Wednesday May 13th
I re-read my posts yesterday and am surprised by how much I’m talking about politics.
So far this diary been full on politics, politics, politics.
I’m a little embarrassed to read my thoughts laid out so bare because it gives the impression that my life and my thoughts and this diary is all about politics all of the time.
It’s because I’m trying to sift and work through what’s happened with the election. It was a completely unexpected result that I was in every way unprepared for and I’m scared and frankly intimidated by what’s going to happen to me with the future welfare cuts. It’s not only that either.
There are also decisions about human rights, fox hunting and Europe – I mean come on – leaving Europe, economic advantage for trade for the UK – that’s going to be a referendum that is like putting a gun to the UK’s head.
I think that people might want to read about what political decisions happened to make me want to write this diary, but I’m going to withdraw from that as much as I can now.
It’s not good for my well being and health to be as hypervigilant and keyed into it all the time.
Saying that, Simon Hughes, the deposed Liberal Democrat MP interviewed on BBC Newsnight last night was the picture of calm and rationality: “I have a strong mind and body,” he said, or words to that effect.
“I wish I did,” was my thought in reply.
Writing too crisp and clean
Also my writing is getting oh so crisply edited and reads too objective and clean. That’s the writer and online editor in me working on and revising words, but that’s not the point of writing a diary.
So from now onwards I’m going to write more candidly and quickly.
Are you searching for details of welfare cuts?
I’ve noticed that people are hitting this blog when they are Googling the search terms “Tory welfare cuts” or “welfare cuts” so I know that there are people out there as worried as I am.
If that’s the reason why you are reading this then hello – you are not alone. I’m really worried too.
The news today suggested the cuts would be that the total household welfare bill will be reduced to £23,000. As I explained in this post I’ve already had my life turned upside down by the last benefit cap, combining being acutely sick with MECFS and financial chaos of first claiming benefits.
If there is anything more they are not yet releasing the information. I am just going to have to be patient for the truth.
Even typing the idea of waiting to hear about that out in front of me makes me angry, so I’ll move on.
Hospital appointment, brain fog and the madness in the NHS
Yesterday I went to an appointment at the local hospital for an MRI scan on my leg. I damaged it a while ago and the scan is to look inside and see what is going on. I’d written down the appointment on my Big Wall Diary which is my mother ship of organisation designed to bust brain fog to smithereens.
I also had a card that was given to me by the hospital with the appointment time on it. I had it fixed in my mind that yesterday was the day ever since the appointment was made.
Before I left I wondered if the hospital would have a different atmosphere in same way the Council estate did on Saturday. This was spurred on by DM, my Green voting Journalist friend telling me they’d been at a conference last Friday with NHS clinicians.
2 of them said to him: “Better get our CV’s up to date – we’re screwed!”
But there was no edge and everyone seemed happy and normal and going about their day. It’s a nice hospital anyway with a good reputation.
Having worked in a few myself though I’m always impressed by NHS workers’ Dunkirk Spirit. I thought I sniffed a bit of it in the air huddled between the green, blue and purple uniforms.
When the “Lansley Bill” was passed by parliament in 2012 what was being said behind closed doors and away from the public and patients was akin to a nuclear meltdown.
All may not be as positive as it seems.
I can make it to my local hospital and back on a bus which is literally door to door. It’s an easy journey and takes up not too much energy. I rely totally on buses to get around but I noticed that they took £1.50 from my Oyster card rather than 70p.
I think this means my half price travel form needs re-doing but it costs over £5.00 to have the passport photos done for the ID card – you have to have a new one each time you renew. This is so expensive for a card that is supposed to be for people on benefits. Who thinks through these things?
Brain fog strikes again
I got to the desk at Outpatients and offered the appointment card over the counter. The woman handed me back the card and told me that I’d missed the appointment – it was for Monday at 1:30 and not Tuesday at 1:30. I grabbed the card out of her hand in disbelief and brusquely took a look. Yes, it said it was on Monday and not on Tuesday.
I stood there looking at her thinking: “Oh my God. bloody brain fog!” Then I asked her whether she could book me a new one there and then.
She looked up at me with precise eyes and told me that wasn’t possible. She said I’d been discharged because I “missed my appointment and as it’s your fault you’ll have to go back to your GP and then get a fast re-referral.”
I looked at her incredulously. I was tired already from the journey there and had cleared everything yesterday to have the energy to attend. It takes a lot to travel anywhere and recover afterwards.
I said laughingly: “You can’t be serious. I have to book an appointment with my GP just to get a re-referral to then be sent a new appointment to come back again?”
Her eyes narrowed slightly as she said: “Well yes. That’s the way the system works,” then the pace of her words slowed down as she added the next bit, “if you don’t attend an appointment, you will be discharged.”
Her words delivered like Miss Jean Brodie were still hanging in the air as I turned back through the snake of the queue and departed.
On the way out I went into Boots on the ground floor. I’ve needed a new toothbrush for a while – one of those expensive vibrating ones that are essential for my teeth and gums.
They had them on offer for half price. This was lucky – I’ve been using one that has run out of it’s vibrate because the new ones were too expensive to buy at about £6.00 each. That’s a lot of money out of my pocket in one ESA fortnight when I need a new one.
My trainers that I bought from Primark 2 years ago have perfectly rounded holes in the soles. I need to replace them but the toothbrush has to come first.
A wasted trip, yes, but also an unexpected bargain. And, as sad as this is to admit, going anywhere different from my home is as thrilling and novel as a holiday….
I rang the GP surgery when I got back. Mentally preparing for a trip there is as tiring as mentally preparing for a trip to the hospital. I thought they must see the madness in asking me to attend simply to book a new one. What a waste of a GP appointment, what a complete waste of time all round!
The familiar voice at the end of the phone repeated verbatim what the woman at the Outpatients counter said. I railed against what she was saying. I told her that I find travelling exhausting, that they hadn’t sent me an appointment letter as she’d suggested, that yes, it was my error but I had ME and my brain doesn’t work well. I pleaded with her again to ask for her help.
She agreed to ask a doctor to ring me.
All I can say is thank goodness for the GP that called. Sensible, appreciative of the situation, understanding of the cognitive problems I have, she agreed it was a complete waste of time to come to the surgery, took a telephone consult and promised to send the referral off toute suite.
She hinted that the attitude I got at the hospital was all about who works at the desk on the day and that she’d feed it back to them. Then thanked me for thinking of the phone call.
Oh it felt so nice basking in the difference when someone who influences my health treats me with respect! So unusual when you have ME!
Change in the air
Last evening the spiked air from the weekend was softening and I felt as if was returning to center and becoming more calm.
It is essential to my health and well being that I find that soft spot quickly as my MECFS symptoms are made worse by shocks, surprises and stress. How I live my life is about maintaining that peace and calm.
At the end of the day I slid into some sunlight left in the corner of my garden. On the chair I sat in quiet, turning my face to the sun.
Two jackdaws flew overhead towards a sycamore tree that shades one side of the garden. They swooped back and forth, calling and playing with a magpie and a crow before one of them landed on the fence nearby.
It squawked at it’s friends.
I jumped out of the chair with a jolt as if I’d been stabbed. Then I found myself both laughing and then crying with falling tears.
I finished up by sneezing once! twice! ahhhhh, three! times.
Bloody ME. It’s a constantly primed minefield.
© Lindy 2015