May 05 2013
8 Comments
Symptoms and Treatment

In The Beginning, There Was Cake….

scrummy yummy cakeSome of you have asked how my whole sorry MS story started, so here is the potted version.

Like many things in my life, it began with cake.

Leaving a friend’s house after enjoying a slice (okay, two slices) of delicious cake. I turned to say, ‘thanks for the cake!’ but it came out as ‘thanks, Kate’. Odd. I tried again. Same thing.

I went home perplexed. The Teenager was away for the weekend and over the course of the next two days my speech deteriorated, I was exhausted and my balance was shot. I knew something was seriously wrong.

I eventually ended up in hospital, talking gibberish. The clues were all there. The overwhelming tiredness over the previous six months, the dodgy walking, the simplest tasks taking forever. Throw in a childhood in Scotland and a parent with MS and I guessed the rest.

I assumed I would be diagnosed there and then (ha!) but that was just the beginning. Until I had a further relapse, I was in Limboland with no idea how long I would stay there. It took a year to hear the dreaded words, ‘highly active/rapidly evolving relapsing remitting MS’.

That year was probably the worst of my life. The lumbar puncture was a vile, medieval torture, the MRIs were terrifying and I lost count of how many blood tests I had. I lay awake at night, rigid with fear, worrying about the future. A lot of people say the day they are finally diagnosed is both the best and worst day of their lives. I agree. After all the waiting, the anxiety, the fears, it was a relief to finally have some answers. But it doesn’t make it any easier.

My main priority was to keep life going on as normal as possible for The Teenager. I would sleep in the afternoons, setting my alarm so I was awake just before he got home from school, duvet tucked away behind the sofa. I hid my anxiety. I became best friends with the pizza delivery man.

Those were dark, dark days. They are behind me now and an uncertain future still lies ahead, but isn’t that true for everyone? And as for cake, well, it certainly hasn’t put me off…

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May 03 2013
12 Comments
Symptoms and Treatment

The Return of The Angry Red Tomato-Face

angry red tomato faceMen in loud-patterned shorts and flip-flops are everywhere, I have a stack of special offer leaflets from supermarkets urging me to stock up on barbecue ingredients and the weather forecasters can barely contain their excitement.

We are having a spell of warm, sunny weather and I am not best pleased. In fact, I am downright grumpy. Two years ago I enjoyed the warm weather as much as anyone, but one day that all changed as my face morphed into an angry red blur, my limbs went weak and I felt faint with fatigue. Since then Uhthoff’s phenomenon, otherwise known as heat intolerance, has made my life a misery.

A tiny spot of sun will add a youthful, flushed glow to my face. Any more than that and I begin to scare small children. I often wish I was born 100 years ago so I could carry a parasol when outdoors and recline on a chaise-lounge, delicately fluttering a fan  and sipping peppermint tea when the heat gets too much. And a bonnet would be ideal for bad hair days.

It’s not just weather that does this – hot radiators in the winter, ‘atmospheric’ log fires in gastropubs and over-heated shops all take their toll. Opening the oven door is a tricky operation. Do it too quickly and I’ve got to lie down for five minutes, pizza sadly forgotten.

I fondly remember giving myself home-made facials by adding lavender to a bowl of boiling water and steaming my face over it. Nowadays that would probably be the best way to make me give up my PIN numbers and passwords.

I am now a semi-vampire, hiding in the house as much as I can and my super-size fan is my new best friend. I have become an expert at judging where any breeze is coming from. I rearrange chairs in cafes when a blast of sun comes through the window.

So this bank holiday weekend, I will mostly be at home. I will not be going to a barbecue – it’s insanity to cook in the heat. I will not be going to the beach. I will not be sitting outside a pub.  I will instead smile through gritted teeth when yet another person says, ‘oooh, lovely weather we’re having!’ Isn’t it just…

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May 02 2013
8 Comments
Daily Life

The MS Lottery Of Treatment And Care

Lottery of treatment and careOn Tuesday I went to the Welsh Assembly in Cardiff Bay to attend the launch of the MS Society’s new report, ‘A lottery of treatment and care’.

After going through security (where I had to remove my belt, very embarrassing for muffin-toppers like me) and picking up my ID badge, it was time to catch up with friends over lunch.

The buffet was excellent, but I was very well-behaved and didn’t sneak a little bag in to take some home, even though I was tempted to swipe a couple of the gorgeous cakes.

The launch went perfectly, my only gripe being that there weren’t enough chairs set out and after standing/leaning for a while, I had to move to a sofa at the back of the room, but I still managed to see and hear everything.

The report is hard-hitting and in places, shocking. I had no idea there were only FOUR neurologists who specialise in MS in the whole of Wales, and they are all based along the M4 corridor in the south. Perhaps this plays a part in the fact that six out of ten eligible people do not take disease modifying treatments. In Europe, only Poland and Romania have a smaller proportion of people with MS taking such treatments.

Of particular interest to me, only a quarter of people with MS who are of working age are employed, compared to three quarters of the wider UK population. My being sacked for having MS highlights the fact that discrimination in the workplace is very real and is still happening, despite a raft of measures put in place to prevent this.

The MS Society is calling on all four governments in the UK to ensure that every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews.

We should all read this report and we should all be angry. Yes, there have been some fantastic developments over the last few decades, but if access to services and drug treatments are limited and unfairly distributed, we need to let the decision makers know.

All of us can do something, even if it’s just signing a petition. We need to keep MS firmly in the spotlight.

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Apr 30 2013
14 Comments
Daily Life

A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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Apr 28 2013
16 Comments
Daily Life

Wheelchair-Unfriendly

wheelchairHow can a large object, weighing around 35 pounds, become magically invisible without asking Harry Potter? Easy – when it’s a wheelchair.

I met a friend for lunch and shopping on Friday. He just so happens to use a wheelchair. Cardiff has a fairly wheelchair-friendly city centre, with wide streets, accessible shops and restaurants and large, open spaces. That wasn’t the problem, it was the people.

To be fair, the shop assistants and waiters were lovely. We went to the Apple store (heaven for him, boring for me) and it was a breeze. Then Paperchase (heaven for me, incomprehensible to him- why would anyone need drawing pins shaped like ladybirds?) and it was great. We had a slight mishap in a cafe when my friend reversed into a table and knocked over a tray full of coffee cups, but those wheelchairs have a surprisingly wide turning circle.

What really annoyed me though, as we were stumbling/wheeling through town were the other pedestrians. It was soon apparent we were inconveniencing them by having the cheek to bring a wheelchair into town. There were tuts and sighs, doors left to slam in our faces, people shoving past us as if we weren’t there. It was impossible to walk/wheel side by side, so I took to pointing wildly at the general direction we were heading in, trying to keep track of where my friend was.

He was nonplussed. He’d seen it all before. He especially enjoyed watching people walk straight towards him engrossed in their mobile phones. He told me he’d taken to scanning metres ahead and had learned to weave in and out of the crowd, but it’s a lot harder to do when you’ve got someone else with you.

He just smiled wryly when I muttered ‘so RUDE’  and huffed and puffed at someone for the umpteenth time. It shocked me. I wish I had been braver and asked some of the people what their problem was. I like a good argument.

Accessibility for wheelchairs may have changed for the better, but attitudes still have a very, very long way to go.

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