At the very end of last year we were put into groups for our first project this year, because the last group I was in didn't really understand or care to, want to help me and be nice about it, I discussed it with my (lovely) mentor and she suggested that each time I have a new group we should have a meeting - with teachers as mediators.
At the start of this school yeat I did just that; I organised a group meeting. I felt it was useless. Everyone knew we were there just for me, the teachers tried to make it a universal understanding meeting and one of my teachers just kept going on about herself, her experiences and pretty much everything that had nothing to the price of cheese.
One guy in my group 'S' said he had no problem with it 'just as long as you do your job then we'll be good' - which seems nice but that wasn't the case. It was all about his ideas, his grade, his way or no way; he just took over everything. He didn't really give anyone much of a chance to do what they wanted or for any of us to even discuss our ideas.
We had a mini project (which was mainly to get us working well together) unfortunately I had a hospital appointment so I arranged o do post production, foley sound recording. All I needed was a copy of the film and a list of what sound effects they particularly wanted; To this day I haven't seen the film and that was back in October 2013. Sam appointed himself the group leader, he circumvented me, made all the sound and editing decisions himself. He also excluding me from EVERY decision regarding the group and our projects; it wasn't just me but it was mostly me (if that makes sense). He took over every aspect of my jobs and a lot of the others.
When I brought it up with the teachers they knew he was taking control but they saw it as someone intent on getting a good grade when grouped with lazier students, not focused on what they want to do. In front of the teachers he came across as caring, 'just trying to help'... If I wanted help I would (probably) ask for it, I wouldn't want someone to just go ahead and do it for me, how would that help.
The filming was awful. Nobody, even the girl in my group who lived in the house we were filming at, knew or told me there was a step to get in the house! It was a kafuffal. They couldn't lift my chair (they tried even though I told them they couldn't; they built a ramp from rolled up carpet and flattened cardboard boxes... CAN YOU BELIEVE THAT?! IDIOTS! that was NEVER going to work. they made me drive up it anyway and in the end they had to use 4 people to help get me in... the carpet did help with the initial lift off the ground that they were struggling with.
Next, I wasn't able to go into the living room where they were filming because it was too small and my wheelchair takes up, about, 2-3 peoples worth of space and they already had the producer, director, editor ('S' God knows why he HAD to be in there), both cinematographers and the actor. on top of that they had all the props and furnishings needed to create the scene. I had my LSA there so, I set up the sound recording equipment, showed her how it worked and sent her in to record it.
The hallway was one long hall from the front door to the kitchen, which seemed to be the only room I could go into, the only problem - there was another step. We had all the kafuffal again. I was stranded in the kitchen until fish when my carer was coming to help take me to the toilet... and guess what, there was another step to get to that and there was no way my wheelchair and another person would get into that bathroom.
We had to get me out the house... not fun, all that jiggling around, all the sitting and I was just feeling horribly ILL. As my carer was running late, my LSA and I went looking around for a disabled bathroom. in aldershot. You'd be amazed at how much space there is between them. We found one in the park - 10 minutes away but you needed a Radar key... and NOPE, I didn't have one. so we walked 10 minutes one way down the high street with no luck finding an accessible restaurant with toilets or an accessible toilet so we stopped and went back the other way. Back to where we started we worked out that the shopping centre was 30 minutes away and they'd have to have one there.
This was not making me feel any better! An Awful day, spending most of it feeling like I'd been banished or punished to sit alone, away from everyone and unable to do my job, with awful people, awfully unaccessible places - both house and toilets and I felt faint, drained, and altogether... AWFUL!
The whole time we were walking around Aldershot I was having to be on the phone to my care agency telling them my change of area as to where they could find me.
We finally got to the shopping centre and found a disabled tilt and low and behold... it needed a Radar key. at this point I was desperate for the toilet. I thought, being as we were in a shopping centre, we'd be able to find a cleaner, manager, or security person to unlock it but no luck. I thought I'd have to make my way up to the cinema another 30 minutes away, when, as we left the centre we found Costa - AND it had a disabled accessible toilet that was open. It was A-M-A-ZING!!
After all that I had to head back to the set, I just wanted to go home!
When I got there they were filming the external shots (which saved me from having to try and get back inside), the next day we were filming in the same place so I took the producer and director aside and explained to them that I wasn't able to do my job, I could show someone (like the producer or editor - that doesn't really do much on set) how to use the equipment and I would be at the next location the day after as it was somewhere else.
'S' got involved and said 'okay' but he didn't look pleased and I heard him mumbling something about me to some of the other people but, what was I to do?? It was making me ill and I was useless. I would still do my post production duties. So they agreed.
At the new location I got the equipment back and whoever used it didn't record it properly or take notes that you're supposed to do to accompany the recordings. Plus, this new location had a step to get in! AGAIN!
Fortunately, they had random bits of wood floating around in this house's garden which we were able to use as a ramp and it worked. For once, on this project, I felt like I was doing my job and it felt so good :D
Until lunch. My carer was coming to meet me but the bathroom was upstairs so we had get me out the house - they blocked the path to the front door so I had to do the back door which had three stairs and they begrudgingly (may I point out it was already the lunch break) stopped what they were ding to help me out but they did it wrong, the wheel fell off so they had to lift and jiggle... quite painful. and I had to go on another disabled accessible toilet excursion which took 45 minutes - hard to explain that bit but I forgot I was closer to one than I thought and told my carer to meet me much further away, I didn't have my phone to call her so I had to go there.
After which I had to return to set, where they had continued without me and they thought it was too much trouble to get me back inside so I had to sit outside and do my job (was still better than the first location) with my LSA doing the stuff on the inside. I was out there for hours, in the dark and cold.
Later, they chose to reshoot some scenes and mess around - too much- with the remaining film I chose to leave as I was no longer needed and it hurts for me to sit in my chair so I prefer to only do it as much as I need to, no longer. You can guess that 'S' wasn't happy, but who cares.
After 'S' had edited the film it was my turn to do the sound edit, I was having fun, although I wanted to never, ever see that film again because I had to watch it repeatedly, little things over and over I just wanted to kill the actor but I thought I did a good job and when 'S' saw it he was actually nice, and wished me happy holidays - that was weird! - I think he realised I could do something, I wasn't just the girl in the chair that needed everything changed to suit me; but I can't say for sure.
I'm so glad I'm done with him!
*huggles* for everyone!!!
Friday 21 March 2014
Tuesday 22 October 2013
Bad Blunder of a Week
In august I had one of the worst weeks in a very LOOOOOOOONG time!!
On Monday everything seemed alright, I was ever-so slightly floopy but I'm always a bit floopy. Mummy and I decided to go to Westfield, it was one of the only cinemas still showing RED2. I only really remember the first couple minutes (if that). I went VERY floopy! It was the worst floopiness I've had. I couldn't focus, keep my eyes open, I felt very faint and I don't think I could communicate properly. I have no memory of what happened after the title sequence; I don't know how mummy got me home, what time it was, where I was or anything (and I STILL don't know!)
Tuesday, I was in bed all day, I only left my bed when I needed the loo and I had to have an awful lot of help moving, mummy and my carer (when she was there, mostly it was mummy) were almost carrying me to place me on my glider and help me on the toilet. I was falling off the loo almost every time, and I had to be held as I was being pushed on my glider. I felt so faint, I didn't know what was going on the majority of the time.
I seemed to be the same on Wednesday, I was floopy, mummy was carrying me but at some point on the glider as I was being pushed I actually fell off, I ended up with a bruise up my bum (bit funny now). It was not easy to get me up off the floor.
Thursday was the same, although I didn't fall off anything but I was still having to be carried and I was floopy and fainty. I kept going to sleep when I was in bed, I was having a lot of little naps.
Friday started off the same, I was floopy and fainty. I had a couple naps earlier in the day but late that night I went extremely light headed and dizzy and then I had severe heart palpitations, I was finding it hard to breath and I was quite worried about it all. I took my inhaler but it didn't help, my mum slpt in my bed that night to keep an eye on me (bare in mind its a single bed). I was still up at silly o'clock, I couldn't sleep with the palpitations and I didn't know what to do.
That's about all I can remember about it that week but I know it lasted longer than those 5 days. my Summer was not great. :(
*huggles* to everyone!!!
On Monday everything seemed alright, I was ever-so slightly floopy but I'm always a bit floopy. Mummy and I decided to go to Westfield, it was one of the only cinemas still showing RED2. I only really remember the first couple minutes (if that). I went VERY floopy! It was the worst floopiness I've had. I couldn't focus, keep my eyes open, I felt very faint and I don't think I could communicate properly. I have no memory of what happened after the title sequence; I don't know how mummy got me home, what time it was, where I was or anything (and I STILL don't know!)
Tuesday, I was in bed all day, I only left my bed when I needed the loo and I had to have an awful lot of help moving, mummy and my carer (when she was there, mostly it was mummy) were almost carrying me to place me on my glider and help me on the toilet. I was falling off the loo almost every time, and I had to be held as I was being pushed on my glider. I felt so faint, I didn't know what was going on the majority of the time.
I seemed to be the same on Wednesday, I was floopy, mummy was carrying me but at some point on the glider as I was being pushed I actually fell off, I ended up with a bruise up my bum (bit funny now). It was not easy to get me up off the floor.
Thursday was the same, although I didn't fall off anything but I was still having to be carried and I was floopy and fainty. I kept going to sleep when I was in bed, I was having a lot of little naps.
Friday started off the same, I was floopy and fainty. I had a couple naps earlier in the day but late that night I went extremely light headed and dizzy and then I had severe heart palpitations, I was finding it hard to breath and I was quite worried about it all. I took my inhaler but it didn't help, my mum slpt in my bed that night to keep an eye on me (bare in mind its a single bed). I was still up at silly o'clock, I couldn't sleep with the palpitations and I didn't know what to do.
That's about all I can remember about it that week but I know it lasted longer than those 5 days. my Summer was not great. :(
*huggles* to everyone!!!
Friday 30 August 2013
Forever Your Fan
I came across this and thought of everyone out there that get done about everything we go through; well I want you all to know that I'm your biggest fan. Even if I don't know you I understand what you go through and I'm amazed at how strong we all are.
*huggles* for everyone!!!
Saturday 10 August 2013
Lovely Linda
So, my new carer started yesterday. I haven't spoken to anyone from the agency but the social workers managed to find this new agency and arrange to have actual 'teenage suitable' times instead of 'early bird special' times.
My carer comes everyday from 18.00-19.30 and at weekends the between 10.00-11.00.
Yesterday Linda came round; she's really friendly, chatty, up for a laugh, happy, helpful, caring and understandable. She told us that she is my primary carer. We spent half an hour chatting yesterday with my mum and then we proceeded to wash me, I was explaining what to do as we washed me but I started to slip and I was getting more hurty so my mum had to come in and hold me. Linda was great though, she was helping me to keep my dignity and modesty whilst washing me and she took all my 'orders' (instructions) and took everything on board.
My mum was at home yesterday so she was making my dinner which is what Linda would normally do so, because we washed my hair, Linda plaited it for me because its getting more and more painful for me to do it myself. Whilst she did so we carried on chatting and she stayed an extra half an hour just to talk to me. I like that because not only are Carers supposed to help me to do things and care for me but they are also company for me which, when my mums not home, is what I need. I haven't seen my friends since uni finished in mid may and my sister has moved out so if I want to do anything I rely on my mum or my sister (when she's around) but because my mum isn't here I'm all on my own so it's nice to have someone to talk to and not want to rush me so they can go home.
This morning my carer came in whilst I was sleeping, we have a key safe (because I'm either unable to get to the doer or I'm asleep like this morning) and she brought me a drink and breakfast in bed because I'm in a lot of pain when I wake up and due to my POTS I have to drink and eat before I get out of bed. This morning I was in more pain than normal though. She also made sure I took my meds,the other 'carers' (not sure if I'd call them that because if they did come they barely cared) just rushed me, hurt me and left before they were supposed to.
Linda stayed longer again today because we were chatting :) it's nice to have someone who wants to be here and seems to really care about the people she looks after.
Not having the best day though, my joints are achy and I'm still in a lot of pain :(
*huggle* for everyone!!!
Friday 9 August 2013
Grumpy Granparents
I don't know if any of you have family members that don't understand you conditions or their symptoms, side effects or associated flare ups and sudden floopiness.
My grandma and grandpa continuously tell me that its all in my head; "if you think you can be better then you will be, 'mind over matter'". They are both busy bodies who want to know everything all the time. They want to know our friends, what we get up to and they control when my mum can drive (they hold it over her).
We don't want to telll them these things and we would like to keep them in the dark about everything but unfortunately they just turn up out of nowhere which makes this difficult.
They also tell me that "its the pills that are making me ill and that I should stop taking them all which would fix everything". So naive! They don't want to know, knew it previously and can't remember or just paranoid (which my grandma is!!) because these conditions are the reasons I'm on medication. The doctors don't just help you to pop pills (and if they did I'm sure they'd give me some better ones) it's just that my conditions aren't under control because we're still trying to find the right meds, dosage and frequency of my pills.
They don't have any understand let alone basic understanding of ANY of my conditions. It's not just them, my sister loves me and she has a little understanding of them but she doesn't know what they are or my full flareups/episodes of pain, fainting, sickness, etc... Nones of them seem to want to understand. My grandparents just like to be involved and make me feel bad about being ill and needing help to go to all my hospital appointments; they say "we're happy to help when ever you need us" but when we need them it's a hassle, they're always late, almost always grumpy (which makes it difficult in the car), make snide cmments about my weight, my illnesses, how much of a hassle I am to them and how it makes them depressed...
THEY'RE depressed?!
All they're doing is driving me... I don't let them come in to the hospital appointments because they go of subject, talk about how proud they are of my uncle, what conditions they have, etc... but when my mum and I come out they want to know everything that was said and one which causes me to wait longer while we explain it but I'm always in a lot of pain after them so I just want to come home and when we tell them that it seems my grandma spites me by going on bumpy roads (when there are routs home that don't involve bumps) and (she's an AWFUL driver anyway - she drives on the wrong side of the road, swerves, goes through red lights even when the cars start to come toward us) she even stops to go shopping leaving me in the stuffy car in agony.
Thoughtless!
My mum is thy only one who seems to want to understand, helps me when I can't move and when I try to explain how I'm feeling (e.g. in pain, floopy, drained, feeling faint, needing breaks/sleep etc...) my mum tries to help as best she can and she buys me sweet and salty things for when I'm floopy.
Thing is; these people are part of my family, if they're not bothered about it what does that say for everyone else in the world (not related to me).
It's hard for me to do a lot of things so I do need help but... Will people want to understand? Will they pity me? Will they help me?
I wish there could be some seminar to teach people about my conditions or anybody else (including you), (even myself because I don't really know THAT much about my conditions and what the effects are on me and how it will affect me in my lifetime) so that family, friends, people you come into contact with, and strangers will have a better grasp/ comprehension of them and us because I'm not my conditions but my conditions are part of me.
*huggles* for everyone!!!
My grandma and grandpa continuously tell me that its all in my head; "if you think you can be better then you will be, 'mind over matter'". They are both busy bodies who want to know everything all the time. They want to know our friends, what we get up to and they control when my mum can drive (they hold it over her).
We don't want to telll them these things and we would like to keep them in the dark about everything but unfortunately they just turn up out of nowhere which makes this difficult.
They also tell me that "its the pills that are making me ill and that I should stop taking them all which would fix everything". So naive! They don't want to know, knew it previously and can't remember or just paranoid (which my grandma is!!) because these conditions are the reasons I'm on medication. The doctors don't just help you to pop pills (and if they did I'm sure they'd give me some better ones) it's just that my conditions aren't under control because we're still trying to find the right meds, dosage and frequency of my pills.
They don't have any understand let alone basic understanding of ANY of my conditions. It's not just them, my sister loves me and she has a little understanding of them but she doesn't know what they are or my full flareups/episodes of pain, fainting, sickness, etc... Nones of them seem to want to understand. My grandparents just like to be involved and make me feel bad about being ill and needing help to go to all my hospital appointments; they say "we're happy to help when ever you need us" but when we need them it's a hassle, they're always late, almost always grumpy (which makes it difficult in the car), make snide cmments about my weight, my illnesses, how much of a hassle I am to them and how it makes them depressed...
THEY'RE depressed?!
All they're doing is driving me... I don't let them come in to the hospital appointments because they go of subject, talk about how proud they are of my uncle, what conditions they have, etc... but when my mum and I come out they want to know everything that was said and one which causes me to wait longer while we explain it but I'm always in a lot of pain after them so I just want to come home and when we tell them that it seems my grandma spites me by going on bumpy roads (when there are routs home that don't involve bumps) and (she's an AWFUL driver anyway - she drives on the wrong side of the road, swerves, goes through red lights even when the cars start to come toward us) she even stops to go shopping leaving me in the stuffy car in agony.
Thoughtless!
My mum is thy only one who seems to want to understand, helps me when I can't move and when I try to explain how I'm feeling (e.g. in pain, floopy, drained, feeling faint, needing breaks/sleep etc...) my mum tries to help as best she can and she buys me sweet and salty things for when I'm floopy.
Thing is; these people are part of my family, if they're not bothered about it what does that say for everyone else in the world (not related to me).
It's hard for me to do a lot of things so I do need help but... Will people want to understand? Will they pity me? Will they help me?
I wish there could be some seminar to teach people about my conditions or anybody else (including you), (even myself because I don't really know THAT much about my conditions and what the effects are on me and how it will affect me in my lifetime) so that family, friends, people you come into contact with, and strangers will have a better grasp/ comprehension of them and us because I'm not my conditions but my conditions are part of me.
*huggles* for everyone!!!
Wednesday 7 August 2013
Not-So Caring Agency.
Recently I've started having care at home, I'm used to having it at uni but due to my injury and my medical conditions, my mobility has become a lot worse so it's hard for my mum to cope with me on her own.
They were arranged to start on Thursday but I had a late hospital appointment so we asked for it to start on Friday. The care agency (A) sent a carer anyway because they didn't listen; so because we weren't expecting anyone we'd already done what we needed them to do.
They were arranged to start on Thursday but I had a late hospital appointment so we asked for it to start on Friday. The care agency (A) sent a carer anyway because they didn't listen; so because we weren't expecting anyone we'd already done what we needed them to do.
Friday and Saturday I had 3 carers; (I'm going to use their initials for each of them) F was the carer who came on the Thursday, she seemed nice, but she seemed like she wanted to hurry up and get every thing done quickly so she could leave as soon as possible, she was also being rough when she was helping to bathe me, and she made me feel uncomfortable. T was my favourite carer, she was 19, training to be a nurse and she stayed with me until the end of the hour and a half to talk to me instead of rushing to get out. D was a bit creepy, she was nice, helpful but she got really close, in my face with her eyes wide open wanting to help me actually go to the toilet, F did the same. I know I need help getting to the bathroom but once I am sitting I am able to spend a penny myself.
Saturdays and Sundays my mum isn't at home so I have care one hour in the morning and an hour and a half in the evening.
Saturdays and Sundays my mum isn't at home so I have care one hour in the morning and an hour and a half in the evening.
Sunday night a new carer, that I've never met or heard of turned up at 6.20 when care is at 5-6.30 (which is not what we wanted, we wanted a later call because I'm not really hungry for dinner at 5. She said that she was told it was that my care was at 6-7.30, but when we said that we'd made prior arrangements because we didn't know if she was coming she said that her motorbike broke down. It just seemed like excuses. We told her that she wasn't needed, she turned from being a smiley, nice seeming carer to a grumpy one and she stormed off.
On Monday the manager came round to find out what my care needs are, what the carers had to help me with, what my conditions are, etc... (I'm not that experienced in care but I would have thought that this would have happened before the care actually started). Before this we had to explain everything to each of the carers - my medications, conditions, needs and what to do if I faint or have an anaphalactic shock. None of the carers seemed to know what the recovery position was or what an epipen is or how to use it. When we asked the manager if they'd been medically, safety and food hygiene trained he said yes but he wasn't very confident in the answer and he said "yeah, if they weren't we'd be sued"... that doesn't really sound like a definite answer.
The next day we called Social Services to say that I didn't really feel safe or confident in them so can we have a different agency. My appointed social worker from last year, C, arranged for this company but she put me in the done pile but she was on duty so she sorted it. This time C was also on duty and she said she'd call back... That didn't happen.
On Monday the manager came round to find out what my care needs are, what the carers had to help me with, what my conditions are, etc... (I'm not that experienced in care but I would have thought that this would have happened before the care actually started). Before this we had to explain everything to each of the carers - my medications, conditions, needs and what to do if I faint or have an anaphalactic shock. None of the carers seemed to know what the recovery position was or what an epipen is or how to use it. When we asked the manager if they'd been medically, safety and food hygiene trained he said yes but he wasn't very confident in the answer and he said "yeah, if they weren't we'd be sued"... that doesn't really sound like a definite answer.
The next day we called Social Services to say that I didn't really feel safe or confident in them so can we have a different agency. My appointed social worker from last year, C, arranged for this company but she put me in the done pile but she was on duty so she sorted it. This time C was also on duty and she said she'd call back... That didn't happen.
The next week, on Monday we cancelled care when I was in agony, throwing up and having diarrhoea. We'd also called the agency to tell them that I wasn't really getting on with F and F seemed to be my primary carer (even though we asked for T to be my primary carer) and I didn't want to have her anymore, they said they'd call us back but we didn't hear back from them.
We reinstated care for Monday so we had to come home for five from a family do but we were about 10 minutes late, we were worried that we'd left them waiting but when we got home but no one came. If I had been on my own it could have been execrable as I can't cook, carry, walk or even go to the toilet myself.
On Tuesday F came at 3 to apologise for forgetting to come (FORGETTING?!? Do they do this to their old clients who could be worse than me?? I mean, really?? She FORGOT?!) the day before; we called up the care agency so to tell them that we didn't want them to send her anymore; they said to us "why hadn't we mentioned something earlier" which we did the week before. It should have been noted down on the system. They said that they'd have to cancel care because it was short notice. And yet F came back at 5 anyway as my carer.
By Wednesday I was fed up with this company so we called the Social Worker and a nice man, H, was on duty, he managed to get the agency to send someone else (miraculously it happened almost instantly). The care agency told us that they were sending someone, K. We finally got someone other than F. Amazing.
It got to 5.30, and no K so we called the care agency to find out what happened to her. They said they'd call back after they get in contact with her. It got to 6.20 and no phone call so we called them back. They said that they couldn't get hold of her so they were sending someone else but they had to finish all their other clients before they could come here so they couldn't tell us when they were coming or even WHO was coming.
We told them that I have to take my pills at certain times and their carers were interfering with that, so if they'd turn up later, after I took my tablets, I wouldn't be able to get up to be washed/showered which is always difficult even before I take my medication. So we cancelled it in the end because they weren't here to help when I needed it. They acted as if WE'D done something wrong saying "fine then" as if WE'D put THEM out.
The Carers that came after we saw he managers still didn't know the recovery position, what epipens are, how to use them, what my meds are and my conditions. I need them to help me when I need it, to understand my conditions. I also need to get on with them and feel safe and comfortable around them. I need to know that they ARE coming when I need them. They need to know the difference between floopy and sleepy and I need to have continuity with care and not have a million carers in and out, not getting to know me or my conditions or to just want to get things done quickly even though I can't go a long with that pace.
The care agency wouldn't listen to us, they didn't seem to care about my conditions, they only wanted to hear the answers to their questions and nothing else.
We called H again to tell him that nobody came and he agreed that this company isn't right for me so he arranged for a new contract with another care agency but they couldn't start, he said, until today. H was hoping that I would agree to stick with the uncaring care agency (A) until then but I didn't feel comfortable with that; my mum wouldn't be here and I couldn't be sure that someone would turn up, I mean they forget, don't come at all or send the wrong person. He understood all of this but he didn't want me to be on my own so we arranged for me to stay at my sister's house over the weekend. It wasn't exactly the best place for me to be because her only bathroom is upstairs and I can barely stand with my crutches and especially walk but I was able to, painfully, bum shuffle up and down the stairs and I had my sister their to help me wash, make food and altogether look after me but I made sure I want in the way and I even helped occupy my niece so that my sister could do some more unpacking. I also got my sister, her fiancé and my niece a little prezzie each.
Today we spoke to the social worker secretary and found out that they wanted a four o'clock call for this evening (I don't want an early-bird special) but that was way too early so we cancelled it for tonight and hoped it could be arranged later for tomorrow but C was on duty again and called us up, she said she wasn't happy about me not having care this evening so she wanted me to have it, we told her it was too early so she said she'd call us back but, Quelle Surprise, it is now twenty past four and no phone call and no carer.
Anyway, I'll keep you updated with this...
*huggle* for everyone!!!
We called H again to tell him that nobody came and he agreed that this company isn't right for me so he arranged for a new contract with another care agency but they couldn't start, he said, until today. H was hoping that I would agree to stick with the uncaring care agency (A) until then but I didn't feel comfortable with that; my mum wouldn't be here and I couldn't be sure that someone would turn up, I mean they forget, don't come at all or send the wrong person. He understood all of this but he didn't want me to be on my own so we arranged for me to stay at my sister's house over the weekend. It wasn't exactly the best place for me to be because her only bathroom is upstairs and I can barely stand with my crutches and especially walk but I was able to, painfully, bum shuffle up and down the stairs and I had my sister their to help me wash, make food and altogether look after me but I made sure I want in the way and I even helped occupy my niece so that my sister could do some more unpacking. I also got my sister, her fiancé and my niece a little prezzie each.
Today we spoke to the social worker secretary and found out that they wanted a four o'clock call for this evening (I don't want an early-bird special) but that was way too early so we cancelled it for tonight and hoped it could be arranged later for tomorrow but C was on duty again and called us up, she said she wasn't happy about me not having care this evening so she wanted me to have it, we told her it was too early so she said she'd call us back but, Quelle Surprise, it is now twenty past four and no phone call and no carer.
Anyway, I'll keep you updated with this...
*huggle* for everyone!!!
Bowel Bacteria Build up
For about 2 weeks or so I have had awful pains in my tummy, and I was constipated (sorry but this entry might be a bit gross... but it's what I have to deal with and what, some of, you may have as well; this might even help some of you.)
Suddenly, when I woke up one morning I felt sick (not my usual, nauseous, every sick) I felt as if I was about to throw up and the pain in my stomach felt like I was being stabbed in the gut and someone was twisting it. In my state I wasn't able to get to the bathroom with my crutches (the day before I fell and ended up with large, colourful and painful bruises) I was just too floopy and I kept falling over. Luckily, (not for her) my mum uses a walker to get around and she came up with the most ingenious plan of bringing her walker to me in bed, I transfer onto it and she pushes me to the bathroom (I wasn't able to close the door because the walker was in the way).
I had the most (WARNING: VULGER INFORMATION!) slimey, yellow diarrhoea a couple times an hour. I was also puking every time I drunk more than a tiny sip of water or ate anything... I was only eating dry foods like noodles, matzah (kosher cracker) and rice but I wasn't able to keep any of it down, I actually felt better just after I had been sick and after a while it was just bile.
I was finding it hard to move because I wasn't keeping my pills down so I had no painkillers (even if my leg was fine I am still on painkillers for all my other conditions). I was also fainting when ever I wasn't being sick. Every time I moved the jerking of the movements made me fell like I had to throw up so we cancelled care for a few days (the care agency wasn't very nice about it but more about them in the next entry). When the carer did come we hadn't worked out the walker transportation yet so I was having to use my gutter crutches and even on a good day I'm some what wobbly but I was so wobbly it seemed like I spent more time banging on the walls or falling on the floor. The carer was trying to steady me but she did so by holding me tight or gripping onto me so hard that she gave me bruises.
This lasted for 4 days when we decided it wasn't a bug and it was the evil thing I get once/twice a year so my mum called the doctor to see if they'd come round to see me and give me an anti-sickness injection but we were told that doctors surgeries don't administer anti-sickness injections, only hospitals do but they probably wouldn't give it to me because I was able to keep very little water down so I wasn't dehydrated enough, they also wouldn't give me an IV (This is what usually happens when I am admitted into hospital for this same problem). The doctor prescribed prochlorperazine that I put in between my top lip and my gum which would dissolve (why is it that all the anti-sickness pills taste so disgusting that they make you want to be sick... you'd think they'd at least flavour them to try to cover up the grossness of them).
I tried them for 2 days and I was still throwing up (at least 6-7 times a day) we were trying to decide if it was worthwhile to go to the hospital, what would they do, what do they normally do to make me better and did I really want to go into hospital for however long or see if we could do something so I could get better at home. So my mum called the doctor again as soon as they opened to discuss what else they could do to help. We had to wait for the doctor to call us back which wouldn't be until they finish their clinic and do all their phonecalls but in the meantime we were planning how I would be able to get out the house (because I still couldn't stand up or use my crutches) when suddenly my mum remembered about two years ago I was admitted into Charing Cross hospital for this same thing the hospital was able to get in contact with my gastroentrologist, Professor Aziz, and he said that people with hypermobility of the bowel would sometimes get a build up of bad bacteria and he prescribed an antibiotic which got me better quicker than usual (that time I was only in hospital for 3 days whereas beforehand I was in for 8,7 and 5 days). Seeing as we had to wait from 8 am until the doctor would do their phone calls at twenty past eleven we thought we would try to get in contact with Professor Aziz, it took us a few phone numbers and a couple calls to the wrong hospitals but we finally got through to his secretary and she did a searh for my file but it turned out that he had signed me off so she was unable to look at my file. This is not good because, obviously, my bowel issues have not been sorted seeing as I am still having problems; all he did was tell me to have 2 Pro Bio 7 tablets a day which is NOT working so we have to try and get seen by him again.
Anyway, back to what I was talking about. Because my mummy is a genius, when the doctor FINALLY called us back we were able to get them to look at my notes from when I was in Charing Cross and he was able to prescribe me Ciprofloxacin (the anti-biotic). He said to wait a couple days before taking it in case it would go on its own... so obviously, I waited until my mum came back from the pharmacy to take them and that evening I was able to eat a small amount of plain noodles.
Also, the last time I was discharged from the hospital we got some anti-diarrhea/immodium tablets so I started taking them. I didn't get better straight away but I was on the mend.
About three days later I could eat, almost, normally and yesterday I was able to hop on my crutches (only to the bathroom, but still... I was able to stand) :D
I hope that this may have helped some of you that this happens to and you never know what it is, what to do or what could help.
*huggle* for everyone!!!
Suddenly, when I woke up one morning I felt sick (not my usual, nauseous, every sick) I felt as if I was about to throw up and the pain in my stomach felt like I was being stabbed in the gut and someone was twisting it. In my state I wasn't able to get to the bathroom with my crutches (the day before I fell and ended up with large, colourful and painful bruises) I was just too floopy and I kept falling over. Luckily, (not for her) my mum uses a walker to get around and she came up with the most ingenious plan of bringing her walker to me in bed, I transfer onto it and she pushes me to the bathroom (I wasn't able to close the door because the walker was in the way).
I had the most (WARNING: VULGER INFORMATION!) slimey, yellow diarrhoea a couple times an hour. I was also puking every time I drunk more than a tiny sip of water or ate anything... I was only eating dry foods like noodles, matzah (kosher cracker) and rice but I wasn't able to keep any of it down, I actually felt better just after I had been sick and after a while it was just bile.
I was finding it hard to move because I wasn't keeping my pills down so I had no painkillers (even if my leg was fine I am still on painkillers for all my other conditions). I was also fainting when ever I wasn't being sick. Every time I moved the jerking of the movements made me fell like I had to throw up so we cancelled care for a few days (the care agency wasn't very nice about it but more about them in the next entry). When the carer did come we hadn't worked out the walker transportation yet so I was having to use my gutter crutches and even on a good day I'm some what wobbly but I was so wobbly it seemed like I spent more time banging on the walls or falling on the floor. The carer was trying to steady me but she did so by holding me tight or gripping onto me so hard that she gave me bruises.
This lasted for 4 days when we decided it wasn't a bug and it was the evil thing I get once/twice a year so my mum called the doctor to see if they'd come round to see me and give me an anti-sickness injection but we were told that doctors surgeries don't administer anti-sickness injections, only hospitals do but they probably wouldn't give it to me because I was able to keep very little water down so I wasn't dehydrated enough, they also wouldn't give me an IV (This is what usually happens when I am admitted into hospital for this same problem). The doctor prescribed prochlorperazine that I put in between my top lip and my gum which would dissolve (why is it that all the anti-sickness pills taste so disgusting that they make you want to be sick... you'd think they'd at least flavour them to try to cover up the grossness of them).
I tried them for 2 days and I was still throwing up (at least 6-7 times a day) we were trying to decide if it was worthwhile to go to the hospital, what would they do, what do they normally do to make me better and did I really want to go into hospital for however long or see if we could do something so I could get better at home. So my mum called the doctor again as soon as they opened to discuss what else they could do to help. We had to wait for the doctor to call us back which wouldn't be until they finish their clinic and do all their phonecalls but in the meantime we were planning how I would be able to get out the house (because I still couldn't stand up or use my crutches) when suddenly my mum remembered about two years ago I was admitted into Charing Cross hospital for this same thing the hospital was able to get in contact with my gastroentrologist, Professor Aziz, and he said that people with hypermobility of the bowel would sometimes get a build up of bad bacteria and he prescribed an antibiotic which got me better quicker than usual (that time I was only in hospital for 3 days whereas beforehand I was in for 8,7 and 5 days). Seeing as we had to wait from 8 am until the doctor would do their phone calls at twenty past eleven we thought we would try to get in contact with Professor Aziz, it took us a few phone numbers and a couple calls to the wrong hospitals but we finally got through to his secretary and she did a searh for my file but it turned out that he had signed me off so she was unable to look at my file. This is not good because, obviously, my bowel issues have not been sorted seeing as I am still having problems; all he did was tell me to have 2 Pro Bio 7 tablets a day which is NOT working so we have to try and get seen by him again.
Anyway, back to what I was talking about. Because my mummy is a genius, when the doctor FINALLY called us back we were able to get them to look at my notes from when I was in Charing Cross and he was able to prescribe me Ciprofloxacin (the anti-biotic). He said to wait a couple days before taking it in case it would go on its own... so obviously, I waited until my mum came back from the pharmacy to take them and that evening I was able to eat a small amount of plain noodles.
Also, the last time I was discharged from the hospital we got some anti-diarrhea/immodium tablets so I started taking them. I didn't get better straight away but I was on the mend.
About three days later I could eat, almost, normally and yesterday I was able to hop on my crutches (only to the bathroom, but still... I was able to stand) :D
I hope that this may have helped some of you that this happens to and you never know what it is, what to do or what could help.
*huggle* for everyone!!!
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