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.

Christmas with a chronic illness plus some tips

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

(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.

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

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.

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. 

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.

Book review: 'The Secret Midwife'

Rating: ★★★★☆

I thoroughly loved this book and it was something different to my usual genre of book and I'm intrigued to listen to more memoir/confessional books.

The book is written by a midwife who remained anonymous and she shared in her book in a chronological fashion. At 17 she didn't know where to take her life and then went on a midwifery taster course and loved it and she knew then that that was her vocation. At 17 she started her 3 year midwifery diploma. She took the reader through her training as a midwife until she qualified and proudly put on her blue dress for her first shift as a qualified midwife. 

The book followed the highs and lows of her career and she went into such detail including the medical aspects and I learnt so much about the role midwives play and all the complications that can happen. As well as that she also shared her person life; how she broke off a long term relationship and then found her husband and their relationship and life together, her miscarriage of her first baby and then the birth of her daughter. 

In the book she also shared the changes of her role as an NHS worker as the years passed by. The way management changed, new protocols and changes to NICE guidelines and work practices. As well as this she also spoke of how it was like to work for the NHS and the strain on resources, lack of support in certain areas such as giving evidence in court and chronic staff shortages. In the book the author shared how this ultimately lead her to having a mental breakdown and having time off work due to anxiety and depression.

Each book touched on different topics and themes of the job such as her midwifery training, baby loss, mental health in motherhood, babies born in corridors and in toilets, Dad's delivering their baby as there was no time to get to the hospital, birthing complications, surrogate women, different cultures and how this affects the delivery of a baby among many other things.

It was a totally different book to the ones I've been listening to for quite a while now and I throughly loved this book and I've already sought out similar books. I learnt a lot about the role a midwife, what they do and so much more. That whole side of healthcare I'd never given much thought to and I now admire the complex role midwives play within the NHS. 

As I listened to the book I followed the highs and lows of the different men and women the author featured in the book. There where funny moments and more somber elements. It's a book I would defiantly recommend.