Category Archives: My Ramblings

Home Is Where The Heartache Is …

aloneOur Government is probably completely disinterested to know that since April this year, over 50,000 Motability vehicles have been removed from people with disabilities.

Happy now? Did you claw back that money? Come down hard on those who ‘con the system‘?

Contrary to popular belief, these cars are not ‘free‘; people who qualify surrender most of their disability benefits to pay for them. They have no doubt carefully weighed up the options and decided that independence is worth the financial sacrifice.

It’s no coincidence that Personal Independence Payments arose at the same time as Austerity, aka, The Banking Crisis. Unwilling to blame those who should have carried the can (Bankers), our Government decided instead to target those who played little, if any part in this debacle.

However, at times of financial crisis, it’s always easy to blame the weak and powerless (as history has proven time and again), and our Government, in collusion with the right-wing press, has stoked the rage. How many times can you read the same article about a so-called benefit cheat who is actually a trapeze artist? A mountaineer? A stripper?

Over and over again, the Government perpetuate and encourage these stories – about us – that are simply untrue. Poverty-porn programmes now fill our TV schedules – Benefits this, Benefits that. Cheat, charlatans, wasters.

However, back to those 50,000 vehicles removed. Result? What do you think these families do now? Because 50,00 vehicles equates to at least two people per vehicle, and probably more. So, at least 100,000 people with a disabled person at home now have no access to a car. Or independence.

What do they do? Well, they revert to the bad old days when they relied on a complicated network of favours. So they do less and less as the independence simply isn’t there. They stay at home.

Home should be a safe haven. A place of comfort and family, yet now it is more akin to a prison.

And even there, the claws of right-wing nastiness strikes. I’ve read the comments on social media after every poverty-porn programme – ‘well, they all have massive tellies, they can’t be that poor.’ 

Here’s the thing. When your options are limited, when you’re shoved back into your little box and the door is slammed shut, a TV is a window on a world you simply don’t have access to, and it’s probably being paid for week by week through some money-grabbing company such as Bright House.

The bigger the better – and why not?  All the better to see what we’re missing out on. And it’s a cheap and effective way to educate the kids, to encourage them to aspire for more – look – there’s a world outside of this box we can’t leave, now our car is gone.

Am I angry? You bet I am.

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This Is Not A Joke

a jokeA friend sent me what I thought was one of those online jokes this morning.

Except it wasn’t. It’s real.

I present to you the Department of Work and Pension’s ‘6 Tips for dealing with stress’.

These are the people who will soon determine whether or not I still have MS or if I have been miraculously cured. If cured, I stand to lose what little is left of my disposable income.

So, now that I have a huge form to fill in and am beyond stressed, what do they suggest?

Helpfully, in their introduction, they point out that, ‘too much stress can be unhealthy – around 9.9 million working days are lost each year to stress, depression or anxiety.’ Would that be the same stress, depression and anxiety they themselves are currently putting me through?

Anyway, the first tip is to ‘Address the Causes’, with the unhelpful and rather sinister tip, ‘it’s also important to learn to accept when things are out of your control.‘ Are they actually, seriously having a laugh?

Tips two and three  – Schedule Your Time and Take A Break – basically say the same thing – have lunch outside. It’s that simple. Apparently this can ‘prevent blockages‘ (huh?) and ‘inspire new ideas‘.

Tip four – Stay Healthy (lol) – again, suggests going outside (I think they are slightly obsessed, which is weird as they’re taking thousands of Mobility cars from people, who now cannot go outside).

Tip five – Keep in Touch – build a support network. And laughter is an excellent stress reliever, apparently. So is banging my head against a wall, if only I had the energy.

Tip six – Do Something you Enjoy – basically, do something you enjoy. They suggest reading or gardening.

Well, hopefully after reading these six tips, you all feel a lot less stressed. I know I don’t.

When this government department is snatching lifetime awards for incurable illnesses from people and pushing countless others into poverty, homelessness and worse, it seems callous in the extreme to publish such a flippant post.

Is it me? Am I missing something?

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An Utterly Miserable Phonecall

miserableIt would appear the dehumanising experience of moving from DLA to PIP begins with that very first phonecall.

I received a second reminder letter in the Dreaded Brown Envelope, urging me to call up to start the whole grinding, hideous, unnecessary process.

So, this afternoon after a truly awful day in work, marred by crippling fatigue (my new nickname – ‘GrumpyPants’) , I called to say, yes, I still have MS (surprise!), and yes, it would be really helpful if I could still be allowed by The State to live on very little money.

My call was taken by someone with a semi-robotic grasp of the English language and I frequently had to ask her to repeat stuff; usually the legally-binding agreements they read out to you, followed by a threatening, ‘Do You Agree?’.

I agreed I could be prosecuted, banged up and no doubt hung, drawn and quartered, should I provide false information. Judging by my interrogator, otherwise known as a Call Handler, this may deem preferable.

I had to repeat my National Insurance number five times. A test? Probably. Every so often she would throw in the same question, such as ‘repeat your telephone number’. A test? Probably. I told her she was confusing me.

She asked if I had one of a list of illnesses, including schizophrenia, dementia, etc. I replied no, I had multiple sclerosis. She took absolutely zero notice. Another list of illnesses. Again, I replied, MS. Nothing.

I interrupted her robot speech to ask how long I would have to fill in the forms. She sighed loudly and told me four weeks from when I got my form, which may be in two weeks, but which would be date-stamped with, well, a date. What date? No answer. Confused? Yep.

She asked if I would get help filling in the form. Er, yes? Of course. Who wouldn’t? I can barely write a shopping list, far less fill out an epic and somewhat tragic story of my life with MS.

She demanded to know who would help me. I replied that some very kind people within the MS Society. Names? No. Why is this relevant?

In the end, we came to some kind of an agreement. She, on behalf of the DWP, would continue to terrorise me until I was pulverised to dust and in return I would write out every single episode of my life in which MS gets in my way, shatters my confidence and generally makes me feel less than sub-human.

Begging bowl at the ready …

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Life Under A Brown Cloud …

pityEver since that hideous brown envelope plopped on to my doormat, life is, well, sludgy brown.

It’s remarkable just how much an ‘invitation’ (lol) from the Department of Work and Pensions, to move from DLA to PIP can suck the life out of you.

The days since Envelope Day are passing in a blur of those twin enemies, Fatigue and Fear.

Instead of moving forward in life, I feel I’m now stuck, analysing every symptom, everything I do and everything I cannot do.

It’s like having one of those harsh interrogation spotlights suddenly shining in my face, where I have to prove every single thing, without seeing beyond that light, to who’s sitting behind, making decisions which will affect my life for years to come.

I’ve lost interest in everything I normally love. I go to work (because I have to, otherwise I wouldn’t), I come home, I lie on the sofa and stare at the not-very-interesting splodge on the ceiling. I don’t cook any more. Laundry is building up. I can’t read, so I watch terrible tv. I sleep. A lot.

In work yesterday, I was hit by a wave of the most hideous fatigue, so overwhelming it was painful. I went to the van and fell asleep, my whole body wracked with nerve pain. My hands have stopped working properly and are tingling and numb every day. I can’t think properly. When The Boss dropped me off, I curled up on my sofa and slept for three hours straight.

I’m trying really, really hard to stay positive and to keep hold of a sense of who I am and the person I have become since being diagnosed with MS, but this experience is pushing me to my limits of endurance. Do you ever get that feeling you just want to lie down and say, ‘ok, ok, I give up, I tried, but I’m so tired of this, you win’?

I’m edging backwards to the terrible and soul-destroying Pity Party for One I held shortly after my diagnosis and I can’t seem to stop it. Going forward is not an option at the moment.

I’m clinging on to my old life by the skin of my teeth. I can live on very little money and still be happy. I’m inventive, a Womble, and quite happily make do with charity shop clothes and second-hand books.

When even that is under threat, what’s next?

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London …

londonI ♥ London.

The Teenager was born in London and the city always holds a very special place in my heart.

So to travel down there for the MS Society Awards as a finalist in the Campaigner category was wonderful.

Sadly, The Teenager was studying, so I took my Boss and best friend, Tony, as my companion and human walking stick.

The event was to take place in County Hall, overlooking Parliament and right next to the London Eye. The location could not be more perfect – our hotel was just a few metres from the venue. We travelled down the night before and wandered around the banks of the Thames, ending up in a little Turkish restaurant.

The next day we had coffee at the South Bank Centre and then got ready for the ceremony. Or, I did. The Boss went for a walk, I panicked about my outfit, my weight, my balance, my eyelashes.

Anyway, when we got there, nothing else mattered except for meeting the most incredible people. Truly, the Awards are amazing. There was a chance to catch up with most people beforehand but there just wasn’t enough time until we were called in to lunch, and the Awards.

Reader, I didn’t win, but to be a Finalist is a prize in itself. I felt as if I was floating on air and to make it even more special, Lord Dubs was on my table. The Lord Dubs.

Back in the hotel, I changed in to jeans and comfortable shoes and made a wibbly beeline for Foyles, the bookstore. I bought a couple of books and literary magazines (half of which are waaaay beyond me), and snaffled a few of the free bookmarks. We had a drink at the theatre and wandered back to the hotel before collapsing from exhaustion.

I love London. I love the buzz, the energy, the thrill. But, when I could barely walk down the South Bank without help, I knew times had changed. It seems like only a few short years ago that I would take my newborn/toddler on endless walks down the same streets. Miles and miles and miles. And now, it’s metres before I grasp the nearest arm (usually The Boss, sometimes a complete stranger).

And now I am back home, exhausted, thrilled and filled to the brim with emotion. The Awards may showcase the finalists, but there are so many of us living day to day with MS. We are all finalists, winners, whatever you want to call it.

I may not be a winner, but I will still speak up, speak out and speak loud about the inequalities we face on a daily basis. The most heartening story I heard was that when I was speaking about employment discrimination last year on the radio, someone called in to say their employer was brilliant. That same employer won an MS Society award on Friday…

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