Tag Archives: multiple sclerosis

If You Can’t See It …

invisibleOne point amongst many brought up during the Taxi Driver Case, is that invisible illnesses can be tricky.

That’s not to say a more visible form of MS than mine is any easier – far from it according to the large amount of emails I’ve received, in which people have told me taxis simply drive past them when they see a wheelchair or walking sticks.

It just seems harder to ‘prove’ you have a disability if, at first glance, there’s nothing ‘wrong’ with you. However, some place the number of people with chronic conditions which could be deemed invisible as high as 96%. Whether or not that is true, it is indicative that there is more understanding needed.

This can take a tragic turn, as in the case of Brian Holmes, who was killed with a single punch in 2013 after another man took exception to him looking ‘like he could walk’ when parked in a disabled space at a supermarket. Little did he know, he was the driver for his wife – who was disabled, and had a blue badge – and who was shopping at the time. What he also didn’t know was that Brian was days away from an all-clear from cancer.

Cases like this show just how difficult it can be to judge who is disabled or not. On the flip side, I live near a busy shopping area; on weekdays, parents park in disabled spaces as they are one or two metres closer to the school than the plentiful other spaces, and ‘what’s the harm?’. On weekends, car after car parks in the supermarket disabled spaces, as they are ‘just popping in, what’s the problem?’ In the morning, builders vans park there, as ‘disabled people are lazy and don’t have to get up early like we do’.

These quotes are real; I’ve spoken to these people. They become aggressive, threatening and abusive. Such are the feelings disabled parking can arouse. Last year I called the school where the majority of parents took their children to. I spoke to the headmaster, who told me in no uncertain terms, ‘it’s not my problem’. I have also raised the point with my MP, who said he would look in to it.

Disabled parking spaces are there for more than convenience. If you are ill and finding it difficult to get out, it can be a smidgen of hope that after the palaver of getting ready to go out, you can just about be guaranteed to find a space. Granted, this is not always the case, but the hope is there. It’s psychological, apart from anything else health-wise.

It’s all too easy to languish at home, constricted by health, lack of parking and society’s attitude towards you.

You make people uncomfortable. And that’s all the more reason to be seen.

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Justice … At Last

carmarthenRegular readers will know I’ve been involved in a case after being refused a short taxi fare in Carmarthen.

Events took a nasty turn when the taxi driver claimed I had lied, which led to the Carmarthenshire Council Licensing Committee requesting I turn up in person yesterday.

I’m not quite sure what I expected, but it wasn’t what followed. After a sixty mile trip from Cardiff, I was shown around the Council chamber before the Committee members arrived. Ah. It looked just like a court room. I was shown where I would sit – all on my own – and then the long row at the front of the hall where the 15-odd Committee members would take their seats.

I was instructed how to turn my microphone on and off, so only one person could speak at a time. Then I freaked. Just a little, but enough for the nerves to bounce around. The members filed in. The case history was read out, including a defence letter from the taxi driver I hadn’t heard in full before.

I was astounded to hear him brand the entire case a ‘fabrication’, which had caused him no end of distress. According to him, I had merely asked for directions, and being the helpful cabby he was, he duly told me. I then decided not to take a taxi, instead telling him I would walk, ‘as it was a nice day’.

I was asked if I wanted to reply before questioning began, so I posed a rhetorical question – ‘would someone like me, with MS, and extreme heat intolerance as a result, decide to walk up a steep hill with a bag and suitcase on one of the hottest days of the year, after an excruciatingly hot and uncomfortable train journey from Cardiff due to a previous cancellation, so two train-loads of people were crammed in to one and there was no air?’

Then the questioning began and it wasn’t pleasant. I was asked to describe the MS treatment I was on, which I did. I was asked to name the date of my last treatment, which I did, although I have no idea why. I was asked to explain how MS affected my every day life. Until I finally cracked and asked why my MS was being so closely questioned. What on earth did this have to do with a taxi driver refusing a short fare? When taxi drivers are formally bound, on being given a license, to agree to take any fare, no matter what the distance.

CCTV images were described to the members. They show a period of almost a minute when I was talking to the driver. A minute is a very long time to hear, ‘up the hill and take a right’. I was seen fumbling in my bag and was asked what I was doing. I answered that I was pulling out paperwork to show the meeting I was going to, then a card I carry in my wallet, which states that I have MS and may need assistance.

Finally, a statement was read out from the receptionist who was on duty at the hotel I was checking in at. She remembered seeing me arrive in a ‘distressed state’ and she had asked me if I needed help. I had explained to her that I had been refused a taxi. Surely this was irrefutable proof? But. The statement ended by saying that after a couple of minutes I went outside.

One Committee member pounced; ‘And why, if the day was so hot, did you then leave the hotel and go outside?’ He sat back, obviously satisfied with his powers of deduction. I asked him if he knew the hotel. ‘Of course’, he answered. I replied, ‘then you know that just outside there are a whole bunch of trees – a beautiful shaded area. Far cooler out there by the trees than inside the hotel? On such a hot day?’

Which took us back to my MS being on trial, not the driver.

Eventually, after being ushered out of the chamber for the members to debate the outcome, I was called back in. They had ‘no hesitation’ in accepting my evidence and that the driver ‘was made aware of my health problems and that his further refusal amounts to a serious aggravating factor’.

One final note. The Committee wanted to suspend him for three weeks. I argued for one. Why?

As I said to the press yesterday, I am not a vindictive person and this was never about punishing someone financially. If I had done, I would have sunk to the level this driver did, when he concocted a web of lies about me and what actually happened. Would I have been a happier person if he had been deprived of three weeks worth of fares in the run up to Christmas?

No. I would have been happier, back in August, if he had accepted my fare. Failing that, an apology and a deeper understanding would have been nice.

Press about this story – BBC and Wales Online. 

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Reframing The ‘F’ Word …

fattyIt’s weird.

I’m more likely to define myself as ‘fat’ than as ‘living with MS’.

Huh?

I’ve struggled with weight gain since I was diagnosed back in 2012 – through a combination of medication, thyroid, stress and comfort eating.

I’m not going to lie, I put my chubby hands up to the last one.

I had a wonderful conversation with a friend on Monday and mentioned that I tell everyone I’m fat, almost as a matter of course. Why do I do this? I mean, they can see it; I probably fill their entire periphery vision in one fell swoop. I’m kinda hard to miss.

She asked me why I did this and I really had no explanation other than I’m so unused to being this size – I’m the biggest I’ve ever been – it’s almost a novelty. A curiosity. To use an unfortunate phrase, is it about getting the elephant in the room out the way?

MS is such a ‘normal’ part of my life now, but being this size isn’t.

I’ve tried to embrace this new body, but found out I really didn’t want to. And I don’t understand this. I’ve met incredible women over the years, through my travels and in the UK, who were far larger than me but happier. Celebrating and indulging wholeheartedly in life in a way I can’t imagine.

Don’t get me wrong, I’m not unhappy, just miffed. More so as I have beautiful clothes hanging in my wardrobe that look a bit silly on me. But do they? Maybe I should stand a bit taller in the mirror and not give a damn about the spare tyre(s) and let my character, my inner essence, do the talking? Isn’t that what life is all about?

I watched an eye-opening episode of ‘First Dates’ this morning (I’m always up early and have ages to fill before work). There was a lovely guy, a tailor on Savile Row. He’d lost a lot of weight a couple of years before but was still conscious and a little overweight. The date went well although he mentioned his weight at every opportunity and you could see his lack of self esteem.

The result? His date thought he was wonderful, but his confidence issues were a turn off.

A great insight. But it got me worried about my potential dating advert, which was already dire:

40-something, divorced, one Teenager, one cat, have an incurable progressive illness – WLTM similar

And fat?

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Please vote For Shift.ms …

shift-ms

An important guest post by George Pepper of shift.ms:

Shift.ms is an online community where people with Multiple Sclerosis can come together to support each other and share practical advice.

A diagnosis of MS often leaves people scared, anxious and isolated. We believe that the best way to combat these feelings is by helping newly diagnosed MSers talk to the people who know best – other MSers. Our community was founded in 2009 and now has over 11,000 members.

We’re currently bidding for funding from the Aviva Community Fund in order to develop an interactive map on our website. The map will help members of our community find other MSers near them so they can meet up, form new friendships and gain invaluable advice and support.

Map.ms will allow MSers to see that they are not alone. An independent evaluation of Shift.ms showed that although members receive a great deal of support online, they would also like to meet face-to-face. We believe that being able to meet up in person will do even more to reduce the mental health problems that so many MSers experience.

Map.ms will allow MSers to quickly find people like them, near where they live, building a deeper sense of community. By plotting the location of Shift.ms members, meet ups and location-specific groups, Map.ms will put the MS community, literally, on the map. Shift.ms takes online safety extremely seriously and has a clear set of guidelines to ensure people do not reveal their home address.

Please vote for Shift.ms in the Aviva Community Fund to help us get the funding we need to build the map. Voting closes on Friday 18th November at midday (GMT), so please take two minutes to follow the link, register, search for “Shift.ms” and cast your ten votes. We think it’s an amazing opportunity for the MS community and we’d really appreciate your help in making it a reality.

Please vote for Shift.ms now.

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What Lies Beneath

hardhatI’m becoming increasingly aware that I’m not really getting away with it at work.

And there was me thinking it would be the dead giveaways – the tripping over every single thing, the fatigue, the balance.

No.

It’s being ‘too well’.

MS, eh?  – you’re never too ill nor too well, eh?

I’ll explain: over the last four years, I have calibrated (shackled) myself to MS – so I now obey MS like a good servant and go to bed early, wake up early (in the dark) and more often than not, fall asleep on my sofa after work. That’s how I deal with the clinical fatigue and nerve pain. And it kills me, I hate it. But …

… luckily, I work for someone, The Boss, who also starts early. Result! Or so you would think. I truck up at 7am, yawning, the first person there, and catch up on a little light University reading. The Boss arrives, we chat over coffee, day begins. I then finish at 2pm.

And that’s the problem.

Honestly, I don’t mind being called ‘Half-Shift’. I can take the jokes, the swearing, the rib-nudging.

As the lone female in amongst upwards of seven blokes, I think I can roll with the punches and to be fair, I’ve developed a thick skin, which can only help me in the dating scene, no? Every cloud.

Plus I can speak knowledgeably upon many subjects, including drainage, tracking down antique architrave and where to source the best windows this side of the M4.

But, because I can hold my own, the shouts of ‘Oyyyyyyy-oyyyy Half-Shiiiiiiiift’ when I leave at 2pm are growing ever louder. And I’m not happy.

What they don’t realise is:

a) I earn less than them

b) Having to lie on the sofa for hours on end is not, NOT, a cushy life

c) I would give anything to have a normal job. One where I didn’t have a pink hard hat

So, yes, my co-workers have a laugh at my expense. And you know, no matter how hard I try to explain, they don’t understand. I’m not saying I want a ‘softly-softly’ approach, far from it. I’m made of far tougher stuff.

But, a wee bit of understanding wouldn’t go amiss? And what they don’t see is:

  • The ridiculous nerve pain
  • The twerking/twitching in my head and arms
  • The dead feet
  • The garbled speech (I cover this well – I’m Glaswegian!)
  • The utter soul-destroying fatigue
  • The endless days I have to take off work to recover from a spike in symptoms

I just wish, for once, they would be chuffed to see a peep with MS, still working, still trucking along. Despite everything. Rock and hard place …

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