Living My Best Li(f)e by Claire Frost

I received a free copy of Living My Best Li(f)e by Claire Frost in exchange for this review. It was published in ebook earlier this week and is out in paperback in September.

Here is the synopsis:

Recently dumped by her boyfriend of ten years, Bell is struggling to move on with her life – and surrender the fleecy pyjamas she’s been living in since January. Haunted by #blessed on social media, she can’t help but compare her life to those she follows online, wondering where she is going wrong . . .

In the world of social media, Millie is the successful online influencer @mi_bestlife. But in real life she’s just a regular single mum trying to make ends meet, while fending off the younger competition and tenacious internet trolls. Her Instagram feed is far more #BestLie than #BestLife, and soon Millie begins to wish her life was more like her filters.

It isn’t until Bell and Millie’s paths cross that they begin to realise what they’re both missing. Can Millie prove to Bell that life online isn’t always what it appears to be? And in return, can Millie learn that she needs to start living for the moment and not for the likes? 

Overall I enjoyed Living my Best Li(f)e. I did find it slow at the beginning and hard to get in to. But it sounded so interesting so I kept thinking “I’ll read a little more” and I was glad I did because I ended up getting quite into it and enjoying the book. I will admit it turned out to be a very different story to what I had expected from the blurb but sometimes that’s a good thing!

It’s a great escapist read for the summer and I loved the fact we got to see both Bell and Millie’s point of view in different chapters. There were a lot of moments that made me smile and laugh and quite a few relatable ones – particularly when Millie goes to an influencer/blogger event early in the book.

A Day at Wimbledon

Last Tuesday my friend Carrie and I went to Wimbledon. She goes almost every year and queues for tickets but it was the first time I had been. I wasn’t sure about queuing so I entered the ballot and I heard about two weeks before that some tickets had been returned and redrawn and I had them. The tickets were for the Ladies Quarter Finals and were for Centre Court.

To be completely honest I’m not really interested in tennis. I am, however, interested in disability sport and really had wanted to go to Wimbledon to see the wheelchair tournament. But when you enter the ballot you can’t specify what you want to see, when you can do or what your budget is. You get what you get. I think that’s a brilliant idea because a lot of people probably wouldn’t book wheelchair tennis but would enjoy it if they saw it. I’m the opposite. I wouldn’t have specifically booked the tickets we got but I did really enjoy it. Even if a lot of people did laugh at me when they heard that.

The wheelchair space I had was on level 5 which was right at the top of Centre Court so we were completely under cover and it was quite hot in there! It was really high and quite far from the action but we were side on to the court so we could see everything that was happening at both ends which was brilliant.

It was a long day and I was exhausted for several days afterwards but it was well worth it. By the end of the day I had been through 5 train stations and on 6 trains – 12 assisted travel interactions – and it all worked really well. The outward was a bit better than the return but at no point were we left wondering where a ramp was or panicking about ending up in the next station because at the points (on the return) that there was no sign of station staff there was on board train staff who knew we were travelling and came to check we were met. At Clapham Junction on the way out our 10 min transfer turned into 3 or 4 due to delays but even though the second train was on the platform when we were waiting for the lift down to it they were still like “you’re going on this.” It’s brilliant when it works well but at the same time there’s a little part of me that’s saying “this shouldn’t be notable. this should be what always happens. I should expect this level of service.”

We saw all of two matches and part of a third. We also had a good wander around the site. I particularly enjoyed the chance to wander and explore the site and all of the little things that were going on like the ladders to adjust the order of play and ranking boards and the grounds staff sweeping courts where play had finished for the day,

Between walking between the station and AELTC (All England Lawn Tennis Club, the official name of Wimbledon) and back and all the wandering around, travel etc I did 7+ miles on my chair that day. A fair amount of it was on a big hill so no wonder my batteries were getting a bit too low for my liking by the time I was home!

The first match we saw was Serena Williams v Alison Riske. They were very evenly matched and it was hard to tell from minute to minute who was going to win. I was very surprised how quick each of the games was though, I had expected more rallying.

The second match was Johanna Konta v Barbora Strycova. That was a much more decisive match although not in the way I originally thought it would be. To start with it seemed like Johanna Konta was killing it and was definitely going to take the match. But after a while she started to make mistakes and it soon became clear (even to a tennis novice like me) that Strycova was actually going to win. It sort of felt like it was so obvious they should just give her the win and put everyone out of their misery.

We went for a drink and a wander after that so missed the beginning of the next match. That was mixed doubles, Andy Murray and Serena Williams v Fabrice Martin and Raquel Atawo. It was fun to watch and I was thrilled to see it but we left after the first set because we would have needed to leave part way through the second and preferred to go before it started.

I would go again but probably not every year. I think if I did go again I would investigate queuing for a grounds pass rather than going for specific tickets. I think the dip in dip out nature of that might suit me more (plus it would be about a 10th of the price of the Centre Court tickets).

All in all, (and despite how tiring it was) it was a brilliant day that was really accessible and very enjoyable. And really was a bit of a once in a lifetime experience – I mean how often do you get to watch such famous people play tennis on Centre Court at Wimbledon?!

Realistic

I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss).

When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely the swelling has reduced as much as it’s going to. No one is saying it’s never going to get any smaller, but the thought is it’s now unlikely and the goal for next time I go to clinic is for things to still be the same – i.e. stable. Which given that heat is known to make lymphoedema worse and when I went last summer my measurements were worse than the time before would be a huge thing.

I’ve known since the very first time I went to clinic in November 2017 that they didn’t expect to be able to completely resolve my swelling and that whatever happened I would need to wear compression for the rest of my life to maintain it. And as much as several of my carers told me how much smaller my legs were and how I was “definitely going to need smaller wraps” in the week or so before, I thought things hadn’t actually changed and I was half expecting this to be the outcome.

I’m fine with it. Things are so much better than they were before I started wearing compression, and I could never have imagined things would have improved this much. If this is it, so be it. I’m more comfortable, transfering easier, significantly less risk of complications and skin breakdown. Time to figure out what maintenance looks like (I’m currently being told I’ll need the same level of compression but my previous nurse told me last year she thought it might be a tiny bit less so who knows).

A few people have heard this news and immediately been pushing me to do more. Telling me how I shouldn’t give up and that I can “prove the lymphoedema nurse wrong.” even when I say that actually I’m fine with this and I don’t want to prove her wrong because this is better than expected one person pushed me again “so, you’ll prove her wrong again.”

But my sitting here saying “this is OK, I’m not bothered if things don’t get any better.” isn’t me giving up, being pessimistic, or negative or any one of a thousand words that me and my disabled friends all have stories of being accused of when we say we don’t want to pursue a cure or can’t do a particular thing, or think a treatment isn’t for us.

It’s me being realistic and recognising that I have done absolutely everything I can and that I’ve been advised to do to manage my lymphoedema. It’s the recognition that the things I could maybe do more of might not achieve any further reduction and if they do are unlikely to improve my quality of life any more.

I realise that everyone is just trying to encourage me and be supportive (and it is people who don’t know me too well who have made the comments). And I know it’s my having lived with CP my whole life that shapes my thinking like that which is perhaps why it’s hard for some people to understand it. But I felt like all the “you can prove her wrong” type comments were putting pressure on me I didn’t need and weren’t what I needed.

As all three of the members of the team I’ve seen have told me managing a chronic condition is a balance and I need to find a way to live my life whilst navigating all it takes to manage multiple disabilities. And that means being realistic and not being upset if I go to clinic next time and things are still stable. Not putting my life on hold whilst waiting for a new treatment, or even a cure that may never come.

Critical by Dr Matt Morgan

I’ve been feeling the need to expand my reading horizons lately so I read Critical: Science and stories from the brink of human life by Dr Matt Morgan. I received a review copy via NetGalley. Here is the synopsis:

Being critically ill means one or more of your vital organs have failed – this could be your lungs, your heart, your kidneys, gut or even your brain. Starting with the first recognised case in which a little girl was saved by intensive care in 1952 in Copenhagen, Matt writes brilliantly about the fascinating history, practices and technology in this newest of all the major medical specialties. Matt guides us around the ICU by guiding us around the body and the different organs, and in this way, we learn not only the stories of many of the patients he’s treated over the years, but also about the various functions different parts of the body.  

He draws on his time spent with real patients, on the brink of death, and explains how he and his colleagues fight against the odds to help them live. Happily many of his cases have happy endings, but Matt also writes movingly about those cases which will always remain with him – the cases where the mysteries of the body proved too hard to solve, or diagnoses came too late or made no difference to the outcome.

OK, so perhaps my describing reading Critical as expanding my reading horizons is a bit of a stretch given that I do enjoy memoirs and particularly medical memoirs but it is different to everything I’ve been reading over the last few months.

Critical was a really interesting read. I had expected more of a standard medical memoir – lots of patient stories and a fair amount about Matt Morgan as a person. Instead we a bit about Matt, some patient stories and a lot of technical information that was well written and easy to follow as a layperson.

I found myself really enjoying the technical bits, especially the history related ones. I was fascinated by the story of Vivi, the little girl in Copenhagen who the first intensive care unit was created for. Reading about the how and whys of the workings of an ICU was also eyeopening.

There is a good balance between all the different aspects of this book, although it might not be the one for you if your interest in memoirs is just about the people. If, however you like a book you can get your teeth stuck into and that makes you think without being stuffy or overly academic then Critical is definitely worth a look. Although different to what I expected from the genre it’s a welcome edition and the time spent reading it was well spent.