willows

Hi Maryfw. Is your voice coming and going or just going for a period of time and then coming back to normal again? I have bouts of 6 weeks without a voice and have had this for over 30 years on and off. Tomorrow at 9:30 I'm having my throat and vocal cords looked at 'in depth' by a team of doctors because at times I sound just like a man ..............and its so sudden , one minute I'm me all normal voice and fine then , its starts to go and I end up squeaking , its so embarrassing if your on the phone to someone and they dont know you . Next week I'm doing a live radio interview with a big radio star about my charity work , this lady has a habit of snorting when things get very funny , so image us two, me squeaking and her snorting ......... live on the radio . Well all I hope is that it isn't one of my tumors growing from the inside in and not the inside out ..... if that makes sense to you ???? I dont have acid reflux, my drugs dont effect my speech or if they did it would be after I'd taken them and a not at random times, what I have noticed is that the more pots I get the more my voice does a Larry Gracen !!!!! Ami and her wonderful mouse voice !

Sorry everyone for not getting back to write about whats going on etc , but with just 9 days to go its just manic here. I dont know if I've told you but Mark has broken his hand .....yep his only one , silly man found a broken ladder in the barn we are hiding the castle in and decided to make the broken run safe by whacking it with his good hand , what he didnt know was there was a metal bar hidden in the old wooden part of the step , he hit the ladder with a mighty blow ...............and broke his hand OMG you should see the size of his hand now and the colour , talk about Josephs multi coloured coat !!! But he will not get it plastered or strapped and is in so much pain with it , but he will not give in as we have not finished the castle build yet , the man who made the castle was around 4-6 weeks late getting the base to us ..............OMG have we had to work hard getting it finished , all painted and all the art works done ! Now with just 9 days left we still haven't had the plastic sheeting that goes in the 7 long windows ( instead of glass because of the children ) and the 15 foot clock tower is till to make . I'll send photo's via my normal link once we have the whole thing painted and actually ready to move to the event . On Thursday I'm having a horrible throaty investigation done , just what I need isn't it ! Once the event is over and if I'm still alive I'll be back on here and telling you all about it , honestly guys . look after your selves and dont do what mark and I are doing and work yourselves silly making yourselves feel like something you have trodden in and looking like death warmed up .............oh , happy days ! Love to all Ami .

hello Becky and all Sorry I haven't been able to get back to you but we are just snowed under with the event at this time. First Becky , I hope you have a wonderful day , I should think you will look stunning in your dress , so dont forget to send me a photo so I can add it to the wall which has a number of the forum pictures on . As for the event , well its getting closer and closer and Mark, Mike and I are trying to get the castle finished ...........BUT poor Mark was on the roof hammering away putting up the battlement wood so that it could be cut into the exact fit and he fell and has now broken a bone in the back of his one good hand ! I dont know if I told you all or not ???? But Marks right foot is now permanently damaged by the hospital and he now has to wear a foot /leg brace so he can walk without falling over .............OMG talk about the walking wounded. Mark now has a stick attached to his right stump for walking , a foot/leg brace on his right foot and his left hand is twice the size , but will he get it sorted ...........NO, he will not get it done until he has finished the castle !!! We have been let down a bit over this as the guy who was building it had such a lot of work on he didnt do all the bits I asked for , so we are having to finish it . I've manged to get a couple of friends over to help paint the outside of it as a 10 foot castle which is over 20 foot long takes a lot of paint , and it has to have two coats !!! I've now done all the windows and the frames , but the plastic glass will not be put in until the week-end at the earliest, the front door is to tight now Marks put the front panels on , so he's got to plane that down , then I can add the metalwork to it like : mock door hinges , door knobs, lions head door knocker , 2 large dragons heads and some other bits and bobs , plus some artwork . I've managed to do some work on the actual body of the castle artwork wise , but still have another day or so work to do on it . The floor is getting very dirty inside , so we are going to slap some floor paint on it as soon as the outside is finished. As for being seen ................well , I sent out invites to all the local press and lo and behold we are now getting some very good coverage : On the Friday and Saturday 'Spotlight ' a show thats on the BBC at around 6:30 pm UK time ( after the news) is coming to the Hoe and bringing a satellite van so that they can film us LIVE !!!!! I'm also doing a chat show with a lady called Judy Spies on the radio . Then Natalia is filming and recording us so we can go onto Devon Online ...........and some of the local newspapers are covering us as well .....................mmmmmmm, well I'd better make sure I put some make up on that night and the following two days so I dont look to much like 'death warmed up ' . I'm still very excited , but as yet haven't 'hit the floor ' which is a good sign for me , I've lost about a stone and half still ( 21 lbs) so I'm not looking to much like an over grown elephant !!!! Still dont know what to wear under my wizard's cloak for the opening on the Friday night , I had suggested going naked , but hubby thought it may scare the seagulls and turn all the ice -cream to liquid !!!! so I'm still working on clothing . Mikes been up and down , his toes did the bleeding under the nails the other day and he's had bleeds on his face as well , but other than this he's just been very tired . he's now got 4 of his college mates working with him as security for the castle week end . Once the castle is finished I'll get mark to take some photo's of it , Dobby the life size house elf, us on our costumes and Mike in his full security clothing ............so you can be part of the event as well . Look after yourselves . If anyone is coming to Plymouth on the week end of the 23rd 24th or 25th may email me and I'll arrange some tickets to come to the 'by invitation only' press and sponsor event for the Friday 23rd , we are having celebration cake, champagne and the children can win a mini Dobby and get free sweets..............so let me know anyone if your coming to the west country at this time ...............by for now AMI .

Hello Endure, Well at least your still here after your problems in the past few years...............dont slip backwards its not worth it. I to have temperature problems, my husband tells me he sometimes its like getting into bed with an electric fire full on or laying next to a blast furnace, he's often been tempted to lay a slice of bacon on me and see if it starts to sizzle ............. Hot is an understatement to say the least and there's not a thing I can do to stop it ...............summers coming and I know I will spend most of my time between the end of May to the begining of September stuck in my bedroom with the curtains drawn laying on the bed with just a caftan on . Winters OK but then if I suddenly 'drop out' with a sudden full blow pots dose , well I go down with really bad raynaud's and get so much pain from the cold it makes me cry , silly really but it just hurts so much . I dont know the answer to the problem, in my case its I just grit my teeth and get on with my life as best I can , doing something for others ( working for children who will not live long ) keeps me alive, gets me out of bed in the morning if I can and gives me something to feel good about with my life . Take care Love Willows ( Ami )

Hello all again, Today I went to see the ENT consultant , just 8 days after seeing my own GP was that quick or what !!!! Anyhow I took with me my full drug list ............which I think you can say 'blew him away' and also a copy of any replies you posted on here , names and everything taken off so he doesn't know where they came from or who you all are . He read all of your replies with great interest and said what a brilliant idea to have a site that you can ask people who have the same condition as myself if anyone else has this problem and what they have done etc, having such a complex and rare condition like ours really causes problems for UK consultants to deal with , unfortunately . He then got me to do the normal face , mouth checks and then count up to 100 .........and with every number blink once OMG you try it , hard ..........er understatement I kept getting lost and my voice was up and down like a lad who's going through puberty . Next came the nasty part , he then shoved a long tube up my nose with a tiny camera attached to the very end ........had a look about ..........ouch , tears streamed down my face Then he went into the other side of my nose .............ouch , ouch .........more tears along with the mascara I'd tried to put on that morning , so I now looked like a panda with a bright red nose ! Thinking , as he withdrew his nasty tube , thank heaven for that ............he went back into the first side and started to go down the back of my throat . OMG ..................this was not nice and of course I started to heave somewhat , but he carried on and asked me to swallow , then talk ................er , excuse me its hard enough without a black rubber tube up your nose and then down the back of your throat to begin with .......but now your asking for miracles BUT ............in order to check my voice box for cancer ( thats visible) I had to talk with this tube in, so off I went talking about the one thing I love the most , yep , working on Hogworts Castle ..............and just managed to do about 15-20 seconds worth before I wanted to heave again. Next came the ' blow a trumpet ' face and then other strange faces and noises ...............yep, mascara still running down face and nose even brighter red than before still with my little freind inside my throat having a good look about . And so the out come of all this is ? I've now got to have an emergency test done which is something to do with drinking a fluorescent dye and being scanned at the same time he's ruled out any visible cancer or tears or lumps .............BUT and now this for me is the BUT. When I told him about all those lumps I've had removed from all over my body , cant remember of hand how many but its about 16 or so , his eyebrows went up and he started to scribble like mad again. The consultant is sure that there is a problem because of my voice changes and the way my throat reacted to something he did , but its something he cannot see on the outside , he's wondering if I have one of my special lumps growing from the inside of my body working its way to the surface by pushing the lining of my throat , which would account for me feeling that I can feel something , but he cannot see it .......as yet , clever man So with now just 30 days until the big 'Hogworts Castle on the Hoe weekend' and I've just written my speech for the event the big question is 'Am I going to be able to read the thing or even talk ' ????? Watch this space for answers after the next round of tests in 8 days time ............lucky me I tell you one thing , at this rate I'll be as skinny as a bean pole by the time the newspapers and Tv get to cover the event , I've lost 16lbs in just under 4 weeks now and this evening I was unable to eat more than a couple of mouthfuls , not just because of the difficulties I'm having ...........but because I've now got a horrible sore and stinging throat from his little freind ' the nosey camera ' playing around with what feels like a wire brush on the end of it ....................mmmmmm, hubby could do with a new wire brush for cleaning the paintwork on the outside of the house before he paints it this year , I wonder if this new consultant would lend me his ............... bye for now all ...........take care ............and dont do anything I wouldnt do ....................well unless it makes you laugh trying . XXXXXXXXXXX Ami .

Thank you all so much for your replies, Its nice to know its not just me 'going off her rocker' and that others have this problem to , but then , if you've got it as well I do feel sorry for you as I find it both upsetting and down right annoying as getting food down past the point thats 'gone haywire' leaves me exhausted at times. I'm drinking loads , so the dehydration point is a none starter and I hardly ever get a dry throat . Nope, its just this awful 'thing ' in the throat and the voice going from a sort of 'lower tone me' to what appears to be the voice of a transvestite .............not that there's anything wrong with thier voices , but its just I 'd rather sound like me I'm still working hard with Hogworts Castle , if you look on my charity site you'll see under events in Judy's diary that I'm now listed for the 24th and 25th May on Plymouth Hoe Devon , so come and see me if any of you are about . My life size Dobby the house elf arrived with all the professors gowns and its a case of just doing the castle painting and its all ready . So fingers crossed guys as I'm going to see the specialist on Tuesday 22nd April at 12:30 pm , my doc got it very quickly for me ( about 8 days ! ! ! ) becuase if I loose my voice again before the event , who will run it for me ????? I have as yet not trained anyone up .................OOOOOOOOOOOps so the ear , nose and throat man had better come up with a good answer or some tip-top help because a lot of money, time and effort for the past 8 years has gone into Hogworts and I'm not going to let POTS stand in my way ....................so there By for now everyone , I'll write in the chit-chat section in a few days time about Hogworts Castle and on here again once I've had my throat inspected , oh , I'll see if I can post some more photo's of what I've been up to with the charity later on as well . Look after yourselves and I will send out a mass email again as soon as I have a few minutes to spare that isn't to do with Hogworts .............and I can stand upright ......... actually see in a single vision instead of two .......... and an awake Love to all Ami XXXXXXXXX

hello all. Yep , Its me I'm still here and working , a lot slower for CHSW , but still about . Right , I have an awful problem , one which I have kept quite about until today when I went to see my Doctor ............who was somewhat shocked and surprised by it . It started about 12 months then I lost the ability to sing , OK you'll say so what ? but I've always been able to sing and have the very good voice ( various choirs + stage work ) now there is nothing there. About 8 months ago I started having bouts of voice loss for a minute or two and the feeling of something stuck in my throat . About 5 months ago the voice loss became very prominent and it now lasts for anything up to 2 minutes and my voice is NOT MINE anymore, sort of lower and rougher !!!! 6 weeks ago ............and this is why I've been told off , I started getting the feeling that this something in my throat has got larger and its now causing real problems for me , in fact I 'm having problems eating and swallowing to the point I've lost over a stone in a matter of a few weeks. I know my grandmother had something like this because she had a huge scar all the way around her throat which us kids loves to drawer beads on with a Biro ............. well we where kids ! But the inability to swallow is something quite unsettling , its like I have a permanent load of drugs stuck in my windpipe and getting food past this place is awful as I can feel everything that I swallow and by the end of the day its so bad I just cant eat ..........................after not eating ( alseep , or so I'll say ) its calmed down again and then off we go with another day of struggling to eat things . So I'm having an emergency test done , you know the one where they stick a camera down to have a look about , \I've had it done before so I know what I'm in for and I'm not worried by it at all . So ...........has anyone else got this problem ????????????????? Is it just me or is this another POTS little nasty . My hips/base of spine is also very bad now and there's some talk that if it does degenerate anymore well ..................I wont go there but Corina knows what I fear and its not nice . Take care all and if anyone has any idea other than thinking I've scratched it ( no ) hit it ( no ) or have swollen glands ( no) let me know . Ami .

Yes , you did read right guys........................ I'm building Hogworts castle for real , well not real life size ............ I'd have to have some real big sponsorship money and land for that one ! No, I'm building a smaller 4 roomed one that can be moved around from event to event to raise funds for my children's' charities next hospice , thats hospice number 3 for us . So with just 15 weeks to go to the opening night for the press 23rd May 2008 at 7:30 pm.................... The with the full opening to the public that week-end the 24th & 25th May 2008 from 10:00 am until 5 :00 pm both days ..............well I'm trying to work flat out ...............flat out being the right words for the way thing's are going with me I'm so behind with the work and keep being so unwell that I'm now some 2 months behind with all the interior workings . OMG and I am trying to keep myself going by working a bit then a lay down , a bit then a lay down .............I actually feel like a 'jack in a box'. Mark has had to tell my boss that I am in no way well enough to handle the dinner dance as well as the castle build , I had a number of Angina attacks in one week and the veins in my fingers started to burst again . BIG warning signs that my body is telling me .....STOP IT and SIT Down , mmmmmmmmmmmmm make me remember how I used to tell off my dog when she kept jumping up at the flies on the window pane!!!!!!!!!!!!. Anyhow the castle is being built by a Cornish company ( my mate Dave the shed ) Mark and I are doing all the interiors and building any other furniture or finding it at second hand shops , car boot sales or auction rooms , I do have a furniture making company doing 2 students chairs and Dumbledore's study desk , so thats a big help and also with the funds that are bring raised by a huge on site raffle by some other friends of mine on the net , well I can now get Hagrid's costume and some other parts of costumes I need so desperately . So I'm afraid if you do write to me guys at home and you dont get an answer right away its because I'm either laying down or working a bit .................or half way between laying down and getting up and working ............... tired, is not the word for it , in pain ( dont even ask ) but at the end of the day I will have the most beautiful silver castle with a clock on a 15 foot tower , it will have some wonderful big castle doors , dragons sitting on the castle battlement tops and a huge lite up tree by the castle wall. Four rooms all done out and Dobbie , Fawkes and Hegwig all ready for the children to say hello to ..............along with three of my friends all acting as stand in for the real Hagrid, Professor Mcgonagall and the Divination Professor's son . Some of my friends are going to run stalls for children in rows to the castle doors ( Diagon Alley ) all dressed up in costumes as well and I now have a man who is desperate to play Hagrid come and speak to me , brilliant is all I can say .............. after 8 long years of Harry Potter DVDs day in day out ...............my dream is almost here ..............yes, of course I will post photographs of it all on the photo site I use for you to all look at and if any of you want to be there at the grand opening , email me and I'll tell you where it is . Willows................Ami XXXXXXXXXXXXx

Thank you so very much guys. Sorry I haven't been about a lot but I have been so unwell following the loss of my sponsorship for not only the ball, but the castle , my jewellery and everything for my Charity , its such a long story , but if you want to know whats been going on then do a private message to me and I will send you the link to the forum I write on concerning this .............I now have all the sponsorship for the castle back , if not twice the amount as not only did another company step forward , but the owner of three web sites, then the original company and then ............members of the forum all called for an account to put-money in for the castle , so much has gone on its unbelievable , yet so kind of everyone . We have started to build the castle now , it is to be in pale silver all over with black artwork around the stained glass windows, doors etc, , battlement wall tops , with a 15 foot clock tower set with the Harry Potter clock face , the two front doors are to be cut like bishops mitre hats will have the black artwork designs taken form the body of the late Sirius Blacks on them . A large twinkling tree some 15 foot will hopefully be standing to the other side of the doors and at night the whole castle will be lite up by spotlights of various colours ...................OMG , after 8 years of work I still cannot believe that in May 2008 I will be opening the doors and saying ' welcome to Hogworts ' for the very first time , I'm getting all tearful now so I hate to think what is going to be like on the day with all the press etc ...........must remember to order extra boxes of tissues for the day ! So what did I get for my B'day ...........guess! The Noble collections Harry potter wand, Sirius blacks wand , MC Donagouls wand , a Tanzanite 1+1/2 carat white gold band ring , an amount of money from my husband which I dont know what to spend on at this time ! A Warner brothers Professors gown , the 12 inch Tri-wizard cup , the official Hogwarts Banner . More money , some M & S vouchers, and from the big sponsor who helps with the inside stuff .......OMG a whole load of items , not really for my B'day as they dont know about it , but as it arrived today , it was like having a HUGE ?200 box full of magical and Harry Potter items ...heaven I can tell you . At the minute Hubby and I are working together to make a chair , we bought a dining room chair for ?5 , cleaned and washed it , sanded it down and hubby made 'wings' to go on the sides , ( like a master carver) I now have to do the upholstery in a sort of two-tone blue and purple fabric called ' amethyst ' when the wood that left has to be coloured with wood stain in deepest mahogany , silver studs and added on wood carving s should finish it off .............pictures of the before and after will be posted . Right I'd better go , either email me at home or do a mail on here and I'll send you the site links, OMG you will not believe just what I have gone though in the past 7-10 days I'm so lucky I haven't had a stroke with my blood pressure hitting the roof ........them bottoming out . Never mind , whats done is done ..............thanks for the B' day wishes all , love from Ami xxxxxxxxx

Pregnancy No 1: Prefect all the way through , perfect birth then my son died at a few weeks old with no apparent reason. Pregnancy No 2: Twins, I lost a twin at 15 weeks but held on to one , went full term , then her heart stopped and she had to be 'helped out 'under general , they smashed her face , broke her nose , 2 black eye's and she had 4 stitches to her forehead ( she 's no scars now ) I was in labour 46 +1/2 hours before they realised I was in trouble. Had 3 weeks in hospital as was so ill Over 25 internal and 20 external stitches Ouch ! Pregnancy No 3: Twins , lost one twin at 13 weeks , held on to second one , had to be induced as blood pressure started to rise, normal delivery ...........then I had Septicemia, Pulmonary Oedema, heart failure , kidney failure. Was unable to look after my child, ill for 6 months , heart still bad to day some 26 years after. Pregnancy No 4: Stillbirth at 30 weeks. Pregnancy No 5: Miscarriage at 24 weeks. Pregnancy No 6: Miscarriage at 27 weeks. Pregnancy No 7: Pre eclampsia at 20 weeks , my very precious son was delivered 6 weeks early after they diagnosed me as having had a very small stroke , post toxemia and 6 months of **** as 6 weeks after son delivered my uterus fell out of me in Tescos at the frozen chicken section .........more operations, blood transfusions ...........but 2 live daughter and a son. My pots raged when I was pregnant and some days I was unable to function at all , at night the pain was incredible , but I so badly wanted children , especially a son , I shall never forget Johnathan which is why I work for children's Hospice South West helping other parents who loose children . No replies please this has been very heard for me to talk about Ami .

Hello again from the old crock here in the West country Thank you for your replies and here are the answers to the 'Guests questions: Paragraph one : Question one: A 'girl' of my age never really panics ! Question two: I have pain and burning in the heels of both feet as I have now managed to acquire ( unwillingly ) those dam heel spikes , ouch ! the sharp pain drives me mad and the throbbing if ............ha, ha I attempt to walk to far . Paragraph two: Question one: I am about to replace my ankle boots which are some 13 months old for a brand new pair of this type of shoe/boot , my doctor did suggest I do this ASAP and also buy myself some new walking ( heavy thick ) socks. I might add that my boots and socks are in immaculate condition and I never wear socks or shoes that are to tight , worn out of past thier prim ..............just like me Question two: I did have my muscles tested in 2004 and they checked out OK , but I have broken my ankle twice on this side and do have ankles that give way along with my knees, they like to do this when I'm coming downstairs Question three: I have had chronic hip and low back pain for around 8 years now , its worst when I lay down at night either on my back flat or sometimes if I'm on my side for more than an hour at a time . I have had slipped discs in the past ( 4 ) but had these sorted by a famous Doctor called something like Sirri-axe ?? Cirri-axe in the 1980's and very , very occasionally I get a shooting leg pains. Trouble is I get leg pains 24/7 which seem to come when I walk to much , er this being more than about 30 -45 mins IF I'm very lucky. Macks Mum: I have to take aspirin each day as the veins in my fingers , hands and I have had even my tongue will suddenly burst for no reason , this is very painful indeed and rather alarming . I have had the whole of my middle finger go black and stiff so full of blood that it increases to twice its size before I could stop it ( ice is the best way I've found + pressure on the point of explosion ) so dont worry I already have this being checked daily ............hubby with my foot almost pressed on his nose for inspection .! Thank you for your replies guys, its nice to know , in a strange way its sort of comforting to hear that others are having bits 'dropping off ..........exploding .............or just giving out and going thier own way ' like me, not that I'd wish anyone to suffer the things that we are all suffering each and every day (except for my ex husband, shhhhhhh and even a couple of pig headed know it all consultants at the local hospital ) Ami ........... frozen two toes of the South West !!!!

Thanks for your replies. First of all no I haven't got my feet cold at night , I really do take very good care of them , I have no dry bits, marks sore bits at all in fact they look like the feet of a 25 year old , all smooth and soft ( according to my doctor that is ) I went to see my GP today , I had to seethe stand in one of my own very special doctor has been ill herself and in hospital a bit better now , but still having to rest ...........anyhow he was quite worried having seen my toes and as I explained about first one toe then the other and its been for now almost four days solid . My doc is sending me for blood tests as he has said it is one of three things ; 1: The first stages of Diabetes...............both my mum and dad had this and so far I've escaped it . 2: My raynaud's has increased and I have now f=done permanent nerve damage to my toes, they where cold when he felt them , but pink . he has advised me to buy some new ankle boots and thinker socks , I do wear small ankle boots all the time from September to May and sometimes even after this , but he has said this may be the reason , if they s=do not come back in three weeks time and the blood tests come back as OK then its a Raynaud's problem and I will have to be seen by a specialist again. or 3: that I have some nerve damage from Raynaud's because I didnt replace my shoes as I normal do each November and that it will just clear up in the next 16-17 days . So it isn't just something NO to worry about .............I do not want sugar diabetes thank you , or to loose my toes to Raynaud's so its wait and see for the next few days .........I'll come back if anything happens in the next two weeks or so . AMI xxxxxxxxxxxxx

I am very concerned as today I woke up and got out of bed , stood up and thought that I must have something stuck under my second and third toes on my left foot , because it felt just like that I brushed my foot pulled a sock on and didnt think anymore about it . Got dressed later on and then went out , still not noticing this strange thing . Came home and took my shoes and socks of .....started to walk bare foot again and thought ' hang on a minute, there is still something stuck to my toes' so got a mirror and lay on the floor ( as you do ) and got my hubby to hold the mirror over my foot so I could see what was going on and what did I see nothing ............just foot ! So there's hubby looking down at my foot from above me laying flat on my back on the floor with my leg in the foot to ceiling position , and me still wiggling it about , we must have looked rather strange , but never mind , needs must and all that . I needle was brought into play next ................... and hubby had me closing my eyes and then he stuck the needle 'lightly' in my foot and toes , with me going 'yes' ....'yes'...........'yes' everytime I felt it prick me ................and I never felt it go into the two toes at all ....not a thing . Now this is rather concerning as I have very bad circulation as I have Raynard's , but I have always kept my feet well , un-cracked , clean , soft and warm .................so why now have two of my toes taken a vacation from my brain.............very worrying . If any of you have this or anything like it on hands or feet , then please let me know , I also get numb hands at times especially when I lay down at night but other than this nothing else really strange , unless you take me as a whole then I'm just utterly strange and weird from head to foot ! Ami ....................8 happy toes and 2 not talking to me !

I'm having the same problems as you all . I cannot eat anything hot , so a cooked dinner has to be left on the side to cool down before I dare touch it , also quantity is another problem with me now , when we go out to eat , which at this time is quite often as we are waiting for our new cooker to arrive (this Friday thank heavens ) well I have to ask for a child's portion as I just cannot cope with a normal UK adults meal anymore. This you might think is great , think of all the weight loss...............none! not a pound so far and I haven't been eating adult size meals for simply ages now. If I eat more than say 10-12 mouthfuls my throat contracts , I loose my normal voice and I sound like I have half a herd of frogs all sitting in my voice box nattering together , I sweat even more .......if thats possible than normal and I just feel so ill , really unwell , spinney headed , my hands, feet and face goes cold , I feel awful . So what with the hot drinks , this even includes the cup of coffee I have in the mornings , this has been the one thing in my life that I really love , to wake up , sit in bed with the telly on ( setting all the things to record for the day ) watch the news with a big cup of coffee and my vast amount of drugs this has become a sort of ritual in my house , but not any more if I take one mouthful I want to be sick or I get an instant headache ...........yet once I'm up and have been walking around for say 20-30 minutes I can have a coffee and no problems at all . This is so strange ! So cups of drink are either left to go cold or I drink noting but juices and that kind of stuff and as for food , well this has to be left to go cold as well or I eat salads and cold meats etc , my son and husband think its awful , but you just get used to it dont you , its that or nothing . I to am pleased that I'm not the only one , well pleased isn't a very good way of putting it ,but I think you all now what I mean , its very hard trying to get over to a ' non-pots-person ' or 'NNP' as I call them just what you have to do , change or make do with in order to have reasonable way of living each and every day . Ami

Hello again all . Sorry I haven't been able to get back to you but I've been struggling over Christmas and even now I've been up all night again very unwell , so at times its hard just to stay upright and keep food in let alone sit and write to people. Mike went to see his surgeon yesterday , he had lots of tests and the man decided he really didnt want to start to investigate Mikes knees or back until me had seen a 'POTS' man although he's no expert of our condition , even he said what Mike has had in the past 16+ years is very much NOT the normal for a fit and healthy lad to get , so after seeing all the x-rays of Mikes back , hips and knees he said that there was some problems with a disc thats thinning and some slight curvature of his spine , but what was most prevalent was the fact that he could see ( dont know what it was he was looking at ) that Mikes back kept going into some sort of spasm , which means he is getting lots of pain .............but from where ? So , I'm setting up a poll on the medical side to ask all parents just how many of you have kids with POTS as well , because according to my POTS man its not heard of , which I somehow just dont believe . Mikes back at college today , he's much better in himself now and looking forward to his 17th Birthday in March because I've promised him a chinese banquet on the Hoe in Plymouth , with around 7 of his mates and us to keep order . I'm a bit worried at this time about getting him his first bike , but then if I keep him covered in 'cotton wool' he will not like that one bit , he could just as easily end up attacked again or be hit by a bus , so there's no real difference is there , and he is level headed , not one of those kind of lads who show off to his mates and he's very sensible about what he does , so it looks like Mike will be on the road soon . I'll let you know more later . Ami .

Just my luck , New Year and I'm just starting a new side to Pots ................ I haven't been feeling well since Boxing day , was in bed all day , pain , pain and more pain under my right ribs again............warning bells started to ring as it reminded me off when I had my 24 all singing -all dancing gall-stones ............a sort of constant nagging , on and on pain the sort you couldnt sit , stand or lay down with ...............so running my hands over the area , which is just below my right boob ...................OMG ............A lump I must admit I had to sit down and stop the room from moving in and out on finding it , ran my hands over the area again , yep .............a lump all right , quiet big , about the size of a large egg but round instead of oval shapped , pressed a bit in the middle . ...............now wished I hadn't pressed a bit in the middle OUCH ................ OK , OK not panicking , keeping calm , not sweating , dry mouthed ...............if you can believe that then you'll belive I didnt shout to Mark to come here NOW ! So I'm at the doc's this morning first thing as I couldnt get in before now and there is no way I'm going to the local hospital to have them looking at me like I'm some escaped lunatic because they dont understand what POTS is and so dont look, listen and never learn by my conditions when I go to see them ! My Doc ( lovely person ) took me seriously , might be becuase I'm now looking like c*** because of lack of sleep owing to pain and worry .............he had a feel , had a poke ( ouch again) and said 'what on earth have you been doing to tear this ' ...........er , whats this Apparently I've managed to tear the muscle attached to my lower rib , its been bleeding on and off which accounts for the swelling getting bigger then when I rest slowly subsiding as the blood drains away , its the sort of tear you get if you have a horrendous fall .........nope. or you reach for something exceedingly heavy that you cant hold the weight of.........nope. I'm having an ultra sound on the area as soon as they can get a place for me ........I wont hold my breath as I know what the NHS is like after Christmas , but hopefully it wont be to long . So in the meantime I can have my chest strapped and must not under any circumstances : 1: Lift anything heavy ..................mmmmm, ' feed me my rice crisps dear the spoons to full' 2: Reach for anything over my normal reach.............mmmmmmm, ' pass my sox's dear from the chest of drawers my arms aren't 6 foot long ' 3: Try to support my weight with my arms ..............mmmmmmm, 'I'm tired of swinging from the chandeliers dear , can we have some monkey bars in my cage instead ' . Me thinks my doctor needs to re-phase what he said to me or I might take it literally . This is the second if not third tear I have had in my muscles in the past few months , the first was my right thumb from the hand ..............OMG that was and is still painful today at times, the second was my fingers on the same hand and now my intercostal muscle ( I think its called ) so, has anyone else started to tear bits of his or her internal muscles with little or no strain for apparently no reason . it would be nice to see if anyone else is having these problem , mind you I'm a long term Pots sufferer and am now experiencing some rather 'nasty' POTS things creeping up on me ............as well as old age So Happy New year to you all from Ami and her new 'squishy lump' , Mark her one handed ' I can do that for you dear ' husband and Mike her wonderful ' No, let me do that for you mum ' son .............. ah, a quiet , restful life for the next few weeks , shame about the pain Ami XXXXXXXXXXXXXXX. 31st January 2007 @ 5: 58 pm UK time

Just read this post and wondered if these painful parts in the ear are anything like the things my son and I get. We normally get one or two if we are run down for any reason, they start out as just a painful place in the ear , and I mean PAINFUL................ when you look at the place the pain is coming from all you may see and I do mean MAY , because it has taken me years of looking at ears to be able to see the tiny mark that is causing all this awful throbbing , screaming painful ear . All that is visible to someone who has really looked at the place the poor person is pointing to is the tiniest of red marks ....or possibly the faintest of raised bumps , but underneath this mark or bump is the biggest amount of puss that could possibly come from such a small place ! If left after you have tried to 'crack ' the outer Shell of the thing ........well it will grow bigger and bigger and the pain will drive you mad . Its almost like a blind abscess on the outer part of the inner ear , if that makes sense ??? I have never seen one on the soft flat part of the ear only on the main hard parts of the earpiece leading to the ear canal . Once my step daughter had three at once , she came back from her mothers home in agony and begged me to sort them for her , when I looked at her ear I could plainly see a large raised slightly red section to the ear ........I showed her father it but all he could see was a slight red mark , he thought she was exaggerating it all and that I was just playing along with her , so I sat him down so he could see exactly what I was doing , cleaned the ear carefully with antiseptic wash and cotton buds , which sent the poor girl into cries of pain again . Then with the use of a modelling tool ..............er , yep, a plastic modelling tool that can be bought from a craft shop is round and flat edged at one end is perfect for this , it can also be boiled and then washed in antiseptic and stored for the next time .............well all I had to do was to press just behind the reddest part ...............and bang ......you could actually hear it go and the puss that came out of this small red mark was incredible ............the poor girl let out a yelp as it burst , then went quiet with sheer releif . To test if its all out you have to with the pointed end if the tool gently press around the split skin , if as it was this time there was more underneath this one .......you will know as the person will shout out in pain again. Three times this thing went and in all I must have had around half a teaspoon of muck come out of it , I kept pressing around the spilt until it bleed clear red , no white , yellow or green as it was with my step daughters ear , clean the area well with antiseptic wash and then I added a good antiseptic banded cream . When I touched the area again to put this one .......she smiled !!!! Not one little pain , nothing . From then onwards if any of the children had this ear pain I sorted them out , my now ex husband would never believe that I could see them in ears , in fact I can spot one at a good distance now before Mike has a chance to say ' I think I may have one of those painful things coming ' We did try antibiotics for them once , but the drug took so long getting a hold on the thing that Mike in such pain started to try and deal with it himself , not a good idea as you cant see in your own ear , but the pain can be so bad you will try anything it stop it ...............I know I had one that no one could see , luckily my GP could and with a sterile needle burst it after 6 days of sheer agonizing pain and feeling sick with it . So when someone comes to you with a painful ear thats driving them mad and you say you cannot see a thing .....get a magnifying glass and look for a slightly raised bump ....a slightly red mark or an enlarged pore in the ear ........use the blunt end of a cotton bud without the bud and gently touch around the area .......when they yelp you'll know you have found the thing ..................good luck Willows.

Hello all again. Its been sometime since I last posted on here partly because I have been so up and down with pots , the attack kicked off a very bad session for me and I've been in bed one day , out two , back in , out again and just so behind with everything , but I'm now sort of back on my feet now . UPDATE ON MIKE........... The two adults who attacked Mike are still walking around , no one would come forward from our village or the village over the water , everyone is afraid of the repercussions that these two men and thier so called friends will do if you speak out against them at all . What I didnt tell you was on the Sunday when I went to the man's home who did the worst damage to my son he stood almost nose to nose with me and quietly told me that if I did anything to them via the police , well they know who we are , where we live and would make our lives **** ...............................just to prove the point without us knowing about 10 days later some one came over the back garden wall and turned on the gardeners outside toilet hot water tap ......full and as we where out at the time we where unaware of this . When we came home and couldnt get hot water from the inside taps at all , having checked all taps in the house then went outside , if I'm right this tap had been running full on for around 3-5 hours I hate to think what the bill will be for electric this quarter . When I next saw this head man as I passed this man he stopped and asked me if I'd had any nice long hot baths lately so that I would know its them . Living like this has added to my pots , I haven't told Mark or Mike about the threats and the intimidation that these two big men are doing to a 5 foot 2 inch disabled woman who cannot do any harm to them at all , so brave of them , so clever of them to think they are going to get away with it , but of course they are not as we all know 'what goes around , comes around ' and some day soon they will be in the same situation as one of the poor people who they have done this to in the past , and I wonder if anyone will go to help them, I dont expect so , which in away makes me feel sorry for them both for they must really have an awful life mustnt they ? Living all the time wondering if one of the people they have stolen from , beaten up or abused in the past , will turn on them . This control over the two villages they have will one day I'm sure come back on them when they call for help and I know we should always put aside things like this and help our fellow man when they need it , but as these two man act like animals to all round them , well I'm sorry but if a dog bite me and my family and others around me , then when it went to bite another person that person picked up a stick a whacked it , I'm afraid I would be saying stop , dont do that or reporting them to the RSPCA , sometimes this is the only way you can get through to someone or something that has so much anger , violence and sheer evil in them , which as I said makes me feel sorry for them , it must be awful never feeling happy and not being able to walk in the village waving , smiling and talking at friends and neighbours . As for Mike in 'himself' well he is back to his smiley , none stop chattering and full of fun self again , but he is now seeing a counsellor as he has been getting nightmares at night in his sleep from the attack , its like it keeps happening over and over again in his sleep and he keeps calling for Mark and I to help him . This is why I sleep little at night now and am up at 5 am to write this , Mike had another session tonight earlier on , so I can speak to him and calm him down whilst his still asleep , obviously his sleep is not recharging him 100% and he's a lot tireder lately . He's now going out and about again in our village , none of us have crossed the water to the other village and we are not likely to until May or June of next year .His local friends from his old school have ll supported him 100% and if he ever wants to go anywhere and is just a bit unsure , well it normally ends up with 4 or 5 of them all going .............and then ending up here for hot chocolate and biccys by the fire . As the village lads have been so good to Mike this Autumn Mark and I are doing a big Christmas party for them all here, lots of food , tons of my speacil none alcoholic cocktails and some very interesting games , such as adult pass the parcel which Mike has been in fits of laughter with then Ive typed out the pieces of paper that go in between the layers , some of the things the lads have to do have had Mike rolling around on the floor ...............so he's well looking forward to this and of course Christmas , but Mark and I have decided that until his back is sorted he will not be getting his bike, which he was disappointed over , but then when I said that would be on his 17th Birthday in march ..............he started to dance around the lounge ..............yep, Mikes back thank goodness. Mikes injures have not healed as expected and he is in a lot of pain in his lower spine , so much so that he is to see a surgeon in Jan 2008 . The damage these men did when they had him over the low wall was not just to his head but his lower back and his knees, which he already has problems with , so he's now in knee braces and cannot do any real swimming , football or sports at college until this is sorted . As for college , well my son has said that no way are these tow low-life going to stop him getting where he wants to be in life , he's still on course to be one of the only two lads who complete the course with honours , Mark and I are just SOOOOOOOOOOOOOOO proud of him , not just because of the sheer hard work he's put into the college course , but because he isn't going o let this stop him , as he said to me after thinking about college and jobs . 'One of the men is a cook at a pub and the other works in a garage , do you know mum , it would give me so much pleasure if one day in the future I was the forensics man who found the evidence that had both of these thugs, these low life who have brought such misery to so many people in this village away for a long , long time . It would be so good to stand up in a witness box with them in the dock and be able to sue all the knowledge I'm learning now , against them both ...............and see them squirm , go pale , look worried . They have made me want to finish my courses and get my degree and then doctorat more now than when I started ' Anyhow I've said all I am going to say on this now , well except if Mike has to have any corrective surgery or stuff like that . So Happy christmas to you all , have a great new year and may 2008 be a lot happier for you all and for us to , I dont mind saying that this year has not been my best . Meeting Corina and her family was the best of 2007 and in 2008 I'm hoping that Corina and her Husband will be coming to the ball , which is something really wonderful and extra speacil I'm looking forward to , along with Mike and Mark who are also helping me with the setting up of the ball, food etc ..............roll on 2008 . Love to all , thinking of you my fellow ' POTTIES' hugs, smiles, waves and a big kiss .................Ami , Mike and Mark .xxxxxxxxxxxxxxxxxxxxxxxxxx

Hello all . Did you like the title I've been stuck in bed, up and down like a yo-yo for the past 5-6 days , so unwell and unable to stand for any lenght of time I've been unable to get a shower or a proper wash and have been feeling so grubby , the title is rather appropriate dont you think . I went to see my doctor today as I've had so many 'full blown' pots attacked in the past few weeks I am getting very worried , I dont know about you all but I'm moving forward again , well one cant expect to keep at this level for ever can you . What is most frightening is the inability to swallow now when Pots is full-on now , its so awful , I've been having bouts of this for sometime over the years but over the past 5 days or so I've not been able to drink much .............out it comes again head down the loo ............OMG not a nice thing , and as well as that I cannot keep things in lower down ............out it comes the other way again and so I've now lost around 6-7 lbs in weight and have this level as a steel ruler flat stomach ! It appears that when the full-on session starts my digestive system closes down completely , if it lasts for just a day I'm OK , but if it carries on I'm in big trouble what with the 'flue like symptoms' hitting me in every single joint I have and some I never knew I had ..........the vomitting for England ......should have gold medal by now ............and the sore bottom symptoms , ( cheese grater comes to mind ) ........blimey now I know how a baby feels , bring on the nappy cream ouch, ouch , the excessive sleeping , vision all over the place , headaches , feeling cold ............ami , cold blimey she must be ill !!! inability to eat , lay flat , walk , talk .........wow this is a good one , I called my boss on day 2 of the big pots session and she thought it was one of those 'strange phone call' if you get my meaning , she did not recognise my voice at all and when I said its me Ami , well she immediately thought I was having a stroke or a heart attack mmmmm, hubby's said almost the same my voice goes very weird , mind you I'm weird all over so whats new ! So girl here's fed up , hungry , sore bottomed ( still ) and unable to eat much at all , its almost as if I've had my stomach cut into 4 , yes, 4 I can manage to eat say a slice of bread and I'm full or say half a baked potato and thats it , lifes getting rather 'weird ' here in the South , must be the water or the weather , drugs may be ...........nah , can't be they have been checked and re-checked by doc , so friends it looks as if I'm having a big pots session,mmmmmm hope it turns out to be a roasting dish or a huge casserole with a lid as i could do with one of those for christmas use ! Well a girls go to laugh at herself or she'd cry , tired again now and need some sleep if I can , so its Bye -bye from a clean Ami , smelling of baby talc and nappy cream .............OMG what has my life come to

Hello all . Its taken me years of trying to get my condition over to people that has lead me to telling people the following ............ I have Pots (I laugh) No , not stainless steel or Pyrex and I'm not turning into a casserole dish (this brakes the ice and makes people listen) Pots or another name for it is Autonomic Nerve Dysfunction effects the part of my body that controls the way I responding to things , like noise , fear , heat, food, ............... for instance ....... when you get really frightened the hairs stand up on your neck .....( I normally get a nod or a Oh , yes ) when you get hot you sweat ( nods again) when its freezing cold you shiver .......well its this part of my body that is not working properly , it also controls all my main organs , which means I have lots of really horrible conditions all over your body to deal with ( I am normally asked then what are the hospital or doctors doing for me ) To this I explain : .............no one can stop POTS happening , there is not cure for it , but doctor ( I always say her name here ) has now read up on the condition from the net and taken loads of advice , so she can help me make the best /most of my life . I also tell them look up 'POTS PLACE' on the net and tell them to read some of the posts so that they will have a better understanding of how cruel this condition is . Some people just stand there and stare , some people ask other questions then like one lady had thought for sometime I was just being down right rude to her , until the day I fell down in a shop she was in. When she next saw me she asked me outright what was going on , I told the above and then she said ' is that why one day you look fine and the next your as white as a sheet and look like death warmed up , cant seem to see me or understand/ hear what I'm saying ' when I explained that it was the reason , poor lady was so upset , she has now set about informing our village that I have this really strange and somewhat rare condition and that if I do ignore people ................I'm not being rude , I am just in a POTS world . I did try passing out cards with information on , but most people I know want to be able to talk to me about POT and ask questions , some quite silly questions , some I had never thought of before. Anyhow this is how I get my condition across , it works well as people dont feel uneasy when I make a joke of it in the beginning and the village all seem to have a better understanding of why I'm not around for days on end then just seem to pop up again . Willows.

Thanks for the information Sally , yes ,we did get his head seen to ..................mmmmmm, thats does not sound right but you know what I mean ! The strange behavior is partly to do with 'our past' , if you have ever read my story in the history section then you will understand that being attacked like this has brought back some rather painful, distressing and violent memories for Mike, his Doctor thinks that he has now realised what I went through for about four years and why like him I became withdrawn and quiet and unable to talk or face friends . Letting people know how this effected you and for a lad Mikes size and age letting them know just how afraid you where of the whole thing and in away ashamed of yourself for not doing anything , for being used and for being so naive, well its all just to much at this time . He' so much better today and has been talking about the May 2008 ball , has asked if Dan one of the lads from college in the press photograph I have , his best mate at the college and someone who like Mike is a 'good, clean , caring lad' could be his assistant manager ..........along with this very, very pretty blonde haired young lady that burst into tears twice for Mike ( now thats a good sign )once on the Monday when I told them in college and again when she saw him . So if he's talking girls and smiling ................he must be at last getting his head around what happened and thinking more like Mike again . Tonight , with Mark and myself getting all churned up inside , waiting for the phone to go ( shoes on ready ) with car keys by the door , Mike went in o the village with 3 of his village mates not leaving his side , went down to the yacht club and ...................sat and talked to one of the young lads that those 'other' college lads attacked ! ( so many lads from so many places in this guys ) He was in the village or rather the yacht club for 2 hours and came back looking as if a HUGE weight had been lifted . thank goodness for that , and is now looking less grey , head more upright and eating better . On Monday he has said as long as his knees are not to painful he will be going to college , I'm going to take him in and pick him up ...........no, not to 'mollycoddle ' him ( now thats an English word you may not know ) but Mike has to pick up all the sponsorship cash which could be over ?500 , a nice amount for someone to tell his mates about and get them to 'take' this from Mike on the way home isn't it ? Especially if the someone happens to be one of those 3 lads who caused all this in the first place and are now looking very embarrassed by it all and have changed their statements to the group they are in so many times no one believes a thing they say anymore and all the group ( thats the group Mikes in for college training ) are behind Mike and are really angry with them over this whole thing . As for anyone being prosecuted , NO , we cannot prove that the two adults did this to Mike , even though he saw their faces , knows them and was screaming at them whilst they did this to him and they where shouting back that they knew it was him , but so what and even though we have a shoe print on his coat and finger prints in mud around this neck , coat collar , sleeves etc Mike would be standing alone to take this lot on and the police have said its not the sort of thing he would want to do given the fact that the adults who did this to him are on police records for violence, muggings, and burglaries already , they are like us afraid of revenge ...............unbelievable , revenge on Mike for beating Mike in the first place ...... ..........what has the world come to . Its a case of 20 or so of these nasty cowardly adults friends all saying that their friends who attacked Mike didn't go near Mike, see him , talk to him or touch him , so its Mike against 22 adults When I went to their house on the Sunday morning ( on my own ) and confronted the main attacker , his mother , sister and girlfriend all there and butting in saying such rubbish to me ( I had to tell them to shut up and listen or I'd call the police there and then ) it was so obvious that he did this, even his mother couldnt get her story straight , his girlfriend who claims she talked to Mike a few minutes after the even said he was Not injured , not hurt and nothing was wrong with him , well she couldnt actually put him in the right place at the right time .............and she had no idea Mark was there watching her as she stood talking to her boyfriend ( the main attacker ) this adult repeated something to me that only the person who attacked Mike would know and he laughed in my face as he said it . I cannot tell you how I felt knowing that this man actually admitted to me he did it then told me to get witnesses to stand up against him in a court of law ............I know that one day he will have to face up to all the things he has done to people , old and disabled people and young lads in our village , then we will see who is the coward and who is the strong person . The 3 lads all under 15 who where also hurt by these 3 lads who we had here , well their caring , loving parents have done nothing and will not even speak to the police and haven't even got the kids treatment at all . As well as this 3 other younger lads from around the village got attacked by other people in the village that night when they thought that they where Mike and the lads who where staying here !!! NO, there parents will not talk and all in all the two twin villages have closed down , closed doors, done nothing , said nothing and will not speak to the police about any of the whole affair , only our family have spoken out , named names and made statements about it . So Mums just doing her security job and at the same time sorting out the two assistant managers jobs with his friends. First job for all of them is Wednesday at the Holiday inn in Plymouth , helping to set the ball and giving ideas so this will be the biggest , most spectacular , most lavish ball that our city has ever seen . I'll let you know what happens over the weekend as Mikes asking Dan and Nikita to come over for the day to talk charity work and 'other' things . Take care all and think yourselves luck that you done have to walk past the house of the man who did this awful cowardly thing to your son . Ami .

Oh , Dear ...............he couldnt do it . Today we asked him if he was going to abseil ?? last night he said he would , then in the morning he said NO . He looked really grey/yellow when we got to Plymouth city at about 11 am , but I had to take him ( Mark, myself Judy my boss and other CHSW who he knows there for support) as his college mates all wanted to see him. Unfortunately Nikita , a rather smashing young lady who likes him , almost burst into tears again when he came over to her , he really does look bad at the minute and his left eye socket / lower under eye section /nose and down by the left side of his nose is red/yellow/purple and swollen still , so in all you could say all who saw his where shocked , mind you he got so many kisses and great big squishy hugs from the girls and many of the older lady and as for his male college mates, well you know how lads greet each other at this age , normally all sort of 'grunt , head nod or something that you think they are saying about a cat along the lines of ' us aaatt' or yoatmayt' ............nope , they all wanted to do a sort of half body hug and a pat on the back nice to think that they seeing Mike looking down and unwell had the guts to do this with so many people about ( around 100+ at abseil base ) The 3 cowards turned up later than all the rest of the group and made sure that they didn't look out way or come near us at all . Apparently they have now changed their stories at college again and said that they didn't leave Mike at all and that he didn't get a a mark on him , no one touch him , So I'm asking the police for the official statements given by all 4 lads ( including Mikes ) so that this can be stopped right now , Mark is furious , but as i said before long they will have changed there stories so much over it that no one ill listen or believe a thing they say , not that they are doing that now . The BBC spotlight south west camera crew and the local newspaper turned out again , along with a number of army officers who all came over to me +Mike + Mark and made themselves know , rather to the amusement of my boss. Marks taken some great shots of the team , so when he's sorted tomorrow Ill, stick some on my photo-link site so you can see them ............and possibly a photo of Mikes face ( 6 days on that is ) Do you know what really shocked and upset Mark today thought ? Unbelievably , one of our older friends that we often spoke with on Citizen Band Radio ( Marks has a huge one in the house ) who we haven't seen for about 2 years because of all the illnesses with us all ..........was there he had come to cheer on his only grandson who was abseiling today ............... who was in Mikes year at the college ............abseiling for CHSW and who was the very boy who walking into the house and started it all . No, we didn't say anything to him , names or places etc , how do you tell an elderly man in his late 70's that the grandson who he idealises helped do this to Mike who he thinks is such a wonderful lad and hopes his grandson turns out something like Mike !!!!!!!!!!!!!!!!!!!!!!!!!!!! you dont , you just keep your mouth firmly closed and smile . Mark noticed on the way home Mike , who had a baseball hat on all day to keep his face in shade , was head down again and this time quietly crying . I think I will have to take him to the docs again soon as he might need some professional help with this . I'll post in a couple of days with hopefully better news, taking him out today at about 11 am to help me book a ballroom for our huge charity ball in May 2008 ,so lets hope that brings him out a bit . Ami.

Tell me about it We have a friend who will either come round or call me and ask if ...........say , a headache she has could be the start of POTS because she looks unwell , when I ask her 'when did it start ' I once got a wonderful reply of ' this morning, I woke up having drunk a whole bottle of red wine last night as I was up to 2 am celebrating '..................... is she thick or something ????? But its not just a headache , its a limb ache, neck pain , blurred vision ( try taking your head out of the loo once and a while ) she has even started to call and ask us if her 8 year old daughter has it now , because Mike my son has been tested , so yep..........she's also asked who she should contact for testing of them both We have tried to talk to her on this , but she's adamant its a case of if Mike and I have it then so must her daughter and she ............as we live so near . .......slightly crazy mother on her way folks Oh , yes I have told her 'its not catching ' but its almost as if she is wishing she had it and checks and rechecks herself and her child almost each day ................worried , you bet , but not for POTS , more likely signs of that condition called ' something??????- syndrome by proxy ' where mothers or fathers do things to themselves or there children so that they are in the limelight all the time . I won't have her over here now , its a shame I know , but all she does , even when I'm feeling fair to middling is go on and on about my drugs ( what kind , amounts ) how I feel , how I do things ...............STOP IT ..........neither Mike, Mark or I want this 24/7 its just not wanted , I dont know about you all , but then I'm feeling a bit on the good side I dont need someone talking about POTS back at me all the time ............nope, I want to put on a glorious bead encrusted gown and waltz around the Ritz hotels ballroom with a tall dark stranger ..............well in my dreams . Love Ami.

I struggled for 2 years with pain so bad I couldnt eat , sleep or do anything but go yellow. They left mine to long as NO family history , not over weight , slim, fit , healthy and just 30 ...........it exploded whilst I was taking to a locum consultant in the hospital............emergency operation = 24 gallstones ( cholesterol based ) + a foot of intestine removed as one had logged itself and made a right mess of me. A complete nightmare , it took me about 4 months until I could do anything properly after this as in an effort to open me up and stop the bleeding etc , they broke my ribs and I have a huge scar of over 9 inches from between my breast to my navel . This wouldnt heal and kept coming open + infection and weeks and weeks on antibiotics , like something from a Stephen King book. You get it out ASAP , once it starts you cannot really stop it even if you loose all the fat in your diet ............and thats just so hard to do as company's/manufacturers hide it , I for one wouldnt want to spend the rest of my life reading every single packet/box/carton side just so I could eat . I do find that I cannot digest fat substances properly now and if I eat to much on the fat hidden inside somthing I have problems with my whole digestion system for a few days . Good Luck beth , I tell you the pain I got from that was very bad and people however much they try have no idea until they have it just how much gallstones hurt .............give me child birth any day . Willows.

Thank you so much Corina . A number of Mikes own Village friends from his old school have been calling round each day to see him , in fact we cant keep them away at the minute. Mike really wanted to go out tonight at about 7 pm , he had 3 friends with him , went down the path , out the gate , down the steps and then sat down on them .................Mark watched all from our CCTV thats on the garden/house/ road now . About 20 minutes later and with much encouragement from his friends , mike walked about another 50 yards to the gate of the churchyard and stopped again, then had to come home , all the time his heart was going mad and he was white , sweating and and looking very upset and afraid when he came in ............but then , its a start at least . He just couldnt go any further , he said he wanted to be able to see the house ( which you can from there ) he wanted to be able to call for help from us . I am very worried about him , this is not my son . Today at 12 noon we have his event , this abseil thats for CHSW our charity, Mark and I really want Mike to do this , so what we have arranged is that my area manager Judy , Mark, myself , our very tall .......wide.....and .....massive friend , who runs another group for the charity is there and the army sergeants /men are all aware ............and fingers crossed we will get Mike to the city centre , on top of the building and get him to jump for CHSW .............I tell you the cheers that will go up if he does this will be heard in the Netherlands let alone across Plymouth ..................... so keep your fingers crossed all . Ami. XXXXXXXXXX