Why do they make me worry, get depressed and cause so much unhappiness

I am a 47 year old man, living on the south coast. I worked hard all my life, up until 10 tears ago.

In 2000 I had a bout of Bronchitis. This got worse and turned into full blown terrible pneumonia. I was coughing terribly, and feeling simply terrible.

I was totally shattered, I couldn't even walk 10 yards from my bed to the loo.

I was sent for a chest x-ray, and I was diagnosed with Tuberculosis. I was still coughing very badly.

I keep referring to coughing for a reason, and that reason being, during my TB I cracked several ribs from coughing. It was just unbearable pain, I was in tears for weeks on end, and could see no help.

The ribs couldn't mend properly due to the constant coughing from the TB and pneumonia, and they just got more and more painful. I went through a nasty drug therapy to combat my TB, and thankfully after about 6 months I started to get a little better.

However, I was still coughing, and was still suffering excruciating pain in the right intercostal ( Rib) area. I spent several months being given Epidurals to help combat the pain. I was also on a lot of morphine patches and lozenges.

After several months the Pain clinic consultant offered me the chance to simply undergo a procedure which would in effect burn the nerve endings and stop them from sending the pain signals back to my brain. This was a great option, and I grabbed it.

Unfortunately 1/2 way through the procedure the Surgeon pierced my lung, badly, causing a huge pneumo thorax. I was immediately sent to a different hospital, where they did some procedures and then drained/blew my lung back up. It took several weeks for my breathing to get a little better, and the pain in the ribs was even worse than ever.

So, the surgeon refused to do any further work on my pain, basically telling me I was to live with this pain all my life.

I fell into deep depression, wanted to kill myself, I simply couldn't bear living, I had no hope. I was blessed with some very good friends and my best friend, a learning disabled lady called Mandy , who I share a apartment with (No sexual love relationship, simply a symbioses of 2 people who get along and understand each other problems). Without Mandy and various benefits I would be dead, simple.

Then last year I nearly died again, I got double pneumonia in both lungs, and spent a month in hospital, 1 week in very dire straights and near death. I was then diagnosed with Pleurisy, which for me is very very regular, not weekly, almost daily I get severe pleuritic pain. I live in pain. I have been terribly unhappy, only for my friends to support me, and love me, and my benefits to help me not suffer from debt or worry.

My breathing is now totally ruined, I cant walk 10 yards, I have oxygen in the house. My car is the only bit of joy I have left, and Im going to lose this due to callous money saving people.

I was told to apply for various benefits. Incapacity benefit, Disabled Living Allowance, and Disabled mobility High rate. I didn't think I was disabled, I didn't want to beg, but more people told me I couldn't walk, I couldn't talk properly, Cant breath properly, I relied on Mandy to do every menial task, was in constant pain, on morphine liquid, chronically tired all day long.

I was / am slow release tablet, and slow release powders. Due to my mental state I am also on 2 forms of anti depressant, Amytriptaline and Fluoxitine.

I had so many bills, so much stuff I simply couldn't do, I couldn't afford to live, so was very very pleased to be told that I qualified for all 3 benefits.

It was a huge weight off my shoulders. My mental state started to improve, I felt more able to get out of bed for an hour a day, I slowly started to feel life was worth living. Then I found out I was eligible for the Motabilty scheme, and could get a mobility car. I applied, and got my little car, and this enabled me to go out for a short drive once a week, and to drive Mandy to the supermarket to buy our 2 sets of food. It was brilliant, I was slowly felling more like living.

This was 3 years ago, and after several scarey interviews where I faced losing my car or my benefits, to be told to stop worrying, I was in no danger of losing any of these safety nets.

Now Im told I will lose them all due to this PiP scheme.

I rely on my Doctor to be up to date with my illness , which is hard, as I never see my GP, I am on medication advised from specialist, I only see GP to titrate my medication and raise it a little. Also, nowadays, they wouldn't be certain of getting my on GP, even a locum could get the illness question from the DSS, and totally stop all my life again. I dont see specialist unless I have a bad period, Im NEVER going to be well again, ever.

I have COPD, with Constant pain from my ribs, along with Pleurisy

I have been told this will not ease, it can only get worse.

This PiP is crazy. I am ill for life, I am severely disabled, and in constant pain, and rely on my benefits.

But now Im told I have to rely on a face to face interview with NON Medical people. And the chance that a locum has written 'Have not seen Mr Clark for 6 mths, assume he is better now." OH Yes that does happen believe me!!!

I have started to regress again, my few friends have told me not to worry, but I see on the news every day real disabled people get their money stopped,whilst scammers and con men keep theirs. I full understand why these changes, but surely not to mentally punish legitimate claimants.

I don't beg, I don't expect free money, but I worked hard for 25 years, and paid my taxes. I don't look disabled, until you ask me to walk 10 yards. I rely on my support, mentally, physically and totally.

To be told I will lose the car at least for certain, and probably get put on jobseekers which I will lose after 6 months as I cant get out of my bed. I simply cant work, I want to I loved my work, I loved people, but now , due to my illnesses and medication, I am simply not able to even get out of the door. I know what this officialdom will do, and it will ruin my life.

Please, please, consider peoples minds, and their mental health, along with their ability to live a sensible way of life without worry and stress.

Realize that people like myself simply cannot get to an interview 30 miles away up a steep hill (Brighton being my nearest Non Medical reviewers) If I dont attend, I get stopped, I cant win here can I. Rely on GP who I dont see for 12 months, for my life.

Realize we wont get better, regardless how many times you make us jump through differing hoops, and realize how much pain and suffering lal this worry is having on people such as myself.

I dread the postman every day, delivering me a letter telling me my GP has been contacted and my benefits have all been stopped. Dreading that letter telling me DLA and Mobility allowance has been stopped, I must hand in my car and wait 6 months for a appeal.

18 Replies

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  • Catel I do hope things are not as bad as they seem. You've had a horrific time. Someone who knows about benefits will be on soon and hopefully cast a better light on things for you.

  • Hi Catel

    I am sorry to read you have had such a horrible time.

    The benefits system can be puzzling and frustrating at times - myself Carol and Biddy are benefit advsiers here on the helpline and we will be more than happy to talk you though any of the issues concerning you.

    Our telephone number is 03000 030 555.

    Cheers

    Jo

  • Hi Catel. Please, please take Jo up on her offer.

    Lynne x

  • I just wish there was a way for them to stop all the worry. Its not a stone cold certainty that folks like myself will get benefits stopped, there is a lot of scaremongering, and getting the truth and the reality from all the flak is hard. I could be worrying for no reason.

    But then I read the news, the various horror stories, the inability of Atos to listen and form a decent accepted diagnosis.

    Its the not knowing, the worry, we have been told that the PiP scheme and the new categories come into force from April 2013. They go on to state that everyone will have been reaccessed by 2016.

    You cant imagine how much stress and worry these next 3 to 4 years will make, waiting for that letter.

    I know it will come, and I have so little faith that I probably see the downside of this,

    Who knows , but again, thanks so much for the replies, and heres hoping Im worrying over nothing.

    Thank You.

  • Catel, I have enormous sympathy for you. You are crying out for help. The people who can help you best are the ones who help and advise with benefit claims. Please ring them on 03000 030 555 so that they can help you. Best wishes. Mary.

  • oh my, you poor soul, the help is there, please take it up.meanwhile try to be gentle with yourself. take care

  • Catel you have hit it on the head, there is so much conflicting information online, TV etc, and more often it is scary than supportive to people like ourselves. I was terrified a few months back when I had to convert from Incapacity to ESA, I passed with flying colours, and no doubt when it gets time to convert from DLA to PIP I will feel high levels of anxiety again. Until PIP comes in no one really knows how the process will work, it is easy for me to say don't worry, but try please not to get so low about it. Use the BLF Team for support. From what you have said I feel that you will probably be fine, when the time comes to go through the process I strongly advise you get in touch with all your medical care givers and make sure they understand exactly what they are required to do. If at all possible get them to write letters that you send with the forms, this gives you the opportunity to read them and make sure the letters confirm your daily difficulties. Also if filling forms is difficult I strongly suggest you get someone trained in completing these complex forms. I followed some of these tips and I believe they made a huge difference to my outcome with the ESA.

    Hugs Daxiemad

  • Catel I have enormous sympathy for you please phone Jo on the BLF so they can help guide you through the benefit maze system. They are the ones to help the best. Good advice from Daxiemad too and I am sure other people who know more than me will be along soon. Take care sent with a hug.

  • Hi Catel I am so sorry you are suffering so much. The benefits system is a real .......!

    I read up on PIP though and it might not be bad news - they are basically stopping the lower rate of dla leaving more money for those severely disabled. And while its scarey reading about people having their benefits stopped by Atos it doesn't happen to the vast majority.

    And did you know you can request a home visit from ATOS if you are unable to get there.

    Good luck and I hope things work out for you love.

    Bev xx

  • They are not stopping the lower rate at all. They are looking at each case to see how your illness/disability affects you in everyday life, it is no longer focused on what illness you have.

    Vangellis

  • I read that on the government website vangellis. Check out direct.gov.uk

    Beverley

  • Hello Catel

    I am so sorry you have been having such a rough time.

    I totally agree with Daxiemad and your other friends. I think many sick people are worrying in exactly the same way you are. I feel you need to visit your doctor and explain how this is affecting you, including the anxiety and depression. Also when you receive the 'brown envelope' as we all will, it would be useful get the help of an expert in benefits i.e. Welfare Rights, CAB or DIAL. I think you will feel much better if you take up Jo's invitation to telephone BLF. Jo is an expert in her own right and will help you. Number again is 03000 030 555.

    Good luck

    XXX

  • maybe let your MP know what i going on for you ? x best wishes

  • I understand what you are going through and you've got my sympathy, Catel. Worrying all the time is understandable, and leads to further anxiety and perhaps depression over time. I fully agree with what you're saying, and personally as a sufferer of C.O.P.D. and Cervical Spondylosis, with a touch of Raynaud's Syndrome and Osteoarthritis thrown in, my life has also been turned upside down recently. And though it's hard, you must attempt to do less worrying each and every day, for your health's sake. I hope you get the assistance which you need right now as it's out there waiting for you. Another link where you can read what benefits you're entitled to is here, welfarerights.net, which makes interesting and very informative reading.

    You have my sincerest wishes for a better future.

  • Thank you everyone. I have sent my MP , and Nick Clegg and Rt Hon David Cameron MP a copy of the post, though all forms of contact with the government seem to be in the form of a 1000 word comment, and unfortunately my post is somewhat larger, I do hope the precis I sent is enough.

    My post is hopefully highlighting the mental stress and strain on the disabled of all forms. Its the not knowing, the days and nights of losing sleep panicking, really really getting worried. And it is all just mind work, it may well never get as dark as I fear, though heck that does sound somewhat patetic

    Id love to ask people to help me, but until I know what is happening I wont waste peoples time quite yet. It may well be worrying over nothing.Im just afraid I dont have a very high regard to Atos, or various other assessors, and you never hear good stories, just the bad.

    At such a time as I find out my paranoia is justified I will ring you guys immediately, but I dont think honestly they can help me with hypothetical at the moment and certainly dont wish to waste peoples time.

    Thanks again, much appreciated.

  • You will not be wasting anyones time on the helpline.They are there to support you and a friendly advice line will do no harm and probably boost your confidence.I feel so sad about your plight.Keep in touch and remember be kind to yourself.

  • My good wishes are winging for a successful outcome to all of your worries are wining their way to you right now Catel :)

    I can only echo what others have recommended and that is to have a good chat with the people on the BLF Helpline, some good may come of it :)

    All the best

  • Hi Catel

    I don't think for one minute Jo, Carol or Biddy from BlF would think you were wasting their time. Jo has reached out to you and invited you to call and you may find it very helpful to talk it over with them. It is of course entirely your decision, but you have nothing to lose and may just find you feel more able to cope.

    Love XXX

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