Wednesday, 28 July 2010

wendsday again

went to the new riding school today.
slowly starting to get used to everything there,though not ready for riding there yet.

walked around the indoor arena with staff,the riding instructor and ozzy,it was very busy with kids in the joined cafe as its unfortunately the school holidays.
ordered the libra bareback pad today,to use whilst riding ozzy.

am not seizuring badly every day anymore,as the anti bs stopped the illness that had probably been helping to make them worse.

have also just ordered some PECS software,its nearly impossible to get hold of the board maker disc as its shared out between so many people [even though it also needs installing board maker wont work without a disc in,probably anti piracy thing-not like most people who have it are likely to be sticking it on bit torrent any time soon].

also on plans,is some new youtube videos.....
the speech therapist came recently, and mentioned she had seen the old makaton video that had made years ago with support staff-and have been encouraged on to make more,plus some on PECS as well [thanks if are reading this].
so am going to get back into it again,and have got good ideas for the videos.

hopefully very soon,am getting a webcam/CCTV-IP? camera setup in lotties mannor at the farm,so will be able to watch her from anywhere in a non stalker way,it will allow us to see how many boyfriends she has got stealing her food as well.
woud be awesome if we coud have one in all the main animal areas, to see what they get up to when people arent there,as they all go crazy when people arrive.

finally,am hoping to get a specialist bed,as current one is knackered and not safe to use,was told the ones we had been looking at [kinderkeys padded ones] woud use up to much of savings,so we are looking into hopefully getting something like it through OT as that is where all of own wall padding originally came through.

Thursday, 15 July 2010

piss,doctors and freecycle

the gp came today,wasnt a great experience,as was starting to get quite out of control from yet another day of new mostly unplanned faces about, luckily had beaten up the table and not the doctor or staff,as woud rather knock self out than harm anyone else.

they tested a piss sample there and then,which didnt show anything [other than it being piss],and at the end of it,they said the signs are deep dental infection which can cause all the symptoms am having, so have been prescribed amoxycilin liquid [that yellowy banana stuff].

nearly made the mistake of drinking the piss as it was in one of the disposeable cups that drink redbull in,and it looks exactly like redbull which had been drinking at the time,no loss if had done,probably woud have been spat all over someone else,needed something to laugh at today.
afterwards was ticcing very badly-the usual,normal stuff.

not been as bad tonight as was last night,but have had the fever and sickness on/off all day,think might have had abscense seizures as well.

was mums birthday this week,and had been thinking about getting her something off freecycle,as she will whinge about anything that buy not been good enough,have bought her hugo boss perfume before and she complained about it [though doesnt stop her wearing it].

have been thinking of whether to put up some wanted item posts on freecycle, an old large enough bucket-shes always wanted a downstairs toilet,so nows her chance? might just buy her one from the worst shop possible to give her something real to complain about this time,and cant forget some cheapo sandpaper like toilet roll either,but she already buys that so may just actually buy her sand paper.

she is actually serious about that downstairs toilet,might just dig a hole in the back garden,stick a wendy house over the top [that have gotten from freecycle],and itll be like old times for her [her house,as a child had outside toilets].

Wednesday, 14 July 2010

wendsday,yes its a shit title

had a better day today-no full seizures at least,though have got a fever and feel knackered all the time.

this morning had finally gone to start the part-changeover to the new riding school,had had a few meltdowns already ontop of feeling not well so was trying hardest not to show it as otherwise woud not have been allowed out.
did get to go out,but it wasnt mostly a good experience-nothing to do with the riding school,who are very understanding and willing to support in any way,nothing to do with the jasmine cob will be riding most of the time [called ozzy],and nothing to do with support staff it was because was not able to do usual routine which is starbucks afterwards,they said it was to much of a risk to be out for that long with the way the seizures are right now,as soon as got back just went into own shower/toilet room and smashed head off the wall to knock self out-as was going to end up triggered by the building crap in head about it.

have not been out since wendsday last week because of not being well or had a starbucks since then,and have been getting low blood sugar [frapachinos are full of sugar was told once before by a dieting staff] so one of these woud of helped,though might have just been desperate to use that as an excuse anyway.

the horsey visit...
his name is ozzy,he is the friendliest horse? pony? [coudnt work out which but he is a cob] around-he is another jasmine cob,which makes it a lot easier in getting used to him-here is a photo of him,he was wanting to see the stable cat as well,which was what had bent down for:

shannon,the horse was supposed to be riding,is to be used as backup for when ozzy is ill/in use,though woudnt be able to just swap like that so hope it doesnt happen.

besides all of that,have broke part of the laptop again,one of the boys was set off right next to self,which in turn set self off-so must have kicked out from the pain at the nearest thing/laptop.
bloody tracking pad and one of the mouse buttons is knackered again,
is lucky it has lasted this long,through this much damage as well, as was told the hard drive is under the tracking pad so can easily make it not work.
will be getting it fixed as soon as possible,at least its useable,just abit of buggering about to get do it.
for some reason it wont drag down,or to the sides,but will do all the other movement.
the last time it was broken it was that bit that got damaged,these things shoud come with protective cases.

Tuesday, 13 July 2010

same old crap

feeling very bad at the moment.
since last week,the paramedics have been called out most days,due to having multiple worsening seizures-they stopped without needing to go to hospital to sort them out which is a huge bonus,but have been told its heading for status epilepticus,unless get meds sorted as soon as possible,and GP wont add on anti epileptic meds,apart from prescribing benzos for emergencies.

paramedics had told staff to phone as soon as the seizure happens, so am unconcious and able to be brought into hospital,as otherwise will refuse to go in,but luckily had come around by the time they got here.
the medics today were very experienced in autistic adults and children,and were probably the most understanding paramedics have ever known.

one of them is dropping off a print out photo of her fluffy cat [like biscuit different colour],and she really understood the issues was having ,but was fucked up to badly react anyway.

they said blood sugar level[?] was low,and temperature was high,and think might have an illness which is what is making seizures worse,so GP is finally coming out-they had to force him.

am not riding tomorow,its the introducing to the new riding school thats going to be happening [slowly],will be first time out since last wendsday mostly because of the seizures,cant wait to get out.

Saturday, 10 July 2010

medication changing

due to being helped to see what am doing to self by not taking ensures,as well as the warnings off paramedics that one day soon will wake up in hospital after a seizure [am extremely hospital phobic for sensory,change,new stuff and history-reasons],have slowly started to take them again [since wendsday?] anyway,today,boots brought the new box of them around and coud not believe it-after having built up some strength with them-was told that the company has changed the bottle,so it was put into an old ensure bottle.
all was well soon enough.
then tasted it,never woud have thought ensure coud taste any worse than it does already [a sick strong yogurt taste that stays after in the same way fish oil capsules do],but they have gone one better.
it tastes fucking disgusting!
puked it back up,showed staff-tried to get them to try it as they thought just did not want to take them again,but they woudnt try it as its classed as medication.

so after the long time have spent not eating anything,or taking ensure-getting the strength to start back on the liquid-and the company changes them?

why do medical companies do this?
am fed up of them changing stuff,it might not mean anything to people not like self,but to self it hits faster than anything and makes all the difference between having them and having some shit symptoms from not having them.

Thursday, 8 July 2010

new riding school stuff again

officially start visiting from next week,but not looking forward to it and am denieing it in head.

the plan is will be spending time for some lessons with staff,shannon in the indoor arena,and then the instructor until have got them both and the place into routine,before doing any actual riding.

they do not have bareback pads,but-have been allowed to buy one,which is awesome as had thought theyd say its against insurance.
am either buying the sheep skin lammfelle one jas uses-

or,the libra:

hope to get more visits in before the proper visit.

time travel with seizures

have worked this one out-the past few weeks feel like theyve disapeared and am back at mums at the weekend again,due to the amount of seizures am having,so time travel really exists or so it seems.

during riding this week,was having a long pattern of abscence seizures throughout the whole lesson,the instructor [who is one of the people am led by] got a steel toe cap up his bum as he bent down to put a mini block jump up with jasmine still plodding on-he didnt realise had just skipped time.
have been having bad ones every day throughout the day very recently,and yesterday they called an ambulance as GP does not do out of hours for some reason,we were expecting some emergency eppie pills whilst waiting for the neuro appointment to come up to sort meds out,as already get prescribed diazepam for noise anyway but the gp was rubbish and the paramedics just tried to encourage to go to hospital with them,was out of it for most of it,as if was on a different speed to everyone else,didnt even notice when they stuck the temperature thingy in ear-which makes a loud beep-that woud usually trigger a meltdown if was in a normal state.

they then said they think part of the reason the seizures have got worse,is because am not on any food at all,and have been refusing the ensures for a long while,they said that liquid food like ensure and solid food helps the medication go through body,or something like that-and without any type of food at all,its stopping the medication from working.
have to admit,they coud be telling the truth,and not just trying to encourage taking the ensures like everyone else,but have noticed recently am getting more TN attacks [a fault in the face nerve]-which is part of the reason am on tegretol.
so have managaed to have some of a bottle of ensure last night,had some of this mornings and evenings,and a little of tonights.

they also said am not drinking enough,though that isnt controlled- when feeling the before-seizure signs do not like to drink.

was completely knackered today,and worn out and for the first time ever? had lay in bed during the day-have never done this usually [unless have been severely sick but cant remember last time] as lying in bed is night time routine for self.
had a few seizures today-but only the bad one tonight-just after had had night time medication-this one has left head dented,and it took a while to unstiffen arms and legs,hand is still difficult to use now,and it feels like whiplash in neck,matress has been moved to floor since yesterday so was lucky.

the gp had been phoned today,as he was supposed to come out today,but they said they cannot do anything until the neuro appointment,apart from prescribe supositories of diazepam,fuck that-have had them when younger and woudnt wish them on anyone.

so hoping the little ensure will help cut them down a bit at least,and hope wont be as knackered tomorrow,or seizuring so can at least go out,dont think had cared less about it today with the wya was feeling though.