Flash Says…

Archive for August 2011

I’ve just come back from holiday, and I wonder what I achieved or if it was what I wanted.

Usually I mark success by having some great photos to look back on. This started on honeymoon in Iceland and I’ve come to realise I’m happier going on a short walk with a camera in my hand than spending all day in a museum – because I have nothing to show for the museum trip.

My husband and I usually opt for “staycations” but I think we’ve now covered the mainland countries and all cities of interest. There’s something more exciting about going abroad and having to contend with foreign shops rather than picking up a sarnie from Sainsburys, or having to pack a suitcase for different weather than our own (my vote’s for somewhere nice and cold). However, going abroad the costs mount up – especially if we need to hire a car for mobility – and it’s harder to find low cost accommodation if you can’t carry a tent with you. But how can I justify spending a large chunk of my beloved’s monthly income on just one week in our lives?

We went camping. I’ve come back exhausted. My body wasn’t used to a week of Doing Stuff with no rest days, even if I did have lie ins and the odd nap before dinner. Surely holidays are meant to be relaxing? I’ve always been bewildered by people who spend lots of money to fly abroad, then while away every day on a beach. Shouldn’t they be busy Doing Stuff rather than wasting time lying on their back? At last the penny drops. Perhaps I need to start factoring in the odd lazy day without feeling guilty about it.

But I’m not very good at relaxing. I find it hard to do nothing; my brain’s always on the go and if we stay at base I’ll end up infuriating my husband by sharing every thought I have or cadging for another game of cards. And on days when pain has woken me up early, it’s better to keep Doing Stuff as a distraction, even if my capacity is limited.

Well, I did have an easy day scheduled; the last day of our break was due to be spent propped up in front of a stage, but thanks to good old British weather the event was rained off and we had to make do with something more active – and less chilled.

The idea of staying in the UK probably came from the way I was brought up; I remember trips to London and York as a child – long drives to get there with my brother being sick in the car, interconnecting hotel rooms, and strangers babysitting. Days of being dragged around museums because it was “good for you”. But our holidays weren’t that bad – they taught me that I love city breaks and that my own country has plenty to offer. It also made me realise that you have to be very fond of someone before committing to spend time in a small space with them, be it car, tent or hotel room!

Anyway, I’m back: from a week in Yorkshire. I have some wonderful photos from Yorkshire Sculpture Park, some great images of York Minster and some hazy snaps from a boat trip. I picked up postcards from Eden Camp, a booklet at the National Media Museum and drove a mobility scooter around Bolton Abbey. So what if I’ve come back exhausted? I’ve been out with my husband and Done Stuff, and – which is more – we’ve spent a week away from work!

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When I received my diagnosis of hypermobility syndrome in 2008 I began reading up on the subject. Back then, the only book available was written for physiotherapists, but I devoured it and experienced many moments of revelation. Since then, three more books have come on the scene – another aimed at healthcare professionals, and two which are a little easier to read. Here I review them all. There’s also a fifth book which is purely for experts. Bear in mind that I am reading from the perspective of a patient – my last experience with science was at A level!

Before I begin, it’s worth noting what the hypermobility syndrome actually is. Some people are hypermobile, i.e. their joints move further than they should, and for many of them it’s not a difficulty. When this hypermobility leads to a problem such as pain, it’s known as the Hypermobility Syndrome (HMS). This hypermobility is generally caused by collagen disorders such as Ehlers-Danlos Syndrome (EDS) and Marfan Syndrome. EDS type 3 is considered by many professionals to be synonymous with HMS – so you can see the overlap – and potential for confusion! These books are for everyone with Hypermobility Syndrome, no matter what the cause.

Bendy books aimed at professionals

Hypermobility Syndrome: Diagnosis and Management for Physiotherapists (Keer, Grahame) (2003)

This book was a great starter for me: it begins (as do all the books) with an introduction to HMS and the Beighton test for hypermobility. It is clear and easy to understand. Although this book is aimed at physiotherapists (and patients might want to skip over recommended exercises) it is easy to read and leads you through how each area of the body is affected. Sections about HMS in children, adolescents and then adults allow you to reflect on your life – it was full of eureka moments for me as I came to realise that my slow walking as a baby, my bad handwriting in school, and my frequently turning ankles, were all part of the same condition that caused my knee to dislocate.

It is well illustrated – full of pictures that I thought were normal; this led to adventures where I asked my husband to move his joints and realised how we differed! It was the book from which I learned that what was “normal for me” was not at all “normal”. The penny dropped several times as I read on. While that could have happened with whichever book I discovered first, I feel that this one is well set out and although aimed at physiotherapists it is easy to read, and calmly factual. My only issue is that this book addresses only the movement of joints; it doesn’t consider the other issues such as gut and bladder problems which may occur, and for that reason it’s best accompanied by one of the two books aimed at patients. It was, however, very useful to lend to my Pilates tutor so she could understand me and tailor exercises to my needs.

Most importantly, while this book taught me how I was different from normal, it didn’t make me feel that this was a problem.

Hypermobility, Fibromyalgia and Chronic Pain (Hakim, Keer, Grahame) (Sep 2010)

I bought this book because it had my consultant’s name on the cover; I thought it would answer everything about my condition. In some ways I was right; it’s incredibly thorough. However I realised it was a textbook when some sections seemed to have more pages of references than they do of content! It’s a great reference book and the chapter on the physiology of pain is well worth reading, if you can keep up with the terminology. This falls within the first section, on clinical science. The second section on therapy is much more accessible to the lay reader and covers everything from drugs to exercises and from CBT to sleep hygiene.

I’d recommend this book for the more determined expert patient, someone with a thirst for knowledge on their condition, perhaps looking for passages they can quote to their own doctors if necessary. However, I found it hard going in places and certainly not bedtime reading.

Hypermobility of Joints 4th ed (Beighton, Grahame, Bird) (Sep 2011)

It’s worth a quick mention of this forthcoming book, which will be the fourth edition of an existing tome. This publication is clearly aimed at experts, with topics such as “molecular basis of hypermobility” which suggests it is unlikely to be useful to patients unless they are also medical specialists! The high price also betrays that it is a specialist textbook – £90, with earlier editions costing well over £100. For that reason I haven’t bought it, and unless you are a healthcare professional (in which case, it’s worth noting that the authors are highly respected in their field) it’s probably not a useful addition to your bookshelf.

Bendy books aimed at patients

Issues and Management of Joint Hypermobility: A Guide for the Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome (Tinkle) (Sep 2008)

Tinkle’s book differs from the others in that it’s written by an American. When I mentioned it to my consultant he dismissively told me that it had quoted some of his colleagues without their permission, and discouraged me from it. However, I’d already bought the book so of course I would read it!

It is very straightforward, first explaining the types of HMS and EDS and then covering how each part of the body is affected. This means that it does not go into much depth in any section, but there is a broad cover of all systems in the body so it gives a good overview of how people with HMS may be affected.

I found this a very good book to highlight the areas where I was affected and lent it to my mother, so she would get a better understanding of my condition. It would be an ideal starting point for someone with HMS, or a good overview for the parent of a child with HMS, but for detail you will need to tackle one of the books aimed at professionals.

N.B. This book has now been superseded by Joint Hypermobility Handbook.

A Guide to Living with Hypermobility Syndrome: Bending without Breaking (Knight) (July 2011)

The narrative is a combination of Knight’s own experiences, and attributed explanations. This means the reader has to check whether a statement is a fact established by research, or Knight’s own opinion – for example, I’m still not clear on the origin of Knight’s belief that “people with HMS are more likely to experience fatigue … because there is at least twice the amount of effort required constantly just ‘to be’”. Each section is frequently illustrated by quotes from hypermobile people – most of which sound as if they came from messageboards, but are well sourced and relevant to the text.

This book openly tackles some of the issues of living with HMS which others don’t address (or only in a clinical manner) such as anxiety and intimate relationships. I was so pleased to see a book discuss how people with HMS fare in the bedroom – but disappointed that the section was coloured by Knight’s description of a failed relationship. The final sentence begins “I saw no point in continuing to live…” when I was hoping for encouragement!

Because of the mixture of Knight’s experience and that of others, this would make a reasonable first book for people who have just been diagnosed with HMS or a related condition. I think that in particular, teens and young adults would benefit from reading other people’s experiences and realising “it’s not just me”. The difficulty I personally have with this book is that many of the experiences differ from mine so they are not necessarily familiar, or helpful. Also, as I’ve been aware of my condition for three years now, I didn’t learn anything new.

Summary
If you are newly diagnosed then both Tinkle and Knight’s books complement each other and make a good starting point. Tinkle comes across as more factual while Knight shares experience. If you are a teen or young adult, and you want to feel you are not alone – try A Guide to Living with Hypermobility Syndrome. If you are moving past that point of initial diagnosis and would like to learn a little more about how every part of you could be affected – or you’re the parent of a child with HMS, looking for an overview of the condition – read Issues and Management of Joint Hypermobility; that’s the volume I would recommend if you can only buy one. However, neither book will break the bank if you want to give them a try.

If you are already familiar with your diagnosis and your body, and need more in depth information, then pick up Hypermobility, Fibromyalgia and Chronic Pain; it’s useful and very thorough, but more of a textbook and not easy to sit down and read cover to cover. If you consider yourself the “expert patient” then this could be what you need in order to quote to your medical professionals as you find your way through life!

My last blog post drew a few comments to which I wanted space so I could respond in full. So here we are! Tilly and others, here are my responses to your questions including why I don’t carry the Step Free Guide, why I didn’t know about the maintenance, and so on.

Firstly I should say that Transport for London have called me. They were apologetic and recognised that being unable to access the tube step-free at Paddington in the usual manner kicked off a chain of events which went from bad to worse, which could not have been predicted (a bus driver who trapped me in the door, a taxi driver who blatantly took the piss out of me) but were not acceptable. They have said they will learn lessons from my experience. However, there were some good questions raised by readers…

Why don’t I travel with a copy of the Step Free Guide to hand?

I don’t like the Step Free Guide. It contains lots of information I don’t need. If I’m travelling between two or three stations, on a trip I’ve made several times a year, I don’t need to check the access – it’s only useful when planning a route that you’ve never done before. In terms of carrying a printed copy, it wouldn’t have told me about the maintenance (and I wouldn’t have had room for it in my small under-chair box in which clothes were rolled up and secured with a rubber band and so on to ensure everything fitted neatly – it runs to several pages when printed legibly).

What about using Journey Planner to check your trip beforehand?

What, every time? How about when I travel between one accessible station and another, should I really check that they still exist?

Even the caller from Transport for London agreed that Journey Planner is really aimed at people who don’t know the route they will take, and need to look it up. This doesn’t apply to me as a regular traveller, on a route I’ve taken many times before. And in any case I was visiting my mother’s house where there is no phone signal – I’d have needed to consult Journey Planner before I left London a few days previously – at which point the maintenance hadn’t begun and wouldn’t have shown up when I checked!

Had I known about the maintenance preventing me from accessing the tube at Paddington, I wouldn’t have had many more choices. I could have known in advance about the bus trip, and got going sooner rather than spending time exploring options and then needing to rest. That in turn might have meant I didn’t end up on the tube at a busy time, although as my account shows, the tube (when I could get on it) was the least of my worries.

I couldn’t have prevented the need for the bus trip, but when I realised (earlier that day) that I was exhausted, I could perhaps have rung ahead for a minicab. Then again, who’s to say any of them would have quoted less than £42?

However, it would certainly have helped to know about the maintenance in advance and so I would argue that Transport for London needs to do a better job in that regard.

I think TfL needs to do better with their publicity. The previous week, I’d been on the tube recording a trip for Radio 4. We were particularly paying attention to announcements, signage, advice given etc. and there was nothing warning me that there would be no access to Circle and District lines at Paddington for a month. Similarly on day, other than at Paddington there were no signs and the staff said TfL had given them very little and “most of what you see, we did ourselves”. Later, on the tube part of my journey, which included the circle line, I still didn’t see any signage about this.

Perhaps there also needs to be a more permissive policy about providing black cabs for disabled people who are stuck because of maintenance. Current policy is that where one bus route runs between the closed station and the next accessible station, the traveller should use that. Otherwise, London Underground should lay on a black cab for them. In my case I could get a single bus, but I was then a) exhausted from the act of getting uphill to the bus stop b) running late because the bus takes so long c) travelling through an area I didn’t know, so I wasn’t sure when to get off. If TfL won’t lay on a black cab to the next accessible station then perhaps they should lay on a direct shuttle bus, so nobody has to fret about which bus stop to use or how to know when they’ve arrived, and the travel time isn’t extended by too much.

Like everyone else, disabled people want to travel. Sometimes they won’t know the route and will look it up online, at other times they will be very familiar with the journey and will just set out, expecting to complete it. Wayne Trevor, Accessibility and Inclusion Manager for London Underground told me (for Radio 4) that they expect disabled people to know they will face additional challenges and to plan their journeys, which is fine up to a point. But what if I want to be spontaneous? I could just jump on a tube to join my husband for dinner after work, or to see friends. I live in London and there are certain routes that I travel regularly and would never dream of checking every single time I set out – assuming that I had internet access at the time.

London Underground needs to provide better publicity for their maintenance so that we can avoid getting stuck in the first place, but also a more flexible black cab policy if someone shows up, exhausted and stranded.