Category Archives: My Ramblings

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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I’m A Finalist …

tubeWho would have thought one little line in a blog post would lead to so much?

That’s what happened when I mentioned in passing that I had been refused a taxi at Carmarthen train station, on my way to a meeting (it was a short fare, I offered a decent trip but he didn’t want to lose his place in the queue – of three taxis …)

My post was actually about The Teenager and whether he (and the cat) would survive me being away for one night.

The media picked up on it and long story short, I won the case against the taxi driver, after enduring a gruelling grilling from the Licensing Committee (the driver denied the altercation ever took place – CCTV proved otherwise). It was uncomfortable to say the least and I asked for him not to be punished unduly (this was Christmas, a prime season for taxis). All I wanted was a little more awareness.

I spoke on the radio, appeared in news articles and was filmed at home during a relapse – hence my stunned, pale face. Not helped by the fact that I was wearing a white blouse.

Anyway, I am now a finalist for the MS Awards, in the Campaigner category, and a big thank you to whoever nominated me. I’m due to go to London on Thursday evening, ready for the ceremony on Friday. However, I’m a little wary as, well, um, I’m big. Huge.

I ordered a bunch of clothes off various outfits and split seams, cried and stamped my foot.

I sent them all back.

I ordered more, and miracle of miracles, one of them actually fits me. The size will remain a closely-guarded secret. And so it is, I will be all in black – slimming, lol – mysterious, and, well, slimming, hopefully.

I met a friend for coffee this morning as I’m working from home, so can spread out the paperwork over the whole day. She bigged me up and told me to sail forth and go for it.

I will try my hardest. In the grand scheme of things (a phrase we say a lot in work), does it really matter? The best part of being there will be meeting everyone else – I’ve been to two other ceremonies (yup, I lost out twice before) and really, the people make it. There are so many inspiring, incredible and utterly gobsmackingly amazing people, it’s just a joy to be in their company.

So with that in mind, I will big myself up (lol), push my shoulders back and, um, sail? Does one sail after reaching a certain size?

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Perception Is Everything …

wombleHaving worked the entire bank holiday weekend, I’m shattered and filled to the brim with bricks/wood/steel beam measurements.

Not the best position with an MS-brain like mine.

During this relapse, The Boss has been picking me up and dropping me off for work as my legs go a bit wonky and my head is somewhere in the clouds.

Lovely. Not only do I save petrol, I also cleverly factor in Gumtree pick-ups, such as yesterday;

‘Um. Boss. Y’know years ago we did that job in that street opposite that car place?’

‘Oh, yeah? That was ages ago?’

‘Yeah, should we drive past? See if they did that thing we mentioned?’

He finally twigs. I come clean.

‘S’was on Gumtree. Same road. Free plant pots. Silly not to really?’

And so it was, I picked up loads of free plant pots  on my way home yesterday. Excellent. I had used my powers of innate perception.

I hate my routine at the moment – work, home, work, home. With a relapse, there’s no space left for anything remotely meaningful.

Except random free offers of plant pots. I spent a happy half hour scooping earth I’d bought two years ago into a free pot. There was a worm in every handful. But I was kind of happy.

Perception. I could look at it one way:

Tragic divorced single parent with an incurable neurological illness, nudging late early 40’s.


Exuberant, vibrant, independent 43 year old parent of an awesome Teenager, with an abundance of spirit … and MS’.

I mean me; I’m talking about the same person.

And that’s why I’m trying to re-frame my life – if I see myself one way, people react. The other way, people react. So, maybe I should shove all my sad-person preconceptions to one side and big myself up for once;

‘Fat MS womble, taking on the world?’

I’m embracing the F-Word at long last – Campath-Induced Grave’s Disease be damned …

p.s. this post derives from a random conversation with The Boss about the remote possibility of me venturing in to the dating world again …

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