Read before posting questions…

Updated January 14 2012.

Important – what follows does not apply to regular (or infrequent!) correspondents (I’m sure you know who you are), and I am happy to receive comments about my general, or disability and mobility related posts – I just cannot enter into correspondence about disability benefits. At all. Because it’s taking over my life!

I have asked, politely and for months, first in a sticky post and, latterly, on this page,** that people do not drop problems regarding benefits in my lap (sorry, but major health problems are a no-no too – I have my own to deal with – and, as with benefits, everything I know has already been written here), as I am simply too ill to deal with the same questions over and over again.

** In the hope that this will reach the maximum number of people, and that those to whom it applies will pay attention to it, I’m publishing it as a post, as well as a permanent page.

But I am not being heeded. OK, I dare say I am by some people, and for that I’m grateful, yet  the problem persists.

I don’t know whether it’s because people are not reading this message (the previous version), despite its “Read before asking questions” title, or whether they’re reading it and ignoring it – which is just selfish – is a little consideration really too much to expect?

While I have been happy to provide help and advice in the past, especially on the subject of benefits, that phase is over, I’m afraid. And I mean that 100%.

I have stage 4 COPD, heart failure, aortic valve calcification (those last two giving me a life expectancy not un-akin to that of a mayfly), serious ME/CFS, and widespread osteo arthritis (plus long-term physical and neurological damage associated with being struck by lightning 27 years ago). As of this update I might have cancer, too I’m waiting for tests.

I’m losing my sight, as well.

Right now, to screw my life even more, I’m having to contend with the aftermath of a condition that’s destroyed part  of my left lung, so pardon me if I seem a bit shirty!

With the best will in the world, I have more than enough problems of my own to contend with – I really don’t need anybody else’s. Nor – and I’m sorry to be confrontational, but being nice about this hasn’t worked (nor has being nasty!) – will I accept them should you feel minded to ignore all this.

As I’ve said, there is no organisation here, no backup, there’s just me – and I have more problems, of my own, than I can deal with. Most days, simply writing a blog post is as much as I can manage.

I’m dying  deal with it. I have to.

I appreciate that a lot of you have benefits problems, and that this going to get worse, but there  are organisations, local to you, who can help, and who have far more resources than I have. Check the Yellow Pages or ask at your local CAB office. And see the links below.

As for the seemingly eternal “why can’t I get DLA?” sorry, I just don’t know, but it is getting harder, from what I’ve read, to make a successful claim. And, with the coalition in power, it’s likely to get harder still.

There is some useful advice on claiming DLA on this post (there is also a request for people not to drop their problems in my lap, yet they continue to do so), and if you type IB50 into the search box, you’ll turn up advice which, although about filling in the IB50 form, is also applicable to the DLA form (the principles of maximising your application – giving it your best shot – are the same regardless of benefit.

And as I’ve said elsewhere, everything I know on the subject of benefits and COPD, ME/CFS, benefits and much else besides, is already on this blog, either in my posts or in existing comments from me. There is a huge amount of information here. You should be able to find what you need using the search widget (in the side-bar).

I shall, of course, continue to publish posts on health-related subjects, as well as covering a wider range of subjects than, perhaps, I have been, but will not be able to enter into any correspondence on the subjects, though I welcome comments from people who play by the rules…

Also, if there are any new developments, either in benefits or COPD treatment, or if there are any sensible developments in the ME/CFS field, you can be sure I’ll have something to say on the subject!

For all benefits enquiries, I suggest talking to http://www.facebook.com/SocialWelfareAdvocacy (you’ll need a FB account if you don’t already have one), or  http://thefullfacts.com/esa/forum/  or both.

Thank you for your co-operation.

Ron.

Note: Anybody who reads the foregoing and still drops their problems on me will be treated with the contempt they deserve.

69 thoughts on “Read before posting questions…

    • Hi Sandra,

      Everything here relating to disability and benefits is based on personal experience backed up, where necessary, by research – I’ve been on disability benefits since 1986.

      (Update 17.27 Aug 4) I should also add that any useful information gleaned from commenters, like medication now playing a major part in DLA claims – it has to correlate with how ill/disabled you say you are – is passed on. That’s seriously bad news for claimants with cheapskate GPs, and in my view entirely wrong. I’ve encountered quite a few COPD patients who, based on what they tell me about their condition, are substantially under-medicated.

      A lot, too, is common sense – people can be their own worst enemies when it comes to claiming benefits. Were I not too ill to be reliable, I’d have gone into benefits advice as a volunteer.

      Yes, by all means – a link would be very nice. Thank you.

      Ron.

      • Hi Ron,

        I would like to congratulate you on such an informative site. Good on you fella.

        I had an appeal at the tribunal on Monday 02Aug and it was awarded in my favour.

        I was awarded middle rate care for two years and lower rate mobility for two years.

        It was awarded from 02nd Feb 2010.

        Ay idea what will happen now? I spoke to DLA and they said that they have the right to appeal when the recieve the decision notice from the tribunal.

        Do you know how long it will be before I start recieving payment and backdated payment?

        Cheers.

        Phil

        • Thanks, Phil.

          First the easy part – any money will be backdated to the date you asked for the application pack from your local office, or to the date of your application, if you downloaded a form or applied online. Backpay and the first payment are usually close together.

          I’ve never heard of the DWP appealing a DLA tribunal decision (but that could be because no-one’s told me about it – feedback anyone?), but if they really can overturn the tribunal’s decision, it makes a mockery of the whole process. They might just a well pull names out of a hat.

          I always advise people not to contact the DWP by phone (or anyone, where benefits are concerned), but to get everything in writing (ask them for their fax number – they’ll have one – if you want a quick response; well, quicker than you posting a letter anyway). If you phone, you have no way of knowing if you’ve got the EO, or a clerical assistant who hasn’t got a clue. Plus it won’t endear you to them, as they really are very busy.

          It can take a long time to get the money. It took me 6 months, and that was without hitches, and I have heard – there’s a comment on here somewhere – of a 12-month or more wait. Six months seems about average, though, so any time now. Maybe.

          A friend of mine has to go through the whole refusal – appeal – tribunal nonsense at every review – and always gets it, so what’s the point of dragging it out? It just wastes money.

          Ron.

          • Hi Ron,

            Just to keep you updated and thankyou for your response.

            I emailed DLA today along with the decision notice from th tribunal. I had a call back and the lady said that I will have all backdated money in my account by wednesday next week. I did put that I had spoken to MP but it seemed to have worked. Quite a quick result really as I only had my tribunal on Monday.

            Cheers

    • Yep, sometimes I amaze myself! Right now I’m making a batch of rye sourdough bread and doing my laundry! Well, OK, the machine’s doing it, but I’ll take the credit for pushing the button.

      Ron.

  1. HI,

    i just want to take a moment and thank you for your blog. i was diaginosed in Nov 2009 with COPD Emphzemia and Asthma. I am on 2 inhalors….Symbicort 160/4.5 twice a day & Spiriva. I also take singulair. I take an over the counter mucus med. The doctor told me I was moderate. ( mild – moderate – severe – extreme) I live in Northeast OHIO and today it is very humid and HOT. I was outside for about 30 minutes and had to get back in my air conditioning. Somedays I find myslef very scared and others I am living my life to the fullest. Because I lost my job through a layoff in 08 I have recently ran out of medical benifits so I have to go to a county hospital/clinic and have concerns about changing doctors.

    Thank you for caring and taking you precious time to post and keep the rest of us aware. i have signed up for you blog notices.

    Again thank you very very much.

    • Thanks Ricki – always good to be appreciated.

      I was going to say you’re undermedicated but, being in the US, that would be no help. Aside from the ER TV series, I have no idea how county hospitals operate, or how easy it is to get meds out of them, but you’d really benefit from a long-acting oral bronchodilator – Phyllocontin Continus is about the best there is (aka Aminophylline SR).

      This is what I take http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ which you might have already seen. OK, I’m at Stage 4, but treated as a pick n mix, anything on there would be useful if you can talk them into it. The better COPD is medicated the slower it deteriorates. Fitness matters, too. I’m only doing as well as I am now (i.e., still alive and functioning), because I was exceptionally fit before I became too ill to exercise.

      I understand the fear – it affects us all at times – it helps if you can develop a distraction mechanism (I read, or write my blog) – anything to stop you fixating on the fear.

      You’d feel better if you found a way to put your COPD out of your mind as much as possible, too. I rarely think about mine unless I’m writing about it – I even take my meds on auto-pilot. I’d like to be able to tell you how I do it, but I don’t know – it just crept up on me. I think, really, worrying eventually becomes too much effort, and you just switch off. As good a theory as any, I suppose.

      Good luck with the hospital.

      Ron.

  2. oh wow such a quick response..i didn’t expect it…i was venting today was one of those days when I had some fear roaming around inside.

    If I understand you correctly then I should be consistantly use the inhalers and singular anyway. For instance i was in TX with family for a coule weeks and my breathing was fine…no coughing and my breathing was not labored at all. I have stocked up on my meds so i have a couple months left so I decided to stretch them out. So today I was in search to see if the medicines really extended quanlity/quality of life. On most days i feel ok… my best firend has always said that she thought i was a little asthmatic but nothing was ever said to me. Even a coule years ago when I went to the doctor and told them i was having a hard time taking a deep breathe.

    anyway I have been in the house all day today. I am very active in my life. thi ssummer has been tons of fun and some travel. I don’t work out like I use to and i know I should. Do you think i could order a long-acting oral bronchodilator – Phyllocontin Continus is about the best there is (aka Aminophylline SR) on line?

    have a great day…

    • OK – last first – I’ve never seen Phyllocontin offered online – certainly none of the online pharmacies I deal with stock it. I’d be wary of hunting for it online – there’s a lot of fakes out there. Only buy online if you get a personal recommendation from someone you trust.

      Ideally, you should have a timetable for your meds, the same times day after day. That way you’ll stabilise better. Once you’re stable you can think about reducing your meds, but you really don’t have a lot of scope for that, so take care. The steroid inhaler, in particular, you shouldn’t take liberties with. I know I do, but I have a lot more scope than you do.

      A lot of people think, OK, I feel fine today, so I’ll cut back, but unless you’re very stable, that might be a bad idea. You’re on a relatively low level of medication anyway, so cutting back may not be wise. You’ve seen what I take – if I skip a couple of inhalers, I’m only missing a small part of my meds. If you do that, you’re missing most of your meds. Then you may well wind up taking more the next day to compensate.

      I understand that money is a factor, but you’ll feel the benefit long-term if you can keep up with your meds.

      One last thought – if you do track down Phyllocontin, take one religiously every 12 hours. At your stage that should be fine. I take mine a couple of hours before I get up in the mornings, so it’s already in my system when I finally do get up.

      And that’s me done for today (time difference). Let me know how you get on at the hospital – it might be helpful to others.

      Ron.

  3. Hi Ron,
    I have been reading your blog and am really interested in talking to you further about ESA….I myself am battling with what to do concerning my health and work. I would like to talk to you about the issues we both have if at all possible. Is there a way we can chtat through email or something as i am not overly comfortable discussing things on here. I would be very gratefull if you could get back to me,.
    kind regards,
    Tina.

    • Hi Tina,

      Unfortunately, what I know specifically about ESA is effectively nothing, other than what I’ve said elsewhere here. This post http://ronsrants.wordpress.com/2009/07/07/claiming-dla-and-esa-some-tips/ contains information for claiming DLA and ESA. I have appealed on 2 occasions for ESA feedback – good or bad – and got absolutely nothing.

      Most of what I know about DLA and IB is based on experience, supplemented with the experiences of others. With ESA I have no experience at all and, as I said, zero feedback.

      If you need ESA-specific info you’re best talking to a benefits advice group – your local CAB office will be able to point you at those in your area.

      I do prefer to offer advice – if I can – via comments, as it also benefits other people (and only then if it doesn’t involve me in much work, as per this post). If you’re concerned about confidentiality then it’s easy enough to remove anything that might identify you as, indeed, I have. If you’re happy with that, can you get back to me by any of the condition-specific posts? Thanks.

      Ron.

  4. Hi Ron
    I have just got a letter from Atos asking me to attend another medical this will be my third in just over six months is this the normal thing for them to do.
    Thanks and regards
    Tom

    • Nope, nothing like normal. Most people seem to be reviewed every couple of years, if we’re talking about DLA (ESA, no idea). If you’re not having your claim reviewed at the moment, I think you should ask what the hell they’re playing at.

      • Hello, ive searched the web for positive feedback on ESA, atos Medicals and found none. I have a medical on Wednesday the 13th and quite franckly i and frightened and scared.
        I have a very rare, life threatening, progressive disease called Fabry’s disease and most of the symptoms of it, chronic neuropathic pain, IBS, inability to sweat, fevers, stage 1 /2 kidney disease,high blood pressure chronic fatigue, the list is endless. I have an infusion of the enzyme my body does not produce every 14 days and this is done at home by a oncology nurse from homecare team.I also have 3 monthly appointments with my renal consultant, 3+ appointments a year with my Fabry’s consultants, yearly mri brain and heart scan.
        Is there any advice you could give me please, from reading the posts i feel very negative
        susan

        • Hi Susan,

          Given that Atos doctors appear to be no-hopers with minimal medical knowledge (if they do have any, they don’t get to use it), the possibility of them having heard of Fabry’s disease is remote. The prospect of them being able to assess you competently is unlikely, in my view.

          If I were you I’d go armed with as much documentation – copies, not originals – and ask, as soon as you see the doctor, what he knows about Fabry’s. Odds are you’ll get a blank look, so present him with the information.

          The bottom line, though, is that they don’t care what’s wrong with you. All they are interested in is slotting you somewhere into the all-work assessment. If you had no hands, for example, you’d be expected to lift boxes with your stumps – that change was introduced a few months ago. It hurts? No-one cares.. Every negative thing you’ve read is probably true, unfortunately.

          I have some suggestions, but I’d prefer to email you, rather than post them here. I’m always wary of posting too much detail here as it might also aid people fiddling the system – though that’s nowhere near as prevalent as the lying scum in the coalition would like people to believe – so let me know if you’re OK with that.

          One last thought for now – don’t use the words “chronic fatigue”. The DWP believes . . . No, believe is the wrong word, they claim that CFS is a psycho-social condition, and that’s a pigeon-hole you don’t want to wind up in. Go with unremitting tiredness, or constant exhaustion, or something along those lines. Chronic fatigue is a form of words best avoided, no matter how apposite it might be.

          Ron.

  5. I fully sympathise with you about this Ron. I ran a blog for over two years offering advice about a completely different topic – people didn’t read things, just kept screaming “help me” – in the end I got sick of it and stopped wasting my time on these idiots.

    I’d already told them all they needed to know – they just needed to read the darned blog to know everything I could tell them about dealing with their situation.

    I abandoned that blog in favour of something completely different and much more fun. Maybe you should just dis- allow comments altogether on posts where you get too much of this annoying crap – then you don’t even have to bother deleting them!

    All the best Ron – life under the coalition is going to get a lot tougher for all of us. Certainly is for me.

    Helen
    P.S:
    Your advice to Susan is spot-on by the way – it is not only the DWP that treats chronic fatigue syndrome in that way… far better to steer clear of the term!

    • Hi Helen,

      I’ve taken to just ignoring comments from older posts. OK, I’ll miss a few that tell me how wonderful I am(!), but I’ll miss an awful lot more that I just don’t want to get involved with. Especially now I’ve been diagnosed with heart failure (Class 4) – whatever time I have left I want for me. Selfish? Don’t care. Much rather be down the pub.

      You know, I just can’t recall whether I emailed Susan. I’ve got a vague memory of doing so – I just can’t be sure. Ah well…

      I have thought of just leaving this alone, and going off in a different direction, but I have a huge amount of time and effort invested in this and I suppose the bottom line is that I like what I’m doing here. And I’ve built up quite a decent following too – I don’t think it’d be fair just to walk away, any more than I’d be thrilled if my readers just vanished.

      And I don’t actually know, if I shut down comments on the older posts, whether all the old comments, and my replies would be lost – there’s a lot of work there. The question has been asked several times in the forums, and the only answer is that themes behave differently, and they only way to find out is suck it and see. Not wildly helpful.

      It does get annoying when people read this page and still ask for help anyway – there’s an unpublished comment here asking for help about (verbatim) “disc bulging, depression,social phioba,social axiety disorder,fibromyalgia, hemangioma on the spine & disc degeneration”. I know bugger all about any of that, even if this wasn’t an entirely inappropriate place to ask! I have two areas of expertise, COPD primarily, and ME. That’s it. Look kiddies, anything else, and and you might just as well Google it – I CANNOT HELP!

      I did, as you might have spotted, start a breadmaking blog, but I ended up publishing the posts here as this is where my readers are. The posts get read here, they don’t get read there – the vagaries of life online. Oddly enough, my old website, that pre-dates this blog, is still chugging along quite nicely without me. Go figure.

      I think the attrition rate for IB claimants being assessed for ESA is going to be huge. ESA never was intended to do anything but shove people onto JSA whenever possible, and now it’s a bloody sight worse. I never thought there’d be an upside to becoming a pensioner but, hey! there is. Though I’m sure they’ll find a way to screw with that before long.

      Nobody will be more surprised than me if, during the next 4 and a bit years, this country doesn’t sink into civil war, because an insanely high number of people agree with what this poxy government is doing to the disabled and the jobless. I think conflict is inevitable.

      And, in the final analysis, I won’t be taking bets on the question of Cameron’s sanity – nobody so detached from reality can have both oars in the water (he didn’t know what Lansley was doing to the NHS – hell, we did!).

      Take it easy and, when it comes to ESA, everyone must appeal if they’re turned down. The rejection reversal rate is around 40% and, with the lunatic changes in the rules, I can’t see that figure going anywhere but up.

      Ron.

      Ron.

  6. “Especially now I’ve been diagnosed with heart failure (Class 4) – whatever time I have left I want for me. ”

    Wish I could say something relevant, something helpful, something nice.

    Thinking of you.

    • Appreciate the thought. (Thought you knew – aren’t you subscribed?)

      I’m pretty much past the “Oh shit, I’m gonna die!” phase – I’ll just play it as it comes. I’ve made some changes, reduced my salt and fat intake for what it’s worth (probably not a lot, to be honest, given what else is wrong). Can’t reduce food – I’ve been on one meal a day for 7 years. Still waiting to lose weight!

      I go to the pub once a week – that’s my social life! – and I thought maybe I should drink wine, and cut down on beer (all that fluid isn’t good). Then I thought, sod it, everyone’s entitled to one vice, and I’m having mine! And as far as I can tell, it doesn’t seem to be harming me. And so what if it does – it’s not going to change much.

      It’s still a mystery, though, how I could go into hospital with heart failure that was little more than a minor nuisance, and have it ramp up to life-threatening in a matter of hours. I have a feeling there’s something I’m not being told, especially as my GP won’t talk to me.

      Mostly, though, it’s out of my control, especially if it takes me off suddenly. If it doesn’t, and it’s going to be a slow deterioration, well, I’ve got my exit strategy organised.

      All I can do is wait and see. I won’t pretend it’s not still scary, but it’s under control – mostly.

      Ron.

  7. Hi Ron,

    Hope ya doing as well as ya can!!

    Now I have stopped laughing at some of your comments & can breathe again, I thought I would put pen to paper!!!

    Wanted to say thank you, some of this info is going to be a God send to me in the next few months!
    I was on an open ended award of DLA due to chronic bronchial asthma until coming to Cyprus in 2006, where I thought my health would improve, unfortunately trying to survive here in 100% humidity has been a nightmare of deteriorating health, copd, fibromyalgia, possible Lupus… blah blah blah & unable to work for 2 years I give up, we are coming home, broke, and homeless.

    Once I have proved that this born & bred yorkshire gal has a “Right to Reside” and am an “Habitual Resident” am sure the fun will begin…. Apply for JBA, as this will exercise my EU Treaty Rights….. No doubt you can tell I have being Googling with a vengeance!!!

    Anyways, no doubt I am not the only one in this situation & health problems, would an update on how we get on be of interest to your bloggers?? If anyone has any useful info for me would be much appreciated.

    Thanks again & take care

    Julie…… P.S ARE you SURE I cannot join the army??? x Lol

    • Hi Julie,

      Why is it women find what I write so funny? An awful lot do, but guys don’t. Maybe I’m missing out on a niche market? I try to keep the tone light – maybe it’s lighter than I thought. Still, the main this is people keep reading.

      The best places for me, health-wise, have been Paris, and Germany (along the Rhein, specifically), and Austria – all stable, mid-continental climates and no extremes of humidity. Here, on the other hand, on the Cleveland Way in 1980, I got hot, early-summer sun, fog, and a blizzard – all in one day. I do pretty well in the Peak District, too, for some reason.

      I can’t honestly see that coming back here, broke and homeless, is going to improve things for you, though – it’s possibly the worst time you could have chosen. The benefits system is going to hell, and Housing Benefit is currently being revised – downwards, making it pretty much impossible to rent in the private sector, and unemployment is around 2.5 million (depending on who you believe), and rising every day.

      Good luck.

      Ron.

      • Hi Ron,

        Hope you doodling along ok & still getting some beer down ya neck!! Finally got back to uk in may, housed in Aug, Thanks to the Re-ciprocal agreement between EU country & knowing the law, housing were brilliant… & after having to reapply, got my full D>L>A 7th Nov.. had to be back 6 months..This is one happy puppy!!
        Don’t know if it will help any of your readers, I found a site called benefit & works, they take you through both DLA & ESA forms box at a time…. At £20 for the year & my memory being so hazy, thru illness & drugs, it really helped….. Must admit I found the forms very stressful, they took weeks rather than days.. I actually had a knack for them & have helped many people, unfortunately the effect of my illnesses has really showed… Found them so bloody depressing.. cannot do this or that!!!
        Anyway, onwards & upwards, life is plodding along, & at least I can get the help I need..
        Wishing you all the best for Christmas & the New Year Ron.. TaKe care Julie x

  8. just wanted to say hi. ive read alot on here . im 44 and have copd. it is a scarey thing not knowing the future, my kids all of it. but i want to thank you for you advice and thoughts on it. brought a smile to my face. i hope your doing the best you can . i hope to learn to look at life as you do. thanks god bless

  9. im sorry ron ive just dropped my complaints on your lap and asked for advice i read ur front page after i posted my comment sorry ron just ignore that comment of mine i understand what yor saying good luck ron get well soon

    • Hi Martin,

      I’ve replied to your question – it was simple, because I don’t know the answer! However, I’ve posted a link to people who might be able to help.

      Ron.

  10. Ron

    Just an update for you.

    You advised me over a year ago just how difficult, time consuming this process was and also how obstructive some personnel could be.

    I plodded on and on, got rejected for motability straight away, got my 1st appeal rejected before I had even got extra evidence to them.

    All that was left was the Appeal Tribunal and to be honest I was giving some thought to not even turning up because I had no new evidence and it was a forlorn hope to get a decision in my favour

    My problems was basically the two hospital doctors I have been seeing for years had written to the DWP saying that I only had moderate COPD and that I could walk half a mile without any discomfort at all.

    I argued at length for months that this was not so, to no avail. Yesterday, at my insistence, I finally got seen by the Consultant Head of Respiratory Medicines at the hospital.

    She was very apologetic, said she was dismayed at how “My staff” had diagnosed my particular case and will “in the next few” days write to me saying that I had “very severe”, not severe, COPD and that I could barely walk 30 steps.

    The letter will state that I meet all the medical criteria for Higher Rate Motability and said I should take this letter to my Tribunal.

    Game, set and match to me it seems …………. I hope.

    You know what Ron, I feel vindicated. For over a year doctors it seems have looked upon me as a charlatan, a benefit scrounger and now at long last I have my pride and dignity back.

    Its fair to say that in my darker days, coming here and reading your “rants” spurred me on……….. so thank you very much.

    And to others like me, when all seems unjustifiably lost ……..just keep on fighting for your rights.

    John

  11. Hi Ron hope you are feeling well I have had the day from hell was at tribunal this morning and was told in not so many words there is nothing wrong with me I have copd and nerve damage to my spine and mental health problems and was blackmail into dropping the case as they where going to stop my middle rate care low rate mobiltly which I get for my mental health I put onto get high rate care and mobility for my nerve damage and copd I am writing a letter of complaint to the tribunal services as feel I was treated like piece of dirt has any one else had this problem and how did they deal and cope with it many thanks mary

  12. Hi Ron

    I have suffered with CFS for almost 8 years and have undergone PACE trials and a pain management scheme with local hospital.
    I tried to apply for blue badge many years ago but was denied.

    Is it worth re applying?

    • Hi Rachel,

      Always worth reapplying. If you get DLA, especially higher mobility, it’s an automatic badge. If no DLA you’ll need the support of your GP, and it’s then a bit of a lottery.

      Ron.

  13. I’m astonished that you wrote this page and yet people are still asking you for advice in the comments beneath it! And – wow! – you’re graciously giving them advice where you can. Brill human being, you are, I think.

    As for putting up sticky posts and trying to point things out to people, I’ve a comment policy page people rarely read, even though it’s standing there at the top of the page bold as brass. And I linked to the page that it’s on via my ‘about me’ page in my main blog – which seems to the most-read part of my blog – and they just merrily (or otherwise) scroll straight past the link! I dunno what it is… are people in such a hurry these days or just don’t want to read stuff we want them to read?

    • Hi Val,

      Well, I only answer the easy ones – anyone sending me their life story and asking how to fix it – and they do! – gets binned unread, I’m afraid. They also continued to post questions on a load of older posts too (having ignored the page at the top that says please don’t!), so I eventually got fed up and closed comments on posts older than 3 months which solved the problem. Unfortunately, as every post gets to three months comments close on them, too, which is a problem for new readers, but I can’t see a way round that other than closing comments manually on each post according to subject (it’s the disability and benefits posts which became a full-time job), which, with almost 1,400 posts, is just way too much work.

      Still, the information is still there – everything I know about disability, COPD, ME and, subsequently, my heart problems, is in my blog, if people are prepared to look for it. A Google subject search will take them to the right page as often as not, and they can search within the blog, too – the information is accessible, even if it’s not as easy as asking me!

      There are problems with sticky posts, not least that most people don’t get to see them. If people arrive via a Google subject search, they go straight to the relevant page. Only if they arrive on the Home page will they see a sticky post, and whether it will be read is debatable. The bigger problem is with Google, which is obsessed with fresh content, and with a sticky post that’s all it will see, assume there’s nothing fresh and downgrade your ranking. Best to put stuff on pages – the chances of it being read or ignored are about the same. Plus Google will be able to see your new posts.

      And yes, people just read what they want to read – not what we want them to. A fact of life unfortunately.

      Ron.

  14. Look, people, I have explained, at considerable length, the reasons why I cannot get involved in other peoples’ problems any longer, but some of you just aren’t paying attention, or simply don’t care about what I need.

    So, let me put this as bluntly as I possibly can – while I welcome comments on any subject on this blog (except where inconsiderate people have forced me to close comments), the fact is that I am dying.

    I don’t know how much time I have left, life isn’t that simple, but I do know that there are still things I want, and need, to do with my life that don’t involve sitting in front of a computer all day. And, really, I no longer have the emotional or physical resources to get personally involved with the problems of others.

    Put another way, possibly easier to comprehend, I have enough problems of my own – I don’t need anyone else’s.

    You might feel that’s selfish but, if so, it simply demonstrates that you haven’t been paying attention to anything I’ve said here, or anything on this blog I’ve written over the past few years.

    I have had to close comments on my older, health and benefits-related posts, because people were choosing either not to read this page, or to ignore it. Please, don’t force me to close comments here, too.

  15. Could you mention in a prominent place on your blog perhaps near the top that people with questions should use the search facility on your site. I myself have used it many times to good effect. It must get really frustrating for you to have to answer the same questions over and over again.

    • It must get really frustrating for you to have to answer the same questions over and over again.

      Yep – just one reason I got so fed up with it all. And really, the Search box couldn’t be more conspicuous, but it’s a fact of life that many people would rather get someone else to do the work than do it themselves. God knows how they cope with Google.

      However, the only way to do what you suggest – blogs are less flexible than websites in this respect – would be to publish a sticky post saying Use the Damn Search function!** Or words to that effect, but sticky posts cause all sorts of problems with Google, not least damaging my page ranking (which I’ve worked hard for), as Google looks, always, for fresh content. Seeing the same post stuck at the top of the page will – and bear in mind computers aren’t very bright – convince Google that I haven’t written anything new.

      Or pay a premium for the CSS editing function, which I won’t do. not least because I have no skill with editing CSS.

      So, folks, if you’re reading this, the search box is at the top of the sidebar – please feel free to use it. Like Google, it will throw up stuff you don’t want, as well as stuff you do – it’s just a matter of coming up with the most accurate search term and sorting through the results, exactly as you’d do in Google. In fact, if you’re looking for a health, mobility, or benefits related item, Google is very likely to offer my post on the subject anyway.

      Ron.

  16. Ron, My thoughts are with you, My problems pale into insignificance..Good Luck, Do what you can, while you can.

    Richard

  17. Hello Ron,

    I just wanted to say i am really sorry to read about how ill you are. As the carer of someone who suffers from COPD but who has been given no treatment, I know how hard your day to day must be.

    I hope you are feeling well today x

    From Gemma xxx

    • Hi Gemma,

      How come no meds? Anyone with even mild COPD needs to be medicated. I’ve had the precursors of COPD – asthma and bronchiectasis – since age 2, and emphysema set in 16 years ago. Even so, I would still be reasonably functional with COPD – it’s my heart that’s killing me, not helped by the fact that my left lung was trashed by pneumonia and empyema back in January. With COPD, and properly medicated, I’d possibly have another 10 – 15 years or so, barring accidents, though it’s fair to say I might not want to!

      The person you’re caring for really must have appropriate medication – these are mine http://ronsrants.wordpress.com/2008/06/06/drugs-for-copd/ Anyone with COPD should have something along these lines.

      Ron.

  18. Hi there Ron , i have been reading ur blog now for some time i to have applied for dla and got refused time after time i have cronich astmah and mild copd i was awarded dla for 2 yrs in 2006 but they took it of me after sayin my care and mobility was not an issue well it seems that im a robot i have been very poorly for the last yr and gettin worse as my days go on im on 4 inhalers and nebulisers and steroids everyday i went on holiday with my family to the IOW England and they had to rush me to hoapital as i was really poorly i have been told after appealing that im going to a tribunal AGAIN this is the second one im going to man it frustrates me i have had to give up work as i was a carer for dementia and nursing and now im waiting for that ems or what ever its called i dont know if i can win it again im gettin so fed up with system but there is one thing i would like to say to u is well done to u mate u are what the people of this world need and to put to shame that those lie to get extra help x

    • Unfortunately, turning people down on initial application (or reapplication), is rapidly becoming the default response. I just don’t see the point with DLA – it actually costs money rather than saves it. It makes no sense, except that they probably hope people will give up and go away – which no-one should ever do.

  19. Hi Ron,
    Sorry to hear you are so ill, your blog has been very interesting.
    I am not after dropping anything on you as I appreciate you are too ill, I too suffer with CFS/ME, only just diagnosed in November yet had the symptoms for 8 years, and was told my a specialist 6 years ago that I am “just more tired than normal people” very frustrating!
    Anyway, all the best to you.

    • Hi Lisa,

      Yep – way too many doctors simply have no clue what ME’s about. Took me 10 years to get a diagnosis, and my GP said, oh, it’s just a name!

      Ron.

  20. Hi Ron
    Sorry to hear how ill you are.

    Just to say it may help people wanting advice on applying for DLA, ESA to check http://www.benefitsandwork.co.uk/ . For a small fee you can access very thorough step by step info on filling out forms, appeals etc. A friend recommended it at the time and I’m very glad. It was the best money I spent, and much better (ie thorough) advice than many other ‘disability organisations’ are able to provide.

    Many warm thoughts to you. Take care.

  21. I’m still baffled that after reading the above, people are still asking me for help.

    So let me ask a question – just exactly what part of “I’m terminally ill and too sick to get involved with anyone else’s problems” are you having trouble with? It’s not fucking rocket science, is it?

    So this is how it’s going to go – all future requests for help will be binned unread.

    Is THAT clear enough?

  22. Hi Ron..

    Glad to hear your still plodding along, although by the sounds of it still being hounded to give answers to people who with a little research could find the answers for themselves….

    As I have previously stated, since arriving back from Cyprus last May, I regard myself as one of the lucky ones.. We are housed, & I got my DLA back, since then the wet room has just been completed….. yippee!!!! At least I can be clean now without breaking myself…..

    I don’t leave the flat very much, due to continuous fatigue, pain & Copd, however due to the Reciprocal Agreement within the EU, were doing ok…

    The pain is not under control, however, am due to see the Rheumatologist early May, so fingers crossed…..

    Thought you might like to hear a positive story, with no whinging or griping..
    Are we getting all which we should??? NO…. But were doing ok for now & for that I am eternally grateful!!!!!

    Keep ya chin up darling

    All the best

    Jules Havler

    • Hi Jules,

      Glad its worked out reasonably well. I could do with a wet room – can’t even get a sodding shower installed! The excuse is that there’s a communal shower on the next floor – and so there is, but it might as well be on the moon! Anyway, I’ve never used a communal shower in my life, and I’m not starting now. Ick!

      Thing is, though, from what I’ve seen personally, when it comes to benefits, many people are their own worst enemies – a point of view that’s not wildly popular, but I saw someone a while ago saying they didn’t put much information on their ESA form as they didn’t think it would be used to assess them. So just what did they think all those questions were for?

      Best of luck with the Rheumie . . .

      And if you’re stuck at home, check out Twitter (don’t believe the Luddites – it’s actually pretty good). You can find me on @rantsfromron (@ronsrants was taken), and there’s a lot of disabled people on my timeline, many with ME and COPD naturally enough, I suppose – and a lot who’re not, of course.

      Ron.

  23. Hello Lovely soul. Ron, I just came across your blog. I have COPD also although my Dr. has not bothered to test me to tell me what stage but I nearly died twice this year. I am alone as my spouse is divorcing me and I am glad about that. I now have time to discover people like you. I read your poetry that dug into my heart and made a place for itself and you forever. I wish you the best and I plan to read every word you have written to help me through this process. I have other ailments along with not being able to breathe and it really doesn’t matter right now. What matters is that I have come across a blogger that is dynomite and full of life even at the end of his life…but, only on this plain. You know I am going to say a prayer that you and I get to meet someday…some time. Here or somewhere else beyond when we can breathe deep, hug, laugh without a cough and run together where ever our legs and lungs take us! Great to meet you here. I am going to include you in my prayers.
    Thank you for your writings. Each and every one of them is a part of you and you are giving so much to all of us. I plan to spend a great deal of time here with you. Thank you so much for your openness, honesty and faith.
    Nice to meet you,
    Alayne “deb” Brooks

  24. Not sure where to put this. was wondering if you had heard the following as it will/may affect anyone on certain painkillers, and possibly all. Ive not seen anything myself but was in a new post today on the fibromyalgia site……..

    QUOTE:
    from next year the government has sent directive that patients are to enter into a contract with GP to get off any drugs that are classed as addictive, two of the drugs she mentioned were Tramadol and Dehydra codine but there are many other drugs.
    So not only does the government of the day think that we are fit for work they now want us off the meds that lessen the pain. UNQUOTE:

    this is where it came from….http://fibroaction.healthunlocked.com/blogs/653921/new-government-directive-next-year-regarding-pain-relieving-drugs?ref=email_daily

    • The best place, Dee, is the About page. As this page is mainly saying go away, don’t bother me, I generally just bin comments that emanate from it.

      I’ve certainly not seen this reported anywhere, and given all the people I know online, on analgesics, quite a few on morphine, which is the most highly addictive, if it were true, there’s be uproar. And there isn’t.

      I’ve not seen it reported in Pulse magazine, either, and I get a summary of that daily. They used to think I was a GP, and a couple of years ago said the editor wanted to publish some of my comments in the print version, so could he have my practice details? I pointed out that I wasn’t a doctor (though, frankly, I’m better informed than many of the GPs that post comments, which is worrying!), and did that mean he was going to throw me out. He said no, as long as I maintained my standards, it was fine by him. So I still get the magazine every day.

      Right now, in the absence of any supporting evidence, I don’t believe it, not least because as every doctor knows, and as every patient should know, the only effective analgesics are either dangerous, addictive, or both. There are simply no alternatives.

      I’ll keep an eye on the situation but, as things stand, one person’s report, totally unsubstantiated, means little or nothing.

  25. ok. ill keep my ears open and eyes too.i try not to visit my doc more than i have to, which lately has been hardly at all. (touch wood) ..though its usually been the acute illnesses nurse i have been designated to see.but should i see a doc or speak with one i will ask if they have heard of it too..
    mind you the way cameron is behaving,…(I refuse to put a capital C in front of his name)… i wouldn’t put anything past him.and if theres a next time,ill try and remember to put it in the about section.

  26. hi i also have asthma im 53 iv had it for 45 years i dont claim anything. but i was thing of going for DLA i work in a very dusty shop which makes it worse ..i cant even go up my stair lately with out using my inhaler .but i dont think i will have any luck with it ..and if im ask to go for medical ill mess it up as im not good with things like it …so do you think its worth me going for pls

  27. Ron, I just came across your page when I was looking for COPD information. I’ve had COPD since I was 32, It was diagnosed secondary to Asthma, I am 59 now and I have been on Oxygen for 7 years… I read about all the drugs you take, but didn’t read anything about supplemental oxygen therapy……are you on oxygen too?

    • O2 is a contentious subject. I was recently in hospital for 6 weeks, on O2 24/7. Didn’t do much during the day, but was clearly beneficial at night, a fact noted by the nursing staff.

      However, when I was getting close to discharge, one of the medical team, when asked what was going to happen with O2 at home, insisted that I hadn’t benefited from it, and the effects were imaginary. The BP and O2 monitor doesn’t have much of an imagination!

      Another problem, despite having asthma and bronchiectasis since age 2, and COPD since the mid 90s, is that my O2 sats refuse to drop below 95%. Why it’s that high, no-one can explain – I sure as hell can’t. It does occasionally drop into the range at which I need O2 – 91%-90%, but rarely stays there long. It’s a genuine, and so far insoluble, mystery.

  28. That’s interesting, My oxygen level stays at 85-88 when I do anything other than sit. When I sit its stays around 93-95%. I also use oxygen at night when I sleep. Well for you sake its good that your levels stay high, I can tell you toting a portable oxygen concentrator every where you go is a real bummer ( better than tanks) of course better than the alternative …..I’ve had the asthma since I was a child, and like you I never smoked……..

    • And there you’ve hit the nail on the head – my O2 95% level is sitting, because sitting is what I do. What it might be were I active I have no idea, as I no longer am – I use a powerchair.

      My cardiologist wanted to arrange for a 24-hour O2 monitor, which necessitated my being at the hospital on two successive days at 09.30 – which simply isn’t possible. I have a relatively narrow window of activity late morning/early afternoon. When I pointed this out and asked – nicely – for an appointment I could actually have a chance of keeping, he went off in a massive sulk! He was already peeved because I’d declined a test which had a 24% risk of stroke – way too high for a diagnostic procedure, especially when the same data could be obtained by much safer means.

      As for not smoking, I suspect that was largely negated by the fact that, until the smoking ban, everybody around me smoked pretty much incessantly. Including my doctor!

  29. Ron – no talk about disablity but just to let you know that I apprciated the probably long-go written rant about Radio Caroline North and mentioning ‘Murph the Surf’ and how you enjoyed the programmes. I was married to him for many years and after all this time I am sure he would have liked to know that people still remmbered him.

    • I’m sure that if there were a Caroline North website you’d find that a lot of people still remember him fondly – and why there isn’t one still mystifies me.

      These days though, at Radio Caroline, it’s as if Caroline North never existed.

  30. … truly find you remarkable Ron and very to the point – with humor galore. My sister died 24 months ago, she was tired of being in pain, on oxgen, every one thinking she was crazy – making this stuff up. I loved her and tried to help, and would have changed places with her, just so I could give her the gift of a healthy body. People don’t know pain and death, until it hits them – it’s ignorance I suppose. Sue wrote me a letter, saying she was choosing to die, not go on in pain and all the hurt from problems by being house bound… all of it still too painful, but Ron, I truly hope you’re finding comfort in your day to day and know or believe that there is goodness ahead for each of us. thank you for your content and responses.

    • Hi Anita,

      You had a lucky escape there – I don’t usually read comments for this thread as, despite telling people I can’t deal with their problems any longer – too many of my own – they still send them. It’s best to post comments on the appropriate page, then they won’t be overlooked

      Sorry to hear about your sister, but I know exactly how she felt – I feel the same way much of the time.

      Being housebound is bad enough, but people and their lack of understanding can be a curse. I have a friend – soon to be an ex friend the way things are going – who simply cannot understand illness. I’ve tried to explain to her how it is but there is just no common ground. Right now I feel she doesn’t even want to understand.

      Right now I’m trying to get my GP to treat me for Addison’s Disease. It was diagnosed this time last year – it was, in fact, what put me in hospital – but no-one bothered to tell me and, because I was only minimally medicated, I could have died at any point since then. I only figured it out in the last couple of weeks and, so far, my GP is ignoring me. He would either be happy if I did die, or he hopes I’ll just give up and go away.

      If he does think that, he really doesn’t know me.

      Did you know, by the way, that it’s only women that find me funny? Even I don’t much of the time ;-)

  31. Ron- you are brilliantly funny, and I could tell from your writing that you have a natural humor about you, you have the stuff that makes tv personalities a lot of money. Not sure why men don’t find you funny, but I can’t figure men out anyway.
    Addison’s disease is serious as you know. So have they started you on steroid treatment – synthetic hormones, if so, then you’re most likely getting along better? have your symptoms changed for the better.
    I have to be honest – these questions – I would talk and ask to my sister for years – and I was just sick to my stomach, as whe would tell me, they don’t care – I have to go searching for the info – I have to tell them to take exrays, by the time she left this earth, she could of had her medical degree. The medical world to me is one big joke. I hold them responsible for my sister’s deteriorating health, most people’s health. If you’re not rich with a team of people assigned to you, you’re left for dead. But I walked the road with my sister, sue, and I knew her world- and once she was a beautiful – super power corp woman, just left deteriorating. And you know, it’s not just the medical world,family and friends too, just up and escape – mind boggling to me. So I do know exactly what you mean. But I love your attitude, my sister too, was a ball of fire, up until the point she decided to let go.

    If I may ask, what area do you live in? I find that makes a difference too. Sue was in Cleveland Tennessee- and didn’t have health insurance in the last 3 years- they didn’t want to know her name, every time she was admitted to the hosp, because her immune system was shot.

    people don’t understand, because it would take time from living their life – to care and have compassion is truly to feel one’s pain, and to give out of pure love or self, is something I find less and less of these days.

    glad you found my message. I’ve been working on business receipts online, my husband, spends thousands and thousand of dollars every month on business,and though he charges everything on corp card- they have to be backed up. He apparently has the worst reputation in whole company for not doing his reimbursements, for last two years they let him slack along not doing them, but now, now paper work, they take it directly out of his paycheck – which basically means – we don’t get his pay check. Messy stuff, and a behavior of his that sucks my energy – just another one on the list. brtw, he’s medical guy and scientist – kind of the worlds leading genetic person.

    tell me more about your meds, good thing is Gerry knows every medicine in the world and all the bad combinations and best new meds for different diseases and symptoms.

    anita

    • Hi Anita,

      I’m in England and, with the time difference, it’s close to midnight and I’m winding down. So, can I offer you a couple of posts to read – should answer your questions about Addison’s (and I’m lucky the damn thing hasn’t already killed me!).

      I wrote this to my GP a week ago – he ignored it http://ronsrants.wordpress.com/2014/03/20/a-letter-to-my-doctor-re-addisons-disease/ I know he’s read it because I told him I’d changed my Hydrocortisone dose, and that change was taken into account on my prescription a few days ago.

      This one I’ll be sending tomorrow (all letters go by fax – old tech but secure, where email isn’t) http://ronsrants.wordpress.com/2014/03/26/addisons-disease-another-letter-to-my-gp/

      You can also find me on Wellsphere, as a Patient Expert (Platinum grade, last time I looked), on COPD. Though I don’t write much about that these days as I pretty much exhausted the subject years ago. Basically, they just republish my posts, but it puts me in front of another audience.

      Right, time for my last meds then read for a while before bed – something I’ve been doing since I was 3. Hopefully I’ll finish the book soon ;-)

      Catch you tomorrow. Oh, and if you reply can you use one of these two posts? Thanks.

      Ron.

    • One thing I tell my readers – if you’re chronically sick you owe it to yourself to know at least as much as your doctors, and preferably more. You’ll live longer!

      When I was young it was hard work, hitting the books and journals in the library. These days, online, it’s very easy – something most doctors don’t realise. And I’ve yet to meet a doctor who appreciates a well-informed patient, because they have to be scrupulously honest with us – no BS because they won’t get away with it!

      Ron.

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