PIP makes you sick!

Three months ago I was summoned for an assessment to change to PIP. The assessment was performed by a woman who was rather like a large Rottweiler that one sensed had a hair trigger of a temper but was a bit unreadable; she seemed quite nice, actually, but underneath one sensed a potential for viciousness and although she didn't evidence it overtly, occasionally she would fire a warning shot across the bows in the form of a retort that she wasn't quite fast enough to stop. It felt a bit like one of those silent lifts of the lip a dog gives that makes one's heart skip a beat far faster than an audible growl!

She was very 'thorough' in that she asked me the same questions in ten different ways and at one point I felt so ill from it all I had to lie down. But she was very familiar with CFS and was open enough to volunteer information about it that my better half and I weren’t aware of. She was in part at least quite kindly but very much on the alert for scammers; she was actively looking for, and trying to elicit, being tricked. I guess that’s her job and she must have to deal with some real bar-stewards, so she’ll have developed a shell of granite and a no-nonsense approach that has all the finesse of a steam roller. But this meant that she didn’t ‘buy’ some of what I was trying to tell her, and dismissed some of the truths; for example, she didn’t believe that I absolutely can’t plan and execute journeys to unknown destinations, or that I find it difficult to marshal my thoughts in unfamiliar setting which causes a cognitive grinding to a halt, which in effect made me out to be a liar when I am most certainly not.

However, she recognised that I wasn’t able to even walk on my worst days and that most times I don’t go out even for a stroll, so she ‘awarded’ me the higher rate for mobility but the lower rate for care, even though I can't make myself even a sandwich most of the time, let alone a "simple meal". I can cope with the resultant ‘award’ but, oddly, I am left feeling uncomfortable that she didn’t fully believe me, for example about the planning of journeys or the cognitive crashing! Either I am super sensitive about being disbelieved or I am troubled that this might influence the outcome for a reassessment for ESA, which I think was due a few weeks ago but about which I have heard nothing.

But here’s the weirdest thing – since that assessment I have felt like I have relapsed even further; I think the stress of it all has affected me so much that overall I am worse now than before it, and haven’t been able to fully pick myself up even nearly two months later. I am more worried about myself, noticing that I seem to be deteriorating in some ways. For example, the pain in my every-bloody-where has got worse, my brain fog and forgetfulness is really worrying me and my heart rate has increased. Which is why I am here at this ungodly hour (been messaging and composing this since 3.30 a.m.!); pre-dawn and the darkest hours, etc.

I'm finding that my resting pulse rate is up from about 60 bpm pre-NDT/Levo only, to around 80, give or take a few. But at around 3 in the morning when I find myself waking up suddenly for no apparent reason it seems to get much higher. I've been down the Levo only, Levo + T3, T3 only (anaemic attempt at circadian) routes and could not find a consistent 'getting better' place, so I'm sticking to the Naturethroid, dropping from 2 grains back down to 1 and a half a day because the bounding, rapid heart rate is really frightening, especially coupled with the fear of atrial fibrillation; the "is it? isn't it? is it? isn't it?" seesaw is killing me!

My plan is to gently knuckle down and slowly read my way through the books I have amassed on this damned thyroid stuff, but have never read, and create a cohesive plan. The only problem is that the thyroid crap prevents me from concentrating for longer than it takes scramble an egg, which is why I have never read the s**ding books in the first place, hoping that the wisdom and knowledge contained therein will pass, by some magical form of nocturnal etheric osmosis, from the shelf into my brain. The whole brain/memory thing has worsened since the bl***y PIP assault. But, if I'm not experiencing the early signs of dementia, how come someone who can write all this keeps chucking food scraps into the bread bin rather than the peelie bin, or keeps leaving the gas on on the cooker, or can't recall what the hell she went upstairs for and wasted a make-a-cup-of-tea's worth of energy, only to recall what it was once back down at the bottom of the stairs but is now too tired to go back up the stairs to get it - twice? What the *$"~#?

88 Replies

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  • Just in case no-one reads my post - I have!

  • I loved your writing style too. It almost inspired me to start my own nurse Ratched (as in the movie One flew over the Cuckoo's Nest) rant.

    I've met several similiar to the Rottweiler analogy. Beautiful description! What is it with women jobs worths in the medical field? They can be the nastiest toughest nuts I've come across here in the UK.

    Sorry to all us fellow females, as I'm one, but it needs to be said!!

  • And when they get it wrong, as they frequently do, because let's face it, how do you manage children, a husband and keep up with medicine the way a man can who has a wife supporting him? ... But when they get it wrong, and it costs you years of recovering to get to where you used to be before they decided to change your medication, put you on statins, after decreasing your thyroid medication and your cholesterol goes way up..

    When you can't walk anymore past 4 blocks when you used to walk miles only a year earlier.. when you have an ear drum burst because they didn't believe you 3 times when you told them you had an inner ear infection, etc etc etc.. Never ever an apology.

    Nope. They don't even think it is necessary. Their ego's for some reason can't compute they might be missing something in their professional life, like competence. OK.. rant done.

  • Just one thing - in my experience, the men with wives to support them don't keep up with the literature either!!!

  • Don't think most of them keep up with it all, to be frank!

  • Agreed!

  • WRONG !

  • Hi, Karen - thanks for your compliments. so sorry to hear you've had lousy experiences too - what the h*** is going on? It seems that the medical profession just ain't attracting vocational practitioners, but more like people who need their fragile egos shored-up, by the sounds of it! Keep on trucking, girl!

  • I posted this earlier:

    healthunlocked.com/thyroidu...

  • Oh Schenks,

    That is awful.... A PIP visit is supposed to encourage you to be able to manage and give you hope that help is out there.

    You certainly write well ....perhaps as a new career you could be an author..?

    Although the content of your post was sad//annoying//frustrating//etc..

    .I thoroughly enjoyed your style.

    We are all good at something...sometimes it is just finding it that's hard.

    Thank you for posting your experience and I hope your "help" works out well.

    Flower

  • Dear schenks, I would like to second flower,s reply. Your writing is very powerful. How to use this talent. That's another question. Certainly worthy of being in the media, however you are not well to cope with all of that. So, first look after yourself. How well do you get on with your gp? You could show him your post on here, or send a copy to him with a covering letter asking him for help. If he says he has done all he can. Next ask him if he could refer you to someone who could help. If all else fails, and I sincerely hope it does not post on to your MP together with comments from your GP. If you feel this is something you felt able to do, let your GP know your intention to contact your MP. Is there someone who would support you with this? Hope so.

  • Golly, Holly, the media? Now that's be a laugh! A fat, half-baked, snoozy, achy old bat with a neat turn of phrase ... need a penis to make it in the media with those scores on the doors! But you are so kind, thank you.

    The GP is the non-penis-but quasi iron-clacker bag type (i.e. female medic) and can only listen at 90 miles and hour, so only hears every tenth word and just shoves me off to the next schmuck who knows less than admin on here, so it's a bit of a non-starter! Still ... writing ... hmmm!!

  • Sorry about your GP. Could you change. Writing to her instead might just change her mind! She would have the chance to see your hidden talent.

  • Flower - you are so kind. Thanks for the encouragement - and actually, I think that that is what has been missing ... encouragement. Well, I'm getting it now! I really am thinking about writing in some way. Mind you, at my pace it'll be years before I put ti together!

  • Schenks,

    The time frame or even the final piece isn't important.......it is about the journey.

    Enjoy your new found talent,

    Flower

  • I think, because you might not be on an optimal dose that the stress of the PIP has caused you to relapse slightly. Also that our adrenals are put under strain when we are being 'tested'.

    Maybe just drop down by a 1/4 dose rather than 1/2 as the effect will not be so severe if you don't really need a reduction.

    I've found that some memory dysfunction has occurred but am hopeful that it will right itself in a short while. I think a lot of us know what its like to 'go there for 'that' but then have forgotten when we get there what our purpose was initially'. The fact that I feel well otherwise I'm not too worried.

    You still sound as if you're still not on an optimum of meds yet. My heart rate used to rise also early morning but heart has been tested and I have no problems so, again, I think that's due our adrenals.

    medhelp.org/posts/Heart-Dis...

  • Hi, Shaws. Voice of sanity - thanks for the link and yep! That looks like it alright. My heart sometimes beats faster during the day, too. Why is that a sign of suboptimal?

    Thanks for the tip about the 1/4 dose - going to do that - far better idea. But the bit about the optimal dose and stress - do you mean that a suboptimal dose means that I will respond more badly to stress? Can you guide me to info on that loop? (Still not started wading the literature).

    At least I'm not alone with the memory dysfunction - have you been worried?

  • Re memory function, I'm not too worried yet as sometimes we can think or worry too much unnecessarily.

    Thyroid hormone replacement is supposed to resolve our clinical symptoms and the docs seem to believe that as long as our TSH is in 'range' that we cannot possibly still be hypo with 'in range' TSH. They also believe that levothyroxine is the only thing to prescribe.

    Many of us know that's not right and we don't need a medical degree to solve that 'nonsense'. We know how we feel and if on the correct dose of thyroid hormones we should have no symptoms and feel well (even if not 100%).

    If we aren't we can get anxiety and stress and worry because we are puzzled why we aren't improving. Before I was diagnosed my heart began playing up for the first time, later on when I began to research, then finally on meds which suited me I realised it was the lack of hormones that caused my heart to struggle a bit.

    Studies have shown that thyroid hormones can improve the heart's condition and also reduces cholesterol levels.

  • What a well written post! My heart goes out to you.

    You seem to have a plan. Read the books and just take one step at a time. You will get there!

    Keep us posted.

  • Thanks, Clive - will do.

  • First of all I must congratulate you on your concise memory for detail, especially for someone who thinks she's getting dementia.

    I doubt if I could compose such a descriptive letter.

    Anyway, as a fellow sufferer of an underactive thyroid gland as well as Avascular Necrosis congratulations on getting your PIP.

  • Thank you - for both.

    Now you put it like that I suppose my brain is still functioning reasonably. It's just that the PIP assessor, when I told her of my cognitive impairment, how it affects me and that the GP told me not to worry because if it was Alzheimer's I wouldn't be noticing I have a problem replied, "well actually, in early onset Alzheimer's it is precisely the patient noticing problems that is the first sign"! Now, looking back, no wonder I've come away feeling like ordure!

  • Hi there read your post with great interest, I am suffering same sorts of things after failing my recent PIP assement, I suffer from depression and anxiety and have now been unable to work or do much at all as my concentration is not there anymore,

    Having almost identical memory problems as yourself, the way you describe your experience at the assement, we must have had the same one!

    I have just started the appeal process, I was awarded pIP last year high rate care no mobility because I can walk, I was OK about that as some day I can walk. Long distances, the planning a route is one they picked to fail me on because my partner used a GPS and I looked at the moving map, what the hell that's got to do with planing a route surely the GPS is planning for you, then there was cooking a meal, my partner has AF and arthritis and serious pain on most joints plus really bad breathing problems and is being assessed for restricted breathing, before this she did most of the cooking I did a little, it has now been reversed so that I have to do most cooking as she cannot stand and because of the lack of oxygen only slight exertion such as washing up sees her gasping for air, failed pIP because I cook, if I did not we would not eat fresh food, so try to do the cooking.

    Makes me mad as for fifty years I have paid my NI !oly to be told when you need it you have failed so you get nothing!!

    Really has not done any good, used to self harm just gone back to that after getting the refusal letter.

    Yours was a great post and hope you get what your due from pIP

    Kind regards Tony

  • Tony, your experience has sickened me. Have you appealed? Because you would surely win an appeal and there are people out there who will help you - Citizen's Advice Bureau is a great place to start - you really do need to get help to do something about this dreadful experience. Not only is it not just, but it is so wrong on all counts. There are places to get support - just ask here on the forum ... I did and got great advice both in practical terms as well as guidance on where to get help. Let us know how you get on - but get asking! And hang on in there - you are worth it.

    Kindest regards.

  • Hi again thanks for your kind reply, I have just got some valuable info off this site, something I did not know, I have found out I can ask for a copy of the report that was sent to the DWP, I have asked them to look again at my claim, so will be sending a letter to them asking for a copy of the report. I will contact the local citizen advice bureau and see what help can be had.

    Kind Regards Tony

  • Sorry - missed this little gem. Brilliant, Tony. Ask again on here all the way. Do you have a diagnosis from your GP, by the way?

  • hi there shenks , love the causticness of the post ,just 1 thing you didn't specify ----- who exactly did the rottweiller actually work for ? ..... because if it was an outside agency [ atos in particular ] and you insist on a full copy of the report , which you are legally entitled to , please check and dissect every page .... they often state different things about the same thing /item /ability on different pages ----- THAT ALLOWS YOU TO FULLY CHALLENGE THE DECISION and if proved with the medical back up from your g.p. the original decision will generally always be reversed to the higher levels that you need .....alan x

  • Hi, Alan - you get the tone! The Rottie worked for Atos, surprise surprise. I came away thinking she was not too bad, except that each time I revisit the memory it's like electric shock treatment as I recall more things she said! Such as letting me know that my GP might be wrong in saying that I'm cognitively fine and I might just be showing early onset cognitive decline. I thought at the time it was spiteful but hadn't really clocked it until now. Nice, eh?

    As for challenging the decision, the advice is that if I can live with it it is better not to challenge since often the resulting decision can take everything awarded away! Spite again, I guess. But I can live with the award as long as perverse reasoning doesn't cloud any future decision with other benefits. But still, I now have a consultant in rehabilitative medicine to back up what I'm saying, and my 'explanation' to the GP of the effects of her uncaring dismissiveness in response to a request for information from Atos seems to have had an effect - she was most chastened when she realised what damage she had given rise to. Silly bovine.

    Thanks for your support, though. x

  • Hi!!!

    I was in this position a few years back,, well a similar position!!! After having my daughter in 2009 I developed an inner ear problem causing me severe debilitating vertigo, it peaked 18 months after my daughter was born and I came out of my job on the sick, year down the line I'm still severely ill can't lifty head up, lost all my motherly duties, cut a long story short, it was horrific, I wanted to die... Never claimed a penny off the government, I was a 35 year old who worked a full time job and also a part time job 2 evenings to support myself but of course I couldn't continue

    Tried to claim employment support, went on it , needed an assessment...

    Cancelled it 2x due to physically not being able to get there, 3 rd time I wish I'd never gone, the assessor was a polite smiley nice lady, explained I couldn't even get myself out of the bath, so degrading. I looked like a drug addict I was so ill, however failed my assessment, told that although I'd not be able to do a lot of jobs, I'd still be suitable for some!!!! Really? Could I get a job lying down all day???

    Took it to appeal

    Of course I walked into the court, sat down, in there a matter of 5 minutes, explained the process, asked my thoughts and they told me of course I had won my appeal...

    They had decided this before I walked through the door!!!

    What a relief I felt!!!

    I hope all goes in your favour, genuinely ill people should not have to go through this x

  • God, what we are put through. Punished for being ill. It is a disgrace. How can this Government get away with this and still get voted back in? What the heck is happening to our society?

  • It does seem odd to award you the one and not the other too. From my experience too of the PIP assessment carried out by Atos, mine was a young nurse who did not write my side of the conversation. She either blatantly lied or confused me with someone else. And talking of confusion they have a knack of confusing us poorly people in front of them. I have had 2 assessments recently and on both occasions they have left me blank minded from confusion! Needless to say I am appealing their decision and now have a copy of her report of the assessment. Meanwhile I have been awarded ESA support rate now but unfortuneatley it can take months even over a year to get an assessment due to a backlog within Atos and whoever else manages them. They wil pay the backpayments but quite frankly I need them sooner rather than later you TWATS lol. This delay from living on £70 per week to £100 ish is painful and you are pretty much housebound once you have eaten and heated your home. I ended up writing to my MP with my National Insurance number and congratualting him on his lovely wage rise now help me get mine please! I got a date pretty soon after this. I also have a disability support worker helping me now and this helps a lot he knows what he is doing and will not allow them to misguide the conversation. I agree this whole process makes you worse not better. The longer they delay the help and support the longer the help and support will be needed so waving the finger at the sick and diabled is completely WRONG!

  • If it's not too rude a question, how did you get a support worker? I have managed to get my PIP sorted, but always wondered if I would be eligible for other kinds of support and no idea how to get it.

  • it isn't ,as such , a support worker .... it is that they 'put ' you in ' a support group section ' which mainly means that you do not have to sign on every day/week etc ' .....it then comes with other things if you find them out ..... but as with everything else WE HAVE TO FIND THEM OUT FOR OURSELVES ..........ALAN XXX

  • I'm in the support group category, but didn't know there was any other support available. How do you access it?

  • Mine came via my housing association first as i was in arrears and they try and raise funds to help pay the rent. Then i lost contact with him for a while but he came back via my contacting my local council asking what support is available for me not being able to cope. He works for a disability charity in surrey. He is a benefits adviser and attends assessments and takes care of paperwork. When I actually get some money i do need more support to help maintain my home when i find it i will let you guys know.

  • I feel for you, but am very pleased you got an award. I have multiple health problems but because I have crawled my way out of a pit of despair and back to some sort of mobility by taking dozens of expensive supplements, having regular private therapy (paid for by selling my home) and being on constant antibiotics I do not qualify because I do not take prescription medication (I have porphyria and it almost killed me). I went to appeal and got even less points because I "look like a businesswoman".

    It sounds as though the stress has wiped out all your resources and you seem to be like me - too conscientious for your own good and therefore heartbroken if someone doesn't believe you. I have recently discovered that B6, niacinamide and zinc can make a huge difference to those anxious feelings. After my PIP hearing the depression lasted hours rather than days as it would have a few months ago.

    If you haven't heard of it then look into pyroluria and see if the symptoms sound like you. I hope you feel loads better soon x

    joanmathewslarson.com/HRC_2...

  • Thank you so much for providing the link to this website.

  • it does appear that the more you can help yourself the less they will help you. Its when you run out of money and access to money then it becomes desperate becasue you basically starve and freeze to death lol

  • Thanks, donnald, will do. so sad to hear of your dreadful story - it makes me so despondent. How the hell can we change all this, if this vile bunch of Eaton Messes keep on getting back in?

  • I wish I knew the answer :-( They should come and live with us for a week perhaps. If only there was a way of transferring pain, like a Vulcan death grip that lets them feel our symptoms for a few hours. They would be throwing resources at us if they had any concept of what we go through just to keep on breathing day after day.

  • You've got it.Their lives are so far removed from reality - as they were, for the most part, removed from their families as children and sent to boarding schools (for example,Cameron and Johnson were only 7 years old when they were sent away from their families, as was Clegg,part-time, and over 50% of the 'upper echelons' in government); they simply do not have the the capacity to empathise.

    It's explained by Attachment Theory, and it shows that children who do not receive the love, support and acceptance from their parents - principally mother but the main care-giver in reality - do not have the ability to read their own internal signals of need because they were never taught how to do so.

    This them makes them angry at those who do display some sort of need, the anger reserved for the original perpetrator of the lack of care, the parent, is displaced from their own unmet needs onto those whose needs are perceived as needy, or weak. It is a very sick dynamic, and until the voting population wise-up we are going to be in the grip of these emotionally stunted and dangerous individuals. And I'm serious - they are emotionally damaged, angry and bitter people who project their ills onto those whom they can - the powerless, the disempowered and those who are disabled in other ways.

  • You were very brave to endure such an ordeal with humour Schenks. I had the same thought as Flower that you could do well with your writing...

    Re. ME diagnosis, I wondered if you've seen this before. My relative was diagnosed with ME for years and then dementia. It turned out to be severe B12 deficiency:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

    We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands....."

    martynhooper.com/2014/06/15...

    b12deficiency.info/b12-writ... (List of symptoms and an excellent film)

    PS. Four members of the family have Hashimoto's autoimmune - often linked both ways with PA/B12 def.

  • Thank you so much for a link to these articles.

  • My doctor tested me 2x, first time was abnormal then normal but she wont give me b12 unless it is abnormal.

  • Jee - thanks for this Polaris. I'm seeing an ME/CFS specialist and will be asking him to recommend the B12 injections. Can't hurt (no pun intended!) and will be a definitive answer if the symptoms recede. And thanks so much for the links - can't quite get my head round it all but will work on it so that I sound at least half intelligent when I go and see him.

  • Wow you were very brave to go through that"" interrogation " but I suppose desperation gets us through somehow. I wish I could offer some words of wisdom to help you but all I can offer is maybe you could try to stop the tea drinking it is contaminated with fluoride which hinders thyroid working. I found about this on web and stopped drinking tea even organic tea and now drink chickory coffee and it has helped me. But of course we are all different and have to find and research what helps us. This stopping the tea helped me a lot. So bless you and hope you will soon feel better.

  • Thanks so much, win - appreciate the heads-up.

  • What a brave woman you are. Am so sorry you have been put through this -you & all the other people who have been through this awful process. I read the other day that 250000 terminally ill cancer patients had been told they were fit to work and all benefits stopped weeks before they died.if the dying ain't heard what hope do the rest of you have? Am ashamed to be a member of our country as our government is hell bent on penalising the sick and disabled. am mystified by how they got elected!!

    I myself have been going through a year of cancer treatment which has rendered me incapable to work but am not eligible for anything more than ESA as my condition is now deemed unstable -apparently you have to get a doctor to say that you will stay the same for a whole year ahead before you are eligible -what oncologist will say that they don't have a crystal ball!! So in reality though this is scant comfort it sounds like you somehow navigated this well.....arggh. I wish you well with your appeal and am so sorry to hear the stress of that dreadful process has set you back. I agree you are probably under medicated as this can cause a fast heart rate.

    I also agree that you are a very talented writer. 😊

    Sending you big big hugs xxxx

  • Oooo - hugs gratefully accepted, as well as the compliment on my writing. But what a sh***y situation you are in. I'm sure that there is more that can be done to help you. Have you been advised by for example, the CAB? There are ways to make these bar stewards listen to us and be honest in their recommendations as opposed to number crunch as Osbourne's henchmen. ME/CFS is also variable, but they have to recognise that and take it into account. There is no definitive answer as to if the damn disease will ever go into permanent remission, but they can't use that to tell us to whatsit off - you need advice, Wavey - have you been able to access any?

    And I get the cancer thing - I fought off Non-Hodgkin's Lymphoma in 2001 - you can get better.

    Big, fat hugs to you too, honey chops. (((((((((())))))))))))

  • Thanks Shenks. Am on my way up so for me it all seems to be working out well. Nope there's nothing that CAB can do -Macmillain are trying to fight it but am afraid cancer patients are not even allowed to apply for the first six months after diagnosis and can only apply then if the doctors deem you are going to be the same way for another year!! Under the old DLA scheme cancer patients could apply successfully. Am afraid typical of our present government that they set things to hit the sick and disabled the most!!

    Am lucky as I have a very sympathetic employer or life would have been extremely tough.

    Hope you enjoyed your well deserved break 😊 xx

  • Thanks, Wavey - I did enjoy it. And I'm glad you're on your way up. Maybe we now need a change of Government. Like I said, Corbyn intrigues me.

  • Sound like you are in a bad place at the moment and I am so sorry you are suffering. Life can be a nightmare with the sort of symptoms you describe. I was in a similar position myself and I didn't look ill enough to be taken seriously. My symptoms varied from my first pregnancy onwards and even after diagnosis and treatment years later, I remember going on a health assessment once, and my mind and body turning into jelly, but I do know that it is human nature to present your symptoms to be better than they really are, so well done if you managed not to fall into that trap under the stern questioning of MS Rottweiler. If you are still feeling angry, just think she is doing a difficult job, and although I don't agree that people should have to be interrogated in this way, until a better system is devised, it will be continued, making genuinely ill folk feel worse than ever.

    Time to move on and take one tiny step at a time. If you can read the odd chapter of a recommended book, without falling asleep (like I used to do),then go back and read it again until you grasp the meaning. Diet, exercise, and state of mind can as important as drugs in my opinion. After many years of feeling awful on T4, I came off a couple of years ago (was only on 50ml and this seemed to be the right thing for me to try, whilst being monitored by a sympathetic endocrinologist) and now concentrate on improving my lifestyle. Still have symptoms that make me unhappy (and useless sometimes) but I believe I am improving most of the time. As you grow older, your memory often suffers anyway, and I do the sort of silly things you mention, like leaving the tap running all night and putting things back in the wrong place then spending hours looking for them.

    You have a plan, and that is great. The thing is, to believe you will get better and make it your business to get the facts you need and not trust doctors too much, as in my experience they are poorly trained in thyroid disease. I wish you lots of luck.

  • Shenks, whateva beautifully written story! So much of this chimes with my own experience of applying for PIP and ESA. The thing I hated the most about it, is that you are forced to talk about your illness in the most negative, pessimistic terms all the time, and not just talk, but actually fight. Whereas left to my own devices I like to celebrate the little victories every day, focus on what I can do, and ignore that big, wild world of things that I can't access. I found that made me much worse around that time. My eyes were focused on the ground, instead of up at the sunshine. I also found I felt like a dreadful liar any time I was well enough to go outside or to wash as few pants in the sink, because it's so dreadful to be under scrutiny. As sick and disabled people we are under scrutiny all the time from doctors, family, friends, bus conductors, everyone, who all aren't impressed that we're sick in the way they want us to be, and its always a painful nuisance.

    Also, like you, I felt weird about which parts I had been offered. I got the higher rate of mobility, but was one point away from the lower rate of personal care. This didn't seem fair to me, because not going outside doesn't effect me that much, whereas getting enough to eat and drink is a constant struggle. I had to really work to remind myself that it doesn't matter where the silly money comes from, at least I've got some and it's the difference between being able to afford to stay in my flat or not.

    I think it's important to remember that you've actually done well, you've got nearly all the benefit available. From what I've heard from other people on this forum it's actually very common for people to be given the top rate of one half, and then none of the other. I think they do it on purpose. So actually you've broken through that barrier, which is great. It doesn't matter what that nasty woman thought about whether you can plan journeys, because you got top marks on that part of the form, anyway!

  • Thank you for this, Avocado; I know exactly what you mean about feeling paranoid when once every few weeks i feel well enough to, say, hire an electric tramper at the local river walk to 'walk' the dogs, or to shuffle round a local mini store - never on my own anymore. But I like the 'looking at the ground not the sunshine' analogy; I think that having to tell it like it is, rather than blind-siding the negative stuff, brings the latter into such deep focus that it is a shock to the system to realise just how much I has to navigate, just how disabled I have become.

    I'm finding it hard to be grateful for losing nearly £100 per month as opposed to being denied what I am rightfully entitled to to just try to live in order to find a way into being human again. We are living in an increasingly sick society, but that is coming from the top tier from which our rulers - not governors - are being promoted. How has this happened? Beats me.

  • I can't read all that you've written cos I'm too ill. However I applied for pip and was awarded zero points despite spending half the assessment having to lie on the floor because I have orthostatic intolerance. The me ducal report basically said that as I cd fill in the form and get to the assessment - ignoring the fact my partner filled in the form and drove me to the assessment - this proved there was nothing wrong with me. It was also filled with loads of other complete lies and tosh. I asked for a mandatory review , well my partner did, still scored zero and am currently waiting for a tribunal date. The whole thing has Made me very very sick, yes the stress and the anger and injustice of basically being called a liar.

    I have more or less stabilised back to my 50% of the day in bed level of health after several months, but obviously dread the tribunal and how it will impact.

    Low cortisol is a classic m.e problem so of course this kind of stress makes us feel very ill and drags us back. It is horrid to be treated like a liar. For me it was made especially hard as I have been ill for 4 yrs before even applying, if I was defrauding why Wd I wait 4 years?

    I don't expect to win at tribunal and I know it will set me back again, but I can't bear not to challenge the assault on my character.

    All I can say is good luck in letting it go. It's hard isn't it?

  • It's bloo** hard to let go. Have you had advice on your tribunal? Youi should, you know. And arm yourself with reports from all the relevant doctors and medics - when you are this ill, you cannot be denied. Anyway, I understand that the Government is to be investigated for how we are being treated at an international level. Doesn't help us much, though, does it?

    Sending you love and peace. x

  • Thanks Schenks - the CAB are handling the appeal but unfortunately because of the cuts they can't send anyone to advocate for me. The whole problem with having m.e is there is no medical evidence, I haven't seen a specialist since I was diagnosed four years ago as there is nothing they offer. I have seen an endo for the hypothyroidism but he can't comment on what my daily life is. It is ridiculous because at the end of the day unless you live with me and witness first hand how I suffer it is all hearsay, there is no medical evidence to measure exhaustion, and other symptoms is there? Even if you have cancer there is no actual evidence for your symptoms only that you have a tumour and require treatment. MY GP has written a good letter, as the DWP failed to ask for her opinion originally. I will have to wait for Jeremy Corbyn to become prime minister and treat us sick people more fairly! I can live in hope at least. ;-)

  • I feel for you, I really do. As for there being no evidence for ME, if you have been diagnosed, that is the evidence. ME is recognised as a disabling illness by NICE. It can't be fobbed-off. And as the GP explained, she can't comment on daily life - only what I tell her my life is like, so there is no excuse for them not to award you. Have you looked at the site Action for ME? I got a lot of help from there. You can speak to an in-house advisor; maybe give them a ring?

    I'm intrigued by Corbyn, too.

    Thinking of you.

  • Thanks Shrenk - the health report was quite clear there is nothing I can prove apart from my diagnosis. She even said things like 'claims to be hypothyroid' 'claims to have M.E' despite having documents to prove it. It's just a game to them. If I had cancer I couldn't prove I felt sick, or was tired etc, I could only prove I was undergoing treatment. No one can prove most of the feelinsg of ill health of any disease. It's crazy. Tribunals are reported to be more humane. I hope so I am dreading it.

  • Their whole existance is based around the belief that everyone is a 'scrounger' does not want to work and is capable. I had an ATOS interview that went much the same! They have targets for getting people OFF benefits and support of any kind, I am so sorry you got caught up in this.

  • I congratulate you on not actually losing your temper, Schenks. I've never ever tried applying for any outside help (financial or otherwise) as I have been told that they would turn me down. I had to give up my own successful business because I was so unwell and, of course, being self-employed seems to mean that I was entitled to even less (even though I have always paid tax and National Insurance). Because we now own our own home and my husband works means I am too rich, apparently. Never mind that we need to eat. My husband is great about everything, but I feel like a second-class citizen, a total non-entity. I contribute nothing to anything :(

    Every now and again, I wonder about seeing if I could claim anything but reading all these awful tales of fighting the system is something I know I can't cope with. It's bad enough having a doctor not believe your symptoms, let alone a non-medical jobsworth too.

    I really hope that you get a good outcome.

  • beansmummy, PIP is the one that currently isn't means tested, so you are just as eligible for it as anyone. It can also lead to a motability vehicle, and inmy area a disabled bus pass.

  • I didn't know that, I shall investigate - thanks.

  • Beans - what the hell? You need to get advice - how come no-one is getting advice? There are places where you can get support for all of this. Of course you are entitled; that's what NI is for. Surely you could start at the CAB? For Heaven's sake - this is what the bar steward government pigs want - for us all to eff off and die.

    As for an outcome - this is the outcome - I'm not going to challenge it at this stage because their scare tactics have worked. Please God, that the International community (can't remember the title) take these - b****ards (sorry, admin, can't avoid the rage any longer) to court for the way the weakest and most vulnerable of our society are being crucified because these rich pigs have no idea either what it is like to not be able to make ends meet, or what it takes to crawl out of a hole, both health-wise or financially. That it takes a long, long time to repair the infrastructure that is damaged as a result of the money from our taxes being withheld from paying for its upkeep; therefore hospitals, the NHS, Social Services, the Police, Fire Service, schools and other stanchions of a civilized society can never recover from being utterly decimated through being starved of finances.

    But how would bloated plutocrats understand such issues when their only horror would be to owe money, for which read, not to have enough money? so they project their fear onto those who embody those fears and then crucify them, sending them into the wilderness to starve to death for their sins, like scapegoats of old.

    It's called projection, and heart-hardened, boarding-school abandoned desperate little boys and girls who grow up into vindictive caesars embody it in this country. It is shameful.

    Get some advice, Beans old girl. You are owed this support. Know what you mean about feeling worthless - but to read it from someone else makes me angry - for myself as well as you and all the others.

  • I’m not disabled and I am not in need of care though. I am just not fit enough to work. My husband works, we own our house now, we are not in dire straits financially even though we are living on just one income. As long as I restrict how much I do, I manage reasonably OK compared to so many other people. I feel lucky that I am in that situation, and appreciate that many people are not.

    I’ve been googling, and I honestly do not believe that I would get anywhere trying to claim anything.

  • I am in your exact position BeansMummy.

    We are self employed with two businesses and my poor ..(.. exhausted..).. husband is trying. . (.unsuccessfully..) ..to run both...!!!

    I am not well enough to work at present .... my original 6 months off has stretched to 10 and I can't see an imminent end....

    The real joke is .....we are in the worst financial position we have EVER been in and yet I have to continue to spend the money we HAVE NOT got coming in anymore ..... on trying to recover my health ....... because the National Health Service have nothing left to offer me......let alone any financial benefits being available to someone in my position..! ! ! !

    Being self employed when you are ill.....really sucks..! ! !

    Flower

  • My bog standard reply to just about anything these days is “the system stinks”.

    I don’t want to fight “the system” to see if I can squeeze money out of them. I can’t deal with any level of stress in my life at the best of times. I’ve got to grips with the fact that I have taken very very early retirement (with no pension in sight for many years yet), but resent the fact that I have had to. My husband is unbelievably supportive, thank goodness.

    I try not to think about getting old and having to rely on this system for my care. I am under no illusion that they will suddenly look after me when I am incapable of doing it for myself either, financially or medically. Scary.

    Blimey, I have turned into a grumpy old woman, with such a jaded view of society. I blame my thyroid for that too.

  • Again...I shadow your words BeansMummy,

    I am unable to tolerate stress...it is definately part of our illness as I never used to be like this.

    We are all paid up with our tax and national insurance but when for the first time in my 36 years of working..I hit a sticky patch...there is just no help....nothing..! !

    Although have sensibly reduced staff & all outgoings except my medical bills. ..(! ! ! ).... if we go under, it isn't just myself and my husband they will have to bail out....! ! !

    F

  • I used to think that “stress” just meant that you were worried about something, and something worth worrying about at that (like car crashes or people dying). Even I think I sound pathetic trying to explain how I struggle with ANYTHING that happens in my daily life that is not part of my usual routine – that includes things like having to ring up to change a doctor appointment (or even making one!) I had to fill in a health questionnaire this week, which is totally for my benefit, and I didn’t sleep properly for 2 nights – had I put in the right information, had I left something out, had I put too much info in there. Even I know that isn’t normal!

  • God, I'm not the only one. It has to be adrenals, doesn't it? I'm going to try and work this thing out - it might be the last thing i do, but I'm going to fight to not let it be! Have you done all the adrenal testing stuff, Beansie?

  • The closest I got to anything like that was having a short synacthen test a while ago, which I already knew before I had it was a complete waste of time as I clearly didn’t have Addisons. My results showed me over range both before and after the injection of whatever-it-is they inject, but as they results didn’t “fit the pattern”, the medics said they didn’t know how to read the results so therefore decided it was OK to ignore them. I was too unwell to pursue that particular fight.

    Adrenal problems have obviously never been addressed by my GP or endocrinologist, or any other of the “ologists” I have. I recently had Blue Horizon blood tests done, and they threw in a cortisol blood test which showed I was bang slap in the middle of the range, I have no idea whether that is actually OK.

    However, I saw a private nutritionist yesterday who said my adrenals were very clearly “shot” (probably not her exact words), and it is something we will be looking at. I know that I have a problem, it’s just been yet another one which becomes too overwhelming to try to deal with (until now).

  • I completely understand. I had a synacthen test, sprung on me as a sop by the penultimate endo, at 3 in the afternoon - I learned on here that that was the wrong time anyway for a test that shows nothing.

    I get that you can't keep fighting. I have made serious forays into trying allsorts 0 T4 + T3, T3 only, NDT - Armout, thyroid-S and now Nasturethroid, but you get to the point where you are confused and debilitated by information that would be confusing to a well person, never mind someone as hamstrung as us.

    I have decided to sit at a 'baseline' of 2 grains of NDY a day, suboptimally functional and just aim to read a chapter a day of the thyroid books, making pertinent notes and finally creating a plan of action - and more or less starting from there. It'll take a few months but, unless I peg it in the meantime, I'm going nowhere else! I've been trying it too piecemeal because, like you, I just can't manage, being overwhelmed at each attempt by fresh influxes of caveats and info. I even went to a nutritionist but there was no way I could follow his advice - too hard on my own since my husband is totally foxed by it all and simply goes completely blank.

    I wonder if there would be anyone on this site who could research all the experiences we have and collate them - what a read/petition that would be. but who would take that on?

    I wish you so much peace and wellness, Beansie. And luck, luck, luck all the way.

  • I can so resonate with everything you say, Beansie.

  • I like you did not apply for four years because I did not want to have to justify my existence to some B****d in the DWP. Then a friend who is far less ill than me got awarded the enhanced rate for PIP and my financial situation got worse so I thought well if she got it I am bound to get it. I actually regret applying it has made me so ill and distressed. I am going to tribunal because I can not tolerate letting them get away with treating me like a criminal, but still I expect to fail and dread it. So I would only apply if you are prepared to be unlucky and get some pig. The best advice I can give is get them to come to you, i didn't as I didn't want them in my house, but they just used the fact I could sit in a car as evidence there is nothing wrong with me. If they'd here and assessed me where I actually spend most of my day - in bed - then they might have been less horrid to me. Good luck. It's just luck who you get, nothing to do with justice. Also go to CAB or a disabilities rights orgnaisation get them to fill it in. They seem to look more positively on that as they probably know an appeal will happen if they don't.

  • I'm sickened to read of your experiences. I really hope you can find some support - do you have a diagnosis?

  • I have been hypothyroid since 1994 and diagnosed M.E for four years now. Cortisol, Mitochondria and bad T4 to T3 conversion all factors but not the whole story. Can identify what's going wrong just not how to fix it as can't find actual cause. Am on T3 only now, NDT didn't help, but still very ill.

  • Hello, first responders! I just want to say I am totally overwhelmed by all of your responses, and very touched. I want to reply to each, but it's going to take a while (been mostly asleep today) so right off the bat, thank you so much for your support and for the compliments about my writing. This means a great deal to me - and it's really odd because it's an idea I've been toying with since all other avenues seem to have closed orf. Not sure how to express my gratitude but 'thank you' is, although an understatement, very much heartfelt.

  • "for example, she didn’t believe that I absolutely can’t plan and execute journeys to unknown destinations, or that I find it difficult to marshal my thoughts in unfamiliar setting which causes a cognitive grinding to a halt, which in effect made me out to be a liar when I am most certainly not."

    Hi Schenks,

    I just wanted to say I empathise completely with the above. I know exactly what you mean. I have always been able to write fluently throughout my entire illness, but I take ages to do so. Despite this I couldn't plan a piss-up in a brewery, losing my bearings happens all the time, trying to work out how to get from A to B is very difficult indeed, my logic has vanished, I struggle to follow a recipe or make breakfast, and my memory is bad. I think different parts of the brain are involved, so it is perfectly possible to do okay on one thing but not another.

    One thing I have found that is helping me is coconut oil. I drink one mug of real coffee with breakfast every day. I've discovered that sticking a generous teaspoon of coconut oil in the mug with the coffee has helped my brain and memory a lot. I feel much more "with it" and my thinking has become a little more nimble. I also drink a mug of instant coffee in the afternoon with another teaspoon of coconut oil. I can't stand it in tea, which is a shame. I know some people whiz coconut oil up in smoothies. If it appeals to you, you would have to find out how you can take it. My coffee solution won't be to everyone's taste. But it is definitely worth trying the coconut oil.

    I will say however, that if you like it and keep it up, then your cholesterol levels might rise. This doesn't bother me, but it may bother you.

  • Hi,

    Reading your message I really felt tht I recognised where you are at the moment. There was a point in my life when I felt totally out of control. I was in pain all the time and my relationships with all the people closest to me were becoming very negative, I felt deperate and unhappy and very strung out. The thing that helped me and has continued to help me through the downs in my life ever since I discovered it, is acupuncture. There are good acupuncturists and bad acupuncturists. The first one I went to was bad, but a friend recommended another one to me and honestly, really and truly, he changed my life. I don't know how to explain it, other than by saying he rebalanced me and, this sounds do silly, but I found myself again and with that everything got easier.

    Wherever you live, it is worth finding where your nearest good acupuncturist is and getting a course of treatments. I know that money may be an issue, but a good acupuncturist will want to help you and if you explain the situation you are in, may find a way of dealing with the financial difficulties. For example, the acupuncturist I went to treated me in exchange for some paintings I did.

  • What is PIP please.

  • Once known as : Disability Living Allowance & Mobility Allowance..

  • Schenks,

    This is a brilliant thread you've created; and the discussion is informative, helpful; and ; if I might say (with tongue in cheek) very entertaining. Thank you.

    As stated by others; you do write extremely well.

  • I posted this earlier and may have a connection.

    healthunlocked.com/thyroidu...

  • Guys - been away for the first break in 4 years and - couldn't get a blasted connection on my phone! So sorry - will reply to you from today! thanks for all your responses - for once i feel really heard!

    x

  • Today's Guardian has a story about assessments - specifically for MS, but it seems pretty darned relevant here as well:

    theguardian.com/society/201...

  • I can so identify with that. Actually, I'm going to pen it. thanks, rod.

  • Hi Schenks,

    So sorry you have been through all this.

    I feel my health has declined further than ever the last few months but i have have untold stress to deal with with not much chance of it going away. My daughter has now been diagnosed with this awful illness she been poorly a while now and only 20 and at University. Going back this weekend but ive no idea how she will manage as she not good at all.

    Ive tried all medications also and im far from well and i honestly feel that adrenals play a huge part in all this as i know when i get upset through family stuff the weeks that follow can see me in bed and not coping at all. Saliva tests in the past were on the floor for me adrenal wise. I take NDT and i was told ages ago that it can tax the adrenals because of the T3. Unfortunately CT3M didnt do anything for me.

    I hope your health improves soon.

    xxx

  • Hi, Angel - sorry for not having replied sooner, but I didn't get notified in my email, for some reason.I so feel for you - it is dreadful to have this damned disorder, but to know your daughter has it too, and at such a critical time in her life, it would seem.

    It's one thing to know that T3 can tax the adrenals, but quite another not to be advised how to manage it. The stress is the trigger for me. I am only just acknowledging that I have to give in to this illness and try to work with it, which is why I am seeing the ME/CFS service - to try to manage the symptoms whilst at the same time, work out the components idiosyncratic to me. It has only got to this stage because I'm spent, utterly spent.

    the reason i am saying this is because I wonder if you could take a similar route of least resistance? That might sound facile, but I've reached the point where, in giving in to it, I am having to learn to live in a completely different way, but at the same time I have started to work through the books on the subject and make notes that are only pertinent to me. The idea is that once I have a more cohesive set of data I can then create a plan that is unique to me.

    I have no idea how you might find a route through this crap that is unique for you, especially with the fear for your daughter, but at least it is not a fatal disease - and it can be quite liberating in a very perverse sort of way.

    I will be thinking of you, kid. God bless.

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