the music wash over me, and take the pain away for awhile.
That's all till next time, keep happy and smiling love Gill.
This should help.
Click on to comment next to envelope, at bottom of each posting, write comment, copy Text in box the same as shown, choose ID, click on anonymous, see preview, publish.
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My foot and right side (RSD side) continues to be much the same, foot burning but feels ice cold, shoulder burning and tingling. My neck is very stiff, hardly able to turn my head. Most days I am very tired, as still not getting much sleep.
Physio much the same as normal, Wietse has bean massaging my right hip, it really does hurt for a few days, then is a bit better for a while. After coming home after physio I was in a lot of pain so took some ORANORM, an hour or so later I was very sick and continued being sick a few times. Whether it was the pain that did this, or the ORANORM - I not too sure.
The sickness lasted only the day, but it certainly did not help the pain, I was all ready in.
After a few days of very light diet I felt a lot better.
PAIN LOTS OF PAIN
Why is my life so full of 80% PAIN 20% LIFE. I feel there has to more than a life of tablets which I take some day almost to overdose levels, having very bad spasms, doc has doubled ZANAFLEX to 4mg 3 times a day. See if this helps, the cold weather does not help.
Have stopped CLOINDINE day time as making me very cold and dizzy I take just one at night, it really does help with the sweating and temperature changes of my body.
Wietse manipulated my foot and hip today. It really hurt like hell. After he finished I felt really dizzy, I sat down for a while then went home. Later on Paul thinks I passed out in the chair.
Muscles very stiff, lots of BIOFREZZE and extra extra tablets for the pain.
Back to doc, mine is away, so saw another one, knew nothing about RSD but said I should probably go on steroids, gave me 2mg of DIAZAPAN to be taken 3 times a day..
Physio I asked Wietse if pain and spasms could be related to the MORPHINE withdrawal, he said it was possible, or could be a virus, or just the cold making me feel worse. All he did today was very gently massage my foot as in a lot of pain no needles or hip massage to day.
Very sick again, woken in the night with real bad spasms in right shoulder and arm feel really spaced out like I am not really here, could be the DIAZAPAN. Keep having more and more of these like passing out things or blackouts ( have not mention them too much as thought they were from lack of sleep) but I do not remember them, also people say I am slurring my speech.
Bad headache and generally all over body ache.
My friend Russ says I look at bit worse than usual today kept falling asleep or blacking out. I had dinner and watched Russ play on the WII. I have a new game Mario kart, I was half standing half leaning against the dining room table, talking to him, mid sentence I fell forwards, crashing into the fire, knocking my self unconscious.
Russ tried to bring me round but could not so phoned for an ambulance. Paramedics came first then an ambulance. I was under the fire (fire mounted on the wall) they had to roll me very carefully as they did not know if I had broken anything with having OSTIOPEROSIS, I had a very bad head, and was unconscious a lot of the time .
I was put on a spinal board with a collar and head block and strapped to the board, I kept saying I did not want to go to hospital as it was a nasty place, the ambulance man said it was nice, I said it was not I had bean before but I was taken anyway. Andrew my son went with me. I was given gas and air for the pain it helped a bit. I settled a bit, then started hallucinating about being chased, thrashing around as much as I could. When I came round all I could see was a face (a paramedic), I put my hand up to feel him to see if he was real he was very smooth (alapecia).
On arrival at the hospital I was given lots of xrays and kept blacking out, in lots of pain, I stopped there for a while. Then after a long discussion they let me come home, nothing broken but very sore and bruised on left hip, left arm and right foot, head hurts so does face, and to see my doc as soon as possible to have blood tests. Bruises on my face and cut on head were not visible at that time but came out a few days after.
Had a really pain full night Bad spasms and bad head.
For a few weeks leading up to the events of the 29TH Gill had been having lapses in consciousness on a daily basis. One minute you would be having a conversation and then she would literally drop off. On awaking there was no recollection from Gill of even falling asleep. From a friends point of view this was not something I had seen before in Gill and knew that the RSD was taking its toll more than ever before. When Gill finally fell to the floor I stood back and part of me felt that there was a positive to what had just happened. To watch a friend fight to the point of her body saying enough is enough is hard. At least now i thought they would point Gill in the right direction. Now Gill is off to QMC Nottingham to see a neurologist which is the right thing for her as the RSD is about links and messages to the brain regarding pain. Hopefully this is the opening to at least lessen the pain to let Gill get back some independence that we all take for granted.
Saw a different doc as mine still away organised blood tests.
I was still awake when a firework went off out side bedroom window my body jumped up from the bed and went into a massive spasm. I was in so much pain, I nearly took morphine. I took H CODEINE and ZANAFLEX the spasm settled down a bit.
Had blood tests see doc next week. Able to move had to go back to using wheelchair again, pain well off the scale. The next day I spent in bed as was in too much pain to move.
Woke with bruises on face around eye on left side and across forehead, it really hurt eye swollen up, partly closed. Still in a lot of pain.
Woke up early morning and could not move my body, only head, but I could talk, this lasted a long time maybe over half a hour. I woke Paul took some H CODEINE, finally went to sleep when I woke later that day, I had all my full body feeling back again.
Saw doc, one I have seen lots of times before, he was quite concerned, and did various tests. Blood tests have come back, they showed I am short of vitamin B12, used for osteoporosis and immune system, cholesterol border line as it has bean for years others just OK.
He is sending me for an ECG (heart analysis) and to see a neurologist on December 15TH for tests. He has stopped DIAZEPAM (was only short term and he does not like me being on it) and CLONIDINE(probably making blood pressure too low so could be some thing to do with blackouts).
More bruising has come out.
Wietse saw the amount of damage I had done when I fell. He said I should wear knee and elbow pads and crash helmet like roller bladders do, I said can I do some, he said NO. Put in needles and gently massaged my foot.
Talked about what doc had said.
Still having a few blackout things, bruising gone down a lot, able to move about a lot better now, not using wheelchair now.
Having quite a lot of sweating, mostly at night, going to see doc tonight. Most of bruising has now gone. The cuts and grazes all so are going, but they still hurt, especially my foot and hip.
I feel a lot better now, took Sandy for a walk, for the first time, since fall. Paul came too, it felt really good. I have how seen doc he has put me back on BROBATHINE 1 just at night time I will see if this helps.
Had physio today, Wietse worked on my neck, the pain was probably some of the worst I have experienced with Wietse. I felt really sick, he said the pain would settle down and then I would feel a lot better. I hope so. He all so worked on my foot more gently as it was still sore and bruised from my fall. Lots of extra pain killers later on in the day.
My neck feels very stiff, still hurts but not as much, rest of body average pain. PROBATHINE is sort of helping with night time sweats, but not as it well as before. Now all I need to do is have a full nights sleep.
I have got my ECG heart test on Monday, but I am not expecting it too show really anything wrong with it.
Well bye hope you are all good and well, love Gill.
Nobody seems, to understand, but they are not, to blame.
I feel that, I am on the outside, looking in,
I feel so down, and lonely, I don't know where, to begin.
The nights are short, the days are long,
I feel so weak, but, I need to be, strong.
Life is not the same as it was, the pain is winning,
please, I need some help, is this the end, or the beginning.
As the devil, (RSD) drags me deeper, and further, down, into his lair,
all I feel is loneliness frustration and despair.
The pain in my foot has gone back to really burning and being sensitive again, almost like when I was first diagnosed. My foot is very cold but burning most of the time have taken a few more tablets than usual.
Woke up with really bad pain in toes just like somebody breaking them, my leg went into spasms then the worst of pain went. The next day my foot was extra painfull when placed on the ground.
Today I received a letter from LINCOLN COUNTY HOSPITAL with 3 apologises for the way I was treated when in hospital [9TH -24TH July] so maybe next time I am in hospital the treatment will different RSD is not to be taken lightly it does not like change unless it does its self.
This weekend went to see my son Wayne in Halifax painful journey there, made my neck very stiff and sore. Foot also reacts badly to vibrations in the car. Good weekend journey home not as pain full.
Have started taking 1 CLONIDINE morning and night. I am still getting dizzy on standing so may be this will help, it is a lot better for me than PROBATHINE. But one of the bad side affects is dizziness from blood pressure dropping and staying low but it really does help the RSD sweats.
I have bean getting a lot of tingling in shoulders and back, going down my right side, worse across the shoulders. Still getting pain in left hip, getting worse.
First ride back at running club, mixed feeling, all of them were pleased to see me back. Biked about 12 miles most peddle power, some electric.
Physio today, asked Wietse about tank. He said it would not be advisable at the moment, as he thinks I am not strong enough yet to take 3 sessions a week - which is what I would have to do as bean out so long. My doctor agreed with him. Physio went much the same as usual.
Was advised by Michelle (another physio who works with Wietse) to drink green tea (high in anti-oxidants). She said would help with bloating and digestion. Not very keen on it but willing to give it a try. I got some with jasmine & some with lemongrass - like the lemongrass one the best.
Got the cross trainer today feels quit strange to use. I am allowed 5 minutes biking, 5 minutes standing up as running mode twice a day. Foot is very stiff & does not bend but will adapt to that, its the nearest thing I am going to get to running.
Spent the night at Branston Hall, a posh luxury hotel for Pauls birthday. He was given this by a friend who won it and thought we would appreciate it more than him. That was really nice of him. [Thank you Don!]
The room was nice, the bathroom had a corner bath plus shower(ooooh!). The meal was quite posh - meaning very small and rich, not bad but I prefer a normal meal. I did not think it would be enough for Paul as he eats a lot, but he said it was.
Saw my doctor today for monthly checkand more tablets told him I felt very down he said it was hardly surprising. He would get me some counselling to see if that helps.
Meeting for counselling talked and told him how I felt. He said he could get some next year as there are big waiting list its a good job I am not too bad at the moment.
Having a job to walk without pain somewhere in body hopefully it will be sorted out at physio. Physio today missed last week as they were having a new floor fitted so this week was in a lot more pain than usual.
Wietse put needles in ears, hands, forehead and neck. The neck one attached to electrics, the right side neck one came out the electric pulse really hurt my neck. Wietse popped another one back in, that was better.
He just held my foot today and warmed it, as was sensitive and painful, he massaged my hip and stretched my leg it really hurt, hopefully this will help.
Hip not as tight foot hot, burning and cold a lot of pain, still tingling down right side, may be over did the cross trainer, as went on longer, early hours of last night, or was it the WII (games console).
The weather is getting very cold not a good thing for us RSD people, could be why getting extra pain.
Well see you all next time love Gill.
If you are unfortunate to get it, you wont be pleased.
Sweats and chills, every where in the body,
makes you feel sick and very wobbly.
RSD will cling to you like leaches,
then spit back your life, in mixed up pieces.
My foot so big, the shoe wont fit,
the pain it makes you, feel like shit.
Hot and cold, strange colours, on hands, legs & toes,
the pain, I go though no body knows. [some do]
Hardly any sleep at night, long days ahead,
all I want is a pain free night, and my comfy bed.
Some tablets can make you feel a lot worse,
but you will try most things, to lessen this curse.
Acupuncture, massage, physio sessions weekly
Wietse puts me through hell, but he smiles so sweetly.
People ask how are you today,
You grin and lie and say OK.
I have scarified running with a scooter,
its not as fast but does have a hooter.
Dark and gloomy thoughts go round in my head
What I am thinking most people would dread
It gets you down you feel so alone,
but I suppose theres all ways the Samaritans to phone.
With so many people in the world,
How come when I speak I am seldom heard.
There is not much research, to give you hope,
you just have to be brave, and cope.
The cure for cancer has nearly bean won,
the cure for RSD, has hardly begun.
Is there a future with RSD,
Is there any hope for you and me.
I bet a lot of you feel like this.
Maybe I have found something that works for more than one thing I do hope so..
We (Paul and I) set off about mid day on Sunday 27TH July. Sandy my little dog goes next door, to her "Auntie" Cila and "Uncle" Ben's, for her holiday as she is now 14 years old and traveling is a bit much for her. My son Andrew (20) stays at home.
We are heading for Kessingland beach in Suffolk. The journey will take about 3 hours travel time, but we will be stopping a lot more than usual.
The journey was smooth with no hold ups I think every one had set off yesterday, the pain was pretty bad on the way, in my back, shoulders and foot.
The chalet was clean, large and in a quiet area, in fact the whole site was quiet, just what the doctor ordered. We got unpacked had a cup of tea then, I had a lay down, when the pain gets too bad the only way to relax my body is to lay flat.
After a good rest more tea. we had a look round the place the swimming pool was close so was the restaurant much to Paul's delight. We decided to have a meal there, as chip shop was closed [it was hardly ever open - as we later found out] We sat down and ordered we were told a 30-40 minute wait. that was okay.
After well over a hour the young man who seemed to be doing everything (he was running round the tables and getting a load of abuse from most people) came over to apologise - a waitress had gone home ill. It would not be too much longer,we said that was fine,we would wait.
Half a hour later he came back to re take the order, as things were not going well I asked if the chef had shot him self, he said not yet,they were under staffed a lot of people left and got refunds. Lucky for us not so many meals to do.
We sat it out, Paul went to get my tabs as was in a lot of pain.
The meal arrived at last, it tasted so good,when we finished we got up to leave. Out side we saw the young man who had bean flying around so much ,he apologized and said come in again and we give you a commentary meal, he was the assistant manger.
We walked back to the chalet not far, but it was very pain full, I laid flat again and let more tabs do there work.
Today I just rested still felt very spaced out and weak from every thing.
Today we are going to Africa Alive
The day was very hot I spent most of the time in my wheelchair,we saw lot of different animals including monkeys, chimps, zebra, giraffes, lions, cheetahs, plus many others.
We all so watched THE ZULU NATION they were dancing and singing they were very good and so funny to watch.
We had dinner saw a bit more then we decided that was enough for today as I was getting very tired and in pain, so we headed back to the chalet, it was very close to us, so a short journey
All in all it was a good day, I even got sun burn on my legs
Back at the chalet I had a lay down as felt a bit rough.
Went into Great Yarmouth to do a bit of shopping it was very busy, spent most of the time in my chair again. Today I felt very tired and down I think it the after affects of all the extra tabs.
After dinner we went to a place called Southwold, a very quite place with a Pier we walked along it and looked out to sea it was very peace full. Under the Pier were lots of jellyfish. We sat and had a cup of tea then headed back to the chalet again. More rest more pain. Took last PROBANTHINE tab today (for sweats)
He used to live in Lincoln we were told, he bought the house there because his wife did not trust him enough him to stop there after his shows, so every night he had to travel back to Lincoln.
We also saw a ice cream boat but did not have one as was on wrong side of river.
Later on that night I stubbed my right foot on a step the pain sheared though my body like electric shocks they lasted quite a while more tabs, a lot later the pain was more bearable.
Lucky my foot was only a bit bruised.
The journey home again was pain full ,but I got a new cushion for my neck which helped a lot, the sweating started on the way home , more PROBANTHINE I think.
We had good weather all week no rain till night time and then one storm late at night & a down pour around 8pm. The holiday was now over but we made the best of a bad time I think.
I woke Paul up by shouting him, eventually, he is a deep sleeper. He helped me up stairs to bed.
The next day I still kept being sick had to ring physio to cancel. I felt very weak, really bad head. I could not even keep water down.
I just rested & dozed all day. By night time I could keep water down if I sipped it.
Very weak today stomach is bloated & sore, sweating a lot,(got more PROBANTHINE)
Feel quite a lot better, but quite weak, PROBANTHINE does work with sweating. Got weighed to day have lost about 8-10lbs in weight since going into hospital. I think I got the virus because of being run down, nobody else in the house got it.
Hopefully I will keep well now, hope you all do too
As it got lighter the reality came to me, it was more like a geriatric ward.
Most of the patients were either deaf, senile or both. My heart dropped I sobbed,I thought maybe something had happened to me that I did not know about. The patients were very tiring and kept asking the same questions over and over again.
The lady opposite me did not know where she was or if had she eaten, thought I was a nurse, and kept asking which was her bed. She was like that all day apart from when she was asleep.
The lady next to me was very deaf but nice, but could not speak to her as she never heard me. The lady on the other side slept most of the time looked like the granny of THE ADAMS FAMILY, she ate like a animal.
The lady at the end of my row, who I did not see properly, till the last day, seamed normal & was fed up as well.
One lady though Maggie Thatcher was still in power and was very confused.
A German lady was very loud and very possessive of her things but all so deaf but quite nice.
The lady at the end got to me the most, she kept shouting out LET ME DIE I WANT TO DIE most of the time she was awake, I cried because I felt sorry for her, I though she might have a terminal illness but was told she had just given up, there was nothing much wrong with her.
The pain began to subside and I was able to move about more, I got out of bed properly for the first time, I sat in a chair by the bed. I hurt so much - from so many spasm's.
The lady opposite me kept asking the same things over and over again. The other lady was moaning about dieing all day long it really got to me. I got by, with help of the radio and my Ipod, I sat there most of the time with my eyes shut.
Physio came today and I walked for the first time for nearly 2 weeks one on either side holding me. I was very wobbly, they came back later and I walked again.
To day I had a bath I was lifted in a hoist in to the bath I did not like it too much, it hurt every wear, but a least I was clean. To day I walked on my own with someone on each side still very wobbly, I could now if I wanted go to toilet with someone by my side. I still felt very weak my body hurt so much.
By now I was feeling very low and tear full, I asked one of the nurses if she would come and talk to me; she said she would later.
As there were a few problems in other parts of the ward, tablets were late so the nurses were a bit stressed.
When my tabs were given to me my light was put on by a male nurse, another came back & told me off for leaving it on as it would up set the others, they had bean asleep hours, that's one thing they did do, was sleep at night thankfully.
I could not turn it off myself as it had bean turned on at the wall and did not work by the buzzer.
I put my Ipod on for the night ,the same nurse came past and said you will not get to sleep like that, I told her I did not sleep much, I had insomnia, off she went again.
Later on I needed some Oxynorm for the pain so I buzzed for the nurse, the male one came he was very nice. He and another came back with it I asked if there was somebody I could talk to; he said no, they were all busy.
In the morning I asked the same nurse from last night if she would take me to the toilet she said soon. She turned her head and said to her colleague she can wait,
I thought what have I done to up set her. In the other ward I was know to some as the quiet one in the corner, I hardly ever bothered them apart from pain relief.
I asked another nurse to take me to the toilet.
The doctors came round and said I could go home today, thank you. I had to take it easy, they thought it was my fibromyalgia, as much as my RSD, flaring up and it would calm down with rest.
I was still upset and decided to talk to a nurse that seamed nice, she sat down but was called away before I could really talk much, promising to come back ,she got busy and looked across and said I will be there soon I am on all day, this lifted me a bit. To give me and her more time to talk I asked her to ring Paul to pick me up me later.
Dinner came and went I still had no appetite. I asked where this nurse was and was told she was not on the ward this afternoon. I said she was coming to talk to me,she just looked at me I said is there any one I can talk to she said we are very busy, I said OK. I felt very let down.
Before I left I went to the toilet and saw the lady who I had not really seen before, I said I was home today. She said tomorrow thank god, she too had not had the best time in that ward. If I had know she was there I would asked to be moved at least I would have had some one to talk to.
Paul came and I got ready to go home I said my goodbyes, and left happy to be going.
I was in that ward for 4 days of hell, a total of 2 weeks 1 day in hospital.
I kept sane if that is the word by listening to radio by day Ipod at night, till I fell asleep.
This track kept coming on the radio it about summed it all up.
FIX YOU BY COLD PLAY
When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
When the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse
Lights will guide you home
And ignite your bones
And I will try to fix you
High up above or down below
When you're too in love to let it go
If you never try you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you
I am sure if I would have had my tabs when I needed them the pain would have not got out of control, & I would not have to endure this 2 weeks of pain and suffering.
I think I would have bean in a few days at the most. It will probably take weeks to recover from this & we go on holiday in 2 days...we will have to see.
I know the patients in the last ward were not to blame, I had been put in the wrong ward. I am sure I could have been treated better than that, specially moving at 3am,
a letter of complaint has bean sent and they are dealing with it, what that means I am not too sure.
While I was in hospital my tabs went from 14 a day to 37-40 a day. Plus OXYNORM.
I had worked so hard to get them down to the minimum. Some of the tabs I received might not be in the right order but they are all there.
I came home on 33 tabs.
When I was home I needed some with me to help me walk as I was still not too good on my feet all so help up the stairs.
A lot is probably the extra tabs I have bean on and the pain my body has bean through, but it will get better as time goes on.
Went to see him on Friday. He took me off few tabs PARACETAMOL and DIHYDROCODEINE.
at my request. Try to get back as you were, he said, all so I have stopped PROPANTHELINE [for sweating] to see what happens.
He said go on your holiday and try to rest as much as possible and use your wheelchair(!) as much as possible.
I hope people you read this can under stand that RSD is not a thing to upset as it does not like it, those of you with RSD will already know.
Well bye for now, write soon, with holiday week, take care.
9th - 20th July
Wietse came out to get me and asked how I felt, I said a bit light headed & spaced out - he said I looked it. I told him what happened on the bus. I got on to the table and he started to put the needles in as usual, no problems with that, then he started to massage my foot as usual still no problems.
As he carried on we were both talking,asking how I had bean, I said I had a few good days, he said that was a lot better then. I suddenly started to get hot I asked Wietse to sit me back a bit he did, but it did no good. He got the needles out and layed me flat, I think I passed out. When I came round I felt very hot and had real bad head, he put a fan on me and told me to rest.
As I lay there I started to rench and my throat was very tight, Michelle got me a bin/bucket, I was not sick or really felt it, but continued to rench.
Not too sure what happened after this as was I think was out of it much of the time,
some thing about a biscuit, water and a head massage. I started to feel very cold Wietse put my jacket over me and told me to rest.
I think I had a sleep, more renching, still bad head Wietse asked if I wanted to phone Paul I said no I will be all right soon. The next thing I remember was some thing about blue lips and stats low. An ambulance had been called, a oxygen mask was put on me, I had not even objected to the ambulance I did not even know one had bean called.
At hospital I was put in to a cubicle, Paul was there somebody had called him.
I started to rench continuously and my body had gone into spasm's. I could not breath it felt like I had a rolled up sock in my throat it was very tight and dry.
I was on a stats monitor, I kept going blue,this continued for a long time I was in and out of consciousness most of the time. A drip was put in for fluids.
Andrew my son arrived.
I think I was having spasm's of my throat as they were like the ones I have though out my body squeezing then letting go continually. Most of the nurses were very kind, one told me I was hyperventilating, The others told Paul I was not I could not breathe let a lone breathe fast. I was admitted over night for observation.
I was in a lot of pain by now it was about 6-7 pm. I had missed my dinner time tabs, to keep the pain under control. I asked when I would get them was told after a doctor had seen me. The doc came and asked me lot of questions and did some tests.
I asked her about tabs she said as soon as they are written up I explained RSD was a chronic pain condition she did not know any thing about it.[ The tabs were on my bed]
By now it was getting time for my next lot of tabs 10pm ish. I was moved to a short stay ward. I asked again for my tabs and was told as soon as they are written up, by now I was in unbearable pain the spasms were though out my body.
I started gagging again and was put on my side with an oxygen mask on. I layed on my side in lot of pain gagging the pain was off the scale. My drip had stopped working.
I thought here I am layed on my side with a mask on, gagging if I was sick I would choke. I was left like that for a long time.
I buzzed again asking for tabs she said when written up, I had seen the doc hours earlier,it was now 3-4am. She tucked the sheet in and pushed the cupboard near me so I did not fall out bed and told me to stop being silly. Again I was left with the mask on,renching and in unstop able pain very much out of control.
Again I buzzed she asked what did I want, I pleaded for tabs she said. not written up yet, I told her it was a chronic pain condition. She asked which ones do I need the most and got me them. They did little good the pain had gone too far.It was about 24 hours since I had my last lot of tabs. I kept asking them to put me out to give my body time to rest , they said they could not do that. The drip was still not working every body came and said I will get that sorted but no one did.
By now the day staff were on and the docs came round, they did the same tests they did before all so they said they would sort the drip, I asked about pain they said they would get the pain clinic to look at me.
They seamed more bothered about 5 large blisters on my left arm and later took samples for the lab.
All so I asked about a bed cradle to stop the sheet from touching my foot they said it would be sorted.
I got my usual tabs but they did little good the pain was well out of control.
They upped my tabs plus 8 PARACETAMOL and 4 CODEINE a day.
The drip was sorted as it had come apart, when that bag had finished another bag was put up, potassium. When I tryed to drink, it kept coming out my mouth or nose, my throat seamed to be very tight and sore.
Pain team came & saw what I was like and put me on 3 DIAZEPAN and 3 DIHYDROCODEINE a day as well as my others. The pain was like electric shocks shooting through my body, lifting me off the bed with so much pain. They all so got me a bed cradle (to keep the sheets off my foot).
I started eating a bit on Monday 14TH but was not that bothered about food.
The days passed by,the pain continued,I was higher than a kite seeing pretty colours of red,orange and yellow. Every thing seamed to be in slow motion I knew what people said but could not respond most of the time. People came to see me but I could not remember much of it. They said I looked so spaced out, far worse than Amy Winehouse [that's bad].
Pain team came to see me again and put me on OXYNORM when I needed it.
I had bean in hospital 9 days.[Friday 18TH]
Some time over the weekend I think I was taken off DIAZEPAN.
The pain was so bad on the Saturday night that early on Sunday 20th about 1AM I buzzed the nurse she said she would get me some OXYNORM, half a hour later I buzzed again she said soon, I was crying with the pain.
The tabs were in my bed side locker but I could not get to them.
I buzzed again and again pleaded, yes, pleaded, with her, I was in so much pain I wanted to die.
You are in hospital and you have to plead for pain relief, that not right is it?
She said she would get me some OXYNORM.
At 3AM the nurses came I said thank god, but no, they had come to move me to another ward. I cried and cried, what about the pain relief, they said you will get it in your next ward the porter is here.
When I got to the next ward the nurse saw how much pain I was in and gave me it straight away she was very kind and sat with me for awhile, I was so up set.
As I lay there for the rest of the night I looked around it seamed a quiet ward there was a old lady opposite me and every body seamed to be asleep.
By now it was Sunday morning and the day staff were on.
Part 1- THE GOOD - 6Th -8Th July
I have bean having a few good days. Yes, good days; not too many bad spasms, pain levels 4-5, have even bean able to reduce tablets, most days taking 14( and vit c, cod liver oil & gingko biloba) some times with a bit extra, for pain mostly ibuprofen.
Went to running club on my bike, went round with the faster runners, on road for a while then, off road round the lakes it was a nice summer night, I had on my new cycle shorts, which make you feel like you have a nappy on, and walk like John Wayne, but saying that I did not feel saddle sore after the ride.
That night I biked around 13-14 miles about 10 miles peddling, the rest electric,
I felt really good, for the first time at the club on my bike, I felt I actually belonged, not just a spare part, it is nice to be part of something that is not RSD treatment related in any way.
When I got home I still felt good, in fact I was buzzing
I still did not sleep any better though.
The next day no more pain than usual.
Physio to day 11.30
Went as all ways to get my first bus,it was early for a change so I got into town, well in time for my next bus about, 15 min, so I leaned against the wall and waited.
When the bus came, I walked towards it and said hello to the driver [its the same one every week with p.c coaches] and felt very light headed so I held on to the bus, driver asked me if I was OK, I said how I felt, he said sit down, then we were off.
After a few Minutes I felt all right again.
On arriving at physio and standing up I felt light headed again but not as bad as before
Driver asked me if I was OK and said see you later, I said good bye, and started to walk to physio.
It has now bean nearly 6 weeks since I came off MST Morphine ,the diarrhoea has now gone & has bean replaced with a lot more pain, but as the days go by this gets a bit less.
Have bean very tired as well as still not getting much sleep, average 4/5 hours broken sleep a night. The less I get, the less, I seem to need, but some nights it is worse than other, Maggie Thatcher did it, so can I [she used to seep 4-5 hours a night, cat napping when she could]
The sweating is still on going not so bad during the day but hell at night, started taking pro banthine again as it helps with sweating [ stopped because of with drawl]. the spasm's also are still here, I sneezed one day my head flew back and refused to move it really hurt, after few minutes massaging the neck it eased back, it hurt for the rest of the day.
My doctor has changed my muscle tablets from baclofen to zanflex to see if it is any better, but I need to come off baclofen slowly first [as it can cause fits if too fast] I have a few more days to go hopefully it will be better.
A lot of days it is hard to think straight and things take longer to do. I have had a lot of trouble with bad stomach pain, tight gripping ones, probably from all the strong tablets I take, so I have bean put on omepprazoleone one a day,it seams to be working well.
Physio is much the same, Wietse did some detoxing by putting needles into my scalp he said it made pretty patterns, it hurt when they went in, but after that it was bearable.
Still having needles in hands,neck,ears one in forehead to calm me down, sometimes shoulders and legs.
Wietse has bean working on my RSD foot massaging and bending it, the foot fights back by spasming up as soon as he touches it. The pain is so bad, a lot of time he has to stop and just hold it.
I sweat like mad and feel dizzy and sick.
You may ask why I let him do this, because it helps believe it or not, the next day it usually swells up & can be bruised, but or few days later it feels a bit like a foot again.
The foot still remains ice cold most of the time but can be red hot and burning, some times all at the same time, all so can be very colour full, blue, red, white, depending weather the foot is cold or hot..
I have not bean with the running club much as not felt up to it, but went last week not too sure if I enjoy it, or just crave something that is not RSD related, but biking is not the same thrill as running not even close, it is nice to see some of the older members plus the new ones of course.
The place where I fell has now bean filled in , pity they did not think of it sooner.
I wore my running shoes for the first time since I fell, they had bean put away for when I returned to running.
All the good memories came back in one giant wave, tears and frustration welled up, thinking if only.
If any of you do a sport or something you love make the most of it you never know how long you have it for !!
I am fed up with the constipation, head aches, bad stomach, not being 'with it' most of the time.
I don't know how I will cope but am going to give a good try. I know I am a addict as I have bean on them for over 3 years taking more than a 100 mg a day plus Oromorph.
Last tablet taken 13Th May - 20 mg
I have bean taking less and less over the last 6 months trying not to take too much Oromorph, so the time is right I told doc and physio they both said go for it.
This is my day to day account.
Fine in morning, by night very bad head, slight ache feeling (2 Ibruprofen for head ache 400mg each prescribed). Stomach a bit unsettled.
I woke up 6am (I didn't go to bed till 3 am) and felt like I had fallen out the window and bean put back in to bed, really bad head body ached. I stood up and started shaking, sweating and shivering all at the same time, diarrhoea, feeling sick, my heart was pounding very fast, I thought it would break through my chest. My RSD side is going crazy with pain.
Later in the day I started getting bad spasms in my legs.also I started feeling sick and not wanting food of any sort, vision not too good, took more Ibruprofen. Bones feel like some one is drilling into them. More Ibruprofen spent most of the night early morning on settee going to bed at 5am.
Same pains in body and head diarrhoea, very cold goose bumps sneezing a lot, sweating and shaking. When anybody speaks to me I find it hard to make sense of what they are saying.
To day is RACE FOR LIFE DAY I decided to still do it as was not walking far 1 mile max.
Feeling very weak probably from lack of food, very very cold to day but still sweating, can not get any wear near warm, big goose bumps all over body,every wear hurts, still diarrhoea and fast heart rate.
After the race very tired and even colder (it was cold day) pm. Feel really bad have I made the right decision ??? I went to bed early 1- 45 earliest for a long time and I actually slept for a few hours.
Feels like I am in ice, feet in foot warmer blanket wrapped round me still ice cold, even put heating on Diarrhoea a bit better.
Diarrhoea back with vengeance, it seams if I don't eat, I don't get Diarrhoea, heart rate now near normal, but must try to eat something as I loosing weight and feeling more weak as each day comes.
Ate a meal today I though stomach would explode, felt very nauseous but was not sick. Diarrhoea seems to be going. I am not aching as much and feel a bit more 'with it'.
Woke in night with very bad spasms in left leg (good side) my toes curled up and would not go down very pain full. All that day both legs hurt and tried to spasm up. Not as cold too day head ache just about gone, body pain better than last few days. More Ibruprofen, at this rate I will be addicted to them.
Feeling a lot better pain bearable, sweating/cold much improved also getting my appetite back.
I have made it, I think, the pain has eased a bit, all so the sweats/cold seam to be getting back to normal the sneezing is better. I feel more like my self now. This has been very hard thing to do but I was determined to try, some days I nearly reached for morphine but over came this, telling myself you can't go on taking more and more power full drugs, it is screwing up my life.
Before I started this withdraw I was having days of sweating and I think my body was asking for more morphine as I had cut it down a lot . The RSD and other pain conditions have bean at there worse this last two weeks but I fought back and won. I have lost weight and sweated buckets felt like shit and bean in more than usual pain but have now come through the worst. I came off morphine about 2 years ago but had to go back on it as was diagnosed with Fibromygelia so did not suffer as much.
If this helps any body else, who wants to get off morphine I am pleased, but don't expect a easy ride. It is not... I can see why drug addicts go back on it.
All the best to every body.
The day was cold with a threat of rain , the start was delayed by 3/4 of a hour, as usual.
I had begun to turn blue, literally, we did the warm up, well I did the best I could , then we went to the start line.
The horn went, we were off, I was told I could walk about a mile by Wietse, [physio] and the spies would be out checking.
I walked the first 1km slowly, with a lot of shoulder pain, most people were over taking us. Then I rode in the wheelchair, Bev went very fast and caught up with most that had passed us earlier.
Lincoln and District were marshaling, so we had plenty of support and comments, I rode for about 3 + km then walked the rest . We finished in 55 min 30 sec, we thought we did very well.
Thank you Bev.
We were given a medal, a goody bag with various toiletries and other bits, all so the rain held off, so nobody got wet, just cold..
About 4000 ladies/girls took part, all remembering past and present loved ones that have been affected by cancer. I think most of them enjoyed having a chance to do something for such a cause, including me.
Having a lot of cold and hot spots still getting spasms but not as bad as be for, mostly in neck causing my head to tilt on one side and giving me bad head aches, all so spasms in legs. Have not had a bad full body one for about a week. Night time sweats have bean worse lately, I wake up sweating like mad but shaking with cold very strange, could this be any thing to do with the warmer weather must ask wietse.
Went back to running club [LDR ] with the beginners.
To start with we went down Station Rd this is where it all began nearly 4 years ago [ when I fell and got RSD] I felt very sick and not too sure I wanted to go on, but I over came the nerves and peddled on, the run was OK but felt very strange, mixed feelings beaning on a bike instead of running,was weird.
Weiste put needles in hands and ears hands were very pain full and hurt going in and out ears OK.
They still hurt a week later,I kept dropping things more than usual electric shocks and hand felt like foam told Wietse ,the next session he only put needles in my ears.
The big news, he was able to massage my RSD foot it hurt, but I was able to stand it, my foot tried to spasm up, but he kept on massaging it, by the time he had finished, I felt very hot and sick. I sat for a while he asked me if I was all right, I said fair, no physio next week as Wistse is away.He said see you in 2 weeks be good.
The next day a big bruise came up on my foot it felt very tender & sore.
After a few days my foot felt a lot better not as stiff and swollen so he might have done some good, lets hope so.
Lincoln to Bardny bike ride May 4th [for Phillip ]
I said I would do a bike ride to raise money for the MS, this is where I have my tank sessions[.On hold at the moment],I only decided the night before to do it, as the last few day have not bean so good..
I biked to the start and was told it was approx 18 /19 miles round trip,we all set off along the bike path which was very nice no cars, on the way we saw 2 large metal cows and a giant fish [this is all before the pub] and lots of wild life. we reached Bardny and went to the pub for dinner and half a shandy my legs ached a bit. After a rest we started the ride back it seamed a lot easier going back, lots to see on the way back all so, a very nice ride the weather was lovely. We arrived back in Lincoln very tired but pleased I had biked about 22.5 miles in total [inc ride there and pub detour] was really pleased with my self no electrics all peddling.
RSD 0 Gill 1
For a few days after I ached but not too bad. You hurt if you do nothing so you might as well hurt for a reason, shoulders hurt the most along with my foot. No pain no gain [Mark].
Another session went with the fast group to night found it better was able to keep peddling at there pace it went very well.We went round one of the parks Whisby it was a warm night I really enjoyed it, all so there were more people I knew.
That night I peddled nearly 14 miles no electrics all Gill power.
RSD 0 Gill 2
Another mixed month of pain but I am fighting back.
Next time I will have hope fully done the race for life on foot and wheelchair with my sister in law Bev wish me luck bye till then keep well .hat about bring this part to an end
My oldest son Wayne came down from Halifax for Easter to stop for a few days ,while he was here we up dated the computer, as he works with them, what takes me a hour ,he does in minutes , helps a great deal.
We all went for a meal, husband[Paul] both sons,[Wayne,Andrew, daughter Lindsay & grandsons Jay-Jay & Tommy-Lee it was very nice we all went to the big wok in Lincoln for a very large meal bigger for some than others[Paul]
All too soon it was time to say good bye to Wayne and off he went back to Halifax till next time.
Went to watch Lincoln 10km , met Russ [running mate] and his two children there ,all so Crissie from the running club.
Watched the race from Bailgate for a while with Crissie then moved on to Castle square area with Russ.
The day was lovely sun sinning ,blue sky ,not too cold ,saw a lot of my past running mates, made me want to join in if only I could.
After the race we started to walk to the Queen Vic to meet some of the other runners/partners,
but the more we walked the more pain I was in, encouraged by Russ we finely made it I felt really bad, took some morphine and rested in the pub garden for a while, the pain settled down.
Russ had to go so I went in side to the others, running people and partners had a cup of tea & a catch up on every thing that had bean going on at races and training , then Ross gave me a lift home.
The next day I started with another cold probably why I felt so bad at the 10km.
Woke early hours of morning to very pain full leg spasms in my good leg manged to get rid of it , the next day all behind my knee had bruised very badly and gone hard, I though I had burst a vein the doc confirmed this a few days later. a varicose one and gave me cream to help the bruising , very sore hobbling on both legs now.it has taken a week for it to improve at all, but is now much better but still very bruised and spread out more.
Have now received number for race for life it looks like it all on now, so that gives me something to look forward to for a change all so the club are marshaling it so should have some good support. I shall hope to walk a lot of it but my chair is going too
Hope to come back to club on bike very soon, just waiting for leg to improve a bit more.
hope you all all good and finding this blog interesting if not find another one, if you are, keep coming back thank you.
We [Sister in law husband and of course me] set off round the field it was very windy.
A lady was doing the mile backwards in a very big cape I thought she would take off, but she did not, and finished the mile.
A nice surprise at the end we got a goody bag with raisins, drink and a book .
All so Paul bought me a T shirt.
It was a good day I enjoyed it.
I can honestly say it was the slowest mile I have ever done , 25 Min's no problems going round or after .
I am hopping to do the race for life next month as it is 3 miles, I will need to take the wheelchair but don't plan on using it too much it all depends on the day and how I feel.
well here I am to update again.
Tank much the same, missed a few because of a cold .
Wietse has all so bean ill so have not have physio for 4 weeks i think it had a bad effect on me as I have had a lot of extra pain so much doc had to up tablets.
The burning continues in my foot reaching a lot of time past my knee, I wore winter tights for a few days and legs seamed very sensitive and hot but felt cold to the touch, very pain full at times My shoulders and wrists are about the same as before.
I think the RSD has entered another level as things have bean a bit different, or is it just the weather.
Back at physio now Wietse did usual acue all so, something different with a pen like thing, on my foot and up to my knee .I asked him what it was he said it was not acue pressure, not acue, I said it must be a wietse Special .I know it hurt.
At last I took to the roads for quite a long bike ride (sat 8th ) to Skellingthorpe not the best day to choose as it was very windy .
I went down Dixon Street ( a Street very close to me) a bus came past and I nearly Sh** myself
but I got there safely and back without getting lost I think its a 10 mile round trip so I was very pleased. I peddled a bit and used the electrics its goes pretty fast with a back wind and not bad with a head wind.
I did not seam to suffer any after effects in fact I think it helped loosen my muscles.
I watched a film the other night called The Brave One staring Jodie Foster she had bean through a lot to say the least and was asked how she coped, she said you become somebody else ,
I think that is what I have done
I have entered The Sports Relief Mile walk this weekend with my sister in law so I will let you know how I get on really looking forward to it well bye till next time.
Running club awards, felt really bad went bowling very high on extra morphine could hardly see the skittles felt better as the night went on. I looked and felt like Amy Winehouse but without the hair.
Spasms seem to have got a lot better also shoulder and arm not as tight, so a lot less painful.
Foot is going crazy with parts cold and some hot still giving way a lot.
Wietse has started to massage my foot very gently still having acue also Michelle massages wrist and hand.
Doctor has upped gabapentin to help with nerve pain and tingling in right side of body.
Went to doc on bike, a bit scary but with more use it will get better then will be back at running club without running anybody over.
Over all I feel a lot better than the last post hope this is the start of a better year..
I begin the year with pain [whats new ]lot of spasms in hands legs and feet, wrist still painful. Not much else going on.
Started to get full body spasm's starting in the night usually with the right foot very, very painful leaves you feeling like you have bean run over by a bus.
Wietse did gentle massage on my right foot, and acu on neck, left leg and left foot also massage on wrist, he said spasm's are probably due to pressure changes.
Saw doc today doubled beclofene [muscle relaxer] stopped serk 8,[middle ear dizzy] hope this works.
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