Tag Archives: multiple sclerosis

May 10 2016
8 Comments
Media

Can You Afford To Have MS?

moneyIn the news today, Macmillan Cancer Support reports that most people cannot financially afford to have cancer.

They estimate that the illness costs around £760 per month, leaving the average family with a shortfall of £270 per month, due to increased living costs, such as extra travel, support and loss of earnings.

I could be wrong, but I think this pretty much applies to MS too – definitely so in my case.

Even before diagnosis, I had to drastically cut my working hours and now, although my health has stabilised somewhat, MS still throws plenty of curveballs my way, so much so that I cannot ever see a time I will be working 35 hours a week.

When I was really ill, I relied heavily on expensive ready-meals and takeaways instead of my usual prepared-from-scratch meals. I also took a lot of taxis to hospital and back, unable to cope with the stress of driving, parking, fighting with the ticket machine (the one at my hospital is sadistic) and stumbling to my appointments. I would feel tremendously guilty at not being able to do much with The Teenager so I would entice him with an extra tenner here and there to enjoy himself with his friends. It all added up.

So not only do we have to cope with the devastating emotional loss and bereavement any illness brings, we also face the very real fear of losing our homes, our livelihoods and the ability to look after our children in the way we would wish.

As a single, divorced parent (small violin please), I have no partner to fall back on. I have to earn a wage. That responsibility is frightening and keeps me up at night. I joke that most of my furniture is from Gumtree, but I’m not far wrong. I rummage through charity shop racks, putting aside the money I save so that The Teenager can have a few nice brand-new t-shirts. The cat went on strike when I swapped her food to supermarket own-brand but she learned to love the cheap biscuits, although she brings home more decapitated mice nowadays.

What is the solution? Is there one? If we give up work, we’re scroungers. If we stay in work, many of us are made to feel unwelcome and a ‘burden’, needing too many adjustments.

One thing I must mention though, is that the National Health Service remains free in the UK. I can’t imagine how much I have cost the NHS over the last four years. How would I have afforded the cutting-edge disease modifying drug I had access to, if I was living elsewhere?

But what does the future hold? Will we still have an NHS? What will happen when I’m too old to work but too young to retire? One thing is clear, illness is expensive. Can you afford it?

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May 08 2016
18 Comments
Media

Stumbling On A Film Set …

SpoonFedI had an email a couple of weeks ago – would I be interested in speaking to the actors of a new film about MS? The producer was eager to portray an accurate and honest account of the realities of life with MS.

I read further – the actors were Lesley Sharp (from Scott & Bailey, my favourite) and Joseph Mawle who had been in Game of Thrones.

Erm, yes please?

So last Tuesday I found myself in a rehearsal room in London, chatting away to them and the script writer. They asked me an incredible array of insightful questions and I think I did my best to describe life as a person with MS.

On Friday, I was invited back to watch the first day of filming. My book was to be one of the props, so I gave them a copy, where it was placed in a prominent position. My book on film – fame at last! The scene I was to watch was taking place in a support group, with a circle of chairs, Joseph already sitting down and being joined by the therapist, a lovely actor called Jonathan Nyati ( to whom I gave some handy DIY advice).

I had lunch with Joseph in a beautiful sunlit garden (OK, so there were several other people around the bench) and then it was back to work. I wandered around, fascinated to watch Lesley Sharp re-do a scene over and over, where she walked through a door and along a corridor with an unmistakable MS walk. My eyes brimmed with tears; she had nailed it.

The sheer volume of people involved in filming was eye-opening – I counted at least twenty. During takes we had to be completely silent, so of course I dropped my bag with a huge thud by accident. Not my finest moment.

Halfway through the day, I heard my name being called from the other room. The producer was asking me if I wanted to be in the film. Huh? I walked in a daze towards her and she told me I was to be an extra (Woman in the Support Group), entering the room shortly after Jonathan, where Joseph was already sitting. I would then greet them both and take a seat.

Reader. I frantically worked it out. If I said no, I would regret it for ever. If I said yes, I would regret it for a short while. I said yes. I was given a cue, sent out the room and had to count two seconds before turning the door handle and walking in. Well, I did it. About six times (I think they were desperately trying to find my best angle). Where was Spanx when I needed it?

When I had finished, and stopped trembling, I felt brilliant. I had done it. And not only that, I was part of a project which will hopefully increase awareness of MS and the effects it can have. Before we left, I had a great chat with Lesley and Joseph, both of them impressing upon me just how important they thought this project was.

I floated back to Paddington, wondering if I had made the whole thing up. I’ll even have two credits on the film – script advisor and (fat) Woman in the Support Group, aka, Stumbling In Flats playing herself. Do you think I can apply for an Equity card?

p.s. I must point out, the camera puts on three stone …

p.p.s. I must lose said three stone before the premiere …

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Apr 25 2016
4 Comments
Symptoms and Treatment

Take Control, Know Your Choices

1MSg logoThis week is MS Awareness Week and a campaign is aiming to reach the one in five people with multiple sclerosis who are not in contact with specialist services

A multiple sclerosis (MS) awareness campaign, called 1MSg, has launched recently urging people with the condition to ‘Take Control, Know Your Choices’.

The campaign, funded by Biogen and developed alongside clinical experts, comes in response to research which highlights the need for patients to regularly engage with MS-specialist services.

Previous research conducted by the MS Trust, found that nearly a fifth of people with MS had seen neither an MS-specialist nurse (MSSN) or a neurologist in the past year, and so will not have received the comprehensive annual review recommended by the National Institute for Health and Care Excellence (NICE). In addition to this are those patients not currently known to MS-specialists due to not being in contact, those ‘lost to follow-up’.

To help address this issue, the 1MSg campaign highlight the benefits of regular and quality engagement with MS-specialists in order to ensure that people are making informed decisions about their disease management based on the latest information, under the guidance of experts.

The progression of MS can be unpredictable and can vary from individual-to-individual, and therefore monitoring is important.

Dr Martin Duddy, a Consultant Neurologist specialising in MS, said: “I’m supporting the 1MSg campaign because I believe that there are people in the UK living with MS who are not seeing an MS doctor or MS nurse regularly, and who would benefit if they did. The way we manage the condition has changed a great deal. This includes the support services we offer, how we control or treat symptoms, how much we understand about the disease and its progression through technology such as MRI, and what we’re able to offer in terms of treatments to help alter the course of the disease.

The advent of DMTs, I think, has induced a lot of hope in people with MS. In the medium-term, within the UK, we’ve been collecting evidence on whether we see a disability reduction and that is coming through at six and eight years now that people who are on the drugs are not as disabled as they would have been if they hadn’t taken them.

We’re looking long-term, and worldwide, to collect better information about the 10, 20, 30 year outlook, but the first principles in science and some of the early data would suggest that treating the disease actively at an early stage does prevent some of the later disability, so I want to encourage all people living with MS to regularly see a member of their local MS team.”

To learn more, visit www.1msg.co.uk where you can access a wealth of information and hear advice from healthcare professionals, including Dr Christian Jessen, about the importance of engaging with MS-specialist services. You can also watch a video explaining more here.

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Apr 24 2016
8 Comments
Emotions

Gone

goneWay back in the mists of time, when my dad died from MS complications, aged 35, I knew I would always have my mum.

Now she is seriously ill in hospital, and has been for four months.

There’s always that hope, isn’t there, that our mums will shrug any illness off, put the kettle on and give us our full attention.

They’ll bustle around the kitchen, nurturing plant cuttings, swapping local gossip and making us feel like we are the most important person in the world.

Not any more.

For me, it really hit home yesterday. I had been at a wonderful MS Society Council meeting (as a fully-fledged member!), and as soon as the train pulled into the station, I thought, ‘ah, I’ll give mum a call, let her know I’m home safe’. I felt safe just thinking it.

Except I can’t. She’s too ill to really understand.

She knows I’ve been away and now she knows I got back safely but the nuances remain left unsaid. I am floundering. My safety net, that generation above me, has disappeared. It’s me at the top of the tree.

You’d think, that after four months, I would be used to it. Not a bit. It still stuns me every single day. There have been brief glimmers of hope but they have been cruelly dashed.

Next week, I’m off to London, as a finalist for an MS Society award. I’m wholly unprepared – a recycled outfit, untrimmed hair, red face and snagged nails. I’m a mess. It’s been four months of non-stop angst.

I’m absurdly worried that I won’t be wearing a dress – but after my attempts, which have come to nothing, I’m resigned to my black trousers and top. It will be a miracle just to attend the ceremony.

However, in the midst of all the gloom, all the decisions, drama, horror, it meant the world to get away for 24 hours and be amongst an inspiring group of people who just understand.

Perhaps I do feel safe: just in some different, new form.

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Apr 18 2016
5 Comments
Blogging

Fumble? Nimble!

NimbleYou know me, since MS, my hands just don’t do what they should.

I drop stuff. I fumble with packaging. I even need a pair of scissors to open a packet of Wispa Bites.

So when a very nice man called Simon sent me a Nimble in the post, along with a bag of sweets, I was more than a little curious.

The enclosed leaflet promised that the Nimble would let me say goodbye to wrap rage, thanks to it’s clever ultra-hard zirconia ceramic blade. Excellent. I gave it a whirl.

Well. I’m impressed. I’ve never blogged about products before, but this is the exception. I love the back story even more – Simon came up with the idea for Nimble when he entered a design competition run by Bath University, choosing to tackle the problem people like me have with opening packaging, especially in the kitchen.

I tried it on that packaging you get round batteries, thick cardboard envelopes and the horrible shrink-wrapped plastic on The Teenager’s 7-pack of sweetcorn tins. It was a relief not to stab myself with the scissors I normally use. It worked, even though the blade is tiny.

Most importantly, it passed The Teenager’s ‘cool test’. He came home from school one day and found me using it on a multipack of Diet Coke:

‘Wha’sat on your finger?’

‘Ah. This is The Nimble’ – behold.’

(effortless swipe, cans released)

‘Mint. Give us a shot.’

He then proceeded to slice through pretty much everything to hand – my shopping list written on the back of a Special-K box, a sachet of cat food and the cover of a cookery book (thanks for that).

Anyway, don’t take just take our word for it, if you want to try it for yourself, here’s the link to the online store.

Happy Nimbling!

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