tag:blogger.com,1999:blog-27874443.post115014400500348958..comments2024-01-27T18:00:54.268+00:00Comments on This Is My Blog: Productive DayMaryhttp://www.blogger.com/profile/11639094548415759560noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-27874443.post-1150320002851565152006-06-14T22:20:00.000+01:002006-06-14T22:20:00.000+01:00Yes, there are a lot of similarities between the s...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.<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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!<BR/><BR/>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...Maryhttps://www.blogger.com/profile/11639094548415759560noreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150314686550705182006-06-14T20:51:00.000+01:002006-06-14T20:51:00.000+01:00Goodness, thanks for the Goldfish reference. Didn...Goodness, thanks for the Goldfish reference. Didn't know I was there too.<BR/><BR/>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. <BR/><BR/>Anyways - hang in there. <BR/>:-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150310167576647592006-06-14T19:36:00.000+01:002006-06-14T19:36:00.000+01:00I don't think you have to tell them. If it's all ...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 toAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150234186024675152006-06-13T22:29:00.000+01:002006-06-13T22:29:00.000+01:00Hi MsShad!How did I find the Jacob poems? Well her...Hi MsShad!<BR/><BR/>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".<BR/><BR/>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.<BR/><BR/>Obviously that wasn't what Jacob's page was about at all, but it was a compelling read.Maryhttps://www.blogger.com/profile/11639094548415759560noreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150231883699115602006-06-13T21:51:00.000+01:002006-06-13T21:51:00.000+01:00Hi Mary. Thank you for reading my Jacob blog. Tha...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. <BR/><BR/>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.<BR/><BR/>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. <BR/><BR/>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!<BR/><BR/>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. <BR/><BR/>I am curious as to how you found me. I've not got much traffic, so did I come up somewhere?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150223147408004392006-06-13T19:25:00.000+01:002006-06-13T19:25:00.000+01:00Woah there. You're telling me that if, say, in a y...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?<BR/><BR/>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"?<BR/><BR/>I would like to see the Inland Revenue making a Bloody Big Donation to the Citizen's Advice Bureaux.<BR/><BR/><BR/>*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.Maryhttps://www.blogger.com/profile/11639094548415759560noreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150222120179669212006-06-13T19:08:00.000+01:002006-06-13T19:08:00.000+01:00Glad to see this was a better day than the one bef...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150189860431810402006-06-13T10:11:00.000+01:002006-06-13T10:11:00.000+01:00I sometimes think that's the way they work - last ...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...<BR/><BR/>Also, strangely enough the only magazines they had in their waiting room were <I>Horse and Hound</I> and <I>Yachting Monthly</I>, not the kind of reading material you'd expect to be suited to benefits claimants in general and certainly not disabled ones.<BR/><BR/>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.The Goldfishhttps://www.blogger.com/profile/15213378454070776331noreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150183442999680202006-06-13T08:24:00.000+01:002006-06-13T08:24:00.000+01:00Hi Katie! Nice to see you here again! That charity...Hi Katie! Nice to see you here again! That charity sounds a bit like one here called DIAL?<BR/><BR/>The idea of giving a lorry a name and a birthday party sounds like a fantastic excuse for cake to me :)<BR/><BR/>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...<BR/><BR/>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!<BR/><BR/>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.Maryhttps://www.blogger.com/profile/11639094548415759560noreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150159289502631822006-06-13T01:41:00.000+01:002006-06-13T01:41:00.000+01:00Glad you're feeling better. :-)Strongly recommend ...Glad you're feeling better. :-)<BR/><BR/><I>Strongly</I> 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.<BR/><BR/>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.<BR/><BR/>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 <A HREF="http://www.motability.co.uk/" REL="nofollow">Motorbility</A> 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.The Goldfishhttps://www.blogger.com/profile/15213378454070776331noreply@blogger.comtag:blogger.com,1999:blog-27874443.post-1150151138902093092006-06-12T23:25:00.000+01:002006-06-12T23:25:00.000+01:00Hi Batsgirl! Thought I would comment on your blog!...Hi Batsgirl! Thought I would comment on your blog! <BR/><BR/>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. <BR/><BR/>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. <BR/><BR/>The link if you are interested to see where I work is http://www.hadnet.org.uk and it's a great charity. <BR/><BR/>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.<BR/><BR/>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! <BR/><BR/>Have you an email address though, as it would be nice to have an internet fema\le buddy?Katiehttps://www.blogger.com/profile/02305216663591446183noreply@blogger.com