My uni has falcons again!

My uni has falcons again!

Every year on top of NTU’s Newton building, a breeding pair of falcons make a fair crack at raising chicks in the heart of a busy city.

I love birds of prey, and I have to admit, I think the peregrine falcon is possibly the most spectacular predator of the sky. The sheer strength and speed in these tiny birds is amazing!

This pair have just had two of their eggs hatch, and I’ve spent the last twenty minutes squee’ing over seeing little feet sticking out from under the parent – I want to say it’s dad because he’s darker, but it’s hard to tell without the pair there.

I know, I know, work to do blahblahblah – but it’s nice to see that humans haven’t entirely ruined the world just yet.

Concentration

It’s amazing how exhausting concentrating on simple things is. I’ve got to watch how I walk, stand and sit at the moment because of my hip and the sheer amount of thought is frying my mind!!! 

I wish I could just velcro my hip in place like I do with my thumbs. It’d be easier if I’d not injured both the front and the back of my hip maybe? I’ll try to cripple myself less thoroughly next time.

Also, day off zapain = not any more coherent.

Drugs are fun and I love my GP!!!!

So, the diagnosis is no “hard damage” so my bones are all in one piece for the moment. No torn tendons and my back’s fine. Basically, I’ve pulled/sprained two tendons in my hip.

I walked in nervous as hell about seeing a new GP, since HMS is one of those invisible illnesses where doctors can be a bit over-cautious about diagnosis.

I went in, hobbling along, and explained that I’d busted my hip. I mentioned I was hypermobile, and that I’d done it kneeling in the garden. The doctor checked that I meant hypermobile (because my accent’s a bit thick for people to understand) and then spoke to me a bit about my history of injury because my medical records haven’t been forwarded yet. (Apparently a lot of them go missing for a month or two upon GP transferral – something to do with them not being sent direct, but through a government agency?) 

Anyway, the lovely doctor got me to take my trousers and shoes and socks off and lie on the bed. She even gave me a sheet to “cover my modesty” even though I was wearing underwear, which I thought was lovely. She prodded me all over, all up my back to check for damage to my spine, and checked both legs right from waist height right down to my toes. Then she even checked for temperature difference between my legs (as a sign of inflammation I suppose?) which nobody’s ever done before. Then she said the magic words…

“Ok, no major damage, but it’s clearly very painful. I want you to tell me what painkillers you usually get, since you know your body better than me.”

I was gob smacked. I looked at her with my jaw sagging open and kinda went “Errr… I’ve only ever used over the counter painkillers before.”

She looked at me incredulously and said “No tramadol, no diclofenac, no zapain?” and I shook my head. 

“I’ve always kinda had to deal with it. My old GP would only let suggest codeine if I was fainting from pain. I guess I’d like whatever’s the next up from that?”

I walked out with a prescription for 400mg Ibuprofen 3 times a day (which I bought over the counter to save money) and Zapain, four times a day which is 30mg codeine and 500mg paracetamol, but I can take two of those at once.

If I could have, I would have skipped out of the surgery. It’s so liberating to be given something that actually HELPS!

I took the 2 Zapain, and because my body’s not really used to high dose codeine I got really bad nausea about an hour after taking them. They are blissful though! It gave me the first whole afternoon with no pain in 6 years!! They made me very drowsy though, so I’m just taking one per dose for today, with full dose ibuprofen.

I’ve got to present my project to my supervisor and the scariest lecturer in the university on Tuesday, so I’ve emailed asking if I can have a chair, then I’ll not have to take the Zapain, and I can be lucid for the day!

I suppose the moral of this story is, somewhere there are medical professionals that will listen to you. Hands off this one though, she’s mine.

HMS is rare?!

I keep hearing people saying EDS and HMS are “rare conditions”. I dislike the term “rare” since it makes it sound like it affects a tiny number of people.

About 1 in 5000 people have some form of EDS (Yes, there are several of kinds) The population of the world is 6.9 BILLION (give or take a few) That means that there must be about ONE MILLION, FOUR HUNDRED THOUSAND people with forms of EDS in the world.

Let me say that again… one million, four hundred thousand. That’s equivalent to:

  • More than twice the population of Luxembourg,
  • Or if you’d prefer, about half of Wales.
  • Or, the same number of people in England, who are behind on their rent.
  • Or better yet, roughly the same size as the USA’s armed forces.

That is a lot of people. Sure, it’s not really common – it’s definitely not your every day hay-fever kinda thing. It’s not very likely you’ll meet someone with the same condition as you unless you arrange it to be so. Or in physiotherapy waiting rooms, or A+E.

That, however, doesn’t make it “rare”. There are a lot of people out there with this condition. In the UK, the number should be around 12-13000 people. That’s thousands of people who are struggling with this condition, being mis-diagnosed, accused of hypochondria because this condition is deemed “rare” and so isn’t taught about properly. I’m not proposing it gets put on the school curriculum, but maybe when doctors, physiotherapists and occupational therapists are training (which should be a career-long exercise anyway since medicine is constantly evolving) perhaps it’d be a wise idea to mention this condition, and it’s common problems – chillblains, poor circulation, pain, sprains, dislocations, dizziness, heartburn/acid reflux, excessive bruising. Then perhaps get them to test the stretchiness of patients’ skin, or look at scar tissue, or even test major joints for hypermobility. If anyone had done that to me, I’d have been diagnosed at 16, not at 22.

I do understand that most people going in to complain about a sprained ankle will indeed have a sprained ankle. If a patient comes in several times with the same sprained ankle (over several months), the doctors maybe should think outside the box.

The only reason people think this is rare is because so few people get properly diagnosed. I only got diagnosed because I kicked and screamed until someone listened. Even then it took a whole year before I got a decent physiotherapist, and another year after that until I had a decent occupational therapist.

As always, awareness is the key. I have to admit, before I was diagnosed, I knew nothing about HMS and EDS. I also knew nothing about fibro, CRPS, CFS but I’ve learned a little. And there’s hundreds more “rare” diseases I still know nothing about. There has to be a way to alert doctors to what’s out there.

In the age of computers, surely there’s some way Google can come up with a properly-designed properly-medical version of WebMD for Doctors, where they input your symptoms and it suggests the kinda things it could be? 

Like Minds (film)

Like Minds ( film)

I watched this because I’d slipped into a deep puddle of lack of motivation and was surfing through the iPlayer site for something I’d not seen before. I was immediately grabbed by Toni Collette, because I loved her in Velvet Goldmine (It’s one of my favourite films EVER!!!) and then I saw Eddie Redmayne, and was totally sold. Loved him in Les Mis.

Sometimes when I watch a film for the actors/actresses I’m a bit disappointed by the content of the film. Here, I’d use Troy as an example – Great cast, great idea, great costumes, and all of it makes a film where the only reason to watch it is to see sexy men with their kit off. I’m in the process of stalking the LotR cast members back through their careers. Not made much progress though, got a bit hung up on Dominic Monaghan’s latest buggy pursuit. Spiders and an enthusiastic Hobbit – what’s not to love?!

Anyway, back to Like Minds – I watched it in the middle of the day, while sorting through work and socks and stuff that’s got stuck down the side of my desk. All that got quickly abandoned in favour of watching two teenage boys fight it out over who could be the oddest. I don’t know much about psychology (sung to the tune of Sam Cooke) so I have no idea how realistic or pseudo-sciencey it is, but the characterisation of the boys is brilliant. You don’t get to know much about Sally, but that’s kinda a good thing. I love the way that the “interview/investigation” cuts back and forth across filmed flashbacks and current events. It reminds me a little of the Prestige, where if you don’t concentrate – you forget who’s alive and when! 

This is a really nicely put together film for a Friday afternoon – not an epic by far, and it didn’t surprise me, but sometimes having good characters is enough.

Annoying late Doctors appointments

So I busted my hip last Monday (15th), I waited ’til this Monday to bother calling for an appointment because the response I tend to get is “wait and see if it gets any worse”. I got an appointment for Friday, because as I’m a bit broken and not sleeping well, mornings effectively don’t exist for me.

Now, my hip’s crunching a bit less and hurting less.

Annoying huh? I should be glad that I’m fixed, but instead I’m dreading calling up on Thursday morning and going “Oh, no, I’m fixed now. I don’t need to come in anymore!” That’s probably very English of me. Anything to not make a fuss!

There’s something wrong with my hip.

I spent about half an hour kneeling digging in the garden a few days back. Since then my hip’s gone weird. It doesn’t hurt most of the time, only when I turn my leg at the hip joint, or when I try to go up steps. Unfortunately it’s my right leg, which is my strong one. I’m going to have to go to the doctors and get them to have a look I think. The outcome will be one of the following:

  • The doctor will tell me it’s bruised and tell me to go away.
  • The doctor will tell me it’s strained somehow and tell me to go away and take painkillers.
  • The doctor will tell me they’ve got no idea what’s wrong, and tell me to go away.
  • The doctor will refer me for X-ray, and maybe then physio.
  • The doctor will be awesome and tell me what’s wrong and what I have to do without sending me elsewhere, or putting me on a waiting list.

This will be my first appointment with my new GP since the fiasco of the last one. (Who I won’t name and shame, but have blasted in EVERY satisfaction survey I’ve got for the last 4 years, and reported to the PCT).

  • He told me that the key to dealing with my anxiety disorder was to simply “not be stressed”. Genius eh? I really wish I’d thought of that!! 
  • He told me off for being concerned when my boyfriend got really sick at the same time as having an inguinal hernia, saying I was “causing strife for the practice”. I was right though, my man had gastroenteritis at the same time as the hernia and it was causing a LOT of pain.
  • He told me that I didn’t need to wear my OT thumb supports, and told me that my repeated sprains in my left ankle were due to me not being careful enough.
  • He shouted at me for having a panic attack when they tried to take my blood, even though it’s a normal response when someone spends half an hour flicking your arms trying to raise a vein and wasting a lot of needles. I felt like a damned pin cushion by the end.
  • He told me that he wouldn’t write any more medical notes about my “chronic fibromyalgia and hypermobility syndrome” because I should just use the old ones. I only asked for 2 letters about my joints in the entire time I was there, so that’s one every 2 years.
  • All this time, I was requesting wherever possible to see locums or student doctors – not ideal when you’ve got a complex, long-standing condition. (That’s how my HMS got diagnosed!)

In the end, I was talking to my wonderful OT about the thumb supports because I needed replacements, and I was amazed when she said something along the lines of “Well, you know your body better than I do.” I nearly fainted from shock and mumbled “Wish my GP would agree.” She asked me what I meant, and I described what was happening at the surgery. She told me to go get a new GP, and so I did! It never crossed my mind to challenge the authority of my doctors before.

Now I’m doing my best to not let medical professionals bullshit me, for want of a better word. I’ve studied chemistry to a high level, and thanks to living with a physicist I’ve become pretty good at that too. I’ve learned how to research, and given enough time I can puzzle my way through most things science presents at me. (Except circular motion equations, can’t do those!)

If I explain that I understand science to doctors, I hope maybe they won’t use their stupid analogies any more, which actually tell you precisely nothing.

I’ll go in, describe what’s happening and hope for the best. Maybe I’ll actually get some sensible advice!

And Another Thing, by Eoin Colfer (Only the Radio Series)

For those of you who don’t know, this is the sixth “phase” in the Hitchhikers “trilogy” by Douglas Adams. Adams died very young, of a heart attack I believe, and he left the work unfinished, or at least with a lot of loose strings. I’ve not read the book, I have listened to the radio series.

Eoin Colfer is a very good writer, and pulled on those strings to “tidy up” the endings.

Stephen Mangan voices the radio adaptation, and he is also very good.

Peter Serafinowicz, who is also very talented, plays the voice of the guide.

The shame is, three good things combined makes something that isn’t quite as great as the original. The charm of the original Hitchhikers series was the “To hell with the budget” attitude given to the production. It had a full cast, the most decadent special effects ever heard on radio (which even stand up pretty well against modern productions), and the cast seemed to have an awesome time making it. This new addition has Stephen Mangan voicing all the characters. He’s a talented voice actor, but it’s just not really enough.

In my opinion, the story seems a bit disjointed (and not in a cool Douglas Adams-y kinda way, more in a written on post-its and scattered across the carpet kinda way) and the production seems, well, cheap. As far as Hitchhikers was concerned, Adams always wanted the best. He wanted a “Peter Jones-y” voice for the book. The BBC said that THE Peter Jones was too expensive, and spent a long time looking for a sound-a-like. And guess what Douglas Adams ended up with? That’s right! Peter Jones!

Yes, I know they will have wanted to do it differently, because it isn’t written by Adams, and it is modern, and all that stuff. But when it comes down to it, it is a continuation with the same characters, the same ideas and the same settings. You can’t lift those out and change the format any more than Tim Burton could have directed the final Harry Potter film! (Although, that could be bloody AWESOME!) With something that established, when you mess with it, it could (or probably will) end up an absolute mess.

I really think that the loss of Adams at quite a young age (only 49!) was dreadful. He was a fantastic writer, and I’d even describe him as an artist. He created several worlds across a variety of media formats, which I think makes him more than simply a writer.

This attempt to re-mould his ideas seems cheap and tacky, and I’m hugely disappointed that it doesn’t do more to honour Adams’ memory. I’m glad that, after all this disappointment, I have my experience with the Hitchhikers Live! tour to turn back on. That was a truly awesome night, put together by the original cast, with a decent amount of proper humour and a nice tip of the hat to Douglas too.

The sad thing is, if this new series was a stand-alone I’d probably be heralding it as a triumph and saying how much I loved it, but I guess it’s that “tricky sequel problem”. 

DLA benefits changes

DLA benefits changes

I do not currently claim DLA, or in fact any kind of benefits. I know a lot of people who do though. 

Read this summary by the BBC (The DLA bit is about half way down) and the summary basically says “Uhh, we don’t know what the changes will do….” It seems unfair to me to take what is widely regarded as the most vulnerable section of society and screw them over. Some of us are lucky enough to be able to work, many people who are unable to work would dearly love to be “contributing members of society”.

Yes, those of us who can work, should be working. Those of us who can’t work need to be supported. If we deprive these people of money, then they can’t afford food, care and medicines. These people will become sicker, more isolated, and less useful for society.

The benefit re-jig is generally shambolic in my mind. I reckon significant investment in reducing benefit fraud and tax evasion would be the best way of recouping money.