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!!!
Tuesday, 22 October 2013
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!!!
Monday, 15 July 2013
Nice Day For Nasty
Today has been quite mellow. I got dressed and stayed in bed until my mum came home. We had lunch and then left to do some errands.
My mum is trying to instigate this new plan of hers that we do some jobs and then go out. She doesn't want me to be stuck at home all day everyday for the whole of summer.
My mum bought me a mini fridge to sit in my room for when nobody's in and I find it hard to move I'll have food and drinks refridgerated.
Our next job was to take things back to hobbycraft and next which went swimmingly. We went to have a nice cool drink in Costa (my favourite drink at the moment is the Tropical Fruit - I don't drink alcohol for a few reasons [going off topic] my sister says its like a virgin piña colada).
Anyway, I was feeling most summery... It REALLY warm out an I'm wearing my most summery outfit I have worn (since my mum dressed me when I was little) and I was even wearing summery makeup that matches my clothes but I felt I needed summery lipstick-something-or-other so we went to boots.
My mum magically found a lovely lipthingy but we were still looking at our options. We turned into the next aisle (mummy was pushing me in my wheelchair) and there was a woman helping a lady with the makeup so my mum started making beeping sounds to let them know someone was behind them and yet the lady stepped back (almost fell on me) my mum apologises but the lady decided to say something "What's the good of you beeping all that when I was clearly standing in front of you liking you just stop; You ran over my shit". My mum continued to apologise but the woman kept on so I spoke up "You should be looking where you're going I actually disabled and you could've really hurt me" I could tell that she wanted to continue but I think I shocked her, it really shut her up. I mean my mum couldn't see in front properly because there was my wheelchair AND my immobilised leg sticking out.
She Should have been watching where she was going because it's true anyone who is in a wheelchair can make sounds to let people know that they're behind them but unless people look where they are going it could have really hurt me or anyone else who was in that chair and she wasn't even sorry, she wouldn't let off my mum and I thought that was really out of order of her.
It upset both me and my mum and I don't think we did anything wrong. I didn't want to be rude but she was trying to be rude even though it was her fault.
What would you have done?
*huggles* for everyone!!!
*huggles* for everyone!!!
Thursday, 11 July 2013
Sweet Spoons
I dodn't know if any of you have heard of 'The Spoon Theory'.
I've started getting more involved with my POTS and Dysautonomia groups on Facebook and talking to the potsies on Instagram. The instagram people refer to themselves as spoonies and I had no idea why. I asked one of why they were 'spoonies' and they replied "have you heard of 'The Spoon Theory'?". I asked them what 'The Spoon Theory' was and when they didn't reply I looked it up.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
It's about a woman explaining her condition to her friend in a way that they can understand without actually having any conditions, illnesses or disabilities. She explains that she gets a certain amount of spoons each day and she has to plan her day carefully because each activity she does costs her a spoon whereas everyone else doesn't even think about what they doing. It could cost a spoon to just make breakfast.
I found 'The Spoon Theory' incredibly easy to understand (it even helped me to understand myself a bit more). I've decided that I will send it to my friends and family to understand it better. My friends and family know about my conditions, illnesses and disabilities but it's one thing knowing what they are and another to understand what they do to me.
I sent it to one of my closest friends at Uni and I was surprised and moved that he read it (I wasn't moved because he read it, I was moved by what he did next) he said to me that he wishes he could give me all of his spoons. Isn't that sweet?! Before you go there... I don't fancy him, he is one of my closest friends (plus he's gay).
I also gave it to my mum to read and it made her cry. She already knows what it is like because she has some conditions so she gets given spoons too.
It's a lovely story. I urge you to read it if you haven't.
*huggles* for everyone!!!
I've started getting more involved with my POTS and Dysautonomia groups on Facebook and talking to the potsies on Instagram. The instagram people refer to themselves as spoonies and I had no idea why. I asked one of why they were 'spoonies' and they replied "have you heard of 'The Spoon Theory'?". I asked them what 'The Spoon Theory' was and when they didn't reply I looked it up.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
It's about a woman explaining her condition to her friend in a way that they can understand without actually having any conditions, illnesses or disabilities. She explains that she gets a certain amount of spoons each day and she has to plan her day carefully because each activity she does costs her a spoon whereas everyone else doesn't even think about what they doing. It could cost a spoon to just make breakfast.
I found 'The Spoon Theory' incredibly easy to understand (it even helped me to understand myself a bit more). I've decided that I will send it to my friends and family to understand it better. My friends and family know about my conditions, illnesses and disabilities but it's one thing knowing what they are and another to understand what they do to me.
I sent it to one of my closest friends at Uni and I was surprised and moved that he read it (I wasn't moved because he read it, I was moved by what he did next) he said to me that he wishes he could give me all of his spoons. Isn't that sweet?! Before you go there... I don't fancy him, he is one of my closest friends (plus he's gay).
I also gave it to my mum to read and it made her cry. She already knows what it is like because she has some conditions so she gets given spoons too.
It's a lovely story. I urge you to read it if you haven't.
*huggles* for everyone!!!
Potsy With(out) Patches
Last night I was in a lot of pain so I had to take some pain killers again. Not long, like a couple minutes, after I started to feel more nauseous than normal; I grabbed my pink bucket (which got a lot of hugs last night and over the last few days) and I had my head hanging in it until I fell asleep. At one point I thought I wasn't feeling too bad so I asked my mum for some apple pieces. Weirdly, when II was eating it I didn't feel so sick but directly after each piece I ended up with sick in my mouth causing me to hug my bucket. I decided that I was getting a headache so I would rub '4head' on my head to help reduce my migraine and then I put my eye mask on for the headache and lay down on my mums bed (I also put a pillow over my eyes - just something I do). My mum was talking to me and then we stopped. I don't know how long after it was but mummy started talking to me again; I wasn't very happy with what happened next... I was disorientated; I didn't have any idea where I was, I only knew that my mum started talking to me. This is still making me worried and sad today. :(
This morning I woke up in utter pain again; I couldn't move, it was that painful. My mum told me "take the patch off, it's obviously not helping and it's making you miserable" and straight away... it was off. So, now I'm back on my old regime of medications.
I have a Doctors appointment next week so I will discuss it with her then.
No idea what I'll be told to go on next but I know one thing... I will read the side effects!! (best part)
*huggles* for everyone!!!!
This morning I woke up in utter pain again; I couldn't move, it was that painful. My mum told me "take the patch off, it's obviously not helping and it's making you miserable" and straight away... it was off. So, now I'm back on my old regime of medications.
I have a Doctors appointment next week so I will discuss it with her then.
No idea what I'll be told to go on next but I know one thing... I will read the side effects!! (best part)
*huggles* for everyone!!!!
Tuesday, 9 July 2013
UPDATE: Potsy with Patches
So, I've had this patch on for over a day now. It kind of works...
...but, I woke up in sooooooooo much pain. It's like when you haven't taken your pills at the right times or you sleep through the alarms you set to wake you up to take your pills and it hurts to move, breath, even think about doing anything.
The doctor said I could take a codomol (can't remember if it was co-dy or co-co so I've been taking co-dy [not that I understand the difference between the two]).
That wasn't the last time today I had to top up... everything is a lot more achey and some things (obviously I can't do all the things everyone else does but I find ways to do my own things) I can normally do on all my pills just cause a knock-on effect that takes about 3 seconds that makes me scream out in pain asking for something to help. Plus, when I was hopping to lounge I forgot to readjust my leg/knee immobiliser (because if I don't do it before I hop it starts to slide/fall down) and it fell/slid and pulled down on my knee and it hurt SOOOOO much! ever since then my leg has been killing me which just made cleaning me even worse and THAT is normally a laugh and a half... Imagine me sitting on the lid of the loo with my leg up in the air leaning on the edge of the sink and my head leaning on the edge of the bath... and that's JUST for washing my hair. For my body, I sit on the edge of the bath in my bra and knickers whilst gripping hard on one of the grab rails with one leg down hard on the bottom of the bath and my bad leg hovering outside on the other side of the bath and then my mum helps clean me and then she closes her eyes whilst I clean my lady bits.
Now, I'm about to take Tramadol after two sets of co-dy and then going to 'hopefully' sleep.
Not looking good for this patch thing!
:/
*huggles* for everyone!!
Oh, if any of you are having a hard time getting your friends and family to understand everything going on with you then you should read and send on the spoon theory
...but, I woke up in sooooooooo much pain. It's like when you haven't taken your pills at the right times or you sleep through the alarms you set to wake you up to take your pills and it hurts to move, breath, even think about doing anything.
The doctor said I could take a codomol (can't remember if it was co-dy or co-co so I've been taking co-dy [not that I understand the difference between the two]).
That wasn't the last time today I had to top up... everything is a lot more achey and some things (obviously I can't do all the things everyone else does but I find ways to do my own things) I can normally do on all my pills just cause a knock-on effect that takes about 3 seconds that makes me scream out in pain asking for something to help. Plus, when I was hopping to lounge I forgot to readjust my leg/knee immobiliser (because if I don't do it before I hop it starts to slide/fall down) and it fell/slid and pulled down on my knee and it hurt SOOOOO much! ever since then my leg has been killing me which just made cleaning me even worse and THAT is normally a laugh and a half... Imagine me sitting on the lid of the loo with my leg up in the air leaning on the edge of the sink and my head leaning on the edge of the bath... and that's JUST for washing my hair. For my body, I sit on the edge of the bath in my bra and knickers whilst gripping hard on one of the grab rails with one leg down hard on the bottom of the bath and my bad leg hovering outside on the other side of the bath and then my mum helps clean me and then she closes her eyes whilst I clean my lady bits.
Now, I'm about to take Tramadol after two sets of co-dy and then going to 'hopefully' sleep.
Not looking good for this patch thing!
:/
*huggles* for everyone!!
Oh, if any of you are having a hard time getting your friends and family to understand everything going on with you then you should read and send on the spoon theory
Monday, 8 July 2013
Potsy with Patches
So, the last time I saw, Dr C, my main consultant (we try to get all the other consultants to CC her in to all the letters they write [there are/have been A LOT over the years]) she looked at my list of painkillers and decided that, although I need to be on all those pain killers to help with all my pain, being on all these pain killers are damaging my liver and I'm building up a tolerance to them so they need to be 'upped' from time to time.
Dr C prescribed a solution to this; A pain killer patch that releases the pain killer evenly. I wear one patch each week. It's called BuTrans 10microgram per hour, a Transdermal Buprenorphine Patch. It has to be changed on the same day each week.
Today I put the first one on and, of course, I HAD to read the side effects (as I do for EVERY new medication I get) and there are some good ones;They are written under subtitle's: Very Common, Common, Uncommon, Rare and Very Rare.The best ones are under, as you might be able to guess, are under Uncommon, Rare and Very Rare causing mood swings, feeling detached from oneself, difficulty speaking, a feeling of extreme happiness [this one I kind of want], hallucinations, worsening of breathing problems (such as asthma, weight loss [I kind of want this one, a bit, too], swelling of face, spasms [like the word spasm], an increase in accidental injuries, withdrawal symptoms, mental disorder, diverticulitis (inflammation of the intestine), decreased erection, sexual dysfunction,muscle twitching and blisters.
These are just some of the more interesting ones; a lot of the side effects coincide with the symptoms of POTS and all my other problems so I probably won't notice if I have those side effects.
Have any of you tried these patches before??
If you have, did you get any of the side effects??
Dr C prescribed a solution to this; A pain killer patch that releases the pain killer evenly. I wear one patch each week. It's called BuTrans 10microgram per hour, a Transdermal Buprenorphine Patch. It has to be changed on the same day each week.
Today I put the first one on and, of course, I HAD to read the side effects (as I do for EVERY new medication I get) and there are some good ones;They are written under subtitle's: Very Common, Common, Uncommon, Rare and Very Rare.The best ones are under, as you might be able to guess, are under Uncommon, Rare and Very Rare causing mood swings, feeling detached from oneself, difficulty speaking, a feeling of extreme happiness [this one I kind of want], hallucinations, worsening of breathing problems (such as asthma, weight loss [I kind of want this one, a bit, too], swelling of face, spasms [like the word spasm], an increase in accidental injuries, withdrawal symptoms, mental disorder, diverticulitis (inflammation of the intestine), decreased erection, sexual dysfunction,muscle twitching and blisters.
These are just some of the more interesting ones; a lot of the side effects coincide with the symptoms of POTS and all my other problems so I probably won't notice if I have those side effects.
Have any of you tried these patches before??
If you have, did you get any of the side effects??
Friday, 5 July 2013
Caring Commenter
First comment on my blog...ever. I have had 334 views on my blog since it started September 9th 2011 all over the world and yet this is my first comment. It was also very thoughtful so I wanted to let you guys know that people out there do care! and I wanted to let that person know how much it meant to me.
Freakin' Floopin' Fear
Yesterday I had a horrible potsy floopyness come over me. One second I was playing with my niece and my mummy and the next second I can't think straight, can't really look at anything because I was completely out-of-it, barely hold a thought for a minute, and my whole body was heavy. At some point, I don't remember when, I laid down and my mum took my niece in the other room to change her nappy, my body was shaking and twitching all over, it didn't feel right and I couldn't stop it. I closed my eyes (may have passed out because I could still hear everything - or just dozed off, but the latter seems most likely) and suddenly my mum was standing over to check that I was okay... It must have been a while later because my niece was dressed, so was my sister, and they were leaving.
That was the worst floopiness/potsyness/fainting that I have ever experienced. I have been very floopy before and I have fainted but never anything like that and never THAT bad and THAT scary.
Not sure if that's a 'normal' thing for potsy people :S YOU tell me?!
*huggles* for everyone!!!
That was the worst floopiness/potsyness/fainting that I have ever experienced. I have been very floopy before and I have fainted but never anything like that and never THAT bad and THAT scary.
Not sure if that's a 'normal' thing for potsy people :S YOU tell me?!
*huggles* for everyone!!!
Thursday, 4 July 2013
Clearly clinical
Yesterday I had my appointment at the fracture clinic to find out what was wrong with my leg.
It was a 9.15 appointment at the hospital. It's not the best hospital I've ever been to (as you all know).
I got called in and the doctor barely looked at me, he didn't have my notes so he asked me what I'd done and why I was in a chair (again - I had to explain it multiple times at A&E) then he told me to get on the bed.
He walked out as I proceeded to get up on it. A guy walked in with bandage scissors and cut the Robert Jones bandages whilst hardly talking and being a bit of a grumpus. As soon as he finished he walked out leaving me and my mum alone in the room. We discussed what 'freebies' were in the room but we couldn't find any in sight. I changed the topic of conversation to my leg and foot. My leg looked substantially thinner compared to my 'good' leg. In 2 and a half weeks my leg managed to lose a considerable amount of muscle wastage. I think that this happened so quickly because of my leg history - with it getting injured so often and I have ha a lot of muscle wastage in my 'bad' leg previously.
The doctor FINALLY came back in; he looked at my leg, he checked to see if the knee cap popped but he ruled that out and then he examined my leg thoroughly. The pain was very intense! He came to the conclusion that I may have damaged the cartilage or tore the ligament. He left the room once more and the grumpus returned with a leg splint (can't remember the name of it - it's tri something).
I have to have an MRI but it won't be for a few weeks and then I have to have another appointment with the fracture clinic doctor again.
In the mean time, I had an OT appointment earlier this week and my OT wanted me to make a follow up with her after we found out what was wrong with my leg.
My OT is very kind to me. She is going to contact my social worker to talk about getting Carers at home because at weekends my mummy is helping my sister with my niece and I can't go with because the toilet is upstairs but also it will be just me and my mum at home and I need more care than she is able to help me with. She's also going to talk about my rubbish Carers at Uni. My OT is also helping with my wheelchair debacle, my wheelchair keeps sliding into the road, falling on me and just overall not helping me and when we brought it home the maintenance guy decided there were too many things wrong with it so he had to take it away. my grandparents tried to talk to the wheelchair service about getting me a new and different one but the service said I should buy my own - my grandparents made the situation worse, so my OT said she'd try to help out. My OT also said she write to my Uni about helping me out more because I keep overdoing it and ignoring what my body is telling me because I want to prove to everyone and myself that I can do it all just like they can but I'm not like everyone else. I need to rest, look after myself and pace myself.
My mum called my OT after we went to the fracture clinic and she said I should wait until we have the results of my MRI before making an appointment for OT and physio.
Arghhh...
Oh well.
I hope everyone else is doing well.
*huggles* for everyone!!
Monday, 1 July 2013
Accumulating Conditions
I actually just realised that I haven't put all my conditions on here. Although if I had done I would be adding to it more than 'from time to time'.
My body seems to not be satisfied with the conditions I have it seems to want me to get a record in the Guinness Book Of World Records. My Doctors are also finding new conditions for me. I don't really help matters; I have some symptoms that don't match any of the problems I've already got so I go in search for answers to what they might be.
For University I found it useful to write out all my conditions, allergies and medications for the Uni, for my carers and for me.
So far:
Just in case you are worried about these medications, I DO NOT take them all at the same time. Also, the allergies written in red are the most important and I have the worst reaction to them.
People with Hypermobility are more likely to have certain other conditions such as EDS, POTS, etc... although there is no real reason for this (as far as I am aware).
All of these conditions are what is difficult. I have only been diagnosed with most of these in recent years and I am still trying to understand them, how they work, what my reactions are, what the symptoms are, how I can cope with all of them at university, how each one can react with the others and how the medications work and what their side-effects are.
*huggles* for everyone!!!
My body seems to not be satisfied with the conditions I have it seems to want me to get a record in the Guinness Book Of World Records. My Doctors are also finding new conditions for me. I don't really help matters; I have some symptoms that don't match any of the problems I've already got so I go in search for answers to what they might be.
For University I found it useful to write out all my conditions, allergies and medications for the Uni, for my carers and for me.
So far:
Medical Conditions:
POTS (Postural Orthostatic Tachycardia Syndrome)
EDS (Ehlers Danlos Syndrome)
Hypermobility
Hypermobility of the bowel
Four prolapsed discs
Scheuermans disease
Degenerative disc disease
Left Ankle instability - surgery gone wrong
Migrainous vertigo
Hearing loss – I have hearing aids
Tinnitus
Anemic
Asthma
CPRS (Chronic Regional Pain Syndrome)
Vitamin D deficient
Allergies:
Ibuprofen
Carrots
Black pepper
Cinnamon
Nutmeg
Smoked salmon
Popcorn
Orange squash
Baked Beans
Caffeine
Dairy
Allergic to some plasters, perfumes, creams and washing powders
Medication:
Amitriptyline – 100mg – evening only
Paracetamol – 2 tablets when needed up to 4 times a day
Midodrine – 5mg x 3 times a day
Pregabalin – 150mg x 2 times a day
Domperidone - 1 tablet up to 4 times a day
Erythrocin – 1 tablet x 2 times day
Codeine – 15mg x 2 when needed up to 4 times day
Cocodomol – 10/500 x 2 when needed up to 4 times a day
Codydromol – 10/500 x 2 when needed up to 4 times a day
Erythrocine – morning and evening
Pro bio 7 – evening only
Seritide inhaler – 2 times a day but increase to up to 4 times a
day if unwell
Tramadol - 50mg 1 or 2 tablets as and when needed
Just in case you are worried about these medications, I DO NOT take them all at the same time. Also, the allergies written in red are the most important and I have the worst reaction to them.
People with Hypermobility are more likely to have certain other conditions such as EDS, POTS, etc... although there is no real reason for this (as far as I am aware).
All of these conditions are what is difficult. I have only been diagnosed with most of these in recent years and I am still trying to understand them, how they work, what my reactions are, what the symptoms are, how I can cope with all of them at university, how each one can react with the others and how the medications work and what their side-effects are.
*huggles* for everyone!!!
Hurty Hopping
Yesterday I went shopping with my mum, sister and niece. Me and my mum went to get our nails done (I did mine for my sister's party and I got them redone for comic con). My sister had other erands to do. unfortunately we were a bit slow when we first go there and my mum had to leave at 2. I borrowed an electric wheelchair from shop mobility and they told me it had to be back at 4.
We got to the nail place but we had to wait about half an hout and I said my mum should go first. This was silly because she was having one colour and I was having a design. Needless to say mine took a lot longer to do so when 2 o'clock came around I told my mum that she should go with my sister and then my sister would ome back for me.
My nails were finally done by 3.15-3.30 so I had to get the chair back to shop mobility very soon. I got a text from my mum telling me that my niece wasn't happy so my sister didn't want to go into the car park again; she wanted to wait outside Debenhams.
I HATED THIS PLAN!!!
I had returned the chair which meant I had to hop on my 2 gutter crutches, in my welly (which has a tiny heel and I am not used to ANY heel) to the lift which was a 2 minute walk but took ages to hop. Then I had to stand and wait for the lift. I went to the next floor and I had to hop from one side of Debenhams to the other.
The hopping was hurting my good foot, joulting my bad leg and making me floopy. I had to keep stopping I was about 15 steps away from the door when I had to rest. I called my mum because I was in so much pain and I had no idea how I was going to make it out the shop. I sat at the bottom of the mannequin thingy for ages and I was in tears, struggling to not fall and pass out.
I texted my sister and asked her to stop at home to get my manual wheelchair but sh only read the text when she was outside the shop. I called her and told her it all. my niece was asleep in the car and it turns out that once you get out the doors there is still a little ways to go to get to the road. My sister drove onto the paving (not quite a pavement but not a road) which is not exactly good. She ran in to get me, grabbed my bag, and my arm which helped me to spread my weight a bit so I was able to hop to the car.
When we got home I crashed and I mean CRASHED!!
I slept from 5 until 1 in the morning then from 3 until 11 in the morning. I overdid it and I knew I did when I was doing it. I was in a lot of pain and completely potsy.
Never doing that again.
I wouldn't advise it!
*huggles* for everyone!!!
We got to the nail place but we had to wait about half an hout and I said my mum should go first. This was silly because she was having one colour and I was having a design. Needless to say mine took a lot longer to do so when 2 o'clock came around I told my mum that she should go with my sister and then my sister would ome back for me.
My nails were finally done by 3.15-3.30 so I had to get the chair back to shop mobility very soon. I got a text from my mum telling me that my niece wasn't happy so my sister didn't want to go into the car park again; she wanted to wait outside Debenhams.
I HATED THIS PLAN!!!
I had returned the chair which meant I had to hop on my 2 gutter crutches, in my welly (which has a tiny heel and I am not used to ANY heel) to the lift which was a 2 minute walk but took ages to hop. Then I had to stand and wait for the lift. I went to the next floor and I had to hop from one side of Debenhams to the other.
The hopping was hurting my good foot, joulting my bad leg and making me floopy. I had to keep stopping I was about 15 steps away from the door when I had to rest. I called my mum because I was in so much pain and I had no idea how I was going to make it out the shop. I sat at the bottom of the mannequin thingy for ages and I was in tears, struggling to not fall and pass out.
I texted my sister and asked her to stop at home to get my manual wheelchair but sh only read the text when she was outside the shop. I called her and told her it all. my niece was asleep in the car and it turns out that once you get out the doors there is still a little ways to go to get to the road. My sister drove onto the paving (not quite a pavement but not a road) which is not exactly good. She ran in to get me, grabbed my bag, and my arm which helped me to spread my weight a bit so I was able to hop to the car.
When we got home I crashed and I mean CRASHED!!
I slept from 5 until 1 in the morning then from 3 until 11 in the morning. I overdid it and I knew I did when I was doing it. I was in a lot of pain and completely potsy.
Never doing that again.
I wouldn't advise it!
*huggles* for everyone!!!
Over Doing It At A Party
My sister's engagement party was on Sunday at my Uncle's house, my only job towards the party was decorations because I can't really help out any other way (I did WATCH my niece from time to time, but I could ONLY watch her, I couldn't sit on the floor with her or chase after her - back to the point).
Nothing was really going to plan... my sister left later than she planned but I couldn't go with her because I was having trouble getting my contact lenses in without a mirror (not that a mirror would help - I'm not vey skilled or practiced at putting them in) so my sister went to my Uncle's house with her friend to start setting up. My sister's fiancé came to get me and food whilst my mum looked after my niece until my sister came back for her. My mum arranged a makeup artist for all three of us, and the make up artist turned up as they were just starting to set up so my sister had to get her face done because neither me nor my mum was there yet. It took over an hour and a half to do her face because the make up artist was getting set up as she went along (so my sister told me it would've been better if I went with her anyway- everything is better when looked at retrospectively).
When I got there I couldn't get up there step as it was too high so my Uncle helped me by adding another step temporarily.
The party was outside, so I had to get down the step (which is A LOT easier than going up it), in the new marque we bought.
Their bathrooms are both upstairs so I went hours without using the toilet (not the best plan but there's no way I can do the stairs before let alone now with my leg like this).
The party was really nice and funny at times; it didn't rain but it was windy, so windy that the marque tried to blow away multiple times but everyone found it fun. We all held on to it to stop it from blowing away. We also didn't have enough time to set up so my sisters friends made it a game when we had to assemble out plastic martini cups.
My grandparents weren't involved in any planning for this party; they kept offering to pay for things but if they did then they would feel like they had a say in it. They asked if they could invite friends and when my sister said no they said 'we let them have up to 10 friends to their Bat Mitzvahs'. ARGHHH. It was OUR Bat Mitzvahs; everyone else we know had discos with ALL their friends and classmates there but we had to have a sit down lunch with all THEIR OLD PEOPLE FRIENDS!!!
Anyway, I'm going off subject. We bought the marque and mummy wanted to keep it for parties but, as their way of having a say, they promised it to my uncle (to which they had no right).
Throughout the whole party my Grandma kept making comments, picking at every detail and just generally ruining the party for my sister. Everyone else loved it, found it a laugh but NOT her.
I was given the job of official party photographer a few months ago but that was before my leg. I delegated some of it to one my my sister's fiancé's cousins. My sister wanted photos of all the food before anyone started eating which is when I delegated. The rest of the party I managed to fulfil my duties; I got photos of everyone that went and I was even able to get a candid photo of my sister and her fiancé kissing. I also took a couple photos of her getting her make up done (like people do for weddings).
Throughout the whole party I had to hold my leg out - making sure no one hit it at the same time. I, also, was given my lovely little niece a few times throughout the party. Once she was being a bit wiggley because she didn't want to be seated so I made an announcement selling her to the first bidder (I didn't put it that way but I should've). Nearing the end of the party I was given a stool to put my leg up on. AT THE END!!! Silly!!!
Later on my mum wanted to go inside with my niece and she asked me and my aunty to join her; this is where I was embarrassed, distressed and uncomfortable. I had to ascend the evil step; I tried to do it myself but I was struggling so two of the guests helped me (which was extremely kind of them) one person stood inside to help pull me up and the other lifted me up. I ended hitting my foot on the step and my knee bent... I was in a lot of pain but luckily the party was almost over so I didn't have to put a brave face on for long (not that I managed to do it at all).
When I got home I crashed. I was so tired which tends to happen when I over do it and go all potsy.
It was a lovely party though :).
*huggles* for everyone!!!
Nothing was really going to plan... my sister left later than she planned but I couldn't go with her because I was having trouble getting my contact lenses in without a mirror (not that a mirror would help - I'm not vey skilled or practiced at putting them in) so my sister went to my Uncle's house with her friend to start setting up. My sister's fiancé came to get me and food whilst my mum looked after my niece until my sister came back for her. My mum arranged a makeup artist for all three of us, and the make up artist turned up as they were just starting to set up so my sister had to get her face done because neither me nor my mum was there yet. It took over an hour and a half to do her face because the make up artist was getting set up as she went along (so my sister told me it would've been better if I went with her anyway- everything is better when looked at retrospectively).
When I got there I couldn't get up there step as it was too high so my Uncle helped me by adding another step temporarily.
The party was outside, so I had to get down the step (which is A LOT easier than going up it), in the new marque we bought.
Their bathrooms are both upstairs so I went hours without using the toilet (not the best plan but there's no way I can do the stairs before let alone now with my leg like this).
The party was really nice and funny at times; it didn't rain but it was windy, so windy that the marque tried to blow away multiple times but everyone found it fun. We all held on to it to stop it from blowing away. We also didn't have enough time to set up so my sisters friends made it a game when we had to assemble out plastic martini cups.
My grandparents weren't involved in any planning for this party; they kept offering to pay for things but if they did then they would feel like they had a say in it. They asked if they could invite friends and when my sister said no they said 'we let them have up to 10 friends to their Bat Mitzvahs'. ARGHHH. It was OUR Bat Mitzvahs; everyone else we know had discos with ALL their friends and classmates there but we had to have a sit down lunch with all THEIR OLD PEOPLE FRIENDS!!!
Anyway, I'm going off subject. We bought the marque and mummy wanted to keep it for parties but, as their way of having a say, they promised it to my uncle (to which they had no right).
Throughout the whole party my Grandma kept making comments, picking at every detail and just generally ruining the party for my sister. Everyone else loved it, found it a laugh but NOT her.
I was given the job of official party photographer a few months ago but that was before my leg. I delegated some of it to one my my sister's fiancé's cousins. My sister wanted photos of all the food before anyone started eating which is when I delegated. The rest of the party I managed to fulfil my duties; I got photos of everyone that went and I was even able to get a candid photo of my sister and her fiancé kissing. I also took a couple photos of her getting her make up done (like people do for weddings).
Throughout the whole party I had to hold my leg out - making sure no one hit it at the same time. I, also, was given my lovely little niece a few times throughout the party. Once she was being a bit wiggley because she didn't want to be seated so I made an announcement selling her to the first bidder (I didn't put it that way but I should've). Nearing the end of the party I was given a stool to put my leg up on. AT THE END!!! Silly!!!
Later on my mum wanted to go inside with my niece and she asked me and my aunty to join her; this is where I was embarrassed, distressed and uncomfortable. I had to ascend the evil step; I tried to do it myself but I was struggling so two of the guests helped me (which was extremely kind of them) one person stood inside to help pull me up and the other lifted me up. I ended hitting my foot on the step and my knee bent... I was in a lot of pain but luckily the party was almost over so I didn't have to put a brave face on for long (not that I managed to do it at all).
When I got home I crashed. I was so tired which tends to happen when I over do it and go all potsy.
It was a lovely party though :).
*huggles* for everyone!!!
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