And then the rain came down

Things have suddenly become Busy here in the land of Mary. Let's see, where were we up to...

The Second Job has started and is going well. Access to Work agreed that I should have an ergonomic keyboard and mouse, which I bought and they should be refunding at the end of this month. I also explained about how I would be mostly working at home but would occasionally need transport to go to what you might call Company Headquarters, in order to be shown how to do things, or given materials to work with, or to speak to my manager in person. So instead of being approved for "up to 10 journeys a week" (eg five trips To and five trips From work) like I am for my main job, I've been approved for "up to 104 journeys a year", which on average is a To and a From each week, but acknowledges that my working pattern is very, very flexible.

I had a second attempt at the chocolate cornflake cakes, this time using proper dark cooking chocolate. It worked much better than my Galaxy/cocoa powder/water combination. I'd show you a picture, but we ate most of them at knitting night. It probably would have been all of them but we felt we should save one or two for Steve. I would like to thank the ladies for sincerely congratulating me on my achievement without any sniggering.

I got my Direct Payments Monitoring Return completed and sent off. The stamped printout of the transactions for the period covered by the missing statement never did arrive - no idea whether that's the fault of the bank, or the fault of the Royal Mail, although I know which I think is more likely - so instead I made copies of the wage slip and BACS slip for that month and added a post-it note explaining that the statement was lost in the post, but this is what went in and out of the account and look, it tallies up with the end balance on the previous statement and the start balance on the next one. I'm sure they'll contact me if that isn't good enough.

So yeah, all in all I was feeling pretty proud of myself for keeping on top of it all and having everything ticking over.

And then the rain came down.

In among the self-perpetuating drizzle of increased pain levels because of the damp and cold, and grottiness because of increased painkiller side-effects, and getting frustrated and stressed because the grottiness makes it hard to think and the pain makes it hard for me to move so I can't DO things, and extra pain because the stress makes me tense, round and round and round, are a couple of real thunderclouds.

Firstly, my PA told me of a couple of issues that may affect her ability to work for me. I respect her confidentiality as I expect her to respect mine, so all I'll say on that front is: she's a great PA, I'm happy employing her, she's happy working for me, and it isn't anything that either of us have "done wrong", it's just one of those things. But what I can say is that, as an employer, I'm having to increase the gradient of my learning curve to perilously steep levels in order to keep up with what our respective rights and responsibilities are in this situation. I'm also having to spend a few extra hours on the phone and having meetings during the daytime, which interferes with my ability to save enough spoons for work.

Secondly, it's DLA time again. The form is a new one - shaved down to 40 pages of personal and depressing questions rather than the 50+ it was previously - but from what I can see, this has mostly been achieved by trimming down the spaces given for the non-tick-box questions. For instance, the question about help needed to take part in "hobbies, interests, social or religious activities" used to be close on three pages. Now, they provide two 5cmx16cm boxes, one for activities at home, one for activities when you go out. Which I guess is more than adequate if you don't need much help, but if you don't need much help, why would you be applying for DLA?

So Monday evening will be spent trying to contact the Citizens Advice Bureau by telephone (the local CAB is only manned four days a week, for five hours at a time, most of which I am at work). I'm hoping my combination of disability and having a job will be enough for them to allow me to make an appointment. Obviously I'll have to take time off work for such an appointment, but it would still be much better for me than the usual process where you go to the office and sit in the waiting room for however many hours it takes until someone becomes available, and if they don't become available, you come back the next day. It's not the fault of the CAB, who are staffed by volunteers and chronically underfunded for the amount of support they are meant to provide. But it does make it that little bit more inaccessible for those who need it, and it's another thing that shouldn't be soaking up my limited annual leave allowance.

Every time, this makes me angry. Services and support tend to assume a disabled person has an infinite amount of spare time, energy, money, learning capacity, and administrative ability at their fingertips. Get off benefit! Go to work! Squeeze all this crud in on top! How?