willows

Thank you all for your kind words and thoughts for Mike on this awful matter. The police have been around again and still they cannot do anything to the 3 lads that caused it all or the 2 adults who beat my son , the whole village has closed up on them and its only us who are willing to speak , probably because we work so closely with some of the higher ranked police officers in the force with my charity events and who all know Mike as he to works works with them. I had to take Mike to see the doctor today , he didn't go into college , but I did , set the record straight with the vice principle , head of that department , college complaints section , head of the course he's on and everyone of the PT instructors these lads have contact with . I found out further information concerning what this was all about last night , apparently the 3 lads who caused all the trouble and the 3 lads that they attacked are all at Mikes college as is one of the adults who attacked my son . The college is now aware that they may have a war on there hands if this lot kick off again and as I said its better that they are aware then just think its some boys fall out , because fall out it is not . Mikes not right , he didn't want to shave or do anything much today , what didn't help was he had to finish a piece of course work entitled ' crime and its victims ' ................just what you want to read about when your face is all swollen and you hurting all over . But it was something else as well, he kept doing this strange laugh when you tried to speak to him and his eyes going wide then his eyes darting from side to side very fast ...........he wouldnt give eye contact at one point and walked around with his head down , he's still white if not slightly jaundice colour . Mark , Doc and I think that all that happened to me in the past has come back to him and he's suddenly gone into real big time shock and some form of depression , he's just not my mike at the minute . The doc has said keep him off this week and if he gets worse or does anything really strange get him to her at once , but let him rest ,sleep or do anything that you think he needs to do and if he wants and you can , take him out of Plymouth for a days outing ( if he's well enough) make him think of other things ......christmas may be ??? So all the people who have caused the trouble are getting away with it , not a scratch on them and I saw them at college today laughing away at people and actually heard them boast to someone ' got the kids at the weekend' and my son who works so hard for my charity , helps both Mark and I when ill , and is doing so well at college that his head of course is over the moon with his work and his 100% giving it all , well he's battered , broken , bruised , scared of everything the phone ringing , door bell going and I just dont know what to do , we let him talk when he wants to and we both are just there when he wants anything , thats all we can do and hope that he just comes out of this soon , I just want my son back again. I AM SO ANGRY....................Ami.

I'm sure by now you all know what sort of a family we are , Mark ,my disabled 'one handed ' husband who's just a crazy caring man does the photography for my charity , when his head, feet or neck isn't bringing him down with pain. Mike my 16 year old son , who as you may recall is now showing signs of POTS and has been unwell since he was 4 years old , also works for my charity , he's my Youth Event manager and has been working with me for 8 years. He has never had an enemy in his life , he's very much like me , laid back , always happy , always smiling 'what ever' and a good friend to all . We have never heard a bad word about him , in fact people come up to me and say how much they admire Mike and hope that there sons turn out to be like him , he is a credit to my family and I am so proud of him . I haven't been on lately as Corina knows , I've been very unwell and struggling , but still working from my bed on a sponsorship deal for my charity that will bring in ?120,000 the first year ?250,000 the second year and then .........the skies the limit , and yes, I have finished all the work on this and signed , sealed and GOT IT as well as this I've put together some small fundraising events to bring some publicity to my charity over the next two weeks or so . One such event is an abseil from a department store in Plymouth by 15 young people from my sons college , and it is three of these young men who have caused so much pain, angry and upset in our village over the past 24-48 hours that I am writing about , no names ..............but a story that will dismay you and make any mother reading this thank god that her lad is safe tonight. As a gesture to the group abseiling for me I asked half of them this weekend and half next weekend to come and spend the weekend with us at our home , we put up a huge 12 man tent on the back field for them to stay in , but all meals where here in the house with us , and boy , oh. boy had I cooked some meals for them in readiness; Lasagna , a HUGE 6 kilo boneless leg of pork for a roast Sunday dinner , turkey in peppercorn sauce, lemon meringue pies, apple sponge pudding ...........enough to feed an army let alone 8 teenage boys and girls. As well as this , having talked about it with Mark we got in a case of 24 lagers ( weakest ones we could find ) and a huge bottle of fizzy white wine the sort that girls like thats sweet and more like lemonade then alcohol , if there's more than 0.05% in it ! Mark was taking them all fishing on our river and doing some real survival techniques with them , thats what Marks trained in , all sorts of survival things like : animal tracking , shelter building , security around your camp ..........all the sorts of things lads and girls love at this age , and are doing at the college , but Marks training takes it a bit further. We had arranged for the three girls of the group to come this weekend and four of the boys , pick up time and gear sorted by me and all I had to do was collect all the fishing rods, sleeping bags and rucksacks from Plymouth in the car while the seven plus Mike came back home to ours on the bus .................seems fair ? They where to stay from Friday afternoon until Sunday evening ...........yep, thats today ...............no one here now. This is how Mike my son came to be kicked in the head and now has : a cracked nose , black & swollen eye , cuts to the face , forehead and neck and a huge raised area at the back of his right thigh. This is why he's shaken up so badly he's quiet , pale , withdrawn and tearful . He's been sitting in bed with me all wrapped up in a huge fluffy dressing gown watching TV and I've been just talking to him quietly trying to get his head straight over the matter . By Saturday Morning 'Sherlock ' as I'm now know to the police had picked the three lads brains who masterminded this awful event , found there homes ,discovered the 'false names '............yes, false names , they had given the police and pieces together what was truth and what was 100 outright lies . As well as this I found the names and addresses of the two ADULTS who had attacked Mike and who would , with an army of other village thugs have taken on Mark my one handed husband who came to Mikes rescue when he called home screaming down the phone he was being beaten and they where chasing him in a car...................you can imagine how my heart went into over drive and I started to vomit , go dizzy , sweat and panic , being left alone , Mark driving to rescue Mike from another beating and possible suffer himself and me wondering of anyone would come here in the meantime . SO HOW DID THIS HAPPEN AND WHY ? The weekend 8 turned out to be just the three who caused the mess Mikes in , they managed to stop the others coming .........they lied to them all . I picked up there stuff on Friday afternoon as prearranged and as there was only three lads collected them as well , I thought it strange that as they where going fishing they only had one rod. At home got all the sleeping stuff sorted and at abut 6 had dinner , all together as normal , yet one said he couldnt eat and was nervous you could see it in his face , but I put this down to them being here in our house . As I said I'd left a box of beers for the 8 ( now 4 ) to have a couple each evening with dinner , at Fridays dinner they each had two beers ( Mike only 1/2 can ) Mark and I got on with our evening things and the 4 lads ( thats including Mike all the time now ) watched a DVD . At 8 pm the tallest one said he wanted to go fishing ..... .....in the pitch black off a pontoon thats unstable and with fast waters around it , I dont think so , not only that BUT none of the three lads who came could tackle up a rod , which had bells going off in my head . So they went down to the village instead( 3 mins away ) and bought some biscuits and some gum, came home and watched some TV because at 5 am on Saturday morning they had arrange to all go fishing with Mark ................at this point Mark left them going into the tent behind us and Mark came to bed ......................Ah ................ There are three lads plus Mike . Mike is M. Tallest lad 1. middle lad 2. smallest lad 3. About 3/4 of an hour later as Mark was coming upstairs the phone went .............Mark answered it and it was at this point all h*** let loose . All I heard was mark shouting at me , he then got his jumper on and shoes grabbed his stick and rushed out of the house throwing the phone at me saying 'speak to him , tell him to get up the road , I'm coming' this is what happened to Mike . In the tent the 1 lad said he didn't want to sleep so lets go for a walk around the village as he hadn't seen it yet ( pitch black outside now ) M not wanting to be a wimp so said OK , when the 3 lads arrived they had said they didn't know our village , had never been here before and didn't know anyone who lived in or near the village , this was just complete lies . Instead of walking in our village , they walked across the river to the other village to us , walked into the village square and at this point 2 lad disappeared . Five minutes later as M was looking around for him 2 appeared running like mad shouting run .........and of course all 4 lads ran , they came to the slipway in front of the river and 2 girls came from the direction lad 2 had come from , these 2 girls M knows , so he started to talk to them, 4 other village lads arrived and then another 5 and another 4 surrounding all 4 from our house . Then lad 1 suddenly moved and knocked down /out three of the village lads behind him and ran like a coward . M didn't know what was going on as the other 2 lads ran off leaving M standing there ........one of our village lads took a swing at my son , he then turned to run . He said afterwards I just didn't know what was going on , what to do or what I'd supposed to have done as everyone as screaming at me and cars where starting up and I didn't know where to go ...............as he sat in the lounge telling me this covered in blood with the police watching he as shaking and crying and it was all I could do not to just grab him and rock him on my arms , he was in such a state of shock and I was helpless , but the police knew , they knew Mike had been stitched up , but not how or why . My son having run about 10 was tackled to the ground backwards over a low wall , as he fell he hit his leg and has damaged it , while on the ground and M shouting out ' what have I done , what have I done ..........and I dont understand why you are doing this time , you know me ' the two males attacked mike . I will not write here what they did because it is distressing , but I have forensic evidence to link them to my sons injuries. As these two cowards turned to call for reinforcements my son managed crawl away and hide in a garden of an elderly lady we know , he then got out of the back of her garden and started to jog/walk towards the road calling Dad on his phone ( my hubby ) for help , which is where I came on to the phone . The 2 men who attacked my son had by then got into a car with 3 others and where driving after hi, , Mark was driving from the other way and got to him first , shoved him in the car and then took him back to the village square where it all started . As this is so long I'll try now to give you a short version of events that followed: The 3 lads who came to stay DID know our village . T had had a fight with two of a family here and been injured because of the sister of this family , T had been in the wrong . So T arranged with the other two lads that they would make up my abseiling team and then worm there way into our house/village which is why they didn't want the girls or other lads to come this weekend . After I had called the police to come here NOW and explained that my son was hurt and my husband was in the middle of a group of 40 + village lads who had surrounded him all wanting my son from out of the car and his 3 mates to 'deal with' , so while I was waiting I went into the tent and found that all crate of beers had been drunk ( mike still only 1 can in total ) and a good couple of 2 x litre bottle of strong cider , which means in my books they where getting courage for something . Lad 2 had gone to the house of the family whose sons had attacked lad 1 , opened their front door gone in and grabbed /pushed a small child then run out again...........back to my son and the other 2 lads in the square. Basically he as calling them out . But what he didn't know as that our village has a huge network of people who if called for any reason be it things like this or a boat getting stuck , Cliff rescue , snow drifts ..........all come out to help . When the lads surrounded my son and these lads my son was taken as the ring leaded who brought them to the village , which he was not . So my son being who he is and knowing how to behave ,apologised to the mother of the family for unknowingly bring these lads to the village , Mark backed him up and they came back to me . The police , who know Mike from charity work we do with them where so worried about him and checked him over for me , they are going to arrest the two lads for attacking him when I call with anymore details I can . About an hour later the other 3 came back , they had run off leaving Mike to take the beating and hidden in the woods until all had gone quiet . They gave false names & addresses to the police ( which we didnt know at the time ) and came up with a story that was so much of a 'fairytale ' I felt quite sorry for............their parents. Mark wanted to throw them all out into the night , I didn't ..............OH, NO , I had Mike upstairs away from then , washed and dressed his cuts and sorted his bruises and wounds, then locked all three of them in the back room with sleeping stuff for the night . In the morning I just carried on as normal , not letting them speak to Mike or see him . I gave them all breakfast and then took them home . All the time I was doing the 'mummy talk' and the OH , dear how awful and letting them slowly but surely 'spill the beans' without knowing it , boys have to brag about things , they let things slip , repeated the story wrong , muddled things up .............and I logged it all , sorted and stored it and now I have the full story ............. lad 1 came here with his 2 mates to attack the two lads from the family that had done it to him months before .............dragging my son, my family and the village in as well. On Monday, now I know all the story I am going back to the police to give the real names and addresses of the lads who where here , tell them what really happened and give them the names and addresses of the people involved as well as the names of the two men who attacked my son . These two men have two options now because later today I am going to there homes to speak to them both , face to face , I'm not afraid of them at all , but when I've finished I think they will be of me . They can either come to the house and from the garden both apologise to my son in full, saying that they now know the real story and that Mike has done nothing wrong and that they are truly sorry for what happened and that they will make it known that Mike is innocent in all this within the village and beyond . OR As Mike is a minor in law I will give their names and addresses plus the forensic evidence I have that links them to my son to the police , have them both arrested for actual bodily harm to a minor and then have my own solicitor in London start a private action against them both for ABH and sue them for compensation of ?50,00 each for the injuries, pain and shock that Mikes till going through . I am also seeing the principle of the college to ask that all three lads who came here are suspended following police investigations into this crime and that they should be permanently removed from the course and the college as. They are not going to work for my charity and as far as I'm concerned ever work for charity again. I feel grubby , dirty and abused by what these lads did , we took them in a friends of Mikes and they did this to us , they planned all this weeks ahead , planned the route to this other family's house and there story and left Mike to take the blame , the beating and anything else ........................I dont think so . This mum may be disabled , may be someone who appears to be crazy, fluffy , a easy touch and a push over .............dont you believe all you see , because this mum isn't the fluffy , warm cuddly type you think she is , EKKA trained to lever 1st dam , able to get anyone to talk about the things they dont want to talk about and able to remember things most people haven't seen in the first place .Worked for a private investigation company many years ago ( a mate who was in need of help ) and so still able to use techniques I was trained in . Mikes feeling better tonight , his eyes rather nasty but he's eating now , still tearful , hasn't been out of the house even into the garden and is now only allowed to with Mark or myself with him for a while . I'm devastated by this , angry , hurt , appalled and just cannot believe that lads from his won college , his won course would set up such a nice lad as my son . Mark is devastated by all this , he thinks Mike is the sun and moon in his world , and loves him to bits , he's never done anything wrong in 16 + years of his life , always been there for others , always helped with us both when we are unwell and he cannot understand why Mike . From Ami and Mark, parents of a great lad who isn't very well at this time . XXXXXXXXXXXXXXX

Yep, been there done that to . I once got up in a restaurant , Dingles in Plymouth and my balance had just gone on my right side , no reason at all just gone , so there I was stood up and started sort of leaning ....come ....walking to my right side at a very strange angle ........couldnt stop myself and my husband couldnt grab me as he has no hand on this said ..............er sort of walked , fell sideways onto the next table ...........flat onto 2 breakfasts of egg, bacon , sausages, tomatoes and baked beans ! The people at the table thought I was drunk until both my husband and the manager of the shop , who I know so very well explained I have this awful condition and sometime fall over . Must admit breakfast on a body is most embarrassing and rather messy , beans in hair thats almost to your waist are hard to pick out . ! So now when I go to get up , especially in Dingles ! I do it in bits , 1 foot up from chair, wait , 2 foot up , wait . I've staggered around all over the place , getting quite a reputation for looking drunk , whilst not having a drop of drink , have been asked before ' whatever your on I'd like some ' well mate , have a dose of POTS and then you'd not laugh so long and so loud at me

Becca ............. calm down , take a deep breath and sit yourself on a chair with a cup of coffee and stop thinking that your life is so bad that your loosing the plot , we all loose the plot at sometime with pots .............welcome to life. Yep, I know I sound angry with you ...........but I'm not just want to wake you up , shake you up and bring you back to earth . Do you or any of you really think that after 35 years ++ of this awful condition I haven't lost the plot ???? shouted , screamed , thrown things ( ooops ) and done a lot more that I am not proud of in fact ashamed of if I really sat down and thought about it , er . Look girl, you have the ear of Professor Mathias I've been written off by him , to old , to far gone to do anything with , thats me , brush her aside so that the hospitals will look good helping all the sufferers , not look bad as they cant touch me with a barge pole , and what have I done ..............nothing , so what I'm still here , laughing at life's stupidity and still smiling at the world. Go to him and apologise , sit down , look him straight in the eye's and tell him that you cant cope , that you are afraid of whats happening to you , be honest , dont try and do the 'tough girl ' with him , if you tell him the truth and as I see it , you are a young person with a lot of problems that are all mounting up and getting on top of you and blaming your condition for it , then getting angry with yourself for having the condition ...............you didn't give it to yourself , no one gave it to you , you didn't catch it .....................life happens girl and you have to make the best of what is given to you . Hey, dont get me wrong , my life is not all smiles and roses, I am in pain so bad I cant sleep , I fall , brake bones, clip bones from just opening doors or cupboards , I still sweat , still cant eat properly , cant drive at times ................but I am alive , I breath , I feel , I see good things around me and I get down on my knees and thank God for every day that I still have on this earth. YOU will find a level that is best for you with this condition , you may have up's , downs and days you think 'what am I doing' but there WILL be days that you think 'life's cool I'm doing OK' Talk to people , explain , DON'T SHOUT at them , talk in a controlled manner , and let them see the real you , that really scared person inside hiding ..............just like I was so many years ago. You can always talk to me via my home email address ( do a message to me for it ) hey , I'm up most nights sitting at the computer tapping away whiling the hours away looking at all sorts of strange things on the net and writing emails to other who like me are up and awake at unearthly hours waiting for dawns first light ...........and breakfast ! Take care , your not alone even if no one has posted on here except me , sometimes people find It hard to answer posts like this , sometimes its hard to say what you want to people , but we do all care what happens to you . Thinking of you AMI XXXXXXXXXXXX. P. S Drink you coffee or it will get cold

IF YOU WANT TO NOW ABOUT CLONIDINE READ THIS . I have been on Clonidine for about 3 years now , I take 10 X 25 micrograms tablets a day , yes , 10 tablets that's 5 tablets at night and 5 in the morning ( 1+ 1/4 tablets a day twice a day = 2 +1/2 tablets each day ) I was put onto this drug because of the following reasons . 1. It controls the amount of sweating I do 24 /4 , sweating so bad that the amount of water my body can put out exceeds the amount of water I can take in = me passing out , me getting dehydrated , me felling like I'm in the Sahara dessert. 2. It controls my blood pressure , without it I'd be sitting on the ceiling and not aware of anything around me . 3. It controls my bladder , you know the little trickles before you get to the loo, as you think of the loo and after you've been to the loo . SIDE EFFECTS. Even on this amount of drug I am on I am fine , I dont get heights and lows of blood pressure, I am not asleep all the time nor does it make me sleepy , worst luck ! I dont get skin problems , sickness , stomack troubles ............not a darn thing in fact . Sometimes I get 'used it it ' and have to ween myself down to 0 a day and then leave them off a week or more , OMG its **** on earth for me , sweats , dehydrated all the time , cant keep water in my system so headaches ,as either I'm peeing it out or sweating it out , water from every orifice of my body in the bed , chairs , clothes ...........its times like this I wish I was never born and me saying this to you, and you all knowing me for my' lunacy' and 'happy go luck attitude I have to life' , well I think you can say that this drug is OK with me . Without clonidine I would never be able to eat at all because just having a plate of food in front of me makes me sweat even now , eating hot food is **** and eating at all is very hard for me to do at times , I tend to live on child size portions and cold foods a lot and thats with the 10 a day I take , take them away and I think I'd be on a drip feed . Cant say what it will do for anyone else but this drug has been a life saver to me and without it my life is a living **** . Willows ....................Clonidine my life saver .

I was diagnosed with circulation problems long before I was diagnosed having pots , I have Raynaud's and heart problems which means not only my feet/toes go grey/blue but my hands /nails my nose and my lips if I'm very bad . Cold weather is horrible as I feel so much pain , as well as if I go onto fridges or freezers , which I only do with big insulated gloves on , hat , scarf and a scarf over my mouth , as for hot weather is just as bad for me . Like diabetics I have to be very careful with my feet and toes because sometimes they can get so cold I cannot feel them , so every night I make a point of putting speacil cream on my feet and toes to keep them soft and cut free as well as making sure my toe nails are all cut correctly . Short boots most of the time on my feet except in very hot weather , in very cold weather I just dont bother going out as the cold effects my lungs and I cannot breath properly which of course makes me pass out . I have at least 15 pairs of gloves , about 20 + hats of assorted styles and tons of scarves , as well as 10 pairs of assorted boots from short Velcro ankle ones to knee high fully lambswool lined ones . I keep a pair of boots in the car as well as a set of hat, scarf and gloves , another full set at my friends homes , and in handbags always gloves ( those small magic stretch gloves ) and always a full head, hand , neck and foot set by the front door . So far I haven't had one chilblain and my feet have kept well , my fingers have suffered somewhat and I did get a small amount of frostbite a couple of years ago , that was just so painful . So guys if you are getting pain in your fingers toes and nose be like the boy scouts ' be prepared '........thats the answer and you can't go Wong ! Willows.

Boy was I right or what . Its now Sunday and I've only just got up at 3 .45am in the morning , errrrr, so its Monday in fact . I didn't get to go and pick up the new car , hubby went and got it , I did managed to have an hours drive on Sunday morning from 11 am to 12 midday , then came home and had another angina attack + wanting to throw up + chronic contractions of the stomach, you try calling out with vomit , banging with your hands when your holding your stomach and also not fall off the bed onto the floor at the same time as trying to reach for your GTN spray .............. luckily the boys ( hubby & Son ) hearing me clattering about and banging my feet on the floor came rushing up , just at the right time ..............with a waste paper bin , my, my do they know me that well now !!!!!! So I've been stuck in bed for about a week on and off now , lost 5-6 lbs in weight and still cant eat more than about 1/2 a plate of food that you would give to a 5 year old .............a very small 5 year old at that ! I tried eating 2 of those warm french vanilla rolls , the ones that are as big as large pork sausages , managed 1 1/3 before I was unable to eat anymore , most strange , most peculiar , most helpful in a way as I need to loose a bit of weight before christmas , but this isn't quite the way I'd thought I'd do it . Well thanks for your replies , take care all , I will have great fun in the new car soon a small 4 x4 in that metalic vivid carribean blue ..............stunning . Willows.

Hello AJW, I to have heat problems and have found a great answer to going out and keeping myself cool and its quite cheap At our local chemist we can buy those menthol headache cooling pads , made from a sort of gel stuff that you stick onto your forehead when a headache is bad . Well, if you stick one or two of these on the back of your neck ................. or on your wrists .............OMG instant cool relief and they can be used time and time again. When the ones on my neck get warm , I just stick them back onto the plastic film they came on and then stick the next two on , then change around all again later , the first ones would have gone cold again by then . As long as you keep them 'just for you' well I sue mine over and over again until they die on me (1 month at around ?5 UK prices for a pack of 4-5 ( $2.50 ) these little gel pads are a made in heaven as far as I'm concerned. Willows.

Blimey , talk about............. 'give us a hand dear' or.............. 'you hold it , I'll hit it ' My right hand /wrist is just about 10% of what it was now , can't hold anything over a 1 lb in weight before it starts to fall off or out of things ................water ..............boiling , out of the kettle onto the floor , preferably not on ones feet or hows about a large mug of coffee ( very hot ) straight down the front of bosses trousers ................my goodness I didn't know he was quite so young and agile as that before now! No , not funny ...........well , it was to watch ........ but I just cannot hold anything with much weight in this hand anymore , it all just falls to the floor if I do , you name it ............its on the floor , on me or on other things I've just emailed my nice doc for help and understanding on this , asked for a better brace , suggested a cement water pipe ! but dont know if she will think this funny or not ! So, what with me painting again after 30 + years of not picking up a brush ( long story of being put down by ex-hubby over my work ) and making both Hubby and Son stand with mouths open , becuase I can actually paint ................. and never told them ???? oooooops, forgot about it ! well I'm now on a huge 3 x 2 foot canvas and my hand/wrist is making it jolly hard work , I have done one practice of styles painting so far , but this is my first real canvas for donkeys years .............called 'Hagrid's window' , when its done I will post it on my link to the photo sight for you all to see and comment on ........... So at this time I'm just strapping , unstrapping , strapping , unstrapping ................great fun , I feel like something from a a strip show ........................oooops well with my clothes on just the bandages coming and going like mad ! Hello, Hello , Hello , that's funny just caught sight of myself in a mirror ......mmmmmmmm, eye's bright pink now .......................feeling cold................strangely stiff..............WARNING , WARNING this girl is about to have a dam POTS running fast session again ......................oh , humbug off to bed and feeling like cow poo again for a couple of days , never mind new car comes on Saturday bright sapphire metallic blue 4x4 ................oooooooooh , now thats cheered a girl up a bit , about this (...............................................................) much ! Bye , bye hand now waving to you all ..................willows ............ah, nice soft squishy bed awaiting

Well having been to see the doc at the hospital the news isn't good . At last someone had the guts to own up ............ When Mark first went to see the doctors at the hospital he was told that the operations may not work , could work wonderfully or may make the pain from the problem worse , he was happy to take the 33. 1/3 chance that it would work and so went ahead with the operation. And now they are saying , 'yes , the operation did work ..........but...........unfortunately in the process of operating the surgeon made other things , things that you never had before this operation cause you pain' .................OMG. Mark was shocked, stunned, annoyed, angry, indignant ........................words just failed him , but at least this new doctor had the guts to tell him and is now suggesting yet another operation to sort out all that the first surgeon did wrong ! So good was this new doctor .................that he has said ' this is my private secretary's number , if you cannot reach me on this or I don't come back to you within 36 hours...............then you will find me in the pub in your village at the bat on certain nights and just come in and give me a nudge '!!!!..............................mmmmmmm, interesting that , hope he still has a steady hand the next morning ! Mark has now calmed down and is asking me if he should see a solicitor about all this , after all , they first said it would all go away , then the doctor who did the operation who was supposed to me there ................and Mark kept asking to see him over and over again because of the pain ..............well, he'd left just weeks after the operation on Marks foot , but the hospital had been covering his departure up .............why ? It has taken months and months of pain and suffering to get Mark this far only to be told that the operation was a success but its just that the surgeon cut something else in the effort and thats whats causeing all the pain . Watch this space , this girl is going to have a search about and see what a solicitor thinks of all this covering up stuff . Willows.

Having recovered from the cool air blowing through parts that haven't seen daylight before ............hello all again! Today Marks off to see the doctor today who has taken over from the doctor who first did the operation on his now famous foot ! Marks still on the patches that act like an anesthetic , if it wasn't for theses I think he'd have gone stark staring mad with the pain and now been in some institution having a nice holiday with lots of men in white coats looking after him I think he's due to see the man who injects his foot again soon , but we still dont quite know if they can stop the pain completely or if as I suspect Mark will have to go back in and have another operation to pull out what they think are nerves and ligaments that have somehow managed to grow into the scar ..................oooooooh , crunchy or what . So this morning its first take Mike to college as he has to be very early , then shoot up to the hospital and then back home to me , by then I may just have managed to get up , shuffle down the stairs and have had a big bowl of fresh pineapple . I'll let you know what the out come is from seeing this replacement doctor is soon . Willows .

Thanks all for the replies . My hand is not as bad as the last one , thank goodness , but I think its probably because I know what to do and how much not to do things ,this time , if that makes sense . I've started with my hip pain again today and am now stuck ever morning like a tortoise on my back unable to get up , Mike and Mark are getting quite good at getting me upright , they now know when to pull and when to stop by the 'groaning , squawking and ahhhhhhhhhhhh's I make and the loudness of my voice OH Dear , this means the cold weather is definitely on its way to the UK , so its time for the big coats , hats , gloves and scarf's to come out of hiding ..............ooooh , I forgot its furry hat and coat time ( my Chrissy present from Mark last christmas ) so thats OK by me ...........let it snow for all I care I love my furry hat and coat ! Trouble is with the cold comes this pain, its almost feels like I've been kicked in the wobbly bit of the bum by what I couldnt possibly think , unless Mark had a night of line dancing and caught me one but then if you where kicked in the bum cheeck by a 13 stone man in the middle of the night I think you'd some how notice wouldnt you ????? Nope, I recon I need my legs pulled again oh , I just love having that done ............NOT . Well a girl can't it all ways can she , nice furry hat , coat knee high leather boots , leather gloves and a big smile as I just love this outfit ...........so chic , so furry and so daft as a squirrel ............yep , just so me . And not have pain from the cold that's making her wear her nice teddy bear coat . Willows ...............body going North , mind going South !

Yep , I to have problems with the old hoover , not only do I feel sick after a few minutes but I sweat so badly that I drip water all over the bits I've just cleaned. and I get hotter and hotter and hotter , even after 2 mins of doing a bit of housework . Hubby now does 95% of it , especially if we have people round or by the time I've done the lounge I have to go and lay down for a couple of hours to get myself back to upright and my sort of normal, no we dont live in a place that huge , its just a little semi cottage with a lounge about 18 X 18 . And something else that a killer , now this is a strange one . When I go clothes shopping and am looking at say dresses or coats in a store , 9 times out of 10 they are on hangers on a rail which is about a foot over my head , so in order to see them you have to reach up slightly and push the dresses apart one at a time . OMG this just wipes me out every single time , first my arms and hands will feel heavy and start to ache and shake , then my back hurts , then I sweat and go pale , hubby's always with me and watching me when we are out , just in case he has to catch me if I get to the point I'm gonna 'kiss the floor' . Looking at things like this just wipes me out , cant think why , it just doesn't make any sense to me at all . So now hubby tried to get the things I want from the rail and hold them in front of me to see them , anything I want to see , try on or whatever , he makes sure I dont have to move or push things at all. Most strange .................willows.

I'm now getting worried as I've just gone and done my right hand/wrist in again and am now strapped to a board for about anything from 6 to 12 weeks. So far in the past few months I've had both of my hips re-aligned twice as either one or the other will drop about 1 .5 to 2 inches out of alignment to the other ...............'wibbly-wobbly walker or what' Then as you may remember I tore my right thumb of the joint whilst trying to get out of the bathroom and ended up with my poor Doctor injecting me in the base with steroids and half killing me in the process ...............OMG never again . Just recently my left elbow came out of its socket ................OMG ouch or what ..............a real screamer of a day that was and poor old hubby had to pull, twist and snap it back in for me to shut me up before I passed out on the floor . A few days later my right elbow got half way stuck ..............just a little shout at about level 'cover your ears' this time! Now .............. well now I just dont believe this, I was just innocently reaching for a large dish from the cupboard and as I got hold of it something went ..........'twang' and pain shot up my right arm . I have just come back from my friendly Doc , who although didn't mean to , inflicted vast amounts of pain to my wrist and had me talking perfectly normal one sentence then suddenly increase my level to about a 1000 decibels . yep , I've gone and torn bits of me again , this time the ligament of my Pisiform bone , so text book is it that the Doc could poke her finger right 100% in the middle of the exact place .................and have me leaving the chair in 2 second flat ( world record ????) So here I am all strapped up from my fingers to my mid arm again , pain on lifting , pulling, pushing, poking , wiggling , in fact just about every movement a girl would wish to do with her hands........... .............. so ..............is this just ME or is it as we get older ( not wiser mind you ) or is it that if we have had POTS for a certain amount of time or at a certain level .............that we just start to become this ............... 'wiggly-woggly multi- moving menagerie of mind -of -there -own bones and ligaments ' Because I just dont like this and its getting me down somewhat to say the least . I haven't slept for more than 2 -3 hours now for 10-12 days and I'm so tired I feel sick all the time and keep 'sick burping ' ...........oh, I hate that dont you , yuck !!!! If anyone out there has seen Dr Grubbs about ' loose joints or constant tearing of ligaments suddenly happening ' so much so that you dont know if your body's coming , going or just been somewhere , PLEASE I beg of you let me know what he's said as I need some help ( and so does doc ) I cannot imagine facing the next weeks , months , years constantly strapped , plastered ( alcohol free ) braced and what ever else the hospital can do to me . I'm off to bed now ( 1 .40 pm in afternoon as I cant keep my eye's open anymore , let me know if you have this to and we can form an all girl ( unless your a man obviously ) ' leaky -sqeaky multi -moving bone dancing team ' OMG ...tired or what ! Look after yourselves , just like me .................. AMI XXXXXXXXXXXX

Thank you for your replies guys , Thanks also for the suggestions , I have just finished 4 designs which are ; 1: ( Holding on to your heart pendent ) A large ruby heart with white gold and diamonds criss crossed over it . 2: (The tree of life pendent ) A gold tree with branches ,emerald leaves and ruby hearts at the end of them. 3: ( Forever in my heart ,lapel pin ) A small heart with ruby's all around and the centre is pave' pink sapphires. 4:( mummies or Daddy's little angel) A angel pendent with pave' diamond wings, pave' orange sapphire dress and white gold detailing . All are for my charity , should be at a very good price when made , are not over the top and dont look like a charity item . I for one definitely want the big heart with diamonds running over it .............possibly make the earrings as well now . Well I'd better get back to the drawing board again ............this is so much fun . Willows.

Hello all , I didn't think I was the only one with this unwanted , unkind and definitely one of the worst thing us girls have to put up with when the menopause hits , let alone before , after and as well as ............ I have had this 'complete lack of body temperature control 'for about 8 years now .............yes...... 8 years . but when its at its worst I also run a 1001 temperature with it , no , not unwell just white as a sheet and flowing like a river .............. I am on clonidine ( 10 daily ) to help control it , sometime they work brilliantly , and other time when my pots is running very fast and high I might as well not bother at all . I also take a HRT tablet to help with the problem even though my hormones are OK now . I have a central water fall which cascades down my forehead , nose ( drips off this ) runs down my chin , neck between the boobs ( feels like a spider running around ) and then across the tum and in between the thigh's, most strange ...........BUT I dont just get mine at night , oh , no mine is 24/7 . sometime when I'm out I feel like I've wet myself as the sweat is so bad between my legs my underwear is stuck to me ....yuck or what ! I spend a lot of time in my cotton full length kaftan's and a par of knickers ..........nothing else as bras are just the pits when wet , tights ............you've got to be joking , sox's ...........dishcloths more like and anything remotely tight is just a no-no unless I dose myself up to the top most limit of my drugs to give myself a 4-5 hour none -sweaty brake ( which is what I did when |I saw Corina ) I not only sweat at night when trying to lay down , but when I see food , smell food, talk , get exited , hear noises that make me jump , get worried , get annoyed , upset , angry , sad ...............er ................well basically anything my body thinks is not to its liking . I have been told the chances of this stopping or just disappearing are as remote as finding the Lock ness monster in Tescos on the fresh meat counter selling cheese with a bunch of radishes stuck on his head singing 'all I want for christmas is my two front feet' .................in other words ' its here for good so make the best of it ' I do find sometimes it is a help ! let me explain ...................I have been out to a friends home for meal and have found that I cannot eat what is served ( yuck or what ) so when the sweating starts I have said I just cannot eat what I have as its to hot , to spicy, to much ..........you know the sort of thing . This way the people dont get upset because the meal isn't quite what they had in mind , but poor old hubby and son are stuck with eating the lot . So , unless some doctor comes up with an operation or drug to stop it .............well if there's ever a water shortage around here again I'm sure my hubby will find a way of tapping in to me ..................OMG what a thought ! Happy sweating all ..............Willows XXXX

Hello , well I've been thinking a lot lately whilst I've been stuck in bed having a rather nasty POTS few days . I will not say which channel , but I am in contact with a TV channel and am about to do ( Via one of its bosses ) a presentation on behalf of my charity . I have designed some jewellery , not costume but diamond and gem set original designs which if made by this company will be on the net for sale soon , the boss I spoke to was all for it and has suggested I have a monthly spot of sale a design in with an amount going straight to the charity from every sale I make . My first design is a pendent which is of an item from our garden ...........made of 9ct gold set with a green gem ( emerald, Russian diopside or green beryl ) and a red gem ( ruby , sapphire or garnet ) in a special way I have also written what the item stands for as it is for 'the family' My second item is a bit harder to design as I want two have two colours available one with diamonds and pink sapphires and one with diamonds and blue sapphires , for a girl and a boy . The idea is that the pendents can be joined from a hidden clip at the back of each one , so for instance , if you had a daughter then a son , you could have a pendent with a pink section first then a blue underneath ...........have another son , another blue part . My only problem is what happens if someone has 12 kids or 3 sets of twins or adopts 38 kids and more , OMG that rather along pendent to wear ! I'm also hoping to add to this earrings with both boy and girl colours or just one coloured items again. I must admit I haven't designed any jewellery since my step-daughters pendent some 10 years ago , made from white gold with bright blue topaz and diamond stones , it was a blue 'J' set into a diamond heart and exclusively for her, a one off never to be repeated item , she was so delighted with it . So , if I pull this off you should be able to see some of my work on TV soon , going out to the UK , USA and Germany . This will not only help the image of the channel and crease its sales , but you will be able to buy an item especially designed by myself and signed by me for CHSW which in turn will and increase the amount of money paid into my hospices bank each month , so we will all win . As I said to the charity's boss last week , 'I may not be able to do coffee mornings , bring and buy sales , cream teas , marathons and all the normal type things us little old ladies do for charities but bring on the 'big boys' let me let my imagination run riot and I will come up with idea's even you hadn't thought of ' And this is one of them , our own charities jewelry designer selling items on the telly , OMG better loose the fat and the 6 double chins before any of the telly stuff . I'm rather excited by this , so much so that I'd better be careful or I''ll go overboard with' Pots' again , soon . Bye for now love Ami . P.S if you have any idea's based around items that are for the family or child based , drop me a line and I'll have a go for you , I'll send back your ideas via your own home email account so dont forget to include this for drawings ......AMI

My husband went to hospital had the injections that hopefully will kill off the terrible pain his has in his left foot. He was supposed to be at the hospital at 9 am , have the 7 injections and then come home again via hospital transport as I am not able to do much in the mornings first thing ( needed to be ready and done by 7.30 am ) because of my 'stiff as a board ' legs, hips , hands and fingers ) well anyhow I managed to get up and was pottering about doing my old 'de-stiff-ecation ' bit .....shuffle here , shuffle there , drop things on the floor , spill coffee , you know the everyday sort of thing we all love to do The phone went at 9.45 am ............'hello dear ' small voice of hubby on the line , 'I'm finished already' silence , so I'm thinking hello what is he after ? then another short silence followed by ' er , dearest I was just wondering if by the slightest chance you could possibly , at your own time and only .................. Hello I thought I know exactly what he wants ! 'OK .....OK 'I said ' say no more , just sit down by the entrance and I will be there as soon as I can' and hung up . Looking down at myself I then realised I was in just a huge , vast , elephant size , almost down to the floor , room for 5 more adults and a large dog , preferably not a wet dog that is ........... white fluffy dressing gown and slippers Oh , well what the heck , I'm sure Devon have seen a lot worse than this out and about , as long as I dont have to get out the car , know one will know so off I went to get poor old walking wounded one and bring him home to rest . Having done all this without so much as an inch of my dressing gown being seen by the general public and the 5 other adults and the dry dog all behaving themselves in the car there and back , Mark is now de-frosting and has commented on the fact that he can feel every single injection site and that he would rather not feel every single injection site as they hurt ...........rather ! Mark has to have another set or two of these injections each month until the nerves are no longer 'screaming ' at him 24/7 . So , in all it was a good morning for hubby and I managed to Collect him from about 18-20 miles away without any mishaps or being seen dressed like a dwarf in a snow mans suit .................... so all was well in Devon . Then .......................... honestly ...........you men , there was hubby on the phone talking to someone and all I heard was ' Oh , yes and Ami came all the way across to the hospital in nothing but a dressing gown and slippers ........ not even knickers on ' OMG.............................let the ground open up and swallow me whole ..........OMG how embarrassing , just let him wait until he thinks he is safe, I'll think of something to re-pay him for that little bit of information between 'guys' ............mmmmm black poster paint around the eyepiece of his camera ? cooked pasta shells in his shoes? sew the legs of his knickers together ( again ) I'll think of something for his kindness .................AMI

Hellllllllloooooooooo and welcome back Corina . I thought you didn't notice my legs where getting er .............rather swollen , but you did miss my hands and fingers .......! never mind it was well worth the effort coming to see you all, I expect like me , you had to recover the next day via bed and a good two or three DVDs while resting . Mark had already 'scoffed ' the biscuits you brought him and has suggested that if I send you the money for a few packs plus the P & P you may be able to post them to us please ...........for further enjoyment and 'scoffing' by Mark although we have them in the UK ours are rather dry and almost stale compared to the lovely chewy , caramel centred ones you kindly brought for him ....................typical man tried to see if he could get a whole on in his mouth all at once , the answer is NO its not because you tend to choke if you do honestly , why do men do this ! As for the birthday ring details , I will send this to you via email later today ( instead of 3 am in the morning ) so that if you need to you can add this onto your jewellery list for insurance purposes, I still cannot believe that I got exactly your size And as I said when I gave it to you , I really did enjoy getting it for you , and its not just from my family and I here in Devon and becuase of our friendship , but because of the support , the care and concern you show to all of us on the Pots site . I for one wanted to acknowledge this friendship by giving you something that you could wear, and by wearing it when you have days when its hard to get through you can look down at the beautiful ring and know that we are all here for you on the Pots site wishing you well and thinking of you. The birthday ring you now have fitted this perfectly , it has no beginning and no end ............this is friendship . The term 'old crock ' means someone who is slow, immobile , dithers , falling to bits and slightly past their prime ..............mmmmmm , well , I'll take the slow , falling to bits and immobile bits not to sure about past my prime as I dont think I've every had my prime , so I can't pass what I haven't had , can I . Thank you all for joining Corina and I in our expeditions this Summer and may we all have more posts on the forum soon of others who are meeting up so we can share your exploits as well . If anyone is coming to the West Country over the next months or so please do email me so that we can meet up and talk about life with dear old Pots and of course take photo's for the forum to see. It would be nice to start of section of just photo's taken of Pots people who have met , nice to put faces to names and places around the world and also really nice to be able to share the experiences of being 'out in the big world ' especially for you guys who have great difficulty getting out , travelling any distance let alone gong to another country . Lovely to have you back on the boards again ( makes you sound like a tap dancer ) and I will look forward to nattering away with you as usual .......health permitting ............ oh ...........I hate that line ! Hugs, kisses , big smiles and a wave from all here ( if they where awake and could read this post that is ) bye -bye for now AMI XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Ok all ................................. Marks put up 2 photo's of Corina and myself at the pub ! ( not a spot of alcohol passed our lips ) 3 of Hegwig ; Her back and all the feather marking I did , one in our tree , on my arm and another . 2 of Fawkes ; one on his own perch in the garden and another . one of myself in the event at the museum and 4 of the event in the room , I had a special red globe light to make the room look a strange colour by the way , also the items in the room are only about 1/2 of all the' Magical Place ' items I have , ant more and I'd be going more than banging my head on a kettle every 5 minutes ! You will have to excuse the rest of the stuff ........vast amounts behind mine ...........as something went wrong when hubby was putting mine onto my own page and they ended up with all his as well ...........well at least you can see the firework photo's taken at our villages summer nights event ...........if you are scared of bugs , spiders and things DO NOT OPEN any other pages . Hope you like them Willows. http://s75.photobucket.com/albums/i318/bandit1_2006/?sc=3

Thanks for your replies guys , I will be sending any emails back to you today as I'm up and about again now. Mark now has his patches and is feeling a bit better , so I am going to ask him in an hour or so to put onto my link some of the photos , which will be from here linked to the photo page . The pictures of Corina a fine , but I look a bit of a sight , but never mind it was one of my ' bad looking days' you know the ones, when you either feel 'fat' have hair thats on end or look like you have been pulled through a hedge backwards . I am having real problems with my speak and writing today and have had to do this post at least 6 or 7 times going over and over it as it doesn't make sense when its read , I am also having problems speaking and find I cant get the right words out .................mmmmmmm now that will be interesting as I am to do some public speaking soon may be I should write some prompt cards ! ! Anyhow look out for link to new photo's here soon. Ami

Well , having taken 2 hours to get to Corina instead of 45 minutes becuase of roadworks I think you could say I was slightly tired out , in fact I remember setting off in the car and then arriving at the outside of the place , apparently I called them twice but I dont remember doing that ! Corina , John and the boys are so nice , it was if my Husband and I had known them all our life , we had coffee and those big Dutch caramel biscuits each , then Corina opened her present ..................mmmmmmm me thinks she was shocked ! ! ! , but as I said to her ; ' Its a ring of friendship , never ending or begining , just its a bit more posh than the normal sort , and its for your birthday girl ' I think Corina was pleased ! Funnily enough she had bought me the most wonderful hand painted mug and stand , made by a lady in Holland who makes one for each month of the year , as Corina didn't know what month I was born in ( Feb ) I now have the prettiest one I think , its all lavender flowers , butterflies and petunias in lilacs . As well as this Corina has now made a friend for life out of my husband as she bought him a large packet of those Dutch Caramel biscuits, as I held them up ..........his eye's followed them , where ever they where moved to Mike got a bag of some sort of Dutch sweets ,as we are unable to read them it should be quite a surprise to see what they are . And.............on top of these I was given a broomstick with Nimbus 2000 written on the handle ! ! ! ! And so we talked and talked about pots and all the silly things that happen that make you think your 'going mad ' .........nope it appears what I get Corina gets to , OH ! that makes me feel a lot saner and happier. We talked about my charity and I had brought photo's to show the family of my show from day 2000 and until now , I also took the drawings I had made of 'Hogwarts Castle' of next years event , we talked about everything , it was wonderful to be able to natter on about the illness to someone who understood , knew all about it and who's husband also understood , which was great for my husband as well as he could also share things with John about the care of us two 'old crocks' Lunchtime we went to a pub , but unfortunately the food was just gross I thought it was me , as I have problems with my taste and smell , but it wasn't and Mark , John and myself struggled to eat much of it , I complained but the manager didn't want to know . So after this we went back to the flat with Corina and John , had more coffee and more natters ! It was so strange , Corina and I are quite alike , so alike ............we both have exactly the same lipsticks wow..........! thats strange or what . And so at about 5 .30 we had to go home , I was very tired by then and as soon as Mark set off I feel asleep only to wake up at the Cornwall/Devon bridge feeling sick . Once home I had to go straight to bed and take some 'back up drugs' and I just fell asleep at about 6.30 pm sleeping until 11 pm then woke to find Mark trying to 'quietly ' come to bed ........so hope ! In all , my day with Cortina was absolutley wonderful , she is a very beautiful lady and is also very cheerful , kind , and understanding and we will I'm sure keep in contact from now onwards via letters and cards to. If Corina ever gets the chance to come to the UK with just John then we would love them to come and stay with us here at the house ( kicking Mike out of his double room ) as I would love to be able to show them my village and share more time with such a lovely couple again. From a very happy Ami.......... who now knows she's not as mad as she thought she was ! Photo's of the meeting will follow soon on my link site , but Mark is very unwell today with his foot again as the anesthetic patches have run out and the pain is so bad he's white as a sheet and almost in tears with it , he did actually cry this morning for the first time ever , which was upsetting for me to see as he is always a strong man , the pain must be so bad for him to be unable to cope . AMI

Some of you may have wondered why I'm not of here much now , yet seem to be able to do my charity work with no problems . Well its a case of if I didn't do something when I am well enough I would end up in bed 100% of the time instead of the 50-60% and sometimes more I spend there now , my brain has always been active and if |I dont keep this going , however much pain I suffer doing this , I might as well sell all my shoes and just buy more sheets for the bed I have for years fought my condition with every bit of strength I can find from within me , but I'm now finding that more and more of the little annoying things are escalating into much bigger problems . Let me explain what I mean . INCREASED ANGINA ATTACKS. My angina has increased and I suffer an attack at least once or twice a week now, at 8.30 on Saturday evening having been there since 10.30 am in front of about 40 children , 20 parents , 15 adults who work at the museum and my family ...............I yawned very loud indeed , then I yawned again , and again , and again , this for me is a warning that I am not getting enough oxygen and I'm about to have angina , by the time my husband got to the car and back with my GTN .............I was already grey, sweating , chest pain like a bulldozer , tears streaming down my face , feeling sick , dizzy and generally feeling ' not to good ' GTN , strong coffee and a cold cloth and in about 20 minutes I'm looking better , but so tired I dont quite know what to do with myself . Being 60-70 miles from home and from my wonderful bed ..............ahhhhh , bed all I wanted to do was go home and lay down. Unfortunately the person who owned the museum expected me to carry on working until 10.00 pm even though I was looking like death and was unable to stand on my own , her reason for this , she like most people had no understanding of POTS at all . I had informed her fully of my condition , its pit falls , ups and downs and that if I did to much what would happen , but as she had never heard of .......never seen........... or talked to anyone who had POTS before, so she magically swept aside all I had told her as if my condition was none existent and for her it was a case of 'carry on regardless ' . My son decided differently, and with not uncertain terms told this lady that I was going home NOW , collected by vanity case , cloak and other small items and sat me in the car and off we went . INCREASED JOINT MOBILITY . My joints are now causeing me more problems , my hip joints are constantly being pulled back into alignment as one of them will move so much that I will get the most horrendous pain down the hip , leg and into the foot . On Sunday having just eaten my lunch I went to pass a plate to my husband , as I lent forward my left elbow slipped off the side of the arm chair , somehow in doing this it dislocated and I was suddenly in the middle of excruciating pain and found myself screaming at my husband .............(who didn't know what was wrong at this time) unable to move at all , tears steaming down my face again . Running back into the room I managed to tell him between screams that my left elbow was dislocated , he was able to pull it out then with a mighty 'snap' he put it back in ( it crunched as he did it and OMG the pain ) it is a good job that my husband has trained in medicine of this kind ( mountain rescue medicine etc ) and can do these things for me or I would be in big trouble most of the time . INCREASED INABILITY TO EAT & CHOKING ON FOODS . I'm finding that I can no longer eat three meals a day , two meals a day or sometimes even one meal a day . My appetite has dropped to the extent that I just cannot eat more than an average child's plate full , and I mean a child of about 2 or 3 years old ! Nine times out of ten I then cannot eat more than 10-12 small mouthfuls of this , when I do I will chock once or twice with eat meal as my throat goes into a contraction ending up with my husband having to lean me forward to get the food back up again. mmmmmmmmmmmmmm, nice or what ! INCREASED INABILITY TO SLEEP NIGHT TIMES. Yep , this is why I'm here at 3.50 am instead of fast asleep in bed , I haven't been in bed all night for about 2 -3 months now and on average sleep about 2 hours at night time . If its not the hips, legs or chest pain then I'm sweating or scratching myself silly with the feeling of ants running all over my body , which when I stand just disappear . INCREASED INABILITY TO SPEAK CLEARLY. This is very annoying as well as distressing at times. I'm find it hard especially first thing in the morning to be able to speak , it's not just the yes or no , coffee or TV on , I'm talking about holding a conversation in sentences that make sense . The phone went a couple of days ago and I was trying to tell the person at the other end details of mine , but I kept being unable to say the words and stumbling over them , not being able to pronounce things or taking a word and having to brake it up into two or three parts like ..........instead of saying Plymouth I said Ply - mo - thski and so had to keep repeating it or forgetting what I'd just said and have to ask again and again what did you just ask me . What with the new hospice fundraising events about to be launched and my Hogwarts Castle to be sorted ( I'm designing it at this time ) and built very soon , I will be doing more public speaking , more standing , more meals out for fundraising and generally more of everything So you can understand why I'm getting worried by all this . I haven't changed my drugs , the way I take them , food items , house stuff or anything at all in my life. So I have to put it down to that after all these years of keeping ' POTS firmly in the cupboard ' its now coming out and on roller skates heading my way with an evil look on its face . I have never told any of you this before but many years ago when I was about 16 years old I was in a wheelchair for about a year , having been unable to stand on my own because of my back, hips , legs the dizziness and passing out . I had been in bed for 6 months before this very unwell ,but had made the decision that if I didn't get out of bed I would be there for the rest of my life , having done that I then set about getting out of the wheelchair , it took me 9 months of falls , pain, tears and just hard work , but I did it . Now I think I'm heading back that way , my husband is so worried , tonight it suddenly hit him just what do for the family and just what I have achieved and he is so upset by the thought of me being in a wheelchair again. I have spent most of yesterday in bed ( or on it ) asleep or trying to talk about upstairs very shakily , almost as if my whole body is going through a shaking bout at times. I am worried about my future and how my family will cope if I am 'legless' but then when I think about this , at least I will still be with them , at least I will be able to do things from my 'wheely-chair' and make people laugh , it was inevitable that my condition will move on and as an adult I have to except this, however hard it may be . So with this I will trundle into the kitchen and make myself a cup of coffee at now, 4:20 am in the morning , give myself a good talking to pulling myself together again putting on my face of ' I'm alright , who me ? No , I'm fine ' then crawl up the stairs and without squishing any spiders who happen to be lurking on the stairs or in the hall as its time for them to come in again .............go to bed and dream of meeting Corina at 11 .30 am today in Cornwall . Willows ..................a bit fed up with her life at this time .

Yesterday Wednesday 28th August I spoke with Corina on the phone With just 35-40 miles between us now I hope today , if I'm still OK to get my husband to drive me down to Cornwall to meet her for the very first time . One of the reasons I haven't been on here much is that although I always come on 'all cheerful and well' in fact .................what you cant see .............you dont know . and I'm not that good at the minute. When Corina started to speak to me , becuase my stress level rose my voice dropped about 3 pitches and I had a job speaking because of this once I had 'calmed down' my voice started to rise again which sounds quite funny when you are speaking to me , it reminds me of my son when his voice was braking , some 3-4 years ago , that sort of hi-low low-hi and everything in between voice when you dont quite know whats going to come out ! As its Corina birthday I bought her something that she can keep that will remind her of being in the UK and meeting our family ...................everytime she looks at it , well I hope I decided to buy Corina a ring of friendship , to remind her that friendship has no end to it , it is a continuing time of caring about each other , being there when things get tough, listening to one another , giving support and understanding even when things are bad for you at that time . A true friend never turns there back on you , never makes fun of what you say when times are bad and always contacts you when you haven't been around for a while . This sum's up Corina so I'm hoping that for all the care and understanding she has not only given me , but others on this site , she will take the gift I have found her ......................its rather pretty and I'm sure when she returns home she will tell you all about it . I'm going to try and go back to bed now as its 2 .15 am in the morning in the UK , I'm still feeling very sick , but at least I'm not shaking anymore now , blooming body Willows.

Hello again , I have had a look and if anyone wanted the cage of little elves they do come out at a bit of a price . You see I get most things at wholesale /trade or given to me , so when I had a look at the price of things it came out at $130 or about ?70 UK , which I think is a bit pricey and this is before postage and packing is added on ! So what I have said to anyone who has asked if they could have one is this , if you want to get a cage ready , I will get the little fellows for you at trade price , then once you have paid for their bodies I will ship them off to you , this way you dont pay silly amounts for them , as none of us have excessive amounts of money to play with being unemployed or sick or working part-time most of the time . So if you , and this is anyone by the way , wants to make an owl ............I will send you photographs of how I make them , list all the stuff , quantities you will need , how to do the faces , colors and where to get the feathers at good prices etc . Then you to can have your own owl to watch over you , send mail with and generally talk to ...................yep , I just forget that the 7 owls all sitting here now watching me are not real and I keep talking to 'the fellows' as I call them , now that Fawkes is finished ( photo's soon ) I natter away to him as well , at this time he's sitting on a lounge chair watching us all , mmmmm he does look funny and I expect him to ask for a wild life programme to be put on ! Bye for now WILLOWS