Welcome to Ron’s Rants…
This is me – Ron – A change from my previous grumpy pic.
The photo above, shows a pair of mallards in breeding plumage, taken at Royden Park, Wirral, in May 2008, pretty much the last time I was able to indulge in any serious photography.
NOTE: In the archives, you may see some apparently random characters in the posts, near the left-hand margin. These are formatting aids – the only way to get double or triple spacing is to insert a letter or symbol (currently I use three asterisks), one set for each line – and change the colour to white, so it doesn’t show,** as there’s no other easy way around the default single spacing.
**It does mean that if your blog has a background other than white, they’ll be visible. Can’t be helped, I’m afraid.
For some mysterious reason, they DO show in some archive summaries, and I’ve no idea why. They don’t show in the posts, though (if they do, please post a comment and tell me – it means I’ve missed them!).
I’m an ME survivor (so far anyway), 27 years and counting. I’m – at the time of writing – totally housebound. This restricts me to mostly sedentary pastimes – reading, blogging here, my website here (neglected these days, but still remarkably popular for some reason), and cooking when I can, which isn’t as often as I’d like.
I also survived a lightning strike in 2003, Er, no, I didn’t. I survived it in 1983, which I believe caused my ME, and left me with a large amount of physical and CNS damage. My feet were, quite literally, fried – the fatty pads in the soles were melted, with means that the only thing cushioning the bones of my feet is a thin layer of flesh and skin – and yes, walking as about as much fun as it sounds. It’s like walking on ball-bearings. Damage was also caused to most of my joints, resulting, as I get older, in widespread osteoarthritis.
I have recently (March 2010), bought a mobility scooter, so I should be able to get out more. (Didn’t work out!)
I also have Stage 4 COPD, the precursors of which – asthma and bronchiectasis – resulted from simultaneous whooping cough and measles at age 2, either one of which was capable of trashing my lungs. Together, I was seriously, and almost inevitably, screwed.
If I’m ever able to get out, my primary interests are birding and photography (digital), and beer, of course, as they fit my current abilities. There used to be others, like camping and fishing, but they’re now out of reach. At present, most things are on hold, as I can no longer drive, and I’m trying – without too much success – to adjust to life with large chunks missing.
I used to write a magazine column, about computer matters, for people with ME (CFS if you’re American), but now I put all my effort into my blog and website. I used to operate an email advice service for people with ME and computer problems, which ran for about five years and have only been stumped once. Thanks, Steph!
My experience with ME will, obviously, feature here from time to time (the more so now – August 2008 – as I’ve quit the blog on my website, see below, to concentrate all my efforts here; don’t worry, anything that would have been posted there will appear here, no-one will miss out on anything), as will items of interest to people with ME (I hate the acronym PWME – Person/People with ME – by the way – it’s ugly and looks as if it might be a Welsh epithet!), and items relating to my hobbies or which have simply sparked my interest. I won’t be using the term CFS (except in the form ME/CFS, for the convenience of non-British readers), as it’s criminally misused by the UK medical profession.
Update January 25 2010:- The above para was true when I wrote it, but it’s COPD which has come to dominate, earning me a Top Health Blogger invitation from Wellsphere, and getting me a rather nice pat on the back from the pros here.
So, I have severe Chronic Obstructive Pulmonary Disease (COPD), as well as ME, which, by definition, features emphysema, which slows me down rather a lot. As much of the blog is devoted to COPD, I’ll leave that for now.
I had a blog, on my own website, Ron’s Realm, here which is in its seventh year. It’s proven pretty popular but I felt it was time to reach out to a wider audience. I’d also appreciate feedback, which I haven’t been getting in the original format. Eventually, I decided to pension off my original blog and concentrate on this one. The numbers show that not every visitor to Ron’s Realm is clicking through to here, despite putting a link on pretty much every page, which is a pity, as they’re missing out on a lot. It’d boost my numbers too!
If you’re at all curious, and want to find out more about me, there’s a biographical page here that will tell you more than you ever wanted to know. For those who worry about such things, I’m 67. I hoped to get a lot older, but having been diagnosed with congestive heart failure and aortic valve calcification this year (2011), that’s pretty unlikely. The 2-year survival rate is 50% with my symptom-set, and adding in my COPD is going to put a dent in that.** I’m going to try to get someone to manage this blog once I’m gone, the biggest problem being is WordPress decide to dump this theme, which means someone will have to transfer everything to a new theme ot the blog will cease to exist, and a huge amount of information will go with it.
**Actually, after being considerably buggered about by cardiologists, I’ve managed to sort out my medication myself, and for the first time since being diagnosed, I’m stable (as at December 22, 2012), and feeling rather more positive about the future – as in actually having one!
And yes, I do know I can be opinionated – that’s a given!
My health and/or benefits-related posts are by far the most popular, by the way, but there’s lots more than that here so, if that’s what brought you here, and even if it’s not, stick around and have a rummage in the archives – you might be pleasantly surprised…
Do check out my website, too, as I can post stuff there that might be thought contentious, that I can’t get away with here, without bending the ToS. There will always be a post containing a link, when that happens.
sorry – don’t think you have the link on this blogpage but i wanted to say thank you for making me and a small band of others not feel alone when we say DON’T FOLLOW OR THINK ABOUT TOUCHING THE GP plan for the supposed cure for FM or ME. sadly my science brain was not working the day i bought the book but luckily i had the sense to discuss it with my consultant and own doctor who both said Don’t touch it – drinking petrol would be better for you ! mmm nice wouldn’t fancy drinking petrol, but hey ho you try anything once and hope it doesn’t kill.
there is a reason you have to buy those pills on the internet – it’s because it is not licensed here in it’s pure form!
Note for other readers – Sophie’s comment relates to the Guaifenesin Protocol pages on my website. As she says, there’s no way to post comments on the website (there used to be but it was unused for a couple of years, so I dumped it), so all the material has just been posted in this blog, in 3 parts, so comments are now possible – abusive comments, as always, won’t see the light of day, so please don’t bother.
Part 1 is at https://ronsrants.wordpress.com/2008/11/14/the-guaifenesin-protocol-part-1-of-3/
If you’re thinking of trying the GP – don’t. For me it triggered an agonising ME/CFS relapse that, almost 2 years later, I’ve still not entirely recovered from. I can’t stress this too strongly – it’s dangerous. Almost as bad, it’s expensive and has been proven to be no better than a placebo (see part 3).
Love the blog 🙂
Sammy – what can I say? You have excellent taste 😉
Hello Ranting Ron,
I remember you from the MEA magazine. Ah, the MEA Board of Trustees – don’t you just love ’em :o(
There is much to love about WordPress.
But I also find the lack of control for line spacing in the editor frustrating, as using br tags or self closing br tags are stripped out by the html editor when the text is saved and so the desired spacing is not fixed.
This is what I do and it works for me using Firefox or IE6.
For unjustified text composed straight into the html editor, or pasted in as plain text, or composed in RT editor, then switched to display the text in html
without the brackets, for each additional line space required.
It works for me in templates Andreas09, Black Letterhead and Mistylook.
I have two undeveloped sites which I use for testing here:
and here (this one is set for template Mistylook)
and both are currently displaying a post using one, two, three and four line spacing.
When the text is saved, the html editor will strip out the
code as it does br tags. However, unlike br tags, the inter line space should remain fixed when the post is published. If you subsequently edit the post, you may need to add the code back in again.
If you’re quick, as the text is being saved, you may spot the code being changed momentarily to a br self closing tag, which is then stripped out by the editor. But the memory of the initial tag, is somehow retained and the spacing remains fixed. (I don’t have the coding tech knowledge to know why this should be.)
Using a single white character to fix a line space is probably the simplest option but not an option for those of us using Andreas09 which has a pale grey background to the text. I’ve not yet established the hexadecimal code for the background colour for Andreas09 but in any case, it would be more of a fiddle to specify a non standard or named colour than adding or pasting in a bit of spacing code.
If you’ve already cracked this, then apologies, but your readers may find this of interest. There have been a few threads in the WP Forum discussing this very issue. Let me know if it works for you.
That reminds me – About needs an update…
Thanks for that, but for those of us for whom HTML might as well be Chinese, a white letter is a reasonably elegant solution. As long as, as you say, the background is white. Looking at Andreas09, the text area shows as white on my screen, so I snipped a portion out (with Gadwin Printscreen), and pasted it into Word – and it is just very slightly not white. I wonder why? The colour is so subtle I doubt it would reduce screen glare appreciably, which makes its not actually being white a tad pointless. Or maybe that’s just me…
Yes, the background for the posting area on Andreas09 isn’t all that far off white. Though on my own screen, the contrast is about equal to that of the white of the Reply box I’m currently typing into compared to the pale blue that surrounds this Reply box.
But if I were paying for the CSS upgrade, I probably wouldn’t change the background to white in order to be able to make use of a white character to fix line spacing. One of the reasons being, that when readers C & P text from my site into a Plain Text email to save or forward the content of a posting any white characters inserted in order to fix line spacing would become apparent.
Hmm… Fair point. Not thought about that, as I always use HTML because I want my text to appear as I intended, formatting and all. I don’t want to sound arrogant, but everything I write gets the same degree of attention, from a 50-word email to a 4,000-word post, and formatting matters rather a lot to me.
I know Plain Text has traditionally been seen a more secure medium, but these days, when viruses arrive in the form of attachments or links, more often than not, I think any perceived advantage is pretty minimal. Text isn’t just words on a page; it is, to a degree, visual speech, including a few of its modifiers and stresses (insofar as that’s possible) – Plain Text strips that out, and then it really is only words on a page.
I don’t, I think, over-use, for example, italics for emphasis, but when they are used, there’s a good reason. Anyone viewing one of my posts in Plain Text might get a bit of unwanted formatting in the form of the occasional m (though my need for double-spacing is minimal, and only a few posts are affected), but they’ll also be losing intentional formatting, so what they see has a good chance of being not entirely what I intended.
Rich Text emails, incidentally, retain my double-spacing without showing the m.
Right, I’ll put my soapbox away now 😉
By the way – don’t think I’m having a pop at you, I’m not; I’m also writing for everyone else who’ll read this.
As a graphic designer, formatting is equally important to me, whether we’re talking about websites, blogs or email so I’m not advocating the use of Plain Text for email or the use of minimal formatting.
But when material from my site gets forwarded or reproduced elsewhere, whether on other sites, in emails or on forums or message boards, if it’s been copied into or forwarded as a Plain Text email at some stage (over which I’ve got no control), not only does the formatting get stripped out but any “invisible characters” used as line spacers would also become evident. I cannot rely on others to necessarily spot these and edit them out before they make use of the material, themselves.
My own site publishes formatted content often from documents or notices provided to me or already in the public domain and I try to retain the formatting of source material, as far as possible. Material may also contain extracts from research papers, official documents, reports etc as well as original commentary. So it’s particluarly important for me that odd characters don’t start appearing where they did not appear in the original documents in order to maintain the integrity of the source material – although a few dashes probably would not hurt.
If you know of a site that analyses colour samples to determine hexadecimal code, I would still be interested in establishing the background colour for the Andreas09 template as I’ve not been able to establish this from the source code CSS and I don’t really want to trouble the template’s designer. I can pull up the colour in Inscape but the colour code it gives is not hexadecimal.
I agree, but re your second para, I would hope anyone who copies material from my blog or elsewhere, would have the wit to preserve the formatting. As you say, though, if they don’t, there’s nothing to be done about it, so. . .
Several of my COPD posts have been reproduced (and credited), on US healthcare websites, and those I’ve seen have been fine. Mostly, though, people just post an excerpt and link to the items, which obviates the problem. What people who follow the links will do – well, that way madness lies. . .
Re the colour – why not ask the designer? By the way, I’ve just made an intriguing discovery. I had a look at Andrea09 in Manage Themes, and right-clicking the designer’s name, then clicking Open in new tab, doesn’t take me to his blog/website, as I expected, it puts up my blog in Andreas09, without my actually having to change my theme – and it appears to be fully functional. I’ve tried a few other themes where the designer’s name is shown, and they do the same thing. Looks like a very useful way to try out new themes without actually changing one’s blog at all.
“I would hope anyone who copies material from my blog or elsewhere, would have the wit to preserve the formatting. As you say, though, if they don’t, there’s nothing to be done about it, so. . . ”
Quite so, but it’s a particular problem on message boards or e lists that strip out formatting or only accept messages in Plain Text, or where messages are often posted via Plain Text emails.
I’ve just had another look at Inscape (which I downloaded only recently) and the “Pick colours from image” tool gives a #XXXXXX value so I’ve tried this and I have now established the code for the background for Andreas09.
For anyone who needs it, it is #fafcff
WP introduced the facility for previewing your site in a new template a few months ago, without the need to effect the change, but I’m not sure whether these previews are fully functional – will have a poke around in Manage Themes.
There are one or two tweaks I’d like to make to Andreas09 but whether I’m ready to take the plunge into CSS, I’m not sure – might end up screwing the whole thing up.
@ “Quite so, but it’s a particular problem on message boards”
Indeed – I understand the problem – I just think it’s fruitless fretting over what we can’t control.
@ “WP introduced the facility for previewing your site in a new template a few months ago, ”
Hmm, must have missed that in the whole raft of changes that accomplished very little. This, at least, is useful.
Led here by a stressful search for solace and calm!
You’re bookmarked now, Ron, and I’m looking forward to casting an eye over your website and the rest of your blog asap.
I hope your illnesses are allowing you to have a reasonably ‘good’ day.
Just got back online after a 5-week absence. Lots of stuff written while I’ve been offline, which I’ll be posting over the next couple of days. Hope you enjoy it.
ron is it true they dont give dla for severe anxiety
Just like any physical condition, mental illness depends on the degree of disability for DLA. That’s the sole criterion, no matter what ails you. So, my advice would be to apply – or reapply, looking at your next comment. My advice, as always, is not to fill in the form if you feel you need to expand on your answers. I write “See attached” in the answer box, and type up the answer comprehensively on a separate sheet, or sheets, of A4. Just be sure to put the question number against each answer and put your name and NI number at the top of each sheet. Much easier these days than the first time I did it, with a typewriter.
You can also download an application form to complete on your computer, which means you can tinker with it as much as you like, to get it absolutely right. You’ll find it about two-thirds of the way down this page http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011925
By the way, I do know, personally, people who are mentally ill with conditions which include severe anxiety, who have successfully claimed both mobility and care DLA, so it can be done. In much the same way – this may be of use to others, if not you – mental health problems can even get you a travel pass, because they can be just as much a disability as physical problems, albeit in a different way.
ron can you tell me if i have been turned down by a tribunal and reapply 15 months after will thay still have my records on file
To be honest, Barbara, I don’t know, but maybe not – keeping failed claims on file means a hell of a lot of paper, and a lot of expense if they microfilm them. Even if they do, every application is supposed to be assessed on its own merits. Still, it’s hard not to be a just a tad paranoid. I think, on the whole, they do play by the rules, though.
When I applied for DLA I was turned down the first time but, the next year, I was awarded it for life (well, it was actually Mobility Allowance then). So the fact that you’ve already been turned down shouldn’t matter.
By the way, are there any mental health groups in your area who could advise your about your claim, and how to maximise your chances, or a national support group, even? If not, it’s worth talking to a benefits advice group, who are almost certain to have something useful to offer, and maybe an advocacy service if you feel you need help (benefits advice and advocacy are generally free services).
Hi I love your grumpy picture. I recently found your blog and wanted to reach out. I’m the blog coordinator for EverydayHealth.com. We’re currently recruiting patients and experts to write a weekly blog post about bipolar disorder and I thought you might be interested.
Everyday Health has over 25 million monthly unique visitors to their website, and there is a lot of potential exposure and traffic to come from blogging with the market leader in online health information. It’s also an excellent platform to promote awareness about bipolar disorder and any non-profits or other related entities.
Let me know if this is something that you’re interested in and might like to talk more about.
Thanks, Lee, but what I know about bipolar disorder you can engrave on the head of a pin – and still leave room for the Lord’s Prayer!
ron it is barbara again to claim dissabillity or apply again do i have to have the support of my family doctor i have had severe anxiety for over 7 years and only been to see a councillor at the hospital when it first happened but some one told me it is no good claiming unless i have seen a pyscriotist thank you barbara
These days, it seems you do, and of any consultants you might be seeing. Doctors now seem to be routinely consulted by the DWP. A psychiatrist would be useful but in my experience (my wife was severely mentally ill), shrinks can’t always accomplish as much as people think. If your GP is on your side, that may well be good enough. If you can put off claiming for a while, and get a referral to a psychiatrist (if you can face the idea – not everyone can), then it would probably help (or perhaps your GP can explain if he thinks it might be bad for you).
Whatever, I don’t see why you shouldn’t apply. You might not get it if you do apply, you definitely won’t get it if you don’t.
ron how do i send your page to look at to my daughter by e mail it doesent say send to a friend ore mail a friend barbara
Easy – just left-click the address bar – that will hi-light it – then right-click and Copy. Then you can paste it into an email (right-click – Paste). Done.
Any problems with that – get back to me.
ron dont think i am mad but where is the address bar barbara
Yep – had a feeling you might say that!
OK, when you’re looking at a website – or a blog – your browser displays the address – the URL – at the top. It’s the bit that starts http://
You cool with copying and pasting?
I just wanted to thank you for your blog about the Lightning Process. I have been pressed by a couple of its proponents to do it – ‘it would definitely help’, they said… In the end I felt like if I didn’t do it then I had only myself to blame for still being ill. So I phoned the local ‘therapist’. She basically said what you said – if I got better with it, then it was down to the wonders of the LP; wheras if I didn’t then it was entirely my own failing. This rang alarm bells to begin with, but she went on to tell me that, after curing my ME, she would then help me ‘tackle my Asperger’s Syndrome’!!!!! So now there’s a cure for autism. WOW! This made me so furious I could barely speak for several hours afterwards.
However, even after that, part of me still felt that I ought to have done the LP. They really were effective in convincing me that it was my own fault I was ill because I was clearly ‘too scared of getting better’. Which apparently was ‘perfectly understandable’ and I wouldn’t be accepted for the course anyway unless I was absolutely determined to stick with it until I got better (i.e. if I didn’t get better, then I must have given up because the LP itself is 100% successful).
Anyway, it really set my mind at ease to read your blog because before that I kept wondering if my skepticism was really just to hide from myself my ‘fear of getting better’. For god’s sake, I don’t know how I could be any MORE determined to get better. If anything, it’s my own downfall because I tend to push myself TOO hard in the attempt.
Well, thank you for sharing your opinions. It was hard for me to be objective, but now I’ve read what you say, it seems so obvious what a sham the LP is, and a very lucrative one, too!! Thanks for helping. (Sorry about all the quote marks but I needed to show the words weren’t my own.)
Don’t worry – no problem with quotes. Sadly, it seems that your experience isn’t unusual, and it’s a basic premise of the LP that if you participate and fail to get better, it’s pretty much your own fault! As for curing autism, that’s a hell of a good trick!
That, in my view, should be passed to your local Trading Standards, if you have it in writing. Not much point if it was verbal, it would probably be denied, but a very good case for misrepresentation if in writing. You should be able to find Trading Standards on your council’s website.
You could, if you feel able, probably get it in writing, if you haven’t already, by opening a dialogue via email.
Can you email me I need to get some help since I’m planning to return back to the UK & need to know what I would qualify for in benefits
Current situation healthwise
I’m 62 living in Canada have severe Ostio in both knees (cant walk more than 25 feet without a sit down & breathless) which they say may/might be fixable, but on top of that have zero hearing left ear and 25% right ear ++++ chronic bronchical Asthma developed from living in the NW England as a child
For some reason your comment wasn’t flagged. Anyway, unless it’s something confidential, I reply in this way as the info may benefit others, too.
In answer to your first question, you don’t actually qualify for anything, nobody does. What you can apply for, though, is something else. What gets you disability benefits is not whatever illness you might have, it’s the degree of disability it/they cause. It’s an important distinction.
First of all, there’s Employment and Support Allowance, which is predicated on a certain minimum of National Insurance contributions see http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/esa/index.htm , as is Jobseekers Allowance – see http://www.adviceguide.org.uk/index/life/benefits/national_insurance_contributions_and_benefits.htm#which_contributions_pay_for_which_benefits For both, without NI contributions, life gets complicated. If all else fails, there’s Income Support.
Then there’s the question of nationality. If you’re a Canadian national, your benefits entitlement will be the same as any other immigrant – sorry, don’t know what that is, and any information is buried in reams of racist crap online, nor is there any info on Directgov, the best source of basic benefits info. If you have British nationality your rights are the same as anyone else. Ditto dual nationality, presumably.
Disability Living allowance isn’t based on NI contributions, but my feedback suggests it’s increasingly hard to get, no matter how sound your application is. The mobility component of DLA is based on the ability to walk, there’s lots of other stuff on the form, but that’s the bottom line; the care component is rather more complex. You can download a form here http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011925
Be aware that you will almost certainly be subjected to a medical examination, in which your medication will play a major part – essentially, if they think your meds aren’t adequate for the degree of disability you claim, bang goes your claim. Personally, I think that’s bollocks, but that’s the way it is. You will also be expected to demonstrate the veracity of your claims vis-a-vis disability. For example, they are very likely to take you for a walk. Saying No, I can’t walk! is a fail. They have to see for themselves. Yep, you’ll suffer, take on for the cause. In addition, doctors, I believe, no longer rely on their own experience – because they mostly haven’t got any – and work to checklists instead.
You can claim DLA as long as you are under 65, but not on your 65th birthday or afterwards. Then it’s Attendance Allowance. If you get DLA before 65 it carries on.
No idea what benefits, if any, your hearing problems might get you (my areas of expertise are COPD and ME/CFS, with a side-line in osteo-arthritis). These guys should be able to help http://www.rnid.org.uk/
Then there’s the question of accommodation. If you have somewhere to live, or can stay with friends or relatives, then that won’t be an immediate problem. If you have/can get accommodation then you can, I believe, apply for Housing Benefit and Council Tax benefit. Apply to your local council. Note that many private-sector landlords won’t accept benefits claimants as tenants.
And that’s about it.
People, please post comments on the blog post appropriate to the subject (there’s a search box top right on the home page).
Posting comments here means most people won’t benefit from either your questions or my replies. So, come on, play the game – I don’t want to have to close down comments here.
Rosie, by the way, who posted the first comment, had no choice as there was no appropriate page for her to comment on.
appreciate the long detailed info
For other posters I was born in merseyside, although I’ve been in Canada for what seems a lifetime (early 20’s) I have kept up the NIC’s and have 27/30 years of contributions & still hold a CUKC (Brit) passport.
Yes, I understand also about the HRT (Hab residency test) to qualify for housing benefits etc.
As fas a NHS is concerned they emailed me back yesterday to confirm “no problem” when I come back to go to a doctors surgery make the application to get on the register, get the physical.
As for DLA etc, apparently there is a six month wait period (need to be 26/52 weeks in the UK to qualify)
Now its go look at the home page & key in the ‘topic’ such as ‘benefits’, surprised what popped up
Thanks again Ron – nice blog you have & keep on trucking (keep as well as you can)
Hi Ron – I found you via a search I was performing on Google to try and figure out why my blog traffic suddenly dropped. I’m thinking perhaps I’ve relied too much on search engines (particularly Google)::: there was a time (2005) when if I pinged Technorati I’d grab a boatload of traffic. That vanished around the time they began accepting MySpace pages as blogs. For awhile during 2006 and 7, if someone “Dugg” pn eof my articles I’d get lots of traffic… those days are gone too. I was never good at attracting either subscribers or commenters, although I’ve gone to great lengths to accomodate them. Did you and the other WordPressians ever figure out what caused your blogs’ numbers to drop? Maybe that’s what’s happening to me and other blogspotters right now. I am glad to have run across you and your blog! Thanks for allowing me to vent here!
Stats seem to have been stable for a while now, so hopefully we’ve seen the end of the buggeration. What pisses me off, though, is that moans normally get a “looks OK to us” reply! Not helpful.
I am in accord with a lot of what you say, but it is the kosher drugs that are the problem, bronchodilators are lethal. Do have a look at my website!
Keep up the good work and I would appreciate it if you will spread my message!
Sorry, but telling people bronchodilators are lethal is, frankly, fucking criminal. Were it not for them I’d either be dead or profoundly disabled. At the age of 17 I was told that I would be dead before I reached 40. It’s only the progress made with bronchodilation drugs since then that’s kept me alive, and functioning.
I’ve deleted both your URL and your contact details. If people want to put their health, perhaps their lives, at risk they can do so without my help.
Hi just came across your wonderful sight and I have a question I hope you can help me with,… I get high rate mobility(cannot walk far without server pain dues to 26 ops and adhesions etc etc) and low rate care ( indefinatly for life)I want to apply for high rate care because I have bowel incontience and need help to change bed clothes , shower and dress during day and night ( my daughter does do it when shes here in the night or day( shes at college in the day) other times I have to manage , I now have been ( sort of) diagnosed with fibromyalgia and when I have a flare up she has to dress me..and undess me and even cut up my food and hold a cup or glass for me … i have clinical depression and anxiety and tired to take my own life.. if I apply for high rate care , would I have to start from the beginng and as if a new claim for both mobility and care or just tell them about my worsening situation?
Well, that’s an easy one – you have to reapply for the whole package – you can’t just apply for bits of it.
And there’s a risk – more so now than before – of actually losing some or all of what you have now.
It does say, on your annual notification, that you should tell them if your condition changes – so you could try that. A very good chance they’ll just send you an application pack, but worth a try.
Be aware, though, that they do take your medication into account in ways they never did before, and if they consider your degree of medication doesn’t match the degree of disability you’re claiming, you’re going to have problems.
Bottom line – you have to decide if it’s worth the risk.
In the forum today, you wrote
“If you get hopelessly mired, click through to my blog and I’ll talk you through it. Get me on the About page.
NOTE: That’s just for this one person.”
I know I’ve seen you in the forums from time to time, but as a long-time volunteer, I’d caution you against doing such one-on-one assistance.
For one thing, you are spending as much time providing help for only that one person, whereas if you did it in the public forum many people could read your answers—I know when I first started I read the forum for answers without asking questions: it was useful.
Of course, this is up to you, but I am not the only person who would tell you the same thing.
I take your point – I’ve made it myself in the past – but at the moment, for me, it’s the best way. I don’t know how much of my blog you’ve read, but I’m seriously ill and not getting any better (especially right now), one reason you see me on the forum only occasionally. One to one, it would happen at my speed, which may not be the forum’s speed, and I don’t see it as any more than expanding on what I’ve already said on the forum – I certainly have no intention of running WordPress 101!
Oh, I did not think you were intending to run WordPress 101!
I did read about your illnesses. Wow. What a life. I am glad you are blogging—you are witty. And kind. Nice to ‘meet’ you then!
I’ll admit that I have helped several people who contacted me via my contact form. For the most part it has been rewarding—specific but odd formatting questions (to look like something on my blog), or questions that have been answered in the forums about 1000 times.
There was only one fellow who became very persistent, asking more and more different topic questions. He was doing the same at the time with Panos. Ppffff. I had to tell him nicely that I’d love to answer, but it would have to be in the forums. As did Panos. It was better for everyone after that.
Thanks, Tess – always nice to be appreciated.
Yep – one -on-one can be very rewarding – I used to be an adult literacy tutor, and the urge to teach still hasn’t gone away, which is probably why I got a bit carried away!
Re your last para, you might have seen the sticky post? I was pretty much forced to write that as, while I firmly believe that knowledge has little value unless it’s shared, the thing was, quite literally, taking over my life. Anyway, when it comes to disability benefits and COPD, pretty much everything I know I’ve already written, and I was finding myself writing the same thing over and over again. These days I only respond to items that don’t need me to write two or three thousand words, and I don’t get personally involved. I’m not happy about that, but that’s the way it has to be.
I do think, though, that one of the stickies over the forum should say, in letters of fire, RTFM! Whatever happened to the days when asking for help was a last resort, rather than the first choice? Or is that just me?
Dear Ron…I too have the intercostal pain, I live in a constant state of muscle injury from the horrible coughing that goes along with my COPD. I have had COPD now for 13 years and am female. I used to have a 32 inch chest. Now it’s 39 inches. I can’t wear a bra because it causes so much pain. I dont understand why doctors dont think COPD is not a painful disease! It is! My breathing muscles are in constant pain from working hard to keep me breathing and I have a permanant inury to those muscles. Someone posted on here to take antiimflammatories..Who are they kidding? Those don’t treat the pain nor the underlying cause. I sympathize with you whole heartedly. COPD is a painful disease and the sooner the medical community gets a clue to that the better treatment COPD sufferes will get. I am frustrated because I have been mistreated by the medical community and under treated. I am hoping that will change because I cannot live in this kind of pain.
Yes, unfortunately, long-term respiratory illness can change your body shape. My abs are hugely overdeveloped from a lifetime of coughing – not so much a six-pack as the whole cask of beer – and, even without the steroid weight, I still look as if I have a small child up my jumper 😉
Pain, though, is capable of being managed. Not totally relieved – few things accomplish that (an acquaintance of mine has an implanted morphine pump, and still hurts, though nowhere near as much as she would without it). I take Dihydrocodeine Continus (DHC), Naproxen (NSAID), and 30/500 Co-codamol (plus Paracetamol as a top-up for my DHC – makes a giant Co-codamol), and I still get a huge amount of pain but – again – not near as much as I otherwise would. Anti-inflammatories do work, but they take time to build up their effect with some people (I’m one of those people for whom meds work almost at once or not at all).
The Naproxen I currently take, I import from the US (a little over a tenner for 400), because my GP won’t prescribe them after a gastric bleed (which was nothing to do with NSAIDs). Though they’re somewhat weaker than the ones I was prescribed, for some reason not only are they just as effective, they kick in much faster https://ronsrants.wordpress.com/2010/07/29/sourcing-nsaids/
This is what I take for COPD https://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ You should, by the sound of it, be taking something along those lines.
Have you had an assessment at your local Pulmonary Function Laboratory? If not, it’s worth trying to get a referral – if nothing else you might get better meds out of it – I did.
There’s a bunch of links to some of my COPD posts here that you might find useful https://ronsrants.wordpress.com/2009/07/31/all-my-copd-and-flu-posts-in-one-place/
Thank you for sharing some of your personal history on your blog. I am a nursing student and we are studying pain in our class right now. Your blog caught my attention because you have COPD and I was interested to know more about the pain you experience and how you manage it. We have a project in class and I am stuck.
I can appreciate if you are apprehensive to share more. If you are willing you can write me privately, I am interested to know more about the quality of the pain you experience and what makes it worse or better and what modalities you use to keep in in control.
I’ve actually covered pain in COPD here https://ronsrants.wordpress.com/2009/09/26/pain-in-copd/ but I’ve just re-read it and noticed that analgesia didn’t get much of a mention, even though I’ve addressed some of the potential problems with analgesia in this post https://ronsrants.wordpress.com/2010/01/09/taking-analgesics-with-copd/ so I need to do something about that.
I don’t have a problem with sharing – it might be of use to others, and I firmly believe that knowledge has little value if it’s not shared. Give me a little while to put something together, and I’ll post it here later today.
OK, then Renne’ – what I’ve done is put my analgesia information in a new blog post https://ronsrants.wordpress.com/2010/11/05/treating-pain-in-copd/
If there’s anything more you need, feel free to post a comment on that post, and I’ll get back to you.
Pingback: Stone diary: Memories of flint… « The Squirrelbasket
Just found your site by accident. It is full of REAL and USEFUL info for a change. Thank you
I have been living with ME for about 25yrs and a few years ago my mobility got a lot worse. Pain in legs got so severe I can now only walk a few steps and that has now been diagnosed as arterial. Then the pain started in my shoulder! For over a year I was off work more than there then finally paid off as “unfit for work”. It took nearly two years of my pestering Dr’s to finally find out it was NOT an ME problem with my shoulder, (come on I know what is ME,) but that it is degeneration to my rotator cuff and now cannot use that arm. After many many trips to various “specialists”, I am now told I have Fybromyalgia and ME, (or CFS depending on which Dr!) Can’t use both crutches because of shoulder and can only use other crutch for short period or my hand gets so sore with the grip that I cannot use it for a few days. I do know that this is affected by ME as all my muscles are very weak. After 3 appeals I did get DLA, Hurray! Until now, I have never been unemployed since I was 15, so now I feel totally worthless. I can go for days without speaking to anyone, it’s very hard. I am not stupid and would love to still be working. So anyone who thinks us “Disabled Lay Abouts” have got it easy, try living as one of us for a week, go I dare you?
Crutches do wreck your shoulders, but if you persevere it goes away (takes a while, mind you – I suppose it depends on how pain-tolerant an individual is whether it’s worth it or not – I found a TENS device helped). Steroid injections might help. Did sod all for me but I know others who have been helped by them.
If crutches are causing hand problems, try wearing cyclists’ track mitts (like padded fingerless gloves, the type they sell to wheelchair users at rip-off prices
http://www.chainreactioncycles.com/Categories.aspx?CategoryID=1877&SortBy=Price I’ve got several pairs, they’re useful for all sorts of things where you need to protect your hands.
If you’re feeling isolated, try Twitter. Yes, I know it gets a bad press at times, and I used to think it was crap, but it’s really not, and there’s a lot of disabled people there too. If you need a starting point once you’ve signed up (if you do!), this is me http://twitter.com/#!/rantsfromron/ And you’re no longer limited to very short messages. It takes a little while to build up contacts, but if you decide to give it a try, I can talk to you about that later.
Or, hey! write a blog. Seriously. It’s a good way to fill the day, plus you get to “meet” people. The downside is that some of them are psychos, but you learn quickly how to deal with them and, mercifully, they’re in the minority. I got one this morning – she didn’t like anything I’ve written but she kept reading, and kept whingeing and moaning, so I blacklisted her and now she’s history. I don’t mind if people don’t agree with me, but to carry on reading something you don’t like, just for the sake of posting obnoxious comments doesn’t strike me as all that sane! If you don’t like one blog, there are plenty more out there.
Oh, and being able – or unable – to work is not an indicator of a person’s worth, No matter what the Daily Mail might think! I’ve not been able to work for 26 years.
Hi Ron – just to let you know – I have been causing havoc with my blog subscriptions. Last night, I unsubscribed and then resubscribed to your blog (and some other favourites) without even realising it – I found out when I received a bunch of emails a short while ago saying I had just newly subscribed to them all (including yours). So apologies if you have been receiving strange emails from WP about this (I’m not sure what info they send out these days). All is now sorted again. Phew.
Well, you’re still shown as having subscribed 6 months ago, so whatever happened at your end seems not to have happened at WP. There are no new subscriptions at all for yesterday.
They haven’t sent out those weird email notifications for quite a while now, as nobody knew what they were babbling about.
Let me know if you start getting two blog post notifications (mind you, I’ve been getting 2 for weeks, and no idea why – I subscribe to my own blog so I can see that the notification system is working OK).
Thanks Ron — that’s good news. Hopefully, then, it just caused email mayhem for me, and not anyone else! Fingers crossed.
hello Ranting Ron,
thank you for such a brilliant website. I have worked since I was 16 and been successful in life until one day last year when something just whacked me out of the blue from nowhere.
Now some 8 months later, and on my 2nd GP, I have finally found someone who will sit and listen to my symptoms and not throw anti-depressants at me. My old GP just kept giving me anti-depressants and then was puzzled at why none of them worked in any way at all !
Anyway, the new GP is brilliant. Had 2 consultations so far and he sat for 20 mins the first time and 30 mins the second time and took a huge amount of information from me and immediately referred me to a CFS/ME specialist and quite happily gave me a doctors certificate for the DWP clearly stating Chronic Fatigue and not the Depression and Anxiety rubbish that I am used to reading.
I have already obtained DLA low mobility and still trying to get DLA Care so, with any luck, this confirmation of a diagnosis and further tests with a specialist will finally confirm what I have thought all along since that dreadful day last year.
Just read your rant on the lightning process and I’m with you 100%, if thats still your view.
Sounds Like an untested money maker to me.
Good work and keep it up.
Seems that Vipassana meditation as taught by S N Goenka and his “Art of Lving” would be a more effective, thorough and longer lasting approach.
You have been nominated for the Versatile Blogger Award. Congratulations! You can check it out here:
hi ron,i passed the esa medical in november 2011,i have since been to the jobcentre for a interview for support,for my c.o.p.d and other things spinal, and depression ,the lady told me i would have to go for another medical in june,i am on work related esa,is it the norm to have another medical every 6months
It’s not entirely unknown, unfortunately. And in my view you should probably be in the Support Group (did you appeal?). However, ESA isn’t my area of expertise and I suggest talking to http://www.facebook.com/SocialWelfareAdvocacy (you’ll need a FB account if you don’t already have one), or http://www.abcofesa.co.uk/board/index.php or both.
I just spotted on Twitter that you are not feeling so good. Hope things improve for you. Keep us posted.
Great blog spolied by profanity. Pity…
Hi Ron,Wow wow and wow,Thank you for the detailing of your problems which in turn have helped so many people on here its amazing.I have just entered the crazy maze of Esa so help me God!! Its enough to boggle a boggled mind and i have no real idea as to where to start. Basic Facts i am a 45 year old female with a 3 year old son.I have been self employed until recently i was unable to keep working due to a host of medical problems firstly osteroarthris of both knees which i have had for 20 years but pain upon bending or even walking is intense now.I have raynards ,ibs, depression, problems with concentration,memory loss sometimes i can’t even say what i am trying to say because ive forgotton the words i need to complete the sent
ence,restless sleep patterns,fatique, severe to profound hearing loss in left ear moderate to severe in right ear even with aids its useless.I had a recent rheumatology appointment who has diagnosed Fibromyalgia which explains some of above so im not mad? its not all in my head when my body aches in most joints which causes inflamation and swelling i also have arthritis in lower back and shoulder.I rang s,c, they sent out a questionaire i answered and returned now i have received another set of forms limited capability for work and i don’t know where to start or how best to describe my problems.I look normal until i walk then i resemble a penguin i dont walk anywhere if i can avoid it i will.Any physical activities can result in weeks of pain so i avoid even going to park with my son which is unfair to him although my 17 year old daughter fills the role for me.I feel most comfortable driving as my left knee is less painful than my right at least i can get from a to b without doing the walk!
My question is how do i describe all this that may make any sense to whoever get the reading of form?Any help or advice will be much appreciated,Thanks jo
Try http://www.benefitsandwork.co.uk/ and http://thefullfacts.com/esa/forum/
“sometimes i can’t even say what i am trying to say because ive forgotton the words i need to complete the sent
That’s called aphasia, by the way, a problem I’ve had for the last 26 years and is part of the ME package. I also have a feeling it might be related to long-term analgesic use, as they can mess with your brain.
And if you haven’t already, it’s worth reading this page – probably worth printing it out.
Thanks so much i will follow that link,hope your well today? and thanks for speedy reply.I think your fantastic with what you have achieved, x
Hi Ron I have just found out I have COPD . I use to smoke but have given it up(with out help of any kind just stoped) I read your blog about DLA . I have the high rate of mobilaty , the low rate of care (my wife get that) .I am just 70yrs old .one question I have to ask as it has not been asked Can people with COPD fly in a plain (I am hoping to go to Bulgria with my daughter) It will take 3 hours to get there. I have 2 inhalyers one is green (2 puffs 4 times a day) 1 brown 2 puffs pder day. I am seeing my doctor befor I go but any info
from your good sxelf would be of grate help.
Best advice I can give you is check with your GP.
I know I can’t fly, haven’t been able to since coming back from Austria in 1985. Passenger aircraft are pressurised to the equivalent of sbout 6,000 feet elevation – about twice the height of Snowdon. While most people are fine at that height, people with respiratory illness might not be.
Based on your meds, your COPD seems to be fairly low-grade (these are mine, for comparison https://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ ), in which case you should be OK. On the other hand, you might be seriously under-medicated, which I’ve seen a lot on here.
So talk to your doc, ask him/her to run a spirometry test. If the numbers are good, you should be OK.
One more thing – don’t put any inhalers in your hold luggage. The hold isn’t pressurised, at least not to the same degree, and they might be damaged.
And if you are cleared to go, and it all goes pear-shaped on the flight, tell the cabin crew – they should have emergency oxygen.
Oh, and one last thought. Don’t drink beer immediately before or during the flight, especially draught lager, or canned/bottled beers – it causes your stomach to expand which, in turn, constricts your lungs, impairing your breathing.
hi ron, is it too risky for someone with COPD to travel abroad? what if travel lasts for 16 hours on plane?
If you look at the comment immediately above yours, you’ll see I’ve already addressed this question.
For a 16-hour flight, just make sure you have ALL your meds with you in the cabin, and keep everything in its original packaging to prove it’s been prescribed.
I need to talk to you about wellsphere as they will not comply with my repeated requests dating back to last December to delete my account. I removed all data and my feed which is set to “summary” yet, they are are still sucking up entire posts from my personal blog and displaying them on their automated site. I’m so enraged at this point that I can barely type this. Please help me.
No ideas off the top of my head, but I’ll see what I can find out. I just have one individual’s email address on this hard drive email@example.com – someone in admin, but I don’t know who they are. If you haven’t already, might be worth having a shout at them.
Just had a look at my account. I can see the public page, but if I log in it all goes to hell – I can’t access anything – whatever I click on takes me back to login, in a closed loop.
Some time back, Wellsphere was taken over by Remedy Health Media – have you tried talking to them? http://www.remedyhealthmedia.com/contact There’s a General option in the menu.
That’s all I’ve got for now. I’ll see what else I can find out tomorrow (getting late here). If I don’t get back to you by midday your time, can you remind me?
My mom ,after a year taking Candesartan, has been suffering from severe dry mouth and other symptoms similar to yours. After stopping the drug, how long does it take until the dry mouth gones?
Thanks for reply
I still have a dry mouth. Many drugs, some conditions, and a tendency to breathe through the mouth (especially when asleep), can all cause dryness – there might be another reason for both of us.
We have pioneered the first Accessible tour of Bulgaria. Nobody’s ever done this before. Can you please let me know what you think about it? Thanks Julien JMB Active
Being housebound, Julien, I’m probably the worst person you could have asked.
WOW!!!!! I just read what ME is and in some ways I could be your twin! Since that 2012 surgery I’ve developed diabetes, rheumatoid, psoriatic and osteo arthritis, along with severe nerve damage and more! I still believe we have RSD!
Actually, what I have is massive and system-wide damage inflicted by a lightning strike in 1983** which might – or might not – also be ME, but that’s the only formal diagnosis I have and it took me 10 years of purgatory to get that.
**Detailed symptomology here https://ronsrants.wordpress.com/2010/08/19/on-being-struck-by-lightning/
I can’t see that RSD – aka CRPS – accounts for the multiplicity of conditions that you have, to be honest, given that each is identified and, I presume, formally diagnosed. The CRPS/RSD tag is usually applied when other forms of diagnosis have failed – i.e., you hurt but they don’t know why – and no disrespect to sufferers is intended; this is a position once occupied by ME and, in the minds of too many doctors, still is. Ditto FMS. They might as well be tagged, in their minds, as IDBYBDHTHTNPGAASBM.
(I don’t believe you, but do have this handy tag now please go away and stop bothering me). 😉
I have been browsing on-line greater than three hours these days, but I by no means discovered any attention-grabbing article like yours. It’s pretty price enough for me. In my opinion, if all site owners and bloggers made just right content material as you probably did, the web might be much more useful than ever before.
Ron, I just wanted to say I read your comment on Time Thief’s One Cool Blog. Just letting you know you are on my mind and heart and prayers. I think people are turning to you since you come across quite knowledgable. But I imagine that can become quite taxing. So, just letting you know I HEARD you. God bless. ( yeah, I said it)