Archive for the ‘round-up for friends’ Category

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Tuesday Round-up for Friends

2008 December 9

Off topic these days for this blog…

I’m a fan of Robert Jordan. He’s the author of the fantasy series “The Wheel of Time“. It’s a series of 11 books that tell the story of Rand Al’Thor,  and his fight against evil. If you’re not familiar with the fantasy genre (and who can possibly be unfamiliar these days?) – think of The Lord of the Rings.

***SPOILER – POSSIBLE SECRETS GIVEN AWAY IF YOU’RE READING EARLIER THAN BOOK FOUR***

As a would-be author, but for the ‘slight’ handicap of not being able to visualise, I find I’m looking behind his stories to their inner workings. Besides the obvious amazement that someone could tell an 11 (actually 12?) book novel, I’ve spotted something. It may be a clue to at least the early development of Jordan’s storyline. Perhaps unsurprisingly, it has to do with Merlin and the tales of King Arthur. Here’s why…

Look at the name of the hero:

  • Rand Al’Thor — Aurthur
  • The Dragon Reborn — Pendragon
  • And also Artur Hawkwing.

Then there are the mentors/meddlers in Rand’s life:

  • Moiraine (Aes Sedai = female sorcerer) — Merlin,
  • Thom Merrilin (physical appearance like older Merlin) — Merlin,
  • The Amyrlin Seat — Merlin.

Perhaps he dies, or originally was set to die…

  • in Caemlyn — Camlann ?

To be laid to rest…

  • in Tar Valon — Avalon ?

Other characters’ names bear relation to those in the various literature around Arthur:

  • Gawyn — Gawain,
  • Galad — Galahad,
  • Egwene al’Vere — Guinevere,
  • Elayne — various Elaines in Arthurian mythology, especially Elaine of Astolat – representing unrequited love.

And then there is the Sword in the Stone.

  • In Arthurian legend, Excalibur was a sword held by magic in rock only the hilt showing. Only the rightful king of the Britons could pull the sword from the stone, thus proclaiming himself King.
  • In The Wheel of Time, Callandor is a sword “that is not a sword”, held magically in a fortress called the Stone of Tear. Only the Dragon Reborn could pass the magical barrier, claim the sword and so declare himself the Dragon Reborn.

In both examples, the sword is in a “stone”, accessible only to the hero, who by obtaining it declares his legitimacy.

There’s also some similarity to the three names (all derived from the third, the Welsh name) of Arthur’s sword:

  • Excalibur — Callandor,
  • Caliburn — Callandor,
  • Caledfwlch — Callandor.

All of this may be coincidental. But I can’t help wondering if it shows some of the early inspiration in Jordan’s development of the saga of the Wheel of Time.

Anyone who has read and enjoyed Tolkien will love Jordan’s work. Though his writing style is more modern, the intricate workings, plot twists and imagination are unrivalled by many authors in any genre.

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Tuesday Round-up for Friends

2008 December 3

Another Wednesday’s Tuesday’s post. If you see what I mean.

Yesterday, the government commission looking at welfare reform reported its findings. It said that “almost everyone on benefits should be preparing themselves for work” (BBC). The groups specifically suggested include:

  • Lone parents with children aged one to seven.
  • People on incapacity benefit deemed capable of work.

In fact, almost everyone on benefits except:

  • Some carers.
  • Lone parents and partners with children under one.
  • People with serious illnesses.

Moving beyond, presumably, my local Benefits Delivery Centre’s insistence that a blind man with no hands look for work under current legislation.

Those who fail to cooperate would face punishments ranging from losing benefits to doing unpaid community service. And those for whom the sanctions would apply range from those on Jobseeker’s Allowance to the new Employment and Support Allowance, that replaces Incapacity Benefit.

The approach has come under criticism given the worsening economic climate. Most would agree that those on benefits should not lose touch with the labour market. However, Labour backbencher Nick Palmer said there should be a “slow graduation” from helping people with health and personal problems to returning to work. He said on Radio 4’s The World at One, “What I wouldn’t think is realistic is to expect parents to have a plan to get back to work when the child is only one – I think that’s not going to happen in practice.”

The Liberal Democrats said what people needed was effective help not “tough talking and endless reviews”.

TUC general secretary Brendan Barber said: “This approach to welfare assumes a utopian world of unrestricted childcare and widely available jobs where only the lazy opt for life on the dole.

“The reality is very different. Thousands of people are joining the dole queue every day through no fault of their own.”

Nonetheless these recommendations seem to have made their way into the Queen’s Speech legislation. The new Welfare Reform Bill includes “a big change in the right to claim benefits by insisting that jobseekers, single parents and the disabled take active steps to seek work before being paid benefits.

“Benefit offices and private companies in charge of programmes to get people back to work will insist individuals sign a contract promising to go on retraining courses and attend parenting classes if necessary to receive benefits. Claimants who fail to cooperate will face reduced benefits.” (Guardian)

This has drawn condemnation from charities, trade unions and left wing Labour backbenchers. But there is little effective opposition to the continuing trend of demonising those on disability and incapacity benefits. The Conservatives want even stronger reform.

I agree that genuine help is needed for those, such as myself, when ready to return to the labour market. But there are separate issues:

  • There are those who cheat the benefits system. Catching and preventing those is a matter of law, not welfare reform as such.
  • The genuine claimants need medical or personal help initially to return to fitness, followed up by genuine help and advice to return to the market.

The approach now suggested seems to me fundamentally flawed. It appears to be based on an assumption that claimants are most likely cheats, or that threatening genuine claimants and regularly reviewing them will somehow magic away medical conditions. Such an approach if it forces genuine, ill or disabled claimants into work helps no one. They themselves may be at medical or financial risk as a result. Colleagues will end up working with people who aren’t productive (and who they may see as slacking). And employers are being asked to take a risk with their business by employing those who may not be fit to work. This could risk those in medical need becoming stuck on lower Jobseeker’s Allowance for years and eventually ending up in debt. Or of being penalised benefits if they are subsequently dismissed through ill health.

And all of that if there were the jobs to go into now and in the foreseeable future.

Oh, and the reason I couldn’t write this yesterday? Another long migraine. Go figure.

Sources

http://news.bbc.co.uk/1/hi/uk_politics/7759905.stm

http://www.guardian.co.uk/politics/2008/dec/03/queens-speech-health

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Tuesday Round-up for Friends

2008 November 26

(Even if it is Wednesday again.)

Yesterday I had my three-times-a-year review from my pain specialist. As expected, things are not looking good. The epilim (sodium valproate) looks like it’s reducing the severity and duration of the pain phase of my migraines. But it’s doing nothing for their frequency, or for the severity and duration of the aura and postdromal phases. And nothing for the persistent aura, as it turns out. So while the actual pain is lessened, the overall impact of migraines on my life isn’t reduced that much.

Anyone not familiar intimately, first hand and in person with migraine probably can’t appreciate this. So a quick recap. Migraine comes in four phases, that may overlap somewhat (skip this bit if you already know!):

  • Predromal. This is the build up to what others may think of as the main attack. It can lack any symptoms, or have subtle symptoms (such as depression, a craving for a particular food, irritability, etc.) What happens depends on the person. As I’m not aware of this phase, I don’t know how it affects me.
  • The aura phase. Not all sufferers have this phase. It can overlap or even extend beyond the pain phase. Typical aura include flashing or strobing lights, tingling or numbness. Rarely, and sadly not so rarely for me, this can include more severe symptoms such as partial paralysis or (in my case) affects on consciousness. These can include loss of language, jamais-vu (where familiar faces, objects or places become unfamiliar), confusion or other forms of hallucinations. For me this phase usually precedes the pain phase by half to one hour. Though as I have persistent aura, I get less clear warning of an impending attack than I used to have. In some cases for me, the pain phase can start a day later.
  • The pain phase. The level of pain both differs from in form and exceeds the pain of a normal headache. Untreated, it is often accompanied by nausea and/or vomiting. Sources such as an article published in New Scientist liken the pain level as exceeding natural childbirth or a gunshot wound. My own pain varies, but even the mildest severely limits what I can do. The most extreme includes stabbing pains in one or both eyes with even the slightest movement. But it is this phase that the epilim seems to be reducing. On epilim, it appears so far, I typically get three hours of pain phase per week, tending towards the milder end (which still exceeds what I would call a “bad headache”).
  • Postdromal. This can be a feeling of wellness or even euphoria. Or, as in my case, it can be an extended period of confusion and physical weakness and tiredness. Again, the aura and pain phases can overlap with this. The postdromal phase can be as long as, or longer, than the pain phase. Nothing yet tried has changed this, and this phase for me can last beyond the pain phase anything from an hour to twenty four hours.

In the case of my complicated migraine, both the pain and postdromal phases affect what I can do. The attacks range from “mild” to “severe”. Think of it as ranging from combining being very drunk with a normal hangover to beyond the worst hangover you’ve ever had and being beaten about the head with a brickbat while someone stabs your eyes with red hot needles. You get the idea. Well, so far we’ve started to do away with the brickbat and the red hot needles. But not, sadly, the worst hangover you’ve ever had. Or the being drunk. Or how often they happen.

So why are things not looking good? My specialist says that most medicines used only treat the pain phase. There aren’t that many that are used to treat the postdromal and aura phases. Then rattled off some names too obscure for even this humble wordsmith to forge into a belated Tuesday post. So he’s going to write to my GP to suggest upping the epilim dose and review me (for the last time I suspect) in May. In May. Half a job done in two years. What about the rest then? I’ll have to have a chat with my GP if the higher dose doesn’t make any impact on the postdromal and aura phases about what extra things we can try.

For me this is a problem to be solved. The physiotherapy, such as there was he could suggest, on the underlying cause of damage to my neck hasn’t helped much. The pain phase is improved. We’re getting somewhere. So if there’s medication out there, why aren’t we adding that to my regime to try to now make an impact on the remaining problem? But the best part he saved till last…

“The problem with being away from a working environment for so long is that is starts to make an impact on one’s quality of life.” He said. Obviously I’m paraphrasing as I don’t recall the exact wording. “Things have improved on how they were. In August when off the epilim for a while, you were having daily migraines. Now they’re about two days per week. At some point you need to test the water.”

Test the water!!!?

What employer would take me on while I will still be off, without predictability or warning, an average two days per week? And how is it reasonable to expect one to? What I need is the job completed, the problem solved so that I can get back to work and be there every day of every week again… bar the odd day here and there as before. Not to mention the unimportant point about how the social isolation of this illness is affecting me as a human being.

How about we test an extra medication regimen?

I’m angry.

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Tuesday Round-up for Friends

2008 November 18

One of the most frustrating things about migraine, frequent or not, are how they stop you doing things. Things you must do. Things you should do. Things you’d like to do. You can prioritise your life; but migraines just stop you indiscriminately. I’ve more or less now given up for the time being doing anything that involves travelling – even just a few miles. I don’t drive (and recently gave up my licence voluntarily because of my health). So I rely on public transport. That means if I fall ill, it can be some time before I get home again. Or, if I decide to find somewhere quiet to hole up, I could be very ill and having to travel on the last bus or train home. And that’s if I can find somewhere to hole up. Not a problem, perhaps, if you get one or two a month. But when you get one or two or three or more a week, things get more complicated.

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Tuesday Round-up for Friends

2008 November 4

My sister visited last week. It was nice to go out for a drive. It’s surprising what you can get used to not doing after a while. We had thought to go collecting chestnuts from the edge of the public woods. But there weren’t many and what there were were small.

My back isn’t anything serious (unless my specialist says otherwise when I see him in a three weeks). Just stressed nerves from the change to a more sedentary lifestyle. The physiotherapist is a lovely young woman. She’d just moved to my home town to fill the post, and it was her first day! And she got me, poor thing! She’s given me some exercises to do to help relax the muscles, and suggested I work through any pain rather than resting.

Now I’m off to contemplate staying up to watch at least the East Coast results come in of the US election. I wouldn’t normally, being a Brit and five hours plus ahead. But this isn’t an ordinary election.

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Tuesday Round-up for Friends

2008 October 28

This week (in the UK) the government begins changing over to the new Employment Support Allowance (ESA) system. This will gradually replace Incapacity Benefit (IB) and Income Support (IS) for those incapable of work. Because I’m an existing IB claimant, I’m not moved over straight away. But if your a new claimant for “incapacity benefits” you will be going on ESA.

Can I suggest any reader going on or thinking about going on ESA first joins the Benefits and Work website? At the time of writing, it’s annual charge for membership is £18.95. But you will have access to a lot of stuff obtained under the Freedom of Information Act. Click this link to visit to assess it for yourself: http://www.benefitsandwork.co.uk/

At any event, you would probably do well to go to an advice centre before claiming. Something like Citizens Advice. My own experience and that relayed by others generally when it comes to benefits is that you should not rely on or trust the JobCentre Plus or Benefits Delivery Centre services. Doing so may cost you lost benefits.

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Tuesday Round-up for Friends

2008 October 21

Having a small “financials” week: Going through my spending to see what I can save. (I do the big one, which usually involves looking at switching energy supplier, in November.) My main aim was to juggle finances so I could spend £5 extra a month to upgrade from 5Gb to unlimited bandwidth on broadband. Only. The Post Office say they don’t allow customers to upgrade until their one year contract comes up for renewal. So, although I want to pay them about £60 a year more, they don’t want my money until May next year.

Never mind, I’ll put the £25 or so I saved into my ISA. But what a strange way to run a business. I could understand them not wanting to allow someone to downgrade an account, but upgrade? Ah well.

On an unrelated note, I was meant to go to my first mindfulness afternoon at my local Buddhist sangha group on Sunday. Sadly, the inevitable happened and I had a migraine. In any event, when I went for a short walk in the afternoon to clear my head, my back went again. So I probably wouldn’t have even made my local rail station anyway. It’s frustrating how my health is preventing me doing what I want, never mind what I should do.

I only hope when I get my physiotherapy appointment through, it’s in my local hospital.

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Tuesday Round-up for Friends

2008 October 14

No Tuesday round-up this week, as my Thursday Series post is a day earlier. I’m working on that post instead.

Tomorrow is Blog Action Day 2008. This year’s theme is poverty. Find out more by clicking this link: http://blogactionday.org

Or click on the link below:-

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Tuesday Round-up for Friends

2008 October 7

Two medical related things happened this week.

First, my headache/migraine specialist replied to my letter. I’d written to him asking how I should update my Incapacity Benefit (IB) claim in my new questionnaire. I also updated him on my recent diagnosis of persistent aura (persistent aura without infarction, also known as persistent migraine aura). I’d also mentioned back spasms I’d had many years ago. I wrote to him before seeing my GP (family doctor) about the new lower back problem I’d started getting. So I didn’t include that in my letter.

So the second thing is that I saw my GP about that back pain.

I now think I understand where my specialist is coming from. I couldn’t understand why he was focussing on my neck and shoulder pain and mobility problems. I had been referred because of what my GP had thought were frequent and severe migraine. He replied that he is “one of a minority” who think that neck pain is the source of a wide range of headache problems, including migraine. Even though migraine clearly has a neurological pathway, he believes these are triggered by neck pain. Other opinion in medical science as I wrote about in my Saturday SeriesMigraines” includes the trigeminal nerve as “central to the mechanism”. But they don’t all agree that this is the cause of migraine onset.

He also said that persistent aura “is a well recognised condition” and that “neither the causes nor the remedies for it have been agreed in current medical practice”. But he did say that there is research into persistent aura to try to understand it better. He finished by saying that he thinks my headaches are therefore migraines. So I only need add the neck and shoulder pain and mobility to the new form if I think it adds to my inability to work beyond the migraines.

Which leads me on to my GP appointment. He examined my mobility and pain. It looks like I have, superficially at least, a similar problem in my lower back as my neck and shoulders. The nerve root is causing pain which limits my mobility. That pain then spreads to my general pelvic area and my legs as I stand or walk for any length of time. Sitting or lying down relieves the discomfort. He has prescribed physiotherapy as a first step. I am now waiting for the appointment for that to come through.

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Tuesday Round-up for Friends

2008 September 30

Not a lot of people know this(?)

(This is a longer post than usual and may be of interest to anyone claiming Incapacity Benefit (IB) in the UK where severe migraine is part or all of the claim.)

In the UK, welfare benefits like IB are decided by a points system. The system is now changing, but as far as I know it’s still a points system. (Unless you know different!) Anyway. To qualify for IB for a physical incapacity you must either:

  • Score a minimum of 15 points, or
  • Satisfy a government hired medical practitioner that your need is sufficient.

My IB is now up for what is called normal review. When this happens depends on how you last qualified. But the minimum period seems to be one year. As part of that review I once more have to complete the questionnaire on my health. It’s called a personal capacity assessment (PCA), and officially labelled an IB50. (The form itself is titled “Incapacity for Work Questionnaire“.)

After the problems I had previously with claims, which I won’t go into here, I thought I’d look around for advice. One site I found is Benefits and Work, included in my Migraine FAQs page: http://www.benefitsandwork.co.uk/

Benefits and Work use the UK’s Freedom of Information Act to find out what the Benefits Agency don’t tell you. This includes this points system stuff. It turns out that although I now know I have two conditions causing headache, migraine may score some points under “fits or something like this“. The section includes a box where you can write more information if needs be. Benefits and Work say in their booklet (from the government’s own guide) that this refers to “an involuntary episode of lost or altered consciousness“. They go on to point out (one of the site’s creators is a barrister): “the law in this area is rather confused, but it may be the case that vertigo, severe migraines and other conditions that cause ‘altered consciousness’ may score points under this activity.”

Now in order to make a lawful claim, you must answer the question honestly and as completely as you can. This means you can’t claim to have epilepsy instead of migraine, for example. But it also means that you should answer if you have severe migraines. That’s what the box is for. Looking back on my migraine diary, I can honestly tick the box for “I have a fit or something like this at least once a month” (on average). Or certainly “I have a fit or something like this occasionally”. I will then complete the box with more information. Why?

Again, from the government by Work and Benefits, the system as it stands awards:

  • 15 points if you have a “fit or something like this” at least once a month,
  • 12 points if you have had one at least twice in the last 6 months before the claim date,
  • 8 points if you have had one once in the last 6 months before the claim date.

It is then up to the Benefits Agency to assess whether the episodes reported qualify. To give non-migraineurs who may not understand how migraine could qualify under this I’ll give you examples of those altered consciousness I have had which fall in that 6 month period:

  • 2008/04/24: Aphasia – complete loss of ability to use or process language,
  • 2008/07/11: (1st attack) Aphasia and confusion,
  • 2008/07/11: (2nd attack) Anxiety and a sense of a malign presence in an empty room,
  • 2008/07/14: Hemiplegic attack followed by aphasia,
  • 2008/07/28: Hemiplegic attack followed by jamais-vu – where things, places, people that are familiar become unfamiliar – and partial inability to recognise faces or understand written language.
  • 2008/08/11: Sense of a malign presence in an empty room,
  • 2008/08/21: Confusion.
  • 2008/08/24: Hemiplegic attack followed by confusion.

I also suffer a general malaise with and after migraine. This also affects my ability to think, and has affected me generally 20 of the 69 days since I started by detailed diary on 23rd July.