Slightly better day today. Poor Steve had to go back to work after his week off, and so I set my alarm so that I could call him and make sure he got out of bed on time. Which worked well. Unfortunately he didn't have a good day at work. They've just let all the crap pile up for him to deal with, the poor sod. And then they tried to tell him to do next weekend on call as well, at which point he told them No - it's not in his contract to do on-call, and he doesn't get anything more than his usual hourly rate for it, so he's not doing it. I only hope he can stick to his guns.
Pip took me to the Citizen's Advice Bureau as planned. We had to wait about an hour and a half to be seen, which wasn't bad going really. Waits of three to four hours are not unknown there. They got my form sorted out, the original is now posted and a photocopy is in my file here at home, so unless the Tax Credits department messes up again (which I'm sure they won't, being the highly trained and intelligent people they are) then everything is fluffy and nice and I won't hear from them again unless, once I get another job, I'm stupid enough to attempt to claim again. Either way, the ball has left my court.
Pip didn't have quite as much instant luck with his own issues (which I won't discuss here), but at least he now knows What To Do Next which is a good thing and all he was really looking for. He drove me home and was lovely enough to take my bin contents down to the outside bin (this is one of the most difficult things for me to do) before heading off to see Davina and leave me to nap.
I was feeling quite positive after getting the Tax Credits thing out of the way, so I continued to have a Productive Day within the constraints of my capabilities.
First up, I knew I would have to do some things outside, so I got ready, got set, and dropped a prescription request form off at the chemist, went to the cashpoint, went to the shop for some milk (and an ice-cream) and came home. It's great living with all those things within one block of my front door. If I didn't have them nearby I wouldn't be able to live on my own like this, it's that simple.
Another rest, and then it was online. There's a mobility scooter I want. Not just any little scooter though. This is the scooter to rule them all. It's more of a buggy really. It is... The Tramper . I've been looking at it for a couple of days now, and oh boy, it's wonderful. Take a look at that site, I mean really. This thing has a 30 mile range, it goes through snow, it goes through water, it goes over rocks and gravel and sand and everything. This is a serious scooter. I would pay all my mobility money and then some to afford this - ok so I'd have no money left for taxi fares any more, but would I care?
But it's just over £5,300. Not including accessories.
Which puts it a leetle bit out of my range, when I could get a reasonable little scooter that will take me around town for around £1,000 - £1,500. Less if I'm happy with second-hand.
I put all this aside as academic and instead focused on the short term. Davina's birthday is coming up and Pip doesn't know what to get her. I offered to help Pip look but we come up against a problem. Pip can't manage a son in a buggy and a friend in a wheelchair simultaneously. So I've called ShopMobility at Chapelfield Shopping Centre in Norwich, and they will charge me £5 for a year's membership plus £1.50 per day to use their mobility scooters. Then, we get four hours free parking at Chapelfield for using the scheme, so that practically pays for it. So hopefully at some point this week Pip and I will go with the littlun to Norwich on a rampage, erm, I mean shopping trip.
My brain aches so I'm signing off for now.
Monday, June 12, 2006
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11 comments:
Hi Batsgirl! Thought I would comment on your blog!
Sounds like you had a busy day and shame you had a long wait at the Citizens Advice Bureau and glad you got all your shopping jobs done. I have heard of the tramper and it's a good scooter.
I work for a charity in Hertfordshire where I live that has lots of equipment, advice and transport and the tramper is one of our brochures there that we have.
The link if you are interested to see where I work is http://www.hadnet.org.uk and it's a great charity.
One of our most popular things we do there is our mobile equipment lorry which takes equipment and advice to shopping centres in Herts and surrounding areas and tthe lorry is called Ivanhoe. Today we had a tea party to celebrate Ivanhoe's seventh birthday and to celebrate his new cab and chassis. How funny is that, having a tea party for a lorry! Great though as there were lots of food and cakes.
You sound like a good mate to me that likes chocolate and sweets and ice cream like me!!!! Great on you girl! You're a mate for life!
Have you an email address though, as it would be nice to have an internet fema\le buddy?
Glad you're feeling better. :-)
Strongly recommend going second-hand for the scooter. A lot of powerchairs and scooters are bought by or for older folks who then never get round to using them - especially when they've been bought for their behalf by middle-aged children. There are also lots of folks who buy these things only to find them inappropriate for their particular needs, or have only a temporary impairment.
I got a pristine, virtually unused powerchair for less than a third of its original price from my friend who lives in the countryside and decided that a scooter was more suitable for her purposes.
The thing is to be absolutely sure about what you want and then sit back and patiently watch for one to come up at a good price. Also, don't forget that Motorbility do have a scheme for renting/ buying scooters and the NHS may give you some money towards one - but I wouldn't know exactly how that works.
Hi Katie! Nice to see you here again! That charity sounds a bit like one here called DIAL?
The idea of giving a lorry a name and a birthday party sounds like a fantastic excuse for cake to me :)
Hi Goldfish, and thanks for your advice. It's a good point that a second-hand mobility scooter really IS likely to have just had one lady owner who took it shopping once a week...
Getting money out of the NHS sounds like an exercise in futility to me though. I'll just work on the basis that I get the High Rate Mobility component of Disability Living Allowance, which is to cover my mobility needs, and therefore use that money to pay for a scooter. Less paperwork all round!
I actually have this theory that if I was capable of applying for everything I am supposedly entitled to, and then fighting when they lose my forms/make a mistake/fail to provide access/discriminate against me due to disability, it would be proof that I am capable of a full time job.
I sometimes think that's the way they work - last interview I had for Incapacity Benefit, I turned up to find that the building had a massive great step I had to be carried over. I suppose if had I got into the building unaided, I may have lost my benefit...
Also, strangely enough the only magazines they had in their waiting room were Horse and Hound and Yachting Monthly, not the kind of reading material you'd expect to be suited to benefits claimants in general and certainly not disabled ones.
I wondered if anyone who was seen to pick up and read such publications was assumed to be both healthy and wealthy and sent on their way.
Glad to see this was a better day than the one before. As for the Tax Credits thing, I used to work for them as part of their hiring scheme to sort out the original balls up. When we used to phone people to make sure we had their details correct we would get lots of people saying "I just want to cancel them" It used to really annoy me because we had to tell them that we're unable to cancel tax credits, once you have applied that's it, you'll stay on our books forever. Stupid, utterly stupid. I resorted to referring people to the CAB so I hope everything gets sorted.
Woah there. You're telling me that if, say, in a year, I've got my act together enough to be able to get a part-time job again... I'll HAVE to tell those incompetent f**kwits* about it and go through that nightmare all over again, whether I like it or not, whether I want their money or not?
I can't just say "I don't want your money so please don't give me your hassle, I had enough of that last time round and now just getting an envelope from the Tax Credits department gives me a small panic attack"?
I would like to see the Inland Revenue making a Bloody Big Donation to the Citizen's Advice Bureaux.
*this is not me dismissing you as an incompetent f**kwit, the people who devised the system are the incompetent f**kwits, the poor buggers on the end of the phone helpline are usually just underpaid, undertrained, and every bit as vexed by the tangled-upness of the system as the people they are trying to help, in my experience.
Hi Mary. Thank you for reading my Jacob blog. That Scamper looks like the cadillac of scooters. I was at one point on the verge of needing a chair or scooter, and the only way I could handle that fact was to decorate it as a NASCAR race car. I got alot better tho, so quit looking for the best scoot.
Your system sounds like ours. Altho, I got my disability after only 7 months, when most people with MS have to reapply 2-3 times/2-3 years to get it. That convinced me I was really sick. Dammit.
I'm sorry that you have pain. Mine is constant too, but I'm so much better than I used to be that I feel a fraud to say that.
I'm glad to find your blog, and the comments with the advice was helpful too. Not sure you got to my current blog, so come on by!
Odd how, even after 23 years, I can read one of the Jacob poems and feel him. I clicked on each of your comments to see which poem you were referring to, and reading them out of context tends to make me see it emotionally rather than when I read it all at the same time, when I tend to put on a shield of some sort.
I am curious as to how you found me. I've not got much traffic, so did I come up somewhere?
Hi MsShad!
How did I find the Jacob poems? Well here goes... As you can see, I have a comment here from the Goldfish. I tend to have a look at the blogs of people who comment here - I looked at hers, and she has a MASSIVE list of other blogs on her blogroll, to do with all sorts of things. Both mine and yours are on there under "disability".
I noticed yours because it mentioned MS, which my mum has. So I had a little click. I spotted the link with Jacob's picture and was all "ooh, sweet little baby!" and partly I was hopeful that there'd be some tips about being a mum with a disability - somewhere in the archive here is a post titled "Babies" which explains a bit about my maternal longings and how they clash with my physical limitations.
Obviously that wasn't what Jacob's page was about at all, but it was a compelling read.
I don't think you have to tell them. If it's all sorted out and they give you as much money as you want from them, which is none by the sounds of things :), they'll send you your annual reminder telling you what your entitlement is and to let them know if youe circumstances have changed if they're giving you nothing there's no need to tell them, it's really only if they're paying you x amount of quids and you start earning more quids that they like to know. As for the call centre monkeys from my experience they don't get enough training. I wasn't working in the call centre but we had 2 weeks intensive training and they get about a days worth. SO many times we found that they were giving out the wrong advice, it's always a training issue. So just remember when they send you your entitlement check it to make sure they've sorted it and then just ignore. There's always the chance that since you've been through the CAB the application might have been properly cancelled, I never knew what happened after they'd threatened IR with CAB. Don't worry about it just keep an eye on the amount they say you're entitled to
Goodness, thanks for the Goldfish reference. Didn't know I was there too.
I've read quite a bit of your blog, and I'm surprised how similiar my symptoms are with yours, when mine are flaring up. You're able to describe it better than I.
Anyways - hang in there.
:-)
Yes, there are a lot of similarities between the symptoms of MS and ME! However there is a big difference in approach, which is where my mum and I come unstuck.
My mum (MS) is advised to keep trying to do things, as much as she can without ending up in a complete state, as this will encourage her nerves to create and reinforce new pathways (or something like that). I think the idea is that for every bit of brain that has a shadow, another bit of brain has to be made to work twice as hard, or something.
Whereas for me (ME) the advice is to take it slowly, use what they call "pacing techniques", rest well *before* I need to rather than pushing myself to the limits which will only make me iller.
The trouble is that I was brought up by my mum, and therefore the concept of NOT pushing myself to my very limits each day drives me crazy!
So we have had several days where, while my mum is gritting her teeth trying to get on with things, I've been gritting my teeth trying to stay in bed like a good girl...
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