the black hole

i am sorry if this is a bit rambly but im currently lying down and typing on fingered as im recovering from yet another one of those horrible nasty fits.


i was having thoughts about that black hole time between initial symptoms, diagnosis and eventual treatment.

For my mental health problems, I had my first symptons at 16, diagnosed at 21 and eventually got treatment age 26. All through this time I was in constant ned of police, ambulance, hospital, benefits, people support etc. My impairment didn't stay in a nice comfy stasis waiting for this treatment, but went to the extreme end of bad, meaning that the first year of my treatment was spent undoing all the bad things that have happened since first symptoms.

and then, moving on to my current situation. If you look at my last 2 posts I have been fitting since the sunday before last. The toll this is taking on my body as well as my mental health is immense. I know that I am also trying to eat better, but a loss of 5 pounds in one week is a bit extreme and can only be put down to the fitting. From what little there is on the internet (ie a sentence) a one minute fit can be the equilant of a days exercise. I am having at least 3 of these, sometimes lasting 5 minutes.

Unfortunately, on discharge the hospital didn't refer me to neurology as promised. They have just sent a letter to the GP to do it themselves. Unfortunately, they wont refer me until they have spoken to me. Unfortunately I have had to go 3 counties away because I realisticly cant be left on my own and this is the closest 24/7 support I can get. Travelling back to home is really hard because I am so exhausted and its quite a way away, plus as I am a stubborn wotsit I dont like relying on other people, and even being looked after is a bit horrible for me.

I feel like I'm in a black hole. The awkard time between symptoms and treatment. I NEED help with this fitting, its having a negative impact on my overall wellbeing, as well as the potential of physical damage from fitting. I can't get anything for this until I get diagnosed and treatment, and yet by being not well I cant realisticaly access these things to do this.

I just hope it doesn't last as long as it did for my mental health problems.

I am really not making it up...

Back story here: http://allbigideas.blogspot.com/2012/06/im-not-making-it-up.html

I don't want to type this blog. It is very hard to admit the reality of whats happened over the last few days, especially in the context of what happened this time last week.

I have more than likely got epilepsy.

That is, I haven't got anything more serious, and from whats been described to the doctors it sounds like epilepsy.

Yes, I have been back to the hospital. A different one this time, with much more success. In that I was believed. I was given a CT scan and admitted over night, and have been referred to outpatient neurology for an appointment.

Unfortunately, until I get properly sorted its still uncontrollable, and I am still having them pretty regular, but at least I am being taken seriously, and being looked after.

I am going to write and complain to the original hospital, with probably even more weight behind me now than before....

But yes, now I am having to accept and face up to the prospect of living with epilepsy.

im not making it up

I'm not making it up. Although to what that statement refers to im not quite sure. Seeing as I have no memory of what im not making up I can't confirm or deny its existance. Apart from the after effects that is.

Imagine the aftermath of an earthquake. Although only lasting a few minutes, the lasting damage and subsequent recovery takes a lot longer to do. And then sometimes the aftershocks are can be just as big and damaging as the original and you have to go back and start again with the recovery.

Its a pretty accurate description of my experience over the last few days. Although my earthquakes are fits and the aftershocks more fits. Everytime I think I am ok I have another  and it puts me back to square one again.

Unfortunately I'v had to say I'm not making it up a lot over the last few days. The sad fact is that I have been taken to hospital twice, (once because I had been fitting for over five minutes) and on both occasions been told i am making it up. If this wasnt worrying enough as it is, to hear this from a nurse, who is meant to be responsible for my care is pretty distressing, and ironically probably causing it to happen again.

Unfortunately its not the first time iv been told this. The last time, it was a paramedic, back in 2004. He caused me to lose all my friends that I had just made at uni. Luckily this time my friends actually believe me, and so did the 2 paramedics and nurse that actually witnessed.

Yes, I have a condition known as non epileptic attack disorder. However, this is a significantly different condition to whats been happening over the last few days. During those episodes I usually black outcompletly and don't actually fit. And it doesn't usually happen in quick succession like these have been. Or leave me so exhausted I cant even walk across the room.

So yes, here I am completely  unsure of whats actually going on, and with the hospital refusing to investigate or take me seriously I am completely stuck. The scary thing is if there is something physically wrong and they've missed it then it could end badly. To even consider the possibility that Im making it up would make me out to be a a very sick person, and probably something that should have been investigated in itself. By hey, I keep saying, I'm not making it up.
(for an update see here:)
 http://allbigideas.blogspot.com/2012/06/i-am-really-not-making-it-up.html

my ESA journey

I made a decision this morning, perhaps some would call it foolish, others brave.

I rang up and actually asked the dwp where my esa50 is. They are going to send it me in the post and apolgised for the delay. I have been on benefit since September so its well over due.

I decided to do this because it puts me in control. I have just finished uni for the year so I have time to fill it in over summer. Its no longer the fear of the unknown, but I at least know I'm going to get the form soon.

I want to write here  about my journey, as I recently blogged (why do we tweet) it will turn this experience from being a personal and nightmarish experience into a politcally motivated and activists struggle for benefits.

If it helps anyone else then its all good, but this is for my personal sanity as well. Feel free comment and stuff, I'm just going to use this blog to journal my experience.

Always complain

Always complain, I wrote a letter of complaint about my treatment on the bus 2 weeks ago. I was travelling on my own, but my bus pass has a +Carer, so if I need to, I can travel with someone else on my pass. The bus driver told me that I shouldn't be travelling on my own with my pass, and his attitude left me feeling really horrible... heres the reply

Why do we tweet?

 If you haven't read this, I recommend it.

http://www.latentexistence.me.uk/sue-marsh-given-wrong-drug-and-nurse-refused-to-change-it-agony-instead-of-pain-relief/

I have only just got to it today, having spent the last week buried under a mountain of essay writing. There was a comment that got to me, and got me thinking. Here is a screenshot..

Basicaly this person doesn't believe that Sue would have access to a phone or tweet in hospital, especially in certain areas.

Having read the tweets it reminded me of a week ago, where I had a very bad experience on the bus.

https://twitter.com/#!/allbigideas/status/199858375981400064


https://twitter.com/#!/allbigideas/status/199864642565177344

I tweeted it, and as the second tweet shows, it was the only way I got through it. By tweeting about it it became political, not personal. It was disablist of the bus driver to treat me like that, and it was wrong. By putting into public it didn't stay within me, but became a part of everyones struggle and another reason why we need to see changes.

Twitter is a fantastically enabling environment. You only need to look at the hashtag #frombedactivism. 
to see why (theres a better hashtag I just cant rememberit). The concept behind this is that even from your 'sickbed' you can still make a difference, your voice can still be heard. Twitter is only 140 characters. If you have to dictate it, speak it, one finger type it, its still possible. You can use a mobile, a netbook, a laptop, a pc, a tablet etc etc. to get your voice heard. It works, you only need to look to spartacus report to see the power of twitter.

As someone from the hardest hit rally that Iwent to last october said in her TV interview... "this is the only thing thats making me feel better, that Im doing something about it"  (1.40)http://s516.photobucket.com/albums/u327/LuciasWoodhouse/Hardest%20hit%20Leeds/?action=view&current=FirefoxScreenSnapz001.mp4

Paying for advice and help when claiming benefits.

I accidentally started an argument the other day, and I was too busy to return to it, however, seeing as it has just become national news again, I thought I would give it a go..

Is it right to pay for benefits advice?

I don't think it is. Purely on principle. I really genuinely believe that at the point that someone needs to claim benefits is a time that they are in a vulnerable position and prone to being exploited. Although I know there are some genuinely decent ways to get benefits advice, someone who has just lost their job, recently become disabled etc. is in no position to work out who and what is decent.

In recent years the citizens advice bearau and similar have become increasingly rare. Thanks to government cuts the trend is likely to continue. These services are funded in various ways, but at the point of delivery they are free.

The people who need benefits advice are those who have had an unfair decision against them, or perhaps even applying for the first time. Money isn't generally something they have a lot of, otherwise they wouldn't be applying for benefits.

To expect them to pay for the privilege of getting a benefit to which they should be entitled to, is attacking the problem from the wrong angle. Surely, instead of is it right to pay for benefits advice, its better to ask, why are people in need of benefits advice in the first place?

Unfortunately, however the government try to simplify benefits it will always be inherently complex. There will always be conditions of entitlement, and always exceptions to the rule, and rules to the exception. Not only will there be conditions of entitlement, there will be other factors motivating the claim to go a particular way. As is the case with the new sick benefits, where the government has time and time again said that they want to reduce the case load. However, it results in stories like this:
http://www.guardian.co.uk/society/2012/mar/19/sickness-benefit-try-avoid-paying

What is even more sickening is the current trend in the jobcentres that results in the most vulnerable being sanctioned because they are seen as 'easy targets'. This coming from a DWP whistle blower in this article here:  http://www.guardian.co.uk/politics/2011/apr/01/jobcentres-tricking-people-benefit-sanctions. These claimants, often with complex needs are being denied benefits for up to six months at a time. It would sicken me further to think that these people who have been screwed by the government would then be denied access to any advice because they can't afford to pay.

I know these things cost money, and I know that has to come from somewhere, but shouldn't it come from the very government who administers the benefits and not the people who need the benefits?

I am against charity too, mainly because it then becomes about the deserving and non deserving.  Benefits advice should be free at the point of need, available to all who need it. Especially with the increase of appeals against some benefits, without some serious investment, or increases within legal aid and other sources of income then people will be forced to pay for a service they desperately need. My question is, what will they pay with?