The backlash has begun

There's a media frenzy going on here in the UK right now, the press are convinced that anyone on sickness benefit is obviously faking it and is fast turning the rest of the population against us. You only have to read comments left by readers of such press to realise that.

It turns out that everyone on Incapacity benefit is to be re-tested from 2011 (although it's already being trialled in two areas.) The new ConDem government is also targeting those claiming DLA with a view of reducing the number of claimants by twenty per cent.

So now disabled people everywhere are gearing up for more endless appeals and form filling, despite having already been tested (numerous times in some cases) and already having won such appeals. The untrained (by that I mean non medically qualified) staff of Atos even have the power to ignore years of medical evidence and consultants recommendations.

Those of us living with (several) chronic conditions are not going to 'get better.' People with missing limbs aren't going to wake up one morning to find those limbs have miraculously grown back. Blind people won't regain their vision. A deaf person will always be deaf, yet those are the people this crackdown will affect most. 

I am diagnosed with the following Chronic conditions: Fibromyalgia, Myalgic Encephalomyelitis (ME,) Asthma, Irritable bowel syndrome, Non allergic Rhinitis, Constant Migraines, Allergy to dairy produce. I also need B12 jabs every two weeks. 

In the past few months, blood cultures at a local hospital found I also have permanently active glandular fever, that activates itself at the drop of a hat. 

I have been told there is nothing more medically that can be done, there is no cure. Life has become about survival rather than living. 

Gissa job anyone?

At last.

We ended up having to cancel our visitors for this weekend, and delay our trip down south.

However thanks to a friend and her mum, we now have a spare bedroom that's ready for guests. It's taken seven months to do just one room, stripping the paper off, filling the walls and repainting. It's what we in our house refer to as 'micro decorating.'

The relief to have it finished at long last is indescribable, the whole house has been in chaos but we don't have the energy or strength to do it any faster. Five years ago, I'd have had the entire room done in three days, now it takes us seven months, and that's with the help of friends. 

Never make plans

Because sod's law says your guaranteed to feel like shit when the days arrives.

Needless to say we aren't now going down south this week, looks like we'll also have to cancel our friends, who are due to stay this coming weekend. We're both really gutted to have to cancel, we haven't seen them since they got married.

The carpet fitter is unable to come for two weeks, just as well because we've just discovered, the carpet we brought from our old house won't fit the room anyway.

Went to see my GP yesterday, he's given me antibiotics and said to take them sooner rather than later. I feel like I've got the worlds worst flu coming, it's how a flare up always starts. I ache all over, yet my temperature is perfectly normal.

Also been given some new Migraine prevention medication, I hope it works because I get ten days of migraine hell every month.

Flare up time again

The warning signs are all there, shaking, freezing cold, it's all down hill from here on in. Just had a red hot shower to try and warm up but it hasn't helped.

This is the point where people tell me to rest up, I can't there's simply too much for us to do.

We're supposed to be going down south this week, then back in time for friends coming to stay at the weekend. At some point in between we need to find someone to lay a bedroom carpet, get wardrobes built and empty the other spare bedroom. Oh and put up a curtain pole and make up the beds in both rooms.

It's just not going to happen is it? Can't see me being well enough to travel anywhere for a while.

And we haven't even rung the carpet fitter yet.....

Blue disabled parking permits.

There's been stuff all over the media in recent days, about the alleged illegal misuse of disabled parking badges. It's reported that nationwide there are 2.5 million in circulation, apparently over half are being misused.

It's a witch hunt in the media right now, us disabled getting it in the neck again, pick on those less able to defend themselves, sure sign the Tories are back in power. I hope all those idiots that voted Lib Dem now feel thoroughly ashamed of their supposed tactical voting.

So now it seems we are to live in fear of more 'stringent' testing to retain our badges. Yet more medicals, yet more appeals, yet more stress and worry.

The general view in the media is that benefits are easy to claim and remain on, I have to say, that's not my experience at all. Most people I know have had to appeal time and time again, to get the benefits they are entitled to.

Migraine again

Today has been a day full of nothing, neither of us has felt able to do anything. Luckily some friends came over and walked the dog for us. I've been fighting off yet another migraine, whilst my other half slept all day.

I get quite a few migraines, all hormonal linked unfortunately. I've taken three lots of migraine medication since last night, (one more than I'm supposed to) it's at last cleared enough me to function again, just as it's time to go to bed. I hate days like today, feels like a long, slow death sentence.

I'm feeling quite withdrawn from everything at the moment, no particular reason. Not sure what's going on. Don't feel particularly depressed, just very withdrawn and reflective.

Coping

We're a sorry household, my other half was officially diagnosed with CFS yesterday, although thankfully they ruled out FM too. We already knew but needed it to be officially diagnosed, she's had it since having radiotherapy for breast cancer.

I had some in depth blood cultures done a few months back that explained a lot, turns out I have permanently active glandular fever. The consultant explained this is why I keep showing pneumonia type symptoms, and yet never have a temperature. It's basically tricking my immune system in to overdrive.

How do we cope? Some days I simply have no idea in all honesty. I guess we try and look after each other, that and compromise a lot.