10 years on

This February marks ten years since I became chronically ill.

Sure I've had health problems all my life, I grew up with an acute curvature of my lower spine (hyper lordosis) and had care for that as well as treatment for my mental health as a teenager and also my now diagnosed Ehlers-Danlos, a genetic hereditary condition was always there just never known about. However non of my health problems as a child including my mental health including anorexia which I was seriously ill with never really affected me and my life to the extent and in the same was as my health issues that I've been dealing with over the past ten years.

Over the past ten years I have lost so so much. Friends, academia, a future career, my dream career, my independence, volunteering, the ability to look after myself, my mobility, my freedom, dreams and plans and much much much more. I have grieved and I am still grieving for the life I have lost and I feel lost, like where is my place in this world? Thankfully I'm now just beginning to get some support from a psychologist at UCLH to help me re-find my purpose and what is meaningful to me so I can move forward in life.

How it all started...

It started back in 2013 with a case of the flu which I never recovered from. After then I was tired a lot, I struggled to walk and ride my bike around campus and to places like the shops and to dance for as long as I used to be able to. I found it hard to take in what was said in lectures and seminars and to get essays typed up and to do my set reading even with all the support of my academic support worker. Then one day I had a seizure, and then after that I had more.

By this point it was February and my health was in pieces. It came to the point where I had to leave University where I was studying nursing and return home. I thought at the time that this would just be a temporary measure and I even reapplied to a University to return to my studies. I've always been academically driven and my only plan for my life was academics and my career. My drive was to eventually become a child psychotherapist. I didn't get back into University but they advised me to do some further study which I did but it took me longer to complete the course than usual and I didn't get the grade I wanted and what my tutor thought I'd get so I felt pretty low. I could have retaken the exam module but by this point there was no way I'd cope doing it with the time frame.

I'd gone to my GP several times about my overwhelming levels of exhaustion and other symptoms. Each time my GP would diagnose me with Post-Viral Fatigue Syndrome and I just needed to rest and I'll soon be feeling much better. However I never did yet I still kept being told the same information.

Then on the 4th July 2017 I finally had my long awaited for neurology appointment with Professor Edwards regarding my FND (Functional Neurological Disorder). Until this appointment I'd not been diagnosed with anything other that this Post-Viral Fatigue Syndrome. Professor Edwards specialises in FND and confirmed that I did have FND - a neurological disorder where the brain's messaging system doesn't work properly. For some people this can cause just one symptom or for others like me it can cause multiple. So that was my first solid diagnosis since 2013, four years on,

As well as Professor Edwards confirming my FND diagnosis he also said I had M.E. but little more was said about M.E. so I was left to go home and Google this diagnosis myself and work it all out alone as no further referral was made. Professor Edwards also picked up on my hypermobility and referred me to Dr Kazkaz, a rheumatologist who specialised in Ehlers-Danlos Syndrome over at UCLH.

I eventually saw Dr Kazkaz and after some tests including genetic testing I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and because of the secondary problems my EDS was having on different organs of my body Dr Kazkaz referred me to different specialties within UCLH as well as the Pain Management Centre. I've also seen consultants and other departments at my local hospital too.

I honestly see my health as a full time job and that is a blog post I plan to write about soon.

Over the years my health has declined but not in a linear way, it's been a gradual up and down process.

Back in October 2019 - March 2020 I was in a specialist unit for people with FND and M.E. (though they mainly focussed on my M.E.) Some of the treatment health like learning activity management and developing a daily plan as well as being around the other girls with had M.E. and FND too but other aspects of my time there didn't help like Graded Exercise Therapy so soon after coming home my M.E. started to worsen.

Then in April last year I had surgery and that really crashed and set-back my M.E. and I haven't really recovered since then. However the surgery was a success.

Where I'm at now...

I still feel grief for the life I should have had and have lost but each day I try to find a focus for the day such as what I'm going to do and I just take each day at a time; each activity at a time as my health can change so rapidly. 

It's taken me a long time but I now feel like I've found 'my tribe'. My only way of socialising is on Instagram and through letter writing to friends and pen pals and I now feel since last year that I have a good network of people around me that are good and positive as sometimes the chronic illness community can be a competitive and unhelpful place.

I'm also now looking to find my own home and I can't wait to move out and have my own space to design and put my stamp on. I've already got a growing Pinterest board with a section for each room planning out my new home!

I have a good network of support from an array of different professionals from doctors, nurses, housing support workers, other professionals, Personal Assistants, family and friends.

So though the past ten years has been tough to say the least I don't regret becoming ill. It's made me a stronger and more resilient and grateful person and the person I am today.

Guest post by Rebecca writing about FND

“About 1 month ago I was diagnosed with FND, Functional Neurological Disorder. My initial reaction was relief and empowerment, finally, after 2 years of unexplained symptoms I was given a name for thief that had stolen my life away. However, I soon discovered that the letters ‘FND’ are accompanied by contradictions, at times prejudice and frequent misunderstandings. In short, the diagnosis felt somewhat like being thrown a fantastic gift, grasping it for just a brief moment before watching it slip through my fingers and smash on the floor. 

Certainly, the same emotional cycle of optimism, hesitation, disappointment and embarrassment followed. Optimism that a diagnosis would lead to answers, being heard and understood. Hesitation followed, caused by confused and contradictory explanations. I felt disappointment in the reaction of health professionals and lack of support provision and finally embarrassed by the assumptions, invasive questions and shocking stigma attached to the diagnosis. 

Both a blessing and a curse, FND was a common disorder that no one had heard of, an enigma of disability, real, but “not real”. I quickly discovered, my journey hereafter was going to be an unusual struggle, finding health, respect and rationality again. 

Thankfully, I also discovered I wasn’t completely alone! A few super strong and brave people were not only battling life with FND, but also battling the misinformation out there. Sharing knowledge and cultivating respect for people with FND. These voices, although few, provided clarity and confidence. Pulling others, like me, out of the ambiguity and creating a place of solidarity for them.

My hope, arriving in this strange new place, is that more people with FND will be empowered to voice their experiences, to shake off the offensive outdated language used around FND, and to deepen empathy within their communities based on knowledge and understanding. It’s time for FND and those suffering, to be understood, accepted without bias and listened to! Fighting Negative Discrimination!”

What is FND?

FND is a problem to do with the brain’s messaging system. It’s a bit like when you’re in a car an you go to press the break pedal but insteadc the indicators come on. This is what happens in our brain; it tries to do one thing but the messages get tangled up and misfire resulting in a wide range of different symptoms.

• For more information about what is FND and links to further resources visit my page on FND here

Origami bookmark tutorial

 

You will need a 15cm square piece of paper (plain or patterned), washi tape and scissors

Face your paper pointing like a diamond

Fold in half - make sure you make nice crisp creases on all your folds

Fold up the right quarter to meet the top point

And do the same on the other side

Unfold the last two steps and fold down the top point to meet the middle

Fold up the right side again

Tuck the point underneath to start forming a pocket

Do the same on the other side

Now you just need to decorate with washi tape and happy reading!

Make time to rest

Rest is so important especially when you have a chronic illness or disability. Making time to rest can really help with fatigue and other symptoms such as brain fog and pain.

For some people, like myself I need to build regular rest periods into my day but others may find that they just need to rest when they've over done it or on bad days or if they haven't slept well.

Working out how best to rest my mind and body has been a journey of trial and error. For some people they rest by watching television or listening to a book but for me that's too stimulating. Those two activities for me still require a low level of attention and use of cognitive energy and I consider them to be 'low level activities'.

In my other posts you may have heard me write about my 'daily plan'. This is my schedule for me day which I developed with my Occupational Therapist and it helps me manage my M.E. It mainly consists of during the day alternating between activity (normal level and low-level) and rest periods ranging from 30-60 minutes (though my activity limit is 10-30 minutes). 

I find for me making regular time for resting really beneficial. It just allows my mind and body to pause periodically so that I'm able to keep going; if I didn't I would just crash.

The best way's in which I have found best is to listen to mindfulness meditations and soundscapes though I know this isn't for everyone. I find for me I really need to 'switch off' to allow my mind and body to just stop for a short while whilst I rest.

If this isn't for you and you find you have to still be doing something to rest some restful things I recommend include:

• Colouring
• Reading or flicking through a magazine
• Taking a hot bath or shower
• Watching easy watching TV shows or YouTube videos
• Listening to the radio, a podcast or an audiobook
• Easy to do crafts like knitting or crochet

Rest has proven health benefits including supporting mental and emotional wellbeing, easing pain, supporting the immune and cardiovascular systems and decreasing blood pressure.

Some apps I'd recommend for mindfulness, meditation and soundscapes are:

• Calm
• Better Sleep
• Headspace
• There's also this this meditation on YouTube I love - a visualisation on colours

Fundraising for M.E.

After the success of my Christmas card fundraiser and after a lot of thought about it's do-ability I have decided to continue to sell my handmade cards and fundraise for two M.E. charities: Smile for M.E. and Action for M.E. (who I fundraised for at Christmas).

I had to think a lot about whether I should go ahead with the project and the way I done it this time I've set it up to be more M.E. friendly as how I did my Christmas fundraiser really crashed me. I also had to factor in my health and the fact that *hopefully* at some point I will be moving. However I think the way I've worked it I can alway make a notice to say that I'm taking a break for whatever reason.

I also did a lot of research and thinking into charities but deep down I felt that I wanted to support M.E. charities - everyone has their own charity or charitable area that is meaningful to them for whatever reason and though I do have other illnesses I feel a closeness to want to support the work of M.E. charities. This is partly because M.E. is probably the illness that affects me the most; I also know how overlooked M.E. is and how little understanding of M.E. there is as well as how little funding M.E. research and just M.E. in general gets.

Smile for M.E.

Smile for M.E. is a small UK charity and they send out 'Smile Parcels' to people with M.E. as well as care givers to people with M.E. They also hold special events such as for Carers Week and 'Merryn's Smiles' - special Smile Parcels to people with Severe M.E. in memory of Merry Crofts who sadly passed away from the illness. Smile for M.E. was started in response and in recognition of the isolation and loneliness people with M.E. often experience. You can find out more by visiting their website or checking out their Instagram.

I chose to support Smile for M.E. as it's a very small M.E. charity and I love the idea behind what they do because M.E. is such an isolating and lonely illness as especailly for some like myself with Severe M.E. I'm cut-off from the outside world as I'm mostly housebound. So when I was nominated as received a personified Smile of a few gifts to me it reminded me that I wasn't forgotten about and that I was loved and cared about. I'd like to help the charity by fundraising for them so they can buy gifts to include in Smiles and bring the same feeling to other with M.E. or those that care for people with M.E.

Action for M.E.

Action for M.E. is another UK charity that takes action to raise awareness of M.E. and to take on the ignorance, injustice and neglect faced by people with M.E. They also provide targeted information, support to health care services as well as providing advocacy work to people of all ages with M.E. The charity also works closely with professionals and policymakers to improve for people with M.E. access to appropriate care and and support. Action for M.E. also collaborates with scientists and clinicians to help more research forwards. For example the DecodeME DNA database study.

In the past I've collaborated with the charity to help raise awareness through videos and articles on their magazine.

The reason why I wanted to continue fundraising for Action for M.E. is because of the support they offer to people like myself with M.E. The charity provides a wealth of information and resource to people with M.E. of all ages, care givers, the public and professionals. They offer support and advocacy such as their 'Listen to M.E.' helpline - but it's open hours are limited and I hope that more funding will extend this to help reach more people with M.E. The charity also supports children and young people with M.E. Also at Christmas they run a project called 'Christmas Angels' which means a lot to me and like with the helpine I hope that fundraising will help to keep this project running.

Where to by cards?

You can buy cards through my shop Instagram account - there's an explainer on there about the project and how I've organised my cards and how they can be purchased.

My top 10 favriorite books of 2022

 1. 'A Gil Behind Dark Glasses' by Jessica Taylor-Bearman

This is the first of two books by Jessica. In this book Jessica starts with a documentation of her life before she become unwell with M.E. (Myalgic Encephalomyelitis); then when she become ill and her rapid decline into very severe M.E. and the subsequent 4 years she spent in hospital due to the severity of her M.E.

The book took me on an emotional rollercoaster ranging from upset to anger. I'll admit that at the start of the book when Jessica is talking to her diary 'Bug' about the start of her M.E. I did cry because of the similarities in our story. Both Jessica and I became ill with M.E after having the flu from which neither of us recovered from and as Jessica talked to Bug about her overwhelming fatigue and leg pain (which I was struggling with at the time of listening) I cried and couldn't listen anymore.

I listened to parts of this book but I also read parts, some from the book other times on my kindle app. I have the sequel 'A Girl in One Room' which doesn't come in audio format but this year I'm determined to read the sequel.

2. 'The Language of Kindness' by Christie Watson

I've gotten through a lot of medical career books but this particular book was quite special compared to others. Christie doesn't write about the hilarity of the nursing profession but what is at the heart of nursing: kindness. I found this book really touching to listen to; to hear Christie talk about her career as a children's nurse, most of which was spent working in paediatric intensive care. In her book she talks about how she came to become a nurse and what it is to be a nurse. She shares her stories of all her and her colleagues acts of care kindness and what is at the heart of nursing and how this is being lost. It truly is a heartwarming book that I would highly recommend.

3. '163 Days' by Hannah Hodgson

This book documents Hannah's longest hospital admission of 163 days. The book is split into three parts.

The first part is the book and I loved the unusual format. For each day of Hannah's admission there was a written piece alongside medical note documentation.

The next part of the book was a collection of Pallative 'After Care' poems and the third part of the book contained previously published poems and a written thanks. These poems I want to come back to when I feel I understand and can grasp the concept of poetry better, though I have read some of Hannah's other poetry pamphlets and have enjoyed what she writes and the topics Hannah writes about.

4. 'Everyday Sexism' by Laura Bates

Laura Bates is one of my favourite authors and I love every one of her books and I've listened to a few of her books this year but I chose this book because it's slightly different to the usual feminism books.

The book comes from an online project that Laura set up to give people a voice to share their experiences of sexism, misogyny, discrimination, harassment as well as sexual and domestic violence and assault. People, men and and women of all ages from all over to world can share their experiences on the Everyday Sexism Project.

From that online project Laura wrote this book taking inspiration and submissions from the Everyday Sexism Project. What I like about this book and Laura's other books is that she includes men in her books and in this book she includes submissions to the project from men.

5. 'Holiday SOS' by Ben MacFarlane

I thoroughly enjoyed this book; it was like no medical career book I have ever come across nor did I realise that this field of work existed. Ben MacFarlane is a doctor and his job is to repatriate injured Brits from their holidays. I found it fascinating to and out the different injuries people have sustained on holiday and how Ben and sometimes a nurse from his team gets them home, hopefully without a hiccup on the journey, but that doesn't always happen, and sometimes he's called to help he own patient and and another flight passenger at once! As well as flying patients home on normal planes he also has flown patients home of medi-copters and luxury private jets.

It's defiantly a different book from your average GP working in an average GP practice writing about their day-to-day life as a doctor! Plus at the end of 2022 I discovered a sequal where Ben goes to sea to work on a cruise ship as a ship's doctor (which is also a good read).

6. 'In Your Defence': Stories of Life and Law by Sarah Langford

I actually listened to this audiobook twice last year. It's written by a defence barrister and she writes about her career climb from law school through to becoming a barrister which was quite interesting to understand that. Each chapter follows a different case in which she has defended. I liked how varied each case was in terms of the crime or crimes that the accused was on trial for. The author explained the different laws really well so that they where included in the book but where understood well by the reader. 

It was an interesting and well written book letting you into the life of a defence barrister; how their job works. The author Sarah Langford writes about UK law and a look into different UK law courts and how they are run. She also writes about what it is like to defend those accused sometimes repeatedly of different crimes and the circumstances surrounding them.

I enjoy books that follow different people with different careers (as you can probably tell from this list) so this is a good book if you're interested in reading about law or the life of someone who works in this field.

7. 'Weird Things People Say in Bookstores' by Jen Campbell

I got this book for Christmas last year. It's split into three parts the first two parts are stories from two bookstores and the third part is stories from different bookstores from all over the world.

The book contains little real life stories of strange things people have said in bookstores along with some illustrations to accompany some stories.

Some of the things customers have said to staff are so out there it's hard to believe what has been said is true. For example "is this book edible?" or "do you have a book on how to breath underwater?" or when a bookstore owner asks a customer if they can help them at at to which their response was "no I don't think you're qualified, I need a psychiatrist, that's the only help I need"

8. 'The Girl With All The Gifts' bu M.R. Carey

This book was another totally different book for me be Hannah Hodgson had recommended it on her YouTube channel (I've come across a lot of good books from Hannah's book reviews on her YouTube channel and Good Reads account).

It's took me a while to get into this book and work out the plot but once I got into the book I really enjoyed it. I'm still trying to work out though what the title of the book has to do with the plot of the book however?

9. 'A Perfect Stranger' by Shalini Boland

This was another book that was different for me but it was a real plot twister - a crime thriller/suspense novel (that makes me want to read/listen to more of this genre). I really enjoyed listening to something different and also not knowing where the story was going and the plot twist at the end was excellent!

If you want a book that's a thriller and something that you're totally not going to expect then I'd highly recommend this book.

10. 'In Order To Live': A North Korea Girl's Journey to Freedom by Yeonmi Park

This book was quite different to what I normally go for but it was very insightful. I learnt a lot about life for North Korean people and the political set up there. Yeonmi Park writes about her life in North Korea and her family's escape, and how difficult it actually is to escape and gravelly from country to country before they can get somewhere in which they can claim political asylum. Then once they have finally claimed asylum in South Korea their adjustment to finally being in a place where they are free. It's an insightful book and if you're looking for something different or want to understand more about North Korea I would recommend this book.