Tuesday, 18 January 2022

Book review: 'Me Before You' by Jojo Moyes | *Spoiler alert*

Front page of a book. Large text reading the title 'Me Before You'. A black silhouette of a woman releasing a bird into flight. Below is the authors name 'Jojo Moyes' dotted around the image are quoted reviews of the book.

Rating: ★ ★ ★ ☆ ☆ 

The plot of the story is basically Lou, a young woman in her 20's who is looking for a job after the café she worked at closed down. After many failed attempts at finding new employment Lou takes on a job caring for Will who became a quadriplegic after being hit by a motorcycle. Following his injury Will struggles to adapt to becoming a quadriplegic.

It's a romance novel, a genre I'd never read before. If I hadn't of heard Jojo Moyes sharing that it was a romance novel in an interview with her at the end of the audiobook I wouldn't have instantly put it down to be a romance novel. Saying that though there was an element of romance as Lou and Will over time grew feelings for each other as the story unfolded.

I think the author got it sort-of accurate on Lou's perspective as she get's used to caring for someone with a disability as someone new to this type of work. For example how at first Lou and Will struggle to connect with each other and Lou getting used to taking on a care work role such as managing Will's medications and the complexities of his health and how she feels unsure of what she is doing. Then on the flip side Will getting used to having Lou as his carer. I also feel that the author did her research on the affects of spinal cord injuries and also their care needs such as at one point in the book Will develops a fever and due to his injury he is unable to control his body temperature and required medical intervention.

I think the author got it accurate sort-of such as how at first getting used to having a new carer and also for Will how it feels for him needing someone to do so much for him and the loss felt when you become disabled which I could relate to. As well as this the emotional response people have towards their acquired disability. I think it was positive how Lou tried to show Will that there’s a life you can still live when you have a disability.

Despite Lou's best efforts to help Will see that he can have a life worth living despite his health problems Will remains deeply unhappy and wanted to end his life in Switzerland with the organisation Dignitas. I felt it was very brave of the author to bring into the story assisted dying and the mix of feelings and reactions from people Will, his family, Lou her sister and the quadriplegic message board. 

I liked how though most of the book was written from Lou's perspective that parts of the book were in the view of other characters such as Will's parents and Lou's sister however I would have like a chapter written from Will's perspective.

All-in-all it was a good book and I would like to see the film version and also read the book sequel at some point but I don't feel in a rush to want to read it.

Tuesday, 11 January 2022

Why the plastic straw ban is still a big deal

It's been a long time since the straw ban came into place but this issue still affects me so much.

Plastic straws are an essential aid for me; without them I'd struggle to drink and the vast majority of straw alternatives are not suitable: injury risk, allergies, not positionable, too expense, hygiene etc - see the chart below. I have floppy weak wrists so I can's tip a cup towards me; I also have to use lidded cups because of my involuntary movements. When I'm in hospital I hate being given the beaker cups with a spout lid.

Everyone I know who has a need for plastic straws always re-uses them; they are never 'single use'. When the ban came in I stocked up on straws so I have plenty to keep me going for quite a long time. I do have some silicon straws that can be spilt down and reconnected which (a) makes they great to clean but also (b) these are hypoallergenic silicone but the issue with these straws are that I can't position them to bend. I have to spend a lot of time laid down so I've perfected my ability to drink in this position and bendy plastic straws are the only option in this situation.

One thing I don't get is that if I say ordered a frappachino it comes in a plastic cup with a plastic lid, or if I buy a Diet Coke it's in a plastic bottle (which I still need a straw for) or if I order coffee and have a fruit pot the fruit pot comes in a plastic pot and I may also be given a plastic fork and if my drink is to-go it has a plastic lid. Yet whenever I ask for a straw it's paper or at the café at my hospital they provide hard biodegradable plastic straws that (a) melt in hot liquids, (b) if I jerk I jab the roof of my mouth and both the paper and plastic straw aren't bendable. I do try to carry around some straws but sometimes I forget to bring some with me or I don't plan to get a drink. Also where is the recycling points for my plastic bottle or fruit pot or paper cup and straw?!

So as you can see the straw ban though old now is still a big deal for me and probably many other disabled people.

Tuesday, 4 January 2022

Positives of 2021 and plans for 2022

It's so easy to dwell on the challenges of the past year. Thinking about how my M.E has worsened and whether this new state my M.E is in is now my new normal or how my FND has progressed with new symptoms developing and the difficulties I've had at times to access care like the migraine clinic that I've been waiting to see for about 2 years. Then there was the surgery I'm desperate to have an I could have had it but I need to have it in an NHS hospital as I need ITU/HDU on standby due to the complexity of my needs and no one can tell me when my surgery will happen. Then there's the dwelling on how the following year will be and the challenges I will undoubtably have to deal with ahead of me.

Dwelling on the challenges and negatives is so easy so what I've been doing with my therapist is thinking about the positives of this year no matter how small and also what I've achieved this year. This has really helped me to see this year much better; it doesn't take away the challenges but it's made me see things in a different and brighter way.


So, what's been positive in 2021?...

  • The first thing is how I've exceeded my goal of getting 100 subscribers to my YouTube channel. At the time of typing this it's not the end of the year yet and today checking on my channel I have 128 subscribers!
  • I've also exceeded to number of books I planed to listen to/read on my Good Reads reading challenge.
  • I've supported and participated in different opportunities. I've written articles for both the M.E Association and Action for M.E and also supported and been part of some of the campaigns they've run this year. I'm now an M.E Champion Blogger for the M.E Association. I also have become and ambassador for the Chronic Warrior Collective and joined their Extra Card Crew and supported their work.
  • I feel so much gratitude towards my friends and pen pals for all the messages and mail I've received this year.
  • This year I finally got a care package after years of trying and I now feel supported by our local adult social care service. I have a very good social worker, and a fab PA. Plus also in my care I have some good doctors and my link worker from the Social Prescribing team is great. Also just recently I've been assigned to a lovely advanced nurse practitioner from the 'Chronic and Complex' (which is how they alway see me when I'm in hospital) team who's supporting me with my care. I feel that in terms of my health and social care the past few months my care and support has really come together finally and getting this care I feel more positive about 2022.

Projects and things I want to do in 2022...

  • I what to buy things from smaller or independent shops as much as possible more this year
  • I want to commit to my photo journal 
  • Also I want to stick with my 1 Second Every Day project and come up with some creative video clips (as my life isn't that interesting which I think is why I stopped last year)
  • I want to finish my BSL online course
  • I would love to learn how to braid my hair
  • I want to continue growing my blog and YouTube channel
  • And finally hopefully I'll have my surgery soon and some extra PA's too!

Tuesday, 28 December 2021

FOMO - Feeling of Missing Out

I don't use the term 'Fear Of Missing Out' because there're isn't any fear that I may miss out; I know that I'm missing out hence the feeling of missing out.

Having chronic health problems, especially having severe M.E I often feel like I'm missing out. This could be missing out from not having being able to graduate from University, or feeling like I'm missing out on what I see people I know are up to from what they share on Instagram or missing out on family occasions or that I missing out on the life that I should be living if I hadn't have become unwell. I feel like I'm missing out on so many things: education, employment, socialising with friends, family get togethers, holidays, going places and so much more.

I've never gotten over the Feeling Of Missing Out and it makes me feeling like my ill health is winning over on me and that it's taken so much away from me. Rather than feeling angry like some people may feel for me I feel more a sense of deep seated sadness for the life I should be living if I hadn't of gotten ill.

During the Christmas holidays especially for myself and many others it feels a time of feeling like we've missed out. There ar times when I've had to miss out on events; some of which I would have loved to be part of but I know it wouldn't have been possible for me to join and it would have tipped my fine balancing of energy levels and other symptoms. I had to prioritise so carefully what I could and couldn't do and how much I could do. 

That feeling of missing out makes me feel at times invisible as I'm not there, instead I'm alone in my room. Coincidentally the international campaign on World M.E Awareness Day is called the 'Millions Missing' - the millions of people world wide missing from employment, education, society etc due to their M.E, especially those with severe and very severe M.E.

I don't think I'll ever get over the 'Feeling Of Missing Out'. I always wish I could enjoy things and equally not feel the payback and exacerbation of symptoms when I do join in with something. However I feel like I've come to accept those feelings of missing out and times and events that I do want to join in with, even briefly, I've found ways to do so. I plan lots of rest beforehand, I ensure that I manage my energy whilst joining in and listen to my body when it starts to tell me that it's had enough or needs a break and I ensure that there plenty of time to recover after.

I've also come in a way to accept my limitations and that feeling of missing out. I know that I can't do everything so instead of dwelling on what I can't do and what I'm missing out on I look at what I can do. This has taken me some time to do and there are times still when I do feel sad about certain things I'm missing out on. Life with chronic illnesses isn't a linear; there are times when I feel okay and times when I don't feel okay including that feeling of missing out. Sometimes seeing a post on Instagram or something on YouTube or hearing what a friend has been up though I'm happy for my friends inside I wish I had the ability to do things and then that makes me feel like I'm missing out on things I'd love to be able to do. But this is where acceptance comes in and also focussing and feeling gratitude for what I am able to do within my restrictions and the feeling of what I can do rather than the feeling of what I can't do and what I'm missing out of.

Text reading There are things that are possible; things that are impossible, but otherwise I think within my limitations anything is possible.

Tuesday, 21 December 2021

Christmas with a chronic illness plus some tips

A green crochet Christmas tree with a brown stump at the bottom there is a button star at the top of the tree and it is decorated with differently coloured small pom-poms
Christmas is a lovely time of year. I love spending more time with my Dad who is off work as he's a teacher and I enjoy seeing my family. I love the kindness of my friends sending me cards and gifts and I enjoy making cards and gifts and sending them out in return.

However, this time of year can be difficult. I can't speak for all chronic illnesses only mine and how they affect me. I find Christmas affects different aspects of my illnesses. My limited energy means everything takes a lot longer to do and as I type this I still have a load of wrapping to do. Making, writing and sending out Christmas cards and gifts took me at least 6 weeks to do - I don't normally do Christmas cards but it was something I wanted to make an effort doing this year. I also have to plan a lot of things, things I want/need to do and how I will do them such as breaking up the task, ensuring I follow my daily plan and have regular rest periods, have restful days before Christmas Day to enjoy the day and then plan Christmas Day itself and then ensure I can rest and recover after Christmas Day so that I'm able to visit family which I really want to do as I haven't seen my cousins in quite a long time. 

There are also events that I have to decide to sit out of as it will be too much for me. I find my hypersensitivity is affected so having family round downstairs (which I'm sitting out of and laying in bed resting instead) and the noise from downstairs is too much so I put in my noise cancelling ear plugs and also my noise cancelling headphones. As well flashing fairy lights affect my hypersensitivity to light. I also find the cold makes my pain and muscle spasms worse.

Despite all this I set myself to focus on the enjoyment of Christmas and when you have a chronic illness or disability you do just learn to live with and adapt. Christmas just poses extra challenges compared to rest of the year.


Some of my tips for managing the holidays with a chronic illness or disability

A paper bag with the word prescription on it and the green pharmacy logo
(As I said above, I can't speak for all chronic illnesses but hopefully you may be able to relate to some of what I've written and also some of what I'm going to write about below.)

Ensure you have enough medication to keep you going!

Plan, plan, plan! List all you want to do, from doing some baking through to Christmas Day events

Use your activity management skills; don't do more than you're able to and listen to your body. If it's telling you that it's tired, in pain or flaring up etc stop and take a break and rest.

Pace yourself. Break tasks down such as Christmas card writing or wrapping gifts.

Though you can feel like your missing out your body isn't Superman and you may need to sit out of some things so you are able to enjoy the things you do take part in.

Tuesday, 14 December 2021

Low Level Activities

When you have a limited supply of energy it can be difficult at times because you want something to do to occupy yourself but you may lack physical or cognitive energy to do certain activities. I find myself in tis situation a lot as well as building low level activities into my daily plan so I'm doing more restful low level activities alongside actives that take up more of my energy.

So here are some low level activities I find help to fill my day.


Audiobooks

I find reading a little more challenging as it requires more concentration so audiobooks have opened up a whole new world to me and made me fall in love with books again. There is a lot of audiobooks out there in a wide range of genres and I find it really enjoyable to lay in bed listening to a book.

If you struggle to access books because of you're disability you may be consider to have a 'print disability' alongside those who are blind and visually impaired. This may give you access to the RNIB Library and Calibre audiobook library though an app called Easy Reader. This is how I get my audiobooks and it's great that I can access audiobooks for free. Alternatively there are lots of different audiobook subscription services out there now with more people wanting to access audiobooks. 


Reading

A black woman laid on a sofa reading a book
If books are accessible to you this is another low level activity and depending on your ability you could just put 10 minutes aside to read. I find trying to get a variety of different activities in my day helps me as my mind and body aren't overdoing in on one type of activity. But if you love books you can spend as much time as you wish reading.

Some areas may offer a home library service and volunteers can find the sort of books you like and bring them to your home for you if you are not able to visit the library yourself and this can help bring down the cost of buying books as well as finding room for your books.


Podcasts

Podcasts I quite enjoy listening to as I find them so informative and I like the wide variety of podcasts that are out there. There is such a wide variety of podcasts out there on a wide verity of genres, for documentaries, educational, mini fiction series, current affairs and chatty style podcasts and everything in between! There really is a podcast for everyone.

I get my podcasts from BBC Sounds and Apple Podcasts and currently I'm subscribed to Audible so there's podcasts on there too.


An adults hand colouring an image
Colouring

Colouring is a good low key energy as you can break the activity down and just spend small amounts of time and finish the image bit-by-it. There's also such a wide range of colouring books out there; some with more complex images than others. You can also get colour-in stickers or postcards.


Activity books

There's a wide range of activity books out there from word search books, criss cross, sudoko to more creative activity books like sticker-by-numbers. Like colouring you can break the activity down and just do one word search puzzle or part of a sticker-by-numbers image. 


A man's hand wearing a long sleeve striped top working on a jigsaw puzzle on a wooden table top
Jigsaw puzzles

If you're able to jigsaw puzzles are a great low level activity and like with some of the other activities mentioned above you can slowly work on jigsaw puzzles until it is completed. You can also get a range of difficulties from 100 piece jigsaw puzzle to ones with 1,000 pieces.

I'd recommend to start small and to work your way up. If you find you enjoy jigsaw puzzles it might be worth getting a puzzle board so you can store the jigsaw puzzle you're in the middle of working on.


Pinterest

I would personally consider Pinterest a low level activity. You can build boards on different topics based on your interests. One activity I'd defiantly recommend doing on Pinterest is building your dream home with no limitations or restrictions. As a suggestion you can create your 'Dream Home' board and have a section for each room of your dream home and you can spend ages designing all the things you'd love to have.