Book Review:Chronic Illness Learning to Live Behind My Smile by Jane L. Edwards

This books arrival was timely. Not only is it Vasculitis Awareness Month but also the 10 years anniversary of finishing my last course of chemo to control the inflammation in my brain, cerebral vasculitis. I thought when I was diagnosed after I completed this treatment I would step back into my old life. I was wrong as chronic illness is not like that. Life is never the same.  This is a book I wish I was given at the time, as it gives realistic expectations of a new life with a chronic condition, tips to help you on your new journey and how to keep your smile.

Book Review:Chronic Illness Learning to Live Behind My Smile by Jane L. Edwards

Chronic illness book

Title: Chronic Illness Learning to Live Behind My Smile

Author: Jane L. Edwards

Publisher: Independent

Release Date: 1st July 2019

Genre: Non-fiction, Self care

Purchase Link: Amazon 

Social Media Links: 

Website: chronicillness.co.uk

Twitter: @Jane_L_Edwards

Blurb:

The problem with a long-term chronic illness is that it isn’t a quick fight, taking a few drugs and having a couple of weeks in bed will not cure it. It isn’t ever an out and out win. You never beat the illness forever. It is a long-term war, some battles you lose and some you win: It is an on-going campaign. It is a chronic illness, after all. The struggle is about getting to a place where you can live together, the illness and you. Trying to make the most of the environment you share, an attempt to make it a positive life.This book is a collection of experiences I have faced living with a chronic illness. Lessons I am still learning from and having to deal with every day. It is like living in no man’s land, somewhere between feeling ill and feeling healthy, but not really being healthy or sick. I hope, by sharing my experience, I can help others with their journey. Help people to deal with their chronic illness or give some tools to help make some sense of living with a chronic condition. Note: several sections of the book talk about the U.K. health system NHS.

My Thoughts

At the beginning of this book Jane says it contains the information she wishes she had at the beginning of her journey; she has achieved this goal completely. I wish I had this book when I walked out of the hospital with a diagnosis of a rare disease and chronic illness. It would have helped knowing how things are,  tips to avoid the pitfalls and smooth the curves along the way. Chronic illness can be a lonely journey and it would have helped having something like this on my side to refer to even if it was just reassurance that I was doing okay and the best I could do at that moment.

Her words resonate with me and like her I am several years into my journey with a chronic and rare disease which has made me find my own ways to cope. Many of them are similar to hers. Reading this book earlier may have given me a short cut to some. I love the quotes includes especially the poem by William Ernest Henley,  and have taken it to heart as my message to myself. This was one of those books I nearly committed a crime against books and highlight important passages (post it notes have been used instead). Her thoughts on the health care system, industry and health care workers mirror mine. It is easy to read and her warmth and humour shines through. It includes her story, tips and support on how to deal with yourself, friends and doctors. It is her story but I think it will help many. I would love this to be available to people who need it and to doctors, and nurses dealing with patients. It would help so much.

Thank you so much for my copy, Jane L. Edwards so I could give my honest opinion. It will be on my forever shelf for reference and recommended to those I think would benefit.

Happy reading and stay safe!

Love

 

Rare disease day; The Realities of Vasculitis and Dystonia

10 years ago, I was hooked up to a drip having chemo after being diagnosed with cerebral vasculitis. Three years later I added a rare form of dystonia called dopa-responsive dystonia (DRD) to my medical records. Both are rare diseases and both were only diagnosed after years of GP visits and finally finding a consultant who listened and looked outside the box. Both times I felt relief rather than fear as I had an explanation of what was going on rather than being fobbed off with the line “it’s all in your head”. Perversely it was but not in the way that was meant when those hateful words were uttered. Both times I thought treatment would cure me and I would get my old life back; both times I was wrong.

dystonia text box

Cerebral vasculitis affects one in a million people while DRD affects one in two million. With odds like that I would rather have won the lottery. Instead these conditions were like a bomb going off in my life. In one swoop I lost my beloved library career, friendships and my mobility. Gone were the days of long walks in the countryside with my dogs, and browsing in shops alone (I really miss that. The joy of being independent, spontaneous and being ALONE). Instead I see four walls and the duvet far more than I should. Thank goodness for books, the internet which helped find my new friends, and my family.

Rare diseases do not just affect the diagnosed person; it has devastating effects on the whole family and friends. Husbands and children become carers, jobs are lost, education is affected and relationships are destroyed. Support is hard to find but social media becomes a lifeline.

The Charities

Luckily, when I was diagnosed with vasculitis, Susan and John Mills took over the vasculitis charity, Vasculitis UK. They transformed it from a small charity and basic website offering information to a go to place for patients and doctors  worldwide. Not only do they offer individual support they have increased awareness with medics, have conferences and fought for new treatments and research. They are both phenomenal.

The Dystonia Society has supported me on my journey but like many charities in recent years, funding has been cut which has had a big impact on their services. Despite their tireless efforts to raise awareness of dystonia,  DRD remains a page on the screen. Warriors of Dystonia has announced an exciting project to help dystonia awareness and support the dystonia charities. More info can be found here.

The best thing anyone can do is help is to raise awareness of these rare conditions and  charities that support them. Share tweets and posts. This allows people to find them and fund raise. This is why Rare Disease Day is so important because together the small charities are stronger. Awareness helps improve diagnosis, support and research.

Uncertain times ahead

Rare diseases in UK have an uncertain future. With only a small number of patients with each disease ,specialists are hard to find and keep. We rely on the cooperation of other countries and research. Leaving Europe has already impacted on ongoing and future research, grants and medication availability. What will happen next who knows?

There are always positives

It’s not all gloom. My life has changed but I have a new appreciation for the small things, family and friends.  I am grateful for my meds and having the movement they offer. The friends I have are the best- they have seen me at my worst and stuck around. I have time to follow my love for reading and I have rediscovered my old passion – writing. This has brought new friends and new opportunities. Maybe one day it will offer a new career.

Thanks for reading such a long post

Love

P.S Its the last day to enter RNA 60 giveaway to win 60 books. Click here for more info and to enter. Good luck!