Tag Archives: MS

May 10 2018
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My Ramblings

The More You Tell Us We Can’t, The More We Just Might

I don’t know how you guys are doing, but life under our present government is an anxiety-inducing experience of hell for me.

A weird, subversive world where right is wrong and wrong is worse, way worse than you could ever imagine.

And a world where MS is magically reversible because a former A&E nurse says so, after ‘observing’ you for half an hour.

MS. The illness they can’t even find a test for, far less a cure.

Cast your mind back to the last General Election – all those earnest politicians vying for your vote; the couple, the couple with 2.5 kids, the retired couple, the middle-aged couple. Where were you?

Did you once hear our leaders address the 1 in 5 of us who are disabled? I’m a media junkie and I didn’t hear a thing.

I heard about tax relief (I don’t earn enough), inheritance tax (I don’t have enough), and tax in general (I live at sub-poverty level). I heard about ‘hard-working’ families. About ‘hard-done-by-pensioners’.  Disabled people? Nope.

In fact, I was so annoyed, I responded to a BBC Wales tweet and ended up being interviewed, my absolute pet-hate, but the point had to be made. Not that it made much difference.

Our government was simply not listening to people with disabilities, Let’s be honest, few of us will get through life without some form of ‘disability’, so why be so shy about it?

Truth be told, we are simply not media-worthy, and the whole transition taking place from Disability Living Allowance to Personal Independence Payments is just another modern tragedy taking place in every single street up and down the country, but is under-reported on a terrible scale.

Want to know a secret?

Should you live long enough (and many, many illnesses are non-age-specific), you too will be disabled! Yep.

I am absolutely fed up with being ignored by politicians unless we are a good excuse for a photo-op. Some of us are in wheelchairs, some of us are not. Weirdly – we are all different.

Is it fair we have to fight just to get a taxi? Just to keep our job?

In my view, there has to be a backlash soon.

And it cannot come soon enough.

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May 06 2018
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My Ramblings

How Little Is Too Much?

This blog will be six years old in October. Six!

When I first started firing out my random thoughts to the blogosphere, I knew I’d be buried in amongst the millions of other blogs out there.

I just wanted to write, get all the confusing thoughts down, in the small hope that someone, somewhere would understand.

I blogged anonymously, as I was experiencing horrendous workplace bullying due to my MS and had a feeling it would end up as a legal matter, which it did, after I was fired suddenly.

I took comfort in the cloak of anonymity, writing painfully honest posts about anything and everything as me and The Teenager adjusted to a whole new reality. And the reward was an incredible amount of support that flowed back to us. We chewed over problems, discussed different options through comments feedback and Twitter.

In short, my blog became a vital lifeline.

You guys saw me through Alemtuzumab treatment, three times. The subsequent thyroid problems. The weight gain. Adjusting to a more limited but still fun way of living. You generously shared your own experiences and advice about symptoms, getting through my studies, cheering me on all the way.

You also watched The Teenager grow up, which is particularly special to me – as someone once told me, ‘it takes a village to raise a child’, and despite being alone, your input saw both of us through some pretty turbulent times. Regular readers might still remember his School Uniform Protest.

Even though he’s now at University, he still asks me to post this photo or that comment on Twitter – he’s got a following all of his own and I know it means a lot to him.

The blog is now read in over 150 countries, the latest being Rwanda last week (hi!). I’m absolutely delighted. And when people buy my book and tell me it’s helped them through hard times, I grin for days. So many of you have emailed me directly and become firm friends.

Closer to home, and perhaps inevitably, now I blog under my real name, my rambling thoughts are now read by people I know. Which puts a whole different slant on things. It’s the same as leaving an open diary on the table.

Although my recent posts are still personal and open, I’m aware that I hold something back each time. I go so far, then stop. I’ve been mulling this over and over in my mind and am still unsure what to do.

Should I just not worry, go for it, life is short and ultimately, what the hell? Can you be held to account for what you feel? Or should I still temper what I write, creating more even-handed posts?

As always, I’d love your advice …

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May 05 2018
6 Comments
Emotions

Rage Against The Lesion

Lesions, eh?

Little white sinister blobs on our MRI’s, causing untold relapses and despair.

I had a spectacular first ‘proper’ relapse eight years ago and nothing – absolutely nothing – could prepare me for it.

A day trip; a long-planned stroll around shops, and a coffee with a dollop of cream on top with a generous slice of cake in Ye Olde Tea Shoppe afterwards.

The Teenager was away on a rare break, and even though I still had a packet of wet wipes and an emergency box of Lego-themed plasters in my handbag, I was … an adult … for the day.

Or so I thought.

It started on the way there. I couldn’t stop yawning and slumped in the passenger seat, answering my friend with a Danish accent.

We parked up, and I meandered the streets, weaving this way and that, feeling completely spaced out. I floated around with numb, unworking feet and arms, disconnected and, if I’m honest, beyond scared. I fell against walls and tripped over my feet.

I finally found the Ye Olde place we’d agreed to meet at and I sat down, terrified. Something was very, very wrong. The language difficulties increased, as did the sensation of not being of this planet (I know, not that unusual for me, but bear with).

Two days later, I was admitted to hospital with an (eventually diagnosed) unusual lesion on the speech part of my brain. I could have gone in earlier and stayed in for days, but The Teenager was due back within hours and that took complete  precedence over anything and everything. Within a year I had highly-active MS and treatment to match.

Fair play, The Teenager, even after all these years, still does a wicked Danish impression of me. I cannot begin to imagine the impression it left on him at such as young age.

So, lesions. Every day I wake up, I know exactly which ones will come forward and play up. Some are here to stay, the frayed cables permanently snapped – the foot drop, the balance. Some flare under fatigue – the language, the garbled speech, the cog fog. Sometimes they all get together and push me on to the sofa where I spend my days watching clouds drift past my window.

The one I hate the most is the sudden darkness and depression. It descends rapidly – I can be happy one moment and then in the pit of utter despair; I would rather speak with a Danish accent the rest of my life than go through it over and over and over again, a vindictive Groundhog Day I cannot escape from.

In short, it’s awful. It happened just two days ago. That sudden darkness. I’ve tried to learn to just relax in to it – I tell myself it will pass and I will be ok, but it’s so hard.

I know it’s MS and I know it’s a lesion. It’s just a blob asking for attention.

So I try to rage against the lesion. I know what’s happening. But it can take all my diminishing strength to see it pass back in to real life again.

But the bonus? I can still do a wicked Scandi-cop impression …

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May 01 2018
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My Ramblings

Rain? In London?

And so it was that me and The Boss travelled to London last week as he was a finalist for ‘Employer of the Year’ at the MS Society Awards.

We’d planned the entire journey to the millisecond, such is my life now. Coach J of the train, aisle seat, table. Meds packed, walking stick, travel wet wipes, nerves shredded.

Seamless train journey, only one small coffee spill and a tiny smudge of raisin from a health bar on my jumper. Result.

We travelled down the night before (after work for The Boss, the day after a day off work for me – I work to the MS-Timetable). The hotel rooms were wonderful, despite the extreme mood-lighting.

In the bathroom, I looked ghostly, in the bedroom, barely there. The plug sockets were in the wrong place but the toiletries were Elemis, so I snaffled them all discreetly in my suitcase and The Boss went out to buy some oddly missing shower gel and shampoo.

On the morning of the ceremony, I filled up on Bircher muesli and boiled eggs. The woman next to me had four slices of cucumber, a radish and one slice of cheese on her plate. She drank a cup of hot water with six slices of lemon in it and I was full of admiration as I slurped my second Americano with milk.

After a post-breakfast shut-eye, I changed into a suitable outfit, aka Definitely Fat but Hopefully Chic-cy. I mussed my wet hair into curls, slapped on the make-up, mussed up the hair some more (if it falls over my face, it hides the chubby cheeks), got my bag, stick and invite and I was … ready.

I cannot begin to convey how incredible the ceremony was. In short, there are so, so many people doing so many astounding things to support the MS community. From bloggers to carers, from campaigners to fundraisers. Every single finalist deserved an award, and it was heartening to see that the children’s categories had all three finalists win in each; there should be no ‘runners-up’ when it comes to children supporting people with MS – they are all champions, despite the horrendous health and social care obstacles they face.

Sadly The Boss didn’t win. It has to be said though, that he was up against major competition and we were loudly cheering the winners. The Boss was happy as he didn’t have to make a speech (he’s awful at saying more than two sentences in a row without promising a new house extension by August).

However, what a brilliant event and fantastic to catch up with old friends and make new ones. I met two of my media idols, Siobhan Nortan and Caroline Wyatt. I also pounced on Mark Lewis, who some of you may remember from his uncompromising documentary about HSCT treatment.

As we left, the rain started. We found shelter across the road and got speaking to a Danish couple. We (being British) apologised for the rain, but they told us they were ecstatic as they knew London was rainy, and it’s what they came for. Weird.

The next morning at breakfast, Cucumber Woman was nowhere to be seen, so I chose a table next to a large-ish couple and ate two bowls of Bircher, two slices of rye bread and some cheese, all washed down with a couple of mugs of coffee and three glasses of cranberry juice.

The rain hammered down, I took a couple of photos and we left the hotel, arriving at Paddington in plenty of time (of course), so much so that we took the earlier train, whereupon I promptly fell asleep.

I may not be back up to speed yet, and took another day off work to recover after the day off to recover, but The Boss understands. After all, that’s why he was a finalist.

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Apr 23 2018
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Emotions

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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