Speaking MS at The October Club

OctoberClub2017-002On Wednesday I spoke to a room of 400 people. About my experience of MS. At the Savoy. When I started this blog I did not see that coming…

The MS Trust were chosen this year by The October Club – founded in 1987 by a group of City workers, their annual dinner raises funds via a live and silent auction. The focus of the MS Trust was on advanced MS, that scary destination I’m likely headed to, having been diagnosed at 16, where you’re too disabled for drugs to make much difference, and need a lot of help. The dinner this week raised £500,000 for the launch of a new programme to fund six  Advanced MS Champions over three years.

I’m so hugely proud to have been a part of the evening, the biggest public speaking I’ve done by about 350 people, on a sensitive topic, for such a brilliant charity. I didn’t cry, one of my concerns ahead of the night. I had my speech on my lap to pre-empt the brain freezes. I guess one silver lining of being in a wheelchair is that I didn’t need to worry about tripping over. I, along with Yeoman Warder and Natasha Bunby, had filmed a short video to set the scene too – although as that was playing pre speech my right arm was having a complete MS breakdown and seizing up (stress is a trigger, I should’ve seen it coming). The evening is a bit of a blur of nerves and adrenalin, but speaking at the Savoy is definitely going down as a life achievement. And true to form, no amount of anxiety could put me off the incredible dinner.

As I said on the night, my approach is to always say yes to opportunities, as you don’t know if there’ll be another chance, and you have to do things while you can. Although that’s true for all of us, having MS makes it a more immediate reality, which I’m always conscious of.

Full speech here. (Ish… sure it changed a lot on the night)

The tiredness from the last few weeks is still there, but the lift from Wednesday stirred some proactivity in me and I’ve made a GP appointment to review it. I’m counting that as a (small) victory too.

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‘I’m fine, just tired.’

‘Are you ok?’ ‘You look pale, are you well?’ ‘How are you?’… ‘I’m fine, just tired.’ 

That’s been my opening conversation now for a month. I’m exhausted. And I’m sleeping like a log, keeping weekends clear, eating well, and still just about carrying on. And I’ve been emotional, tearful and feeling low. Is that caused by the tiredness? Or the other way round? 

I tried to tackle one problem and looked up local counselling. My county neuro centre gave me really good psychology sessions about 3 years ago so I rang them: 18 week wait. I’m bloody hoping that in 5 months it’ll have passed. I contacted private psychologists, obviously they’re not wheelchair accessible. I don’t have time or energy for more, I’ll probably feel fine after some rest. 

‘Are you very busy at the moment?’ my MS nurse asked me. Well, I moved teams recently at work, but an internal sideways move isn’t exactly running a country. I’m super excited to be involved in campaigns with the MS Trust and MS Society at the moment, but as you’d expect, they’ve been pretty considerate and not imposing deadlines on me either. 

‘Are you sleeping enough?’. Last night I got into bed and put a podcast on for 15 minutes with a sleep timer. I didn’t hear the end. My care hours are fixed and give me 9 hours sleep a night. One day this week I was in tears just being forced out of bed after that. I can’t physically need more sleep, rest is making no difference. 

My email inbox, to do list, and WhatsApp are overwhelmingly unread. I’m struggling to do the minimum. I’m just run down. I’m writing this from my Tysabri hospital chair – my MS nurse has just sent a blood sample for a thyroid check. That would be an easy answer. But I know it’s probably going to be a more muddled MS/fatigue/seasonal/mood related effect which there’s no easy fix for, just giving it time. 

Why vampires don’t use wheelchairs

The home of vampires: Transylvania, Romania. Ideal location for a road trip holiday, not for the gothic links, but for the gorgeous landscape. I mainly love exploring places a bit less common and off the beaten track. The downside of this of course, is that these places are normally not the most accessible.

As always, my fantastic friends did a stellar job of lifting and pushing me round, but it wasn’t easy, and the 30+ degree heat obviously did wonders to any strength I usually muster. However, what Romania lacks in infrastructure is made up for by the people. Without a common word of English or Romanian between us, strangers would still join in to lift my wheelchair over steps or up steep hills (bonus, lots of them attractive guys, the man bun is big in Romania right now). One lovely English speaking girl wanting to visit the U.K. asked me if British people hate Romanians (hence Brexit), pretty heartbreaking, and as actually I think some do, my answer recommended she visit London, Manchester or Scotland.

Anyway, the sights:

  • Salina Turda – a salt mine with underground lake and light installations… so I’m told. The website describes a lift, the entrance has disabled parking and ramp, but turns out you still need to climb down 70 stairs to GET to the lift.
  • Sovata Bear Lake – gorgeous salt lake in the trees, pretty accessible to get lakeside – steps in and out though (again locals helped out). I swim once a week and assumed once in I’d be fine; swimming in salt water is waaay harder, my legs were being dragged about in all directions until a local lady (via mime) lent me her rubber ring float.
  • Prince Charles’ Castle – A fan of the area, Prince Charles owns a castle which has been converted into guesthouses. Shockingly, it’s not accessible. I wrote to his office to raise the issue and got no reply. Poor show.
  • Brasov cable cars – this town next to the Carpathian Mountains, a walled citadel, is worth the drive. We were also lucky to be there the weekend of a food festival in the park; really pretty town with a vibrant young atmosphere. To get the best views there’s a hillside cable car… with steps to get up to the base, it’s a no go.
  • Bran aka Dracula’s castle – I’d emailed them in advance, to which they asked when I was visiting and told me they’d help and that I could see some but not all parts. There is a long steep path up to the castle, impossible for me even without hoping to get into the rickety stairways inside. Not surprising really, I didn’t imagine Dracula living in an open plan penthouse with stair lift, their emails just missold it..

Great trip, beautiful country, but outside the city of Cluj in the real Transylvania, it’s not an easy ride.

 

 

 

 

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I’ve entered a new decade, and crossed that point upon which so many expectations were balanced until now, the “When I’m 30 I’ll have life sorted” logic. I certainly thought I’d still be walking at 30, but was forced to accept otherwise 3 years ago. Re-reading my blog from my 28th birthday I realise how much harder my life was then. I was still hanging on to so many ideals and plans set for myself in my early twenties, and maybe it’s the wisdom that comes with age, or having moved to my own place, or just getting used to being in a wheelchair, but actually, 30 feels… fine.

Make no mistake, I still get unwelcome flashes of my parallel healthy self. The image of how she’d be living hits me like a plank to the head and can leave me in tears. I hate MS and it’s alterations to my life, from the constant compromises to the major life choices – it feels like being fished out of an ocean and dropped into a test tube: your scope is limited. I’m not sure that feeling will ever pass, but it’s not the constant turmoil of a few years ago. In fact, worrying about progression and losing the travelling/city life/marriage/kids was worse than the reality. Maybe I’ve just forgotten what I’m missing but whatever, being angry and upset every day is exhausting, and I don’t miss it. In hindsight I think I stayed living in London too long, constantly jealous of the young high-achievers surrounding me (disability aside the 24 hour opportunities force permanent FOMO). And the truth is that life, whether with a serious illness or not, is not as simple as it seemed 10 years ago. A lot of my peers with everything on paper find problems, and I’ve got perfectly able friends whose lives haven’t worked to plan either.

So at this moment, right now, things are okay, turning 30 wasn’t that scary, and I’m relatively pragmatic. But it’s MS, tomorrow I could be in tears, and my 31st birthday could hit me with a whole new set of symptoms. The illness forces you to change your expectations, and though I’m not totally there, I’ve got better at accepting it.

London Athletics, and nothing else

IMG_0093I appreciate that history and character are important… but if only we’d rebuilt the whole city for the London 2012 Olympics. I had a ticket for the IAAF World Championships in Stratford last night, a Sunday night so normally off limits as a rule, to avoid exhaustion all week, let alone infrequent trains and travel hassle. But this was easy, the Queen Elizabeth Park was designed and built for purpose, ahead of the 2012 London Olympics. It was so straightforward that I actually didn’t reflect on it until this morning. Normally disability related obstacles shadow all my outings, so the fact access was unremarkable is huge.

With a Blue Badge, you can drive and park onsite (by a quick email and dashboard print out beforehand). There are plenty of spaces, and volunteers on site to direct you down the lifts to one of the many accessible shuttle buses which drop you off right outside the stadium (they also run from Stratford station). It’s all step free from there to your wheelchair space which is a great one. You’re in the middle level of the stadium, no lifts, just in front of one of the disabled toilets, on the same level as the bars, and surrounded by people. As a comparable, at the Millenium stadium in Cardiff, the wheelchair spaces are at the back of the crowd, set apart from everyone else (lest you forget you’re different) so you’re not really in the atmosphere.

So my memories of the night are purely of the athletics, boring right?! I didn’t boo Justin Gatlin (I was going to stay silent but when people started boo-ing actually applauded in offset)… give the guy a break he’s still a devoted athlete. Discovered a love of the Pole Vault. Realised I need to carry my glasses around more. And was in bed pre midnight, brilliant.

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6 reasons why Glastonbury has better disabled access than London

Back from my second Glastonbury post disability, here’s what I realised.

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  1. Disabled people planned the disabled facilities

I’m resigned to calling all pubs and venues before going to ask if they have wheelchair access. But even when the answer is yes, there’s no guarantee; the disabled toilet might not have rails in it, there might be a small but unavoidable step to the bar, or a slightly too narrow doorway. Glastonbury work with a specific charity (Attitude is Everything) to design the access, so when they say it’s accessible, it actually is. Electric scooters are hired out, there’s a disabled minibus to the Park and Avalon in the far corners, all disabled viewing platforms have a disabled portaloo attached (in case you want to do some crazy multitasking of watching a band AND drinking). It just makes sense.

  1. The staff don’t seem to hate you

How many times in London do I see the irritated look in the barman’s eyes when they need to find their fold out ramp that says “This place is busy, we don’t really need your money, and I’m certainly not paid enough for this… can’t you just go somewhere else?”.  At Glastonbury, the staff and volunteers seemed not only to be happy to help, but actually pleased I was there. The team in the disabled campsite charged phones, found emergency tampons, handed out tea, all for donations. And the sentiment is the same throughout the festival.

  1. The public don’t seem to hate you

People are generally polite and helpful (if a bit patronising), don’t get me wrong. Until they’re in a rush and want to get somewhere. Then I’m just an object blocking the way, moving slower and taking more space than anyone else (and obviously, I must have nowhere else to be fast). Sure everyone at Glasto’s in a pretty good mood anyway, but the fact is the acceptance (“You have MS? Will a hashcake help?”), patience, and goodwill comes as a novelty.

  1. Disabled toilets are just that

How many times have I been desperate to pee, waiting ten minutes outside a disabled toilet, for someone to emerge with no apparent disability… normally a furtive ‘sorry’ to me before they rush off, or sometimes they just avoid eye contact altogether. The disabled portaloos at Glastonbury have a padlock on them – the code for it being on your wristband. So when I was queuing for the loo, i knew it wasn’t someone having a nap/doing a dump/having sex/taking drugs in there, and so didn’t mind a wait. Alternately in town, a pub has a disabled toilet, but it’s primary use is a store cupboard, and before I can use it needs a minor refurb.  Bottom line, the disabled portaloos at Glastonbury have more space than a lot of permanent disabled toilets in the capital.

  1. Where parts aren’t accessible, there’s a good reason

Glasto17_1Last year the farm was miles of swampland. So rolling through the far corners was impossible. And no amount of planning can change that. I saw countless people losing their wellies and falling over in the mud – it wasn’t easy for anyone. When I get annoyed is when places could be accessible with just a little planning and investment, but don’t, because it’s London, it’s busy anyway, and they don’t need to. ‘It’s an old building’ I get told… so’s the National Gallery and they manage it. Stop with the excuses.

  1. You don’t feel segregated

The standard I’ve got used to is that there’s some separate route for disabled people. So my friends will be buying gig tickets online but I need to call an access line for one of the limited accessible spaces. We’ll be getting a flight together but I need to check in at a different desk. We go to a restaurant but I need to use another entrance. It’s hard not to feel that there’s a division. For a Glastonbury ticket, you’re online at 9am on the Sunday like everyone else, no better or worse chance of getting a ticket. Then when you’ve got one, you’ve got months to apply for the disabled campsite, hire an electric scooter, ask about all the facilities and help you need. There’s no quota of disabled tickets, you’re not camped miles away from Worthy Farm getting a shuttle bus in. You’re at Glastonbury ‘cause you want to be, and also disabled, it’s no issue.

Congrats to the Glastonbury team, I’m singing your praises, also posted here.

Anger waves

fire 2I’ve largely become used to being disabled (which I think is as good as it gets, I’m sceptical of any one claiming acceptance or happiness with it, but becoming accustomed is doable). It’s only really in the last year, where I’ve felt more chilled out, that I realise how much anger I was carrying before. People expect upset, sadness, a kind of grief for your healthy life but, and maybe I’m a particularly bitter person, it’s the anger that really weighed me down. And I think it’s largely gone. I realise this only when the rage flares back up.

There are plenty of situations where I’m envious of people around me. Most in fact. Someone running for a train and leaping on. People going for jogs after work. Parents balancing babies and bags on their hips. Anyone going to an upstairs toilet. But I’ve generally become more zen. Partly through forcing myself to have some perspective (think kids in Aleppo for a start), partly through years of being coaxed towards mindfulness by different therapists, and against all my cynicism actually finding myself converted.

But now and then, off guard, the anger rises up, and I don’t know what the trigger is. A few days ago I was in Cambridge with my parents, and as we were pulling away in the car, a cyclist went past. A guy, guessing early twenties, with a grey jumper and blue beanie hat. And suddenly I was furious at the unfairness of having MS and my disability. I hated everything about him. I was sure he didn’t appreciate his health and freedom, didn’t deserve it, and even after he had turned down a side street I was still choked up. Why?! I’d been seeing cyclists all day (it’s Cambridge, there are more bikes than cars), and he wasn’t doing some impressive wheelies. He didn’t look like me or remind me of myself, there was nothing special about him. But at that moment, I hated him, myself, my parents, the car, everything.

It takes me by surprise and then takes a while to fade into sadness, familiar loss. The conscious part of my brain then kicks back in with it’s perspective and mindfulness. I remember when my legs started faltering being exhausted by my constant anger. So this is progress I suppose, But whether it will ever completely fade and what causes the waves I’m still guessing.

Disabled dating, a new challenge.

When my MS worsened and I moved into a wheelchair in 2015 I made two resolutions to fulfil by the time I turned 30 (arbitrary I know but it seemed a while away at the time). The first was to find and move into my own place, which, if met, would leave me living at my parents for a max of two and a half years. As I discovered, that wasn’t an easy process anymore, once all the adaptations and social care were added in, so good job I started early. In comparison then, the second, to go on a date; should be the easy one, I’d never had trouble getting interest before, sure being disabled would make it harder, but it could be a truly terrible date, with a guy I never see again to tick the box.

So I installed Bumble. I don’t want any awkward conversations or wasted energy so my profile includes the line “have MS, can’t walk, use a wheelchair”. I generally avoid photos of myself in my chair (I don’t feel it’s the greatest fashion accessory) but found one from a friend’s wedding, I guess it’s not as obvious as it could be but you couldn’t accuse me of deceit.

Encouragingly, some matches come in (on bumble girls have to message first and the man has 24 hours to respond). I’ve made myself a rule to message every match, just a ‘Hi how are you’, I’m not wasting time tailor making intros. So far, 22 matches, 0 responses. I’ve seen my male friends on dating apps: they scan through the photos and make a decision. It’s only when they get the match and message that they actually check the detail, and then, I’m assuming, freak out.

The full story (or lack of) on The Tab.

 

Handi-skiing

I loved skiing. The views, mountain air, speed, exercise, cool clothes, and food and drink culture. I learnt to ski when I was four and it was a regular family holiday throughout my life. I know it’s impractical and sentimental, but my ski boots sit in a wardrobe in my parents’ house – an old birthday present, brown and cream with grey  fur. I don’t expect them to ever be used again, but it’s too sad and final to get rid of them.

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I’m not exaggerating when I say that it was one of the most painful things to lose when I lost mobility. Yes stopping walking and moving around freely is hard in a lot of ways, but a lot of it is a practical, daily struggle that I adapt to. Skiing is not a practicality, no-one needs to do it, for a week a year, it was purely for fun, and giving that up is an extra kick when you’re already down.

I’ve just returned from my second Alps holiday since being unable to ski. The first, two years ago, was when I was walking with crutches, and tried and failed to ski down a nursery slope. I cried on chair lifts and was angry at everyone skiing. My parents paid for me to try handi-skiing, and, unsurprisingly, it didn’t feel the same as skiing and I concluded it wasn’t as good (it’s also more expensive). I know people who have never skiied and loved it, and remember my MS nurse once telling me I could “still ski”, which infuriated me. Would you tell an ex-ballerina she could still dance when she swayed from side to side?!? It’s not the same, there are parallels, but I think hoping for a substitution set me up to fail.

IMG_1735So this year, I had different expectations. I was really looking forward to a family holiday, especially after a busy season at work. I was prepared to sleep, read, eat pastry, and look out at the views from the hotel window. I signed up to four afternoons of disabled skiing, but it wasn’t the focus of the holiday. And this time, it was great. I had a ski instructor who I got on well with, and after crying on him on my first chair lift (there’s no magic wand), the rest of the week was tear free. You’re basically sat in a cocoon which is suspended over skiis, with short ski crutches on each arm. there’s a rail at the back for the guide to use to ski you, so if you’re good (with a core of steel) there’s no rail, and the seat is on one uni-ski. He took me down black runs with him skiing me, and he was stricter about making me do blue runs myself. I therefore fell over a lot, which is normal on a snow holiday, I don’t want to be bubble wrapped. And that forced me to try harder, it was exercise, I was out of breath and exhausted by the end (a half day session is definitely my limit). I’ve accepted I won’t have toned thighs again, and my arms will have to be disproportionate, so was ready to use what I’ve got and save lamenting my old body for another time. We were lucky with weather, bright sun and blue skies, and it was a pleasure to be out in the mountains. It’s larely what you make it, if you don’t have the arm strength or energy to ski yourself, the guide can tour you and take you to view points or pistes you like. For the athletic, you can train to do it yourself on all runs, I’m not sure my balance will ever be up to that, so a mix was perfect.

The lesson is one I’m learning slowly, disabled adaptions will never be ‘the same’ as life pre-MS, and hoping they will is a sure path to disappointment. The truth is, the choice isn’t between handi-skiing and skiing, it’s the former or nothing at all. I’m planning to go again next year.

 

 

 

A drug that’s worked

I’ve got used to my medicated lifestyle, always adding more drugs to my repeatimg_1646 prescription whilst continuing to deteriorate. Muscle stiffness worse? Take an extra kind of relaxant twice a day. Nerve pain? Another tablet. The four years I’ve been on Tysabri have been a bloodbath, but my MRIs are stable, and the familiar reminder from my neurologists is that it’s not a cure, and it would probably be a lot worse if I wasn’t taking it. There’s no better drug available to me on the NHS (within my eligibility criteria set by NICE), and I’m certainly not willing to take a gamble coming off it.

My new neurologist referred me to the National Hospital for Neurology and Neurosurgery in London, specifically to look at muscle stiffness. A guy in my Tysabri ward had told me about the drug Fampyra, but when I mentioned it to my doc, he sensitively told me that it was for people with more mobility than me, specifically to increase walking speed. The consultant at the NHNN started talking about surgery and muscle relaxant pumps. I know it could all help, but it just seems too intrusive at the moment, I was mentally clocking out until she mentioned Fampyra. To qualify I needed to walk ten metres with a zimmer frame. Totally unconvinced I could do it (or even stand up), I moved to the start line. Pure stubbornness kicked in and I dragged myself down the taped line over five minutes; I returned two weeks later, repeating my time and was sent away with the tablets to take twice a day. Three days in and I started feeling I had more energy, transferring in and out of seats was easier, and I actually dug out my crutches, which were collecting dust at my parents’ house, and tried a few metres with them. To be continued on the drug in the UK you need to show an increase in walking speed; general symptom improvements don’t matter, so I was nervous that I wouldn’t qualify. Two weeks later and I was back in the clinic facing the white ten metre line marked on the floor. My speed increased 250%. Not only that, but to give an average reading I repeated it after only a few minutes rest. I was as shocked as anyone.

It works for 30-40% of people, and it’s unknown why it works for some not others (I’ve experience the flip side of these stats in most my other drugs). Let’s be realistic… I’m still pretty disabled and not skipping down hallways. But it’s helped, and it’s the first time, well, ever, that I’ve seen an improvement in my condition. The drug works by stopping potassium leaving damaged nerve cells so letting more signals pass, hence improves a lot of aspects besides walking. My main side effect has been insomnia, which having never had any problem sleeping came as a shock, but that’s bearable. What’s sad is that the prescription criteria are so binary, walking speed is all that counts, regardless of any other benefits.

The best part of this is that it’s lifted my hope in medicine. My urologist started me on Mirabegron about a year ago for bladder urgency which literally transformed my life (I can count on my fingers the number of times I’ve wet myself since taking it). But this is the first drug targeted at my MS and mobility which has had a noticeable effect. My whole family are delighted, it’s been really overwhelming to know how invested they all are (my godmother cried over the phone to my mum when she heard). Mainly though, my cynicism is slightly lowered, with a bit less resentment when I’m swallowing tablets every day, and a little more optimism in new drugs.