>The Crip and The Casts

>I tried yesterday to post a video blog from my shiny but for some reason it won’t upload.  I will endeavour to cover the main points and do so quickly as I have hospital transport coming and was told to be ready at 9.15 (8.44 now).

Casts went on Monday.  that day was a huge struggle and ended in a crying, shaking, sobbing, puking meltdown that necessitated my calling my Mum round at 11:30 pm and unfortunately getting her out of bed in the process.  Basically I couldn’t get out of bed without help, I got my skirt all tangled up, couldn’t get it up or down and it was catching in my wheels, it was too hot and the casts were a little uncomfortable due to the stretch and when I’d tried to transfer into my powerchair earlier that day hadn’t managed it meaning I thought I’d be housebound.  Mum got me sorted out and left a little after midnight I think.  She came back round at 6am to get me up for the loo again and then I went back to bed (definitely needed the rest!) and Dad came in at 9 on his way to work and helped me up.

We’ve managed to solve the bed problem by putting the mattress from my old bed on top of the one on my new bed which means I have a ridiculously high bed but I can get out of it without help!  The loo I was also finding a little low which is strange as both it and my bed are an easy height usually.  I keep a toilet surround (with bars and a raised seat) at my parents house and my sister dropped that in for me.  Tuesday and yesterday I was able to transfer into the powerchair with help and as I’ve gotten used to the casts have been finding that easier and can just manage it solo now.

When I left the hospital on Monday I was given paperwork with instructions which included going to A&E if I had any problems out of hours (and a letter to take with me).  I’m sure that if I could have found someone to take me I’d have gone Monday night, at the very least I was adamant that I was going back to the hospital first thing Tuesday and kept saying I couldn’t do it.  But it didn’t come to it and it’s been a struggle at times but it’s been OK.

I saw my GP about something else yesterday (for which she gave me some lovely Erythromycin meaning I am once again on two antibiotics) and she told me that the hospital hadn’t even told her they’d seen me let alone that I’ve been multiple times and what they were doing to me.  Don’t think she was best impressed.  I wasn’t surprised she didn’t know all of it as my consultant rang me Monday afternoon to say he’d not made a note of what we’d agreed and what plan had been made for going forward and could I tell him? But i was surprised she hadn’t even had a “we saw Emma for physio and are sending her back to wheelchair services and to the consultant” type letter as I was first seen practically a month ago!

Apparently my casts may come off and stay off today.  This would be if the treatment was complete (unlikely I think based on what was said on Monday) or it was considered to have failed.  I think I knew deep down that it could fail but I’d not really thought about it and considered that.

Yesterday I didn’t need as much help, just my Dad to come in and help me get dressed as I got one leg in my knickers and couldn’t maneuver the other… which was fine as the possibility was planned for and I got up and got washed so I’d be getting dressed at a time he could be around.

It might be early but I’m kinda sleepy – I have some cast protectors but just in case they didn’t work I didn’t try them until this morning.  Mum came and helped me shower but in order to be at work in time had to come at 6.30am.

>A Few Days On

>Not quite a week since I had the botox (tomorrow will be a week) and I think my ankles may be a little looser.  This is a very good thing.  It’s about the right timescale too as the physio said it takes 7 – 10 days to kick in.  I’m not 100% sure that’s the case, I need to get a second opinion from my dad, but it’s looking good.

The first lot of casts go on on Monday.  I’m feeling a lot calmer about that now but it’s still going to be very different and possibly difficult.  I’m just hopeful I get a good result out of this.  As I’ve said to a lot of people this is going to be a long process. It shouldn’t, however, be painful which is another very good thing.

Once I’ve been on Monday I really ought to start sorting out a social services referral as when I’ve got my splints I’ll need carers to help me get them on everyday.  I want to find out what timescale is involved first (e.g. immediately after the casts come off or if there will be a delay before I see an orthotist, if indeed, I need to see an orthotist but I can’t imagine I don’t) and also if these will be day or night splints. The prospect of carers again stresses me out.

I think the problem is that Oxfordshire Social Services provision being what it is I believe it highly unlikely I’ll get anything other than 15 minutes a day to help with splints and all the other things I’ve been struggling with and just about managing and even not doing since my funding was cut in 2007 will be left.  My previous experience of agency carers is that there are a lot of niggles involved and the level of funding I’m likely to get would mean a direct payment is impossible because no one is going to work 15 mins a day.

>Meds and Such Like

>I think it’s safe to say that at the very least I need to go and chat to my GP about my depression.  I’m much better than I was when my antidepressant was changed to Sertraline but I’m still struggling a lot at times.  That said I don’t necessarily think I need it tweaking again but I’m not sure and I need to keep an eye on these things.

And when I went to the physio she was talking about the possibility of changing my muscle relaxants.  Either an increase of my baclofen or taking something else (which said could be instead of or in addition to the baclofen).  I’m back there on Thursday to chat these things through.  That was quite interesting though because I’d not heard of one of the mentioned meds being used for spasticity and I know of loads of people who take it.  And she also queried whether I was taking anti-depressants for depression or spasticity as apparently some anti-depressants can be used for spasiticity as they relax you.  I’d never heard that before but it’s an idea I’m quite interested in.  If I don’t come back without a drastic increase in my baclofen or an extra prescription I’ll be very surprised.

The physio has also referred me back to wheelchair services as she says I either need this chair adapting or a new one as it’s totally unsuitable and she thinks part of the cause of my pain.  Wheelchair Services however are saying I have to go back on the waiting list which has an average wait of 18 weeks.

She also advised me to go back to social services and asked to be reassessed for care needs, specifically for help with socks and shoes.  I’ve not done that yet.

A few other things were mentioned as possibilities so I came back with lots to think about which is part of the reason I’ve been so quiet on this blog.

Oh and she told me I should be leaving my wheelchair in a different position (equivalent to where it would be for a lateral/slide board transfer) when I’m standing and transferring.  Getting the hang of that is not proving easy at the moment!

>Imagine You’re Four

>This post was written by Kaliya Franklin and originally appeared at Benefit Scrounging Scum.  It’s reposted here with permission

Imagine you’re four. You love your parents, your friends, the way the light comes through your curtains early in the morning, twinkling on the walls while you wait in your princess room patiently for mummy and daddy’s wake up time. Your favourite things are pink ballons and fairies, when it’s all a bit confusing around you you know you’re safe as long as you can catch sight of those pink flashes and know mum and dad are close. You love to give cuddles, hugs so tight there’s no room to wiggle and when you get excited you rock back and forth from foot to foot, arms spiralling joyfully.

One day a new clipboard lady comes to see your mum and dad. You see them cry and decide you don’t like this clipboard lady, you wonder where the clipboard lady you remember has gone. Mummy and Daddy are sad so you hug them then fling yourself to the floor and scream so the clipboard lady will go away. It works so next time you decide to scream louder and kick your feet harder to be sure she’ll go before your mum and dad cry.

Next time the clipboard lady comes with lots of other people to take you away. Lots of big words you don’t understand like ‘aggressive’ ‘confrontational’ and ‘care order’ float around the room and you can’t see your pink balloons so scream and scream. Mummy and Daddy cry and tell you to be a good girl, that you’ll love your new home, it’ll be full of your favourite things to do, they’ll come to see you soon.

When you get there it’s all scary and wrong. It smells funny and the light doesn’t wake you up in the mornings anymore. No-one knows you like to be woken up by the light and they wouldn’t care if they did. The days are long, no painting or ponies like you’re used to to fill the time and no-one comes to give you cuddles when you’re sad. You cry alot and have tantrums. You’re used to pink balloons and fairies when you have a tantrum, but without being able to see that you just kick more wildly, especially when the carers come to sit on you and hit you.

You might be only four but you can remember the important things Mummy and Daddy spent 18 years teaching you. You know how to hold out your hand and say ‘NO!’ in a loud voice if someone tries to touch you, to say the police will come to look after you, to call out for your Mummy so she knows to come to you. Mummy and Daddy were so proud of you for being their big girl and learning these skills, you try to remember that as you lie on the floor of your shower, surrounded by grown ups shouting at you, throwing cold water all over you, sitting on you and choking you. You cry and cry for your Mum but it just makes the carers hit you more. Sometimes the nurses come along and you look at them while you’re on the floor, pinned beneath a chair, but then someone puts a blanket over your head so you can’t look at them anymore. The blanket’s brown and scratchy and you cry for your pink balloons while they hit you some more.

You don’t get days out anymore. There used to be a car and Mummy and Daddy took you places with swings and slides. Swings, slides, light through the leaves and being happy slip further and further away until you’re not sure there was ever a world beyond beige walls with no pink to hide in to bear the slaps, pinches and pushdowns that are your new routine. You’re sure you remember your parents though and cry for them every day. You don’t know the reason they can’t come to visit is that now you’re a hospital resident 80 miles away from home and the car had to go because you’re no longer entitled to the mobility component of Disability Living Allowance and the Motability scheme. Mummy and Daddy are getting older and they had to care for you instead of going out to work. You don’t know they’re going cold and hungry now they’re unemployed not carers, you only know that no-one comes to see you except the people who hurt you.

You don’t know someone in the hospital did care. That they reported the abuse you are experiencing repeatedly. To their manager, to their manager’s manager, to the Care Quality Commission. You don’t know because no-one did anything, nothing ever changes now, the torture is your daily routine. You don’t know the word for torture, but you could give a better account of what it means than a prisoner in Guantanamo.

You don’t know that in the world outside your torture chamber that people talk alot about double funding, scroungers and fraud. Of something called a deficit, the need to cut costs and protect the vulnerable. You don’t know that because all the talk is of stamping out fraud and you’re so vulnerable no-one knows you exist.

>Perspective and a refreshing carer experience

>Quite a lot of the other wheelchair users who live locally to me I know, at least to say hello to if nothing more. I keep seeing this guy around in a chair who I don’t know but his chair catches my eye as it’s covered in stickers and its red and it has an unusual control (or at least I’ve not seen it before).

Today we were both on the train to Reading so I got a chance to chat to him and his carer. Mostly me and his carer doing the talking, you know what it’s like when two women with a common subject (disability/carers) get together.
B, his carer, really impressed me with her insight into the carer role as my experience has been a lot of carers don’t see the bigger picture of it. One of the comments that was really refreshing was about how carers can end up taking away a level of independence from their clients because of the tendency to go “I’ll do it, it’s quicker” and also to just take over. The other side of that, of course, is that people who have carers can sometimes find it easy to go “the carer’s here they can do that.” I’ve not met many carers who are good at stepping back and waiting like that (of course whether she actually is good at that I don’t know, but…)
I was also impressed that she didn’t tell me all the personal details of the guy she was with (she introduced herself and him and basically other than following up things he said – innocuous things – said nothing about him) because I’ve had so many carers who have gone “you wouldn’t believe the person I was just with…. and at least one time I had a carer who stood there and slagged off how much she hated her next client to which I went “you shouldn’t tell me that it’s meant to be confidential” and when she went “but you don’t know who I’m talking about.” I was able to go “oh your next client isn’t [her next client’s full name] then? because it was a friend of mine.
B was asking me about if I live alone and do I work and was I travelling by myself and she kept saying “Wow!” which actually was quite interesting for me as I tend sometimes to think I’m not doing so great with the CP and doing stuff. But she kept saying “you don’t let the wheelchair stop you then” which made me realise how much that’s true – I’ve always known it’s true but when I’m surrounded by able-bodied people doing so much more and also a few friends with disabilities whose limits are different to mine it’s easy for those sort of home truths to get lost in the wash so to speak.
That’s twice lately people have shown that they view my life in a different way to I do – a more positive way – and helped me to get a new perspective on things. I do find it very interesting getting these kind of wake up calls.

>Change is coming

>After Friday I won’t be having carers any more, I gave the agency one weeks notice last week that I won’t be needing them. 

It’s been a decision I’ve been considering for some time (and maybe should have made sooner) and it’s definitely the right one.  I must admit however that it does make me a little apprehensive and sad because there have been a lot of niggles and there are many reasons why this has to happen but there are a couple of people involved I will miss.

I’m going to be getting a cleaner but that isn’t sorted out quite yet… I need to get a couple more quotes to compare with the one I have/cost of getting a different care agency.  The rational sensible person in me had planned to properly investigate costs etc and then decide if getting a cleaner or keep having carers was the better option and get it all set up and ready before making any changes.

Then the impulsive side of me kicked in and I got so angry and annoyed and frustrated with the care agency.  I decided enough was enough, and just gave them notice.  Which totally works out as being the right thing because if I’d waited to get it all arranged I’m not sure it would have happened… still not overally happy with certain things that happened but it’s in the past and after this week I don’t have to deal with them again.

And having a cleaner as opposed to a different care agency is the right choice for me right now… because they know the jobs I need to do, they don’t know disability.  So disability gets taken out of the equation and I shouldn’t have to deal with all the crap that goes on from that point of view with carers.

If it doesn’t work out, it doesn’t work out.  But for the time being this is something I have to try.

And changing the subject slightly, although I don’t want to go down the route of another care agency I did spend some time reading up on other local agencies on the CSCI website.  Where I discovered that the CSCI do not have the power to investigate individual complaints.  Which really makes me wonder why their called the Commission for Social Care Inspectorate or even what the point of them is.

>Angry Girly

>I am angry right now.  I won’t go into too much detail but lets just say tonight is going to be really frustrating and tomorrow all hell may just break loose.  Not least because this is an issue that I have visited several times before (including in November) and you’d think the message would have got through by now.

Obviously not.

So angry.

>More on Gossip.

>My mum thinks I am overreacting by getting mad and saying that my carers are gossiping about me.  She doesn’t read my blog but I told her about it.

Basically, the two latest new carers have been discussing me (between themselves and with a member of the office staff as well as in front of at least one other carer so far as I can tell).  The third carer who this was all discussed in front of told me all about it yesterday.  But tells me she said nothing.  I do believe that.  I know of two things that were said about me based on what I was told.

Obviously I don’t know exactly what got said but it strikes me that one of the things there was no need to say at all because it doesn’t really serve much of a purpose.  I’m a naturally disorganised and messy person, it’s how I live and I’m happy like that.  But apparently the new carer has made comments about my house being a tip.

The second comment relates to the making an issue out of nothing incident of a few weeks ago.  And whilst I do understand why that carer raised it originally she went well over the line of what is appropriate.  And mentioning that to other carers annoys me, especially as from what got repeated to me a lot of the context/explanation I gave her got left out and just the “sensational” part was passed on.

Again, I’m going on what someone told me so I don’t know exactly.

Carers will always talk to each other about their clients.  And they will always (or should, rather, as it doesn’t seem to be happening) be briefed on thier clients.  I’ve believed for a long time that most carers don’t understand the emotional price people pay for needing them or the importance of confidentiality (and the way it should work) meaning there is no such real thing as client confidentiality in such positions – and I work generally on the principal of don’t want it repeated, don’t tell a carer.

Gossip is just a normal part of life.  I personally believe that carers should pass any information or concerns on to the office staff who should decide what to do and carers shouldn’t tell other carers.  But to be honest I’m more annoyed and bothered that I was told about it.  I’m not naive enough to think this has never happened before.  I just didn’t know about it.  So I didn’t have to deal with that knowledge and the way it made me feel.

Mum says I should let it go and she’s right but it’s hard to do.  I couldn’t explain why when she asked.  I’m just left with the feeling that based on what I was told was said about me people will think I’m some sort of spoiled brat.  And like they are making value judgements about me based on the way I chose to live.

>Hi. I’m Emma.

>I had a new carer this evening, something I suspect will be happening a lot in the next few weeks as my regular carer of the last several years moved away at the weekend.  It went a lot better than I expected, I was very nervous, but it was ok.  I’m looking forward to Friday, however, when I should have someone who last did my care more than three years ago (by my count) but who I always got on well with.  Familiar faces are always good even if there will be a lot of the new carer things like showing where things are as well.  Those are always easier to cope with when I know the person however.

Two things strike me about having a new carer tonight.  One slightly serious, one just amusing.  Neither are specific to this new carer alone, I’ve had them happen before.  I was just reminded of them by her this evening.  This entry is not intended as a dig at this new carer.  If I ever see her again I think we will get on well.  My care agency do have a habit, however, of sending me someone and I don’t see them again for about six months.  As I no longer have a regular it’s less likely to happen, IMO.

1) A lot of the clients they go too they give or prompt medication.  I was under the impression that was because a lot of the clients in question can’t/won’t/forget to take their meds.  Obviously, I self medicate and my carers don’t do that for me.  But tonight for not the first time I got asked “am I supposed to give or prompt any meds?”  

Now, fair enough this carer didn’t know and it’s better that she asked rather than just wondering.  If you ask me however (and you didn’t but it’s my blog…) that’s actually kind of dangerous.  If the reason for the assistance with meds  is due to memory loss or difficulty in knowing when/how to medicate for example (to say nothing of noncompliance) and the carer is sent in not knowing if they need to do this well it’s just a mess which could result in either lack of medication or overmedication (either situation could be potentially very serious).  It’s a situation which Elizabeth has written about many times with her carers.

Obviously it’s a training issue and it is one that doesn’t apply to me.  But it’s one that really gets my back up because I have some very good friends who need this support and maybe aren’t able to advocate for themselves for well.

And that leads me to point 2) of the things I thought of after having a new carer this evening.

Once, a very long time ago, there was a carer sent to me by this agency who didn’t know my name – she was sent last minute and just given an address.  Ever since then I’ve made it a point to tell new carers my name when they introduce themselves.  They should be given an “About Emma” sheet the coordinators wrote before they come (although its crap and very out of date in my opinion) which covers what they do and stuff like that including what you prefer to be called.  It doesn’t seem to be getting dished out but to be honest, talking to them about writing my own is on my to do list (tentatively I’ve heard they won’t let me write one to replace theirs but they will let me write an additional one but I need to check that with the powers that be).  I’m not supposed to have read their sheet but I have and it’s… amusing. In an annoying sort of way.  Apparently “Emma is a delightful girl who enjoys a chat.” I’ve been campaigning for years to have that replaced with “Emma is a stroppy bitch” but nothing doing.

Anyway just as this new carer was leaving today after being here an hour she went “What’s your name?”  All they’d told her was I was Ms Crees.  I could swear I’d replied to her “hi I’m…” with “oh hi I’m Emma” but maybe not.

Still, it’s not really surprising that she didn’t know what she was meant to do for me with regards to meds (or rather not do) if they didn’t even tell her that I’m Emma.

So, just in case there was anyone here who didn’t know my name.  Hi. I’m Emma.

>Poor little crippled girl

>I had a new carer tonight.  For so long now I’ve just had the same person that having someone completely new (and having someone who rarely does my care as I did last week) was strange.  Time was having new carers was my normal and I had my “new person” speech down to a t.

Now?  Not fun.

Didn’t help that several of her comments had me convinced that she saw me as a “poor little crippled girl.”  In fact at one point I disagreed with her over something and said “you’re looking at that from the point of view of ‘she’s a poor disabled girl'” which she denied.  Points being that it is “disgusting” I don’t have funding from social services, do my parents help me out at all (I said not really I don’t need them to often and having carers is better), do I see many people and do I get out often.

 I didn’t want to use my usual phrasing (the above) because I knew she wouldn’t get it and sometimes I just get so annoyed and frustrated being someone who people don’t get.  Usually that can just wash over me and I get on with it regardless but it’s happened a few too many times over the last sort of ten days two weeks. So it was best avoided.

Oh and when explaining why she became a carer she said it was because she got on well with people and she gets on well with disabled people too.  Because, clearly, we are some whole different species to the rest of the world.

Very frustrating.

But still better than last weeks comment of “your Dad must earn a lot of money.” when I made some comment about my parents being away last week (again in response to a question about why my parents don’t help me out more – as in do my support).  I just gave them a very pointed look and said “I wouldn’t know, it’s none of my business.”

As is always the way, after the event I mentioned it to a friend and she came up with the best response – just too late to use it.  She said I should have said “Why? Did they ask you to contribute to the cost?!”  I’m remembering it for the next time.

Because God only knows they’ll be one.  There always is.