Chronic Illness Love Connection

As I’ve posted before, finding someone special can be a lot harder when you’re sick or disabled. I’ll hopefully be writing another post shortly, but I love that Bryan points it out too.
We all deserve the same privileges that love and relationships can bring to our lives. Every one of us.

Lyme Inside - Living with Late Stage Lyme Disease


Since Valentines Day is coming up and I know there are a lot of chronic illness warriors who are single and looking, I thought I would try to help out. I’ve seen a few sites or groups dedicated to Lyme love or disabled dating …etc but they are not very active. I wish there was a legit, easy to use, free web site to help the chronically ill find love. Before I got sicker I was on my way to becoming a computer programmer, app developer for iDevices and web designer. Unfortunately I literally lost all of my memory from college and what I learned so I no longer know how to do computer programming.

I was thinking if anyone was single and looking and I get enough responses I could post a blog post dedicated to finding a love connection. Just contact me at my email address listed in…

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Despite. Because. And Everything Else.

image So I suppose I should start by telling you I’m in hospital. And it’s a psychiatric one at that. A neuropsychiatric unit, but still with the emphasis leaning heavily on the psychiatry bit. I came in for a regular outpatient appointment 5 weeks ago and haven’t been home since.

That appointment was a very heady mix of crying, relief and admittance that I needed help, as I wasn’t coping mentally with the physical aspects of my illness. It’s what a roadie would call ‘a fucking tough gig’. And it’s been going on a very long time for me, so I needed to ‘purge’. But I didn’t realise that once I’d started emptying the black refuse sack that was my addled mind, it would end up with me not being allowed home for my own safety.

The other people on my ward are unbelievably strong individuals dealing with everything from Parkinson’s to brain injury, from dementia to M.E. And also quite a few unspecific neurological problems that are difficult to get your head round. I’m probably one of those annoying bastards. Because somebody very dear to me had convinced me that maybe it was all depression and nothing more, the doctors and nurses here have had their work well and truly cut out for them, actually trying to make me realise I’m not a fraud for being here.

It’s been made very clear that places in this ward are like gold dust (there’s a waiting list, as there’s not many hospitals that combine neuro rehabilitation of sorts with the mental health side of things). So I’ve stopped feeling guilty for taking up a bed. That’s took about a month to realise. I told you I’m a stubborn bugger when I want to be.

I’ve had two and a half hour long psychology sessions detailing my entire medical and emotional history. Ways to realise that 90% of it was not my fault, but that maybe 10% is. That I did what most people would do in those circumstances. That we sometimes make bad choices, but they seem right at the time. That you can’t save someone else’s soul if they do not want to be saved. That if someone chooses alcohol and drugs over you, there’s fuck all you can do about it and it’s not your fault they didn’t choose you. It’s their choice. Like it was my choice to leave them, albeit a couple of years too late for my liking.

I’ve been put back on a med that I was on for years a long time ago that helped with the pain and the depression I’d developed in my mid twenties. Unfortunately, the fact that I’m now having a reaction to it doesn’t seem to bother the doctors much. When, on the second day, the bottom half of my legs turned blue/black and face went bright red, they told me to carry on with it anyway. Their reasoning is that my depression is so bad, they want to address that rather than the horrible pain and side effects I get. I kind of get it.But then I look at other patients here and realise half the time, the side effects are worse than their original disease or problem.

This drug used to allow me to function at about 75% of the ‘me’ that existed before illness. It took quite a while to get there. I have a period of a couple of years or so where my brain has almost completely blanked out what happened. A kind of nervous breakdown, I guess.Both figuratively and literally.

I felt numb on the meds for a long time. I think I probably just adapted to them and then parts of the real me started to break through again. I still feel I watch people from behind a pane of glass. Life is happening to other people, but not me. I know that part’s the depression, not the physical illness. When I was functioning well again, I didn’t really feel like that. I just felt different. But not completely cut off.

That ‘75% human’ is the statistic I chase now. I know I’ll never be the person I was before the illness kicked in, but I think it’s a reasonable goal to achieve, pain and mentally speaking and the doctors agree. They don’t want to hear you want to be fully well again anyway, because it’s just not realistic. If I wasn’t even 100% when I was working again, going to the gym, having a social and romantic life, then it sure as hell ain’t gonna happen now, at my lowest point.

I’ve had ‘ward rounds’ where I’ve sat nervously clutching my notepad, curled edges and green scribbles clearly visible to the semicircle of professionals that have spent 24 hours a day observing me. Dozens of eyes fixed on mine as I try gamely not to cry AGAIN, whilst I detail my thoughts, feelings, fears and general annoyance at my situation and what has brought me here.

The black clouds of doubt furrow my brow as I hope that they believe me, at least. That’s got better over the weeks. It’s that ‘fraud’ thing I’d had implanted in my mind for so long, that it’s taking a long time and therapy to finally dissipate. Although, being honest, the other day my ward round went so badly (the butting heads of ‘me versus doctor’) that I threw everything in my arms petulantly onto the floor of the corridor directly afterwards, such was my frustration. That sort of thing loses it’s power when you have to shamefully pick them up afterwards and hand in any ‘sharps’ to the nurses office.

Good things about this place:

The other patients in here are close to superhuman. They’ve had every shitty curveball that life could throw at them, yet they still have the best filthy sense of humour, ironic ways with words and general big heartedness that only comes with going through some Really Tough Shit. They are also the best friends to have on your side when you’re finding things too hard. If you have someone who’s had a tracheotomy, has constant debilitating muscular spasms, lost young members of their family and is wheelchair bound telling you to not to ‘suffer someone else’s bullshit, it’ll just keep you ill’, you tend to listen. And it’s the best advice you’ll ever hear.

I’ve been mistaken for a nurse and a doctor which has afforded me some interesting situations. I’ve been wrongly given a ‘swipe pass’ (which basically gets you through any door here), shown how to turn the alarms off by workmen and been asked for cigarettes and alcohol by confused patients. I am basically Randall McMurphy in a bobbed haircut.

All patients have their known mental quirks. For some it’s sneaking out for a cigarette in banned areas, falling asleep whilst halfway through their dinner or claiming to have millions of pounds stashed away they can’t get to. I have a bright pink paper ‘Liberty’ bag stuffed with weird and contraband foods, plus my own salt and pepper mill that finds it way around every table, because those little sachets of floor dust really don’t cover up the food quite as well as it could. Condiments, plus a bit of avacado or some coconut yoghurt, can make a bad meal pretty much ok.

Every single meal, apart from breakfast, has a dessert that is coated in a bright yellow runny emulsion, that I am reliably informed is custard.

Yesterday in Occupational Therapy, they let me cook my chocolate and beetroot brownies ( the only reason Hugh Fearnly Whatisface has any room in my heart AT ALL). 90% of the patients automatically doused their freshly cooked delicacy with that fucking stuff. *face palm* As a self confessed food snob, it made me cry a bit on the inside. (If it was Bird’s custard and not out of a cement- style paper sack, I’d be a little more reasonable.) Still, it went down well.

Everyone is super polite. Everybody says ‘hello’ to each other. Then there’s ‘thank you’, ALWAYS followed with a retort of ‘you’re welcome’. It’s like some kind of weird alternate universe where we’ve gone back to Edwardian times and I’m half expecting one of the nurses to doff their cap at me or cover a puddle with their cape. I’d love it if nurses still wore capes. Not the male ones, mind.

Some of the staff are wonderful and all for different reasons.

Our weekday lunch lady is a beautiful young Dutch woman, of Somali descent. Her almond eyes are always full of warmth and she acts like my mum with her sizeable food portions. If you ask for 2 spoonfuls of vegetables, she gives you 3, like a mother does with a child. She’s a feeder, just like me and that’s one of the reasons I love her.

We have a reading group every Wednesday, hosted by a friendly and intelligent woman and my favourite nurse. Said nurse is one that takes-no-bullshit, kind and doesn’t treat you with kid gloves like you’re a breakable curiosity, as some do. She also cycles 17 miles to work here, so I guess you could say she’s very dedicated. She’s tomboyish, cracks the odd risqué joke and knows when is a good time to leave you on your own.

There’s also a young guy on a placement, who was the first person to approach me after my horrible and petulant outburst of scattering my crappy stuff on a hallway floor. He has a firm voice, let’s you know he’s there as a sounding board, but will also spend an hour discussing the merits of white beetroot versus red and getting a meal for free in the ‘tapas’ that is Borough Market. He knows your boundaries and doesn’t push them. If I wasn’t in hospital , I think we’d be friends, although it’s hard to think of staff like that in here. There’s a level of professionalism that can’t be overstepped. The swinging photopasses that hang on bright blue ribbons around their necks make that clear.

Our head male nurse rides a motorcycle, wears Chelsea boots teamed with stripey t-shirts and looks a bit like Stewart Lee, but with silver hair. I’d be lying if I said that wasn’t a good thing. He does whistle constantly, but I’m willing to let that pass for having his physical presence. If I likened being in here to being stranded on a desert island, virtually bereft of loveliness, I wouldn’t be far wrong. I’m hardly a youngster, but the mean age of men here in my unit is around 60. So please forgive me saying that his visual attractiveness is helping my mental health in some very small way.

The grounds here are beautiful, just on the outskirts of London and Kent. There’s squirrels and deer everywhere. It’s a huge site and houses everyone from autistic children, brain injured adults, mother and baby units and teenage girls with eating disorders. There’s something both frightening and heartwarming seeing the girls on their daily walk round the grounds: nearly always in pairs, bundled up in thick woollen layers, their fragile limbs wrapped up. They gingerly walk like delicate foals, all shiny eyed and gossiping like all teenage girls do. I was bulimic in my late teens, so it’s pretty close to home and horrific seeing how far it can progress.

I could never do that again.

Maybe if I get through this, I’ll feel the same about now.

Ally Sheedy Has A Lot To Answer For And Other Teenage Lust Objects


Please don’t think I’m dissing The Sheedy.

Far from it: she was my first girl crush. At least, I THINK she was. Even though I was majorly disappointed she let that wet lettuce of a jock Emilio Estevez try and make her into a prom princess and wipe away all her goth hotness.

But I also fell in love with Winona Ryder around the same time. And Siouxsie Soux. Oh, and Claire Grogan from Altered Images when she was in ‘Gregory’s Girl’. And Kate Jackson from ‘Charlie’s Angels’. She was the tomboy, balls-out wisecracker with a swingy black bob. And looked bad-ass in her denim flares. I’m not sure which of these came first. And actually, it really doesn’t matter. Because they were all the bees knees in my young, susceptible teenage eyes.

Sensing a theme here? Slight outsider tendencies. Pale. Dark hair. A fondness for smudged eyeliner. Dodgy taste and usually crap luck with boys (yes, even Ms Jackson).

Identification was the key to my girl lusts: did I want to be them? Did I want to dress like them? Did I believe they felt pain and rejection like 14 year old self? Of course I did. Even if they were possibly rich as Croesus or at least getting fingered by Andrew McCarthy in their downtime.

Teenage female crushes are often part lust and part pinning your lack of self confidence onto an unobtainable person, with the objective being that their supreme excellence will somehow rub off onto your gawky, clumsy self. I often had trouble untangling my feelings as being either in the ‘I want them as my best friend’ camp or ‘they make my lady bits go tingly’ section.  It does NOT matter.

Look at the boys you fancy at that impressionable age: was there a tattoo, a beard, hulking great boat-lifting shoulders and a torso you could lick Nutella off of? Probably not. More likely they had doe eyes, a soft fringe, a liking for ice cream and soft, downy hair on their forearms. I majorly crushed on Adam Ant. He of the pigeon chest, frilly blouses and half of Boots makeup counter on his beautiful, high cheekboned face. Michael J.Fox and his tiny stature, girlish voice and freckles. Johnny Depp ( no other words needed) .The aforementioned Mr McCarthy had huge blue peepers, read poetry and tellingly, schtupped The Sheedy whilst she was wearing her pearl necklace. That’s not a euphemism. It Actually Happened.

They’re kind of interchangeable. Sexually non-threatening. It completely explains Justin Bieber’s popularity. He looks like some kind of doll made by scientists that want to show both male and female characteristics to kids in a safe and non-offensive manner.

It’s like our hormones are telling us girls: “You’re probably not entirely sure of your sexuality yet, so we’ll fuck you up a little bit more by making you like both sexes.” Or could that just be me?

But I don’t think so. If you’d put me in a room with a partially clothed Winona, kohl wildly applied to her lashes and a pair of artfully unlaced DM’s on her pretty feet, I would have had the same body and mind response to her as if it were Johnny. Although to be fair, that’s probably a crap example. Both are so fucking gorgeous, I challenge anyone to turn that golden pairing down. Seriously, I think I actually cried when they spit up.

You get a little bit older and your sexual self begins to sort itself out a bit. Sometimes, if your lucky, it’ll work itself out before your twenties. I THOUGHT mine was. I properly fancied boys. But then it got all confused again until I gave up trying to pigeonhole myself and just fancied who I fancied. Weirdly, there are still folk out there who actually care which gender you are rubbing genitals with. I mean, as long as you’re both adult and consenting, who’s business is it? It really fucks me off that this is still even ‘A Thing’ in this day and age. Religion has a LOT of shit to answer for.

So, in summary: Ally Sheedy. Would.

“It’s Either Very New Cheese Or Very Old Meat”




Recently, I was debating films with a friend and that hoary old ‘High Fidelity’ style chestnut reared its ugly head:

“What’s your all time top ten?”

Writing about your favourite films is always going to be bloody difficult: they change depending on your mood,  events that are going on in your life, whether you’ve drunk too much or if you’re desperately trying to impress someone you’ve had your eye on.  Mentioning you have a secret Steven Segal box set under your sofa or a secret longing to watch a Deuce Bigelow marathon, is rarely going to win the heart of a fair maiden.

Start writing a ‘Top Ten’ and you’ll get three films in, before hitting a panic over whether or not you should include embarrassing choices from teenage years or that one that reminds of you of an ex who broke your fragile heart.

Then there is nearly always that horrible yearning to throw in a foreign film you’ve never seen, but seems to win points with culturally aware mates. Usually nodding and saying that you “really appreciate the director’s honest approach” or “it really CAPTURED the era”, means you’ll probably just about get away with it. It helps if you have a beard and Norwegian fisherman’s bobble hat (men), or clogs and a Pashley (girls), to make your hipster choice look more convincing.

So, I’m not really going to list my all time top ten films here, because that will change with each passing hour. But I am going to tell you about some pretty much constants amongst my favourites, give or take whatever new Tom Hardy film comes out. You do realise that I’m now playing up this image you have of me that I’m Hardy obsessed,  don’t you? I’m not really that into him, honest. And since the court order, he won’t have anything to do with me anyway.

*takes down life sized cutout from bedroom wall*

The Servant (1963):

Joseph Losey’s alluring mix of class, servitude and sexual allure stars Dirk Bogarde and James Fox playing a socialite and his newly appointed butler set in 60’s London. From the very beginning it’s apparent that Tony (Fox) is very wealthy but incapable of looking after himself, in that upper class,  old money kind of way. Barrett (Bogarde) is employed as a general dogsbody but becomes indispensable to Tony, who soon realises that he needs him more than Barrett needs an employer.

Throw in a young Wendy Craig playing against type as Tony’s bitchy high maintenance girlfriend and Sarah Miles as a sexually confident honey trap,  and you have a dark, twisted story full of gay undercurrents and class war. Tony falls quickly into alcoholism,  fuelled by Barrett’s mind games. Each needs the other,  but hates themselves for it.

I loved Sarah Miles character particularly.  She is schoolgirl cute but knowing, seducing Tony on the kitchen table and Bogarde in the upstairs bedroom.  On the edge of the sexual revolution, she takes pleasure in her power over both men but is ultimately used by both in their disregard to get to each other.

All the way through, Tony’s upper class ways sit uneasily in the 60’s setting, the permissiveness and culturally changing times making his stiff Englishness seem more ridiculous with each passing snide comment from Barrett.

If you enjoy this, Losey’s equally famous ‘The Accident’ and ‘The Go Between’ are really worth catching too.

The Odd Couple (1968):

From dark and creepy to stupidly entertaining, The Odd Couple is the film I can probably quote the most. (Infuriating, I know):

“You’re the only man in the world with clenched hair”

“What’s in the sandwiches?” “It’s either very new cheese or very old meat”.

“They’re here…The dinner guests….I’ll go get the saw and cut the meatloaf.”

I could go on. But lucky for you, I won’t.

Felix (Jack Lemmon) and Oscar are the titular couple, thrown together through unfortunate circumstances.  Felix’s wife throws him out, leading to a botched suicide attempt that sees his back thrown out and his neck lock up. Divorcee Oscar steps in with the offer of a place to stay but their differences soon make it wildly clear that their relationship should be kept firmly in the bar. Practically the whole film is set in Oscar’s large but unkempt apartment.  There are various supporting roles that enrich the film, especially the two chirpy English sisters; ” The Pidgeon sisters, coo coo!”, but ultimately it is a tale of a mismatched bromance in the 60’s. Neither man’s much mentioned ex is featured in the film, it’s almost a boy’s own affair. One of my favourite scenes is when sports writer Oscar is at an important baseball game, when hausfrau Felix calls him to tell him they’re having meatloaf for dinner, just as the most important pitch of the game is made.

By turn endearing, sweet and saturated with sardonic New York humour, Felix and Oscar argue and bicker their way through the film like an old married Jewish couple. This is the kind of humour I love. It reminds me of my favourite joke ever (not in this film, by the way.)

A old Jewish lady is walking along a New York side street. Suddenly,  a man steps out in front of her, opening his trench coat to flash her. She stops, looks disapprovingly at him and says:

“You call that a lining?”

Let The Right One In (2008):

Well, we’re back to creepy again. But this time with added Swedish vampires.

I’ve sat through this film with people who have loved it or they’ve downright hated it, so it’s obviously a bit of a Marmite choice. If you tell people it’s a pre – teenage vampire love story set in 80’s Sweden, complete with pudding bowl haircuts and spontaneous combustion,  it may sound a tad clunky. Personally, I could watch this film on a loop for hours and find something new in it every time.

There’s no beautiful people in this tale of blood lust, the setting is endlessly snowy and it often seems emotionally blank. Young Oskar (Kare Hedebrand) lives in Stockholm with his mother, leading a uneventful and unhappy, bullied school life. A odd stranger moves into the apartment next door, smuggling in the palely beguiling Eli (Lina Leandersson), whom Oskar encounters outside in a cold playground. As detached as she is ethereal,  Eli soon begins to allow Oskar to befriend her whilst struggling to keep her blood lust secret. With the devoted old stranger dead through Eli’s demands on his tortured soul, Oskar becomes her new guardian and accomplice in killing to survive.

Some of the scenes are so grim they are almost funny: a blowsy woman set upon by a number of cats, reeling around around a living room, trying to throw them against a window in attempt to stop the attack. Oskar’s schoolboy tormentors are dealt with an a beautifully shot scene in a swimming pool where you never actually see the attack, just a bloody aftermath, akin to a scene from ‘Jaws’.

One of the best things for the film for me is the way it is shot: the pale, Polaroid colours and instinctive, meticulous staging. You could take anyone of its scenes and hang it on your wall. There is more than a whiff of William Eggleston about the cinematography.  And that, in my books, is No Bad Thing At All.

And, lastly:

Rushmore (1998):

This was Wes Anderson’s first properly big film, leading on from the slightly underwhelming ‘Bottle Rocket’, which I did like, but I disliked Owen Wilson’s character so much it made it difficult for me to get really into it.

There are lots of reasons to love Rushmore:

* Jason Schwartzman is at his least self knowing, playing young Max Fischer as a pompous, overly confident and fearless teenager on the very edge of his adult life. I don’t find it easy to like Schwartzman in films because I find him too smug. Maybe he’s just inhabiting his characters too well and it’s my fault? If it is, I apologise.

* Olivia Williams as teacher Miss Cross is the object of his schoolboy lust. Furiously smoking away the grief of her passed husband, she unwittingly becomes the love interest of practically every male in the film, and it’s not hard to see why.  Max almost kills himself in the process of desperately declaring his love. She also has to contend with two fellow suitors:

*Bill Murray, who plays a millionaire father of ignoramus twins at Max’s school. Detached from emotion and in a permanent haze of booze and smoke, he fights with Max for Miss Cross’s affections, although she wants neither. Both engage in a series of ridiculous fights and gestures to win her love.  Seriously,  Bill Murray every time. Did you have to ask?

* Luke Wilson is her third suitor and by far, the most attractive candidate in every sense of the word. Max manages to shoot him down with withering looks and catty asides:

“I like your nurse’s scrubs, guy”.

“These are O R scrubs”.

“O R they?”

* The ridiculous school play that Max takes over is a bizarre approximation of Apocalypse Now, but with awkward looking teenagers smearing charcoal across their cheeks and pretending to throw grenades. Likewise, the odd Serpico staging that Max precedes it with.

* It has one of the best soundtracks ever. You will never hear “Oo La La” by The Faces sound better or more poignantly placed. There is also a fair bit of Cat Stevens.

No! Wait! Come back!