willows

Today I received a letter from the hospital about Mikes TTT at first I didnt take it all in but basically my wonderful hardworking , never hurt anyone in his life , caring , honest , do anything for anyone ............love of my life , has what I have . and I'm devastated. I haven't said anything to him yet as last night ( 5th November ) he went out with one of his best friends and watched the fireworks in our village coming home just after 9 pm looking pale with dark lines under his eyes and I didnt have the heart to tell him when he obviously wasn't feeling very well . He's due to go to college tomorrow for 3 hours studying criminology and sports rules , but I think given the circumstances I'll give him the morning off and we can have a mum & son day , which he loves as I tend to do all things he likes to do like looking at motor bikes, clothing and stuff to go on bikes , you know all the sort of boy things lads of this age do. He needs a winters coat and a new helmet as his nice bright shiny new one which I bought him just 2 months ago is fine for the good weather but he's finding that now its cold his nose and lips are going scarlet and he's in agony with them , so a full face helmet is needed , and the big blue one I bought him can be used for summer time riding. So tomorrow I have the awful task of telling my son he's got what I have , I feel so guilty and I cannot believe that out of my three children that the one who has it is the one who just doesn't deserve it .............yes I know what your all thinking , how can she say that any of her children deserve an illness such as ours . Well if you'd have ever meet my eldest or my middle daughters in person and spent anytime with them you would understand why I say Mike is the only one who should never get it . Both my daughters have treated me appallingly since they where old enough to ask for money ( 11-12 years old ) one hitting me and one verbally abusing me because she couldnt get her own way , which is why I dont have anything to do with either of them at this time . Mike has been a witness to all this and in his time tried to stop my middle daughter from hitting me , but it got so bad that we had to do the 'tough love 'on her and she is now banned from any form of contact with my husband , Mike or myself until I feel she has mended her ways and shows us all some respect. So think of me tomorrow at around 12:30 am as I'm going to take Mike for his favourite meal of all times a Chinese at the wet wok in Plymouth which is right by the waters edge . Hopefully he will take it well , as well as anyone can take something as devastating as being told one day you could end up like mum . Ami .

Thanks for your ideas Firewatcher I may just do that as I am a member of mugglenet and had the great pleasure of being the muggle of the month one year , cant remember which year but I'm in there in the UK listing .........great fun or what !!! I've been looking at the charities events and spied that on the 20th November they have a christmas fayre at the large hotel that is very near to us and who I know the owner of quite well , so hopefully when we all go on Monday armed with a load of my photo's of the castle etc , well if I can get my act together in time I think part of Hogworts castle could possibly be taken to the hotel and set up . I've most of the customs ready ( just need a press and a good brush ) my birds are well feed and ready to hoot and squawk and I'm so tired of not being the 'lady with the phoenix' or 'the lady with the owls'....... the owl lady ..............Hogworts lady ...............the lady Halloween lady ........................the good witch ...............and many many more names I cant tell you just how nice it will be to don my black dress, hogworts cloak and Professor Mcgonagall's hat , armed with one of the wonderful limited edition wands I have in store and with Fawkes my trusty adorable bright orange phoenix on my arm ..............set out amongst the children telling them stories and giving out sweets and baby finger puppet animals........................I'm so excited again . Mind you I've not much time to get my act together if I want to give out sweets as I normally pull in around 20 kilos or more from companies around this area who want to help the charity I work for , so I'd better get off here and get writing to some local sweet companies for help as I've just 18 days to get myself sorted ....... yippppppppppppppppppeeeeeeeeeeeee I'm off to get my broom and fly to the nearest cash and carry . Love to all Ami , Fawkes and the owls.................xxxxxxxxxxxxxxxxxxx

Hello my wonderful friend over the water Here's the first incentive for you ............................ You have to be standing by your front door to greet Mark, Mike and myself when we take the long 36 hours trek across the water to see you and your family and bring your Christmas gifts I am still working hard on the travel plans and we are all hoping that we can get to you around first week in December . We will stay for two nights in a local hotel so you dont have to worry about where we are staying etc. We will also be taking you all out for dinner ............so second incentive is to be able to sit and eat with us somewhere nice .!!!!!!!! Also , if you contact your mum and dad and they want us to bring anything to you for Christmas , well we only live around 30 mins from them so we can quite easily go down to them and pick up anything ..............and then if you want anything taken to them ...........well we can go back down again when we get back to the UK and be Santa for you I've nearly finished your picture and hope to bring that with me ..............but as I said 'You have to meet me at the front door ...........standing up ' that way I can give you a huge hug !!!!!!!! See you soon .............love to the boys and your nice hubby and tell them we will be seeing them again soon Ami xxxxxxxxxxxx

Having just read your post on night time chest pain I know exactly how you feel because here I am up again because of cit on average I get a low level one( pain at 4-10) 4-6 times a week night times and touch wood I haven't had a day time bout for over 5 years now . OMG these are by far the worst and I really dread the day I have another one . I can feel them coming sometimes , I call it a 'shot across the bough ' as I feel this slight hick-up in my chest and a sort of slight pain almost stinging ( but not ) I've also been to the ER many times after the pain has reached 9/10 and I've been grey , sweating , dizzy and about to throw up ...........with pain in centre of chest into the middle of my back with it radiating into my neck , left shoulder , down my arm and into my hand . By the time the ambulance gets to us (35 minutes) and I've been rushed to hospital ( about an hour in total ) my heart has slightly levelled out as the excitment has boosted it again . My problems is quite simple , I have a hole in the back of my heart that leaks , two valves that leak and I'm bradycardic with a day time heart beat of under 60 most of the time, at night when I lay down it drops to below 40 and even below 30 ( which is heart block ) and this is when all the pain starts , as you have said laying on your back is not a good idea and I dont understand why myself and I've been like this since I was ..............13 years old ( thats 40+ years of it ) I now use a GTN spray to lift my heart beat , but sometimes it just doesn't work and the pain is excruciating , so bad I've actually begged my husband to hit me to knock me out yes , I know that sounds stupid and I dont recommend this to anyone , but its the pain , it is so overwhelming and so bad I can cope with all sorts of pain , which on an everyday basis I do , but this chest pain is something else and I cannot cope and cry holding onto Mark almost tearing at his clothes trying to somehow stop it , its just devastating and I hate it so much when I get an attack . Mark by the way won't dream of knocking me out so I end up almost blacking out with pain and lack of oxygen (just 75% and dropping at times ) I've had so many years of struggling with hospitals and ER's and heart consultants over this and had so many EXCUSES as to why this happens including : My oxygen level is very low because I was :........ holding my breath !!!!!!!! My heart beat was slow because I was :..........Holding my breath to make it slow down !!!!! And I have also been told that my heart beat and oxygen levels are low because I'm hyperventilating ( breathing fast and short) which accounts for my conditions and that I should stop doing this as its silly for someone of my age !!!!!!!!!............even though I've been trying to talk to the ambulance men and they have said 'shhhhhh , just relax and dont speak, we'll have this sorted in no time ' and they have reading of all my low heart beat and oxygen levels on paper print outs from the machines I'm hooked up to Its almost as if the cardiologist are afraid to actually say ' you have heart problems' and I think I know why ! Many years ago when I had my second child I was not treated correctly and afterbirth was left in me with terrible results ( I nearly died) .One of the problem was I had heart failure and then a heart attack and ever since then they have tried to say that this didnt happen ..............er even though its written in my medical file in black and white !!!!! My own GP keeps year after year of my pain and suffering asking them , even begging them to give me a pacemaker but do they .......NO and so I get attack after attack and go into hospital and guess what ????? The staff on the ward now turn my monitors off as they get sick and tired ( I actually heard them say this once ) of having to lower the alarms because my heart is beating so low they keep going off So that tells you something about the sense of the Uk's cardiology wards and the help that they want to give to someone like myself who has POTS and there total lack of understanding and care ........................my husband has tried so many times to tell them but its as if they think my husband , son , ambulance men and myself are all mental and lying about my condition , I feel so sorry for them in away because if I'm treated like this what hope is there for others who get POTS in my country and in my area of Devon and Cornwall . I will be thinking of you , keep at it and keep pushing for help and hopefully someone will actually listen to you all my love and hugs Ami .xxxxxxxxxxxx

Some of you may know our family was very badly let down by the charity we had been raising funds for over a period of 5-6 years in May of this year and we all suffered by thier lack of care and understanding to us . Mark suffered a broken hand and was so ill by Sunday night he had to spend 2 days in bed recovering , Mike was exhausted beyond belief to the point he was in tears and had lost 8 lbs in weight in two days and I suffered 2 angina attacks and had constant out-of -control sweats whilst trying to work the whole weekend without help from what I call 'grown ups' it really was the biggest let down I have ever experienced in my entire life as a fundraiser and I was in tears for three days afterwards and still cannot believe that this happened. We all felt that the person who was my immediate boss had not told us the complete truth about the weekend and we had all worked ourselves stupid to make something happen when we didnt stand a chance. So on returning home on the Sunday evening , cut , sore , shattered and so very angry by the sheer lack of help and even concern about three disabled people who had been on thier feet for over 15 hours that day ( I was on pethidine by then) well we all took a vote and felt we could no longer work for the charity , within 36 hours of being home we all resigned . Since then I have been looking for a charity that is local to us and is for children and young adults , I've talked to a few charities and had a look at some of the charity shops and quite honest some of them I felt just wouldnt be able to cope with someone like myself , you know a bit crazy with ideas and full of life and laughter, its bad enough for my family when I get going, let alone strangers Well having left a message on a charities answerphone last week I got a call back from the manager of the fundraising team for this particular charity OMG talk about fits of giggles between us The young woman I spoke to I thought was called 'I'm-an eclair ' well that was exactly what she said on the answer phone .............. and when she asked for me by name to hubby ..............as he came up the stairs to give me the phone he was laughing so much he nearly dropped it as she had asked for 'Aidy mealy no-bells rews' it was a good job I was sitting down on the bed at the times a I laughed so much I nearly choked swallowing So, I think you can say from this somewhat strange start to the conversation that we 'hit it off with flying colours' we are so much alike this young lady might have been my middle daughter ! Next Monday we are all going over to see the school , its for children and young adults with mental and physical disabilities and is about 10 miles from us , it has been going for about 200 years and has a very good reputation for its care and its support of the family as well as the children . I told them about 'Hogwarts Castle and all I have and what I do and I think you can say I've shocked them, well after all how many of us can say we have a 30 x 20 size castle with owls, Phoenix's , wands and snakes hidden away just 2 miles from the actual school and all ready to raise money for the kids ???? probably one person in the world and that's ME With Christmas coming up fast I'm hoping that we can sort out a weekend when 'Hogwarts' can once again fly its banners and welcome the children of Plymouth to my wonderful crazy world of harry potter , possibly 'father christmas ' can take over the whole building along with wizards and elves in full costume giving out sweets to all. Its to late for Halloween this year , but may be next year ................but I tell you what finding a charity thats so near , so nice and so willing to actually help us set up and take down the huge castle and all that goes with it ( it takes 36-48 hours to put it up and dress up all 3 rooms properly ) well its something I've been longing for since the awful time we had in May of this year . I've sat 5 long months now without something to keep my mind active , something to look forward to ,which has some meaning instead of just click, click , clicking away on my lap-top writing my books ....................heaven is all I can say , heaven, that I've found a good local charity , a charity that is willing and able to give a real helping hand setting up the castle and taking it down and at long last something to keep my mind active and the whole family feel useful again . If you want to have a look at the charity site follow this lead (if the site doesn't mind me putting this lead up please) http://www.damehannah.com/ Well I'm off to bed in a few minutes as I'm tired now at long last as my vast quantity of night time tablets have actually 'kicked in ' after 3 hours !!!!!! Night-night all or good morning to all across the water .................Ami or 'Aidy mealy no-bells rews'

Bit of an update .............. As of yet I'm still not sure if any of us can fly so I'm now hoping that we can get a ship from Southampton to around the med , which is better than nothing as they say . I've just seen the long DVD of the new Royal Carribean ship called Freedom of the sea's and OMG what do I think of it ????? Do ducks fly ................do fish swim .............and do I want to go on it next autumn ........big yes please So at this time I'm still putting away bits of clothing and shoes from my wardrobe that I have never worn or that I've bought for holidays and special events ( which I've not been able to go to owning to being ill ) so I've a nice LOT ( understatement ) of things to wear from : Summer day dresses, sandals, tee-shirt , trousers evening jackets (sequined and bugle beaded and evening bags . You see I have this habit , which at times drives hubby mad but is my one true vice and what is it you ask ..........well if I see something in my size that I like in the sale and at a silly price I'll get it , but only if its something utterly spectacular , take for instance A stunning shoe string strap bodice dress with handkerchief ( just below the knee ) hemline ...........in stunning bright red lined pure silk chiffon OMG its just breathtaking and with black patent semi heeled shoes and a black evening bag and some of my jewellery perhaps hair up ( whats left of it ) this simple dress will turn heads because of its cut and its sheer style . When it first came into the shop ( very well know shop that sells expensive dresses in the UK ) it was ? 275 ($550 ) and I was not about to pay this for a dress which I might wear only 2-3 times a year if I'm lucky . But when the sales started it dropped to ?175 ( $350) then ?125 ( $250) then ?90 ( $180) then ?60 ( $120) and finally I hung on and hung on going in just about every day or sending my son in or hubby and I actually bought the dress in my size for the grand total of ? 32 ( $64) ..................bargain utter utter bargain , yet when its on I feel like a million dollars and as its red the colour I love in dresses and because I have almost black hair it looks 'me' if you know what I mean ??? So with Christmas on the horizon I'm asking son and hubby for items of a holiday list , well I know my sons already bought me the 2 piece in silk and sequins so thats another thing i can cross of for an evening dinner on the ship as all I'll need to go with this is a pair of pale pink silky trousers and it will look very elegant ( well I can hope can't I ! ) So I'm looking about the inter net at the minuet and marking down sites to send hubby to .....you know a gentle hint ( ha , ha , ha ) Ami xxxxxxxxxxx

I thought after all this time I'd let you all know how Marks doing 'foot wise' that is. Well after many , many appointments at the hospital they actually admitted that he had had a bleed in the foot after the surgery , Mark told them at the time something was very wrong , but like most 'know it all hospitals' we the patients dont know what we are talking about , unfortunately Mark did and now because no one took notice of this he has lost the use of his foot by 80% . This means that as he walks unaided his foot flops instead of picks up as you take a step . This means that he now falls over his own foot .............. so he has this foot + ankle brace to wear on the outside of his trousers which is attached to his boot by way of a special sole in the boot which he stands on then two side braces coming up his ankle bones and this is then attached to a circular brace with Velcro around his mid calf , a bit Ike a old fashioned brace the kids used to have to wear if they had polio. With Mark getting up early each morning he just doesn't rush to put on his walking boots and so now suffers the consequences almost every day at sometime between 7 am and 9 am or until he's hit the floor enough to force himself to 'boot up ' I know I shouldn't laugh but I cant help it , I lay in bed some mornings and hear Mark go ............ Trundling along the top landing and stop then creak onto the top stair , one , two , three steps down he quietly goes , four, five , six .............then bump... bump ....bump bump bump bump ......splat as he hits the entrance hall at the bottom of the stairs .You then hear muttering and scrummaging about with the occasional word which I wont repeat .....silence .......then the dinning room door opens and Mark starts his walk across the nice smooth wooden flooring , flip, flip, flip ...........BANGand this time the noise coming from him is not so nice and quiet and the words turn the air blue well I've got to admit falling smack on my back onto the wooden dining room floor at 7 am in the morning when your half awake and sore from just falling down 6 stairs isn't much fun ...............but as my hubby is know to 'bounce ' and never really hurt himself I tell you what It makes wonderful listening a nd boy oh boy does it kick start my heart to going a bit faster as I roll around th bed creased up with tears running down my face with laughter , that is until a face comes around the bedroom door with a cup of coffee attached to the arm and Hubby with wide eyes watches what I now appear to be doing ...............'er, just looking at the inside of the sheets dear' I lie as only my eyes are showing over the top of the now slightly damp top sheet from where I've been laughing so much . He knows of course that I lay there in utter laughter as he's caught me doing this before............but then , he does exactly the same to me so he cant moan and in any case half the time he's laying flat on his back on the floor he's creased up with laughter himself . But , it must look really funny from the windows when the post,man has delivered early mail to our house to find Mark half dressed laying on the floor laughing his head off ......at nothing !!! Well ours is a somewhat strange house , but exceeding happy or is it just that we are all mental Nah ..............Ami xxxxx

Well , what a day I've had Got to the hospital and this small man came walking pass hubby and I as we sat waiting for the lump man to arrive for his appointments , now I'm only just 5 foot 2 inches tall so this doctor couldnt have been over 4 foot 10 if he was lucky or standing on tip toe, but as he walked past I instantly knew it was him, dont know why , but he just looked like a man who would sort lumps and bumps out Anyhow got in and he asked to have a look at Gilbert , he smoothed my arm down and up and up and down then stood back a bit and looked at Gilbert again , came around and felt the other arm and then eyed up Gilbert to my normal arm ............back and forth he went then stopped and said' mmmmmmmmmmm, I dont actually know what it is ' Oh , dear thought I here we go again I could have asked a local taxi driver for his opinion on Gilbert and it wouldnt have cost me half a days travel or ?20 worth of petrol to do it After a few seconds , when he had obviously been thinking about Gilbert he turned and walked back onto his office leaving me to put my top back on again , I trundled after him in the hope that he may have now after 10 minutes of thinking come up with what Gilbert is and what he's doing sitting on my arm ...............but he hadn't 'I'm going to have your arm scanned , I'm hoping that I can get you in within the next 10 days for this as the 'thing' ( poor Gilbert being called a thing and by such a nice little man at that ) will show me exactly what it is , its NOT like the last lot you've had as they can be moved up, down and around , this thing ( Gilbert definitely twitched then and I wonder he didnt shout out to this little doctor 'here mate who are you calling a thing , speak for yourself , dam cheek' !) is definitely large and seems to be growing in or around your nerves on the forearm ..................er , I could of told him that over the phone or sent a picture and not done a 60 mile round trip , then stood in his consulting rooms for all of 15 minutes before being told exactly what I've know for the last 2 months !!!!!! So, the magical , mystical Gilbert is still here with me , in the next 10 days I will be taking him along ( if he's Ok about it that is and not doing somthing else , like washing his hair , painting his bedroom or cleaning the car ) to be scanned and then I will know once a for all what Gilbert is and how to evict him . So apart from slipping onto even more 'lunacy' over the last 24 hours Gilbert and I are still together and going strong , he's helping me cook dinner tomorrow and some cakes for Sundays tea , otherthan this he's just resting as usual May be while he's still with me I should write a childrens book about the adventures of Glbert ' The magical , mystical lump '.................or may be I just need to rest until the men in white coats come to take me away for a nice holiday in some nice claen white hotel !!!!!!!!!!!!!! Ami and Gilbert XXXXXX

Its 4.30 am here in the UK and I'm up as I'm a bit worried about old Gilbert here , today is the day I see the doc about him and he's not looking any slimmer and the pain is till there when I lay down on him . Well I suppose you wouldnt want to be squished by a woman laying on top of you ( er , well unless it happened to be your wife of course ) Anyhow worrying has had isn't side effects as my balance keeps coming and going , more going than being level in fact and this is something quite strange for me as I seem to want to walk like crab or fall in a sort of side ways running motion to the nearest flat thing to lay on , be it my son at the time who was sitting in his bed talking to be at the time .............the look on his face was one of shock and sheer disbelief as mum here started to wobble then lean to the left followed by a few side steps and a 'splat' onto his bed or my husband who was drinking a cup of coffee at the time and didn't know whether to catch me or catch the coffee ( he choose the coffee and me ) as it was I ended up worth coffee all over me , the settee and the floor , but the good news is that the mug wasn't broken So, later this evening I will if I'm still sane and standing upright let you know what the doc thinks of young Gilbert here and what he is going to do about him , just hope that he doesn't decide to do a needle biopsy on me .............yuck not something I'm looking forward to having as the last one was somewhat of a hot cold hot cold and then hit the floor affair . Ami and Gilbert of to see the lump man in a few hours .............xxxxxx

What social life ????? From going out to functions such a parties and balls and charity events I now do nothing at all , I call people and email them and write on a few sites such as this and another but as for seeing people ..............er NOPE. I suppose I'm lucky as on very very good days ( which are now getting very few and far between ) I can go shopping with my son or husband into town , which in all is the highlight of my month for me , I've even had to at the minute give up doing any charity work at all be it via phone, letter and especially in person as I cannot control my sweats , head pains , loss of vision and now my balance has started to go , well never mind I'd make a great 'extra' on a hospital movie or a TV show as a patient in a movie would I ????? See , you can always find something positive out of jolly old pots . .............Ami XXXXXXX P.S. one thing I have found is that if I want to go shopping with hubby to sleep in the car on the way to the place , on arrival the first thing I then do is get a cup of coffee to wake myself up and something with sugar in to keep me going as I shop , once back in the car I always fall asleep on the way home again , but at least I've been out and about and I feel I've done something . So make sure when you go out you have one of those blow up head supports with you or a V pillow for your head and a fluffy blanket and snooze away until its time to shop .................. also check as most UK shopping malls offer free electric scooters to run around the place in now , after all they want you to shop with them as money is money who's ever it is , these have to be pre-booked a day or so before hand , yes, I know its hard to pre-book as we never know how we are going to be , but its worth a try isn't it . This works for me and I can scoot into every shop in and around Plymouth in Devon and not feel like I'm going to 'keel over ' all the times as I'm sitting pretty , so may be if you have someone who is willing to drive you say every fortnight to a shopping mall and bring you home again , staying with you to shop and carry the stuff back to the car along with you if they have to !!!

I had my flu jab about three days ago and boy has my body decided this year it doesn't want it or like it I've never had a problem with a flu jab before , but this time my arm has swollen up with huge bright red patch the size of a large orange where the injection site is , its red hot , stiff and so painful along with so itchy , it makes me want to scratch myself silly , which of course I wont do or this may lead to other problems. What with the tumour ( which I've renamed Gilbert ) on my left shoulder/top of arm causeing me pain if I lay on this side and now my flu jab causeing pain on the other side , well so much for sleep at this time . Would I have it again next year ?????? Probably yes , as I've had a very bad bout of flu before and its NOT fun at all setting of nearly all of my Pots issues and making me wish I hadn't been born I've also had with pneumonia a couple of times , numerous chest infections, pleurisy , bronchitis and a shadow on my lung and know all to well how easily flu can lead on to other more specific illnesses, so next year I'll be there arm ready for it again , but hopefully it will behave itself .................or should I say my body will behave itself .................HA, some hope Willows.

Hello all , my banana lump and I are still here and growing well , unfortunately . well I'm off to see the lump man this week at long last , but the trouble is I've now had my flue jab done on the other arm at the top so if the doctor wants to compare both the rams he cant becuase for some strange reason this year I've decided to react to the flue jab outstandingly OMG , I had it in the top of my right arm and boy do I know it , now the size of a flat orange and bright red the heat it gives off would keep me warm for many a night if I had to sleep outside ! and tender , mmmmmmmm somewhat of an understatement I've never had this happen before and its not just annoying but very sore and making my ability to sleep at night go totally out the window I cannot sleep on my front because I cannot breath at all ...................... I cannot sleep on my back because if I lay on it for more than 30 minutes I get kidney and back pain and I'm so stiff with pain all over I dont know what to do with myself when I wake up , which is every 20 minutes or so when this happens and by morning if in desperation I've knocked myself out with a combination of painkillers and sleepers, well I'm in such a state it takes me around 45 minutes to be able to walk to the bathroom and then the rest of two days to get myself back to any normality , whatever that is !!!!........................... I cannot lay on the arm the lump is on as it is so painful and it makes my shoulder / arm and hand go dead and heavy and then I start to get other POTS issues kick in .................. Now I cannot lay on my flue jab arm as its so sore, so hot and so swollen ........................... I suppose I could try hanging from the ceiling by my ears or standing upside down in the wardrobe balanced on my head , just for a change or even sitting astride a dinning room chair with each arm supported by slings ( hung from the ceiling ) and my head supported by a large tin of baked beans which is sitting on our table , this may cause my legs to go dead but what the heck a girls gotta get some sleep somehow hasn't she Hence why I'm up at 2:30 typing on here again ..................oh, how I love my body and its little ways of letting me know I'm still alive and still going strong , isn't it a pity that no one has invented a way of talking to yourself and getting an answer back yet ...............ah , sorry they have its called a husband Willows, crazy as a bag of frogs with two sore arms now ............. P.S. I've decided to call my lump 'Gilbert ' now as when I went to see my local doctor and referred to it as a banana and I think he thought I'd lost the plot , Gilbert sounds more 'normal' .........well for me it does .

Thank you all so very much for your replies especially Sandra , who if she doesn't mind I will take a copy of and let Mikes POTS doctor have a read of. Mike has been up and down this past week or so , he had one day when he was quite unwell caused by loud music to begin with . He was in a group of students in a large hall at college and they had very loud music playing whilst sitting in a ring on the floor , Mike suddenly felt very dizzy , sick and lightheaded , it must have been something visible as his tutor came over and asked if he was OK , realising he wasn't Mike was taken out of the room and lead to the shop to get a drink and sit quietly for sometime , 10 mins later his tutor came back to see if he was a bit better , which he wasn't , so Mike spent the rest of the lesson sitting in the college's reception drinking a glucose drink. Having collected him about 4 hours later ( he didnt want to come home but wanted to carry on working at college) he said he felt fine and that we should call in to the local supermarket and get the few things we needed before returning to our village, bad move ................ I went to pick up a prescription at the chemist part of the store and left Mike to cash up our groceries, meeting him just as he was about to leave the store I took one look at him and could see he was once again unwell . He was as white as a sheet and slightly staggering whilst trying to push a trolley , so mum here had to grab him and lead him to the car , once sitting down I got him to take a half bottle of glucose with some salts added and rest his eyes for about 15 mins or so , at least his colour returned but he was still lightheaded and shakey . Mark and I had to drag him up the steps of our house , which is not an easy task between us , and then get him onto his bed to rest . He's due back at the POTS man soon as I can make an appointment , so hopefully he will be able to sort something out for him as this is not a good time for Mike and I know he's very worried about it interfering with his studying . So, today mum here helped him write a report on the armed services !!!!! mmmmmmmmm, just what I needed to do on a Sunday afternoon . I'll let you know more soon , and as for heart rates blood pressures etc , I have no idea at all as the machinery was facing away from me so I couldnt get a look at it and the doctors didnt really want to say anything at the time ( like they do ) so I'm in the dark as to if his heart did stop or not , all I know is that when Mike suddenly went 'off' the machinery started to sound off as well and the poor doctors /nurses where frantic trying to lay Mike down and get him help , it wasn't until this was done and Mike was a bit more stable that the female doctor said they thought Mikes heart had stopped for a few seconds and then restarted again , why this didnt register on the machines he was attached to I dont know . Anyway , hopefully the monitor he's had on may show some more ideas when read . Willows.

I have a hole in the back of my heart somewhere , mitral and aortic leaks and am bradycardiac beating at just 50 beats or less in normal day to day conditions. I then drop to under 40 at rest or when asleep . When I do get some sleep I sometimes 'bottom out ' which means I get angina attacks when asleep and on many an occasion my husband has had to 'poke me ' to get me to wake up as I dont appear to be breathing a lot and my pulse is in the 30 's. I've also had heart failure . But I'm still here ............ AMI xxxxxxx

Mike had his TTT and things have now moved on somewhat , poor boy Having strapped him down and tipped him back for 10-15 mins flat they then brought him upright to almost standing straight , we waited and waited and nothing much happened so the consultant asked if he was having a good day or not , well Mike and said both said yes at the same time. So the consultant said she would give mike a spray under his tongue to make his blood pressure drop a bit . And this is when it all went horrible. At first Mike just said 'I feel strange' ............then his voice went strange and he shouted out I'm going to be sick and then alarm bells went off on the machinery and the consultant and her two helpers where trying to get the bed back down , give Mike a bowl to sick in and get his legs in the air .......all at the same time . Mike had now blacked out and was hanging from the table that was attached to the bed as it was still upright , they got the bed down and his legs up but Mike was still out cold and drenched with sweat , grey and looking just awful . It took them around 25 minutes to get Mike back and quite honestly the consultant was getting very worried , but as I said this is just what we want you to see ! When Mike did wake up he was disorientated again and his speech was slightly slurred , he had a sip of water and they then managed to get him to sit more upright and his colour eventually started to come back about 45 mins after he blacked out . Well the outcome of this is that Mike son a heart monitor again for between 2 to 4 weeks becuase guess what ???? They actually think that Mikes heart is stopping and then staring again The consultant tried to get mike to OTT again by taking blood but he was just so still out of it he didn't really know what was going on , but next week he has his flu jab That day will be very interesting for us all as it is going to be given by a doctor with another doctor in the room and nurses and they will be ready in case his heart goes silly again , ready OMG talk about talking precusions !!!! Mikes not very happy about all this , but at least he's getting somewhere with his consultant , she was really good and almost mothered him when he was unconscious, but the best thing to come out of this is that IF Mikes heart is stop and starting again they will give him a pace maker ..............which means they will also look at mine again and the likelihood is that I will get one to .............OMG I dont think I will know how to feel if I actually get a heartbeat that is over 50 beats a minute !!!! I'll keep you informed of any other events as they happen , but what a day at the hospital !!! Ami and Mike

Hello again all. I've just had what I can only describe as a 36 hour session of unwanted horizontal unconsciousness. That little tablet my doctor decided to give me , which I took just one of on Saturday night at about 8 pm had me laid out cold. He did say that it may have a slight .............er......... slight ............sedative side to it . Now there's slightly sedative and there's outright unconciouse! and neither Mike or Mark could wake me and I slept from 8 pm on Saturday night until 10 pm on Sunday evening followed by 30 minutes of me half awake and half asleep wobbling around trying to go to the loo and drink OJ before off I went again sleeping from 10:30 pm Sunday evening until 9 am on Monday morning thats no drink , food or going to the loo for 26 hours ! Me thinks that in a hurry to make up for his 'forgetting my banana' my doctor somehow forgot a drug or two and this new one reacted with one of the ones he forgot , because I can tell you in all my years of trying to get to sleep with sleeping tablets , and muscle relaxers and what ever else the docs have given me ...nothing ......and I repeat not a thing has ever effected me like this new drugs . OMG out cold was an understatement Mark said it was as if someone had nipped into the house and anethatised me! Anyhow I'm back up and about again . Mikes having his TTT done on Wednesday and I'm looking around like mad to find times, dates and prices for a trip ?????? All being well and me being able to toddle along like I do , Mark , Mike and I are going to visit Corina a week before christmas , we may even have another member to add to our party as Mike has at long last found a nice young lady . So it should be a very merry party who trundle over to you Corina , I am so looking forward to seeing you all again . I haven't had a photo done of my new hair cut yet , but it does take a bit of getting used to , 2 foot off in one go is quite a lenght , but what the heck 'no more being strangled at night' by my own hair and its quicker and easily to handle now . I'm now going to write my Christmas list and design my christmas cake top , I'm still talking to my banana every day , but alas as yet have not seen a monkey who will take it away for good .............look after yourselves and keep biting those ankles. Ami and her motley crew xxxxxxxxxxx

Thanks for all your replies. Yestrday I recieved a letter from the doctor who forgot my appointment and it read ................. Dear........ ................ I am writing to offer very humble apologies for the delay in referral for your left arm . He then goes on to say that he honestly thought that before he left for his two weeks holiday he thought he had referred me and was hiorrified to discover on his return to find he had not , and was taking full repsonsibility for this and quite honeslty couldnt understand why this had happened. Along with his letter was couple of other sheets and a telephone number , which when I called I made an appointment with a Torbay doctor. I'm to go over in a couple of weeks time to see someone , this is the earliest time I can get in as in the area it appears we have a number of people trying to be seem by Torbay instead of Derriford. Old 'banana boy' has been feeding well and the lump has now grown somwhat , it was sitting in the middle of my arm running slightly down wards to the innner side a couple a weeks ago , but having looking at it last night Hubby has now discovered that it goes across the arm almost from inner arm to outside arm and is about 3-4 inches wide , almost life a straight line with a huge dip in it . I've had my painkillers increased again and also been put on another drug as I'm now beinging to feel pretty low. This low feeling is somthing that I havent suffered from for around 20 + years , but once having been in that deep dark place of dispare its not a place I want to go to again , so I've asked for help . Never mind, soon have somthimg sorted and be back to normal again . Ami .

I had a hysterectomy after I had Mike because of things falling out at very strange times , like shopping in Tescos' for a chicken times that is I tell you , I've never looked back as far as this is concerned. They left one of my ovaries but I did have an early menopause , with hardly any problems at all , I do take a low rate HRT pill each day and have been doing so for around 5 years now but other than this I'm fine . Unlike most of the other patents in the ward I was on who had hysterectomies , the other ladies cried at the loss of thier ability to have children and had to have counselling , I was over the moon and asked if I could have my hair done instead !!! which of course they looked at as somewhat strange , becuase I should have felt sad , not happy after having the operation . Ami

Hi all, Sorry I haven't been around much but I've been unwell for a few weeks now on and off , just when I think I'm out of the bad spell , back it comes again. I am trying to keep in contact with some of you guys via private emails , but I thought I'd let you know whats been happening . I was sitting in bed watching TV late one night and thought I'd better put on some of my speacil cream I have for my skin , so I started to rub it in well, first on my right arm and hand then started on my left arm ...............OMG! For the past 4-5 months I've been having a lot of pain in my left arm , from the shoulder joint down my arm to my fingers with pain , tingling and almost burning electric shock type shooting pains at times, which I put down to my heart conditions playing up. As I ran the cream over the top of my left arm slightly towards the inside I found a huge lump ............around the size of an average tea cup . Dont ask me how I haven't felt it before or why I happened seen it because I dont know and even Mike and Mark couldnt believe what they where seeing when in total panic and pain having rubbed the thing hard I screamed out !!! Mike was the first in to me and he stood open mouthed as I said 'look at this' behind him was Mark who came over and sitting on th bed ran his hand over the area. 'OMG Ami, its a huge lump ' he said going pale . When he tried to move it under the skin like he had moved all the other ones , but all that happened was I wanted to be sick as the pain washed over me and I found out why the next day . On seeing my own GP on an emergency appointment that morning he informed me after having a good look at it that the tumor was growing into my radial nerve , muscle and was not at all like the rest , this was something more serious. This was why I have been getting so much pain with it unlike all the rest which didnt hurt one little bit . It is the biggest one I've had so far. My doc said ...............that he would call the hospital that day to make an appointment with a specialist to get me seen ASAP , unfortunately he forgot to . Last Friday as the pain in my arm had increased so I went back to see my other local GP who couldnt find any information about the first doctor contacting the specialist , she was unhappy about this , but then the two doctors who look after me have a vast number of other patients to see to as well and they are only human and we all make mistakes . I'm now on even more pain killers because at time the whole arm is burning with pain and the tumour is definitely growing ...........fast , so I've called it 'banana' as its about as long as one now and twice as wide . So what with this and trying so sort out the stupid people at Mikes college who it seems just want me to take them to court for disabled discrimination and Mark who keeps falling down everywhere , well lifes a bit hard for me at the minute . I do come on and read all your posts , but pain keeps me from writing much as its very hard to write with jut one finger of my right hand , even my book is suffering from lack of work and my fourth painting ( Corina's birthday painting ) is just 3/4 finished . Anyhow as I said to Mark . ' If I loose the arm , becuase it turns out to be that one thing we dont want , well at least I'll still have one to use and between us we will have a whole pair of hands , a case of you hold it , I'll hit it ' Mind you not to sue about the getting dressed thing , like putting on bras etc , mark is NOT the best at buttons , bows or hooks and eyes , but life would definitely be even more interesting for us all . So as it stands I'm off to see a consultant as soon as they can find a space , I'm not going local , my reason ? I'd rather have a vet treat me than a hospital who dont have the foggiest understanding of POTS and think its all in my head. You never know, they might even think I've stuffed some loo roll in my arm to produce a lump ( like stuffing your bra when a kid) thats the sort of mentality I have to deal with a Derriford , so I'm going to Torbay hospital soon . I'll keep you up to date with my Banana lump . Keep smiling and dont let the world go by without biting its ankles............like I do AMi.

Sara, I can well understand your anger over this ,disabled discrimination in the Uk is awful even at the one place you would think that it couldnt possibly be , take my sons college. My son Mike who has been awarded his blue parking badge ( UK) is NOT ALLOWED to park in his own colleges blue badge parking bays and have a guess why ? Well here ,take your pick because each time I tell them what they have said is unlawful they come back with another reason ............they are all outrageous and unlawful and are making the college look like the are discrimination towards Mike. By the way there are 3 bays and also a larger dropping off bay for small vans/ coaches for the disabled. reasons number 1 to 5 so far : 1: Other disabled people who a have a worse condition then Mike need to park in the bays . My answer was: How dare you pass a medical assessment on my sons condition when you have no idea what it is or what it does to him , who gave the college's parking attendant a medical degree ? 2: If Mike parks his scooter in a bay all scooter riders will park in them. My Answer was : That's your problem , not Mikes, put up a large sign saying that the bays are for disabled car and bike riders only if your worried. 3: The bays are only for disabled visitors to use. My Answer was: I suggest you check your own disability statement on your college site as you clearly state that you have disabled parking bays for your disabled students to use whilst at college. Also if these are only for visitors why do other disabled students use them and why have a visitors car park 5 meters away ! 4: The disabled bays are not for long term use and as Mike is a full time student this is not allowed. My Answer was : NO council owned disabled car park ( which this is ) has a time limit and in any case Mike is not at college from 9 to 5 five days a week. He is at college is 5 hours a day , some days less and only four days a week . 5:We have decided to give Mike a parking place just away from the disabled bays , but if any damage is done its not our fault. My answer to this was : Telling my son to park his brand new bike next to the huge college rubbish bins and recycling bins when you know that the chances of getting damage from items put in to them or when the rubbish is removed from them is around 90% and then telling him that if damage is done 'its nothing to do with us' is not acceptable. By refusing my son the right to park outside of the college in a designated blue badge bay when he is the lawful holder of a blue badge is unlawful and unjust and I will be seeking legal council. I am now in talks with the disabled law centre in Devon and hope to bring this college to its knees over this and at least 5 other problems they seem to think they can get away with because Mike is not able to fight for his rights on his own . I expected more of a place of learning after all these people are supposed to be of higher intelligence and so have a better understanding of the needs of the disabled ..............not less. As a disabled mum with a disabled son I will not let this college walk over my son and make him suffer because they think they know best , best for whom , its obvious not my son but the selfish people who do nothing to assist my son when they know they should . Sara, you challenge them by saying who gave the college or who ever it was a medical degree and why has the college listened to a student or member of staff who knows nothing of your medical condition or abilities to walk , ask them if they are claiming that you are in possession of a disabled parking badge unlawfully becuase of they are suggesting this then they will obviously be willing to make this statement in court .If this doesn't make them back off then they are fools and deserve to be legally taken down a peg or to , best of luck . Ami .

This afternoon I called the Uk's Blue badge parking people and spoke to them about Mike my son , after sometime explaining about POTS and how it affects him and how he is trying his hardest to 'fit in' and 'be normal' at college , well he's had to give in as pain is just raising its nasty little head and bringing him down. He came home at 4:00pm very upset today, he say trying to talk to me hiding his his bottom lip from quivering , he tried to explain that he feels an outsider in the group of the 17 young people who are on his 3rd year course at college. One of the reasons may be that the head of this course has made cruel and unjustified remarks about Mike in public calling him .....wait for this one .......FAT !!!! FAT ...............er excuse me Mike is over 6 foot tall and is well within his normal range , how dare a so called head tutor call my son names in public, what is wrong with him ? Want to read something really shocking ??? this head of course is believe it or not a magistrate in the UK .......yes a man who sits and passes judgement on criminals , he's also the head of this 3rd year course and quite honestly you would have thought a man of his standing in the community and at the college would have known better................Mr B M****** you are a disgrace and you should be ashamed of yourself. To say such things to a lad who is unwell and struggling ever day with this awful condition is just tottally and utterly appalling and I'm ashamed that the college would let such a man be in charge of young vulnerable people . My son has worked hard to get into this 3rd year course , he has battled on when he's been unsteady on his feet , had blood pooling , sweats, dizziness and such pain in his legs he's not know what to do with them , yet instead of giving encouragement ...........he's put down. Shame on the college for allowing such a thing to a disabled lad of not even 18 years old who for no reason of his own has been dealt this horrible hand . And to add to the insult , guess what ????? Having been given a blue parking badge he's now been told that he cannot park in the designated disabled bays because ............other people may want to park in them , who could be are worse off them him ..............excuse me ???? Who gave the college an instant diagnosis kit, who gave the college the right to say that a lad with leg and heart conditions ( Pots) is any less affected than a girl with the same or a man with crutches or even worse someone who is conning the parking people into getting a free badge! A disabled bay is for blue badge holders ..........all blue badge holders, not just the ones they think deserve to use the facility's...........angry , angry tomorrow I go armed to see my sons college and this Mr B M and if you do not hear from me for a few days its probably because I've stressed myself out so much I've taken into hospital ......................I will not have my son discriminated against . Willows.

I live in a pool of water all night and have done so for over 10 years now , but mine doesn't stop there and I get the sweats 24/7 all day and night ..........lucky old me Food is just something I don't enjoy anymore as the sight , smell and even noise of food makes me sweat and you try eating when its running off your face like someones pointed a hose at it and said 'let her have it guys' not nice at all , in the end I've just given up and eat hardly anything that's on my plate now .........except ice-cream or ice lollies! I'm up now ( its 4:15 am in the UK) because I started to sweat and I just get hotter and hotter when this happens and cannot get back to any normal sort of sleep again , not that I've had normal sleep for over 15 years on and off. UnfortunatelyI do have horrible pain in my legs, hips and lower back as well ever night with it , but the main thing is the sweats , I just cannot sleep like this and so I sleep when I can day time . I really hate having this awful condition and just wish someone somewhere would find help for all of us who already have it and for those who may get it later on in there lives . Ami

This is a very interesting post indeed and something I've just started thinking about myself ......today in fact I've just ordered from an American shopping from TV site a book+DVD+ band so that I may try to do some ' Pilate's' as my walking is becoming very much a problem at this time , I'm also a lot more short breathed going upstairs than a few months ago and over all I feel ...........blah really 'out of sorts' 100% of the time ,always wanting to lay down , always very slightly head achy + joint achy and just yucky ............if that makes sense? So I thought I'd get myself some very gentle exercising , which if I get pain with at all I'd stop doing for that day then come back and try the next day, as well as starting my wonderful 'fruit & veggie diet ' again which , do you know when I was on 'full time' I felt absolutley wonderful 'inside' my skin was like a peach and my hair grew to silly lengths and shone like someone had been polishing it so tyo me it makes sense to grit my teeth and start to do some exercising + eating my special diet ( that I know works ) and just trying to be a bit more 'positive' which unfortunately I've not been over the past few months or so ............and it shows. In my youth I to was wheelchair restricted with such walking problems with pain , balance and general inability to stay upright for any lenght of time because of sheer fatigue. But later in my 20's I became super fit .............and I do mean super I'm talking about 2 hours everyday of either dance training , weights or keep fit ....every day and every other day karate training ( up to 1st Dan =black belt) and also at least 5-6 miles of walking It wasn't until I became pregnant with Mike that everything went very fast down hill , and no I dont ever think of what it would be like if I hadn't had him or blame him for the condition I'm in now as I've had POTS 90% of my adult life, but in different stages and at one point over a period of around 7 years it was almost as if it had gone onto hibernation which was utterly brilliant !!!!!!

Thanks for all your replies guys, its so very nice to read all your comments and your help on this . Today we go back to the hospital to give over Mikes heart monitor and may be have a wander around the town as its right by the sea. Mike got his TTT test date , its on the 8th October which isn't to long away . I'm now asking to be sent to this doctor in Torbay as I feel he is really trying to sort mikes probelms out and get a diagnosis , which as you know is half the battle won , so hopefully he may be able to help me with some of my meds etc. Thanks again all Willows.

Dear Corina , Happy Birthday to such a lovely person and I'm so pleased you were able to enjoy your birthday in such a wonderful place .I'll be in contact via post soon . Lots of love Ami