Tag Archives: newly-diagnosed

The Darker The Shadow, The Stronger The Light …

limboI’ve had the most incredible week.

Believe it or not, my podgy-moon-face has been in three different films, all raising awareness about MS in different ways.

First up, a video at my local teaching hospital to show trainee doctors a real-life MS scenario. Let’s just say, I hope I haven’t put them off neurology, gah.

Second, a film for The Newly-Diagnosed. Hopefully I came across as reassuring and positive about MS. A tricky place to be as we all have to go some sort of mourning period? I know I did and it lasted well over two years.

Third, me and The Teenager went to London yesterday. I was taking part in a film for World MS Day, about coming to terms with an MS diagnosis and all it entails.

It’s all been busy and illuminating. We went down the day before so we could be calm and collected before Filming. Plus The Teenager has GCSE exams looming next week, so he packed  a bag full of notes and a lot of anxiety. Mind you, all notes went out the window when he spied the massive telly on the wall in our hotel room, conveniently placed in front of his bed. And the chocolate vending machines in the foyer.

Anyway, I met some phenomenal people, all living well with MS. Despite MS? And that’s the thing. We’re all so different. We all have wildly varying MS stories, but we’ve all forged an ultimately positive path.

I’ll be honest, I often feel isolated. I’m a divorced, single parent with MS (get the violins out, meh). Yet there is a wonderful network of people who will draw you towards them, putting an arm around you and tell you, ‘no, you are not alone.’

MS casts a very dark shadows on our lives – on our relationships, our family, our work, our … very being. Who are we now? Now we have MS?

Well, the good news is, if you are in the shadows, there are so many people out there holding out a friendly hand. No one has to go through MS alone.

I remember, back in the Bad Old Days, when fatigue and relapses pinned me to my sofa. I sent out a tweet, ‘I need support’. Well. The support came flooding back. I was never again alone.

And that’s the thing. For all of us who have been through the darkest days, can we light the way for the peeps who are going through the same thing?

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Softening The Blow

BountyI vividly remember trying to rummage through my newly-delivered Bounty Bag minutes before my newly-delivered son tried his best (again) to wake up every other baby on the maternity ward.

The nurse told me he was the noisiest baby they’d seen in a long while and I hoped she was joking.

Anyway, the Bounty Bag. A corporate free-for-all where baby-related companies give you a whole stack of freebies and booklets in order to entice you into swearing allegiance to them for evermore. Some people sneer at them, but for me, living in London without close relatives nearby or friends who weren’t falling out of nightclubs, the Bag had magical properties. Someone, somewhere had been through it before and thought I might just like a few tips.

Ethics to one side (nice try, flogging goods to women who had just been through the hell that is childbirth), wouldn’t it be great if newly-diagnosed peeps were handed a bag stuffed full of information and a few goodies to see us on our way?

From what I’ve heard, a lot of us are in the dark at diagnosis. We’ve probably googled ourselves silly, gorged on doom and gloom websites and come out the other side crying into our cornflakes.

So, here’s what I would have included in mine:

  • Lots and lots of booklets from those lovely people at the MS Society and the MS Trust – sanity in the wilderness.
  • A voucher for a months supply of Waitrose ready-meals. And of course, Dominos for The Teenager.
  • Some posh pillar candles (red-rimmed eyes magically disappear in candlelight).
  • A good few bars of Swiss chocolate. And maybe some jellybeans.
  • A large box of very soft tissues.
  • An expensive throw for the sofa.

Disclaimer: MS is individual to everyone so it makes sense to offer bespoke bags….

What would you have in yours?

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Who Cares?

I went to an interesting and well-organised conference last week which focused on services for carers of people with MS. A whole range of organisations were represented and I went along as I trained as an MS Society support volunteer. I am passionate about newly-diagnosed people and their families having access to services and groups and my role is to signpost them and provide a friendly ear, as someone who has been through the system.

We all met for registration, coffee, croissants and a catch up then went through to the conference. There were some brilliant talks and insights and so far, so good. Then something happened which had me in bits. A very young teenager took to the stage to explain what it was like to be a young carer for her mum, who has MS.

Halfway through speaking, the girl was overwhelmed with emotion and began to cry. The entire room was hushed and stunned. Although she seemed to be supported by some charities, it was clear this was a girl in danger of a nervous breakdown. She went to school after helping her mum and worried the whole day about whether she had fallen or was in need of help. She had been bullied at school too, which research shows happens to almost 70% of young carers. There are 175,000 young carers in the UK, with 13,000 of them caring for over 50 hours a week.

Like most newly-diagnosed people, I was horrified at the thought of my son becoming my carer, and touch wood, I am lucky. I don’t need to ask him for help and although he is aware a I have good days and bad days, I get along with support from my family and friends. With the  Alemtuzumab treatment I had, I will probably not need ‘care’ for the foreseeable future, if at all.

The girl’s dignity and courage was astounding and I hope hearing her plight will spur others to find her more help. Four days on from the conference, she remains in my mind. I feel churlish complaining about my tiredness or weak arms.

If anyone knows a young carer, please reach out. They need care too.

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