Category Archives: My Ramblings

Reach Down, Raise Up

MS sometimes feels like a ladder.

Six years ago, it felt like I was somewhere around the bottom, in the murky depths, desperate to get a handle on the slippery first rung towards diagnosis, treatment and, well, ‘thank goodness I now have an explanation for what the hell’s been going on for the last year‘.

I spent hours and hours on the MS Society forums, asking question after question. Patient people who had been there before answered every niggle, every question, no matter how weird it sounded.

They reached down and pulled me up and I will forever be grateful to them for their guidance and support.

Limboland is a cruel place to be; essentially, you wait there in the ‘hope’ you have another relapse and are then moved from a single episode to ‘multiple’. So, you pray to get worse, to get better, because it’s only then that you can access the treatment that will potentially stop the next relapse.

I vividly remember the elated posts from fellow ‘Limbolanders’, ‘Finally!! I’m diagnosed!’ I was envious beyond belief and confused in equal measure. How can you be so happy to have MS?

I soon found out.

Like a magic door opening with a secret code, my eventual diagnosis offered up a myriad of treatment options.

Next week I’m taking a day off work to train with the MS Society as a Support Volunteer. The focus is firmly on the social model of disability, which centres upon choice and control.

I hope to learn skills which will allow me to reach out to pre-diagnosed people and those who are newly-diagnosed; I want to learn how to offer non-directive support and take on board an individual’s unique circumstances without judgement.

I’m looking forward to the course and giving back at least a tiny bit of the support I received all those years ago. If I can ease someone’s journey into life with MS, I’ll be over the moon.

Volunteering often sounds like a massive commitment, and I will be honest as to how much time I can offer, but it could be as little as one phone-call a week, or one quick coffee. Hopefully I will be able to offer more, but if anyone is thinking about volunteering, go for it.

I’d love to meet that one particular person on the MS forums (amongst many others) who took me through, step-by-step everything I asked, with her incredible medical knowledge.

I probably never will, but the one thing she said to me is, ‘if you found help in what I have offered, do the same, when you are ready.’

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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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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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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 nowCoach 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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I’m Hitting The Road …

cuckooThe Boss (aka Best Friend) has been a huge support throughout this whole DWP nightmare.

Every day over coffee, I bore him with the next instalment, picking over and analysing every tiny thing, such as, ‘the assessor smiled at the cat, surely that’s a good sign?’

So last week, when I was munching on a healthy carrot stick (I’m trying) during a break, he asked if I wanted to go to Switzerland. In light of what I know goes on in certain places there, I was momentarily concerned.

I ran through other possible scenarios in my mind – the mountains? The lakes? The clocks and chocolate?

None of these. Did I want to drive from Wales to Switzerland to visit … the Geneva International Motor Show?

Erm. Hmm. I like travelling. It would be amazing to get away. I don’t have to do anything, except sit there, which I’m really, really good at. He’d do all the driving, sort out the tickets, plan the route and all I’d have to do is be a back-seat driver and eat Gummi-Bears. I wouldn’t have to worry about anything for six whole days.

I’m going spare at home, fears and anxiety swirling around my mind. I wake in the wee small hours, wondering how to live on a negative income despite working, how to make four cans of baked beans last a week, whether the cat could adapt to a rice-based diet. I’m in a weird kind of limboland. Again.

The Boss could have said anything – car show, tool fair, fly fishing – and I’d have leapt at the chance, metaphorically speaking. The chance to get away from all this is too alluring to pass up. And now that The Teenager is safely ensconced and thriving at Uni, there’s nothing to hold me back.

Except MS. Comfort zone. Sofa.

However, if there is one positive thing to come out of this whole ghastly DLA/PIP reassessment process, it has made me realise just how home-bound I am and just how much I don’t do any more. From someone who used to hop on planes like they were going out of fashion, I’ve been reduced to watching the clouds pass by through my window, while I lie on the sofa scrolling through Netflix films.

I like the idea of seeing different clouds and breathing in different air. It feels like a stay of execution, but if it’s in Switzerland, maybe I can handle it at a distance.

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