Bureaucracy is disabling me.

Ok, bear with me, this could be a bit whiny and it’s probably going to be longer than normal.

I take meds four times a day; morning, lunch, 4pm and 7pm including controlled drugs at morning and 7pm and liquid morphine as and when I need it.

About a month ago, my care agency told me they absolutely cannot keep doing my meds. By which I mean, transferring them from the weekly blister pack which I can’t get into to the little daily meds box which I can open. This also means I only have to carry one day at a time each time I leave the home. And we can also add in the controlled drugs which can’t go in the blister pack. All seems sensible to me. Except transferring meds, or leaving them for me to take later, is secondary dispensing and that’s not allowed.

So, being a problem solver, I started trying to figure out how we fix this. And I’ve thought and thought and there are no sensible options. I’ve been shown a telecare medication dispenser. Which to be fair, would give me (some of) the medication without carers having to get involved. It couldn’t dispense the controlled drugs or the as and when morphine.

It is also huge.

And I would have to take the whole thing with me if I wanted to leave the house over meds time (you know, to do something wild like go to work).

As I can’t get it out my bag I will still need help taking my meds.

When it’s time, it’ll beep away until I take the tablets. Which is great if I happen to be in a meeting – sorry, don’t mind the beeping, could someone grab the giant meds thing out my bag as I can’t do it myself – nothing like having a giant sign on your head saying disabled.

I’ll also have to carry about a week’s worth of meds if I go out which will be great for thieves – nice stash of tramadol there…

It will need filling weekly which means I need to be home at the same time each week so the pharmacy (there’s only one which will fill it) can drop a filled box off and take away the old box. But that’s ok because I’m probably going to be tied to my house by the meds box anyway…

Plus the controlled drugs can’t go in it.  That’s ok in the morning as my carers are with me but they aren’t currently at 7pm (they do 5.30-6.30 as that’s when I have my tea, any later and I’m too tired and can’t be bothered and anorexia says nah, not tonight).  And I’ve just heard from the social worker that they wouldn’t extend my evening call.  So I would have to have 6-7 instead meaning I will struggle with my tea and I’ll be going to bed straight after I’ve eaten (I’m in bed by 7.30 at the latest).

And there’s the as and when liquid…Even if we can replace it with a tablet, I still won’t be able to get it out of the packaging. And I take it any time of the day or night. 3am is not unheard of… In fact the middle of the night and when I’m at work are the most common times for me to take it…  One of the ‘solutions’ social services suggested was that I get my team to dispense my medication.  They do at the moment because we haven’t got a choice but it’s not appropriate and I can’t rely on them being there or me being with them at the right time (you know, meetings and such get in the way).

And social services keep saying it’s not their responsibility… it’s health’s…

I’m off to see my GP with my care manager on Tuesday… I have a sinking feeling they will tell me it’s not their responsibility, it’s health’s…

Wish me luck… the alternative is i have to be at home 8am,12pm,4pm and 7pm unfailingly and having my evening meal screwed up.

Advertisements

Audiobooks

2015 might be the year I finally got to grips with audiobooks. In particular, kindle whispersync. This let’s you switch between reading on your Kindle or kindle app and listening to the audio version. You can follow the text with the audio so i think it would be really good for early readers. One of the reasons I struggle with audiobooks is loosing my place and with this, you can flick through the text which I find much easier than trying to rewind an audiobook. Often when you buy a kindle book, the audio version (if available) comes at a reduced price.  Also, it lets you read, then listen then read so you can choose whatever is most appropriate at the time.

I’m sure you’re all aware of audible but if you aren’t fussed about having a linked text and audio book, check out your local library. At lot now offer ebooks and audiobooks which you can download at home straight onto your device.

There are also charities who lend audio and e books although I haven’t used any yet:

image

Ps. I’m loving Robin Hobb at the moment!

Branding!

I finally have branding!

*drum roll*

Blog-header

Unlocking-images-for-web

Business card back final

Thanks to the awesome Meg at That Hummingbird Life.  I sent her the vaguest ideas and concepts and she created such a lovely design for me and was patient as we bounced it between us a couple of times.  but right from the start she had got the idea spot on, just leaving a bit of fine tuning to be done.

Not only is she awesome at design stuff, but you should check out her website as well as her sunday weekly self care check in emails.  She is actually the first newsletter I’ve ever replied to.  And she was so friendly when she replied that I was inspired to reply to another person (who never replied…).

Also she’s included me as a guest post, even more reason to check out her site!

My blog will be updated with the new logo etc once I’ve decided on a new layout as this one doesn’t look right with the logo…

December Reflections

It’s been a bit quiet around here but that doesn’t mean I’ve not been getting on with things… I’ve been working with the wonderful Meg from That Hummingbird Life on branding for my blogs and my shop (eek!), I’ve also been taking part in Creative Courage and art journalling etc.

I’m also participating in Susannah Conway’s December Reflections.  Admittedly, not quite in the intended way.  Instead of taking a photo a day, I am looking back at my photos from 2015 and choosing one from there instead.  I’m posting these over on unlockingimages if you want to follow along.

I think so far, the biggest thing I’ve realised is that 2015 has gone by incredibly fast but also so many things have changed for me.  Back at the end of February I was embarking on a trip to Cambodia, sitting at the train station with hot chocolate on my own.  Now, I can’t leave the house without someone with me to get the wheelchair out and lock up.  I’ve gone from desperately not wanting to move out of my flat to wishing for any goddamn accessible place to live.  I’ve gone from working full time to struggling to work three days a week.  It’s been a year of change, that’s for sure.

Crafternoon in photos

There were cakes…

DSC_0166 e

…lots of cakes…

DSC_0169 e … and magazines for reading or crafting or buying… DSC_0170 e

…along with a lot of books for sale, with money going to Mind…

DSC_0171 e …and crafting in various guises… DSC_0174 e

If you want to hold your own craft afternoon for Mind, please check out their website for more information.

Mind provide advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding.

Being disabled is a full time job

So, as I’m sure you’ve heard, the government are putting pressure on disabled people to work. Perhaps if all the bureaucracy around being disabled were easier to manage it might be more realistic.  Let’s look at a week in my life balancing being disabled with working:

Monday: day off. Wake up at 8.30. Carers are with my 8.30-9.30.  Carer comes back to my physio appointment at 12 which means leaving at 11.30 or earlier in order to get a blue badge parking space at the hospital. Physio appointment includes prejudice and inappropriate treatment.  It wipes me out and we get home by 1.30.  I’m supposed to meet with CQC inspectors at some unknown time today about my care agency.  They never turn up. Carers are back 5-6 and then I’m asleep by 7.30. At some point I needed to ring the taxi company that take me to and from work because taxis keep failing to turn up. Add onto that my dislike around phones and that simple task becomes huge. I also needed to speak to my social worker about social housing.

Tuesday: work (I do work 3 days a week). Wake up at 7.15. Carers 7.15-8.15.  Taxi due at 8.15. Most of the time it’s getting on for 8.30 before it arrives. I have to wait outside because I use my wheelchair and I can’t get it into my house. This leaves me cold and in increased pain before I’ve even got to work. Finally get to work, which isn’t as accessible as it should be. Battle people’s prejudice in the work place. The struggles around actually being in work (despite numerous access to work assessments) is a blog post of its own. Go home. Or I would if the taxi turned up… Carers are waiting for me when I get home and leave at 6.30.  Bed by 7 on a work day.  Exhausted. In pain.  On work days I basically do nothing except attend work.  I have no energy or spoons or time for anything more.

Wednesday: day off. Carers 8.30-9.30.  11-12, seeing my cpn. She has to come to my house because the place she works is inaccessible. I find appointments quite tiring.  After lunch and resting a while I then chase up my wheelchair appeal. I also have to sort out seeing a house with my social worker which involves ringing the taxi company again. Carers are back 5-6, I’m asleep by 7.30.  Days i’m not in work I will try and get something creative done, depending on pain and energy levels.

Thursday: work. See above.

Friday: work. This is the hardest work day because I’m still exhausted from Thursday.  Before I start work I have to see my psychologist so i don’t get to work till 11am.  Thankfully my work are incredibly good to me because this is 2.5 hours a week when I should be in the office.

Saturday and Sunday: similar to my days off but Saturday is hair wash day and Sunday is body wash day.  Both are exhausting and painful and take a lot of time.  I can’t get into my bath/shower so we have to sponge wash me.  It’s cold and undignified.  If I want to go out, I have to do so when my carers are here because I struggle with my locks.  On a good day I can manage them once in the day so they either need to be there to lock up or unlock.  On a bad day I can’t manage the locks at all.  I also can’t get my wheelchair in my house so going out means I have to get a carer to put it outside or I have to struggle to get it out of my shed.

In addition to the above, I need to do regular physio, all the normal life admin, manage meds, sort out mistakes in care rotas, go to regular gp appointments, sort out benefits etc etc. All whilst exhausted, in severe levels of pain and battling mental illness.

Because my pain is getting worse, I’m struggling more and more to actually make it to work on those three days.  In addition, getting cold whilst waiting for unreliable taxis and having to chase taxis and argue with the taxi company (yes I did book a taxi…) makes me start to wonder if it’s really worth the amount of mental and physical effort work takes out of me.  Just getting to work in the morning can be a feat of its own.

Not all my carers are bad!

I just wanted to balance out my recent carer related posts.  They aren’t all bad.  Within my care team at present I have one crap carer, one ok carer and one really good carer.  I also have a really wonderful ex-carer who unfortunately had to leave because the hours she was getting were completely incompatible with her life.

But I still see her.  She popped round for coffee this week, bringing with her flowers and thoughts about going Christmas shopping and to a spa together.  And the really good carer is amazing.  We’re really in tune, we’ve talked a lot about my mental and physical health stuff and having her with me, regardless of what we’re doing, is really comfortable.

Getting the right carers can make a huge difference to your life and I know that without any care, even bad care, I would have no quality of life any more.

_20151109_154958