What have I become?
flowerpotgirl

Just had someone here from Social Service and I want to cry.
Not because she was bad, but because she was understanding and helpful and a little part of me expected her to ask why I thought I was entitled to anything.
And because you never picture yourself like this, housebound and permanently exhausted.
And because she made me feel that I should be asking for more, rather than the DWP who act as though you have no right to anything.
And things have been rough for the last 5 weeks, stuck upstairs and mostly bedbound.
And because I managed on my own as we now have a key safe so she let herself in
And because getting dressed earlier, walking the few yards to my sitting room and then talking for an hour has left me shattered, but not able to go back to the bedroom for the minute.
And all that leaves me an emotional wreck.
But she suggested a daily carer to get lunch and help to shower 3 afternoons a week. We have to fill out a finance form, which was delayed arriving, but I feel giddy at the possibility of that much help.


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Holiday
flowerpotgirl
It has been a while since I posted as we have had exams, an 18th birthday, visits from family, the delights of a long form for ESA ( cheerful stuff, listing all the things you can't do so the government will continue to pay disability benefit, followed by a wait to see if I need to drag myself to an assessment for work), a slew of dentist visits and other appointments.
Then last week we went on holiday to a caravan in Kent. So a week of nagging people to get washing done/sort clothes etc, followed by 7 hours to get there. We had a really good drive, with a lot less traffic than I anticipated on a hot summer Saturday, but it was still a long day for me.
The caravan was great and the site was quiet - the joy of going before most schools had finished thanks to A's school juggling its non-pupil days.
It was too hot and still to start, but we went to Hastings and took advantage of the sea breeze and then it got slightly cooler, but still lovely.
We had family visit for a day, which went really well, and they also brought the eldest with them so we were a complete family for the latter half of the week.
We went to a castle, which turned out to be ideal for me, as the inside was mostly ruined so I didn't miss out on much. I lay on the grass admiring the ruins and reading about the origins of the castle while the keener/braver members of the family climbed narrow staircases and waved from the heights.
I nearly bought a hat at a milliner's in Rye, but it was too big for me. Not sure when I would have worn it anyway, given my extremely limited outings.I did bring home earrings which I am much more likely to wear and a jigsaw of the castle, to remind me on wet winter days.
The journey home was via eldest's student house, so took longer, but I finally got to see where she is living after a year there.
Shattered, but I have little planned for the next couple of weeks. I am pretty sure I will get involved in daughter's wisdom teeth op, packing for 2 separate trips (one each) to the student sister and Guide camp, exam results and hopefully preparation for uni, so I shall certainly not be bored. I may even squeeze in sorting out my software so I can dictate stories, but don't hold your breath!

Apologies
flowerpotgirl

Sorry, the link did not work properly and I cannot edit the post.
Hope this will work.
http://archiveofourown.org/works/726070[Unknown LJ tag]

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Determined to write again
flowerpotgirl

After a poor start to the year I have made a resolve to try and write some of the fics running through my brain.

This short piece has been in my head for a while and so I decided to start there.

http://archiveofourown.org/works/726070[Unknown LJ tag]

Read more...Collapse )

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A Positive Attitude
flowerpotgirl

I have been getting restless of late and realised that since Christmas I had only been out twice - a doctor's appointment and to pick my daughter up from the dentist.
Life has been increasingly lived upstairs, which makes going out difficult!
But I am getting better at accepting my limitations and focussing on the things I want to do rather than in trying to do everything.
My appointment for the new ME service yielded little new information, as expected, but the doctor had experience and knowledge of ME and I shouldn't get questions about why I haven't seen my GP for a while.
And I get an occupational therapy assessment, the excitement is endless.
Anyway, I decided I had to go somewhere last weekend, even if it was Tesco's.
In the end we actually went out for lunch without offspring, which was lovely, and on the way back stopped off and bought a Hi-Fi for my sitting room, so I have had music this week.
So, I am tired, but feeling a lot better and more cheerful generally. I will definitely try to plan at least one outing a month this year, especially if we get any nice weather.
I also had a dictaphone for my birthday and, hopefully, will be able to do some writing once I have set up the voice activation software on the computer.

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(no subject)
flowerpotgirl

When I heard that Rowan Williams, former Archbishop of Canterbury, and Richard Dawkins, professional atheist, would be holding a debate at Cambridge, my first thought was 'James would love that, wonder if he could get a ticket?'. Unfortunately, my daughter made me watch an emotional film about a dolphin and my brain got stuck so I cannot think of anywhere to take it, but does anyone feel like writing something? It seems an event right up Hathaway's street.

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Good news
flowerpotgirl

Big sigh of relief when B brought post up to me yesterday afternoon. A letter from DWP about back payment for DLA as a result of my appeal. Now I feel rich briefly! But more importantly, it shows they do not plan to appeal the tribunal's decision.

Ironically, the battery of tests required for my referral to the new CFS/ME service showed an infection so I am on antibiotics or they will probably use it as an excuse to delay. The first time I have got a phone call out of the blue offering me a prescription!

The trouble with ME is that you get so many odd symptoms that it can be difficult to know the cause.

Physically not a good week, but last week got manic with lunch, a 'walk', visitors, voting and blood tests.

I am using my time wisely - debating which DVD boxsets I can now buy.
Do I get the Lewis 1-6 or is it worth waiting for a 1-7 set? But that could be months.
B been watching Grey's Anatomy with me but I've only got up to season 5 so I think I will be 'persuaded' to get more.

Got a nasty feeling that J has been tidying and thrown away the catalogue in which I had a list of ideas for Christmas, but at the time had no money to buy. Plus some extras like distinctive crockery for my sitting room as the return of items after washing up is erratic! I do not recommend eating yogurt with a fork ( daughter, I'm not that daft).
So, piles of paperwork and clean washing on our bedroom floor but the priority is the removal of a catalogue which he doesn't like because it has cheap stuff in it ( mix of good things, some brand names, at great price with some real rubbish and some incredibly tacky things). His parents were real brand name shoppers, yet hardly rich and the habits are difficult to break. I suppose I always loved ferreting out a bargain and this is the equivalent for me. I so miss Woolworth's at this time of year, it was my starting point for stocking fillers.

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Awesome day
flowerpotgirl

My birthday and I went to lunch then to a local National Trust place. Fresh air, beautifully scenery with the leaves turning colour and, of course, the obligatory shop!
When we got home the post had finally arrived - 3 parcels to open - and B had made me a cake.
Also, a letter from the tribunal service to say the appeal had been allowed - lower rate care and higher rate mobility - so now I just need the DWP to confirm that they have accepted the decision, as apparently they can appeal.
A great day.

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Tribunal
flowerpotgirl

Bad night before today's tribunal, not surprisingly.
They asked the usual things with some odd questions. The doc was again focussed on how often I see my GP, as if frequent attendance=increased disability. Of course I waste my precious energy going to be told that there is nothing they can do!
They asked their questions first then if I had anything to add. By that time ( 30-40 mins of questions, I lost track a bit) I was shattered. I picked up my notes, but ended up getting tearful and not able to focus on what I wanted to say. They seemed to understand but it is hard to tell. They are going to write and I did wonder, as the person before was asked to wait, if that was a bad sign.
So we came home, I cried and felt sorry for myself, then J made me a cuppa and some lunch before he went back to work. A bit more human now and B home from college so I foresee some Grey's Anatomy in my future!
Random thoughts about the tribunal - why did it make J feel guilty for working and, if in court previous convictions etc are not allowed, how come the DWP can submit my previous tribunal decision in evidence fir a totally new claim?
Going to live vicariously through fictional people's amazingly complicated lives and drool over McDreamy!

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Smug
flowerpotgirl

I got a favourite story alert on an old Stargate SG1 fic and ended up re-reading it. Is it wrong to think that it wasn't bad or should I be eaten up by angst and want to go back and re- write it?

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