The Bell Tolls

I love spring.  Even though I can’t wear short sleeves, I still feel the breezes tickle my skin.  I like gallivanting in the sunshine and listening to ear-splinteringly loud music as I tip my imaginary hat at the people who pass me by and wonder why the hell I’m tipping an imaginary hat.  

I gallop downstairs in the morning, or afternoon, it depends when I wake up, and check my post for cards, money and crack.  Instead, I find the renewal forms for Disability Living Allowance and a letter from Islington council illustrating that they are paying me the wrong amount of housing benefit and leaving me scuppered to the tune of £90 a week.  

It kind of kills the “spring has sprung” joie de vivre and puts you in a terrible mood all day.  I want to go and buy a pack of Malteasers but money woes mean that eating anything feels like swallowing coins.

Sorting out the housing benefit should be easy enough although they’ve left me absolutely buggered this month and £300 short of my rent.   All I need to do is go down there and shove my proof of benefits into their belligerent faces and in, oh, thirty years or so, it should be sorted out.  I am not panicking.  I have become an expert at this.

DLA, on the other hand, that I’m panicking about.  It seems to be one of those arbitrary benefits where the decision lies with the person marking your forms (and it is marking, rather than reading).  Mine doesn’t run out until October but in the meantime I have the rather disconcerting task of writing essays about my bad days.  Currently, I’m on middle rate care and lower rate mobility due to mentalism and the need for people to sometimes assist me with my mentalism.  If I drop a level, say to lower rate care, everything falls apart for me.  My housing, for one thing.  I’m under twenty five, so technically, I’m only entitled to the rate of one bedroom in shared accommodation (which is what they’re paying me now).   Because I live alone, and because of my DLA rates, I get a payment called the Severe Disability Premium, which renders the under twenty five rule null and void.  This means I can live alone in a one bedroom flat, which I do now.  Should the DWP decide I am not entitled to middle rate care (which I am, by the way), then it’s back to the paranoid hell of sharing and bedsits.  “How…not awful”, I hear you cry.  It very much is awful if you’re someone like me who not only suffers from crippling body anxiety and panic but also paranoid episodes of mania and depression where nothing feels sacred or private and I wonder if the person in the next room is listening to me with a glass.

I have a lot of help from the community mental health team.  I see my CPN every week and if they make a decision that jeopardises my mental stability, then she swoops in and says, “Hang on a minute”.  But I still hate filling in the sodding forms.  It’s a long exercise in, “Bloody hell, I am incapable” and rather demoralising.  Nobody likes being on benefits, despite the populist image that we all sit on our arses all day drinking cider and watching Jeremy Kyle.  It’s a horrible experience, having to rely on handouts to survive and feeling ashamed of yourself because you can’t work.  And because I live in London, my benefits don’t get me very far in the first place.  It’s a precarious existence, knowing that that help could be stopped at any moment.

I have my old CPNs forms for DLA here, which she filled out.  It includes my three official medical diagnosis, which are the mouthful- bipolar 1 disorder, rapid cycling with psychotic features, body dysmorphic disorder and bulimia.  Under duration, “10 years”.  Jesus.  And that was nearly two years ago.

The forms go into embarrassing but necessary detail about the things I sometimes need help with, such as not burning down my kitchen, getting dressed, eating, washing, tidying, being understood for the first few hours after waking up (I slur) and being outdoors during times of paranoia.  It’s all true but it is galling to read.

I had an appointment today where my CPN commented that my mood seems to have escalated again, which it probably has.  I talked to her about coming off medication and the fact that I feel almost brain damaged.   I really do, but she pointed out that it’s probably more down to my illness (it seems to be at least that repeated episodes erode your memory to the point of nothingness) than the medication.  It is intensely frustrating and embarrassing to be a twenty three year old woman with such appalling, appalling memory and who has trouble with her speech.  I can’t get my mind to work properly and sometimes I want to scream.

She pointed out that my medication doesn’t actually control my mood swings.  I seem to be, she says, treatment resistant.   Some people are, and I probably am because I went a long time without treatment and developed rapid cycling, and antidepressants only make me worse.  It is a source of constant annoyance to me. I still suffer from rapid-cycling moods.  The only thing that medication has helped me with is my sleep, and it caps the severity of the manias and therefore keeps me out of psychosis.  But, I guess, it’s better than nothing and has the least side effects for me, so we stick with it.

Rationally, I know that if I did come off my medication, I’d have to do it very slowly and pay intense attention to my moods.  The latter bothers me because part of the reason I want to come off my medication is because I’m sick of the intense attention I have to pay to my moods. I’ve come off the medication before suddenly and have become ill, in terms of paranoia and mania, extremely swiftly indeed, within days.  But, aha, would it pass or just get worse?  It’s a bit of a gamble.  It could all go disasterously wrong and I could find myself back in hospital.  Who knows.

My friend Jack came up to visit for a few days recently.  I have not been myself lately (it has been a traumatic two months), and have been wandering the wilderness for such a long time that my social skills seem to have deserted me, so I had no idea how to act around him, and act I did.   It takes me a little while to learn how to relax around people.  I spend so much of my time alone.  I ramble a lot but am often hypervigilant about what I say, and slip into a little analytical coma.   We were both in our own worlds, really, which aren’t the best conditions for visiting.  It was fun, though, and maybe the next time I see him I’ll feel more like myself again.

I’m trying to ease into sociability.  When someone visits you, it’s mandatory, you have to be social.  Otherwise, it’s your choice.  I’m going out tonight and tomorrow, and slowly beginning to reply to e-mails again.  

My body is returning to normal (despite- too much information- a week’s bleeding recently) so on Monday I’m going to join my local swimming pool to get in shape for the coming apocalypse.  My exhaustion and pregnancy weight gain means I have jellified.  I can be poured down drains, twisted round fingers.  I am soft, I will always be soft, but I want to be stronger.  I have always wanted my physicialty to reflect my mentality.  I’m very short, but not at all waiflike.  I don’t look like one of those vulnerable women so adored and protected.   You know, beautiful madness.   The fact that doctors and nurses think it’s so much more horrible for the mentally ill to be pretty and young.  Because I’m young, I’m supposed to be pretty and delicate, too.  And the tragedy is that illness and medication destroys it all.  How droll.

I’ve never wanted to look like that.  Because I have breasts and self harm scars and I’m a woman,  I have the appearance of someone you might be slightly afraid of.  I’ve always wanted to look like I could kick my way out of an inferno.   So I’m setting myself a little goal- to get physically stronger.  Swimming might not be the way to go, I should do training, but I hate the bloody gym and all its elastic people.  I feel lumpen and stupid there.   I used to love swimming but stopped going because of my scars and cuts.  Now they are fading.  So I can swim again.  It used to make me feel so free, but that was as a child, with floats and fun and games.  I used to sink to the bottom of the pool and kiss boys there.    I jumped off a diving board in a lake in New Jersey and was screamed at by my carers for flirting with boys while playing Marco Polo.  A chubby twelve year old, I was incorrigible.  I hope adulthood hasn’t squeezed the fun out of paddling in water.  

I used to wear swimming googles in the bath then submerge my toys underwater and pretend I was the daughter of a king, the king of the sea.  I’d let my head drift from side to side so it looked like seaweed, then be disturbed, and leap from the water, at the banging of the door, shivery, and shocked, clutching the Royal Family.

17 Responses

  1. That is an exceptionally well-written post.

    Have fun at the pool. Remember: no running, no diving, no bombing, no shouting….😉

  2. Good luck with the form filling and enjoy the swimming. Swimming is really good for you. Make the most of it. Xxx

  3. I’m glad you are going swimming and that you have a good CPN who advocates for you. Exercise usually makes me feel better, but the hardest part is getting out of the house to do it. I have problems with that.

  4. I don’t swim, but I’ve heard from those that do that it’s just as much fun when you’re older. That must explain the popularity of geriatric water aerobics.

  5. When I was a kid at the pool, I used to just amuse myself for hours by floating and sinking at the deep end. I’d float for a while, exhale and sink, stay under as long as I could, then kick myself back up to the surface and repeat the process.

    Now here I sit, as an adult, still oscillating in the deep end🙂

  6. Still a pleasure to read you🙂

    G.

  7. At least you’ve got some sort of team behind you. It’s all too easy to fall behind/off benefits because of “feelings of unworthiness”…

  8. That phrase ‘treatment resistant’ makes me laugh (an empty, apathetic sort of laugh), somehow it strikes me as laying the blame, if you will, at the door of the patient. They have that phrase for depression too – treatment resistant depression. If I were told my condition were thus I think I’d be thinking, “hang on a minute, it’s not that my illness is resisting your treatment, it’s that all the treatments are pretty unrefined”. Maybe one day there’ll be some lovely specific drugs that aren’t so hit and miss.

  9. Did you go swimming? If you did I hope you had fun, I love swimming. I was going three or four times a week last year, I need to start that up again!

    x x x x

  10. “DLA, on the other hand, that I’m panicking about. It seems to be one of those arbitrary benefits where the decision lies with the person marking your forms (and it is marking, rather than reading).”

    I know what you mean. I have my DLA appeal in a couple of weeks, and the irony of it is that it’s made me even more unwell mentally than I was before. I felt very demoralised when I received the terse letter from the DWP announcing that I had suddenly become capable of looking after myself entirely independently, and the lost appeal requests and the unhelpful phone calls have had me in tears on numerous occasions.

    It has taken me almost one year to arrange an appeal because of the way they kept losing my paperwork (and then denying that they had lost it). I had to get my MP involved. Then the paperwork miraculously turned up in their offices, and photocopies were sent to me as part of my appeal pack. I know they talk about fraud, but sometimes I think that their sole purpose is to discourage genuine claimants. If you’re ill and vulnerable, you really don’t have time for this. I’m lucky that my family and friends have been dealing with them for me.

  11. I understand the temptation to come off medication . Just a thought – were you throwing up regularly i.e actively bulimic when you tried lithium. Diet, the balance of salt and water in your system etc . . would have been compromised if this is the case, .Maybe that’s why you had such a nasty experience with it. Maybe lithium would work if you tried it again now that you are physically healthy. I can’t help feeling that you are being mis- managed- like they are missing something.

    By the way anxiety I have read also destroys memory. I have battled anxieties for years and recently got fantastic relief from a Kinesiology session. I am guessing it’s not your thing – just wanted to pass it on as I have been feeling so much better for six weeks now.

    Swimming is supposed to be one of the best forms of exercise , go for it .

  12. By the way Seaneen,

    Have you read about Dabrowski’s 5 overexcitabilities in gifted children. Very interesting read I thought.

  13. Hi dude, I haven’t read your blog for a couple of months so I see I’m way behind. So, instead, all I’m going to say is that you kissed people underwater? My god if you opened your mouth a smidgen in my local pool when I was a kid you’d come back up with plasters and syringes and all sorts hanging out of it. Bleuch! x

  14. Also, I’ve been taking up swimming lately. I can’t really swim, so I’m practising a bit. It’s all fun and games until it gets up my nose.

  15. […] Interesting: The Secret Life of a Manic Depressive is wrestling with the benefits system. I gallop downstairs in the morning, or afternoon, it depends when I wake up, and check my post for […]

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