im confused

sparkly, ruby, shoes......and a BIG THANK YOU

2012-01-16T17:36:00.002Z

today a big box arrived from Australia, while i was asleep. rosy took it upon herself to guard the special delivery.

please hurry up and wake up. you spend all your time resting, even more than me!!!

rosy wanted to show you the cool stamps.

at last.

i like the box, I LIKE THE BOX, i will wait here until you open the surprise

i like the feathers, please let me have just one, red please

ahhhhh, do i look pretty?!

purple one looks good too,..... may i?

thank you, thank you, thank you, i like the purple one.

whats in there, i can smell great dane, a dog for me two small dogs for me!!!!

pretty, sparkly, ruby red shoes!!!! my owners happy!!!!!

a pretty card too. the above parcel was delivered today to a very happy emma. i want to thank michelle for sending me this happy parcel of wonderfulness. from the wonderful packaging, feathers (which by the way rosy loves, really truly tickles her), to the pretty card.

keep watching. these shoes are going to go for a little outing soon.

anyone potsie head over to michelles blog to see her wonderful idea involving ruby red sparklies and be inspired.

thanks michelle, coping with this illness is no mean feat (boom, boom!!!). youve been suffering terribly, yet amazingly you continue to spread happiness, the word on pots, and of course ruby sparklies.

from rosy and me, thank you. xxxxxxxx

bare necessities

2012-01-12T20:37:00.003Z

dont look around for things that cant be found.......

chocolate squirrel

2012-01-09T19:57:00.000Z

feeling out of salts at present. will continue to read/comment on blogs, maybe just not write for awhile.

will post any pictures i take, including this chocolate eating squirrel. dont know whether this is funny or sad.

every time i drive past........

2012-01-03T14:41:00.000Z

this block of flats in battersea, i get a glimpse into the lives of people. reminds me of a dolls house. tinsy-tiny belongings cluttered together for the world to see. amazing.

a years new

2011-12-31T20:05:00.000Z

Ive a cold. Nasal, heady, cold. Seems to be doing the rounds, maybe sarah attishoed in Essex, over Kent into Surrey. Your going through upper body viruses at present sarah, hope you recover soon. x

I was able to go out today, even though my forehead felt like a fish was swimming around it in. Hot to the touch. Sore throaty. A cuppa was sort, outside we sat due to the little darling that is Rosy. She had her walk, homeward bound.

Why is it that mornings and nights are always the worst with colds? I'm laying here now, t.v on mute, pillows behind my head, aching. Yet earlier i wasn't so bad.

I don't make resolutions. To tempting to break.

Take care everyone. Happy new year, and all that.

I'm liking the round 50 number of the followers. Pleasingly rounded off. Not so keen on odd numbers. Nope I haven't had a drink, just liking the number.

xxxx

2011-12-26T20:37:00.000Z

im tired, tired,tired. why because of the 25th. nope. i paced myself throughout the day. midday a push/walk around crystal palace to walk rosy. soak in the evening to ease my bones. pleasant day.

today, i went to brighton. day out. i was going to wait down below on the brighton eye (not sure if its called the eye, seeing as the london one is called this i just refer this as so), as rosy wasnt allow on the pods because she is a DOG. no dogs allowed, only guide dogs.

however the the girl at the desk, asked her manager over, the kindly german man, he say (after a little bit of persuasion) YES. the manager did worry about rosy going crazy, dog barking crazy, when she was going round. he neednt of worried. the above picture shows.

peaceful christ mass

2011-12-24T19:18:00.001Z

everyone.

happy third bloggy birthday to me..........

2011-12-08T21:09:00.001Z

3 years old today.

im being checked out for .......

2011-12-07T17:31:00.000Z

diabetes. i really dont think i have this condition, i really hope i dont anyway. my sister has it.

i saw the neurologist today, the local one, i mentioned a few of the symptoms, one being an incredible thirst. im sure its a POTS thing. i cant drink after 9pm, cause i would be peeing all night. in the day i could drink, yet i can drink lots because the liquid comes back up, urgh i know.

so next week i have to go back for a blood test, and collect my pee for 24 hours, yuck.

never mind.

2011-12-03T10:02:00.002Z

The back I think is improving.

Thank goodness. Theres still a bit of arrr-ing going on, not as much. Two appointments next week, neuro dr, usual check up. And an assessment for an, wait for it, electric wheelchair.

oh no, its kind of confirming that this is it. ive been using a manual one now for nearly three years, outside of the house. first off i borrowed one from a friend of the dads. that way i cleared it in my head that its a loan, not mine, someone elses, the dr will find out whats wrong and i can return the w-chair.

after beind diagnosed, then came my chair. now an electric one. big step. i should see this as a positive step forward. i know its getting over the initial step, then i will be fine.

nah, i will be ok.

me refuse a day out,......

2011-12-02T09:54:00.000Z

the sun is shining here this morning, brighly as a december sun can shine.

what with the mrs overall back, the mother offered kindly to go out today. now friday is a busy day for the m, my first response was ok. then i thought perhaps its not such a wise idea. im feeling sick, pained back, i wont be in a happy mood. the m said that there will be rain over the weekend, take advantage of the sunny sun.

i cant, today will be a normal.

now my backs gone.

2011-11-30T18:49:00.002Z

to top it all off, my back has decided to go, along with my ankle, and wrist. nice.

i feel......

2011-11-29T16:39:00.001Z

sick and stressed.

the other pictures......

2011-11-28T17:21:00.000Z

mesmerized by the christmas baubles. loved em.

big tree!!!

gold man.

silver lady.

a little treat. i would recommend the milk chocolate slice.

shared with a cuppa.

the garden was visited today. the covent one

2011-11-27T20:03:00.000Z

sunday. lots of peeps. and entertainment.

a cat basket i thought, on a table?

i was wrong it was a dog in a cat basket, or was it?

it was a human, pretending to be a dog in a cat basket!!!! the human dog, spoke to rosy, rosy stared and stared. the thing is when your in a wheelchair, a manual one at that, you cant do anything other than sit, because the pusher has control. so theres me wanting to go,go,go, and theres is the mother watching,watching, watching. i had a silly grin on my face afterwards, the dog/human was very funny.

im cold now, well not now i was. when i arrived home, i hopped in the bath, then in bed with a hot water bottle. heating on. warm. will post a few more pictures tomorrow.

stanmore

2011-11-22T21:19:00.000Z

stanmore peeps say yes! eek. sometime next march i will be winging my way towards a three week stay. will i manage? will i cope? im not sure, i need to do this for my body. preparation is in order.

added some holly berries to the wreath, looking pretty.

not feeling so good, thats an everyday occurrence, so nothing knew, feel a little bunged up, hot. the foggy weather doesnt help. sure the traffic fumes dont help either, mixed it today with the fog and you get a dirty looking smog swirled across the london skyline. not pretty.

winter wonderland - hyde park

2011-11-20T19:56:00.000Z

decided to do something different today, a friend suggested having a mooch around hyde park, the winter wonderland had arrived. not feeling too good, the mist descended over south london this morning so my breathing wasnt so good. managed to park up, grab a tea the view above was taken in between sips.

winter wonderland, was packed. noise from old fairground rides, german chalets full of customers eating and drinking, sweet smelling candy floss, along with the usual cooked fare, people shuffling along, lights flashing, ah you get my point. an overload for my senses. since ive become ill this environment can be overwhelming.

wrapped up warm. i worked my way through three handwarmers. i would recommend these to anyone who suffers with cold hands, one little click and you have a little pouch of warmth in your hand. then simply boil them up to renew. my hair has gone wild!!!

quiet was needed. so we had some lunch opposite the serpentine. peaceful. i could concentrate again.

peter pans statue in hyde park. sweet. with an aching neck that wouldnt stop, we headed back to the car. exhausted.

tad-dah

2011-11-19T13:52:00.000Z

i did it........ soon to be a tah- dahhhhhhhhhhh moment.

2011-11-18T17:28:00.000Z

i wouldnt advise making a holly wreath, its bl**dy painful. scratchy hands, ouch, sweary words, rosy scooted out the room.

im actually quite proud though, because its actually round in shape!!!!!

it looks like its meant to look, like a real bought one!!!!

photos will follow.

ive nicked some.........

2011-11-17T18:05:00.000Z

holly. is that illegal?

im trying to feel enthusiastic about the christmas thing. so whilst the mother was parked debating whether to take rosy for a walk, i managed to hop,skip, and jump (well not quite,) walked four paces and stole some holly from a tree.

my intention is too make a holly wreath. i had gone armed with secateurs and a large bag, so this crime was pre-meditated. the lax criminal that i am never wore any gloves so, received a number of prickly ouches on my hands. i went in the dark, snipped some branches off while rosy became the look-out, mostly wondering why she wasnt allowed out of the car to have some fun too!!!

so tomorrow, if im up to it, a circular shape will be made, and a wee tartan ribbon affixed to the top.

if all goes to plan that is. otherwise my short temper may get the better of me, and the holly will be no more. pictures will follow.

you know whats making me happy right now?

2011-11-16T20:13:00.000Z

this past week ive been feeling kind of ill. nausea, g.i. issues etc. thirst, i cant drink enough water, i have to balance this out because otherwise i wont eat. yet the past couple of days, every time i eat, drink im feeling the nausea.

with this comes other problems, last night when i got up to go to the loo, i walked into my bedroom door! i thought the door was further away then it was, bang, rosy barks thinking im an intruder! good dog.

heat intolerance. im hot, i drink tea, im hotter. i feel ill when i drink, i feel iller when im hotter. i cant win.

so is this making me happy? no

ive been opening my window early evening. its cold here now, yet the coolness helps. you know what ive been hearing when ive opened the window?

an owl, yep twitting and twooing. i cant believe that an owl is somewhere in the trees. well actually i can, the last time i heard it was just over two years ago, before i was admitted to hospital to find out what was wrong with me.

such a sweet, peaceful, cheerful, smile inducing sound.

this is what is making me happy right now.

the royal orthopedic hospital

2011-11-12T21:13:00.000Z

how did it go?

as always i wake up a couple of hours before hand due to the postural changes of slowly rising. had a headache which isnt pleasant on the day of an appointment. i expect a little due to expectation.

     rosy was dropped off a doggie day care - my sisters for the day.

i know i have complained before about traffic, friday was no exception. as we passed park lane, opposite hyde park, there is a memorial dedicated to the animals of the first world war. due to the day 11 november, people were gathered around, plus three horses. just behind the concrete sculpture was a sweet little donkey with panniers on, made me smile.

from marble arch, its one straight road, 10 miles. we pass the men smoking from (i cant think of the names so will write a description) long silver pipes that are attached to some ornate piece of metal, plumes of smoke escape from their mouths.   pass st johns wood, huge houses. out the other side to slightly less salubrious parts of london. burnt oak, lovely name.

onto the royal orthopedic hospital stanmore. a relic from the 1940s. only just being updated.

not many nervys followed me, my headache eased after i had a cup of tea. i found the rehab section, met another lady, a nurse came out and we made our way to the conservatory.

i began to feel tired, i thought perhaps i was nervous, i convinced myself that i was because i wanted to go home and curl up in bed with a hot water bottle. my eyes were closing.

when the four course leaders came in i listened to what they had to say, wasnt keen on the thought of mixed wards, would i realistically be able to cope? right then and there i thought not.

there was around eight others with partners/carers in the room. they asked questions. then individually we were called out to be assessed. nearly an hour later, a little saddened by what i had to recall healthwise i emerged to come home.

stopped on the way back for a cuppa, was getting dark, yet i was on alert.   people will run out in central london, i was on edge incase they run infront of the car. im a terrible passenger!!!

when i got home, knackered, exhausted.

it will be a week before i find out whether or not im fit enough to attend. this will be a huge step for me. a challenge.   i will really push myself to the limit of comfort. will i be able to do it? i dont know.

i have also set myself another challenge - yep up for a challenge me, before the end of year, im kind of determined to go to france for the day.   the euros are going to be purchased this week, then on a spontaneous (planned ) kind of whim, were going to take off for the day.

will i be able to do it, i hope so. pictures will follow if task is accomplished.

stanmore here i come.....

2011-11-11T08:44:00.000Z

for the pre-assessment only. meeting the team today. i expect alot of waiting around. they are seeing whether my body is up to a stint in re-hab. is it? i dont know. we shall see. have a headache already. well ive had it since last night.

the trek across london, urgh, traffic, oh no.

fingers crossed peeps. xxx

a few days away.....

2011-11-06T16:05:00.000Z

one sweet thatched cottage.

a day trip to bath.

a visit to abbotsbury gardens.

a bird to keep us company,

cucko borrus in england.

thought this place might help me? nah

rosy on departure day.

im over tired. yeh exhausted. will need a few weeks to overcome the travel. glad i went? of course.

im off

2011-10-30T09:11:00.000Z

well i hope to be tomorrow morning. five days in dorset. feeling a little rough this morning, have been for a while but thats nothing new!!!

will take some pictures. rosy is coming to, had to find a cottage that would take a small adorable dog, found one.

staying near poole in dorset, an area ive been to before. so a short drive each day to the beach. nice.

off to the hospital in a while

2011-10-13T08:29:00.000+01:00

got to see the bowely dr. lovely. due to the ehlers danlos by bowel has decided to flop to oneside. dont know whats going to happen. at least the hospital is only local, so know trips across the otherside of london.

not the best of shots, its the content that matters right? an original fiat 500. a sculpture on park lane, opposite hyde park. will try and post some interesting pieces of artwork that i find around london, or anywhere for that matter. love this one.

i maybe going on a jaunt in the next couple of weeks. dorset. jurassic coast. going to book at the last minute, hoping this will come off. somedays by the coast, nice.

sad farewell to shelly

2011-10-11T19:08:00.000+01:00

you will know that shelly over at 'freaked' has a new job, director of nursing, good for you shelly.

flip side of this shelly isnt blogging no more, mmmmm. i will miss your entries shelly, your feisty-ness in the face of anxiety. your bugger it attitude, im going to do it anyway. i will miss laylas cheeky face.

of course you have to keep your privacy holding down such a responsible position, but im sure i and many others will miss your updates, your humour.

a big GOOD LUCK for the future shelly, thanks for being so honest, bold, and enthusiastic in your writing. xxxxxx

so......

2011-10-08T10:08:00.000+01:00

i cant believe how much nervy-ness i put up with pre-diagnoses. seriously.

we left plenty of time to do the 13 mile trip to kings yesterday. when i mean plenty i mean 1hr 15mins. i know crazy, with traffic, parking etc the time is needed. no parking spaces were available so mum swiftly pulled into the drop off point and wheeled me up to the cardiac unit. then mum raced back down to the car so as not to get a ticket, those parking wardens in lambeth seem to hide then pounce at any opportunity.

there was me without beta blockers since tuesday evening, nervy on edge, simply because i was sitting upright. i checked in, and waited. theres normally always a wait at the cardiac department, once i waited three hours before an appointment. however this time i just wanted to get out of there. i then began to think over my past. this is exactly how i felt pre-diagnoses. now i knew what the problem was, my tablets, fast heart rate, sitting up, legs down not raised.

i cant believe i suffered all those years. when a simple dose of a heart-slowing-down-pill would of helped.

anyway only a 15 minute wait. i was taken into a room, luckily i was able to lay down, feet up. the nurse tried to put a needle into my vain to put some liquid in (cant remember the name, there is a name for this). i have small viens, took a while of prodding about before one was found. was a bit apprehensive. the doctor told me what was going to happen. within ten minutes my heart was BEATING FAST. quite a sensation when your laying down. my face began to get hot, thump,thump,thump, my neck was pulsating. i had a slight shake all over. chest pain. i told the nurse this. the test was nearing the end. i think iodine was injected into me, i wasnt really with it by then.

test was over, heart-rate eased off slowly. the doctor will go over the results then send them to the dr that i see.

argh, not the worse test i have had. just not pleasant. i had to stay in the hosptial another half an hour incase anything happened. we made our way to costa coffee, sat in a cosy little corner. listening to a bunch of five drs talking about, wait for it.............. the change in jodie marsh, yes you hear me right. they debated that she was a pretty thing, before she became a glamour model, now she has become a body builder, well............... made me laugh anyway as they trawled through picture of her on one of their laptops.

very tired now, but fine ok. need rest. thanks for the well wishes. take care all.

11am

2011-10-07T07:40:00.000+01:00

i awoke at 6.30am, still dark outside. no caffeine, not even any de-caff tea. so water will have to do.

after stop taking the beta blockers within hours my pulse went up to 156bpm on standing in seconds. so no coming off the tablets in the future then!!! i WAS someone that wouldnt touch a tablet, now im taking the little red-uns with me to the hospital so hopefully i will be able to take them afterwards.

im sure i will be fine. kings here i come.

missing the little red tablets already.

2011-10-05T10:00:00.002+01:00

i shouldnt really show any affects for a few hours now. im hoping i wont be too bad.

funny steph, mentioned in her comment a treat for going through this. well on monday i bought myself a coat. i have a winter coat. a warm coat. which was purchased last year. however when i went into

i saw a lovely grey/black velvet coat. in the past i owned a rose pink velvet coat from laura ashley. lined with pink pinstripes. after a few years the velvet began to diminish, i had to let the coat go.....

then i bought a brown velvet coat from boden, to heavy for my body, the shoulders too narrow, so back it went.

then i saw this in monsoon. i ummed and arrrred. until i went back and bought it. lovely soft texture, three quarter length, gorgeous just what i wanted. with some pretty lining too.

off meds for two days.....

2011-10-04T19:55:00.000+01:00

so tomorrow morning im coming off beta blockers till friday. why?. im having a stress echo at kings.

i know standing will be a problem, i just hope sitting up wont be, then at least i will be able to get out.

anyone had a stress echo? the dr is going to inject some such stuff into my heart to make it beat,beat,beat, fast. although ive had an echo before, ive not had one of these.

hoping i wont pass out! ah if i do i will cope, im in the right place anyway, the cardiac unit!!!

brighton yesterday - hot weather

2011-10-03T08:00:00.000+01:00

mmm. a couple of weeks back when the skies were cloudy and the weather less fortunate for this time of the year, brighton seemed to be deserted on a sunday afternoon. no so yesterday. as you can see, sardines come to mind!!!! had a great day, even though i wasnt feeling tickedy-boo, rosy seemed whacked out by the end, m had her pedometer on - five miles were walked.

i expect this is the last of the clement weather. now we have snow to look forward too.

makes me happy

2011-09-30T20:10:00.000+01:00

years back when i could stitch! i stitched this pattern, then turned it into a cushion. a number of years after i decided to unpick the cushion and make it into a bag. well the bag was on the 'to do list'. the 'to do' wasnt done until now.

each day when i pick my bag up i smile, this bag make me happy. such a simple picture.

ive had a flare up

2011-09-27T20:59:00.000+01:00

the past three weeks ive had a flare up of symptoms. g.i. tract, bowels urgh. ive had worse, at least im not in hospital. its a pain. im hoping this will pass soon. keep your lovely fingers crossed people. x

nine - eleven

2011-09-08T20:34:00.000+01:00

thanks for the wishes of wellness. still trying to understand this illness.

twenty odd years ago i was lucky enough to visit new york city. dad had a job in Connecticut, so lucky little me tagged along. along with the usual touristy things, statue of liberty, empire state, hard rock cafe, bloomingdales, macys etc we took a trip up to the top of the twin towers. even back then i was scared of heights, yet i went up, and up, and up in the speedy lift. i didnt do lifts either.

when the top was reached, i was a sad picture, putting my arms out in front of me when i slowly neared the panes of glass. a few people including my brother slapped both hands on the glass and glared down. my heart jumped. i preferred to stay back. then we went up to the viewing deck. oh my the views, across manhattan.

like alot of people watching the 9/11 attacks, they seemed surreal. watching a movie. my brain wouldnt connect with the reality. this isnt real. this is real. i cant imagine what those poor people went through that day. the towers had such a presence, that day had a presence too.

sorry ive not been around

2011-08-16T18:53:00.000+01:00

ive had a bit of a pots crash. this afternoon was spent in bed with headache. im not really with it most of the time. hoping this wont last long as i have two appts next week at kings and i need to go.

been enjoying reading everyones blogs though, so thanks for writing everyone, they keep me company in the day. x

2011-08-09T17:24:00.000+01:00

reeves burnt out

gone.

sadness; overhead a young boy today asking his brother ' text dad tell him to take care coming home tonight'.

hope; a huge hells-angel type man outside croydon town hall with a broom in hand, waiting with a group of ordinary people to clean up.

2pm today, getting ready for another night of riots. when will it stop?

londons burning - so is croydon too

2011-08-08T19:33:00.003+01:00

what is going on? why is no-one putting a stop to this. will tomorrow bring another riot?

heard that kings college is having a bit of a problem, bringing in extra security, very selfishly i have an appt in a few weeks, i need to go to.

STOP

no trips to dulwich park. peckham has being experiencing riots tonight, dulwich is just up the road.

i cannot believe my eyes watching news24. was this waiting to happen? probably.

9.20pm; spoke to soon croydon is alight.

too darn hot

2011-08-02T13:47:00.000+01:00

i know, us brits dont often get a blast of hot weather, its august for goodness sake, yet this temperture is a little hot for me. yesterday i got tachycardic sitting down, and laying down which is a first in a long time. usually i only feels the beats on standing.

its a catch 22, i love the feel of warmth on my skin, eases the bone/muscle pain, yet the old heart thats a different matter. today seems just as hot if not hotter. had physio this morning, early, although getting up two to three hours before i go out wasnt favourable, the cooler weather was.

last wednesday i visited kew gardens. ive been wanting to go for years. wasnt disappointed. was extremely tired, so perhaps i picked the wrong day to go, yet i enjoyed.

sackler bridge. felt like you were amongst the ducks.

pretties

waterlillies

i love my bike

2011-07-31T20:48:00.001+01:00

this is my 1950s bike. purchased in vauxhall, south london. its been, well everywhere with me. done many miles. one trip, i cycled 24 miles in the july heat in spain, stupidly, a dip in the pool on the return journey was much needed. cycled up hills, one steep hill near crystal palace, i remember a modern cyclist past me gears and all, half way up the hill i saw him off bike walking, whilst i rode past, without gears, concentrating on my pedal movement, right to the top!!!! pleased.

will i be able to use this lovely machine in the future? probably not, should i pass it one to someone that could? maybe. the idea is to clean her up, make her sparkle, then pass her on. (im still getting used to the idea of passing my unusable things on, a lot less traumatic then saying, getting rid of them).

since january ive had a clean out. lots of treasures, have found new homes. i still feel a tug, a pull, the items dont define me, yet why do i feel so attached?

losing this bike will be a biggy. i love my bike.

stanmore

2011-07-26T18:06:00.001+01:00

yesterday was my appt at stanmore. first off i had at 9am i had therapy to attend. then straight from there drove across london to north london. this amazes me to do 20 odd mile it took 2hrs, can you believe that? headed towards marble arch then straight up the a5, easy-peasy one 10 mile road to stanmore. traffic. lots of people. lots of photo opportunites, lots taken, lots not. along the edgware road there are lots of hubber-bubber pipes, eastern men inhaling whatever is in the pipes, was going to take a picture, however the traffic was dense, i didnt want to risk an angry pipe blower approach me in a static car so i resisted!!!

we arrived three hours early, oh me and my times, so ended up in a country park, lovely warm day, pretty view across a lake. did feel a little weird attending a hospital appointment, yet sitting relaxed in a park. normally im tense, anxious, scrunched up, waiting,waiting,waiting. must remember this is a nice approach, for next time.

adopting a potsie pose, must keep those feet uplifted! oh i made the v.top myself

note, my body does well without rushing. turned up half and hour early. then another half hour wait. i was hot, bit nervy and on edge. yet ok took my pulse it was 49bpm, i do wonder sometimes what is going on with my body.

the dr was nice, what a rare species. kind of with, polite. she understood bendiness. has put me forward for the three week course, how i will manage i dont know. must work on my anxiety. thinking of going to see a hypnotist, or try accupunture. any ideas?

came home, tired, pleased, exhausted. spent all day today feeling much the same.

maybe going out tomorrow for a treat. will post more if so.

nausea urgh

2011-07-21T09:41:00.001+01:00

i wake up in the middle of the night and its there, i wake up in the morning its there, urgh. nausea. fingers crossed this doesnt last long then a few more days. sorry if im making no sense, i get very confused too.

physio

2011-07-18T20:44:00.000+01:00

early morning appt with the therapist, followed by late afternoon appt at mayday for physio.

mayday, mmmmm, an old building, old and tired. i entered the physio department managed to book myself in. waited for a little while, a tiny little south africa lady came out, my name was called i wheeled myself in. passed a nifty little pool, i would of loved to have jumped in and had a float. thought better of it. 'what part of do you experience pain in'? mmmmmmm, i worked from my head down to my toes, that way i would remember each joint. she decided there wasnt time to look at all my joints so worked on my neck (my most painful) and shoulders. she also wiggled my shoulders and told me my right one is the one i have my trouble with, yep sure do, sublaxes. was nice to be on the same page as a health profession. for so long, i had been told there was nothing wrong with me, nil, nada, zilch. now after twenty long years, my body is being recognized, given the meds, therapy, physio it finally needs. i left with a slightly painful neck, but happy.

symptom of the week......

2011-07-17T21:16:00.000+01:00

any guesses? yep nauseous.

i hate when this symptoms covers every part of your being. follows me around, with no let up. has the cheek to stay when im eating. pre-diagnoses i wouldnt of let food touch my lips if nausea was present. yet now, the sad fact is if i dont eat/drink i will end up in hosptial on a drip. something that i can live without. just because its there, doesnt mean im friends with this invisible crank. domperidone does try, really hard, most of the time little dommie works, some of the time it doesnt.

rosy is joining me this week in the pillfest. she has pretty little red ones, oh and some powder. shes perkier. maybe i should down some of her meds!

on a brighter note, i have a local nhs physio appointment tomorrow. fun, mmmm. not sure whether they will be in-the-know enough about eds/pots. whether when i tell them i may have a place at stanmore they will say, ah we can discharge you without even seeing you!!!! ive not even had the pre-assesment at stanmore yet, thats next week, so should i mention this?

I'm better

2011-07-16T20:16:00.002+01:00

bit of a day, but turned out alright in the end.

2011-07-14T20:53:00.000+01:00

please dont read if your of a squeamish disposition, me included.

poor little mite that rosy is. first it was her bladder stones last year, now its her bowels, or colon to be more precise. today while being pushed around dulwich park she decided to have a poo, normal you say dogs eat so they poop. well this was very unpleasant, for all you yorkie/dog owners out there this information may come in useful. rosy pooped mucusy blood. lots of it. arghhhhh, home we came, checked the vets number and times out. she went twice more, panic stations.

was outside the vets before it had opened, ten minutes later, out came mum with rosy. she has an inflammed colon, which produces these symptoms. relief she has some tablets. poor baby, shes still not herself, dozy eyes, very placid, yet still she wags her tail.

she had a lot of gurgly noises in the week, brought up bile, soft stools, then todays episode. its something she has to live with, although we have to watch what shes eats, let her take the pills if she experiences the symptoms again. poor mutt. xxxx

the winner is.......... & the holiday

2011-07-09T14:53:00.003+01:00

the names.....

rosy guarding the hat

the winner. steph over at the panic room. e-mail me your addy steph and the leaf bag will be winging its way over to you next week.

------------------------------

the cottage we stayed in was teeny tiny, oh so characterful.

im 5'8'' as you can see the ceilings werent that much taller than me.

so charming and gorgeous. even rosy took to the place.

she especially liked the low windows, so she could in some comfort watch the world go by.

we experienced a little rain, what would an english holiday be without a little of the wet stuff!

seasides, we visited, cromer,wells-next-the-sea, hunstanton, sheringham, kings lyn.

now the health anxiety bit. monday of last week mum phoned up the booking agent after we found the place on the internet. tuesday morning we were off. due to my health problems i found this way to be a good compromise. instead of having something booked way in advance.

packed and ready to go, i felt abit out of my depth. bit overwhelming. i expected to be a bit nervous due to the failure to go to france. yet troublsome feelings were there. the first half and hour i could of easily turned round and come home. this was my first time away (other than a few visits to my aunts) since i became ill. the next hour was a little easier, but still uncomfortable. we pulled in at a service station for rosy to have a walk, i forced myself to drink a tea. one we plodded. slowly but surely things eased off.

we arrived late afternoon, after another stop. i was buzzing from the journey. when i was little and we would travel for three or four days in a row i noticed at the end of each day i would still be feeling a strange buzzing feeling from the journey, took a while to settle down. sitting in the cottage that evening, the anxiety had certainly eased alot, my body, well was being my body pots/eds and all. i just wanted to go home. the surroundings felt strange and i didnt want to be there. i didnt know why. rosy was a comfort, the place was adorable, yet i wanted to be home. because i didnt feel anxious, because my health symptoms werent in excess, i rode it through. very strange feeling indeed.

next morning after a distrupted sleep, i felt better. i felt different. i didnt want to go home, anxiety was pretty much nil, so we went to explore the countryside. rosy was no trouble at all, perfect dog. this was her first holiday away with us. i made sure i ate regular meals, as that has always been a problem, most of the time i wasnt hungry at all. yet i had small meals. i was fine, i enjoyed the break no end. the village, which was three miles from the sea was lovely. i think my body could take to village life. so slow, right near nature, understandable people. i know, i know it was just a break, living there would be a different ball game, but my body tells me country/village life would suit.

coming home was a bit hectic, when we arrived on the m25 we sat in a tailback for an hour and a half.

yet when we neared home rosy seemed to thank us for the break

norfolk, holt

2011-07-08T21:05:00.000+01:00

i conquered!!!! four days, three nights. lots of pictures. first time ive been away since eds/pots struck. positive experience. will post more on anxiety, pictures, bag giveaway, traffic jams, rain tomorrow.

something else booked - something about anxiety

2011-07-04T15:51:00.000+01:00

norfolk has been booked, three nights from tomorrow. i hope not another one to be cancelled. i was talking to the therapist today, she said i now need to look at life from a different perspective. i have a fluctuating illness (which im still in denial about, which i havent accepted!), and i need to plan accordingly. so if im ill and cannot go, so be it, be kind to myself, urgh whats that!!! seriously she made sense, i need to adopt a different approach.

also she mentioned something about anxiety which felt a bit strange and new, she said ' the body remembers'. for years ive been looking at anxiety from an 'in your head' kind of way. she however, said when you have been in an anxious situation that your body will act in the normal symptom way, when the incident or similiar incident happens your body will react in the same way. for so many years ive been told its the other way round. interesting.

if all is well i will draw the names for the leaf bag on saturday. anyone else like to be entered, please leave your name on the bag post. thanks. x

i think i might jinx myself saying this..........

2011-07-02T20:41:00.000+01:00

so if i say it in a whisper i might just get away with it.

i found a small cottage for rent next week in norfolk. monday morning mum is going to phone up to see if we could rent for three nights next week. is this going to be another cancelled appointment? i dont know, but if i dont try i wont know.

been a bit breathless today, lowered my beta blocker, take 20mg in the morning 20mg at night. now for a potsie thats quite a low dose but i cant tolerate anything higher. so ive been taking 10mg in the morning thinking that would allow my pulse to stay above 37bpm. this morning i felt much the same, chest pain, breathless, lightheaded, took my pulse it was 40bpm. i was hoping it would at least be in the 50s.

ive always like to be in control of things to some extent. right from when i was a child, i liked things going to plan. i can see why now. my health was always in a constant state of flux. never the same. so it would make sense me liking calm, planning. what a disease to have for a control freak.

hope this makes sense, fuddled brain today.

giveaway

2011-06-29T20:39:00.000+01:00

I thought about going some sort of competition.

However, I would like to do a giveaway.

Anyone of my loyal followers fancy the bag above? Leaf print on the outside, tangerine lining.

Pop a comment in the box, then a week today I will put the names into a hat (im hoping there will be names!) and pick an owner of the bag out.

good luck. xxxxx

40% of people with m.e really have P.O.T.S

2011-06-28T19:49:00.003+01:00

what a surprise!

http://www.telegraph.co.uk/health/8596450/How-gravity-can-knock-you-sideways.html

so what happened?

2011-06-22T19:03:00.000+01:00

indeedy.

i havent come to terms with having a fluctuating condition at all. i thought that i had. the therapist that i see, a few weeks ago said she thought i had PTSD. i didnt think so. maybe shes right. i dont know.

my body has a mind of its own. any infection, change of weather, change of position for goodness sake, seems to set off a barrage of senseless warped symptoms.

come saturday morning, i was pleased that i had paced myself through the previous two weeks. i arrived two miles from the tunnel, feeling urgh, i didnt know whether some stress had set things off. i was hot, with chest pains, couldnt breathe properly,(didnt help having a heart rate of 41), i tipped over into panic. what if i couldnt eat when i was away? my body needs regular nourishment now. no leaving it for days and whizzing through holidays on adrenalin. a decision later, me and mum turned about and came home via brighton. i didnt want to go home defeated. terribly upset. we eventually returned. with packed bags.

i felt useless, for the first time i felt that my body wasnt working with me. i couldnt push it too an extreme. no more. i cried. i shouldnt of because i felt ill the next day.

The plan.

next wednesday a day trip to france is planned. nothing is booked (luckily euro tunnel has extended the trip for a year), we just turn up and go if im ok.

also trying to go away for three or four days somewhere in england in a few weeks time.

thanks for all the comments, very kind of you all, will reply when my head is a bit straighter. xxxx

mission impossible

2011-06-19T17:11:00.000+01:00

what can i say, theres always september.

two years ago.......

2011-06-17T21:46:00.000+01:00

two years and a bit ago i came home from hospital. i couldnt sit up for more than ten minutes at a time, somehow for five months i lay in bed unable to do much at all. i had structure to the day. i would have breakfast in the morning,rest, lunch,rest, evening time came i was able to wash myself in bed, than a while later dinner. i couldnt have the t.v or radio on, a few months in i was able to use the internet for a bit. went out for appointments, had to ring ahead so they could arrange somewhere for me to lie down. then came the car trips, with my feet up on the dash board, chair reclinded on pillow (which i still do most of the time now).

i didnt know what lay ahead. took a day at a time, an hour at a time. the doctors were optomistic, they informed me if the cause for POTS could be found and treated then i may live a life without it.

then i was diagnosed with ehlers danlos. bittersweet. they found the cause, however both conditions could only be treated with medication and not cured.

more hospital appointments later, more than i care to mention, im here. stuck with this damn illness. trapped in this body, that wont get better anytime soon.

tomorrow morning (yep i know two days late) im attempting to travel a few miles, ok a good few miles. i dont know whether or not i will make it. will my body hold up? i dont know. if i dont go then what? what have i got to look forward too? a decrepid body that dictates to me what it wants.

keep your fingers crossed for me people. please. xxxxxx

sitting outside the post office........

2011-06-14T19:46:00.001+01:00

was in the next town to us, whilst mum went into the post office to mail a parcel for me, rosy and i waiting outside.

a lady passed me on a scooter, stopped reversed, she smiled and we began talking. she asked what put me in the wheelchair, my usual sentence came out, a genetic disease. ah what one do you mind me asking, nope. ehlers danlos and pots. she smiled, youve seen prof g then, yep. i have it too. so does my six children.

whats the chances of that. my first encounter with a real life ed-ers!!! we swapped stories, laughed, then she dug into her bag got a piece of paper, wrote her address and telephone number down and told me to contact her. couldnt stop smiling. she also said her youngest has just applied to medical school and got in. so a future dr with eds. another bonus.

health insurance

2011-06-07T20:07:00.002+01:00

on behalf of richard branson i have purcahsed my health insurance for a grand total of £70.00. i should be going next thursday. nervy nervous.

tablets
med bag
clothes
bikini
money
laptop
letters from consultant
camera

must remember to put blood pressure machine in, just remembered. tea bags too.

like everyone on blogger, having probs

2011-06-01T21:42:00.002+01:00

yep me too, been reading everyones blogs, tried to post comments on mine to no avail. when i try to leave messages on others have to be anon, that wont do!!! will wait till the cyberstorm has passed.

have purchased a new laptop, at last.

two weeks today im taking a little jaunt. oh dear hope im fit enough.

2011-05-25T09:44:00.003+01:00

moochy, mopey mood.

2011-05-24T18:32:00.003+01:00

mmmmm. title says it all really.

been without lap-top now for nearly a month i think. i miss it most when lying in bed feeling rough, i used to look at things on-line, lots of reading. now i have to sit up which is uncomfortable at the best of times, so my time is limited.

a couple of weeks to go before the holiday. theres me in croydon on saturday ( i think it was saturday) buying medical stuff, while mum is looking at the swimming costumes. is life fair?!

dropped some of the last pieces of at charleston on sunday, took some pictures of charleston which are so pretty so will post them soon.

thinking about having a competition soon, for all the regulars that have endured some of my posts! nothing fancy but the prize will consist of chocolate! will also post anywhere in the world to, not just to us blighters over here.

hope everyone is well. rosy has calmed down now, no diva attitudes, well accept some barking.

take care. x

oh rosy

2011-05-14T19:29:00.002+01:00

today i attend Dog Watch at Merton. Really a fun day out, nothing serious, some dog stalls and a competition for mutts. i had to enter rosy. they asked me a little about her, told them how loyal she was.
she won best female mutt in merton!!! proud fur mummy today.

only in brighton

2011-05-10T17:46:00.000+01:00

i said no,no,no

2011-04-30T18:26:00.004+01:00

firstly a cute picture of some baby mallards, couldnt resist taking some snaps at MH today.

appt how did it go; got there in time, even found a parking space not too far from UCH. waited 45 minutes, didnt mind, i was seeing the top bloke prof g. was in the little windowless NHS consultation room for 30 minutes. Within that time we the prof examined my painful neck,wrists,asked me a number of questions, brought up on screen our private appt last year, a swiftly asked me would i like to go to rehab.

mmmmmmmm.

stanmore, north london, three weeks, due to the fact that EDS is a life-long condition, he wants me to learn pain management, physio so i can practise this at home. i nervously smiled, i found myself nodding before i could say anything, damn my pleasing side. i need pre-assessment to see whether im suitable, to see if funding will be given.

has anyone had this treatment? any tips or advice? my rational brain says its a good idea, i dont want to be on morphine at my age. am i a brave little thing, i will have to see, take it in my stride, one step at a time. rehab, i cant say no,no,no.

feeling pretty sick at the moment, hot, crappy, my ribs are moving about, strange feeling.

something in the air........

2011-04-25T21:44:00.003+01:00

reading others blogs, seems like a big lull is going on, include me in that. due to the lap-top fizzing out, it means that i have to use the upright computer!!! not a good choice for us posturally challenged people. that and an achey, good for nothing body, well you get the picture. not tolerating this warm weather much either which is a pain, due to the summer and a possible holiday coming along.

tomorrow i have an appt with prof g, in euston, argh. having to leave two hours, yes two hours before hand just to get into central london, stupid traffic, but then im part of the traffic too. hoping to get some advice on pain killers, joint problems etc.

i dont know.

better

2011-04-20T19:34:00.002+01:00

feeling better now. pretty sure it was some kind of virus. that ontop of POTS is a nightmare. i really should appreciate the good days more. for four and a half days i felt dreadful, neverending. ive picked up.

my laptop is kaput. since ive been out of hospital i relied on it for entertainment. i think too much. now i have to pad along the landing to my dads dinky office, plonk myself on a chair with my feet up on the table to ease my pots (lucky for me im hypermobile!) then time limit myself. upright positions arent good for me. never mind.

the deer picture was taken at richmond park. i was well enough to travel there on sunday. what a lovely day. ive never been before. the deer wandering around amongst the cars and people. which at first was a little strange, then after awhile you get used to it. i did lose my camera on sunday, which kind of topped my week off! however after retracing my route, luckily it lay on the grass verge. thank goodness. hope you like the photo.

hibernate till its all better.

2011-04-15T13:36:00.004+01:00

this little disease called POTS. please leave me alone.

i do moan about the meds that i take, they keep me on an even keel pots wise, yet 14 tablets a day seems a little excessive for a soon to be 37 year old. i will not moan again.

yesterday i had an appt with a bowel dr. only local. he said that my bowel flops to one side when i go! however till i get the eds appt and pots appt over with he will then see whats to be done. fine no problem ive put up with this for so long.

yet i think i picked up some sort of virus, before the appt. was in alot of bowel pain, not hungry, not my usual potsie self.

last night i woke up at 1.30am, not breathing properly, feeling like there was an accordian in my head, clutching onto the walls to get to the loo. ive forgot what these symptoms were like. took me back two years just before i was diagnosed. i opened the window because i was so hot. even rosy knew something was up because she was alert and really didnt want to be on my bed.

woke this morning, im hoping this will pass. im simply not with it. the last couple of weeks have been a struggle symptom wise.

times like this when im propped up in bed, that i think why? i was going to take a pic, although i didnt want to scare anyone!!!

liberty fabric

2011-04-07T20:07:00.002+01:00

the treat.

after completing the list, heres the reward. a metre of liberty fabric. when i went into libertys back in january (i think) i went to the cheaper end, £10 per metre, i was thinking that i could buy two metres instead of the usual one. then i thought nope, im going to buy what i like because this is my 'job well done' treat. i wouldnt usually spend this much on fabric. but hey i like it. now i have to think what im going to make. oh and rosy had to get in on the act!

perfect afternoon

2011-04-06T20:16:00.002+01:00

one of my favourite local places is mh. i expect you all know this by now the way i rave on about it. its a national trust garden, with plenty of wildlife, pretty buildings and bridge, and lots of history.

so what better day to go than today. yesterday i rested up, nausea was low yesterday because of the boring-ness of the day. i have choices in life. do i stay in, laying flat all day with less symptoms than normal, or do i remain up-right for a few hours and experience crap symptoms? mmmmmm. i went out today.

we arrived around 11.30am, just as i opened the car door, we were greeted by y, a friendly artist that has her studio in the grounds. y, makes you feel cheerful, uplifted, happy. after a walk around the park, past the above picture, we must of spoke to four or five people enjoying the sun. dogs seem to attract comments, so rosy laps up the attention.

having a headache on waking i knew that a good strong dose of tea may help with the pain. however i think the world and his wife was out to bask in the sunshine today, we shared a table in the cafe with a lady who i have met before with a pretty little jack russell called snowy. then y, came to join us, followed by another lady with a gorgeous dog who i made a doggie coat for in the winter. the gardener popped over to say hello. after an hour my eyes started to blur, headached, neck was oh so painful, nausea came back, but hey i wasnt about to pace myself and go sit in the car.

three hours had passed, a cheese and pickle sandwich had been eaten, my arms had gone slightly red in the sun, tea was drunk, dogs were so good sitting in the shade, we all said our goodbyes, till next time, home was calling.

days like these make living with this illness worth while. interesting conversations, pasts discussed, amazing, sad, stories told. even if now im knackered,unwell, at least i had a good afternoon.

rare species found in croydon.

2011-04-01T17:44:00.003+01:00

a hybrid mix. spotted at valley park, croydon this morning. unhappy at being photographed. wonder if the creature will be spotted again!!!!

promise one last post on plimsolls

2011-03-24T09:19:00.002Z

this was rosy yesterday morning. i spent part of the morning at gatwick airport. dad flew off to france for two days to see the work he is about to take on. sitting near to were they check in i was feeling pretty unwell, so i thought i was feeling anxiety. i checked my pulse, 48bpm. mmmm. went and had a cuppa, i felt better. the lights were a bit overwhelming, nearly lost the car on the way back to the carpark. was charged £8.30 for 1hr-2hrs parking, now tell me thats not a rip-off. home i had two hours of sleep. then off to a local park. so enjoyed the sunshine. i know i shouldnt do it but i let the sun bask on my face for around five minutes. i did feel a bit tachy but hey.
my other pair of red shoes, a newish pair of converse boots. i bought my first red pair when i was a teenager, i had to eventually throw them away a few years ago because they were holey.

red is becoming a bit of a theme. in the week i bought a red lamp shade for my bedroom. rosy had a red fleece. red shoes. red dog collar. i find im noticing things tinted with red. maybe i will have my own red front door one day!

not red, but still happy

2011-03-22T19:45:00.002Z

Now the Spring is here, I've been able to temporarily re-house my furry boots. A bright pair of Cath Kidston plimsolls are covering my tootsies today

1989, red shoes,feeling crap.

2011-03-19T18:35:00.003Z

Bright sunshiny day. I decided instead of wearing out my toasty warm boots I would wear a cheery red pair of shoes out. Circa 1989. I can remember buying these shoes in the Kings Road, a little shoe shop called Shelleys. I so wanted them at the age of 15 I pleaded with my mum. She said if I paid half then I could have them. So I stumped up £20.00, true to her word she matched me. 22 years later I have them stored away in there original box, with receipt (sad act that I am).

I've been suffering with breathlessness. Urgh, if there's one symptom I can't abide it's feeling breathless. Maybe I'm overdoing things!!! Also had the nausea come and go. Oh to end on a positive, (fluttery stomach) my dad has got the job in the South of France, arghhhhhh.

went to the dentist

2011-03-15T18:12:00.002Z

went to the dentist this morning. not much anxiety at all. my teeth are in good condition, despite not going for 18 years! im due to have two fillings, hopefully white fillings. no extractions, wisdoms are ok, what a relief. i was even asked questions about ehlers danlos, the dentist remembers doing a segment on it at dentist school.

although the top set are a little overcrowded due to my high palate, hes not going to do anything about it. also needs a clean, im so pleased. the chair was lowered flat, which i knew would make me woozy, next time i will mention this. i was slowly inclinded, i could feel the rush to my head, sat still for a bit and was ok. no wonder years back i thought i had anxiety when this happened, very similiar.

have been very foggy of late. not sure why.

aw mallard

2011-03-11T21:19:00.000Z

take a look at the mallard, aw.

its official im confused!!!

2011-03-09T19:21:00.002Z

the first neuro told me, that i suffer from confusion!!!

so its official 'im confused'.

when i was happy

2011-03-05T18:14:00.002Z

taken when i had just turned sixteen. little did i know that weeks afterwards i would be shot down with pots, and not even know it. i was at school revising at the time, my friends had a great laugh, no set times to do things, just whip the books out and joke around. took me two years to recover properly. i can remember feeling so sick, not knowing what was wrong, stomach problems mostly. the dr would give me bottle after bottle of maalox, a suspension for acid indigestion. i would willing glug back the chalky mixture. starting my a'levels was a major upheaval feeling so dreadful. i would take lunch to school, not being able to eat it i would swig on the maalox, the white mixture would cake around my mouth. sick to my stomach i would attend class and couldnt wait to go home. i would black out on the way home. the dr at the time would say, stop worrying after he had done a test for glandular fever and that came back negative. i would get know further help. i know its the same story over for a lot of pots/ehlers patients. sad, so sad.

couldnt resist showing you this picture.

2011-03-04T21:49:00.000Z

nausea + robins

2011-03-03T17:50:00.002Z

nausea is hanging around. arghhh! my eyes feel like they are being twisted around.

went to morden hall, sat outside, the freezing air helped with my headache. a friendly little robin decided to perch itself on our table, even rosy was mesmerised. the robin took a piece of cake off of my hand. the cake thats made of brown bread and soaked in tea? foggy brain cant think of the name of it, my mum loves it.

2011-03-02T21:10:00.002Z

send a prayer for henry. x

payback

2011-02-26T20:57:00.002Z

arrrrgh. a little pleasant trip. two days of wonky, out of kilter breathing. is it worth it? i cant tolerate alot of symptoms over these past two years ive had to. but breathing, its not on the top of my list of favourites!

its payback time.

a few little pictures

2011-02-25T16:43:00.003Z

we arrived at claridges right on time, so straight into the afternoon tea room! ive never been before and the afternoon was a gift from a client of my dads. i felt pretty unwell in the morning, so i had a rest for an hour, which eased the nausea, ten years ago i would of blamed my nerves. everything i blamed on my anxiety. yet today i felt dreadful, if not more so than usual compared to years back, however i knew it was because of a physical problem. i had a little test later on which would confirm this.

sandwiches came first which we welcome because i was hungry, they were light and very tiny, and because of an advanced call, vegetarian. i managed a quarter of a glass of champagne before my body told me to stop. which i duly did. i had a few cups of tea which we needed, then one chocolate and coffee cake, very yum, delicious, a tiny scone, tasted the clotted cream, yet i couldnt stomach it so i had it dry. and more tea. i started to feel sick, i think have a rich sugar treat did it. usually i would of by now thought my nerves had kicked in as i was hot. yet the room was hot, i had two jumpers on, so hey i was hot, not nervous. i discreetly took my pulse by placing my hand on my neck took a quick peak of my watch, 64bpm. would that suggest anxiety? i dont think so. i need to be more mindful of things in the future. test the waters. realise the pots is responsible for alot of my ills. i know i have a long way to go. yet this is a start.
lovely light above my head
chocolate, mmmmm.

oh and there was a very embarrassed dad moment. he noticed there was an royal sitting behind me, grabbed my camera and snapped. my cheeks went a rosy red, dad please stop it. why are they soooooo embarrassing. i should say ex royal. take a look at the first picture with my mug-shot in, to the right of me is a certain red-headed lady, yes its her. by coincidence dads picture came out a little blurry anyway, so that will teach him!

a big tick

2011-02-24T20:13:00.000Z

more pictures to follow, exhausted.

dentist booked, afternoon tea awaits.

2011-02-23T17:24:00.002Z

yep in i hadnt been to the dentist since september 93. wow. i went in today and book for mid march when i have less appts. not even nervous. maybe on the day though, had to fill out a health questionnaire, i should be ok.

afternoon tea tomorrow, im hoping to take pictures. feeling pretty unwell at the moment, have a plan b ready. i will sit in car if i cant manage the whole thing. im determined to go. chocolate cake, mmmmmmm.

bp

2011-02-22T17:58:00.002Z

no not the garage.

ive been fitted with a blood pressure machine for the day. so every twenty minutes or so i get a brrrrrrrrrr, a tightening around my upper arm, then a sssshhhhhhhhh. i only have to tolerate this for 24hrs.

now a whinge, i will miss my bath. lovely warm soaks, with the occasional blast of hot water, (i can lay back in the bath, when the water gets cold my big old, big toe can switch the quarter turn taps on, no need for a head spin to get up) even if i do get palps, my joints are so easily pleased. but hey its on night.

tea, i also dislike appts when i cant have a cuppa first thing. although this was not one of them thank goodness. as always i forget to read the instructions that accompany the appt letter. why dont i read things properly?

i saw a tv.programme in the week, or maybe at the weekend, pretty sure now i think of it, sunday. where a person in england goes abroad and practises the job they do here there. this week was a bus driver that went to the Philippines, easy watching so i thought. until you saw the poor people, really poor people, rooting through fast food bin bags, taking out the left over chicken pieces re-cooking them and selling them on. shocked, the guy cried. i was stunned. we arent poor, so you cant get the latest gadget, car, house, just think you aint chomping on others left overs. somethings i shouldnt watch, i get flashbacks in my brain.

these boots were made for walking........

2011-02-20T18:46:00.003Z

four years ago i purchased these new walking boots. i was trying to encourage myself out of pain. mind over matter, my joints werent really hurting, i didnt really get out of breathe so easily, it was all in my head, so a brand new pair of boots would help no?
well no. my old trusties, over ten years old, a little bit thread bear, many miles they have walked.

this weekend ive put my new boots up for sale. sitting in the cupboard, i thought someone else might get some road miles, or country miles out of them. im not sad, i always have my trusties to look at.

i need to make something

2011-02-19T19:53:00.002Z

im lucky that i have the use of a huge dining table, so the sewing machine is permanently left out. i have a couple of dogs coats left to make for rosy, but im bored and i want to make something else. i made myself the bag last week, i will take a few pictures of and put up.

i love taking something out with me, so if im left in the car for a while i dip into my bag, and start stitching if my eyes will allow. i have a little stash of material, wool, felt, sequins, buttons, zips, wadding, etc just no brain whatsoever!

wanna see what my dodgy collagen looks like?

2011-02-17T20:44:00.003Z

well this is whats causing all my problems, well not all. i received my testing results back. pretty sure its type 3, yet they are continuing to test for a year for the final results.

can i pick all your potsies brains?

2011-02-16T09:29:00.002Z

next week i maybe going out for afternoon tea, with champagne. pictures will follow i promise.

i have asked the pharmacist on the concoction of meds that im on will it be ok to have a glass of champagne? they kind of said a few sips would do.

i have never been a drinker, however i want to on this occasion.

im on the usual meds, midodrine,beta blockers,paroxetine,domperidone,fludrocortisone. would one glass be ok? i know we are all different in how we tolerate things, i would muchly appreciate any of you potsies out there responses.

i thought that i would do something really clever....

2011-02-15T18:05:00.003Z

on sunday.

I was feeling pretty unwell on Sunday morning. Flare up of symptoms. Instead of staying in bed I thought this was the ideal opportunity to take a trip to Brighton. Oh yes, daft me indeedy. My logic was, if I'm going to France, then I most like will experience the full force of p.o.t.s somewhere along the trip. I really wanted to see how I would cope with the symptoms, I mean an hours trip isn't the same as a two day road trip, nevertheless its a start. Wasn't so bad, yeah i felt unwell but hey thats life with a crap illness. Yesterday I had to rise at 6am, to attend the psycho-d therpay.

Well today my ambitious side has well and truly caught up with me. I feel like poo. Short of breath, nauseous, extremely weak, not really with it. It just aint fair.

new coat

2011-02-14T19:48:00.001Z

stop...

2011-02-12T20:48:00.002Z

i will stop myself whinging and moaning. stop, im even getting on my own nerves now.

on a more helpful note, no; 17 on the list. nearly to a ta-dah moment from the fabric freak. how many more to go before i can open my little present to myself. erm,,,,,,8. then you can see a lovely piece of liberty material.

had a headache so what did i do, went on the sewing machine, mad it worse, hurt my neck. for godness sake women, shut up! i promise no more.

hey

2011-02-11T16:54:00.003Z

i cant start another post with im exhausted and tired. (i am)

ive had a blocked ear for nearly a week now, which is putting me in a grumpy mood. along with the ear ive extremely loud tinnitus. went to the drs this morning after a weeks worth of ear drops, they informed me i have to wait another week before they will syringe. arghhhhhhh!

so in the meantime im going crazy.

finished Basils dog coat, a cute fluffy mutt that i know. i just have to present it too him.

trying to stay optimistic when all i want to do is chop my ear off.

continuing with session three of psycho-d therapy which is calmly helping.

perhaps an axe would do the job better.

nothing planned for the weekend i dont think.

arghhhh.

rosys red coat is finished will take a picture and post. starting on another, the last i think for her, kind of a deck chair fabric, cheery and bright.

will go before my mood takes over. pleasant weekend to allx

thinking today

2011-02-05T17:58:00.003Z

i awoke this morning with a headache. not unusal, yet when you havent suffered with them for a while the pain takes a little time to get used to again. along with joint pain which doesnt leave me, just travels around the body on a daily basis wondering where to sit for the day. my neck always houses pain.

as i lay here this afternoon, i thought when will i get better?. im exhausted at present, i know, my own fault, you cant expect to do lovely things and not have no pay back. well the simple answer is it wont go away. im stuck with this permanent fog, this pain that travels. im stuck. i dont know how to come to some arrangement with these little buggers. how can i make peace with myself?

just a soppy saturday afternoon. with not enough diversion, because the symptoms have taken over. no distraction. to tired. if i was a horse...

thumbs up to ruby

2011-02-04T16:45:00.001Z

a thoroughly interesting,thought provoking night. wish she could of gone on for a bit longer. however now i am tired, could sleep for two weeks.

10 more challenges to go...

2011-02-01T19:38:00.001Z

mission accomplished

2011-01-30T09:39:00.002Z

extremely tired and achey now. i clapped too much, way too much. my neck and arm are paying for it now!

werent allowed to take any pictures of the actors performing which would of been pretty good. jack and the beanstalk. at first, the story was a little slow, then with songs and humour things speeded up a little. i think i need to sleep for a week now. x

eekkkkkk!!!!!!

2011-01-29T17:20:00.002Z

a member of the masonic lodge is in an amateur production tonight, and im going! im feeling a bit nauseous,hot,generally urgh, but i think thats my pots playing up, also extremely achey due to this cold weather that has decided to spring itself on us. never mind, if i go i will tell all.x

slow news day

2011-01-27T21:21:00.000Z

next thursday have tickets to see ruby wax

2011-01-26T19:46:00.002Z

when i attended the eating disorders course back in 2008, they asked me to join an online group affiliated to the health hospital. i agreed because i didnt want to be rude! i get the odd email now, really just saying whats going on at the hospital, fetes, etc.

two days ago i got an email saying that ruby wax is performing there on two separate occasions next week and any members can get tickets for free, before taking the show into the west end. its called losing it, about her problems with mental health issues.

i mulled it over, thought maybe it would be too much. i spoke to mum about it and she said get the tickets. so i mailed the organiser for two tickets, and wulla, two reserved for next week.

im not even thinking about this at present. hope i will be ok being in the hall with others, hope it isnt hot, hope im well. the list is endless. i have been spontaneous!!!

another day......another

2011-01-25T13:51:00.000Z

barium meal!