>Melting Pot of Links

>It has come to my attention that I haven’t updated my blog in a very long time.  I have a lot to say! I also have to shower, change and eat in the next hour and three quarters. Doable but adding in a long catch up blog would be the straw that broke the camel’s back as they say.  So this is just basically to say that I’m still alive and doing well.  I’ll update tomorrow for Blogging Against Disablism Day and try to find the time to write a general update too.

For now however a few links I’ve found interesting lately.  These are a real mixture.

Make Change.  A very powerful post from Corey about depression.  She makes some very good points and I don’t think I could have written them as well as she did.

Tina Fey’s Prayer for a Daughter.  OK so I don’t have kids and I am a very long way from ever having kids but this seriously made me smile and laugh.

T Mobile’s take on The Royal Wedding.  I laughed so much the first time I saw this.  Who wouldn’t have absolutely loved it if they’d actually done that?!

Cheap Flights.  This song by Fascinating Aida has been doing the rounds on facebook for a while so you might have already seen it but just in case.  I listened to a couple of their other songs on You Tube and they rock as well.

Kirstie’s posts on Benefits and The Glass is Now Empty are tough reading but an honest account of how hard life with a disability and unable to work can be.

Who is the most deserving? by Sue Marsh will make you think.  I was a bit disappointed it didn’t included any life long disabled people but it’s still a powerful post.

>We have a MARATHON RUNNER in the family!

>My sister ran the London Marathon today!

She completed it in 6 hours, 25 minutes (including toilet breaks she keeps telling everyone so probably 10 mins less than that) and we are all very very proud of her!  Her time is pretty much bang on where she hoped it would be as she’d aimed for between 6 and 7 hours and you can’t get better than 6 hours 25 minutes for meeting that goal.

She did it to fundraise for Bliss, the special care baby charity for premature and/or sick babies.  Her sponsorship page is here.

I’ve not seen her yet as access to public transport and the whole crowds and wheelchairs being a bad mix thing basically meant my going wasn’t a very practical idea (which I’ve been cursing all day).  But having spoken to her and judging by the photo I’ve seen she’s tired but very happy!

(a photo of my sister sitting on some grass having a rest after the marathon.  She’s wearing her running gear and a pink baseball cap.  She has her runners number and finishers medal on)

Very proud big sister here!

>You know you’ve got a bad UTI when…

>I’m slowly getting over this UTI.  I am however on my second type of antibiotics for it.

I was put on Nitrofurantoin on Friday. 100mg x 4 daily for five days.  Normally people are given 50mg x 4 for three days but I warranted a double dose and extra days due to my history.  You know it’s a bad UTI when the doctor takes one look at the sample and goes “yeah you’ve got a UTI my love” before he’s even stuck a test strip in it. Also, how fast did that strip change colours?!

By Monday lunch time I still felt absolutely shit and that was after 3 days worth. My back was really starting to hurt and I was beginning to panic it was going to my kidneys.  Rang and spoke to the duty doctor.  Switched me to Cefalexin 250mg x4 daily for 7 days on the assumption the Nitrofurantoin wasn’t working which surprised me a bit as it’s worked for me before.  I have had a lot of it in the past although not for a good few years.  I took another sample up. Don’t know what it showed but it still had the signs which meant the dr knew I had a UTI before he tested it on Friday.

I’m feeling a lot, a lot better since I stopped the Nitrofurantoin and started the Cefalexin.  In fact I was surprised how quickly I started feeling better.  I still feel totally washed out and tired.  I made it sailing yesterday but it took sleeping most of the morning, going back to bed for an hour and a half rest in the afternoon and a very early night.  And I only managed a very brief sail – when I came in they all asked what was wrong and didn’t I want to go out for longer?

Today again I managed some of my usual Wednesday stuff but it took staying in bed until the last possible minute, a long sleep in the afternoon and I’ll be headed to bed after Masterchef me thinks.

Logically I do realise that a lot of this has to do with going to Naidex last week.  I didn’t drink enough one of the days (or rather I did but didn’t space it well enough to keep my bladder flushed out) and I got really tired which would have taken me a few days to get over and add in this infection and it’s just all worse for it.  But I must admit to being really freaked out.  I have a long and painful history of UTI’s and I’ve needed months of prophylactic antibiotics before to really break the cycle and totally clear them.  And last year one went to my kidneys and I was sat with an out of hours duty doctor asking if I wanted to be hospitalised.  I’m just hoping that this will be a one off and not the start of another lot of problems…

>Not really an update

>Naidex was fun.  If you’ve been following my twitter stream for the past few days you’ll hopefully know that.  But you’ll also know there was lots of access related fail which made for stressfulness and made things difficult.  And if you’ve seen my twitter stream today you’ll know that I woke up this morning to the realisation that I must have seriously misjudged my fluids yesterday and not drank/been to the loo often enough because I felt crap and possibly had a UTI.  I’ve been to the Dr who has confirmed my diagnosis and given me antibiotics.   Fully updating on who I met, what we did, what was fun, access fail etc will have to wait.

>New Layout – Victorian Grunge

>I’ve been meaning to redo my layout properly for ages.  But I was having problems with the new template designer.  It wasn’t until today that I realised that if I used a different template as a basis it would all be much easier.

The background and header and made using a free digi scrapping kit.  It’s one I’ve had saved on my computer for about three years (since Feb 2008 according to the file) and had forgotten about until I went digging through my documents earlier today.  The long time readers might remember it from 2008 where the current background and variant of my header graced my Wheelchair Princess blog for some time.  I didn’t have details of where the kit came from but it’s called Victorian Grunge and a quick google finds it available for free from this site.

I was hoping to use web fonts to change my title font etc but the tutorial I read on it confused me a lot and I couldn’t find the font I wanted in a read made one.  So I changed it in the html which does mean people might not see it.  It’s Kristen ITC and it’s the font I’ve used for my header image (which people will see).  If someone wants to demystify web fonts for me that would be lovely.

>Disability Normal – The Twitter Version (Part 2)

>Last night I wrote a blog entry – Disability Normal – about a new friend’s comments about getting an insight into my life and what her insight made me think.  It sparked quite a conversation on twitter this morning and I spent some time gathered the tweets together.  Those can be found in Disability Normal – The Twitter Version.  I then went up to my parents house for a Mothers Day barbecue (in the rain) and returned to discover in the several hours I was out it had continued.  So this is part two.  I rather suspect I might end up doing part three as well/.

people think because you are disabled, you should have no opinions of your own, be passive and greatful – BIgPawedBear

Possessing ridiculous amount of things featuring velcroix and a bathroom with more white plastic stuff in than an OT dept. – GentleChaos

Most of the people on here whom I’ve known for years have chosen not to follow back. Presumably I bore or irritate them.? – JulianYon

have you ever had the “if I were like you I’d top myself” line? How  is that? (I’ve heard some say it is.) – Indigojo_uk

Parking in disabled bay & havin ferocious older people glare/shout @ u only to melt away as u produce ‘chair, wheels, cushion – GentleChaos

@ We’ve all been there! You get an almost sympathetic nod of approval once the crutches/scooter become evident  – PositiveAboutMS

Meeting amazing friends that you may never have encountered otherwise 🙂 – GentleChaos

 Complete strangers share their medical history&layout of home with me even when I’m not wearing OT badge. – GentleChaos

 or maybe OT normal? Finding that I can’t help checking out other people’s assistive kit..Often thinking dang that’s cool – GentleChaos

Silent panic that grips conversation when blind person says ‘I saw that on TV last night’ – longcanejane

Being told by a complete stranger that if you only eat [something] or don’t eat [something] you’ll be fine – IncurableHippie

Complete strangers telling you “My aunt had that and she died of it!” That’s meant to be helpful how, exactly? – MargoJMilne

Whenever two or more are gathered together let it be presumed to be an outing from a day centre. – Bubblejet

When it gets more and more normal for complete strangers to offer to pray for you – IncurableHippie

Annual Medical Assessment of Benefits: Need to demonstrate that faith healing hasn’t yet miraculously restored missing limb   Eridanus

 wondering why they’re talking to you in a loud, slow voice, then remember you’re using a walking stick. – LadyLikePunk

open stares when enjoying yourself – LadyLikePunk

Being told that a friend/family member/acquaintance got over it with healthy eating and excersice so you don’t need meds – Feministinti

Getting more and more irate when people decide that their bag needs a seat on the bus more than you do – IncurableHippie

Not even bothering to explain some of the more obscure limitations you have – IncurableHippie

When friends/family/even strangers get angry with you when you don’t let them make your life decisions for you – FeministInti

 “I know someone with that, hers is much worse than yours though.” – Bolli_Bolshevik

“Oh yes, I get a bad back sometimes” – Bolli_Bolshevik

Having shop assistant explain to you how to work a book of stamps – MargoJMilne

Being ignored in shop queue, in favour of person behind you – MargoJMilne

 “You shouldn’t take those meds, they are addictive” “Yoga is supposed to be great for that” christ i could do this all day – Bolli_Bolshevik


people asking your friend if you are okay instead of you because you are in a wheelchair – NevHarvey

cooked meal does NOT mean “popped something frozen into the oven” – and the benefits paperwork doesn’t make that clear – LonAitewalker

Choosing between excessive pain and not being able to function due to the side effects of pain meds. Every day. – IncurableHippie 

People tying themselves in knots trying not to say “Take a seat”  – MargoJMilne

approaching situations calmly when non disabled people are flapping like mad – BIgPawedBear

expectation that being over 60 trumps any validity you have to a seat” – Bolli_Bolshevik

 No irony spotted by the work colleague who describes her day as ‘mad’, ‘manic’ and ‘nuts’ – MnicSleepTeachr

Being questioned why you have a blue badge – EadieDog

“I didn’t know deaf people could read and write.” – SlyJuana

“you’re oral? are you wanna be hearing?” (from other deafies) – SlyJuana

“you need to work harder. stop being so lazy. you’re LAZY.” – SlyJuana

“can you tell her… ” in situations where the speaker doesn’t acknowledge my presence & only the interpreter’s. – SlyJuana

“He’s drunk,p*ssed himself&had a fight.Look at the blood everywhere!Leave him” ‘no ,avad afit, help’ “See he’s slurring!” – Robbsart

Long stares because I wasn’t using a stick yesterday and I am today. – Jermec

“there aren’t many attractive deaf people” (or variation thereof) – SlyJuana

stress making my own condition worse, but as there’s no one else to care for son, pushing on to early grave regardless – LonAitewalker

So tired I want to cry, but dragging self to park/school/shops with kids. – Suey2y

When your new work trousers have holes in&your coat cuffs are frayed two days in – GentleChaos

Promising to go out for the evening but being so exhausted by the process of getting ready that I end up back in bed. – LatentExistence

finding time to dismiss the cat staring at me in the kitchen, because I don’t have a cat & it is my mind making things up – Robbsart

Then when the cat has gone I then have to ignore the people that are talking to me because theres no-one else in the house – Robbsart

Watching everyone else have fun and enjoy life while I’m stuck inside doped up on painkillers and oxygen… – D_incurable

When u wear reflective cycle bands to roll up your jacket sleeves…  – GentleChaos

questioning logic of needing powerchair for six months before NHS actually gives you one – apparently, crawl for a bit, ok – LonAitewalker

Have you tried acupuncture/osteopathy/organic vegetables/prayer-healing/ (substitute your own ‘cure’)?  – MusicMP

I fell to the floor in shock when son said his first words to me…he didn’t speak till he was four. – LonAitewalker

 ‘Really struggled to get out of bed this morning!’ Arrrgggghhh!! – MnicSleepTeachr

Bracing myself for the pain on those rare occasions I get laid. – JulianYon

Getting a cluster attack & having 2 leave the rare social outing halfway through as my O2 tank is 2 big 2 take everywhere. – D_incurable

Buying concert tickets you know you’re unlikely to be able to attend – MnicSleepTeachr

People told to take photos of me outside whatever the weather in case the flash makes me have a fit  – Robbsart

Having expert knowledge of the location and crip friendliness of most of the budget chains of hotels – CrimsonCrip

Can’t sleep well until I have both been up for two days and on drugs. – mxmlxviii

Feeling like someone wedged a tennis ball behind your knees. – SpazGirl11

Getting down on the floor and then realizing you can’t get up again…”I’ve fallen and I can’t get up!” – SpazGirl11

Fighting to stay awake watching telly or reading a book at noon because your painkillers have knocked you out for the day – D_incurable

“Everyone gets sad sometimes. You’ll be fine after a good night’s sleep.” Uh.. Yeah. Then why has it lasted for over 10y? – Caralynnem

“you’re a pretty woman. what’s the problem?” (mental health worker said this to me during assessment some years ago) – SlyJuana

Having people berate me for not getting out of the disabled seat for an elderly person who doesn’t want the seat anyway – Mradclyffe

Being pretty much constantly in pain. No matter where you sit, how you sit, what you do…. – SpazGirl11

“Cheer up love, what have you got to be so miserable about?” from complete strangers. How long have you got?!  – Mradclyffe

staying awake til 10:00pm is a rare adventure  – at least, staying alert is! – StickmanCrips

“Oh yes, I know about fibromyalgia, a friend of mine had it in her shoulder”. – Matofcourse

The irony of being told by friends and strangers that mental illness is all in my head.  – Mradclyffe

Laughing with friends about my habit of using drugs before&during nights out so I can have a good time..(prescribed) 😉 – GentleChaos

>Disability Normal – The Twitter Version

>My previous blog post has inspired quite a lot of chat on twitter with various people sharing their own disability normal things.  Here’s the list: (I’ve not linked the accounts because it would take FOREVER but you can search for them on twitter using the names listed or by searching #DisabilityNormal

Falling up stairs – SpazGirl11

Spilling food – SpazGirl11

Not being able to find a coffee shop without a step – Batsgirl

On the bright side, orders brought over to my table in Starbucks rather than standing around waiting – Batsgirl

filling in a form within an hour of it dropping through the door – but having to wait 3 days to be able to post it back – Batsgirl

Encyclopaedic knowledge of the opening/delivery times and phone numbers for local takeaways – Batsgirl

Being on first name terms with staff from three different train stations  – FunkyFairy22 (me)

Dropping something and not being able to pick it up because you already dropped the easireach – crimsoncrip

keeping floors clean not for good housekeeping but because you spend so much time lying on them – Batsgirl

Choking on water – FunkyFairy22 (me)

Buying FABULOUS shoes in the safe and certain knowledge that you don’t HAVE to be able to walk in them 😀 – Batsgirl

almost permanently having a “builders bum” because your trousers always slip when you transfer – FunkyFairy22 (me)

Being invisible when you go out – CrimsonCrip

having it be your fault when someone walks into your wheelchair. Even though you tried to warn them. – FunkyFairy22

Being asked personal questions by random strangers, who think its ok to ask you when they wouldn’t ask a noncrip  – CrimsonCrip

Complete strangers trying to take over pushing you and then acting insulted when you very firmly and loudly say NO!  – FunkyFairy22

when people realise I’m a disabled parent of disabled child “oh god, how do you cope?” never “can I help?” – LonAitwalker

people in various city centre shops know to keep an eye out for my son and have my mobile in case he escapes  – LonAitwalker

when over ten pills a day are considered standard, and over 15 is “recommended” LonAitwalker

Having to limit fluid intake at strategic times when an accessible toilet is knowhere to be seen – CarlFThompson

When you go out with friends to a show being asked if you ‘really’ want to sit with your friends or is crip only ok – CrimsonCrip

medic read story to my son to calm him as I was loaded in ambulance. Child wants me to be ill again so he can come back – LonAitewalker

when getting together with friends who are all crips requires feats of culinary wizardry to make sure no one gets ill  – LonAitewalker

when getting to where we need to be takes forever because the lift isn’t big enough for three crips, two who are in chairs  – FunkyFairy22

Dust is like Kryptonite  – crip_tic

Crossing the road in a diagonal type way to find a dropped curb on the opposite side. Or going on road for ages – FunkyFairy22

psuedo-acquaintance saying “oh it’s fine for YOU to eat cake, I don’t imagine you date much since you’re….you know.” – LonAitewalker

Setting security alarms off when entering & leaving shops, holding up hands & saying ‘it’s the ‘chair’ whilst going a bit red 🙁 – GentleChaos

crossing the road at a dropped kerb, to find someone parked across dropped kerb on other side – BigPawedBear

having to ask someone for help to get money out of cashpoint – BigPawedBear

getting urge to hold my cane out like a lance and joust with another powerchair user- don’t tell me I’m the only one! – LonAitewalker

asking shop assistants, “what else other than “insert product here,” do you sell? as i can’t see 2 browse the shelves  – BigPawedBear

Paying for your groceries then realising u still have 2.5kg of potatoes on luggage bars of wheelchair :S – GentleChaos

The train inspectors are scared of YOU! – CarlFThompson

Being pathetically grateful for kind supermarket cashiers who fend off the impatient customers behind me & take time.  – CatONineTails

Having to play “guess which lifts are broken today” when trying to get to college/work – Dannilion

Being glad your powerchair is fixed because you can go out and you want to go to Drs about a niggly thing – FunkyFairy22

Your attempts at losing weight waved away with “no one expects you to be thin, you’re in a wheelchair” (true story) – FunkyFairy22

Finding that I flip between being invisible & the most interesting thing in the world when just nipping out for a sandwich. – GentleChaos

knowing more about how “the system” works than the people who work in it. – FunkyFairy22

Done this before but… People assuming that I automatically know every other wheelchair user in the town. – GentleChaos

Being told to easy your lunch when it’s not been cut up for you and it’s out of reach anyway – Dannilion

all my friend’s theory is getting enough of us together = one “whole” person so we tackle things in groups – LonAitewalker

Having call buttons and emergency pulls that are too high to reach – JohnUK89

watching children with autism flock to son and speak secret language-talk as if they’ve known each other for years – LonAitewalker

Getting the giggles coz someone walked into a bench/lamppost/step coz looking at me not in front of them. – GentleChaos

Being told I’m “brave” for doing my grocery shopping, or something equally unexciting. – MargoJMilne

the assumption: if I can garden/paint/cook I’m not in pain. Medicine cabinet says otherwise. Bang goes a theory – LonAitewalker

My neurologist asking my opinion of recent research on my condition – MargoJMilne

People saying ‘oh you’re speedy’, ‘do u have a license for that’, ‘ooo mind my toes’when rolling down street in my ‘chair. – GentleChaos

the relief of meeting rheumy who works with bodybuilders and knows I don’t “just need to lose weight” – I outlift HIM. – LonAitewalker

old ladies in their 70’s walk ahead of me on a hill and smirk when they pass me up. Damn it. – LonAitewalker

People insisting on “helping”, usually in supermarkets with my chair, when I’ve already politely declined. – RantsfromRon

Strangers stopping you in town to ask about your chair then wondering “how do you manage the loo?” – FunkyFairy22

Complete strangers thinking they have some sort of right to ask about your medical history – MargoJMilne

Bein chased by kind people who want 2 give me a brollie & then gettin soaked whilst explainin I cant carry it – GentleChaos

Carers and others who think we will conform to their timetables – CrimsonCrip

When you mention coming off your medication (agreed w/ GP) and someone on twitter asks if its a good idea  – FunkyFairy22

When you have a folder on your PC full of standard letters to deal with discriminatory service  – OneOffDave

@MargoJMilne I know what u mean… It’s worse when ur at the Post Office and everyone turns around to listen…lol – PositiveaboutMS

Nice people offer to put groceries onto conveyor, you say thanks but no, they do it anyway – MargoJMilne

When you get better health advice from fellow crips on twitter than from your doctor – IncurableHippie

Your friends toddler has a dolly with a walking stick named after you – IncurableHippie

total strangers grab my son and yell at him to “behave” – ex having to step in before I throttled them – LonAitewalker

Having to take eight years to explain each of my 3 developmental disorders – Kitty_B_Good

Coming round in A&E claiming you are 18 and have no children, as your confused son looks on! – Romilagupta

not using feel-good “gift of disability” or “reclaiming” words. I’m disabled. If that makes you uncomfortable, cope – LonAitewalker

Ok, time to pass out from new meds for a while #disabilitynormal  – IncurableHippie

People visibly panic when they see you with other disabled people in a group – IncurableHippie

Crossing the road at a dropped kerb, to find there isn’t a dropped kerb on other side – anjak_J

telling child to clean some lego off the floor of his room has turned into all day ordeal of meltdown refusals – LonAitewalker

Some services and facilities are so bad that complaining becomes the norm – CrimsonCrip

Convincing your friend’s brother you’re cured just because you stood up – FunkyFairy22

two hours of prep for 10-minute appt makes GP visits moot, so we skip them – that doesn’t mean we’re “better”! – LonAitewalker

People describe you as having “no social skills” because you complain often and don’t take shit – FunkyFairy22

Getting strange looks when you use your prosthesis to stop lift doors closing – OneOffDave

clicking refresh on twitter a lot because a) it’s all the social interaction I tend to get and b) it keeps me awake – LonAitewalker

You ask your PA to help you put on a party outfit – you’re not going out for 10 hours, but only have 1 care call a day – Batsgirl

The term #spoons has entered your daily vocabulary and friends have no clue what you are on about – OneOffDave

Stop The World I Need a Rest – a Disability Normal Blog post by Latent Existence

Taking longer to get ready than your teenage niece but somehow failing to look at all as if you’ve tried 😉 – GentleChaos

Changing sides of street at high speed to avoid being blessed by random preachers in Cornmarket, Oxford #wheelchairuser – GentleChaos

you’ve referred to yourself as ‘a bit crippled’ then realised you offended the able bodied person you were talking to. – StickmanCrips

being prayed at and ‘faith-healed’ by complete strangers; or kissed by homeless alcoholics with sandpaper-like faces. – Eridanus

>Disability Normal

>On Tuesday I bumped into a new friend in town and we went for a drink.  We chatted for quite a while about this and that.  It was fun.  She’d mentioned maybe going to Bicester Village sometime and said it would probably be short notice.

I didn’t expect it to be quite as short notice as it was (one hour) but we went Wednesday along with two of her daughters.  That (Wednesday) was I think the fourth time I met her.  I got some sailing gear (which unfortunately doesn’t fit) and a few small silly bits in Accessorize.  I think realistically there isn’t much at Bicester Village for me – being fat and restricted in what you can buy because of disability (i.e. shoes are a nightmare and certain clothes types don’t mix with a wheelchair well) and also being on a very limited budget but I’d figured that might be the case.  I’m told we didn’t see more than about a third of the place though so I could be wrong.  On the whole I thought it was very accessible although I was disappointed that they don’t have a shopmobility there.  It was flat, pedestrianised easy wheeling but you really would have thought a place selling stuff that high quality and expensive could afford a few powerchairs for customer use.  But then crips are invisible, after all.

Anyway one of the things which came up a few times – when we were chatting over a drink on Tuesday morning and again when shopping Wednesday – was about the “insight” my new friend said she was getting into my life with a disability.  I found that quite interesting too.  In fact in some ways I was surprised by some of the things she was surprised by

There are things about my life that make it different to other peoples – both other people who are nondisabled and other disabled people too.  But the same is true for everyone in this world.  I am not a tick in a box on the census form (oh that was fun to fill out last week!) but then I don’t know anyone who is.  And if you find someone who says they are then they are probably lying – either to you, or worse, to themselves.

Thinking about it, there probably are a few times when I don’t make it clear what my abilities actually are, just what I can’t do and what I struggle with, how I manage things, what I do etc.  In a way that’s probably denial.  But realistically it’s because I live in a totally accessible flat where everything is on wheelchair height, set where I need it and basically perfect for me.  And I’m right by the station so going places on the train isn’t a drag (although I do still need to book 24 hours in advance which is why I wasn’t able to go to Oxford today).  The town I live in is relatively accessible.  I’ve got a really good manual which is supportive and has reduced my pain a lot.  And I’ve got a powerchair.

All of that allows me to be as independent and outgoing and “get on a do it” as I am.  Which seriously removes a lot of the disabling barriers in my life.  But if you take those away, like when my powerchair broke down (which was something my friend and I had talked about) or when I visit a town that doesn’t have access as good (which also happened when we tried to go into Bicester itself for some dinner) and then I realise just how much of a difference those things make.  I’ve always known that… but seeing it can be a bit of a hit and make it difficult.  Almost as if just how disabled I am hits me in those moments.

But still my friends comment about the insight she was getting into my life surprised me.  Because not being able to go into a possible choice for dinner because of access – disability normal.  Wheelchair parts taking forever to come in – disability normal.  Repairs being as expensive or possibly more expensive than those for a car – disability normal.  Needing to plan train journeys a day in advance – disability normal.  Taking what many people describe as a lot of medication – disability normal.

Disability normal.  The sort of thing you accept and you might occasionally have a moan about but you hardly notice because it’s just, well, normal.  But also the sort of thing that shocks others and makes you realise just what your life is like