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Hi, my name is Tigermoth42!

Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
Hi everyone, looking forward to chatting soon 

Replies

  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Tigermoth42 and welcome to the community. It is good to have you with us.
    Your username automatically makes me wonder if you have an interest in aviation? 
    For now, when you're ready and in your own time, no pressure, perhaps you could tell us a bit more about yourself? I look forward to getting to know you better.
    Warmest best wishes,
    Richard
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi Richard, great to hear from you and I’m so glad I’ve found your community, I’m struggling with mental health and disability issues as well as my daughters mental health. It’s all rather draining but hey ho, onward and upward! You’re right, I do love flying and my husband has a private pilots licence. I did start my own journey down that route but mobility issues put paid to that as it did my love of driving fast sports cars and horse riding. I now watch horror movies, murder documentaries and knit and read. Rather boring and a tad morbid but better than stagnating! Looking forward to chatting too. 

    With my very best good wishes, Gail 
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Tigermoth42 and thank you for getting back to me. My apologies for having taken some time to reply - wish I could be here 24/7.
    My love affair with aircraft has never gone further than making plastic kits of WW1 and WW2 machines, watching related movies and visiting museums, and just once going up with my brother in a two seater. Unfortunately, the least said about my brother the better. And, of course, as part of an army family back in the 50's I travelled quite a bit in turbo prop airliners.
    I can't watch horror movies - for me that's the news of the day, pretty much every day, and whilst I can't knit I do read, extensively. On both TV and in books - especially the latter - I like good police procedurals.
    And nothing in your words suggests stagnation :smile: I am impressed.
    Would you like to give us a bit more detail as to the struggles you and your daughter face? Anything at all that might help us find the best way to be of service to you?
    Warmest best wishes, always,
    Richard
    (Oh, a book thread on site here that you might like to look at).
  • Sam_ScopeSam_Scope Posts: 6,791Administrator Scope community team
    Welcome to the community @Tigermoth42 :)
    Scope
    Senior online community officer
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Thank you so much @Sam_Scope, you’re all so supportive in my darkest moments. It’s not just my mental health and disability I’m trying to live with but also my daughters mental health. She’s probably got BPD but is undergoing assessment at the moment. It’s tough enough coping with me, with her as well I feel I’m sinking without a trace. 
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi Richard, thank you so much for the link and reply. I’ve explained a bit about my daughter in my message to @Sam_Scope above. She’s all over the place bless her, treading on eggshells isn’t in it! Combined with my severe anxiety, depression and physical disabilities I feel a bit like I’m sinking without a trace. I got my MR letter for PIP off yesterday so it’s a bit of a wait and see game. On a positive note, I discovered yesterday that, because I started with motability in 2013, I can keep my car for 26 weeks, not the 8 that it would have been had I joined the scheme in 2014. Hopefully that’ll give a bit more time to sort this mess out. They haven’t stopped my PIP entirely, just reduced it to standard care only instead of enhanced rate of both. At least I’ve got something coming in to help my daily struggle. Interestingly, I had a medical assessment recently for ESA and they put me in the support group with disability guarantee (or whatever it is) without hesitation. Trusting you have a peaceful day, warmest wishes Gail 
  • Pippa_ScopePippa_Scope Posts: 5,239Administrator Scope community team
    Lovely to meet you, @Tigermoth42!

    It sounds as though you're dealing with a lot at the moment but good to hear that things are moving forwards for both you and your daughter: I hope you get the answers you need. If there's anything we can advise you on at the moment, do let us know. 
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi Gail @Tigermoth42 and thank you for getting back to m and to Sam. For what little it may be worth, you have my respect and my admiration for coping so well . As Sam says, do get back to us if there is anything you so much as 'think' we might be able to do to help.
    Warmest best wishes,
    Richard. 
  • debbiedo49debbiedo49 Posts: 2,447Member Brian Blessed
    Welcome 


    I am a fibrowarrior!
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Wow guys! Thank you so much for your replies and lovely comments. You’ve no idea how much you’ve boosted my mood just now. Hugs to you all
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    Good Morning it’s Great To meet you this morning.

    Please please let me know if there’s anything that I can help/support you with????

    We have got lots of info & advice here which you might find very useful.

    Please please let me know if I can help/ support you with???
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @steve51 thank you so much for your lovely reply. It’s like being on a rollercoaster at the moment. My daughter’s situation means she’s all over the place, overly happy and excitable one minute, deep depression and anxiety the next. With me I just want the world to stop, I’m find myself crying at the slightest thing, I’m talking to myself, having the most awful dreams in the 2 to 4 hours sleep I manage to get in bed before pain means I have to get up. I have a heart condition called atrioventricular nodal reentrant tachycardia (AVNRT) which presents as a 200+ heartbeat, in part brought on by stress. I’ve had three full blown episodes in the last four days and constant ‘fluttering’ feelings in my chest which are a precursor to an episode. I’ve, thankfully, been able to use my self-help methods, e.g. the Valsalva manoeuvre, to stop the attacks but, if they don’t work within 20 minutes of onset, I have to call an ambulance and go to hospital. The whole DWP, Atos, PIP thing has just floored me on top of everything else. 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    Thats no Problem at all, it’s my Pleasure!!!!!!

    Are you having any help with your Pain????

    Do you take anything to help you at night????

    Sorry for all of the questions.

    Is there anything that we can help you with your “PIP”

    Thanks.
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @steve51, I take 600mg gabapentin twice a day, it’s supposed to be three but I’m trying not to take it. I was on high doses of morphine for over ten years but the pain management consultant wanted me to come off this as studies have proved that it can make pain worse and I couldn’t take a higher dose as it would have killed me. I’ve now been morphine/codeine free for just over a year and take 6mg buprenorphine each morning under the guidance of the local drug and alcohol service, I go there fortnightly for counselling sessions and to collect my script. The local Wellbeing mental health service can’t see me whilst I’m under this alternative care. I take mirtazapine and citalopram for depression and anxiety (highest doses of both) and a diuretic, indapamide, for oedema in both legs (which isn’t working!) I’m waiting on a procedure on my back - radio nerve ablation but not sure I want this as I’ve heard horror stories that people end up being worse off. My gp prescribed diazepam yesterday as I’m in such a state but that was reluctantly and an ibuprofen gel for the arthritis in my wrists. I also take paracetamol and ibuprofen in the morning in an effort to get going. Sorry for the long reply! Warmest best wishes, Gail 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi Tigermoth42

    Many thanks for the prompt reply.

    Please please don’t worry about the content in your reply’s.

    “That’s what I’m here for”

    Yes I’m also on high doses of my meds.

    Pregabiline.
    Oxcarbazipine.
    Amytriptaline.
    Amantidine.
    Transtec Patches.

    Plus I have had “major stomach surgery”

    How are things today?????
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi Steve, thanks for getting back to me and for letting me know about your meds etc. It’s so reassuring to chat with people that understand. I feel like I’m on a tightrope that’s about to break, it’s just horrible. I was on pregabalin but took myself off it as the weight gain was horrendous, now I’ve discovered the gabapentin does the same thing. You can’t win! I’m trying to keep my mind off things by watching daft films and trying to knit through the arthritis pain. I’ve got to at least try and stay as mobile in my joints as I can. In spite of how awful I feel, I’m not ready for the box yet! How’s your day going?
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    That’s no probs with the meds, yes “Pregabaline & Gabapentine”
    are from the same family (Opioid’s)

    Yes it’s great to talk with “like minded people” as we have all got the “t shirt’s”

    We all have to keep “fighting & never give in”

    How is your day going ?????
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    I’m watching Jurassic world at the mo @steve51 Couldn’t get much further away from reality, anything to keep my mind from going round and round in ever decreasing circles!! 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    Yes I’m going to have my daily dose off “horror movies”

    This “blows” the “pain” away!!!!!!!
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Yaay @steve51, a fellow horror fan! I just love them, although not zombies lol. And I agree wholeheartedly with you about blowing the pain away. Concentrating on stuff is hard for me for any length of time but short bursts of movies interspersed with good ghost stories and jigsaws seem to be holding back the demons. Btw, my last house was definitely haunted! 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    Yes just setting up a “media centre” in my house.

    This is great for my films /media.

    It’s just like a “home cinema”

    The only problem is I keep watching the same films!!!!

    It’s called “memory”

    Shame I can’t go to “pc world” 

    For more “ha ha ha”

    Sorry!!!’
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hahaha!! I’m with you there Steve! 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    “No Probs”

    Sorry but did you say that you are waiting for some Radiation Treatment ????

     I had some in 2005 on my brain/spinal cord.

    I would be very very happy in sharing my experience if that would be helpful!!!!!!!
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @steve51, I’m having radio nerve ablation, they’re going to sever the sciatic nerve in my back. It’s not the same as your radiation therapy I don’t think, that sounds tough Steve. Hope you enjoyed your movies  :)
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    I’m very very sorry I miss read your post.

    Yes it isn’t the same!!!!!!

    Do you want me to have a look for some info/help????

    Yes the movie’s are going fine mind you I keep watching the same ones!!

    My memory is completely shot due to my Stroke.

    How are things today?????

    Sorry for the mistake!!!!!
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Tigermoth42
    A propos of nothing else I'm going to try to insert a link here to a YouTube video of an Air Traffic Controller's after dinner speech. It is 45 minutes long and one of the funniest things I've ever heard, so I'm hoping that if you're not familiar with it already it may bring a little lightness to your day.
    Warmest best wishes,
    Richard
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @JennysDad and @steve51, hope this finds you both well, as best you can be guys.

    Steve, no worries, if you can find anything on this nerve ablation thing I’d be more than grateful, I’m not even sure I want it done as I have heard it’s not all it’s cracked up to be and people end up worse off in the long run. My head is all over the place atm and I’m struggling to function ‘normally’

    Richard, I’ll have a listen just now and thank you for thinking of me

    Hope you both have a peaceful rest of the day, hugs, Gail  
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    “Many Thanks”

    I’m on the “case” for you this afternoon if that “helps”

    Please please let me know if there’s anything else that I can help/support you with???

    Thanks.
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    I have managed to find/read some info for you about the treatment.

    This treatment look very interesting indeed.

    By the looks of things you will be fine honestly.

    Sorry about my first post to you.

    Do you want me to send you this info???  

    Thanks.
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @steve51, ooo yes please, can you do that on here? Thanks so much for looking for me  :)
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    That’s fine, anytime would be good honestly.

    I do hope that this works????

    http://dudleygroup.nhs.uk/leaflet/radiofrequency-ablation-of-nerves-facet-rhizolysis-v3/

    Please let me know if there’s any problems?????
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Brilliant @steve51 and thanks so much for finding it for me. I’ll have a gander & get back to you, Gail 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    No probs yes please let me know if there’s anything else that I can help you with???
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Good afternoon @steve51 and thank you so much for the info. It was really interesting, think I might change my mind and give it a go. Got nothing to lose hey! Hope you ok
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    That’s great news as they say “nothing ventured nothing gained “

    Can you please keep me updated with things?????

    If there is anything else that I can help/support you with!!!!!!!
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Good morning @steve51, I will defo keep you updated. I’m on the waiting list for this procedure but beginning to think I’ve been overlooked as the consultant told me last August that he’d carry it out. He did say it was quite a long list so who knows?! I’m quite happy to wait, but family are hassling me to call them and find out. My mental health probs mean I can just about cope with one thing at a time and this whole PIP thing has got me wound up like a tightly coiled spring, it’s all I can do to get by on a day to day basis at the mo without trying to sort out that as well. Sometimes I wish they’d just leave me alone, I’ll deal with it in my own good time. Hope you have a peaceful Sunday, Gail 
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @JennysDad, listened to the clip you sent me of the air traffic controller speech, it’s very funny! Thank you for sending it, it made me laugh out loud, something I haven’t been doing for a while now. Hope you’re having a relaxing Sunday, all best wishes, Gail 
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    That would be great !!!!!!

    Yes I know what you mean !!!!!

    I used to be able to spin many many plates at the same time !!!!!!

    Now I’m lucky if I can do one as well !!!!!!

    Have a great afternoon !!!!!!



  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi @Tigermoth42 and I am so very very glad to hear you enjoyed it. I have listened to it now several times and expect to do so many more.
    My Sunday looks okay thus far :) I hope yours is a peaceful and happy one.
    Warmest best wishes to you, always,
    Richard
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @JennysDad and @Steve51, hope you’re both enjoying the sunshine. Just got my copy of the assessors report and, whilst she got it right on some points there are glaring inconsistencies e.g. my ‘normal’ wrist movements, I don’t see how she came to that conclusion as I was wearing splints with metal bars which actively prevent me from moving. I got tripped up on the walking thing, she asked me how long it took me to walk a certain distance (I forget how far) and, in my flustered state, I said about 5 mins not really having any idea how long that was in terms of walking time with a rest of 3 mins but that’s not a true reflection of my walking ability. I’m all stressed out again, she said that washing my back doesn’t count for needing someone to wash my upper body, (I can’t even wash my hair & my husband washes my lower legs and feet as well) and that I can cook with an aid or appliance as I can chop veg but not potatoes and can’t stand for more than 5 mins, my husband does all the cooking as I often can’t hold a knife safely and only do ‘tv dinners’ in the microwave. She’s said I go out alone which I don’t, and can plan and follow a journey, which I can’t, as anxiety and panic isn’t covered by pip. I was doing ok these past few days and now I’m in a mess again. I just don’t know what to do, I haven’t heard back from my MR yet. 
  • CockneyRebelCockneyRebel Posts: 4,206Member, Community champion Brian Blessed
    Hi Tigermoth

    Don't panic
    Now you have the assessment report you know what descriptors need addressing.
    MR decision could take 6 weeks or could be tomorrow

    You are not the first, and you won't be the last to get tricked by the walking time / distance question, out of interest time yourself how long you can walk before stopping. Even if you had said just 1 minute you  would still miss out on the enhanced rate. Very slow walking is gauged as < 45 metres per minute
    Unless you are built different to me then your back is between your shoulders and your waist. Last time I looked extreme anxiety and panic constitutes psychological distress
    Anyway, there is not much you can do until you receive the result of your MR.

    You could start to prepare an appeal, but don't get all panicky about it, appeals do not have to be scary 

    There is plenty of info on here about the process and watch your inbox as well

    CR


    Be all you can be, make  every day count. Namaste
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    It’great to hear from you again, I’m so sorry to see your report is full of inconsistency’s but you are not alone believe me!!!!!

    It’s crazy as these people get paid a fortune!!!!!!

    I know that this doesn’t solve your current situation!!!!!

    Please please let me know if there’s anything that I can do to help/support you with this????

    Don’t get “Worried or Stressed” as this will only make things 100% worse 

    Please keep us up to date with things???

    We are all here for you 24/7 so “please please”
    don’t worry!!!!!
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @CockneyRebel and thanks so so much for your message, I thought I’d managed to get on top of my mental state over this but the report has just brought it all flooding back. I kinda guessed it would and almost didn’t read it. I just blurted out 5 mins to shut her up as she kept going on and on about it,  I kept saying I didn’t know. Some days are better than others, some days it’s all I can do to put one foot in front of the other, it’s like knives sticking in me, but I know I’ll be even worse if I don’t try and move. I’m guessing, on a good day, I can walk for a couple of minutes before stopping but it’s very slow and I have to stop frequently to regain balance as I stumble often. 

    I agree about the back, I thought it was my upper body too! I was shocked when I read that she doesn’t count extreme anxiety as a disability. 

    I’m a bit calmer after reading your reply, you’re right, I just need to take it day by day until I hear about the MR. Thanks again for your support x


  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @Steve51, thanks so much for getting back to me. I’m feeling a bit better after reading yours and cockneyrebels replies. I cried when I read them, it’s just so good to know there are lovely people out there who offer support and advice. I read recently about the vast sums of money that capita and Atos have been paid by the dwp, it is crazy. I have to wait for the MR letter and try and focus on each day as it comes, I hate getting into a state, it just drains me totally so I can’t function. Thank goodness for you guys x
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Tigermoth42. It is good to hear from you again and I'm sorry your news isn't better. I can only really endorse what others have said already.
    Here for you if there is anything I can do to help.
    Warmest best wishes,
    Richard
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    Don’t worry it’s my pleasure.

    This is why we are all here for.

    Please please keep me in mind when I are feeling a bit low or you need a “pick me up”

    Many Thanks.
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Pleased to meet you again. Just some words of comfort and try to help if I can with support.

    Please can I ask did you go to the assessment on your own or did you have support.

    One of the aspects of the assessment is try to find support. If you need assistance  In the sense some on with you on any appeal. This is hard and not easy, I had so many knock backs and non results. Understand all these assessments 

    My story is every 18 months or so for the past twenty years plus being reviewed and reassessed constantly. One assessor say am fit 18 months down the line next time assessor say am unfit. All these assessors got to the stage where and how to decide how to deal with it.

    In the belief how as a person could I deal with this. Mental effecting and physically.  Loss of benefit, signing on. Changes were ridiculous. Sometimes no benefit for a month

    All reports won on appeal.  Consulted charities and had support workers in my corner, plus now am on ESA support group.

    I would always recommend having some one like an advocate or a welfare support in your interviews at all time.

    I am not with mental health charity with no support at present. Have in the past gone on my own. Total failure get walked over, twisted words and make me look foolish.
    Now if it came again need either welfare rights or disability rights or some one similar in my corner. Because they do talk for you.

    Wish you all the best and hope you can get a solution to the result you justly deserve, may I add they always do the assessment make it wrong and mis information.

    Having some one to fight for you can be an advantage.

    Take care

    Always here to listen



  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @thespiceman and thank you so so much for your lovely message. I did have my husband with me and he spoke up a couple of times for me as I was struggling. Not that the assessor made a note of that, in fact the exact opposite. I was in tears for most of the interview and she did ask if I wanted to stop but she’s not noted that either. I’ve been in receipt of enhanced rate for over two years, enhanced dla for three years prior to that. Now it’s reduced to standard care only. Two letters have now gone in for my MR with pain consultant letters, X-ray report and mental health team letter (sorry if I’ve already put this, I’m so confused these days!). The assessor has lied in her illiterate report, that’s the only way I can put it, I haven’t outright accused her in my letters but focused on each point raised and pointed out where she was incorrect. Hopefully they’ll read them! Thank you so much for your kind words and support. I know I’m not alone in this but I just feel like I’ve been kicked in the teeth. 

    Hope you have a good evening, Gail x
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Definitely not alone, @Tigermoth42
    Here and listening,
    Richard @JennysDad
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Thank you for reply. Sorry what you are going through.

    All I can  say having your partner that was great. Having some one else works.

    Quick example some of my appeals with a friend or even assessments,  Failed not much as they were walking over me and him.

    First time had support worker. No talking from me . Well hardly any few questions. No exercises..  Assessor was put on the back foot.

    So passed.

    Just a suggestion.

    Take care always here to listen
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Good to hear some of your experiences @thespiceman, there’s so many horror stories that it’s great to hear that some do succeed. Thank you too @Jennysdad, I’m having a bad day today, just feeling so down that I wish I wasn’t here. Ankles and feet now so swollen that I can barely walk, got a docs appt on Wednesday for results of blood profile, I know the liver and kidney tests were on the high side, probably as a result of my meds (I hope!). And to think the assessor saw no evidence of swelling - blind bat!! Hugs to you both xxx
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hi @Tigermoth42
    and sorry to hear you're in a poor way at the moment. Some of these assessors should be given a different title, I think, but the language involved would not be welcomed on this site.
    I'm sure you're already aware of it - you seem to do it anyway - but if you use the @ID as in @JennysDad, @thespiceman and so forth we will always be notified of your post. We're here and listening.
    Very warmest best wishes to you, and hugs returned,
    Richard
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Sorry not well been looking to see how are you?..

    One of the main things I like about this forum. We as a community love and care and have concern for every body.

    As old fashioned gentleman from the days of manners and being courteous.

    May I wish you speedy recovery as a member of our community .

    Please can I add as a friend hope you feel better.

    Please can I add also it is always worth considering have another party to review any benefits or problems. You have a lot to cope with.

    Sometimes taking a step back looking what you have done. Having some else in your corner to advise and help.

    In the early days of these assessments. I forgot to add, memory. Ageing disgracefully. Anyway went to these assessment with friends and we all supported each other. My group of friends then. Way back in the early 1990's plus now it is all changed.

    Even me a season veteran of these assessments and the ordeal that have encountered. Understand always have some one else.

    Not telling you the assessments now have changed in such a way that the companies doing them are under pressure.  Due to Government reports and lots of press coverage.

    So are we as a community. ATOS and Capita have had their cards marked.  Now they are under scrutiny from every body and suddenly we as a community have more opportunities to give the assessors more awareness of our illness and our disabilities.   With independent support in your corner, they do not wish to be troubled by the outcome.  The assessors have to give clear, precise and well founded basis for failures.

    Knowing that some of the governments implementations might come in to force.

    All these years being treated badly and it is coming out. What the hell is going on. 

    Wish you well. Always remember we as a community are here to support you.

    Take care
  • WaylayWaylay Posts: 670Member Chatterbox
    @steve51 Pregabalin and Gabapentin are NOT opioids. They're anticonvulsants/antiepileptics.


  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Thank you so much @thespiceman and @JennysDad, your support helps so much, just knowing I’m not alone in this struggle. Having come off morphine after at least ten years of addiction, my pain levels are worse, in spite of the gabapentin I take which is supposed to help - huh, fat lot of good that’s doing! Other than the weight gain, which started with pregabalin, I’ve not noticed any difference. But hey ho....keep popping those pills! About the only thing that takes the very worst edge off is the buprenorphine I take as a substitute for morphine, under close scrutiny by the local drug and alcohol service and the pharmacy. Just dragging my sorry carcass around is enough without the additional stress the claim process adds! Hope this finds you both as well as you can be, much love and hugs xxx 
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Thank you for kind words much appreciated.

    Most important person is you right now. Just we are all here. Anytime. Take small steps.

    I am sure I speak on behalf of my friend  @JennysDad he would appreciate the kind words as well.

    Lovely to meet you always here to listen.

    Anytime

    The Spiceman
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @thespiceman @JennysDad and @steve51 hope you’re all ok guys. Just thought I’d share the latest c**p to be thrown at me. I called motability to check about keeping my car for the 26 weeks, as indicated on their website and in the motability magazine, to be told that it only applies to people transitioning from dla to pip who have their award withdrawn, not pip to pip as in my case. My car has to go back on the 4th June. I don’t think the dwp have any idea how badly their pathetically flawed assessments affect people. It’s one step forward and ten back, I can’t take much more of this nightmare. 
  • JennysDadJennysDad Posts: 2,308Member, Community champion Chatterbox
    Hello @Tigermoth42, and what on earth can I say? This is just so bl**dy horrible.
    I'm going to tag Cockney Rebel in again, as he was so helpful earlier, and our Benefits Advisory service too, in the hope that they may somehow be able to help.
    Wish I could be there to put an arm around you. 
    Love to you - useless as I know it is,
    Richard
    @JennysDad
    Tagging @CockneyRebel @BenefitsTrainingCo
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @JennysDad, thanks so much Richard for your supportive message, it means a lot. The metaphorical arm is much appreciated, it’s like life seems intent on kicking me further down that I already am. Struggling to survive as it is on ESA so zero chance of affording to buy and without my safe ‘box’ I’m virtually housebound. Hopefully I hear back re my MR before I lose the car and just trying to focus on what I do have - at least I’m still breathing so that’s positive!  :)
    Sending love back, Gail x
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Thanks for kind words.  Please can I ask has Motability confirmed that the car has to be returned.

    So sorry and wish I could be there to support you as a friend but I am clueless why you have hand back car.

    Got the information in front of me.  Have you spoken to Motability, clearly states.

    Motability Transitional Support is available for those who are no longer eligible to use the scheme following their assessment.

    Customers who are eligible for a package will be able to retain their car for six months including MR.

    Then lists the criteria too long and complex. Not to confuse you.

    This is contradiction of what you have been told. I assume you need to speak to welfare rights or disability UK. Because even myself reading it is not very clear. 

    Also regarding the car have you spoken to the dealership.

    Please can I add somethings amiss here. Not right need clarification from Motability in writing.

    Please can add I had this a letter informing me, saying. You have less than a year on your contract. You need to ring this number. You will not qualify for the scheme.

    Totally confused, rang up.  Then told you can apply for a car. Just a minute you said I can not apply because, have not been assessed PIP yet.

    Go ahead so I said OK but what happens if I get assessed while having car for less than six weeks or even less.  So the point is in my case. Still on old DLA waiting.  Eventually one day for to be assessed. Got new car, but if I fail assessments got no car. Only then will found out what is happening.

    Please sorry but this is not a rant just trying to make it clear, that the scheme something is wrong is there not.

    I wish and pray and hope some one here either can get advice and support.

    Regarding your situation.

    When it is this going to stop this confusing and misunderstanding. 

    For those who deserve and should have access to this scheme.  The whole idea is it not to give support and independence to those who need to live a life
    The soul destroying and unnecessary goal of hurting and harming our community Unjust, unfair and ever increasing plan of this Government to create more isolation for our community.

    My fears and anxieties grow more daily.  I could be one as well effected if I lose my car, trapped in my home.

    My heart goes to all who are constantly battling isolation and trying begin to cope with living a life.

    I give my support to all of our community the time who ever you are. 

    In the meantime hope I give words of comfort and say hope you can find the strength carry on 

    Always in my prayers and thoughts

    Take care

    Always here to listen.
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Oh @thespiceman I get where you’re coming from totally, we’re given info from one place that then contradicts info from another, it’s a damn nightmare. Wish I could be there too to give you more support other than just words. To answer your question re motability, I actually spoke to them this morning to ask if I could keep my car for the 26 weeks as it states on their website and also in the Motability magazine that came through the letterbox this morning.

    I’ve read it, my husband read it but apparently it’s only available if you’re still in receipt of dla and, to use their words, are transitioning onto pip from dla and joined the scheme in or before 2013.

    I was awarded pip after three years of higher rate dla and have been in receipt of pip for two and a half years, enhanced rate of both components. Because of the ridiculous assessment by Atos in which the assessor might just have well been writing about someone else, notwithstanding the grammatical errors and contradictory sentences, the dwp decided in their infinite wisdom that I’m only entitled to standard rate care, nothing for mobility so I’m only entitled to keep the car for 8 weeks.

    I would imagine that you, if you lose your mobility component at pip assessment, would also have to return your car after 8 weeks. I’m not 100% sure if I’m entitled to the £1000 and a third of the upfront payment we made when the car goes back, although it does seem from the literature that I would be as I joined the scheme in March 2013. It would appear that, if you join the scheme in 2014 and beyond, you’re not entitled to any payment to help you get a car privately. I’ve found nowhere where I can buy a reliable car for £1000 bearing in mind I’d need to pay insurance, servicing etc on top of that. I’m beyond upset, I just wish I could go to sleep and not wake up then this would all go away. The stress and uncertainty is killing me, they have no idea what they’re putting people through.

    I’d like to take this chance to send you a big hug across the airwaves and I send my love too. Thank you so much for just being here, Gail xx
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Thank you for reply. Please can I add I do feel for you and your partner. Struggling.

    Understand your situation. Still I would please say and add contact some one like Welfare rights or Disability UK. Consider anything they have said. Have you appealed always appeal

    Understand the stress and anxiety only person right now that is important is you..

    Amid all this confusion and may I add harm it is doing to you mentally.

    My concern is that.  Please seek anything help, support, guidance.

    My thoughts and prayers are with you and your partner.

    Always here to listen

    Take care

    @thespiceman



  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Thank you @thespiceman my lovely friend. Two hours sleep and I’m already overthinking everything again, it’s like a merry go round that won’t or can’t stop. However, the sun is shining and that always helps, I think I’ll take a good book into the garden and lose myself for a few hours. Sending you much love and hugs for just being you and being here, Gail xxx
  • ethanscottethanscott Posts: 5Member Listener
    Hi Richard, great to hear from you and I’m so glad I’ve found your community, I’m struggling with mental health and disability issues as well as my daughters mental health. It’s all rather draining but hey ho, onward and upward! You’re right, I do love flying and my husband has a private pilots licence. I did start my own journey down that route but mobility issues put paid to that as it did my love of driving fast sports cars and horse riding. I now watch horror movies, murder documentaries and knit and read. Rather boring and a tad morbid but better than stagnating! Looking forward to chatting too. 

    With my very best good wishes, Gail 
    This is so nice. You are still so positive. I have a lot to learn from you.
    Even I once had a dream of becoming a commercial pilot, but I did not clear the tests due to which I am now on my route to become a RC Airplane pilot.
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Good morning yes I am concerned and care about you  As a friend. You see what happens is.  This happens to me.  Understand you have a partner believe me having that is good to talk.  With him especially you need that rock.

    See what happens is you get this in your head like an ear worm. Round and Round.  Then effects sleep and mental state. Then appetite and anxiety believe me causes more problems.

    This is a merry go round in your head. My mind was so focused on this. I ended up hurting and effecting people in my support group. A mental health charity I once belonged to.

    Please can I also say if you can try to appeal if you have good. Consider talking to charities either mental or physical. Look on the web for anything in your area.

    To get support. Can be advantageous. As well others like Welfare Rights or Disability UK or even your MP.  They want to know your story.

    Had to do this, on and off for the all the time being disabled or mentally ill or even my addiction of course.

    That is another concern with anxiety comes well I reach for a drink to help. Then you are starting to drink.  More and more. Just a thought.

    Please take care and best wishes always here.

    @thespiceman
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Please can add when I used to drink because of anxiety. Managed to stave off.  A long time now but the fears and anxieties always there Trying here to cope and be positive for you.

    If I can help with anything or the community can please ask.

    Always here to listen

    @thespiceman
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @thespiceman, so well done to you for kicking the alcohol into touch, that’s amazing! I’ve had my own journey with morphine and codeine addiction, been off it now for a year (although I do take buprenorphine as a substitute) my pain is worse and my head is clearer which doesn’t help my mental state. I know how you feel re anxiety and fear, l’m unable to go out of the house on my own, I couldn’t tell you exactly what I think is going to happen but I actively avoid any social situations including family ones. I overthink things constantly, round and round in my head, it’s exhausting. You come across as very positive and you’re certainly being supportive, it’s so lovely to know there are people like you and others on here who genuinely care. Wishing you a peaceful day, Gail xx
  • thespicemanthespiceman Posts: 3,208Member, Community champion Brian Blessed
    Hello @Tigermoth42 Thank you for reply and kind words.

    Well done for you for keeping off. Am proud to call you my friend.  Always here to talk if wish to .

    Always we as a community try our best to help and advise. 

    Have care and concern.

    If you feel down or depressed am here as all of the community.

    Take care

    @thespiceman
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @ethanscott and thank you so much for your lovely message. I used to fly RC gliders, drive RC cars and boats back in the day and my boyfriend at the time owned a shop selling all things RC, in fact he still does! It’s great fun isn’t it! Fantastic way of meeting people too if you join a club. I’ve often thought about trying RC helicopters but they’re expensive to buy and quite hard to fly although I must say I’m tempted to get a drone! My other half isn’t flying real aircraft at the moment as he has copd and needs to get another medical done so maybe I’ll get him one for his next birthday, although he’s completely in love, as am I, with spitfires. There’s an airfield near us that offers flights in a twin seater spit’ so I’m saving up to send him on one of those. I think he’ll lose the plot big time in a good way if he gets the chance to go up in one :) What RC aircraft do you fly? Wishing you a lovely Friday, all the best, Gail x
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    My lovely friend @thespiceman, I absolutely love your messages, thank you so so much and I’m so glad I’ve found this community and you. It’s lovely to find out about people through this medium. Even if I can’t go out and socialise, I can still make friends online and you’re one of my dear ones. Much love, Gail x
  • Sam_ScopeSam_Scope Posts: 6,791Administrator Scope community team
    What a lovely post of support and care, things like this make me so proud to work on the online community :)
    Scope
    Senior online community officer
  • lindadeniselindadenise Posts: 253Member Chatterbox
    I hope you win your award back you and alot other people on here have been treated so badly by the assessors and dwp.
    Good luck.
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @Sam_Scope, hope you’re having a peaceful Friday. This is such a fabulous site, thank you for all your hard work to make this happen. I’ve gained so much strength from other members of the community, it’s just wonderful to be able to chat without fear. As I said to the lovely @thespiceman, I struggle in social situations really badly and rarely leave my house or garden, and then only to go to docs appointments or the local drug and alcohol place that is helping me with my addiction to morphine and codeine. This is a breath of fresh air in my life so thank you from the bottom of my heart to you and your colleagues for making it possible <3 I hope you all have a wonderful weekend, much love, Gail x
  • Sam_ScopeSam_Scope Posts: 6,791Administrator Scope community team
    Amazing  <3 Thank you!
    Scope
    Senior online community officer
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Oh @lindadenise thank you my lovely, I’ve got things crossed - in my head as I can’t physically do it :) sadly it’s a waiting game, my husband wrote two letters (one of 5 and the other 7 pages, just hoping they read them!) and I sent some supporting letters that I already had in my possession. It’s the not knowing that’s a killer, it’s like being on a horrible rollercoaster that won’t stop in spite of my screaming lol. I hope you’re getting some sunshine where you are and that you have a lovely weekend. Much love, Gail x
  • steve51steve51 Posts: 4,734Member, Community champion Chatterbox
    Hi @Tigermoth42

    I’m very very sorry that I haven’t got back to you sooner????

    Thing’s barmy this end my head hasn’t stopped spinning for some time now!!! 

    I am very sorry that I can’t be there to put my arms around you!!!!!!

    Things have gone crazy with “DLA & PIP”

    I could see the “Writing on the Wall” some years ago so I sent my “Motability Scooter” back & I got my DLA reinstated.

    Please please let me know if there’s anything that I can help/support you with ???

    I do hope that things get better for you from now on!!!!
  • ethanscottethanscott Posts: 5Member Listener
    edited May 2018
    Hi @ethanscott and thank you so much for your lovely message. I used to fly RC gliders, drive RC cars and boats back in the day and my boyfriend at the time owned a shop selling all things RC, in fact he still does! It’s great fun isn’t it! Fantastic way of meeting people too if you join a club. I’ve often thought about trying RC helicopters but they’re expensive to buy and quite hard to fly although I must say I’m tempted to get a drone! My other half isn’t flying real aircraft at the moment as he has copd and needs to get another medical done so maybe I’ll get him one for his next birthday, although he’s completely in love, as am I, with spitfires. There’s an airfield near us that offers flights in a twin seater spit’ so I’m saving up to send him on one of those. I think he’ll lose the plot big time in a good way if he gets the chance to go up in one :) What RC aircraft do you fly? Wishing you a lovely Friday, all the best, Gail x
    Ohh that is just lovely. I'm sure he is going to enjoy the surprise very much.
    I don't fly any RC Aircraft. It has just been one of my passions. I've never been able to afford one because of my financial situation. But I hope I get to fly one soon enough one fine day. I am literally collecting pennies and dimes so that I can get one.
    Which one do you fly? Also can you give any kind of advice on which one is a good place to begin?
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @ethanscott I haven’t flown an RC plane in years but used to fly gliders - just chuck them off a high hill :) and a powered plane called a Panic designed by my then boyfriend’s brother. I suggest having a look for a local model shop that sells RC stuff, they usually have a club attached to them for flying with like-minded people and will give you plenty of info and help. You can usually buy secondhand planes at quite reasonable prices too. Do let me know how you get on. 
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