I'm off! Well, at around 3.30 am I will be. I am both very excited (sitting here with a silly grin on my face) and absolutely terrified.

I had to phone round all the various 'booked assistance' points yesterday and today to make sure everything was properly booked, apart from anything else I check in at 5am so it's not like I can phone a few hours before I leave. The airline were really polite and helpful, assuring me the wheelchair assistance is booked at both airports, but the part which really concerns me, the one where I was supposed to be met with a wheelchair at just after 4am at the official car park hasn't been booked. When I spoke to the guy I thought it seemed incredibly quick to to sort everything out, and now I know why..he didn't bother even trying to book any assistance, just told me he was. The girl I spoke to today from the car park bookings insisted they don't/won't arrange assistance and put me through to the concierges who told me they were very busy at that time of night (really?) and so couldn't possibly book any assistance, but if I phone when I get there, 'they'll see what they can do' Right now that isn't sounding much fun to me, and I know it'll be far worse when I'm on my own in the carpark in the middle of the night.

So, worries about getting stuck in a car park in the middle of the night aside, I'm off to try and get some sleep, tomorrow's going to be an amazing day, but a long and very tiring one. Back at the weekend!

Stupid is as Stupid does

Far from the plasma screen and real leather recliner lifestyle so popularly described in many right wing blogs and msm, the reality of life on benefits is life lived on a knife's edge.

Neighbour has been experiencing increasing financial problems which have come to a head today. She has congenital hip problems, was actually born without a hip, no socket or femur bone which in itself you'd think would be painful enough, but when she had her artificial hip put in some years ago the surgeon caused massive nerve damage which no-one since has ever seen fit properly attemp to treat. This of course impacts on her knees, the whole of her pelvis and spine.

As a result of these problems neighbour receives Incapacity Benefit at the long term higher rate. It totals up to around £368 every 4 weeks. She has been receiving the higher rate of the mobility component of Disability Living Allowance (DLA) which is £180 every 4 weeks. Housing Benefit of approximately £82 per week, with a rent of £475 per month. Suffice to say she has over £100 a month shortfall between what housing benefit provide and her actual rent. There are never available council properties for people without children, with disabilities who are under 65, which is why a few years ago a social worker wanted me to be grateful for her efforts to put me into sheltered accomodation for the elderly. I was 28. As neighbour receives Incapacity Benefit she only gets part of her council tax paid for her.

Recently neighbour reapplied for discretionary housing benefit, a top up to housing benefit paid to those in particular need. It's difficult to get and deeply degrading to apply for, you have to justify every penny you spend, supplying receipts for your food shopping etc which, whilst making it utterly humiliating for those genuinely in need, I suspect may make it a fraudsters paradise. Although she had previously been granted this top up payment (but still left with a much smaller shortfall) this time she has been refused. No reason was given, it's just how it goes.

Neighbour phoned the Benefits Enquiry Line for advice. They informed her that she receives too much money to be eligible for Income Support. They also informed her that her DLA mobility should have ended two years ago (she had thought it was a 'lifetime' award, she's only going to get worse after all) and that despite it being completely the fault of the Department of Work and Pensions for continuing to pay her after not sending her out more forms to assess whether she was still entitled to DLA they are very likely to attempt to aggressively pursue her for this money.

Neighbour is terrified. It is near impossible in the area we live in to find properties to rent for under £450 per month, those scant few that appear for less are in areas no-one wants to live in and certainly where a single, disabled woman would feel even more vulnerable, that's if they don't state 'no pets, no smokers, no DSS' like the vast majority of private rentals do. Neighbour is facing a situation where her total income will be under £700 every 4 weeks, with rent of £475, thus leaving her just over £220 to pay council tax, gas, electric, all other utilities. They add up to more than £220 per month despite the fact she has no luxury items. I don't think it unreasonable to count an internet connection as vital when you are lacking in mobility and have to shop for food that way.

This is of course the same neighbour who despite her own problems getting around has been ensuring that I eat and helping me since social services decided that despite witnessing my hip dislocating repeatedly and without trauma, commenting on the obvious amount of pain it caused, recommending I get a community alarm as I would be safer that way, that in their opinion none of that meant I needed any help as I could obviously manage.

I am in many respects luckier than neighbour. I am substantially more disabled, and have care needs as well as mobility. Who'd ever have thought being more disabled or that pissing yourself could ever have an upside? Well, it means I'm entitled to the care component of DLA, although funnily enough those needs I have during the daytime that the DWP granted me middle rate care for bizarrely disappear at night, well according to them they do, and that's so they didn't have to grant me the extra £20 or so a week that giving me higher rate care my GP wrote and told them they should do, would have meant.

Unlike neighbour, I'm not entitled to Incapacity Benefit. Well, not really. The benefits system is wildly complicated you see, so I had to apply for Incapacity Benefit and Income Support so that I could be turned down for Incapacity Benefit and only get the national insurance credits part of it and be granted Income Support. Why can't I get Incapacity Benefit? That's a long story, but to do with not having been diagnosed until I was 28, being told I was lazy and malingering so working multiple part time jobs too poorly paid to reach the NI contributions limit so I don't have enough contributions to entitle me to IB and although I was substantially disabled in my early 20's, I wasn't believed so was determined to work and when I did try to apply for benefits found it rather difficult with a GP who insisted I was an attention seeking liar.
So, unlike neighbour I receive Income Support, which is paid at a higher level because of the premuims granted for my care needs. However, should I ever enter in to a relationship, even with someone on a low income, whoever my partner is will be deemed financially liable for me and all my (means tested) Income Support would stop. A hefty burden on any relationship I'm sure you'll agree, whereas Incapacity Benefit is non means tested and so if neighbour were to be in that situation her IB would continue.

People on Income Support are entitled to have all of their council tax paid for them, despite often having higher incomes than those on Incapacity Benefit. I get around £10 per week more than neighbour in housing benefit, which I am apparently entitled to because my care needs mean I need more space for equipment etc, although just like neighbour I still have around £100 rent shortfall.

Neighbour will have to wait at least a week until the DWP send her out new forms to fill in for Disability Living Allowance. It will take around a week, probably more to fill out the forms correctly, we're not sure where to find the specialist help she needs to do this in our area, services have been cut. Last time I had to reapply for DLA it was approximately a 3 month wait to hear back. In the meantime neighbour has more going out on rent and utilities than she does coming in.

This is what it's really like to live on benefits. No plasma tv's here, just fear and if we don't pull together as friends and a community, as I've experienced in the past, you can get very cold and very hungry, very quickly. Welcome to the real world.

Meeting Mr Big

I'd been diagnosed about six months previously and was very wary of the whole idea of relationships after a near miss with a guy who'd turned out to be a total psycho. I hadn't a clue where to start with explaining the concept of EDS to a man or what has always bothered me more, that I'm not able to work because of it and so I entered in to a pact with a mate who was in similar circumstances that we would sign up for a dating site together.

At first it intimidated me, all those bulk emails from men who 'luvved gettin pissed an avin a laff', mixed in with offensive ones from angry abusive men, and the odd ones asking about a price for the weekend so I withdrew as I do whenever I'm scared and, on this occasion, hid the computer in a cupboard so the really scary blokes would have no chance of finding me. Eventually, once I'd worked up the courage to run the gauntlet of the dating site again, I started to find the real emails in amongst all this, and something about his stood out, although not his photo as that made him look a little like an upper class playboy and thankfully nothing like his true gorgeous self.

After my initial reply to him, we emailed back and forth and rapidly progressed to spending hours in the evenings talking about anything and everything via msn. He was highly intelligent, he made me laugh, we had things in common, he seemed kind, interested in things as much as he was interesting and right from the start, even through words on a screen, bizarre though it seemed, I could feel how gentle and compassionate he was. This was to be my first experience of dating as a 'disabled person' with a 'label' and I thought I was ready for it, thought the best thing to do was to tell him about having EDS before we met and then if it was a real issue for him, well, we never had to meet. It didn't seem to be a major problem, not then anyway.

The night we first met in person we went for dinner at a restaurant near my home. I had such butterflies in my tummy waiting for him to arrive, part of me didn't think he'd turn up, part of me wasn't sure I wanted him to. I'd had a really bad few days in the run up to our date and had my painkillers doubled by my GP so I was both unsteady on my feet and fairly floaty. I'd almost fallen over a couple of times before we even got in the door of the restaurant yet I was so insecure and so unused to being shown any kind of assistance willingly or gently that I was taken aback and doubtful when he took my arm to steady me.

I was so busy panicking that when we sat down and I saw his hands shaking I didn't think he might be nervous, I stressed myself into thinking I was on a date with a raging alcoholic. Because that made perfect sense. I couldn't understand what a man like him was doing being seen with someone like me, but it made sense if he had a drink problem. He ordered a G&T. I calmed down a bit whilst panicking at the same time. I was on a date with a complete alki but that was ok, I could get that.

The fact that he didn't have anything else to drink as he was driving ruined my alcoholic theory, but I continued to panic as firstly I couldn't cut up my own food, prompting him to calmly take my plate, cut everything up and hand it back, then I had to keep standing up by the side of our table to try and carry on our conversation throughout the meal as the hard wooden chairs were just too painful for me to sit on. Despite my usual ability to talk increasing amounts of nonsense the more stressed and embarrassed I get, he evidently wasn't too put off as he came back to mine for a cuppa where he had to let both of us in to the house as I couldn't open my own front door. Of course that was unless he was 'one of those perverts with a fetish for disabled girls' like so many people had made sure to tell me he must be.

 I think my inability to get in my own home was probably the point he decided it was safer to take over, throw me out of the kitchen and make the cups of tea himself. We sat on the sofa, drinking them and chatted for hours, kitty #1 firmly planted in between us, like an indignant feline shield, growling with menace if he so much as leant towards me whilst he was talking. Although my wobbling didn't seem to bother him, he spent half his time catching me as I tripped over (I'm always far more unsteady if I'm nervous or excited), his touching me did seem to further enrage the cat who was waiting, poised and ready to pounce, when finally in the wee small hours he did kiss me.

Oh my god what a first kiss it was. Unforgettable. This is a man who, from the first moment he touched me has been able to take my breath away. In every way. As he kissed my neck and my senses reeled, they reeled just a little too much and I coughed, stopped breathing and promptly went a bit blue in front of him. Which is just what you want to boost your ego the first time you ever kiss someone. I was hugely impressed and reassured by his calm as he held my hand and asked if I needed his help as I rearranged things in my throat, put my errant thyroid gland back into place and got my breath back. Despite his outward calm he must've been terrified, I was certainly scared as it had come as such a shock, although it didn't stop him kissing me again once I'd regained some sort of composure. All of which of course I lost as soon as he kissed me. And kissed me. For hours. Everywhere.

I think it was that I was so convinced I would never see him again that made me so uninhibited. I wouldn't admit it to myself until much, much later, but I'd been lost from the first moment, never mind the first kiss, but I've always thought it'd be the last time, he'd realise, find someone better, more suited to being with someone as special as him.

He left in the small hours of the morning, an hour's drive away from home and due in work a few hours later.

Show Me Heaven

It's been a funny old weekend, well I guess any night that involves me drinking alcohol and being described as (without my knowledge at the time) 'the entertainment' for the evening is predictably strange.

A couple of months ago when the firemen came round to apparently fit new smoke alarms, they filled out a form stating I had mobility problems, which eventually led to an assessment and a decision by the er, lets call them special fire people that if I were to burn the house down in my candle obsessed pyromania it wasn't very likely I'd wake up to the smoke alarms and that on my dodgy joints I wouldn't exactly be able to sprint down the stairs to get out. For all these reasons the special fire people decided I needed a type of wireless smoke detector/alarm system that is linked to an alarm box that in any kind of emergency situation I can just press a button and it'll go through to an operator who in theory will speak to me via the box now situated in my bedroom and either check that I'm ok, or if needed call an ambulance or fire engine. Very similar systems are used by the police install in cases of domestic violence.

So friday morning started the chaos when the woman with the alarm part of the system arrived 20 minutes before the time I'd been told she was due to start connecting all this stuff up to the phone line which unusually enters the house in my bedroom. It didn't go smoothly and she was still trying to get it all sorted when the firemen (not the gorgeous ones this time!) turned up at the pre-arranged time to fit the smoke alarms. They may not have been the gorgeous ones, but they were lovely and I'd actually met one of them previously at the jobs fair which we were both agreed was a non sequitur.

For some reason, despite using broadband filters the alarm system just didn't want to connect properly and there was no dial tone when the alarm box was connected to the phone line. Now, I'm not very keen on having this system anyway, instead of making me feel safer, for some reason it just makes me feel more vulnerable and I'm really uncomfortable with the idea of the connecting box being in my bedroom, even though a button has to be pressed to connect up with the call centre, it just feels deeply intrusive and too big brother ish to me and as I wouldn't call for help that way in an emergency I can't really see the point of it all.

It took about an hour of fiddling to try and get it all to work, involving much messing about in my wardrobe by this woman as the phone plugs in there and of course that was where I'd thought I could stash both my bong and newly purchased bag of naughty underwear safely out of the way when I'd panicked and heard her arrive so early.

Fortunately it was all sorted and working by early afternoon as it was neighbour's birthday and I had lots of chasing around to do before we all got together to celebrate in the evening with a takeout and booze. Yes, even me. Apparently, I say apparently as the evening is very fuzzy to me, I was falling over drunk on what neighbour describes as a thimble full of white wine when they started feeding me shots of some cheap imitation Baileys, which already being drunk I just knocked back. I do remember headbanging to what may have been Peter Gabriel (the music had nothing to do with me!) and giving myself whiplash in the kitchen, and I know I showed neighbour what a rabbit was on her pc before I started drinking, causing neighbour chick to get very upset at 'such dirtyness' and 'why would you want to put something the size and shape of a rabbit up your chuff', she was most confused at the concept! Such horrified reactions once again has confirmed my decision that they're all getting rabbits for Christmas...I'll use lovehoney's 3 for 2 offer!

I was so drunk that neighbour had to open my front door for me at around midnight as I just needed my bed, but it turned out I hadn't been too drunk to get hold of her mobile phone. Neighbour has recently been in contact with an old boyfriend and I must've thought it was a good idea to attempt to text this ex for her as she found loads of half written nonsense texts in her drafts and one I did manage to send to him informing him I was her drunk mate and she'd made us listen to Show me Heaven over again (which was their song back in the day) Neighbour hasn't heard from her ex since and says it's all my fault. She's probably right. Big got a load of drunk text nonsense as well, but at least I managed to tell him he had a big cock and that I was being listened to peter gabriel. For some unknown reason. Peter bloody Gabriel aside this would be the reason I don't really drink, all I have to do is sniff the stuff and I'm falling over which has caused some pretty humiliating incidents in the past, and meant I spent all friday night trying to pour water down my neck while the bedroom span. I'd forgotten how horrible hangovers are.

Still, an improvement on saturday night when the cat woke me up at 4am puking on my bed.

As I said, its been a funny old weekend.

Routine


It occurred to me some time back to photograph all the items I receive on prescription so people could see an example of the typical routine work of the NHS. As I've mentioned before I have to order all the items I need at the pharmacy, who then take the prescriptions to my GP's practice for me, and collect them again so that in theory I only have to go back to the pharmacy to collect the filled prescription. In theory. In practice what tends to happen is that like today I go to the pharmacy and some of the items will be there but despite having been ticked on the prescription refills, double checked by the pharmacist and pointed out to the receptionists at the GP practice by the very experienced pharmacy technician who is well used to managing my medication the painkillers I take which are controlled drugs will inevitably be missing. Sometimes this is because a prescription for controlled drugs has to be filled in by hand and therefore takes longer than other items, but usually for some reason we've never discovered it seems to be forgotten and so requires multiple trips to chase it up every month. I once worked out that I must spend around 4 hours every month chasing up medication which whilst I'm not working is no more than a drag but when I did work, even though it was only part time caused huge problems trying to organise all this.

I went to my GP practice after I'd been to the pharmacy to collect the letters I need to fly, but when I checked them although the attached list of medication was accurate the dosage of medication written in the letter was incorrect, probably a typing error. I wasn't sure whether this would be a problem or not, but the receptionist felt it would be better for it to be altered rather than the airline having a problem with it and refusing to allow me to take vital medication on to the plane. I know this is a security requirement for the airlines but I can't help feeling this just puts additional pressures on GP's already overburdened with paperwork, particularly when there doesn't seem to be any clear guidance on what is and isn't needed. A copy of my prescriptions isn't adequate, but we couldn't find any details on what needed to be in the letter. As I'm flying twice, we also couldn't find out whether I could take a photocopy of a letter for the second flight so my GP has written two separate letters addressed to each airline and now both of these need altering. Work like this is not within the GP contract and I feel the £10 I'm being charged for this is more than generous.

Whilst I was at the surgery I also re-ordered the prescription for my painkillers as it simply hadn't gone through on the system, and was made an appointment for next week with my own GP. I've had a minor fungal infection on my back for weeks which has got worse instead of better with the shampoo the pharmacist gave me to treat it. I suspect that the real problem is that I've tried to wash my back with one of those long handled brush things and as my skin is fragile I've actually managed to cut and graze the whole of my back.

This is the kind of routine work that GP's, practice nurses, pharmacists and all sorts of other vital members of the NHS do all day every day and although as I've highlighted there are problems with the system, really they are minor administrative problems which could be easily sorted out. For all it's problems the NHS is something we should be proud of in this country, it provides vital medication for millions of people every day who in other countries would not be able to access such privileges as regular, routine, free prescriptions and access to their own GP within days for minor problems.
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