Playing the System – part 2

Following up from my post about playing the system which wasn’t the post it was intended to be but it got a lot of support, so thank you. But now I shall give you the intended post, hopefully without going off on a tangent!

Apologies for rambling, being repetitive and sounding like a crazy person but, y’know, I am…

When I told people about the situation as it stands I got a lot of support and a lot of suggestions. People seem to know that system is rubbish and would rather see someone who needs help play the system than have to watch them suffer, I suppose that is something to be thankful for even though they are things that I could never do. Many people have suggested I just outright lie; exaggerate my condition, lay it on thick for doctors and lie on forms. That’s what the people who don’t need help do and they get to live cushy lives with no money worries. But I can’t do it. I just can’t bring myself to lie because that means I don’t deserve help. If I lie then I’m just as bad as all those benefit thieves and I don’t want that, I’m better than that whether the government can see it or not.

Another suggestions was to get pregnant! Now, much as I’d love to have a child, I couldn’t do that either. Firstly I wouldn’t be able to just go and sleep with a stranger, and secondly I wouldn’t want to bring a child into the world knowing it was just for cash. Of course, if I did have fewer morals and was happy to put myself about and bang anything with a pulse then I’d already be being put up in a nice flat with a big TV and living off the state. Fair? I think not.

I despair of a system that condones lying and punishes honesty. I wish I could stoop to their level but I can’t, I’m not that person and I don’t want to be. I’m honest and trustworthy and I damn well try my best at life so why does that mean I don’t deserve help?

I have good days sometimes, but as soon as I tell someone that they think that means I’m fine. By a “good day” I mean a day when I don’t want to throw myself in front of a truck. When they ask about my poor sleeping and I tell them that I still get up in the mornings they think that there’s no problem, they don’t ask whether I feel so tired that I hallucinate because that is irrelevant to them. I spent 4 hours in the garden yesterday and I felt good, I felt happy, and then I came crashing down as if I’d been on drugs or something. I paid for 4 hours of happiness with tears and sadness that hurt so much it was physical pain. 4 hours. FOUR.

How hard is it to understand mental health issues? Maybe it’s just because I’ve lived them that I understand how much they affect peoples lives. Sure, maybe we don’t hobble when we walk or need painkillers, but that doesn’t mean that these diseases aren’t serious. These diseases kill and if they understood the reality of MH problems we wouldn’t have to make the choice of whether to lie or suffer.

12 comments

  1. Lada MacManus

    I understand not wanting to lie and I commend you for it. I agree that the system in the UK, and to a lesser extent the US, is fubar.
    What I did was answer every question based on my worst day. I had to be brutally honest with myself about what those ‘worst’ days look like. It still felt like lying. I’m only at my worst 20%(?) of the time. It wasn’t lying because just those worst days are enough to keep me from being able to work or whatnot.

    Now, I know I’m not the best example since I have physical problems as well as mental health ones. That does give me an idea, has your sorry excuse for an immune system been investigated? Not that anyone wants more problems but more diagnoses might help.

    Mental health is so hard. I don’t fully understand it and I’ve dealt with it as well as living with people with serious mental health problems. It is so individual. For example someone I lived with had horrible hygiene as related to her depression and fear of falling water. She got disability benefits very quickly. Someone with strict rules about cleanliness and appearance is still ill but in a much less obvious way that could be misconstrued as a positive.

    1. PrincessL

      Thanks sweety.
      They’ve taken some blood tests and I’m being referred to haematology for clotting problems but other than that, nothing immune system related.
      I have fits and trouble breathing too but they’ve run tests on them and it’s not epilepsy or asthma so they gave up. It’s a fucking joke!

  2. Beckickles

    Hey.

    I know you’re in a bad place and I also know I’m not around enough for you at the moment. I’m so sorry.

    Please remember that there are those of us with children, with unexaggerated statements of even slightly litotical. I know mine was because, as Lada says, it’s hard to write about yourself, you feel like you’re lying. I was lucky in that my CMHN filled in my DLA forms in the end and I just had to pop my autograph on the form.

    I currently don’t receive any other benefits. I have DLA because I can’t really go out alone, I need someone with me and more often than not this doubles the cost or I rely on someone else’s petrol and I also have care elements which I’d rather not discuss publicly.

    Sure I’m making progress and I have been out on my own once this year. Not for long and only to the shop (and I was with Harry) but I still did it. But if I based all of my days on this it would be such a false reflection of how my life really is. I don’t feel bad for trying to go out alone when I know I normally can’t. I eventually want to get to the point when I can go out each day on my own and whilst I try, I need the support.

    I also didn’t want to receive benefits because I didn’t work, so instead of being unemployed I work from home, for myself. Not to earn big bucks (because I don’t) but so I’m doing something and keeping my brain active – not taking unnecessarily from the state. Some days are awful and I can’t work or whatever but I don’t beat myself up anymore because I know how hard I work and how many hours I put in. I earn my Child Tax Credits and Working Tax Credits just like anyone else does. OK, I’m not in the NHS anymore but not every job has to be a valuable service. I think the job I do now is or will be just as important.

    It’s about having faith in yourself, something that I don’t often have but I think there’s an amazing team that keeps me going out there.

    If I was able to leave this home I would probably receive Housing Benefit if I wanted/needed it. Which I probably would need. I do feel like a fraudster but when I think how ill I’ve been and I am, I’m really not at all.

    You’re right, it doesn’t cripple you. But it does have physical side effects. I’ve been out and been physically sick in the street whilst having a panic attack. I’ve also fainted and dropped to the floor screaming and kicking. I’ve also started talking to thin air (for everyone else), shouting and screaming at it. I’m often found crying on public transport. The majority of the time these things aren’t talked about with the illness that can’t be seen but sometimes we just need to look a little closer. It’s definitely not the same for everyone.

    I don’t know what to suggest. You should definitely be giving examples of your worst days because those are the days when you need the most help. Some days are easier than others for all of us but it’s the bad days that define the illness for the beast it can really be. Just like you my good days consist of maybe just crying once or twice (on the days when I can cry) and not wanting to die. I’m never really happy and I wouldn’t even go so far as to say that I’m contented.

    Let me know how you get on. It’s not a lie. It’s real. It’s hard and it’s happening to you, Livi. You need to get the help you deserve otherwise you will get worse. Honestly.

    Love you xxx

    1. Kerry

      I am so sorry you are having such a bad time off it. I don’t have any experience myself of mental illness I live with it though within family members and for things to be done we have always had to go on the worse days.
      We as a family are babies within the system only living with it for a year but it is hard. I remember sitting in the doctors with said person and them telling the doctor they thought they had this and this and the doctor was listening but had a really vacant look in his eyes. It wasn’t until said person described in perfect details that the doctors ears pricked up and he moved closer. Now I know that person didn’t think of it everyday but they had planned it and that I suppose was one of their worst days as everyone else has said. They did get their help but it is so hard. I really hope you get what you need but I do also think your immune system needs a serious look at xxx

      1. PrincessL

        It’s so awful that so many people are in the same boat or have experienced the same problems. It really does feel like unless we’re dead or dying then they just don’t care.

  3. Kerry

    Sorry that should say described in perfect details how to commit suicide! xxx

    1. Beckickles

      Livi the team I am with are called the Early Intervention Team. Here is the same service for your area: http://www.cwp.nhs.uk/OurServices/adult/earlyinterventioninpsychosis/Pages/default.aspx

      You can self refer to this team and they have an access point in Crewe. I think you should go to them and explain your psychotic symptoms, tell them you’ve not been getting help and you are getting to the point where you can’t cope at all anymore. Tell them about your suicidal thoughts. The address for the team is on the above link.

      Once you’re with the team they will write statements etc. for your benefits and be able to help you with other bits too such as finding a house. The team isn’t just made up of Mental Health Nurses there are also Specialist Consultants (who are a league above the rest), psychologists, Cognitive Behavioural Therapists and much much more. The treatment they have on offer is fantastic and they really work with you.

      Obviously I’m speaking of the ELHT version of this service, from experience, but it’s definitely worth a shot.

      ‘Referrals can be made to the early intervention team via telephone, e-mail, letter, and fax or through ‘Choose & Book’. Referrals can be accepted from any source including families and young people themselves.’

      I know you may talk yourself out of this Livi but I think you need to and must try to get help from this service. If you are experiencing psychosis then you really are entitled to help from this team. It’s a chance you shouldn’t give up.

      The Early Intervention Team
      Delamere Resource Centre
      Delamere Street
      Crewe
      CW1 2ER
      Tel: 01270 655235
      Fax: 01270 589824

      Let me know.

      Love you xx

  4. Beckickles

    I don’t know why but my second comment has just been sent for approval by a moderator. I hope it appears for you later If not I’ll catch up with you at some point.

    Becca x

    1. PrincessL

      Thank you for all your help sweety. You’ve been fantastic!

    2. Him Up North

      I’d be interested to know where and how the system “condones” lying. It may encourage it, and that’s a sad indictment, but condone? I fully appreciate how your experiences of fighting a system supposedly put there to protect you can easily sour your views. I can’t see it getting any better, not under this government. It’s really sad.

      I hope you get the help and support you need.

      (PS is help and support the same thing? Hmm, maybe lol)

      1. PrincessL

        An interesting comment HUN! Surely by encouraging lying that, in itself, condones it?

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