>One week to go – feelings etc

>This time next week I will have been on my trip for almost twelve hours!!! I wonder where we will be or where we will heading to? Channel Islands I guess or maybe France… I can’t think we would get much further afield and get back to Southampton in the time we have.

I am pretty excited but also really nervous. It was really strange today leaving work because I am working tomorrow but won’t see any of the others who were there today until I come back from my adventure. What was also really strange was looking at the clock as we were closing (we close at lunchtime on a Weds) and realising it was 1pm and I was due to join the voyage crew exactly one week from then – to the minute.

A thought which pleases and excites me but which also makes me want to break down and cry and maybe even throw up.

>Twentyfive years and my life is still…

>Yes, this is a third update for today. I’ve been wanting to share this song since the weekend and figured I should “Just Do It” as they say on the Nike adverts. When I was in a huge stress on Saturday night about my powerchair breaking I posted on Yahoo! Answers asking about good songs for frustrating times. I got so many answers and they were all really quick… and I have Y!M so get instant alerts when I get e-mail to that account. It kept chiming one after the other for ages… that cheered me up a lot too.

You can read my question and the answers here and if you haven’t tried Yahoo Answers yet you should, it’s really fun.

Knowing that my wheelchair was out of action and (at the time) believe it was beyond repair shock me up sooo much. If you don’t use a chair it’s hard to understand. Honestly, it hut physically and took away my freedom so much that I felt like my legs had been cut off. My actual legs don’t work but take away my wheels and I can’t cope. I don’t know how I kept it together that night. I certainly couldn’t the next day!

Anyways the songs suggested are all great but one of them – What’s Going On by 4 Non Blondes – is an old favourite which I’d forgotten about. It strikes me as appropriate to my life, particularly at the moment and I figured I would share it here.

Twenty-five years and my life is still
Trying to get up that great big hill of hope
For a destinationI realized quickly when I knew I should
That the world was made up of this brotherhood of man
For whatever that means

And so I cry sometimes
When I’m lying in bed Just to get it all out
What’s in my head
And I, I am feeling a little peculiar.

And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream from the top of my lungs
What’s going on?<

And I say: HEY! yeah yeaaah, HEY yeah yea
I said hey, what’s going on?

And I say: HEY! yeah yeaaah, HEY yeah yea
I said hey, what’s going on?

ooh, ooh ooooooooooooooooh
ooh, ooh ooooooooooooooooh

and I try, oh my god do I try
I try all the time, in this institution

And I pray, oh my god do I pray
I pray every single day
For a revolution.

And so I cry sometimes
When I’m lying bed
Just to get it all out
What’s in my head
And I, I am feeling a little peculiar

And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream from the top of my lungs
What’s going on?

And I say, hey hey hey hey
I said hey, what’s going on?

And I say, hey hey hey hey
I said hey, what’s going on?

And I say, hey hey hey hey
I said hey, what’s going on?

And I say, hey hey hey hey
I said hey, what’s going on?

ooh, ooh ooooooooooooooooh ooooooooooooooooh

Twenty-five years and my life is still
Trying to get up that great big hill of hope
for a destination
mmh mh

>Small thing and how they make me feel.

>I got absolutely soaked to the skin today at sailing and shrieked with laughter nonstop for about half an hour.  It was really fun!  Spending the next two and a half hours in wet clothes, not so much.  Being snuggled up in a sleeveless T and PJ bottoms now?  Lovely, wonderful in fact.

Having proved that they were right when they told me that the boats I sail can’t be capsized even when they have tipped so one side is completely submerged and are full of about five inches of water is also reassuring but kind of scary too.  It does occur to me too that whilst the boat may not capsize my balance is crap and I could always falls out.

Having a really long conversation with someone who *gets it* – brilliant, just a shame it had to be cut short.

Being offered the chance to go away THIS WEEKEND sailing/racing with transport both ways included – wicked, especially when I was told I was the only member of the club who sails access dinghys that they considered sending.  Turning it down as an “I’d love to but it’s too short notice to make arrangements (care, accommodation etc)” sucks but does make me feel like I’m sensible.

Getting home to a note thru my door saying my carer had called and I wasn’t in when I had cancelled the visit – downright annoying :@.  In face it makes me MAD!

The news that not only is my powerchair repairable but the part has been ordered and was in stock.  Happy News.

Being given a £54.99 high spec buoyancy aid for free because the club would rather
that someone who was going to get a lot of use and who would be sensible with it Because of how it works you need to be sensible as it is a gas inflation one and can’t be used repeatedly once it’s gotten submerged.  This isn’t the exact one I have but is similar – I have the Automatic one

>I think maybe I rock and I know that I am very annoyed.

>Anyone know if you can call NHS Direct to ask questions along the lines of whether or not you can take certain OTC meds with your prescription ones?

So I got a taxi to the doctors today (£5 thank you very much that’s £5 I’ll never see again). My taxi was early and I’d booked it with plenty of time to spare in case it was late. I ended up getting to the doctors half an hour before my appt.

I had my book with me and there was a nice little suntrap right outside so I sat there reading for ten minutes or so. Then I figured I may as well go in because by some miracle I may get to go in early.

They had no record of my having an appointment. My doctors appointment is tomorrow she told me. I argued with her that no, that is with the nurse and eventually she said I was right about that. So I asked when my appt is? I don’t have one apparently. My GP wanted to see me again for review at the end of August/beginning of September and I made it for then. I even have an appt card with it written on (which unfortunately I didn’t take with me).

She didn’t know why I didn’t have an appointment and can’t find me another. She suggests that I make one tomorrow when I come in to see the nurse (when I will be taking that appt card!) because it will be “easier”. And when I mentioned that I need to be seen this week because I have to ask her what antinausea/travel sickness meds I can take on my trip given that I’m on baclofen, co-codamol and fluoxetine (Prozac) she suggests that if the nurse doesn’t know I can have a phone appt next tuesday to talk w/ the doc.

Uh… I’ve been told to start taking the antiemetics on Tuesday in preparation for the trip.

I was sooo frustrated that I knew it wouldn’t be healthy for me to get a taxi home. So I wheeled it in my manual chair. I took it slowly, stopping at the shop and briefly at my mums to chat w/ Soph as well as to gulp down some water a couple of times. I got home an hour and ten minutes after I arrived at the docs… I don’t know how long it took.

Multimap has it as a mile from there to here… I walked a slightly different way to their route in an effort to not go along the main road as their route did but ended up having to double back to the main road. Basically instead of going down then along. I went along, down part of the way. Then got stuck went back along that road to the main one… down there and then doubled back on myself so I was on the opposite side of the church where I’d been trying to walk along by in the first place! My powerchair might like the short sharp slope by the church but my K does not (or rather, my arms don’t!)

So I did just over a mile I guess. Yay for that!!!!!! I think I might just rock at manual wheelchair pushing when I put my mind to it.

But boo for silly receptionists who don’t record my doctors appts properly.

>Catching Up about lots of stuff

>Thought I would briefly update about lots of little things:

Pain

My neck and shoulders have hardly been painful at all today so I guess it’s healing at last.  I will be even more anal about the way I get moved in the future though. My “bad” hip has been giving me a few twinges lately but nothing majorly bad.

Infection

The antibiotics are doing a lot of good although I still feel kind of lousy.  No more lower back/kidney pain and I haven’t had a dizzy spell for most of they day so this is progress.  I feel a little more confident that this is just a one off thing and not a return of my chronic UTI issues.  The fact that this is my 5th course of Abx this year (UTI in Jan, Chest Infection in Feb, swimmers ear in both April and July and UTI again now) and that four of them have been cefalexin worries me slightly though.

Wheelchair

No news is just… no news.  I had a big huge crying meltdown about being powerchairless (and so basically housebound) earlier and have been headache-y ever since.

Mum is adament that they will be able to get a part of it but that it will depend if it is in stock.  She says that if it is in stock I might be able to be back in action by the end of this week.  I’ll believe that when I see it.  I still don’t really believe that it is repairable because it’s such a huge part of the frame that sheared off and I don’t have the pieces (have no idea where it happened either).

Work

Work is fine, going well in fact.  After this thursday I have almost three weeks off – the better part of a week before my trip, the five days I am away and ten days or so after I come home.  Yay for lots of time off!   Of course I am anticipating that I will be too tired to do much for a few days after I come home but still *yay* for my trip and yay for time at home to try and get this shitpit sorted out a bit more.

Only problem is I don’t know how I’m getting to work this week….

Diet

Managing as best I can with it.  I’m pleased with the weightloss but wish it was easier now than it is, particularly as it was easier before everything happened in the last month or so.  I should see the nurse again about that on Wednesday but may cancel it due to transport issues.

My trip

Dear lord that’s next week.  I’m getting very very excited but I also feel very very sick at the prospect.  I think I have everything I need sorted apart from gloves but will probably take some time tomorrow to have a sort through everything and check.  Mum and I have been arguing about whether or not I really do need to take thermals and longjohns as it says on the kit list.  I said no and was adament I wasn’t getting any.  She was adament I was.  I swore blind I wasn’t going to waste my money on them.  She swore blind that I am getting them and in the end said that she is going to pay for them.

I should really have refused to buy my boots they were much  more expensive – having her pay for them instead would have been a much better deal!

It’s strange how before April sailing was something that I thought wasn’t for me and I only went to shut Neil up.  Now I am hooked, go to the reservoir every week and am going tall ship sailing (hopefully to France!) for a few days.

Mental State

I have a med review tomorrow.  I don’t really know what to tell her.  I think I was doing well but then my Gran died and now it’s hard to judge.  I do feel as though the last month I’ve been treading water… everyone tells me that it’s ok to feel like this and it’s not my depression worsening but normal but I can’t believe that.  I wish I could but I don’t know why I can’t.  Also after my counselling session on Wednesday I am taking a break for all of September (because of going away etc) and then probably will go just once a month until the end of the year.  that isn’t 100% definite though.

>Festival Fun

>It’s festival time around here at the moment. The most famous one is Reading Festival and despite it being so close I’ve never been. However it wasn’t the only festival in that area this weekend.

I volunteered at the IWA Diamond Jubilee Festival today. I spent the afternoon helping out on the sailability stall. I was talking to people about sailing for disabled and also selling raffle tickets to raise money for the Pontoon Project.

I sold about 30 or 35 tickets (well, my dad helped me chase people down but I was in charge of the tickets and the finances) which I was pretty damn pleased about because they were £1 each. I got given an official volunteer badge thing to hang round my neck, a pontoon project airtex shirt and a gone sailing cap to show that I was an official raffle ticket seller. I was allowed to keep the shirt and cap and I promised to wear them on the Lord Nelson next week (dear lord, next week! argh, panic stations!).

We were there about four hours and I was on the stall for most of that time… Dad and I did go for a wander around for half an hour or so. We looked at a book stall (where I got six books for £2) and got some chips. There was a musical duo playing as I ate my chips and they were great. Their music was funny too and I couldn’t stop giggling!

We also saw a stall with dog and cat accessories and I tried to convince dad to buy Milo (his dog) his own rucksack so he can carry his own stuff – bowl etc – around and make himself useful. Nothing doing though.
I had a really really good time there and I was glad to go. It’s not something I would necessarily have chosen to go to if I wasn’t helping on the stall but it was somewhere I could have (and did) have a great time. I think someone said last year the festival was held in Cheshire – we were very lucky that it was held so close this year!

>Fuck it, fuck it, fuck it, fuck it [I hate CP]

>With apologies to my upstairs neighbours I have loud rocky angsty music playing… blaring out even and there kids are bound to be in bed. And it’s literally peppered with the F-word.

CP sucks sooooooooo much right now. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it. I hate it.

I ABSOLUTELY FUCKING HATE IT!!!!!!!!!!!!!!

And yet I wouldn’t be without it. Because the only other possible outcome would have been for me to have died and I don’t hate it so much that I’d rather be dead. I love living.

My powerchair is seriously broken. So seriously broken that I cannot use it. And whilst Mum says that we might be able to get a part and have it fixed, I seriously fucking doubt it.

I might have written a poem called “CP Rocks” and it might be what I believe a lot of the time.  But not today.

CP Sucks!!

>And now for something completely different…

>

I figured it was time we had something cheerful around here and that ticker certainly is that!

Ooooh pretty 🙂

and even more OOOOOOOH what an achievement!

*is proud*

And… lets talk inches:
Run away, run far away little inches and never come back!

Yes again that is a to size visual reminder.  Ooooh Impressive, huh?!

I go away in 11 days and I am very happy about the weight I will be when I go!  I would if possible like to lose another 2lb before I go so I can be a round 20lb down (or 90% Emma!) but I’m just grateful and pleased to be where I am right now.

Enough rabbiting, I think I better brave the drizzle and go to Sainsburys.

love, a very smiley and getting towards slim Em!

>On why I protected the last post

>Basically the previous post is protected because I know that a couple of people vaguely involved with the situation read my blog occasionally.  And also I don’t want random strangers reading it.  It’s not a big deal just a me ranting away about something and being paranoid about who is reading that particular rant.

If I am happy for you to read I will give you the password.  Basically if you’re not Sair, Shi, Chana or Soph you’re not getting it but you can ask and I might give it to you.

I still feel relatively crap physically but less crap than I did so life is better.

>Heavy Thoughts

>My care agency suck.  I am giving serious thought to requesting copies of all records they hold on me and will almost definitely be pursuing other options to provide my care.  This entry is passworded for the simple reason that at least one of my carers (that I know of) reads my blog.

My various complaints:

I made a verbal complaint some time ago about a carer which ended in the agreement she would not be sent again.  She was sent again and when I again rang them and pointed out this they had no record of my complaint.  Both times I spoke to them about this carer I was told “That’s not like [carer]” and how she was a popular carer.

They are supposed to write to me to inform me when trainee carers will be coming to shadow.  I have never received a letter, always just had it sprung on me.

My contract with them states that they may vary the time of my visit by 15 mins without letting me know (traffic time, basically) and if my carer will be later than that they will call me.  In two years with the agency (almost)?  They’ve done it about twice.

I have told them that I rarely get home before 4.30 and asked that my carers are scheduled to come no earlier than 4.45 – because this means the earliest they can come is 4.30.  I usually finish at lunchtime now but haven’t told them that – my care visit for this Wednesday is scheduled for 4.30 which means it’ll probably be around 4.15.  I won’t be home till 4 at the earliest.  Stress.

I made a written complaint about another carer (written only because they forgot about my verbal one) – I know they received it because Sara delivered it by hand.  No response.  I had a monitoring visit and raised that point to be told that a voicemail had been left on my mobile for me to call them.  Everytime a voicemail has been left for me to call them I have and it has never once been about that complaint.

I asked for an additional visit yesterday (emergency visit) so that someone could fetch my drugs for me as I was too poorly to go myself.  I was told it was very very diffciult for them to do as they were short staffed and it would be easier and better if I could wait till my usual visit.  I was basically guilted into agreeing to this.  Yet I have had to have late visits several times lately because they have gone to other clients for emergency visits.  And they state that medication visits are a priority to them.  No apology either.

They have a page of notes on me they give to my carers (kind of an About Emma sheet).  I have read it and do not agree with some of what it says.  It is also out of date and doesn’t include some information I consider important and which would save me a lot of hassle. I also wrote a rough schedule of what I wanted doing when and asked that be included.  It hasn’t been.   I’ve decided that I want to write my own version with no patronising statements – it currently starts with “Emma is a delightful girl who enjoys a chat” – and only relevant information.

So I mentioned it to two of my carers and they said that I am not supposed to have seen my client information sheet.  One of them told me there was a reason but she couldn’t remember the term – it was like confidentiality.  Obviously that doesn’t apply to info about me when it comes to me!  The other said that basically it’s because some people’s info sheets say nasty stuff about them.

There is this fill in carer, I find her argumentative and I also know that she told one of the coordinators that she “never met a more ungrateful, untidy little madam in her life” referring to me.  She was scheduled to come to me next week.  I cancelled the visit.

Another carer is basically out of her mind and shared all of this really personal and quite worrying stuff with me, asking my advice.  This is not someone I know well and basically stemmed around the idea that she met a girl on the internet, fell in love with her and was then told the girl had been kidnapped, gangraped, held hostage and murdered.  Did I believe it was true, what should she do???  My main carer wrote a report and made the coordinators aware of this and my disgust at her behaviour – particularly as I was having a BBQ and soph was here at the time – but again I  heard nothing.

My actual carers are great and a lot of these I could ignore but it’s too much all at once.  Particularly the ignoring of written complaints and the not having a right to see my records.  I think that is outrageous and I think I need to do something but I dont know what!