50/52 2017

Week 50
11 - 17 December

The first day of proper snow, Jamie hated it, largely because it was still falling and getting in his face. On the second day, he was adamant that he Did Not Want to go out.

So, my PA offered a Plan. She would go outside and play right in front of the window and attract his attention. I would wait for him to get interested and then wrestle the snowsuit onto him. Then she would open the door and he'd be able to simultaneously break free from me and get a better look at what she was doing and wouldn't realise he'd gone out in the snow until he was out in the snow.



It worked like a charm and he had a great time.

Bonus video footage:

08/52 2017

At the park again, and making better and better use of the equipment. Jamie is really getting the hang of climbing, although he's still somewhat overwhelmed by bigger kids. Having my PA able to hover behind Jamie on my behalf is a boon though. I do my best to be alongside, but playgrounds aren't perfect surfaces and I can't always get as close as I'd like.

On Practicalities

In the comments a couple of weeks ago was the following query:

"I wondered if sometime you might be able to write something about some of the practical issues around looking after a baby when you're disabled? My wife and I are considering having children soon, but I'm a bit concerned about how I will actually manage a baby with my level of fatigue (I have the same diagnosis as you), and with a wheelchair (how do you even push a pram with a wheelchair?!)."

I really want to answer this, but where to even begin...

Specific questions are easier and the query about pushing a pram with a wheelchair is simple enough to answer. I don't.

Every so often someone will send me a link to a product (which invariably turns out to not be a commercially available product, but a student's one-off engineering project or similar where they're trying to boost their grade on the Helping Those Less Fortunate ticket) that's a sort of pushchair that clamps onto a wheelchair. It's an interesting idea, but I've yet to see one that looks practical for any kind of day to day use.

If we're somewhere like my GP's surgery, where there's parking directly outside, seats inside, and not a lot of walking required, then I walk leaning on the pushchair, but most of the time when I'm out and about with Jamie he's in a sling on my front.



To find out about slings, I googled for my local sling library. The lady who ran it was very welcoming, and we had a very useful consultation session trying on different kinds of sling with a doll, and then with Jamie himself. We considered my ability to put the sling on myself, as well as what it was like once it was on. Then I was able to borrow my preferred type of sling for a fortnight to see how it worked for me "in the real world".

The answer is, it works very well. The time it takes me to sit in the back of the car, fish Jamie out of his car seat, shuffle him into the sling, and be ready to go, is about the same time as it takes Steve or my PA to pull out the ramps and get my powerchair out of the boot and round to the side of the car.

He likes being in the sling, especially while we're moving, and often falls asleep in it. Staff at my local Sainsburys have been known to dash over to say hello to Awake Jamie when we've only just entered the store, because he's almost always dozed off by the time we reach the checkouts.

It was also quite useful at home while Jamie was smaller and sleepier, because it meant he could snooze while upright (reflux issues meant he wasn't always a fan of lying down, especially straight after a feed) and I could use the computer, which among other things allowed me to keep on top of the admin of my Direct Payments.

Drawbacks: reduced upper body mobility is the biggie. I still have use of my arms but not as much reach, and twisting around in the chair to get at stuff in the backpack is right out.

Eating and drinking with a baby strapped to your front can be tricky at best and potentially dangerous at worst. My experience so far is that while the baby is pre-high-chair, you either need to have a pram/pushchair to put him in, or you need to be with someone who's happy to take turns for who gets to eat vs who holds the baby.

It can get a bit heavy after a while. It's very inconvenient if you've gone out intending to try clothes on. And personally, I haven't felt comfortable to try going to the loo while wearing him. So if I'm going to be out for a long time, or as above if I'm planning to try on clothes or stop for food, then I ask my PA to bring the pushchair (which is also useful for stashing shopping). It's really important to me, though, that as a rule we don't have a PA pushing Jamie while Mummy trundles off ahead or behind.

Hopefully this helps someone... more questions welcomed, although I can't guarantee they'll be answered!

Flowers

One of the unblogged adventures of 2013 was my tomato plants. We got a Heinz Tomato Ketchup-themed Christmas present that included a couple of little pots and a packet of tomato seeds. Having a less than stellar track record with novelty-gift plants, we didn't expect anything to actually grow. We just figured that there was nothing to lose by putting them in soil and seeing what happened.



Amazingly, they grew. In fact they grew beyond all expectation, despite snow and frost and neglect. My PA brought over some of her spare plant pots and some compost so that I could pot them on and they could carry on growing. I feared that the act of breaking them apart from their clumps in the tiny pots would kill them... no, they not only survived, but they continued to grow to the point when they got too big again and my lovely neighbour gave me a few more plant pots, plus some bamboo canes and plant ties to hold them up. I ended up with about 14 plants that grew about 50 decent-sized tomatoes between them, the only slight downside being that for some reason they didn't turn red until October, and ended up becoming soup rather than salads.

Once I had not just harvested but also disposed of the tomato plants, I realised that having the soil and the empty pots was a bit sad, so I went to a garden centre to get bulbs which require a level of wintertime maintenance that I can totally deal with, ie, none. Leaving the pots alone for a few cold, wet months resulted in snowdrops, crocuses, and then daffodils this spring.



The daffodils were followed by alliums and then that was it for the bulbs. The yard was bare again.

A day came, about a month ago, when I didn't have any particular tasks that needed doing and had planned to go have a day out somewhere new with my PA. Unfortunately I really wasn't feeling too well at all so I adjusted the activity level down to: go to a garden centre, find a nice little flowering shrub or something already in a pot to brighten up the yard again with minimal effort. Have a cup of tea and some cake at the garden centre cafe, and then come home. Small quiet excursion that is better than staring at four walls.

Unfortunately it was one of those days when even that was too much. I could barely push from the car park to the cafe. I looked at all the cakes and decided that no, I did not want cake (which is not like me). We got the tea for form's sake but I only managed to drink half of it before I absolutely had to go home. Plants didn't really seem like a priority.

My PA was understandably hesitant to leave me all on my own for the rest of the day. Instead she made sure I was safe and comfortable for a nap, and then went to fetch from her own greenhouse the excess plants that she hadn't planted in her garden. While I slept, she filled my pots with all sorts of plants. I was really touched by the gesture, and as the weeks have gone by, the flowers have bloomed into an ever more colourful display.



There's some white ones starting to open on the big plants at the back, and a few tiny blue ones hiding in the gaps between the pots. There's also scented ones mixed in... I don't know what any of them are called, but having them there to look at is making me so happy.

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

Stop

Sitting in Steve's study this morning, sharing the first cuppa of the day, catching up on the overnight Twitter feed but discussing nothing more weighty than whether we had a good night's sleep.

A thought occurs to me, I raise my head and start with "Steve?" but before he can respond, a scythe of pain slices through me, somewhere behind my eyeballs. I can't see, the world spins, I want to lie down but I can't work out which direction that might be.

Stop.

There's ways and ways of saying Stop. Steve knows me well enough by now to understand what this one means. He doesn't ask questions, he doesn't move, he doesn't fuss, he just stops and waits. If we are lucky, I'm going to catch myself and slowly work back up to speed. If we're not lucky, he'd better be ready to catch me and make sure I don't knock the cups over.

Time passes, but we are a tableau, a freeze-frame, suspended animation. With an effort I breathe in, and then back out. A brightly-coloured wriggling skewer of pain dances in the cavern of my skull which suddenly seems to be much larger than any part of my body has a right to be. I breathe again and my outstretched hands identify the edge of the guest bed, which my upper body gratefully sinks onto. The duvet fills my eye sockets with calm, refreshing darkness, and the vicious little spears of pain begin to dissipate into a cloud which is bigger, but more muted and easier to cope with.

Slowly, the passage of time reasserts itself. Gently, Steve begins to move and both of us make a conscious effort to relax again.

Soon we start to giggle about the unfairness of him being effectively told to shut up before he's had a chance to say anything. The tea has not quite gone cold. I will have to be cautious today, avoid pushing my limits, but as long as I'm careful, I should have the spoons to manage everything essential.

Life goes on.

One of the 'essentials' today was to go and vote, with the help of my PA. I'm pleased to report that it was an accessible experience - we were able to park at the polling station, wheel in without difficulty, there was a wheelchair-height polling booth available, and I was politely advised that if I had difficulty reaching to post my paper into the ballot box, I could ask one of the officials to do it for me. I didn't - but the offer was appreciated.

Stuck!

As per the plan I detailed last time, today my PA and I set off for the local Citizen's Advice Bureau, to see about getting help with the DLA forms.

The CAB is at the end of a long terrace of gorgeous Regency houses that have been converted into offices. In other words, steps all over the place, mostly without so much as a handrail. But charity sector and public sector buildings tend to do much better on access than private sector businesses, and as such there is an outdoor lift at the side of the CAB's building. Hurrah! At exactly 10am, which is when they open, we rolled up to the lift-gate, read the instructions, and twisted the red gate-release button. Nothing. Pressed and twisted the red button. Nothing. Pressed the lift-call button to make sure the lift was properly down (often they won't open unless they're right at ground level). Nothing.

Feeling incredibly fortunate to have a PA, I sent her to the top of the stairs to see if it worked at the top (or to put it another way, "is this thing on?"). Yes, the lift call button at the top worked, the lift rose majestically, and the gate at the top opened. Now that the lift was up, my call-button at the bottom worked to make it come down again... but would the red gate-release button release the gate? Would it hell.

Okay, never mind. I asked my PA to go inside and see if she could find a staff member who would come out and either (a) say "ah yes, we know that button is broken and this is how we deal with it," or alternatively, (b) take my details and arrange an appointment at a different building without me having to physically go into the CAB.

*sigh*

What we got was a staff member who assumed my PA was on about a child in a pushchair and who looked horrified when she saw me sitting there. I sat in the cold, damp alley and shivered while she went through all the button-pressing sequences we had, to no avail, and went back inside to ask for help.

So then there were three different staff members milling about outside. Volunteer One was standing at the top of the stairs, ineffectually musing about how they'd had the lift repaired only a couple of weeks ago and wasn't it awful, you would think an outdoor lift would work outdoors, the whole thing was a big waste of money. Volunteer Two, after a few minutes, decided to give up on the lift, apologised to me, and asked if I'd mind awfully if she took my details outside and then she'd arrange for a referral to a specialist advisor who would phone me to make an appointment. I'd have been happy enough with that, but then the third staff member, who'd been raising and lowering and prodding and rattling the lift, made a triumphant sound and opened the bottom gate. And they all looked at me, expectantly, and my PA and I looked at each other, in horror.

See, stranded at the bottom of the stairs with a non-functional lift is not too much of a problem. You are effectively locked out of the building, but you can cut your losses and get from where you are to just about anywhere else - including your car and your house. Stranded at the top is a different matter entirely. You are effectively locked in and can't go anywhere.

Did we trust this lift to not only get us safely to the top, but also to deliver us back to the bottom and let us out again?

Well, no, not really, but three volunteers, none of whom were dressed for being outdoors in October, were standing around waiting for us to embark - one with a very pleased grin at his success in opening the gate - and I wasn't up to an argument. We rolled on and did our best not to wince as the gate clanged shut behind us.

Now, to be fair, once we were inside the building everything went marvellously well. Since I'd already explained my situation and had a certain amount of advice from Volunteer Two, I didn't have to queue behind all the people who'd walked in while I was sitting at the bottom of the lift, she just carried on sorting out the referral as she would have done if I was still outdoors. It was arranged that an outreach worker specialising in disability would call me in the afternoon to arrange an appointment at a rather more accessible premises that also happens to be nearer to my end of town. Pleased with this, we left.

Or tried to. Because, unsurprisingly, the bottom gate refused to open, and this time, we were on the wrong side of it.

Now, I'm going to take a moment to describe this lift. An effort - a very creditable effort - has been made to make it fit in with the surrounding architecture. Or to put it another way, the safety barrier all around the lift is five-foot-tall black iron spiky railings, to match the ones adorning the other houses. However, it is difficult to feel the proper appreciation for such attractive and thoughtful design when you are trapped inside it and staring out through bars getting gently drizzled on, while a couple more volunteers, neither of whom were present at the original effort to open the bottom gate, poke and prod and make useful observations such as the fact the top gate opens.

This in turn made us late (not to mention cold, bedraggled and miserable) for the Social Services meeting, but at least we had a good excuse.

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?

Wednesday

Wednesday is my day off, but today, it really doesn't feel like one.

What I'm about to say is going to sound really daft...

Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.

Anybody from Social Services reading this, I said almost, and I'm only referring to today...

You see, I have nothing to do.

Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.

The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.

I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.

I have enough library books to last several weeks, and there's nothing at all that I need to shop for.

As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.

Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.

But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.

So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.

All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.

Google does everything

except a very simple thing I want it to do.

I've spent weeks, on and off, trying to find something to quickly and easily calculate mileage when I'm out with my PA, so that I know how much petrol money to pay her, and I can't do it.

We mostly go to the same dozen or so locations, but not in the same order and not all in the same day. For instance, on week 1, we might go from my house to the doctor's and then to the bank and then to the swimming pool and then to the shop and then to my house. On week 2 we might go from my house to the bank and then to the library and then to the park and then to my house. On week 3 we might go from my house to the shop and then to the doctor and then to the park... you get the idea.

Currently I calculate mileage by typing all the locations into the Google Maps "get directions" thingy, and then confirming which one I mean for most of them, and then making sure all the dots are where they should be, and adding them up. It only takes ten minutes, and it works well because it plots a route that accounts for one-way systems and suchlike, but it's getting tedious because it's always the same places that I'm having to type in again and again and again, and I have to do it on-the-go or as soon as I get home because by that point I'm really tired and I can't depend on being able to remember exactly where we went post-nap.

I played with the google "My Maps" thing and put a handful of my regular locations into a "local places".

What I want to be able to do is open that up and then drag-and-drop the locations I went to on a given day from my "local places" map into the "get directions" boxes, click OK, and get a list that looks like this:

My House to Doctor: 0.6m
Doctor to Shops: 0.2m
Shops to Park: 2.6m
Park to My House: 3.0m
Total: 6.4m

... which I can just copy and paste into the mileage sheet ready to send off to the salary service each month.

I don't understand how there can be a google app to make my G1 look like a Star Trek tricorder, but not one to calculate mileage. Geeks have expenses claims too, right?

Developing Specialist Skills

Speak to someone who acquired a disability and has had it for a few years, and there's a good chance they'll be keen to make sure you know it's not all bad. In fact, those of us who are a bit more... excitable... about the whole disability/equality issues "thing" (I include myself in this group) have perhaps a bit too much propensity to shove a firework of Positive Empowered Attitude up the backside of anyone suspected of misplaced sympathy or tragic admiration.

Part of this is sometimes to assert that you have learned things or gone places or met people that you wouldn't have done had it not been for your cripdom. But all too often these are either speculative (who's to say you wouldn't have met your wonderful partner if you'd remained walkie-talkie? who's to say you wouldn't have met someone else just as wonderful?), hard to quantify (how do you measure insight?), or irrelevant to a nondisabled audience (wheelchair breakdancing is impressive, but doesn't really connect for someone who's never used a wheelchair themselves).

But finally, today, I realised I had a definite, quantifiable skill, born of my disability and yet noticed and envied by a nondisabled person - my PA, who gazed at me with a baffled yet admiring look and asked "how do you DO that?"

I can shop. I can shop fast and yet I rarely have anything that I regret buying once I've got it home. I can spot a "possible" item from across the store, and once I'm closer I can very quickly assess whether it meets my requirements and whether I think it is worth the price on the tag. If yes, then I'll buy it (except in the case of clothes, which I still insist on trying on first - but only for fit, I'm always confident about whether or not it will suit me). If no, I'll put it down and forget about it.

It's probably a combination of all sorts of things, for example not wanting to waste my precious three hours by faffing about, not wanting to spend more spoons than I have to on any given activity, and having had the same tastes and 'style' for years. If wandering around the shops and trying on clothes was still a pain-free activity, I'd probably be doing a lot more of it. Disability has stopped me dithering.

Admittedly it is not a skill that will save the world - most things don't. But it's a knack I'm pleased to have developed.

More PA Stuff

Wednesday was my second session with my PA. We went to the Pump Rooms in Leamington which is a sort of combination of art gallery, museum, library, tourist information desk, cafe, and function rooms. It was interesting, but in a slightly weird way.

We were wandering around looking at all the exhibits about the history of Leamington Spa, and of course a lot of that is information about, you know, the actual Spa part of it. Some of the more experimental equipment looked downright scary, but a lot of the descriptions made the spa experience seem like a lovely way to spend a day. The Victorian visitors to the spa would drink lots of water (although apparently it didn't taste very nice), and then you'd have a soak in this and a massage with that and a steam treatment over here and then you'd go through to a cooler room and relax on a sort of sun-lounger while someone brought you a drink and a snack. The place was purpose-built and therefore extraordinarily accessible, since a big chunk of the target market would by definition be elderly or infirm and therefore being wheeled about the place. However it is also beautiful, since another important aspect of its function was to be a pleasant and relaxing environment rather than a clinical one. Afterwards, you went across the road to Jephson Gardens to enjoy the gentle recreation and surroundings.

God, it sounded like bliss, the absolute art of relaxation. Which was the weird bit. To be a disabled and kind of stressed-out (don't ask) person, sitting in an accessible hydrotherapy and relaxation facility, which is no longer in use but gets given money to produce displays and information about how fabulous it once was...

I still haven't got the hang of having a PA yet, though. The problem isn't her - she's lovely and doing really well. I just can't seem to get my head around having an employee.

For example. On Wednesday, when we got back from our outing, I was feeling pretty rough, and I wanted a cup of tea. So while my PA brought in the wheelchair, I shuffled through to the kitchen and started trying to make a cuppa. I was visibly and obviously having trouble, and my PA asked if I'd like her to do it. Full marks to her for asking rather than muscling in. But I messed up - I autoresponded with "no, no, I can manage" just like I would if a friend was there.

But my PA is not there as a friend. She's there as an employee. Helping me with the normal stuff (like tea-making) that is difficult or painful for me to attempt to do is not an additional favour that I would be unreasonably demanding of a friend who has already put themselves out for me by taking me out. It is the entire reason she is there and is what she is getting paid for. It is unfair of me as an employer to expect her to stand around like a lemon watching me struggle when she is aware that her job description is to help me so that I don't have to struggle.

I really have to try and get to grips with the whole idea. Intellectually I get it, but in a more immediate sense, it's just... I get through my life by insisting that I am capable of being independent, that I can Do Things, although they might be more difficult or take longer. In my day-to-day life I do any number of things that are stupid or reckless or painful simply because they need doing and no one else is likely to do them - like hanging up laundry or heating up food or washing up dishes - and then I fall over or spill stuff or scald myself or break something - and then I basically yell at myself to stop being such a useless pansy and get the hell on with things. But it gets worse, because then on the occasions when I am offered help, I push it away! For instance, I'm so sick of people assuming that Steve does everything for me and waits on me hand and foot, that I overcompensate in trying to make sure he doesn't do anything of the sort. It's even worse with people I don't know well. Admitting I can't do stuff and asking for help is like doing a DLA form. I hate it. It makes me feel vulnerable. It's also really irrational and I need to find a way of sorting it out.

Good Start

Today was the first day with my new PA and I don't think it could have gone better.

She came round this morning, bang on time, which is always a good start. We spent a while going through the formal paperwork (and hooray for P at the Rowan for making sure I knew exactly what needed doing to each piece), and I also gave her the instructions for what to do in case of those little emergencies, so frequent in my life, that aren't 999 emergencies but involve me being too incapacitated to explain what's going on as the situation unfolds. I'd used an online translation tool to print up those instructions in both English and in her own first language, and she seemed a bit surprised by that, but in a good way. I was a bit concerned about whether it was the right approach - on the one hand, I wanted to be 100% sure she would know what to do in such a situation rather than have to translate as well as cope, on the other hand, I didn't want to seem patronising as her English is pretty good - but it seems to have gone okay.

After that, it was just a question of showing her how to take apart and reassemble the wheelchair and we were off and away into town. Nice and relaxed, we went into a few shops in the generally quite accessible central part of the town. She listened well to advice about how to best tackle certain obstacles (such as the trick of going backwards to get through a door with a lip), and in shops she was really good about browsing nearby without hovering over my shoulder or making me feel rushed.

The weather was gorgeous so we sat outside at the Olive Garden Café and I had some juice and a snack and enjoyed watching the world go by for a bit. Then we went to the park for a wander-around. Turns out this is something we have in common - we both love the sunshine.

I guess it sounds like a strange thing to get excited about. "It was my day off. The weather was nice. I went into town, looked in some shops, bought a couple of things, had something to eat, and then went to the park."

But the really exciting parts, you see, are things like:

• I'm having a bit of trouble with my condition at the moment and usually that would prevent me from attempting to go out unless absolutely necessary, but today it didn't have to.


• Usually at the park I'm feeling grateful and indebted to whoever is pushing me and feel bashful about giving directions (especially when I want to go uphill), but today I didn't have to, I could go wherever I wanted and that was very empowering. Of course I've done that on the scooter, but,


• When I started to feel very unwell and crumpled up, I didn't have to try and find my way back to anywhere, or fend off any concerned passersby, or use up reserve spoons I don't have trying to cope, as someone was there to keep me safe and help me medicate and generally take charge of the situation.


• Once I'd got home and rested, I woke up feeling my version of "normal", rather than having arms and legs screaming from the effort and wondering why I did this to myself just for an amble about. I should still feel alright tomorrow - I haven't overexerted myself for the sake of a watch battery and a cheese and ham panini.

Next week I think I might see about going swimming. I fear that part of me is going to run into trouble thinking of Things To Do, now that I have someone available to help me do them. Suggestions would be very, very welcome.

Nobody knows what's going on...

Being one who cannot walk or drive or use public transport, I sometimes make use of the local Community Taxi scheme. This is administered on behalf of the local council by a local football club whose premises are also used for all sorts of "community ventures". A journey by community taxi isn't as cheap as a bus, is only available during daytime hours, and you have to book a couple of days in advance, BUT it's door-to-door, it's guaranteed accessible and it's about half the price of a normal taxi, so swings and roundabouts. Generally, for unplanned things I need to use a normal taxi, but for planned things like say a dental appointment I use the community taxi. So far so good.

In February I got a letter from the football club telling me that the Service Level Agreement with the local council would expire at the end of March and that the council had decided it would not be renewed. The letter told me that the council would instead be issuing "taxi tokens" for people who could not make use of a bus pass.

Today is March 16th so there are 15 days left until the change from community taxi to taxi tokens. I still hadn't heard anything from the council, but we know that some of our post is *cough* going missing *cough* so I thought I'd phone the council to make sure I hadn't missed the letter and ask things like "what are taxi tokens?" and "when can I have some?"

The chap on the phone said they don't know what's happening yet. He said they were hoping a decision would be made within the next two weeks and that then people using the community taxi scheme would be written to and informed of what was going to happen. I don't know how long it will then take to physically distribute these "tokens" or where/how they might be redeemable.

So basically, having tossed the old system, which wasn't perfect but helped a lot of people, they hope they'll have decided what new system they want to use before the old system expires.

All of this makes me even happier to be able to report that it shouldn't bother me too much, because I now have a PA to take me places. She starts this week. A big round of applause for P at the Rowan Organisation who has very competently and patiently guided me through the entire process of getting Direct Payments and becoming an employer and hiring a PA, from advertising to insurance to contracts and everything else that goes with it. It's an awful lot to try and understand, especially with my brainfog on, but P has always been able to answer my questions and explain things clearly, thoroughly, and (this is important) without making me feel like a moron.

Regrettably the local council's SLA with the Rowan is also expiring at the end of March, so I'm losing the marvellously competent, efficient and trustworthy P, and in much the same way as no one can tell me about these taxi tokens, I still don't know who I'm getting transferred to instead to steer me through my first months as an employer.

I fear April may be Interesting.

If I was a writer, I would say I have writer's block.

I'm not sure what the blogger's equivalent might be. Suggestions in the comments. I have all sorts of ideas and then I open up notepad and all I can manage is one or two horrifically-formed sentences which I would be embarrassed to put my name to. To which I would be embarrassed to put my name. You see? So I'm afraid for now we'll just have to settle for this rambling hotch-potch of miscellaneous Thoughts.

My cold got better, I managed with just one day off work when it was at its worst and there was a fever to go with it which I think is fair enough.

Steve and I have done lots of Interesting Stuff and I have gone "ooh, I will enjoy blogging about this" and then tried to write a post and not got anywhere. So for now you'll just have to have the bare bones and add your own detail:

National Sea Life Centre, Birmingham.

Steve and I went with one of Steve's friends. They took lots of photos, you can see Steve's photos here. It was both soothing and interesting watching the various inhabitants of the tanks swimming about. The HUGE turtle was especially serene, and much more graceful than you would expect of something weighing more than two adult men. Accessibility was great, it's a step-free environment and I only saw one staircase, for which there was a small lift equivalent within a few metres. However wheelies should be aware it's a lot of slopes - the building has a surprisingly small 'footprint' but is multi-storey - so pushing assistance is recommended.


The Roald Dahl Museum and Story Centre.

As a lifelong Roald Dahl fan, I have wanted to go to this since it first opened. Encouragingly, Steve and I spotted it in the Rough Guide to Accessible Britain so off we went. It was everything we hoped for. The Archive has all sorts of original material, from first drafts of books to letters from his publisher, from the telegrams sent to his parents to congratulate them on the birth of their son, to the regular letters home that he wrote throughout his life. The museum has some of these items on display in museum cases, with the items changed every three months to preserve them from light damage. That's quite exciting for a fan, to see the actual items themselves. But the heart of the museum is its child-friendliness and hands-on-ness. One particularly thrilling piece was the reconstruction of his writing-shed, complete with a filing cabinet of which one drawer was open - and in the drawer were letters from the publisher and annotated drafts and whatnot, looking for all the world like the real thing (they are printouts of the scans of the originals).

I can't be positive enough about the museum, and it's not just the fan in me talking. Look at the website. The accessibility isn't a joke, either - not only can a wheelchair get everywhere easily, but there are also plenty of seats, carers/PAs can get in free, and other adjustments (such as audio transcripts) are available. The only, only hitch is that due to the historic nature of Great Missenden High Street, there's no immediately nearby parking facilities - it's several minutes' walk, which could cause difficulty for wobbly walkers.

Add in a sprinkling of bowling, knitting, meals with friends, a visit to the park, and some shopping, and I haven't been bored. I just haven't been blogging, is all.

The job advert for my PA was in the paper last week, and there's just under three weeks for all the many millions of hopeful candidates to get their applications submitted. Finding the right person is going to be a delicate balancing act. For instance:

- I must get on well enough with them to be able to trust them with my safety and relax in their company. However at the same time, they're not being paid to be my friend, and the relationship must stay on a professional footing.

- They must be able to accept that I'm the one in charge who decides what we are doing and when and how we are doing it just like any other employer/employee dynamic. However they have to be confident enough to take control of a situation when I'm suddenly slumped up and barely conscious.

You see what I mean? And how does one find out this sort of thing in an interview? I think I may have done better to advertise for "henchman required, to enable disabled evil genius to take over the world. Experience with lasers an advantage," at least then I'd know I was getting the right sort of people applying for the job.

Suggestions for posts welcome, anything to get me writing properly again.

Eek!

The job advert for my Social Care Personal Assistant (PA) has been confirmed to run in a local paper next week, as well as to be put up at the local Jobcentre and the nearest university. The closing date for applications will be three weeks after that, and provisionally I will hold interviews two weeks after that.

So hopefully, in the next month or so, I will have some help to Do Things other than work, to the tune of three hours a week. "Things" essentially means anything out of the house that I can't do by myself, so some of it will be leisure activities (like going swimming or shopping) and some of it will have to be essential nonwork activities (like going to the CAB or hospital appointments).

It's going to be a great relief to be able to get help with these things rather than having to either depend on the goodwill of friends, or weigh up an activity against whether Steve could be allowed to take time off work and whether we could afford for him to do so (as a contractor, Steve is only paid for hours worked, with no rights for sick days, holidays, care duties, etc).

The learning curve for How To Be An Employer is astounding, and this despite the fact that I am having my hand held all the way through by the Rowan Organisation. I suspect I'm not making it any easier for myself by trying to be the kind of employer I would want to be employed by, while bearing in mind it is a job that I do not have the physical capacity to do.

The other bit which does my head in is that the going rate for a PA is £7.70 an hour plus mileage and expenses. This is substantially more than I earn, so basically we're saying that my assistant's time is worth more than mine is. That stings a little.

Still, it's not my money, unless I want assistance for more than three hours a week. If I'm lucky I'll manage to find someone really good, who is willing to go beyond just pushing the wheelchair where I ask her to, and actually help me develop my life a bit and come up with some fun things to do. In return they get what's really one of the less arduous ways to earn £20, not to mention the opportunity to participate in various leisure activities without having to pay any entry fees. It's a great job for the right person.

My next task is to try and think of about a dozen questions for interview. Some are no-brainers, like "tell me more about what you're currently doing," or "why do you want this job?" and then there's good old-fashioned trick questions like "so what are you doing with the rest of your day?" but beyond that I've no idea. Is it too optimistic to shove in one about the social and medical models of disability? As ever, all help gratefully received.