Tag Archives: multiple sclerosis

Life Is Short

I spent ten minutes before work this morning planting some seeds that have been hanging around my house for years.

A set of three herbs, complete with three zinc pots and a tray you’re supposed to put on a sunny windowsill (if you don’t have a cat).

Ten minutes previously I’d been lying on my sofa, shattered, buzzing with nerve pain and with a weird flicking tremor in two of my fingers. The usual.

Today was different; it marked the 40th anniversary of my dad’s death from MS complications, at the age of 35.

I’m now 44 and wasn’t even properly diagnosed until I was 37.

Years and ages to one side, living with a chronic, progressive illness speeds life up. The questions and fears you once expected to face in your 60’s become more or less commonplace in your 20’s or 30’s.

The positive side to this is it makes you concentrate on what makes your life meaningful. The flip-side is terror and anxiety. The trick is to outweigh the fears with the joy. Easier said than done.

So today I wanted to make something grow. The herbs might not, but the hope is there and when The Boss picked me up for work, I was beaming from ear to ear despite sadness.

I can’t solve every problem with happy thoughts and actions and I don’t expect life to always look as beautiful as it did this morning. Life with MS is an endless round of awful symptoms I dampen down with medication and a fair sprinkling of Anglo-Saxon language.

Life is short but so are our memories. If anyone has ever broken an arm or a leg, I bet we can all remember thinking, ‘wow, I’ll never take you for granted again, dearest arm/leg’; But we do.

I hope my herbs will grow and they’ll give me a great excuse to make some pasta. And more than anything, I hope I can enjoy every day, no matter what MS, or life, throws at me.

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Always On Call …

The Teenager has always been fiercely independent – give him a phone charger and he’ll travel anywhere, talk to anyone and generally find his own way back home.

He’s settled into University life as if born to it and has found his feet exceptionally quickly.

So I’m always a little thrown by random texts I get from him, at the oddest times.

Take Friday for example. I’d mentioned to him I’d be at an MS Council meeting 60 miles away and staying overnight. There’s a get-together in the hotel in the evening to meet other people affected by MS in the surrounding area and it’s great to see new faces.

I’d settled down on a squishy sofa and was having a brilliant discussion with two lovely people, and , well, whaddaya know – up pops a text at 7.30 – ‘Should I get bleach to clean my toilet?

Umm. Ok. I replied, he indeed should and use it a couple of times a week. I then rejoined the conversation and picked up the thread.

Another text pinged – ‘How do you do it?’

I texted back about squirting it under the rim and making sure he had a loo brush. He did, so that’s good. I should know, I bought it for him along with a million other items on his IKEA Student Survival Shopping List, an event I’m still recovering from.

And that was that. Until the next time.

What the toilet bleach conversation showed me is that you just never, ever, ever stop being an always-available parent. Which is kind of lovely. It’s nice to help fill in the gaps he’s finding as he learns what it is to be an adult, bleach and all.

I like the fact he knows he’ll get a quick answer from me, even if it’s an ‘I don’t know’, as in one of his other texts recently, ‘Have you heard of the band Royal Blood?’ Nope. Or when he just wants to say something, such as, ‘I made chicken katsu curry. From scratch.’ Proud.

When it comes to priorities in my life, he will always come first, no matter what MS throws at me. He knows that even if I’m sprawled on the sofa, virtually unable to move for fatigue, I will make sure my phone is by my side.

Looking back, I can’t say he had it easy with MS. It hit just as he entered high school and we went through some pretty dark times, but we did it. First and foremost, MS was my battle, and I wanted to protect him from the worst of it, as is right. His childhood and growing up feeling secure and loved were top of the list.

So, I love his random texts, his song suggestions, his little remarks about how his latest essay is going. I’m involved in his life, but not overly so and that’s the way it should be.

P.S. Has anyone heard of Royal Blood?

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With Friends Like These …

A BBC journalist has himself been in the news recently.

He is disabled, and quite rightly needs to use a disabled parking space.

So far, so good and I read his article in a weekend newspaper with a keen interest.

Until, that is, he stated that he had never yet seen a disabled person park in them; they all looked non-disabled. To him.

I’ve done some research and his complaint is not new – Boris Johnson even wrote an article citing him and his parking issues back in 2011.

I’m interested in how he can ‘spot’ a disabled person and whether in fact they do, ‘bound(s) out, whistling, remote-locking (their cars) with a backwards squirt of electrons.’

I wonder if, in the interest of his being a journalist, he has ever used his unique position to question these blue badge ‘frauds’. Perhaps strike up a conversation with one of those ‘bounders’?

Apparently not. Which renders his views utterly subjective and not based in reality or fact.

I have every sympathy for this journalist. Of course, he needs the extra space for his wheelchair that a disabled space affords. And, of course, there are many people looking to park in the same spaces as they too are disabled.

Essentially, there are not enough disabled spaces, and therein lies the problem.

So to broadly sweep a dismissive brush over every person he has ever seen park in a disabled space as ‘not disabled’ is breathtakingly insulting.

The Invisible Disabilities Association defines invisible disability as:

‘… symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.’

Can this journalist see pain? Feel fatigue? Heat intolerance? All of which are valid MS symptoms, to mention just one illness that has invisible symptoms.

It’s hard enough being attacked by the Government through punishing benefits ‘reforms’ and not being at all represented in the last parliamentary election, even though 1 in 6 of us is disabled.

So to be attacked by ‘one of us’ (even though he clearly places himself above that) seems particularly harsh.

Aligning himself with the Blue Badge Disbelievers may gain him Brownie points and a few headlines, yet he does us all irreparable damage.

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Really? Was It?

According to the dictionary, ‘gaslighting‘ is a form of manipulation that seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, hoping to make them question their own memory, perception, and sanity.

I remember watching the old 1940’s film, ‘Gaslight’ as a kid, the husband manipulating the wife into believing she was losing grip on reality.

Never has the term ‘gaslighting‘ been more apt than today, when thousands of us with indefinite Disability Living Allowance awards are being reassessed for Personal Independence Payments.

You thought you had MS? Parkinson’s? Think again.

You thought you had problems with balance, walking, cognition? Think again.

You’ve taken the time and immense effort to fill in the 40-page form (which essentially amounts to writing the equivalent of 14+ essays). You’ve endured the stress and fear of losing what is for some the only payment between you and poverty (it certainly is in my case).

You have also probably gone through the extremely difficult process of raking through your life, highlighting just what you cannot do, after years of trying to be upbeat, contribute to the community and in short, remain an active member of society.

Yesterday, I was slumped on the sofa after work, The Teenager slumbering safely upstairs in his old bedroom after a night out catching up with friends, back for the Easter break from University.

Despite my fatigue and pain, I felt proud I was still working and I was still able to maintain our home of 14 years.

However, reading through my PIP Award (never has a word been so misused) Letter, I felt deep confusion. I was reading about someone else. This never happened. I don’t recognise the assessment in the letter, and neither did my witness.

With an illness such as MS, this seems particularly cruel, as the diagnostic process can seem similarly confusing.

For months, years for a lot of people, we try to make someone ‘in charge’ make sense of our random bundle of symptoms. They often don’t hang together well (we all get tired, we all feel a bit buzzy around our feet at the end of the day?).

Even six years after my diagnosis, I still feel like a fraud – how can you possibly describe what it’s like to have MS when so many of our symptoms are internal? And internal, impossible-to-see symptoms are easy to dismiss.

And this is despite me having highly-active, or rapidly-evolving MS, for which I’ve had Lemtrada treatment three times, one more than the standard two. It’s a brutal treatment and not one undertaken lightly.

During my PIP assessment, I was led, confused and upset. Not true apparently. I was well-dressed, confident and happy. Who to believe?

Who do you believe?

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A Date With Fate

People often say, if you think too hard about the best time to have a child, you never will.

It’s the same with car crashes and disabilities.

If you’d asked my 23-year-old self if I had the time and resilience to be involved in a near-fatal car accident, necessitating six months off work, I’d have laughed. But it happened.

Forward 14 years and if you’d asked me on Friday 24th June 2011 whether – as a divorced mother of an 11 year old – I was ready for a serious, degenerative illness to suddenly pop up and change my life forever, I’d have laughed my head off. I had far too much to do, how could I possibly fit it in?

Yet it happened – I went to bed that evening as usual and woke up in a completely different body, one I barely recognised.

The surprise element in these three scenarios can be overwhelming for people like me, who think they knew where they’re going.

Just like that, you don’t.

I often think back to that fateful evening and wonder if I truly appreciated my life, as it was, when I closed my book, fluffed up my pillow and turned out the light. I don’t think I did.

Sure, I had a plan, and it was a good one – possibilities were opening up as The Teenager entered high school and the tethers of childcare were loosening. I would also lose that extra weight, learn how to apply eyeliner and rustle up a mean Martini.

MS hit and I went under. For two years. It was almost as if I refused to believe that it had actually happened. I was grieving for what could have been and what should have been. It was all so … unfair.

It’s only now I realise that it wasn’t so much the MS that rocked my life (**** happens?), but my inability to recognise that life had changed and there was absolutely nothing I could do about it. A bit like the car crash.

Almost seven years on from that day, I am serene, calm and accepting.

Nah, not really.

But – I’m much more flexible in my approach to life, unlike my body, which is often rigid, wracked with weird vibrations and does the strangest things.

So many awful things have happened since MS but none now have the power to shock me quite as much. When life events drop down the shock-scale, it’s rather nice. When MS happens, what can be worse?

Oh, wait, I forgot about The Department of Work and Pensions …

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