Jul 10 2018
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Daily Life

Seeking Out The Losses

There are plenty of things I have lost since MS.

In fact, looking back, life over the last six/seven years seems mired in loss – partner, job, career, balance to name but a few.

Loss and MS go hand in hand; it’s the endless chipping away of the everyday things, every single day.

Things like swapping glorious Italian-made heeled boots for sensible flats.

Or holding onto a wall in the morning, rather than a handsome peep who doesn’t mind if you eat croissants in bed.

Mind you, I’ve gained a lot too – several stone in weight, a tent-like wardrobe and an unhealthy obsession with weekend newspaper catalogues. Who knew I needed a telescopic thingie for clearing out my drains? I’ll have two. Just in case.

So now I want to focus on positive losses and I started a list:

  • Lose the googling habit – latest being the ‘black holes’ I have in my MRI. Way too many scientific papers to wade through. They’re black holes, and could possibly add interest to my dating profile, aka, ‘divorced, have one Teenager, a weird cat and a good few black holes in my brain (smiley face).’

 

  • Lose the weight. Readers, I have not had rice, potatoes, sugar or processed food for four weeks now. Surely I should’ve been rewarded with a loss? Maybe one stone, give or take? More like one pound. But a loss is a loss. (p.s. how to weigh up the loss of comfort carbs against a one pound weigh loss? Still working on it).

 

  • Lose the hernia, otherwise known as ‘Phyllis’. She’s growing daily and my lovely MS nurses were suitably horrified at its size – grapefruit, going on a small melon. Fingers crossed, I will have an operation soon as well as a tummy tuck at the same time if I play my cards right.

 

  • Lose the doom and gloom attitude. Until the next time. Watch this space …
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Jul 05 2018
18 Comments
Daily Life

The Shock Of The New(ish)

I remember a couple of years ago I was in London, along the South Bank.

It was a place I knew really well from when The Teenager was a baby; I’d walk for miles as he screamed for no reason.

I’d stop at the book stall where he was momentarily distracted by the endless rows of colourful paperbacks, having a coffee at the National Theatre (where he screamed some more), then crossing the bridge and walking past St. Paul’s before making my way home to Shepherd’s Bush.

A couple of years ago, I could barely make it onto the South Bank walkway from the hotel I was staying in. I was stunned and angry.

I had a similar experience yesterday. I’ve taken a taxi to hospital for several years now, despite living very near by. As the driver dropped me off right outside the main entrance, I remembered the days back in 2011/12 when I would park outside the hospital grounds and enjoy the walk.

There is no way I could do that now. When did that happen? Mixed up in having to take a taxi due to parking restrictions, I had lost something.

And it got worse.

From the main entrance to the MS nurse clinic, it was a long, long walk. It took me several stages. What happened? I had my stick, so that helped, as much as I didn’t want it to. There were metal benches dotted along the way and I sank into them and pretended to look at a letter or my phone (no reception).

I was truly stunned. I knew things were bad, just not this bad. My walk has always been wibbly-wobbly since MS. I grab things, hold onto any passer-by (never a single, eligible male, sadly), and bounce off the walls. But this was different.

Despite three courses of Alemtuzumab treatment, there is always that lurking thought that my MS hasn’t quite stabilised (although a lot more than it perhaps should have) but it is definitely getting worse.

Frankly, I’m scared. Is it a slippery slope or will it stabilise? Why does the base-line seem to drop continuously? Am I just getting older? Why does my MS still seem to be rapidly-evolving and highly active?

So many questions. The evenings are getting worse, with the nerve pain ramping up around 3pm. There are many evenings I regret getting rid of the telly in my bedroom.

If I could just sort out the pain in my legs, I’d be happy, but I’m already at the highest limit, 600mg a day of Pregabalin. Arms I can cope with – they simply don’t obey, and I’m used to that.

It’s the legs. My freedom, my everything. I feel like a walking med student map, with all nerve channels coloured brightly and buzzing.

I used to think of MS as a see-saw – treatment, better, more treatment, better – but now it seems like one of those slides kids get stuck on. Good to start with, twig in the way, blip, bit more, then sliding to the bottom …

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Jul 02 2018
14 Comments
Daily Life

Ta Da! Unveiling The Five-Year-Plan …

You know me, I love a challenge.

Over the years I’ve been blogging, I’ve considered learning the saxaphone, finding out how to cook rice properly and going to one of those women who hold coloured swatches up to your face and then let you know if you should wear ‘Summer’ or ‘Autumn’ shades.

None of which has happened, unsurprisingly.

So now The Teenager is making his own way in the world at University (apart from when he’s not, aka the three-month-summer-break-at-mum’s), I’ve got a few pockets of time on my hands. And what better way to fill them than with a PhD. Yup, I’m going for it, even though I’m also gearing up for a PIP tribunal, which is definitely the more terrifying prospect.

It’s quite probably the most ridiculous idea I’ve ever had, apart from deciding all by myself that I’m a ‘Winter’ shade, which makes me look like an eerie Celtic ghoul.

I’ve taken the first tentative steps, sending in a proposal. I found out there are now Postgraduate Loans, for the first time. Karma? When I blogged about it before, you guys were beyond encouraging and that in itself gives me courage.

I would take it over five years, part-time, as I still need to work. It could end in failure, and maybe I’ll walk away with an MPhil after a couple of years, but it’s still an achievement.

And therein lies the nub; I have a great job but no career – I can’t work my way up as the only person above me is Grumpy Boss. I’ve resigned myself to living out my days without a significant other, besides the cat (and I’m half-way to 90 in August, gah).

It’s not about feeling sorry for myself; I’m actually getting quite excited now, the more I look over my proposal (which includes writing a novel with MS firmly at its centre). I just need a focus, another routine besides work and lying on the sofa. Pinballing between the two is bringing me down.

I’m not the most accomplished academic writer in the world, but I’m a trier. The best thing about writing, as opposed to speaking (garbled, often), is that I can delete, delete, delete. Giving myself five years to write a novel means I can factor in the inevitable relapses, the brain fog and the days when I just can’t move.

So now I’m daydreaming a lot in work, during these long hot days when I tuck myself into the nearest shadow and lurk until I cool down. I see myself, pen in hand, fresh notebook page in front of me, jotting down Very Important Points.

If I ever went out in normal society (work doesn’t count, believe me), I would wear a beret and lots of beads. And green reading glasses.

I would look v. v. intelligent, but if anyone looked a bit closer, they’d probably see I was only googling ‘how to cook rice’.

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Jun 28 2018
6 Comments
Emotions

Appealing for sanity?

Well.

I have now, at the last minute, submitted my appeal to Her Majesty’s Courts.

Stuff just got serious.

I got turned down at the Mandatory Reconsideration stage, due in large part to some person coming to my house and writing fiction/ticking off a list about me.

There were lies and then there were the downright lies. It’s one thing to assess my MS in less than 40 minutes (which is bizarre and actually completely impossible), it was another thing to doubt my witness.

So we are both wrong. And probably lying. As it happens, I am going through a particularly difficult MS flare up – not new, happens every couple of months or so (as reported).

Redial back, and after my Mandatory Reconsideration notice, I was willing (if I had the energy) to throw in the towel.

They didn’t believe me.

I had Alemtuzumab treatment, the strongest licensed treatment, at present, for MS. Three times, when we usually have two and that’s enough.

Each course costs at least £30,000.

I have a rapidly-evolving type of MS, hence the aggressive and brutal treatment. Basically, it removes your immune system. Easy?

Not really. Not at all.

And now, in amongst a further MRI to assess my MS, I am awaiting my day in court. And there was me thinking MS was brutal.

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Jun 20 2018
20 Comments
Daily Life

Nolite Te Bastardes Carborundorum

To appeal or not to appeal?

That is the question.

I am tired. Utterly exhausted.

I first got the DLA to PIP forms back in October last year. We’ll soon be in July, and my Mandatory Reconsideration request was turned down, as expected. Over 80% are.

We’re talking almost ten months, to complete one ‘award’. And I’ll be reviewed again in three years.

After their initial assessment, I have been awarded the daily living needs, standard rate. In turn, this allows me to access the disability rates of both Working Tax Credit and Housing Benefit.

If I go to an appeal, there is every chance that could be reduced, and I would lose that access to the other benefits. And then I would be facing homelessness. Despite working.

It’s a gamble, and a huge one.

There’s two ways of thinking. The first, outlined above: take what I’ve been given, live with it and wait to be reassessed in three years, when no doubt my MS will be worse and at the very least I’ll have a ‘proper’ mental health diagnosis. Which annoys me as I’ve been proactive by seeing a counsellor for years, yet to the DWP, it is meaningless.

The second way is to apply for an appeal and hope that the panel will understand the intrinsic and very complicated nature of MS.

The new 20 metre rule makes matters even more difficult. It used to be 50 metres and it’s a cause being championed by the MS Society right now.

I would invite anyone from the DWP to my house from around 2pm onwards, to witness my struggles. The evenings I don’t cook. The evenings I spend lying on the sofa. The evenings when the nerve pain is beyond comprehension, despite being on 600mg of nerve pain medication a day, the highest sanctioned for MS. Where to go from here?

For me, the sticking point is the lies. Fair play, if the assessor saw me on a ‘good day’, I could understand her comments, which have been faithfully regurgitated by the person looking in to my Mandatory Reconsideration (who hasn’t met me). She didn’t.

It galls, a government department, coming in to my house, sitting with me and a witness, then writing absolute lies – in fact, it is seriously messing with my mind. I was there. I know what happened.

So here I am, not knowing quite which way to go. Stay safe, yet insulted. Or fighting my corner, with every chance I could lose my house of the last 14 years.

I work. I’ve raised a teenager on my own since he was a baby and now he is in University. And I’m dealing with MS. I’ve not given up.

I think they actually want me to.

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