willows

Hello guys again , well I'm still standing upright ....just I had to go and see my physio as the pain in my hips got extremely bad again , so what did she find ???? yep my left leg this time had shortened by about 1 1/2 inches , so once again I had to have it moved back into place by the poor girl pulling and pulling on it . I'm now going back to her in two weesk to check it and see if both are level again. My right hand is still playing up , this Tuesday I'm off to the local doctors ( my brilliant one ) to have steroid injections into the base of it , something I am not looking forward to as the last lot I had into my left shoulder were excruciating and I passed out cold on the floor , I might add it was about 15 years ago I had this done and not by this doctor , so I'm hoping things have improved by now . Tomorrow I'm taking a folding chair and umbrella and going to The Hoe on Plymouth's sea front to cheer on the 1/2 mile marathon , the company who are running this are the same company I'm in contact with about sponsoring me for a port-a -cabin for the big bus pull on the hoe in July . I've now gone all 'Techno' being a great music lover ( well classical , movie theme's and some modern stuff ) I've now taken over my son's old iPod .................mmmmmmm, when I say 'old' thats rather a laugh as its just 7 months and hasn't had its 1st birthday yet but Mike has so much music to listen to I upgraded his 1MB to a 8 MB .............shhhhhh, dont tell him it was because I really fancied his old one because it SEEMS to be easy to work .............says she who still hasn't mastered how to write a message on her mobile or call anyone other than Hubby or son crumbs the things so technical and without my glasses I'm lost , so we'll wait and see how I get on with the new music machine . Having grown up with an 8 mm reel to reel ( that shows my age rather ) all this new fangled Ipod stuff and now those tiny little things the size of a cocktail sausage , well its beyond me at times. Still things are still going well here for the 'speacil event ' not long now is it I've managed to find a suitable outfit in case its cold , its a velvet trouser + matching sleeveless round necked top and long jacket in a wonderful deep purple colour and so soft this with my steadfast ankle boots ( I do have a tendency to fall over rather ) and one of my birds on my shoulder ( may be 'sparks' my Phoenix but possible the new one I'm making who's all royal blue, bright yellow, emerald green and shocking pink ) well that will cause a stir , after all I'm known for my lunacy and for making the children laugh , so with this in mind and given the fact that there will be a number of sick children with us ...............I just cannot resist making a fool of myself and seeing them laugh at me , its what make me who I am , crazy ...........completely silly ..........rather a lunatic ...............but , if I can bring a smile to the face of a sick child and make them happy and forget the pain they have for just a while , thats all that matters to me , thats what I do best . Well if I'm going to be off tomorrow morning looking not like something the cats dragged in ( old English saying ) I;d better get myself back to bed and sellotape my eyes closed as its now 2 am in the morning here . Bye for now , look after yourselves and I'll write soon with more of what I'm up to are not ..................Love AMI XXXXX

I'm back from the doctors again , mmmmm well life is going to be fun for the next few months or so I've torn the muscle and possibly nerves at the base of my thumb , which is why I keep getting this awful pain when I use the thumb for anything other than just bending it at the joint , once that has worn off it leaves a constant aching pain , until I move the thumb again ............and off we go like a merry-go-round all 24 /7 . Tell me have you ever tried opening a bottle without using your right thumb or moving the thumb from tip to base at all ? Or try one of the following ; Cut something with a knife , doing up a button , opening and closing a door ( when you have to lock it by pushing the handle up sharply and firmly) carrying a medium weighted bag , washing your hair , drying yourself .............I've discovered just how much you do use this digit and I never knew before I had this happen what a problem it would be trying not to use it So , I had a number of choices . 1; have the hand/wrist put into plaster .........not a good idea as given the fact I now have only 50% use of my left hand doing just simple everyday things would be a real struggle for me . 2; Having it really well strapped + steroid injections into the base of the thumb in a couple of weeks time . 3; Going to see a surgeon for a repair job on it , then having it put into plaster . So I went for the really well strapped + steroids later in the month , mmmmmmm, big problem as my doctor discovered having said it ! What I need is to have the hand immobilized from the first joint on my thumb ( nearest the nail bed) to about 3-4 inches below my wrist , this leaves my 4 fingers able to do things , although limited I am capable of typing ( yep ,I'm typing this ) and doing a few other things. SO first we tried the big heavy strapping bandage , but all this did was to force my thumb down almost under my hand , OMG pain , pain, pain, right up my arm again ( Oh, that rhymes ) . Next we tried the hospital support with the metal strip in it and the big heavy bandage on top ,which did exactly the same again, well a doctors got to learn as well you know . So then I came up with the idea of something solid but flat in the shape of my 1/2 hand + part wrist that I could be strapped to ..........but what ????? Looking around the doctors surgery there wasn't much that could be used and he , poor chap hadn't done this before , its always been plastered . SO I came home still with my big bandage on , which was making me feel sick by then and a determination to find something, come on guys I'm the arts & crafts person around here and as doc said , if I or Mark couldnt come up with something that would fit the bill 100% then something must be happening to our brains as we have sorted most of our own stuff like this for years ( Mark built his own walking stick + amputee cuff and I've done the bed side + pully ) So home it was and so I sat and looked around the room ...........lounge ........no.........dinning room ............no .........conservatory ..........no .........all bedrooms + bathroom .........nothing ..........OK this calls for the old arts & crafts box to come out ( its huge ) and me to have a jolly good think ! Well as soon as I opened it , there it was .................what ? well believe it or not the end to 8-9 weeks of solid pain once it had been cut to size , slipped into some of that tubigrip to cover it and then with my hand/thumb /wrist flat on it wrapped with the big heavy bandage .............OMG instant heaven , no more pain , no more knocking against things and almost passing out or catching it on taps , door handles, in my hair ............absolute heaven . So what is this wonderful item ???????? A small 6 inch X 8 inch 1/2 inch thick white plastic ' CHOPPING BOARD' we traced around my flat hand , hubby cut it with a saw and filed the edges round , into a tubigrip .hand flat on it ( exact size so no bits stick out ) bandage on ...........hey -presto. I've just sent my doctor an email to tell him what we did , so now you know , if you have to rest your hand /wrist at all and need to keep it flat , go to a local kitchen store and buy up a mini chopping board . It can be washed and tried ( even dishwasher ) and is very comfortable indeed ! So if you see this strange dark haired woman wandering around you town or village with a large wrapped right hand , and your in need of a sandwich at all , I'll just roll down my bandage and you can cut your bread and slice your ham on my hand well it makes a talking point doesn't it ...................willows , just call me flipper from now onwards , OMG no pain in the thumb and hand is just so dam wonderful .................

Thanks for all your kind words guys, I'm feeling rather like a sticky warm wet dishcloth that needs to be wrung out at this time ..............in other words really yucky I'm still trying to get the sponsorship for the 3 main things I need , but its early days yet for a reply from them so its still a case of 'wait and see' This is causeing me so many problems as I'm shattered all the time , I had to get up at 1 am last night after having just a hours sleep , did a bit of pottering about and emailing , then BANG ...............I could hardly get myself up the stairs I was so tired and kept bumping into things and falling about . Woke up at 7 am and then promptly feel asleep again until 10 am with my tablets still in my hand . I've now been up 2 whole hours and I'm sweating like I've run a marathon , haven't cleaned my teeth , showered or dressed as I just dont have the energy to at this time ..............just want to go back to bed and sleep again , I am just so tired . Mark has just gone to visit a friend of ours who suffered a NBD after her husband died quite suddenly, he will be back in about 30 mins so can take over anything else that needs doing in the house . Mike is sitting his first exam today , poor lad its the subject he really doesn't like but needs at least a C level in it to get back into 6th form at college , so fingers crossed that its a breeze for him. Tomorrow I go and see my local Doc to find out just what they are going to do with my right hand , many years ago I had my left hand tested for the amount of grip I had after 2 car crashes and various falls had left it rather 'fragile' they discovered I only had 60% of a normal grip for someone my age and I know that its got worse since then . So now with the right hand going 'bye-byes' OMG its going to be real fun soon as Mark and I will not have a good hand between us both ........never mind the 'you hold it , I'll hit it ' it will be more of a case of ' are you teeth strong enough dear ' Well I will post pictures once I've been to the event for you all to have a look at , I'm going to wear a peach coloured suit made by Gina Bacconi the jacket is fitted with peach peal buttons down the front and matching heavy embroidery on the cuffs and collar area's with a mid leg chiffon skirt that flutters in the breeze. I'm adding a cream very small heeled sandal + matching bag and a largish cream chiffon brimmed hat to finish it off ..................well that is if I can find a hat I like soon . Bye for now all , must have a drink of juice and another sleep before I fall of the chair I'm sitting on love to all AMI XXXXXXXXXX

Just a quick word before I go back to bed as its 5 am in the morning here! I have been choking for about 2-3 years now on and off . My doctor thinks its Pots related becuase it only really happens when I get a very bad day , its really horrible and I have to eat so slowly in order to avoid getting food or drink stuck in my throat , it actually feels at times like my throat is being squeezed shut by something , most odd , and I'm not one to get panic attacks or any kind or have a fear of anything ( except spiders ) When this happens I choke and start to go bright red in the face , hubby's getting used to having to bend me over and pat my back to get food out again and its terribly embarrassing if you do it when your out or in company . Having had Pots for so long now it appears to me that the longer you have it the more little things you pick up like this or losing your voice or pains in the face etc ................my what a wonderful life we all lead . Willows ................keep smiling , it makes people wonder what your up to

Hello all , I am still alive and about , but have over the past weeks been in and out of bed like socks in the washing machine because I keep over doing it and getting so excited . As you may or may not remember , part of my everyday life has been given to doing work for a children's hospices in the UK. Over the past 7 years I have turned what was a few simple home made Halloween items on my front door step with about 15-20 coming to see me into a stage show with a full road crew , stage manager , set up crew and back stage actors with in excess of 300-400 children and parents participating in the events . Well this year I have been asked to attend the huge event on Plymouth's Hoe with in excess of 10,000 people attending , put on a 2 months static show at a museum , do my normal October event and possibly take the show to the hospice itself. Next year I am to attend all the South Wests local events ( country shows + large none profit events) as well as any other one off individual shows asked for by the public. The show is also to have newspaper , glossy magazine and TV coverage within whats left of the year , and because the show is getting bigger and bigger as we speak I am now seeking 3 major sponsors to assist me in carrying on my fundraising efforts for the children. One sponsor is for a portable housing unit ( this is transported via back loader to each event with all my props already set up within and so I can just open up as soon as I get there) The second sponsor is for a large van ( in order to transport items /props to smaller events or local ones which are on stage ). The third is for a full time sponsor for all the free sweets I give away at every show ( I have estimated I need about 300-400lbs of loose sweets per year ) . Each sponsor would get full advertising and marketing over the show and would be able to place certain advertising banners etc at the show site and have full recognition on all written event literature ..........which in itself given that the hospice is a very big one is worth a lot to any company . So at this time I'm really working hard as its only 8 weeks until the first event , so right hand strapped down as my thumb/hand /wrist is not good I'm working like a lunatic to get all I need . I already have sponsorship with ; a major international car company , an optician's, a photographer , a trimmings + feather company . As well as help with costs for all other items ranging from discounts to free items given to me , and as well as this I am also in talks with an American company to produce props for stage , screen and events for a very special item from a Harry Potter movie which I hope can be brought here to the UK for the next show , this will be the only one of its kind in the UK and if I can pull this one off it will be a real achievement for me . So what with the designing , production and maintenance of all the props , backdrops , items given, advertising of the event and teaching all the crew their jobs and acting parts , as well as the sponsorship I am having to obtain myself I am now about to be honoured for all the blood , sweat and tears I have shed over the past few years for my work . This has come so completely out of the blue and is totally unexpected , I work for the sheer enjoyment of bringing a smile to the faces of sick children and helping to raise the money needed to help make their lives less painful . So being asked to attend the hospice to be presented to members of our Royal family for me is an honour that I will always remember . I cannot say , who it is , when it is or why its taking place because of security , but I am taking my son Mike with me to be presented also and may be one of my owls to sit on my shoulder , after all I'm known for my crazy antics and even crazier ideas. When all this has happened I will of course post photographs of the event in my photo section via a link . So now its a case of 'what shall I wear' again.................mmmm let you all know later . Bye for now Willows ( very tired , very sore , yet a very happy person indeed )

Hello guys, Sorry I haven't been back on for a while but I'm a little strapped up at the minute , again. I had my hand strapped up a couple of weeks ago for about a week and thought it was al healed and sorted , wrong . I went to turn the key on to start the car and bang, the muscle came away at the base of the thumb on my right hand . OMG the pain , it was a good job Mike was in the car with me as I wanted to be sick ................ So now I've got my thumb strapped down to my hand and just a couple of fingers sticking out of the top , flipper comes to mind. I'm still looking for ideas at the minute for the play by looking in all my books on fairies and some William Shakespeare books I have , but with the one hand looking like a dolphins arm me thinks I will need a bit of help for the larger items. I've just finished ( Saturday night ) Sparks the phoenix , I'm hoping to have her adopted by the local firemen , having taken her across the road , sitting on my finger as she has real little claws to hang on with , I almost causing an accident as a car came down the road and the driver was craning his neck to see if she was real ......... Well gobsmacked am I , as OMG this older couple want me to do a 'Mystic Bird of Paradise ' for them to adopt and they are willing to pay twice as much as Sparks for the privilege of adopting her ,if not more , so I'm now looking for emerald green , bright yellow , turquoise and purple feathers on the net and other feathers for even more owls . So far I have 4 large owls and 1 smaller baby owl finished as well as the phoenix, but with just 6 months to go until the show I really cannot just stop and rest , so its a case of a little bit of work here and there , but I'm so pleased with Sparks , and hubby's made her a wooden perch to sit on .............laugh , she looks so cute sitting there looking about her and she's not a small item as shes some 2 + 1/2 feet in total length . She should be on the photos site soon , so I'll post a link when she is . Better go now as its 3 .30 am in the morning and I need a drink , bye for now and thanks for the posts , any ideas for the school's show gratefully received by me . AMI or flipper as she's now called by her family ......

I feel so chuffed at the minute , having had a bad few days again and been 75 % of the day stuck in bed scribbling all my arts and crafts stuff down as I think of it and drawing ideas from films I watch , at last someone has seen my ability to make 'something out of nothing' I've been asked to go and assist with the stage show of 'A mid summer nights dream' at the school we put our Halloween stage show on each year , its a public school and has a great arts and crafts department , OMG how I've stugged at times to make some of the larger items here , using my old ironing board as a table or our dinning room table to build items on , which can be a bit of a bind if you need to eat of it .............a case of eating around the ears of a large black dragons head whilst looking up its nose ........... . So I've said I'd love to , they know all about my condition ( or so they stay ) but I will fill them in giving the lead to this site so they can really read up on its ups, downs and flat cold outs I'm not to sure if its a Christmas production yet , I hope so ,as I do need time to image the stage sets before I can turn my hand to making things , so cool to be asked ( by the deputy head no less) and I'm looking forward to being useful in the community again..............AMi. PS my hubby's as pleased as bits as his late mother went to this very posh school .

I'm giving my owls a rest at the minute , I have another 3 ordered but as they are not wanted or needed until October I have loads and loads of time to do all the other things I have for the show as well , so I'm doing a large highly decorated creepy picture instead at this time for a change. I've been in bed and out again over the past week or so and not feeling anywhere near as good as I have been feeling , pain in the back/legs has been awful so on Friday I'm seeing my doctor again and am asking if I can have my 'legs pulled again' ............no this inst a joke , last time I saw the physiotherapist I had one leg longer than the other by about 2 inches which was why I had so much pain, so may be its happened again. Anyhow my picture frame is made from sheet of hardboard with some old ceiling coveing stuck on all four sides , I then painted the coveing first with pale gold paint and then just as it became ' tacky' I painted over this with a deep bronze colour paint and swirled it in a design all over the four sides, it now looks old and not like cardboard at all ! Next I got my husband to cut to eye holes in the hardboard , wide enough for you to look out of in comfort. The inner hardboard area will now be covered with all the stuff I have on Dragons and any pictures I have , but right smack band in the middle will be a large picture of a dragons head , with its two eye's in line with the eye holes my husband cut earlier . The idea is that I make a special swing cover thats attached to the back of the board which has the dragons eye's stuck to it , so them the swing section is in place from the front it looks like a normal picture , but when the swing section is moved out of the way , you can look from the back of the 'masterpiece' out at anyone and only see their eye's only............ I have spent ages and ages sticking on kids plastic 'jewels' to make the frame look expensive and interesting so that the actually frame is more interesting than the picture , cunning that ! The idea is to hang this when finished on stage in my show , so when the kids come and look at all the interesting stuff I have in the picture .........real eyes suddenly stare back at them , creepy or what ! I'm loving doing it at the minute and in a way I'm able to cope more with this pain than just sitting or laying there letting it take over my body and life, if there's a will there's away and by George I'm not going to let this condition get to me ,even if I'm as tired as a bat doing a ten mile walk on hot coals. Well its hubby's birthday today and we are going out for lunch together to the garden centre ( wonderful food ) and then we can both go and have a look around at all the stuff we are interested in , hubby's being the plants and equipment and mine being clothes and arts and crafts stuff. AMI

My heart goes out to you after reading your post. I'm sorry you are having such a bad time with your friend, but a true friend would , I'm sorry to say understand. I know its her big day and she is probably very excited about this, wanting to share all her enjoyment of this day with you , but honestly and truthfully if after you have carefully told her of your illness and the position you are in and all she can come back to you is this ' Id better think long and hard..............' well I'd think very long and hard about your friendship with her in the future. I have a very good friend who I had not seen for 30 years , we found each other in 2005 and I had to explain to her that I couldnt just drop everything and rush to her , I was ill and not the person she had known all those years before, her reply ..........I waited and waited for 3 days , thinking OMG what have I done she will never want to see or speak to me again now ....................that night a knock came at the door .............it was my best friend , she had dropped everything , begged money of family and friends and travelled through the night to get to me , need I say anymore. A friend is someone who excepts the good or bad about you . A friend is someone who you know when times are bad , just talking to them makes you feel better. A friend is someone who you can tell your inner secrets to and know they stay a secret. And a friend is someone who would go to the ends of the earth if you called her ...........right now. I'm so sorry she had to treat you like this , but sometimes it is very hard for someone to understand an illness .........when they have never seen you ill, its at if it just doesn't register with them. She probably thinks its an excuse for you to use in order not to go to something she has arranged or do something with her , these type of people unless actually see you on your knee's head down the loo shaking like a leaf and begging for their help , will never believe your illness what every you say . Our illness really does tear families and friends apart at times, some people bounce back when they see its real and not 'just all in the head' or an excuse' others don't and never will believe , until its to late. I can only suggest that you once again send an email to your friend , tell her again about your illness , lead her to the POTS site so she can actually read up about it more , tell her that if you could possible get there you would , but with ill health and money probelms , as well as no one knows her or about your illness in Oregon , you would be risking to much to come , after all would she really want to be worrying that one of her bridesmaids was going to keel over , have heart problems and be in need of a paramedic at the alta , I think not . Hope you can sort this out soon, best of luck AMI

Well I think by now you all must realise I do loads of art work to stop 'going round the bend ' ( mad with boredom) At the minute I'm making a large picture frame about 3 feet X 2 feet , I've used some hardboard for the back and some old foam ceiling covering to make the edges. I have then painted the frame with pale gold paint first them when just tacky dry I painted over this with burnished gold and swirled it about a it , so now the frame looks all old and antique ,mmmmmma bit like me then Now I'm sticking on loads of those kids plastic jewels , you buy them in packs for about ?1 in the UK all sorts of sizes and colours and making a really expensise jewelled heading for the frame ...............OMG then I'm going to cut 2 eye holes in the back boarding and make a cover so that you cannot see them . Cover the inside of the frame with all the dragon stuff I have , like how to fly and pictures of that and dragon signs and symbols , in the middle of the frame and in line with the 2 eye holes I'm going to stick a very large dragons head , cutting out the dragons eyes and sticking these to the piece of moving board behind them ......if you get the picture ??? SO when a child comes to look at the picture frame one of my crew can draw back the eye hole section at the back and stand and look out of the 2 holes ...........at a distance the picture should just look normal , but near and you'd see the eye's move ...............well creepy I just love doing this sort of thing for Halloween , what about getting some stuff in and having a go yourself , you can take your time and store it away ( as I do ) for the big day , the kids just adore all the creepy , silly and interesting things I make each year , and I , well I just am never board , ever ..............AMI

Well , before I even had a chance to try my knock em out cold tablets .................my dear old body gave in . I went to go into the bathroom and suddenly felt sick, down on my knees over the loo ( as you do ) then ..................hubby was picking me up from the bathroom floor , dont know how long I was out , couldnt walk so had to be half dragged /half carried by hubby and son to bed . Kept being sick into a bucket for about another 3/4 hour ( how delightful for all) then .............out cold for 14 hours . I woke up at about 9 pm last night dying of thrust and manged to sip down a cup of juice then .............out cold again ...............woke up at 4 am this morning and drunk another cup of juice . I'm OK now sweating , and very tired , but my husband said he could see it coming on the morning I was writing on here ( the 21st I think it was ) he said by lunchtime I had the grey /yellow look about my face and he thought 'oh, dear , here we go again another bad session for her ' and was just waiting . He heard me go into the bathroom and start to be sick , so he want to get some water and a towel only when he came to the bathroom door it was stuck , so he called me .........no reply ..........so he forced the door open and found me looking like a sheet of paper on the floor. Never mind , another episode over , until the next . Ami.

Thank you so much ...............he is so sweet and so much like the original photo , well done you . I'm still working on my 2 foot owls , in fact my best friend in Suffolk has just ordered one for the owlery in the name of ' IMA ' ..............my name backwards. I feel so honoured to have an owl names after me , and it took me some few minutes to realize it was my name probably due to yesterday 'episode' . Well done Melanie , keep up the wonderful painting , you have a natural talent. AMi

If you click on the above link to my photo site you will see Jaffe , hubby put her on this morning . AMi ...........tired, sore , tired and falling about like I'm drunk at this time , not good , not nice .......sleep..............I need sleep .

Thank you all for your replies and help , I'm not having a good day here at the minute as just been given glasses to wear all the time now I thought everything was a bit blurred at times, and I haven't been able to read the c-fax on my TV at night . I haven't been able to get even an hours rest this afternoon so tonight I'm thinking of 'knocking the old girl out cold' I am allowed by my doctor to mix and match a number of drugs to do this ( with reason that is ) so I know my limits of what to take , its either 7.5 mg of zopiclone, 20 mg of diazepam or whack a morphine patch on and be away with the fairies for 3 days ......... still hoping that one of these this will work. Tired is an understatement and of course with the excessive tiredness I've now got even more pain all over , and I keep walking into things , dropping things, miss judging the distance when putting cups or plates down , oh , boy do I need sleep . AMI

Today I finished number 3 an owl called 'Jaffe' sponsored by a local feather company OMG is she cute or what ............now dont think me cruel , but having had a long talk with her and assuring her it wouldn't hurt ...........much ........... I cut her ears off Then using both cream and white smooth feathers and cream and white fluffy I've made her into the 'baby's the owlery ( more owls to come yet guys) so she has all this sticky out feathers on her , just like a baby owl when its trying to shed those fluffy down ones ................ I also had this great idea for my sponsors, instead of saying they have sponsored the owl , they can adopt it and be its absent parents ...........I thought this would be nice for a child to do if its parents wanted to do something for the children's Hospice. So each person who wants an owl will get a full size photo of the bird , they get to name the owl ( within reason mind you ) and get an adoption certificate telling them when it was born ( made) what it like to do and what it like to eat best . As well as this whenever the show is running they can come and visit the owl they have adopted and ( as a child would ) talk to it , pretend to feed it or brush its feathers . I think this is a much better deal . especially if you are a child . My best friend in Suffolk wants one now so that's another one to add to my collection , dont quiet know as yet what colour or if male or female , I am having such great fun doing these and hubby's quiet happy sitting here being watched by their eyes everywhere you move in the dinning room or lounge ...........wonder what a burglar would think if he tried it this time . AMI.

So here I am again up at 5 am , I've been up since about 2 am because of the pain I have problems sleeping all the time , but when this hips pain starts , which is just about every single night I cannot lay in bed anymore. My hubby has likened me to some demented spinning top when it kicks in because I cannot lay still and roll from one hip to another .............but in slow motion and with great effort , a lot of pulling on my bed rail , slight quiet under the breath swearing and a lot of ouch, ahhhhhhhhh and grunting . I take oxycontin at night at 40-50 mg but feel this is much to low a does as its not having any effect at all now. I start to lay in bed on my back to watch the TV which is fine , in fact if I lay on my back when awake I dont get any pain at all , yet when hubby comes to bed and I feel I might be able to sleep I have to lay on my side ( either one ) as I've found strangely enough if I fall to sleep on my back I wake up with the most painful low back ache going and I'm as stiff as a board. So I lay on my right side and about 15-20 mins having just gone to sleep by then , the pain comes in to this hip and is running down that leg ............followed by about 10 mins later by the other side . So I roll onto my left hip , becuase the leg pain is bad on the right side and 10-15 mins later the pain is in the right hip and in the leg . It seems that which ever hip I lay on the pain starts there then runs down my leg , followed by it then radiates across to the other hip , as soon as I turn over it does exactly the same again ............so I'm going from hip to hip sleeping every 10 mins or so until I'm in so much pain and hubby's going crazy because I'm rolling around the bed trying to get some pain relief . I cannot possibly lay on my back because I wake up with pain there and my front is also out of the question because I cannot get breath laying face down . I've tried dong the recovery position .........but this sends pain down both legs and across both hips at once Has anyone , anywhere got any suggestions as to what to do ????. My own doctor doesn't know how to help , the hospital consultants are useless they suggest pillows ..............which is about as much use as a finger in a burst dam I am SOOOOOOOOOOOOO tired today , I haven't had sleep for about 10-14 days for more than a couple of hours now ( day time ) and I'm not sure just how much longer I can go on without some reasonable sleep before I fall down in a heap , I also feel very low at the minute which is not me at all , as you all well know , so I'm thinking its this sleep deprivation thats doing this along with the constant pain. I can manage the hip/leg / arm/hand / fingers and every other pain daytime, its just this constant lack of sleep with the constant pain thats really getting to me at this time guys. Ami ..............miserable , tired , sore, stiff and trying to keep her eyes open while typing this .

Hi, sorry to hear about this awful problem . I used to get an infection quite regularly , but found that if I had at least one glass pf cranberry juice a day I could keep the bugs at bay , its something to do with the acid in the juice or the other way around , the acid in the bladder , sorry cant get my brain to work this morning yet . Is the infection tracking to your kidneys giving you back ache or are you just getting a low pubic pain , are you also having the old 'must wee every 2 seconds ............then pain , pain and more pain when passing just a teaspoon of the stuff. If the answer is yes to the kidney one then its a definite antibiotic job , but with the other two you must really drink, drink and more drink , especially the cranberry juice , I cannot help you with a name of an antibiotic as its been so long since I was taken ill with an infection , but I'm sure your doctor will give you something to knock it on the head as soon as they see you . I dont know if you are male or female from your name , so I'm taking a risk and saying your one of us lot of loonies ( a girl) I was told in no uncertain terms by a very eminent gyne doctor the following things what you must do if you want to stop getting all those infections , so I'm passing them on to you , some you probably know already , but some are not so well known . The first is the old wipe from front to back routine ( I hope you know what I mean , if not email me and I'll tell you in person ) Then never use those special female deodorents on this 'delicate place ' or use any other type of perfumery stuff . Always have a cotton gusset in your underwear , if you dont have all cotton underwear and always, and I mean every single time go to the loo after you and your partner/husband have been close together ................I'm not saying anymore about this bit but it works for me and since following these simple rules I have kept away all infections ( touch wood ) for 7 years now , not one , nothing , not a hint of a bug in sight and my goodness is that good !.............. I hope this helps a bit , sorry I couldnt be on the ball with any drugs , but at least you know that someone here is thinking of you and hoping you feel better soon , there's nothing worse than a kidney/ bladder infection to make you feel low. Look after yourself............. AMI.

Well Lord V is there now in all his black fluffiness...........he's got rather a cute face I think . but the problem is now ..............just what do you do with 2 - 2feet tall owls covered in feathers ???? Our loft isn't very dry , so thats not a good idea, I haven't got a cupboard big enough , so thats out .............it looks like they will have to sit on the window cill from the dinning room to the conservatory and just stare at anyone who comes in Sorry haven't been able to sort out my dragon yet as had a rather bad day again , just got up to do this and now having some mother day tea then off to the land of nod again. Hope you like this one .................Jaffe next a cream coloured owl . Then my red/gold Phoenix .............then more owls ! http://s75.photobucket.com/albums/i318/ban.../miscellaneous/

I've got a dragon ..........I've got a dragon .............I've got a dragon Today I went into town to help my son sort his birthday money , well help him spend it really And I went into this posh toy shop to look for a wooden flying seagull..........one of those ones with wings that flap up and down , not that I wanted a seagull ............anyhow I found a red parrot..........which I bought instead , but I didn't want a parrot either by now you will think me completely bonkers ........na , just clever What I'm going to do is get hubby to screw the wings on the parrot and I'm going to make him some legs and wire feet , so he can sit upright on a perch .............get the picture ........parrot on a perch ................well add to this half a ton of bright red and bright orange feathers a new beak and head and what to you have ???? A fire Phoenix sitting on a perch with 2 foot long tail feathers clever or what ???? Anyhow looking about this shop I spied an egg .............OMG a dragons egg , no I'm not pulling your leg I've got the box and all the bits here , so son treats me to this for the show , I'll take photo's of this so you can see what I mean tomorrow . So still looking about and I spied a small red dragon hanging from the ceiling asking the shop keeper if it was a back pack , he said no , but they did have bigger ones, OMG he took me outside to look in the window and there was a 4foot black /red and gold dragon ................needless to say I carried him lovingly home with me and he's now sitting on my bed watching telly ( he likes westerns best ) he's gorgeous , so I'll take a photo of him tomorrow as well . As for my owls ..................enter the Lord V ................he's .....well ,wait until you see him ( photo tomorrow ) it took me ages to finish him and he's taken all my black feathers but he's..............wow. Right I'm off to sit and have a natter with my dragon and watch telly , hubby's snoring away on the settee after another bad day head wise...............so its feet up , telly on and a long conversation with ????? any ideas what to call him greatly received . AMI

happy birthday Melanie Hope you have a good mothers day to , for tomorrow. AMi

Yep , me to guys. Here I am up again at almost 6 am now , I've been up since 3 am just pottering about doing bits here and there . I was so shattered when I went to bed I didn't know what to do with myself , that was at 6 pm last night , watched TV until 10 pm then suddenly I was awake managed to settle down and fall asleep at about 12 o'clock .............then the itching started .........and up again wide awake at 3 am , so in all I've had 3 hours sleep and this has been every night this week and last week and forever . I'm so tired I dare not drive at the minute or operate anything electric or with sharp knives . So it appears this is another little 'nasty ' our bodies are playing with us all. AMI

Hi Lisa , This is rather a long answer so pin back your eyelids , take the phone off the hook , make a cup of tea/coffee and read on ........... I have Raynaud's and blood pooling , your symptoms sound more like Raynaud's to me . When you go into cold area's like the fridge or freezer do you get a sudden of set of very painful fingers , and the pain seems to increase the longer you are in this cold area until you cannot stand it anymore ? And if you have been in the fridge or holding something very cold like , milk carton or tub of ice cream afterwards do you get so much pain , then throbbing that you dont know what to do with your fingers , I'm talking pain that makes you want to cry .? If the answer is yes then its probably a 'welcome to the Raynaud's club'. I have it in my fingers, toes and the end of my nose ........... You should go and see your doctor explaining about the fridge /freezer problems and all the other cold related problems you are having with your hands . They can do tests , I had them done about 30 years a go so they may be a bit out of date now . 1.........they place your hand in cool water then photograph it with a thermal imaging camera ..........mine were coloured blue /green on the fingers and almost black at the ends , but definitely not a nice pink/red colour. 2. They blow cold air over your hands then photograph them again. 3. They look at your nail beds under a special lens , dont quite know why this one Anyhow mine where all positive , along with toes and nose ( most normal places for it ) Having it in the end of your nose may sound and look funny , but when its just a little bit cold outside or I get a blast of air across my nose on a sunny or warm day my nose goes red/ blue or stone white ( mostly bright red ) and I look like I'm a heavy drinker but I'm te-total and my nose really hurts , so I have to walk around with a scarf e over my nose in Autumn/winter when I go out ALWAYS . The answer to the question what do I do is simple ; HANDS. First you buy up as many pairs of gloves / mittens that you can find , anything that will keep your hands warm . You need to put gloves everywhere you can think of from now onwards; the kitchen, bathroom , in the car, garage , garden shed , handbags , spares at friends or in there cars if you travel with them a lot., all your coat pockets ...........the list is endless. You can also buy these little plastic pods that have a button in them , when this button is pressed it releases a wonderful warmth into the plastic gel like substance , this warmth lasts for up to 2-3 hours and has been a life saver to me on a cold day when I need to go out. I have to boil them up to renew the heat but the new ones go in the microwave ( I think) FEET. You will need to buy some thick soled winter boots that are lined with lambswool and some very thick thermal socks ( 6-8 pairs should do it) I also wear ankle length thermal boots with my jeans or trousers most of the time and very rarely wear shoes now a days . If I'm going somewhere 'posh' like the wedding I went to last year , I travel to and from the wedding in ankle boots ( I have every colour you can think of ) and then change to my best shoes at the last minute. Never go out without shoes on your feet , I know this sounds crazy , but I once rushed to catch my granddaughter from falling when she was a year old ( only onto the grass) I forgot and walked onto a cold concrete path , the pain was so bad I scared the child as I fell down holding my feet ..........needles to say I haven't done that again since ! Also never do any of the following things as the repercussions can be awful............ NEVER EVER go into a fridge or freezer without very thick gloves on them , OMG I've almost passed out with the pain doing this . NEVER go into a shops fridge or freezer to buy something without your life saving gloves NEVER...... put your hands under cold water to wash them .............another bad move . NEVER......... reach into a swimming pool, the sea or a large deep puddle to retrieve something a child has lost ..........ooops to late forgot ! NEVER.........go into a swimming pool or the sea without testing the temperature of the water first , this means you will always have to ask someone you can TRUST for help , dont ask someone if you think they may say its alright when it isn't ' just for a joke' ................I've been at the end of one of these ' just for a joke ' and the pain can be excruciating along with the fact that if your Raynauds is very bad you risk falling into the cold water with the shock of it and then getting hypothermia and being rushed to hospital ' just for a joke ' NEVER put your hands/feet into hot water to make them feel better.............NEVER ever do this or you will end up with chilblains on them or ( as I've been told by the doctor) you can damage the nerves /blood vessels in them . The end of your snow ball playing has arrived along with making snowmen UNLESS you invest in some electrical heated gloves .........absolutley brilliant , best thing since sliced bread you should be able to find these on the net as I cannot tell you where mine came from as they are a present of someone ages ago . If you want to know anything else ..............yep, there are other bits and Bob's to this rather long answer ( sorry ) but if you do have Raynaud's to really must look after your fingers /toes and I cannot stress how important it is . AMI.

hello Tanzanite , my heart goes out to you girl , Its why I'm up again at 2 am in the morning . I've got the same problems as you , sweating , raised temperature ( especially when I eat 101++ at times ) soaking beds, clothes , well just about everything I touch. Things slip out of my hands they are so wet as well so I have to be very careful when carrying things . Do your hands go bright pink and swell up to , stiffness with the swelling is down right nasty. I have the following list of things I do; 1. Wear thin cotton or polyester/cotton kaftan's and nothing else underneath ( full length ones I might add) 2. Dont eat anything hot or foods with hot or spicy items in them. 3. drink gallons of cool fluids , not freezing cold as this can make matters worse I've found. 4. Dont drink hot cups of tea or coffee only finger warm. 5. Have loads of those menthol pads to stick to my forehead, back of neck, chest or any other place ( base of spine is a good one when laying down) 6. Have a slow running fan directed at my neck and chest when laying in bed / at the table / watching TV etc. 7. Take clonidine to help with the sweats . 8 eat loads of low calories water ice- lollies when I'm really having a bad one. 9 Dont sit in the sun or under a sun brollies , you need to be inside in a cool building at all times. 10. Try not to get stressed as this makes mine worse , whatever it is ............so what , let it go over your head , its your health you must protect , not the price of a bag of sugar or the dog weeing on the floor , get your other half to sort it. 11.Never lay flat when you cannot get breath , and also dont panic if you cannot get breath , it only makes it worse. Speak to your cardiologist and ask if you can have a bottle of oxygen , just for when you find it hard to manage at time like this, if he's an understanding man he will get one at your house in hours /days . I know its hard , I just take everyday as it comes , every hour thats a good one is the best hour ever and every day I can get through without to much pain, sweating , falling , blackouts or just losing hope ( if you understand my meaning ) is another day when this condition has been put in its place . Keep smiling and keep hope , I'm thinking of you .............Hey , in honour of the group and of the gem that I think is the beautifulest gem in the world I 'll name an owl after your name for my charity event 'Tanzanite' a white & cream owl , lilac chested with small flecks of purple in it ............and I'll write a short section in my sponsors lists about the DINET site and POTS ............ Better get working or I'll be making them there owls in my sleep soon, you take care , lots of love and hugs coming your way ( by owl of course ) Ami . XXXXX

Hello Bronwyn , welcome to this wonderful site.......you make me quite jealouse, oh, to live in Australia , my husband and I would love to do that .........I'm 1/2 Scottish + 1/4 English + 1/4 Italian rather like someone who's been put in a blender ! We are all suffering from a form of POTS in one way or another , so your first hurdle has been over come as we understand what you and your family have been going though. The support , understanding , care and concern I have received here is exceptional and its not just directed at me , but at my family as well , the guys on here are just wonderful .............its like coming home to a huge family who all understand what you are suffering , so hello and come on in the doors always open We all understand just how hard it is when you try to get a doctor to actually admit what is wrong with you , let alone stick to that diagnoses , we have all been down this road and it is an awful situation to be in , but its not just getting the diagnosis its also the little things that a doctor cannot answer or just doesn't know that makes this site so good. If one of us haven't got it , hasn't had it , or is keeping it under control ( whatever it is ) then you can bet we can find an answer somewhere for you on the net . I look forward to speaking with you again at sometime soon. Bye for now as I'd better get back to my glue gun or I'll stick the table to the table cloth ..............look after yourself and keep your chin up girl , you've found the greatest set of friends a girl could ever wish for ....................Ami XXXXX

Right hubby has been photoing my owls and my outfit and here they are as promised. Topaz ( white owl) is now finished as you can see ( back/front view) Lord V the black one is 1/4 they way there and Jaffee is started . My dress is wonderful , it has a purple silk insert to the front , I'm going to have this special mystical pendent to wear around the neck . And the cape I picked up for a cool ?30 from a clothes shop that had some seconds in it . So my outfit is almost finished all I need now is a pair of those multi coloured stripped sock's that witches wear Hope you like the photo's , blimey it is hard sticking all them feathers down. http://s75.photobucket.com/albums/i318/ban.../miscellaneous/ Ami