Browsing Category | From The Vaults

Head Squirrels and Hypermobility (2012)

Another ‘one from the vaults’ – sort of – this week. I have been stricken with migraines (fun) this weekend and am having problems staring at the computer screen. So I’ve gone back to my old blog for this week, with a post I wrote about my HMS and the London Olympics. It has been a little edited for sense/length but otherwise remains intact!


 

Head squirrels are invisible creatures that gnaw on your niggly brain thoughts at night and make it hard for you to sleep. Tonight I have appear to have a veritable infestation of them, so I decided to give up on trying to sleep and try to do something else for a little while so that the head squirrels get bored and go and nibble on someone else. The best way to make them bored, I decided, was to try to get all the brain thoughts out of my head and onto a page and then maybe there’ll be no niggly brain thoughts circulating, and thus nothing to attract the brain squirrels.

A number of events have precipitated the niggly brain thoughts of this evening are, mainly,  some broken bones, lack of exercise, the opening ceremony of the Olympics & the Paralympics themselves. My thoughts are still niggly, and somewhat chewed-upon by the afore-mentioned sneaky fluffy rodents of the mind, so please bear with me if this comes out jumbled or even completely nonsensical.

I fractured my hand in February (playing roller derby) and 8 weeks later in April, a week after coming back to practice, I fractured my rib (playing roller derby) which put me out for another 10 weeks. During this time I ate ALL OF THE FOOD and did no gym. This meant that not only did I put on a whole bunch of weight, but I also started to experience more pain and difficulties with my joints & muscles.

I am not sure if I’ve mentioned this much – it’s not something I talk about a lot because I am never really sure how to. I always worry that I sound like I am making excuses, and it’s a complicated thing to explain. I have a condition called HMS which stands for Hypermobility Syndrome. It’s not the same thing as being hypermobile (or double jointed, as it’s more commonly known.) If you’re hypermobile, you have (for whatever reason) very flexible joints. If you have Hypermobility Syndrome, that flexibility has started to cause pain or problems in your joints, muscles and/or internal organs. It’s not very useful as a descriptor, to be honest. You could fill 10 football pitches with HMS sufferers and all of them could have completely different problems, symptoms, difficulties and variations on how it affects them. Some people have occasional pain and twinges, managed by painkillers or careful exercise. Other people can barely move, walk or sit and stand without serious dislocations. It’s a condition as varied as the British weather.

When I talk about what hurts, or what I’ve injured, people often go “oh what is it THIS time? You’re always doing something to yourself”. Well, the vast majority of the time, my problems are related to HMS. For me, personally, my affected areas are:

– My shoulder-blades. They can slide in an out and hurt a lot if I don’t keep the muscles around them strong.
– My hands, wrists & carpal tunnel. I have difficulty gripping things, I drop things a lot because I lose grip. I can’t place my hand flat on the floor or rest my bodyweight on my hands. On very bad days, I can’t hold a mouse, or type, or hold a toothbrush or hairdryer. Thankfully it’s been a while since I’ve had a day as bad as that.
– My hips. My hips & pelvis sit slightly in the wrong position, so it can get painful if I walk much, and if I get very tired my posture goes and I start walking funny.
– My shins. The fascia between my shin bone and shin muscle is so completely damaged I have permanent shin splints. This means I can’t run or jump much and sometimes the muscle gets stuck on the bone which hurts like a mofo, and I have to have a horrible painful massage to get it unstuck.
– My ankles & feet. This is probably the one that gives me most trouble! MY ankles are very weak & over mobile, they are really unstable and give way easily. They roll in when I walk. My feet have no instep and I overpronate when I walk to the extend the outside of my feet don’t touch the floor. I have bunions on both feet over the toejoint. The ball of my foot and the large toe joint have fused in a weird way which means my toes don’t bend backwards – I can’t stand on tiptoe. This means when I walk my ankles twist round.

All of my joints are prone to “subluxing”, which means they don’t stay in the socket well, and can slip out. When I walk long distances, even in my NHS orthotics, the walking action can make my big toes sublux, which is incredibly painful. I can’t wear heeled shoes for more than about an hour, even low heels, before the toes start to sublux.

What has happened is that my muscles are all working overtime to stabilise the joints; but they aren’t working in the direction or in the way that muscles are strictly meant to. This means that in addition to my joints being a dislocation risk some of my muscles are overdeveloped, and thus weak and prone to injury. My muscles are tense all the time, and I find it hard to relax them.

Many HMS sufferers (and I am no exception here) also have problems with migraines, IBS and proprioception (spatial awareness). That last one means I walk into door frames a lot and often have weird shaped bruises on my shoulders. In addition, because HMS sufferers muscles are all working so hard all the time, we can get fatigued more easily.

It’s a condition not an illness. There’s not a cure and due to its very nature it is degenerative, getting worse as you get older, unless you really look after yourself.

So, in short; I injure easily, am in pain most of the time, and if I eat ALL OF THE FOOD and don’t exercise safely & regularly, everything goes to shit.

Ironically, if I hadn’t started to try to get fit in the first place, I might not have discovered all of this. In around 2006 I went on a health kick. I started going to the gym and cycling loads, something I’d never really done before. After a few months of yoga & street dance I started to get really bad pain in my hands and legs. This started years of tests & diagnoses and re-diagnoses, via RSI to arthritis through ME/CFS & fibromyalgia, finally arriving at the not-very-descriptive “HMS”.

Suddenly so much clicked into place. The difficulties I had at school with any sport that involved holding things (tennis) or running (long distance). My hatred and fear of “long family walks”. I just assumed as a child that everyone was in as much pain as I was, just that I was the only one complaining about it, and I was therefore rubbish. When the diagnosis finally came it was a revelation. I actually cried at an early physiotherapy appointment at the realisation that I’d been living with this pain all the time and it *ISN’T* that everyone else feels like this all the time and doesn’t complain, and I am NOT rubbish.

Fast forward to July 2012. I was in the opening ceremony for the Olympics. The Danny Boyle one, which was pretty much universally acclaimed as pretty bloody good. I was in the NHS section, as a roller skating nurse. You never actually saw me, but I was there. The rehearsals and the skates they gave us were pretty hard on my feet – I spent most of the rehearsals in pain but just trying to bear it as it was a once in a lifetime opportunity. I was icing my feet when I got home as sometimes the balls of my feet were so swollen I could barely get my shoes on. I was fine until we got to rehearsing in the stadium for real, when we found our cast holding area was a mile and a half walk away. Not wanting to make a fuss (at first) I tried to do the walk. However after doing it twice, and spending 5 hours in the skates, I was in agony, and was worried I wouldn’t be able to walk back to the station. I cried at the cast co-ordinator, and explained about my subluxy toes and foot & ankle problems. He was very understanding, and arranged to add me to the list of people who could use the little transport carts that could take people with mobility issues between the stadium and the cast area.

This helped a great deal – but felt like a fraud. There were other people who I thought were much more in need than me. And I was a SKATER. What sort of a fraud was I, wearing skates and skating around, but unable to walk a couple of miles? I play roller derby for goodness sake. I can walk (albeit not far!) I can sit and stand. I can go to the gym. Ok, I can’t wear heels or do plyo or play squash, but loads of people every day don’t do those things. What business do I have saying I am disabled when I can do most things that I need to do to get by?

And there’s the rub; the word disabled. The baggage it carries. It’s a label. An albatross. A dis-ability. It’s something I’ve rejected ever since I was first diagnosed. As my condition gets worse though (and despite getting new orthotics which are even more corrective than my old ones, my feet in particular insist on getting worse) it’s something I’ve had to face more and more lately. I still can’t bring myself to tick that box “do you consider yourself to have a disability?” when filling in forms. It feels like too big a thing to say yes to.

Compared to other people I know of with HMS, I am actually bloody lucky to be able to do as much as I can, and so while I can do all of the things, I will keep doing all of the things. My feet/shins could stay as they are for years, or they could deteriorate. I don’t know. But then a perfectly healthy person could be hit by a bus tomorrow. You just don’t know what will happen to you.

I can’t give you an answer to that “do you consider yourself to have a disability” box. It’s not something I’ve let myself think about, and it wasn’t until the opening ceremony that I realised how there really are some every day normal things – like walking a mile, or holding on when standing on the tube – that I really struggle to so. If I am honest, the answer to the “do you consider yourself to have a disability” question is “sometimes”.

I have been watching the Paralympics with awe. The Olympics were impressive, sure. Watching anyone compete in an event they’ve been training for for 4 years, being in their peak condition, achieving amazing things – it’s been inspirational. But the Paralympics somehow mean something else to me. These are all people that have technically ticked that disability box. And they’ve all had to go through rigorous testing for the classification system that determines exactly how “impaired” they are in their event. Some of them can’t hold a toothbrush, or use a tube without an elevator. But, just as with Ennis, Bolt et al, they are achieving incredible things. Cockroft, Simmonds, Weir; these are people in top physical condition, who are able in ways that many able bodied people aren’t. And they all, technically, tick that box. Do they consider themselves disabled? Perhaps their answer is also “sometimes”.


 

I was reminded of this post today by a conversation with lovely flatmate, who is experiencing very similar symptoms to mine. It made me realise how much I have started to accept my difficulties over the last two years, and accept that they are irrevocably a part of me which I need to work with, not fight against. So many things have become second nature which reduces the daily pain I am in, whereas in the earlier days I kept trying to do things I probably shouldn’t have done. I’ve adapted the way I live on a day to day basis which has resulted in me finding it easier to accept that ‘dis’ label, whilst also being much less affected by it. Perhaps this is all part of my journey this year – becoming a more ‘whole being’ and not a collection of – slightly broken – parts.

Women do not necessarily want your attention (2007)

A day late and a bit of a change this week as I am on holiday (sort of). Mother RDP is visiting from the other side of the world for the first time in 6 years and requires entertaining (which is actually fairly easy. 1 – provide Playstation game. 2 – add red wine. But she prefers cooperative games and saying “sorry, I can’t play Lego Pirates of the Caribbean any more, I  have to write my blog” isn’t worth the death stare). So for this week I am providing a post from my old blog – one from 2007 before I’d self identified as a feminist.

This was the first time I really wrote about street harassment, the first time I really let rip with my opinions online and it was both freeing and terrifying. The post generated many comments – positive, negative, educational, insightful and creepy, and it was my first experience of the “not all men” derailing rollercoaster.

I look back now and it’s not perfect, it’s not quite how I’d put things now, but it’s my first real piece of “internet writing” and I present it for you here, unedited, as one from the vaults:

 


 

Dear To Men,
I know this is a subject which has been brought to your attention numerous times, by women you know, strangers in the street, documentaries, newspapers and various other forms. But you are clearly not getting it.Women, believe it or not, do not necessarily want your attention.I know this may come as a shock to you. It certainly seemed to come as a shock to the four men who – separately – approached me last night, after half 10pm, while I was unlocking my bike outside Sainsbury’s. They all seemed very surprised indeed that a young, lone, small blonde woman would be undesirous of the attentions of a lone man at night. One was so surprised, in fact, that I rebuffed his attentions, that he seemed to arrive at the conclusion that I was a ‘fucking slut’. I am rather bemused at this deduction, as I would have thought that that type of woman would, in fact, have welcomed such advances.Women also do not like being yelled at from men in cars, vans, lorries and building sites. I know this may come as a terrible shock, as I am sure from the frequency with which it occurs, men must find this a particularly successful way of getting a date. I should note that yelling at a woman who is turning right at a busy road, merely to tell her that you can see her bum, and that you approve, is not a good way to ingratiate yourself with said girl. You are far more likely to find that when you a stopped at the next junction, your tail light will be kicked in. Or it would have been, had I caught up with you.

I am aware that in the animal world, male birds strut and whistle particular tunes to attract a mate. I am sorry to inform you that this method does not work for humans. In fact, the next man that tries to attract me by adopting a pigeon chested stature, whistling at me, and calling out the mating chant of the Greater Spotted Twat, “alrite darlin” will find that his reproductive equipment experience rearranging when they meet my shoe, at speed.

If you see a woman you find attractive on the street, or in public, here is a handy guide to prevent you being murdered by a woman who is finally at the end of her temper with idiots who fail to recognise that women are people, and not things to be pulled, raped, mugged, or just shouted at in a moment of boredom.

• Don’t be an unmitigating bastard. If you are one of these, then stick to pulling desperate drunk women in bars.

• Make sure you are good looking, or at least dressed well, clean, and that you smell ok. If you are unwashed, unsanitary, sweaty, or have a third ear in the middle of your forehead, may I recommend a bath, deodorant and possibly even surgery. If you have any female friends, ask them for their advice on your appearance. Do not get cross if you do not agree with their recommendations. The best way to attract a woman, is to listen to what women think of you. If you think you know better, then you have an answer, right there, as to why you are still alone.

• Do not approach any lone women you do not already know late at night. Some men do not seem to realise, but women have an inbuilt fear of men at night, which prompts us to automatically reject a suitor who approaches in this way. WE WILL ASSUME YOU WANT TO RAPE US. Even if this is not your intention, let me assure you, WE WILL ASSUME YOU WANT TO RAPE US. Whether this is experience, genetic hard-wiring, social conditioning, or something else, I do not know – although I personally believe it’s part of that entirely necessary fight or flight instinct. Part of our brain says DANGER. RUN/FIGHT NOW. Let me assure you, that in 99% of circumstances, lone women at night who are approached by men WILL ASSUME YOU WANT TO RAPE THEM. That other 1% may assume the same thing, but they usually get payment in advance.

• If you do make the error of approaching a lone woman late at night, and you receive an angry, fearful or violent response from the woman, and you are unsure why, please refer to the point above. Women, when they are scared, often respond with anger, and thus may shout at you. If this does occur, the best course of action is to back away, apologise, and leave her alone. If you follow her, or try to continue the conversation, SHE WILL ASSUME YOU WANT TO RAPE HER. If she does get angry and shout at you, I would suggest that, owing to the point above, that this is a PERFECTLY VALID AND SANE RESPONSE.

• Many men seem to be surprised by the reaction of women such as I have described above. I have witnessed men being upset and hurt, even shocked by having their advances rebuffed. As men really do not seem to understand why a woman might reject their advances, I shall try to explain it very, very slowly.

WE. ASSUME. YOU. WANT. TO. RAPE. US.

• Just in case you are still confused, I shall clarify further.

WE DO NOT WANT TO HAVE SEX WITH YOU. IF YOU TRY TO HAVE SEX WITH US WHEN WE DO NOT WANT YOU TO THIS IS RAPE. WHEN YOU APPROACH US LATE AT NIGHT WE ASSUME YOU WANT TO HAVE SEX WITH US. THEREFORE: WHEN YOU APPROACH US LATE AT NIGHT, WE ASSUME YOU WANT TO RAPE US.

• IF you do see a woman in public you think is beautiful, and you would like to take her for a drink (and not just have sex with her) then she may actually quite like it if you ask her. However, this is dependant on your surroundings.

Appropriate places:
Anywhere with lots of people, e.g. the underground, supermarkets, libraries, coffee shops.
Places where people go to socialise, e.g. pubs, clubs

Inappropriate places:
Dark alleyways
Deserted streets
Public toilets
Night buses
Anywhere she is on her own and no one else is around
When she is unlocking her bike from an area notorious for bike theft, theft and violent crime when everything around you is closed

Good ways to start the conversation:
‘I’m sorry, I hope you don’t think this is weird, well, i mean it is, but you’re really pretty, I don’t suppose you’d let me buy you a coffee?’
‘I know this is a bit weird, and I’m a total stranger, and please tell me to fuck off if you want to, but you just looked too beautiful to let you walk past me and out of my life without me stopping to ask you your name’

Something like that. ALWAYS acknowledge your actions in approaching a stranger are weird. ALWAYS give her the option of backing off.

Bad ways to start the conversation:
‘Alrit darlin’
‘great tits luv’
‘fancy one do ya?’
‘OI OI!!!! OI!!! OI YOU!!!!’

NEVER EVER EVER get pissed off if she says ‘no’.

• Sometimes, there are some very obvious signs a woman is busy, and attempting conversation may be an error. For example:

– She is reading a book
– She is listening to music
– She is on the phone

Women often do these things because they enjoy them. Some men seem to believe that women only do these things to fill up the time in between when men are talking to them. This is an erroneous assumption ,and foolish in the extreme.

If a woman is reading, and you talk to her, and she continues to hold the book/magazine/newspaper in the same position and continues to read, then she is NOT INTERESTED IN TALKING TO YOU.

• I am repeating this because it is probably the most important piece of information you will ever know about women. You must always bear this in mind when approaching any woman. We live in fear of being raped. We just do. We may not think about it all the time, but it’s there, at the back of our mind when we walk home. When we walk to the bus stop at night. When we wait to meet someone. When we’re surrounded by men we don’t know. When we are walking on unfamiliar streets. When a man we don’t know approaches us. When we feel lonely, vulnerable, far from home. This is why we do not like it when men yell at us. When they whistle. When they jeer and hoot and shout lewd things from cars. When a man on the street asks us for a cigarette. It is a constant, and occasionally all consuming fear that we will always have. And it is why we reject advances with such volume and stress. Because we are AFRAID because you are BIGGER than us, and STRONGER than us and WE DO NOT WANT TO HAVE SEX WITH YOU.

• If you do not understand any of the above, there is no hope for you.

Yours sincerely,
Me.

P.s. the next man that approaches me late at night while I’m on my own is going to find out exactly what it feels like to have an Abus maximum security D-lock repeatedly slammed into their head. Purely in the name of science, of course.

EDIT: I’m adding this in, to the guys reading this who are saying ‘hey, we’re not all like this…’

Men don’t get it, because they’re either too nice to understand why other men would behave like that, or they’re the fucktards doing it in the first place.

EDIT: A small number of women have said they don’t fear rape per se, more attack. I’m not going to change it, because I think it’s the fundamental difference between women and men walking home at night – men might fear attack/theft/mugging, but there’s something much more basic, more primal, more personal about the fear of rape than the fear of attack. And these men that say ‘allo darling’ – well – these are SEXUAL ADVANCES. And we don’t respond badly to them because we think these men are going to take our phone or our wallet. I’m not telling you ‘YOU FEAR RAPE’. I’m explaining WHY women react badly in those situations. I would go as far to say that some of you have misunderstood my point, zoned in on one part, thought ‘she says i fear rape! no i don’t!!’ and not taken into account the *context*.

If you do still take issue with the use of the word ‘rape’ – please feel free to re-read substituting the word ‘rape’ for ‘hurt’.

EDIT: ‘To Men’ – it will stand. I know there are exemptions, but it’s making people read it, and if it wasn’t controversial, who’d bother? I do accept some of you have valid reasons for taking issue with ‘To Men’, and I agree with those points, but again, it will stand, mainly because I think it’s funnier. I will also direct you to this excellent comment which is written better than I managed:

This is a really common and regular occurrence for pretty much every woman I know. As in, every week, if not every time I walk home alone in the dark. And the people who do it vary hugely; old, young, middle-aged; white, black, asian; British, foreign; tall, short, medium height; fat, thin, medium build.
The one defining characteristic they all, without exception, share, is that they are all men. When it happens on an almost daily basis, to half the people you know, and it’s always  men, identifying the problem as being with (some) men is not bigotry, it’s just a fact of life.”

Reward and Punishment

This week has been hard. My job can be pretty stressful at times, and this week – Friday in particular – was really tough.

By the end of Friday I wanted a glass of wine (and wine isn’t usually my go-to drink of choice) so badly that it made me grumpy. Of course the result of the week and that day in particular being stressful contributed to that grumpiness, but the fact I wasn’t able to relieve that stress and grump with a class of wine made it worse.

I am pleased that at no point did I seriously consider just giving in and having a booze – that wasn’t an option and never even entered my mind – but I was keenly aware of how much I wanted one, how I felt I deserved one, and how I ‘knew’ that nothing else would achieve the same result.

I asked on my facebook: “Work day from HELL. What can I do after work that will achieve the same result as a large glass of wine without being alcoholic or fattening?” Continue Reading