The people who know the most about living with a condition are the people who live with the condition.AEL Lyons
Right before the first lockdown, way back in February of 2020, I met a woman at a group I attend. The group was for people with Multiple Sclerosis, their friends and family. The group is always light hearted and upbeat. There is much laughter, coffee and cake. Oh yes, there’s plenty of cake.
The group of between twenty and thirty people meets twice a month at a local garden centre, with new people dropping in each month. It’s a place to share some of your struggles, talk about meds and treatment but mostly to meet with people that when they say ‘I know how you feel’, they really do know how you feel.
If you were to pop your head into the cafe, you would see a (sometimes) raucous group of people laughing, drinking and eating cake (did I mention the cake?). You would see the collection of mobility scooters and people in wheelchairs or walking with sticks and you could be forgiven for thinking that disability is not so bad after all.
Well, it certainly depends on the disability, and even within a group of people that have the same disability (Multiple Sclerosis), you will rarely find two people with identical symptoms and two identical experiences. It even varies from day to day – I can have days when I am raring to go, to get a hundred things done, but then there are days when just being up and dressed counts as a win.
So, what does all this have to do with a pre-lockdown meeting with a woman I met?
The woman in question is Annie Lyons. Like me, Annie has MS, and she was looking to write a book about her experiences and what a diagnosis of MS could actually mean. She wanted to interview people at the group to hear their stories about their experiences of living with MS but she wanted to make it a ‘handbook’ for people receiving a diagnosis – what can you expect? Is it all doom and gloom? Do you have to shelve all your former hopes and dreams?
Over the lengthy lockdowns here in the UK, Annie has completed her book, MS: The Beggar We Live With, and it is now available to purchase over on Amazon. She has interviewed many people that have had MS for between two and fifty years, so you know a lot of experience has gone into those pages. This is what the book is about:
This e-book acts as a handbook for people who have received a diagnosis of Multiple Sclerosis (MS), and for the people around them, who can’t think how anyone lives with it. It is a disease which affects about 1 in 500 people in the UK, according to the MS Society. A person’s immune system attacks the central nervous system, causing, or threatening to cause, a whole raft of symptoms and an unknowable amount of disability. When they are diagnosed, many people expect to end up in a wheelchair, and feel that their lives are over. This book is the result of someone who has MS speaking to adults of all ages who also have MS, about what it’s like to live with MS. Some contributors were diagnosed in the last couple of years, and everyone else had been diagnosed for longer, up to over 50 years ago. Questions centred around the impact that MS has had, and continues to have, on their lives, and how they live with it. It is not a medical book, but rather a practical, straightforward handling of the main issues that people face. It explains it in layman’s terms. And it’s a bit sweary.
Here it is recognised that receiving a diagnosis with endless possibilities for type and extent of disability is often devastating. The book acknowledges the fears that people have, the bewilderment, the misunderstandings, and how it affects everyday life. It’s OK to be hacked off. The book talks about diagnosis; worst, or perceived worst, symptoms; finances and the type of problems that people have had, or not had, at work; how it has changed relationships; dealing with doctors, and what people do to help themselves. People fear ending up in a chair, and yet the experience of those who use one tends to be positive. It shows people who are struggling with the diagnosis that people live with it, and still achieve, and that they retain their sense of humour. But it doesn’t pretend that it’s not crap.
The book is presented so that people can easily find the area that they want to read about. It is frank and straightforward, and caters for people who are mourning their former life, and for that reason, provides a little spoon-feeding. giving warnings when the toughest issues are about to come up.
– From Amazon
The book has already received several 5 star reviews:
No subject is off the table but there is strong recognition that everyone’s experiences will be different. There is a positive feeling throughout – that a diagnosis of M.S is not the end, just the beginning of something different.Amazon Review
Tone is light and empowering. Lots of practical tips and resources. Thoroughly recommend it to anyone who has MS in their life – MSers themselves, friends, family, partners, health professionals etcAmazon Review
Would highly recommend a read!! especially if you are recently diagnosed!Amazon review
MS affects over 100,000 people in the UK so there’s a good chance you know someone whose life has been affected by MS in some way. You could do a lot worse than point them in the direction of this book.
Read a preview: