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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!!!

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.

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.

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.

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!!!

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!!!