When a person loses their “raison d’etre”, what do they become? Blood and bone and tissues.
I have just watched a young athlete win her heat in the European championships with an enormous Personal Best and the delight on her face, in her body language, in her voice were infectious and special. The training and the hard work that she has put her body and mind through over weeks, months and years is paying off today.
The thing that drives each and every one of us to get out of bed in the morning will be individual and change at different times of our lives. Dreams and aspirations aged 20 will alter, expectations change with life experience and maturity. But what happens when that reason for being feels like it is “stolen’ away by chronic health issues?
Personally I found that something that affected me greatly was medication. The combination of strong anti convulsant drugs combined with opiates used for nerve pain combined with a night time drug usually used in severe depressive disorders, at times created side effects that were as difficult to cope with as the chronic pain for which they had been prescribed. The combination of pain, sleep deprivation, brain fog and inability to concentrate just felt like a recurring cycle – a domino effect as one thing caused another caused another in ever decreasing circles. I didn’t know whether I was coming or going and the antidepressant drug, mirtazepine, left me unable to function in the mornings – my kids, the younger two at primary school then, would have to physically get me out of bed and then I would drift off into semiconsciousness sitting on the loo. I could hear them talking to me but I just couldn’t open my eyes.
Slowly but surely it felt as if the ordinary things in life were being stripped away, including my lifelong passion for reading. I have always had a book or two on the go, and no matter how late is is, I always have to read at least a couple of pages before turning the light out to sleep. Over a period of a couple of years I found my ability to read a book diminished – despite being awake until the early hours night in, night out, I was unable to complete a book as I read the same page over and over. What the heck was happening to my brain? A friend bought me a magazine subscription for my birthday and I couldn’t even manage to read a whole article. But my pain was so severe and uncontrolled that my inability to read was the least of my problems, as some days I couldn’t imagine living another week like this let alone another 40 year years.
When joining the pain programme at St Thomas’s hospital (London), before I had my spinal cord stimulator trial, I had to agree to reduce my oxycontin (oxycodone – double strength synthetic morphine) with a view to coming off it entirely. I have written about the current opinions re use of opiates and chronic nerve pain before and about my “withdrawal” – that is not what I want to concentrate on here. My opiate dose reduced over a period of time and gradually my sleep improved along with my concentration. How is it possible that my sleep got better with no pain relief (I cannot have my scs turned on at night)? I had not realised just how huge an effect the drugs were having on my sleep and general well being – and not a good one!
Gradually my brain has allowed me to start reading again and to finish a book or an article. I found a local book club that meets monthly in the pub and we read any genre as long as it is a recent publication, so that no one has already read it – no issues to be had with discussing someone’s all time favourite! I love the fact that we don’t take our discussions too seriously and I have met some lovely new friends. My love of books led me to some social media book groups and it was here that I discovered the world of reviewing.
The fact that authors and publishers are generous enough to share their new pieces of work with an amateur reviewer like me feels amazing. I have discovered the joy of receiving an advanced copy (ARC) of a new piece of writing and being one of the first people to read it. Books have always been a part of my home and as a bit of a puritan, I would only ever read an actual book – I like the feel of a book in my hands, the smell of new paper and the beauty of a new cover and uncracked spine. But……becoming a book reviewer has converted me to a Kindle user. Don’t get me wrong – nothing competes with a brand new book or a well thumbed favourite classic – but I do appreciate having so many books available in one place and as my ability to hold a book has worsened, the ease and weight of a Kindle is perfect, particularly when lying down!
I know that authors are grateful to the band of book reviewers that are out here in the blogosphere, on goodreads and Amazon. We help to get their titles out in the public domain. For me though, I have so many reasons to feel grateful to these wonderful authors, publishers and social groups as becoming a reviewer has given me back a role and with it a sense of worth. The first time that I saw my name on a banner for a blog tour, I knew that I could still make a difference. I might not be able to hold down a job due to my chronic conditions and the unpredictability of my symptoms – but this is something I can do!
There still are days when I am unable to read, and others when I might have read the book but brain fog stops me from getting a review from my head onto paper. I have had times when I will know that a deadline is looming and the stress of being unable to write will increase my symptoms, thus starting a vicious circle. But I appreciate that I have been gifted someone’s work, something precious to them that they have poured their heart and soul into. I am entrusted to care for it and I will always do this. There may be times when I struggle to get a review written, literally when I have dislocations, but I will always read a book sent to me and give a fair, honest review. In school many years ago, I was taught how to write a book review and I have never quite been able to shake off my old teacher’s instructions – some of you will know that this means my book reviews can be a bit long. But if I have been given an author’s “baby” the very least that I can do is spend the time to give it due care in my review.
Reading and writing has given me a new purpose. It can never take the place of my lost life, but it can sit alongside it and over time reviewing has become an important motivator for me. I am reading a huge variety of genres, some that I would never have chosen myself and thoroughly enjoying expanding my horizons. I have discovered audio books and use these to help motivate me when doing physio and exercise plans – I can be often be found pacing my neighbours’ treadmill whilst listening to a thriller! It isn’t easy to do the necessary exercise to keep conditioned when everything hurts, but a good drama or mystery certainly helps to distract from pain and dodgy joints.
At times living with a chronic illness can roll one day into another into another, but amidst the fatigue, pain and failing body, I believe that it is important to have a reason to get out of bed and keep the brain “moving”. For me reading and reviewing has given me a new “raison d’etre” – something to keep my brain working, to feel some pride in and to appreciate my self worth.
Thankyou to The Book Club on Facebook & Tracy Fenton, Netgalley, Love Books Group & Kelly, Justine Sha at St Martin’s Press and the many authors and publishers who have entrusted me with their work.
PainPalsBlog 
Got any audiobook recommendations that C and I might both enjoy? Struggling to find much common ground at the moment! x
LikeLiked by 1 person
Reblogged this on Spoonie Writer/ Spoonie Blogger and commented:
Great post! Reblogging.🙂
LikeLiked by 1 person
Thank you so much! I really appreciate it xxx
LikeLike
I love to hear that you find purpose and a reason to continue on and get out of bed. We all need to have that in our lives.
LikeLiked by 1 person
We do….even though some days it would be easier to stay in bed, particularly when the teens are all home ha, ha, ha!!
LikeLiked by 1 person
Thanks Claire, I really enjoyed reading your story here and your honesty in sharing your thoughts. I’m glad you are enjoying reading again and doing reviews. Visiting from #mlstl
LikeLiked by 1 person
Thanks Debbie! Appreciate you reading x
LikeLiked by 1 person
We can all find a purpose in life, can’t we, even if at times we can’t see what it is. I love to read and how wonderful that you have this opportunity. Great to have you join us at Midlife Share the Love Party and thank you for sharing your thoughts with us. #MLSTL
LikeLiked by 1 person
Thank you for having me, Sue! Please know that I will always visit others in the group even if I am not the quickest….sometimes brainfog and pain just take over. But I love that I can be part of such a diverse group of Middle Lifers!! xxx
LikeLiked by 1 person
Hello Claire, no problem at your own pace is fine. It is good to connect with others in our own niche though, isn’t it? See you on Wednesday and have a great week!
LikeLiked by 1 person
Chronic pain robs us of so much, and so do chronic illnesses. That is when finding purpose become most important.
LikeLike
Absolutely! I am still learning day by day, but accepting there will be bad days and not to feel guilt for just “sitting” really helps!
LikeLike
Such an important post for many to read and I am so glad you have written frankly and with sensitivity. Chronic pain – and some of the answers to it via drugs – can rob people of the lives they really want to live and love. I understand it from a wife’s perspective and have watched many changes of both treatments and medications in my husband to know there is not one answer nor is the answer simple. I believe you are nailing it…and there are days and nights that suck…as my husband is now once he took back control of how he would manage his multiple conditions. Denyse #MLSTL
LikeLiked by 1 person
Your words mean a huge amount to me Denyse – particularly as a carer and spouse. It is really hard to explain the effects (negative & positive) of chronic health on a household and unless you have seen if first hand, understanding that there is no”getting better” but rather taking back control is almost impossible to get your head around. Thank you for reading xxx
LikeLike
We certainly take our health for granted and don’t appreciate how other people are struggling to get through the day. I so admire the fact that you deal with an enormous amount of pain and yet you still get out of bed and set goals for yourself. I’m not good at reading books that aren’t in my comfort zone, so I don’t think I’d make a good reviewer – you sound like you’ve found the perfect way to use your time productively. Thanks so much for sharing with us on #MLSTL 🙂
LikeLiked by 1 person
Thank you for stopping by and reading – it is words like these that spur me on!! And being able to take part in blog parties like #MLSTL
LikeLike
Thank you for this post, Claire. It interested me for a couple of reasons. To this point in my life, I have been blessed with good health, but my husband suffers from debilitating cluster headaches and idiopathic pancreatitis, so chronic illness is a part of my life. We’ve dealt together with the side effects of opioids and illness. Also, I love books, but did not realize there was such a thing as amateur reviewers. It’s great that you have found something that benefits you and the authors. #MLSTL
LikeLiked by 1 person
If you enjoy reading Christine, you should give it a go! Chronic illness has such a massive impact on the whole family doesn’t it?! My dad also has cluster headaches and my father inlaw has been extremely ill with liver and pancreatic problems – so I understand both of your hubby’s conditions. As the carer I think it is important for you to feel valued beyond that role (after all who really goes into a relationship expecting that the role of spouse will morph into carer?) – when my hubby stopped working for his own mental health and my failing health, it became so important for him to have something for himself. He is now a part time sports coach at the primary school that our kids once attended, and is a dog walker! The kids and the dogs love him – and he is getting so much more out of life. Strange how things work out! Thanks for stopping by – off to look you up now! x
LikeLike
Dear Clair, Thank you so much for visiting my Blog at Soul Light Universal, and for you kind support with LIKE, I appreciate it so much! ~ I am sorry to read about your major struggles with conventional medicine, and was very happy to learn about your awakening, from clutter, with help of beautiful servants @ St. Thomas Hospital, in London.
As you might noticed, I am an Alternative Practitioner in NYC, and all my Blogs are related to potential ability of our Soul to heal itself, with many simple technique that are available in Soul Healing, and Transformation, and through the Source Blessings that would help, and are optional.
When you get a chance, I believe you would benefit from these two blogs, also. They are more related to practical solutions in regards to health challenges.
https://soulightuniversal.com/2017/10/09/the-power-of-soul-the-new-paradigm/
The YouTube video, linked to the Blog on Forgiveness practice, may be very beneficial for you to see, and acquire if possible.
I would like you to know, that I am with you, always, in my spirit, first and foremost, and please reach out to me at any time, and I will do the same, too!
in LOVE and LIGHT, Tat Jane @ Soul Light Universal
LikeLiked by 1 person
lovely post and it resonated with me for many reasons!
LikeLiked by 1 person
Thank you for reading!
LikeLiked by 1 person
The tears! Thank you so much for this post. Parts of it felt like they were spoken from my own experience. My ability to read was one of the first things affected when I developed chronic illness. Thyroid Disease caused my eyes to feel like sandpaper and the chronic fatigue with brain fog made it impossible to concentrate even if my eyes were doing okay on that particular day. I am so glad to hear you have found your purpose and passion. It gives those of us still struggling, hope to continue on. I look forward to reading more!
LikeLiked by 1 person
Thank you so much for a lovely comment – I am just sorry that you understand my post because of your experiences. I still find my brain fog and concentration vary from day to day, but by accepting that and using the good days, I can get some enjoyment from simple things. Lovely to “meet” you x
LikeLike