During 2020, I wrote a book about living with MS. I decided that the people who know the most about what it’s like to live with a condition are people who live with the condition. So I carried out interviews, asking people with primary progressive, secondary progressive and relapsing remitting about how they deal with it, and how it has affected various areas of their lives. At first, it was going to be a book to explain having MS to people who don’t have it, but after people kept saying the same things to me, I realised that the time around diagnosis could be handled better, so I wrote it particularly for people who are at that stage. But it is also of use to people who are around MS - family, friends, practitioners - to understand better what MS is and what it’s like to live with.
The first edition came out in 2021. At the time, Covid was still the illness de rigueur, and it was taking not only centre stage, but every ruddy stage we could imagine. So of course it got quite a few mentions, but it’s rather been knocked off its perch this year. Of course, while the world has been moving on, so has MS. For a start, there are more treatments available than there were last year. MS is still a swine though, and it still has a bloody silly name that often causes confusion, and is always difficult to pronounce .
I’ve found that as I’ve learned more, I’ve become more interested in the subject, and less scared of it. The second time round, I found it easier to research the sort of problems that I reckon everyone deals with (fatigue, bladder problems, cog fog). It’s such a frightening thing to be told that you have an incurable, progressive condition that will cause an unknowable amount of disability. People tend to think (and it’s not just me, but I thought it might be in the early days) that they will ‘end up in a wheelchair’ and that their lives are as good as over. The book gives a picture of what it’s like to have lived with it, often for decades, and of course people who were diagnosed forty or more years ago are less likely to have received any treatment, because there was nothing available to slow it down. So the prognosis for newbies is likely to be better now.
This is a practical book; it tells the reader about experiences around diagnosis (some of which are slightly horrific); of people’s worst symptoms and how they’re managed (not necessarily what you would expect); of working with MS; of benefits; of relationships, of dealing with doctors, and what you can do to help yourself. It relates MSer experiences, and then tells you where you can go and what you can do in those circumstances. Sarah Thomas-Rowlings of Shift.ms spoke to me, so there is more information about this site than there was in the first edition.There are links throughout; I used reliable sources, so there are no quack solutions, but it saves you the bother of doing the research yourself. There is no way I could have done this in the early days; I remember holding my hands up to my eyes and peeking through them to look at websites. Most people say it takes about a year to get used to the diagnosis, so if you’re new to all this, take heart: it gets better, and it gets easier.
Remember that Leave slogan: ‘take back control’? Whatever you think of Brexit, it was a brilliant slogan, so I thought I’d nick it. This book is a way of taking back control for people who feel like they’re losing it. We were all there once, and people do get out of it.
‘MS: the beggar we live with: Having Multiple Sclerosis and how people get on with their lives’ by AEL Lyons is available on Amazon.
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I used to be terrified of MS, couldn't think how I could live with it, and thought I would always feel like that. When I realised I was wrong, I wrote a book about how people live with it, for people who are terrified of MS and don't know how they are going to live with it.
Facebook: @Ann Lyons