As Christmas and year end comes around, I’m in a reflective mood.
It’s been a great year for me from a writing perspective. I’ve enjoyed networking with other bloggers within the chronic illness blogging community.
I’ve also connected this year outside of the chronic illness world, with lovely Christian women through Grace Girls and the Salt and Light linkup group.
I’ve enjoyed sharing my story with others. Hopefully through my own experience of living with a chronic, debilitating disease, I’ve been able to impart some tips showing ways to live the best life possible, despite the restrictions and challenges of pain and disability.
As far as my blog is concerned, I thought I’d round off the year by sharing with you the 5 top posts, according to my readers.
So Without Further Ado…
Here are the posts my readers likefld the best throughout 2018:
These last two are special to me. The first one acknowledges my beautiful husband and his care for me.
The second one is on the subject of healing and how this can be found, not necessarily in a physical sense, but in finding strength to live well with your chronic disease.
I’ve been writing for The Mighty for nearly two years now. Over that time I’ve written over 40 articles, many of them originate from a blog post.
At the beginning of the year I wrote a love letter to my amazing husband which was published by The Mighty. They continue to share it on their Facebook page and each time they do, the response is overwhelming.
This will always be my most favourite written piece and I couldn’t round off the year without sharing it here:
I want to thank you, my readers, for your love, encouragement and support during 2018. I have so enjoyed reading your comments and making new friends along the way.
I wish you and your loved ones a very happy and relaxed Christmas and I look forward to sharing more with you in 2019 💗
Take care
Sam xx
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
It was a life changing day. A day that would start me on a journey with a rare bone disease, so rare that even Specialists would stand and scratch their heads at the craziness of it.
None of my medical team know why I have it, what caused it and none of us anticipated the aggressiveness of it.
All we know is my bones continue to get denser and my bone turnover is negligible. A combination that causes major bones, like my femurs, to snap in two as if I’d been in a major car crash. It causes my feet to fracture while doing nothing more than wiggling my toes in bed.
My spine is now affected with severe spinal lateral and central canal stenosis, compressing my spinal cord. My hips have avascular necrosis and both of these conditions have progressed from mild to severe in less than a year.
Other bones throughout my body throb with severe pain and cause functional disability. I can’t keep having scans on every new threatening fracture or damage, so we wait until something breaks, or the pain from a new area severely impacts quality of life further.
Still Broken
Four years on and my left femur is still broken. It is official diagnosed as “non-union”. The bone disease will continue to prevent it from healing.
It’s almost become the least of my issues though as the disease has started to aggressively attack other areas of my body.
I’m used to my non-union femur. I know its pain, its restrictions, its abilities. It’s familiar. It’s become a part of me.
I’m the same with my foot fractures. They are familiar. I expect them. I know how to deal with them and I basically ignore them. If one becomes displaced I know to seek treatment but if they stay aligned, all is good. No one can do anything so there’s no point worrying.
Healing Comes In Many Forms
When we think of healing, generally we think of getting better. We expect a person no longer has their disease.
Healing can absolutely come in that form and it’s something to be celebrated when it does.
What about diseases that have no cure and no treatment? As a Christian I believe God can heal and does completely heal some people of all kinds of diseases.
Why some and not others? I really don’t have the answer to that.
I do think healing can come in surprise packages. We sometimes miss out on seeing a miracle because we have an assumption as to what the miracle should look like.
Let me explain what I mean….hopefully I’ll make sense.
I’m not physically healed and I don’t think that I’m going to be. I do however believe that I have been given a very special gift of healing.
The ability or gift to accept my circumstances. I’m not weighed down by them. I’m happy, content and excited about the purpose I have in my life, despite my very limited physical abilities.
Isaiah 41:10 ESV “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand”
A Perfect Peacefulness
I have a peace that allows me freedom from anxiety. It doesn’t mean I don’t worry about things from time to time but I don’t get distressed. I’d describe any worries I have as cautious concerns. They are healthy and necessary in order to make balanced life decisions.
To me this is the greatest gift of healing given my disease. Stress and anxiety worsen pain. My body screams with pain 24 hours a day. If I wasn’t able to be at peace with my condition and remain free from unnecessary anxiety, I honestly would be in major trouble.
I absolutely thank God for giving me a “peace that passes all understanding”
Philippians 4:7 ESV“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus”
If you’re feeling a little swamped by your life circumstances, your chronic illness and disabilities, take some time to pause.
Are you expecting complete healing? Are you so focused on being perfectly well you are at risk of missing out on the gift of healing in an unexpected way.
My disease has allowed me to connect with so many people from around the world, through my blog and my support forum. It’s allowed me to spend time writing and perusing this life long passion.
It’s allowed me to spend quality time with my husband who I absolutely adore.
Sure, it’s taken things from my life but even when we are healthy, life can take us in directions that require enormous sacrifices and loss.
Becoming Abled
If we can stop looking at our disease as “unfair” and “cruel” and stop thinking “why me”, our outlook can change.
“Why me” can become “why not me”. Sickness is a part of life. Accepting it as your new reality, can help change your disabled world into an abled world.
Peace brings clarity of thought. Peace is the opposite of war. If we stop fighting against ourselves by accepting our new life, warts and all, peace will come.
When peace comes an unexpected healing comes and that’s an amazing gift.
That’s a gift I pray you will also receive.
Take care
Sam xx
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I was loading my dishwasher this morning and fighting with a plate that refused to fit in.
It wasn’t really the plates fault. I was in severe pain and trying to get the task over as quickly as possible. I was also trying to fit way too much into this particular load…..as you do!!
So as I continued to engage in one to one combat with my dishwasher, I loudly exclaimed, “Come on, where there’s a will there’s a way”.
My renewed determination actually worked and with a quick reshuffle of a few bowls, my plate finally found its resting place. Phew! Door closed, button pushed, all done.
Is It Really That Easy?
As I returned to my armchair to rest and recover from my efforts, I began thinking about the old English proverb I’d just used to spur myself on to success.
“Where There’s A Will There’s A Way”
It just rolls off the tongue so easily doesn’t it. I have always lived my life with a “mind over matter” type approach. I’ve always believed that if I was determined to achieve a particular goal, I could find a way to do it.
Generally I could. Not anymore. Not like I used to. Life isn’t as easy now.
Chronic Illness changes everything. No amount of mind over matter or old English Proverbs, cheering me on to achieve absolutely anything, is going to cut it.
Does That Mean I Should Give Up Trying?
Chronic Illness does significantly impact most areas of our lives, there is no denying that.
So should we just give up trying to set goals? Should we put up an “out-of-order” sign and let life pass us by?
No, I don’t think we should. I do think we need to be realistic though about our new capabilities.
I could set a goal of running up a mountain but that would be ridiculous. I’d be setting myself up for failure. My non-union broken femurs are obstacles to that goal that won’t be removed by simply spouting, “where there’s a will there’s a way”.
Even if I searched for a way by perhaps being pushed up the hill in a wheelchair, I would still be setting myself up for failure. I can barely sit in a motorised wheelchair for more than 10 mins on a smooth surface.
Inflammation quickly builds around my broken bones and pain sears as bone on bone begins to rub. My feet fracture just looking at them and I’m not exaggerating.
No, that is not a goal I can achieve no matter how many times I stoically shout “where there’s a will there’s a way”!
So What Is Achievable?
Realistic goals are achievable. There may even be goals that require us to stretch our limits a little and that’s ok.
Let me give you an example. I had a goal today to write a blog post. I am absolutely exhausted, pain is soaring (the dishwasher incident didn’t help) and I have a new foot fracture. I’ve just been diagnosed with a compressed spinal cord at L4 as a result of my rare bone disease progressing.
The compression is on the right side and is a result of a central canal stenosis and a lesion on the right side facet joint. The pain is excruciating and I have a whole new journey to travel in relation to this diagnosis.
So, you get the picture. It’s a tough day. No one is going to care if I don’t write my blog post. I could leave it until next week. It doesn’t really matter.
It does matter though. It matters to me and that’s the key.
When we set goals they need to be achievable but they also need to be something we are passionate about. Something that drives us to want to achieve them.
Those who know me well and follow my blog, know I’m passionate about writing. It’s what I do now. It’s how I connect with others. It’s one of the major activities I use to keep the one part of me that still works active…my brain.
Finding A Way
To achieve my goal of writing this blog, I had to find a way.
Firstly, I had to mentally commit. To do that required me to push aside my first thoughts that crowded my mind. Those were the thoughts that were telling me to just leave it until next week.
I did consider that option. It was a valid option but as I thought about next week, I knew I had other goals I needed to achieve, so it soon became a non-option. That was a positive thought process as it forced me to think about strategies to achieve my goal today.
I determined I did need to find a way to achieve this goal as I knew, aside from any other reasons, it would be a great distraction from my pain.
So I made a 4 step plan:
Take my afternoon pain meds;
Wait for an hour so they kick in;
Write while lying down on my bed, using my phone. (I’ve taught myself to blog on my phone rather than using my tablet or PC. It has removed so many of my writing obstacles).
Take my time and enjoy the process.
Maybe Where There’s A Will, There Is A Way Afterall
If you’re reading this you’ll know I did it! I achieved my goal. My determination, commitment and planning, was rewarded as I persevered and was able to hit the publish button.
So maybe the old English proverb does have some truth to it.
When it comes to chronic illness we definitely need to ensure we are not setting ourselves up for disappointment. Our diseases cause us enough stress and sorrow without us deliberately adding to it by trying to achieve things which are definitely out of our reach.
Don’t let that put you off setting goals though. It’s so important that we feel that sense of achievement. We might be chronically ill but life needn’t completely pass us by.
Find something you are passionate about and set a realistic goal. Or maybe it’s something that needs doing, you have the ability to do, but you’re dreading it. The same principles apply.
Using the word “Simple”, I’ve created an easy to remember planning outline. I hope it will help you achieve goals that might seem out of reach right now.
S.I.M.P.L.E
S – Set a timeframe
I – Improvise where necessary
M- Modify your plan if you meet a roadblock
P – Picture the final outcome as you work
L – Listen to your body if you need a rest
E – Enjoy the process.
Keep your goal simple, keep it relevant to your abilities. Before long you could be discovering, despite chronic illness, where there’s a will, there might be a way.
Take care
Sam xx
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page
Medical Musings with Friends started in January 2017. I was resting one afternoon in my bedroom, contemplating the new year ahead and wondering what possible purpose my life could hold, as my body kept spectacularly attacking me from every angle.
I have a Rare Genetic Bone Disease with multiple bone breaks, ongoing surgeries, severe spinal stenosis compressing my lumbar spinal cord, Rheumatoid Arthritis, Permanent Colostomy due to a bowel prolapse, Fibromyalgia, Sjogrens Syndrome, Trigeminal Neuralgia, an Idiopathic Inflammatory Nerve Disease, plus a few other issues. It can be slightly overwhelming when the list adds up.
I suddenly had an idea, a slightly crazy idea, that maybe if I set up a closed forum for people with chronic, complex and rare diseases it could be an extension of my blog.
A place where a few people could gather to provide support and genuine understanding. A place where it was ok to “muse” about how complex life gets when you have more than one illness.
A place where you know others wouldn’t get scared by what they read but would feel your pain and understand your struggles. A place where other chronic illness bloggers and writers could share their work and words of wisdom.
A few people, maybe 50, or so I thought.
Within 6 months we had over 1400 members and 7 moderators assisting me. We continue to grow our membership weekly which still amazes me.
Unbelievable!! What a blessing, what a purpose, what an honour and privilege, to be trusted to provide such a large group of people a place to find true friendship, support and understanding.
So, I thought it was time to introduce more formally my beautiful team of moderators. They have each provided a short bio to tell you in their own words a little about themselves, plus a photo.
I can’t thank them enough for their personal support and commitment in joining me in this crazy musings journey. They are just the best, most warmest, caring people you could meet and they all volunteer their time while living with their own complex chronic diseases.💗💗
Sam Moss
So, here’s me…I live with my beautiful husband Peter, who is also my full time carer. We live in a stunning Bayside village in South East Queensland, Australia. When I’m not busy chatting with you all on the forum, I’m usually found blogging here on “My Medical Musings” or writing articles.
If you would like to read a little more about me here’s the link to My Story
I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page
I have lived with Auto Immune conditions since I was 11 years of age and they add up to SLE (Lupus), RA, Osteoporosis and Ménière’s disease.
I’m known as Nik Puppykins…lover of two fur baby dogs. I have two, which, in conjunction with my gorgeous Mum, light up my life every day.
(Yes… I live with my wacky, meddling, inspiring, gorgeous, loving Mum ❤️)
My life is positively wonderful and full, despite many episodic hardships over the years.
My motto is:
“One life…live it now, well, with joy and love and inspire others to do the same”
Family, friends, puppy cuddling, photography, market wandering, coffee, sushi, blue cheese, travel (and probably a few other loves I’ve forgotten!)..complete me. 😘😘
Nik Watson ( Australian Moderator)
Dave Head
Hello there my name is Dave, I’ve been married for 9 years, my wife and I have a 7 year old daughter as well as a 5 year old son.
Before the age of 21 I was rather healthy. In 2003 I was admitted to hospital and diagnosed with Ulceritive Colitis which after a few weeks in hospital it was determined I would require an Ileostomy. The Ileostomy is no permanent which is something I don’t mind at all.
In 2007 I was diagnosed with Multiple Sclerosis. This was a significant changing point in my life to say the least. I have been on three treatments for my MS, one of which did cause seizures at least one confirmed Gran Mal.
In 2012, I began to develop issues with my skin on both legs, arms as well as my back. After a number of doctors mis diagnosed the issue I was given the proper diagnosis of Pyoderma Gangrenosum. A very rare skin disease likened to having Ulceritive Colitis on the surface of the skin.
On a daily basis I have issues with my MS, my right shin has lifelong significant damage from the PG. I have come to a point I cannot work Full Time as it simply takes too much out of me. I began a blog in January 2017 in the hopes of sharing my experiences while helping others through their challenges and to understand they are not alone.
I am truly grateful for being a member of such an incredible group of individuals. We all have commonalities and are here to support, encourage and sometimes just listen.
Below are the links to my blog as well as Social Media feedsbforbthosebthat may be interested in learning or asking more.
I’m originally from Southern Ontario, Canada, but moved to England almost 7 years ago, where I met my husband. I used to teach, and gained a MSc in Psychology, hoping to move into a field I could handle with my health. I’m not able to work right now though. I love tea, music, literature and writing, dogs, making cards, and I’ve recently started painting!
I have chronic pain issues, gastroparesis, and migraines with brainstem aura (basilar).
Hi Musers, I’m Courtney and I live in North East Victoria. I have Crohns (with an ileostomy) and Fibromyalgia. My loves include dogs, tea and my family. I try and live by the motto of ‘laughter is the best medicine’❣
Courtney Soutar ( Australian Moderator)
Brigitte Oram
My name is Brigitte but everyone calls me Brig. I have 3 kids (2 teenagers and a tween going on twenty!)
I am generally a positive person, even though I deal with multiple health problems on a daily basis (including a Colostomy named Rosie, insulin dependent Type 2 Diabetes, Anxiety/Depression and the aftermath of Pulmonary Embolisms and an Ischemic Stroke).
Up until 2 years ago, I worked as a Support Teacher specialising in learning support and special education. I absolutely loved it, but I became too unwell and was spending a lot of time in hospital.
I love to make others laugh and have been told I have a cheeky sense of humour. I also enjoy arts and crafts, board games, adding to my owl collection and listening to music.
I feel very blessed and proud to be a part of this awe-inspiring group, I think you’re all so brave and amazing. Thank you for entrusting us with your stories and I look forward to getting to know you all.
Brigitte Oram (Australian Moderator)
Nicole Loffler
I’m Nicole, happily married wife to Ben and mother of two remarkable young people (18 + 21) from Western Australia. My health journey started over 20 years ago, when I was diagnosed with Ankylosing Spondylitis and Ulcerative Colitis. I also have Gastroparesis, Fibromyalgia, Sciatica, Lung Disease and Functional Neurological Disorder.
I’m also in the unique position of being carer for my beautiful daughter Alysha, who has significant health issues as well. It is heartbreaking seeing her so unwell and in pain, but it has given us an extra special bond.
I’m an avid cook, addicted to cookbooks and am a huge MasterChef fan. I grew up on a farm and love animals, especially my beloved 17 year old cat. I enjoy scrapbooking, sewing and puzzles.
Nicole Loffler ( Australian Moderator)
Clare Rayner
Hi, I’m Clare. I live in a suburb south of Manchester, England. I love Medical Musings with Friends because it is supportive, helpful, amusing at times and is so good to be in contact with other people with a lot of chronic conditions! I look forward to helping support you.
The list of my medical problems is getting too long but fundamentally, I have had bad infections since aged 19, was diagnosed with immunedeficiency at 30. By this time I had had a lot of surgery and lung damage. I was physically fit and used to bounce back. On intravenous treatment, I had far fewer infections. Then I developed ulcerative colitis. I also have Hypermobile Ehlers danlos syndrome, causing spinal problems, mast cell activation disorder, low blood pressure, gut and bladder problems. In recent years, I have had sepsis which at the moment has left me fighting infection all over the place. I don’t know how I’m alive sometimes, but I am, and I do understand the stress of living with and trying to juggle health problems! I am medically retired but I teach two half days a week in term-time at the university (communication skills etc-communication is one of my passions).
As some people have out written down their mottos, I thought I’d tell you mine: “never get up with the lark, get up for a lark.” That might be English slang, so fundamentally it means I don’t like getting up in the morning, but I do like to look for something funny in each day. I love going out for coffee, occasionally visiting an art gallery, and visiting family and friends when I can. Love animals too especially dogs and cats. My hobbies are painting, playing the flute and going to the theatre. I haven’t been able to do them for years but I haven’t give up hope. That’s my other motto…”never give up!” .
Clare Rayner – ( UK Moderator)
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to joinMedical Musings with Friends. Feel free to also share the link with any others you know who have a chronic illness and may benefit from a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
One of the wonderful things that has come from living with a chronic disease is finding new networks and friends in the chronic illness and blogging communities.
Before becoming disabled and unable to work, I had no idea about blogging and online support forums and believe it or not I never even had a Facebook account.
Fast forward to today and I am now fully entrenched in a whole new world of blogging network groups and online support groups, either as an active member or as an administrator/owner.
Not to forget Twitter accounts , Pinterest, Instagram and Facebook pages linked to my blog, my personal Facebook account, writing for The Mighty and other publications.
It’s A Full Time Job!
All of a sudden my sedentary, chronically diseased life, looks more like it did when I was working full time in an Executive Management role.
From morning ’til night I am involved in some way in one of these online activities. I love it. There is no denying that. I love sharing, learning and supporting. However, even when you enjoy something there is still the danger of overload and burnout.
I have to constantly rest my body because of my physical disability but what about my mind? Do I rest that enough?
I asked myself that question this morning and very honestly answered, “No, I don’t”.
I wonder how many others in the chronic illness community who are bloggers/writers, administrators or active members of support groups, are feeling like their minds are just a little too full of chatter?
It’s Ok To Switch Off
As I “quietly “mused upon that question, clarity began to surface.
It’s ok to switch off. It’s ok to have a “chronic illness” free day”.
In fact to do so will mean that you will add more value to conversations the following day. You’ll approach situations with better clarity.
It’s ok not to blog for a week or two.
It’s ok to step aside from forums that you perhaps feel are not right for you anymore or they have just served their purpose.
It’s ok to say “No” if asked to be involved in something new within the chronic illness community that would just over stretch you.
It’s ok to commit to one or two things solely and just give them your all. In fact it’s probably better to do that.
Switch off your phone, tablet, laptop. Listen to the quietness when you do that. Take a deep breath and just enjoy that moment when you let your mind rest from the social media world.
Ahhh…it’s so refreshing. Clarity is a wonderful thing.
Give Yourself Permission
I’m going to make some changes. I love my forum and that’s my number one priority. I do though need a day off once a week and I’m going to take it. No set day as I want the freedom to go with the flow a little, after all I’m medically retired so surely the regimented lifestyle should be a thing of the past.
I want more time to quietly write. Writing helps me relax. For me it is a reflective process but when there is too much filling my mind it’s hard to listen to any inspirational ideas that might be lurking in the recesses of my brain. Thinking time is essential for clarity to emerge and writers block to be broken.
So I shall still happily emmerse myself in the chatter of the chronic illness networks and blogging communities that I love. However, I will now also be making every effort to ensure I take time out each week, to clear my mind and enjoy some clarity of thoughts.
If you are feeling like your blogging or online work is overwhelming you, I’d encourage you to switch off for a moment. Think about how you can better manage your time and involvement in social media activities and networks.
Assess what’s working for you. Is it still relevant to your needs? Do you need to make changes? Is it adversely affecting your health?
“By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work.”
Genesis 2 v 2 NIV
Give yourself permission to seek some quiet space. I’m so glad I have. It has been such a refreshing experience to have a reality check and make changes to how I manage my writing commitments, my blog and forum.
I still haven’t quite got my online/real life balanced yet but I’m on the right track and that’s got to be a good start.
Take care
Sam xx
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
It’s no secret I love writing. Throughout my career the thing I loved the most was communication, both written and verbal. To me it’s about connecting, making connections, renewing connections, allowing people into my life.
That’s certainly been my goal with blogging and writing articles for a number of publications, including The Mighty and Blogs by Christian Women.
My public writing is centred around my health journey, the mystery of it all, the onslaught of it all, the victories and the set backs.
Trying To Make Sense Of It All
Writing helps me to make sense of all the challenges my health issues throw at me, something even my Specialists are battling to do!
During one of my hospital admissions, my Specialist came into my room with a concerned look on his face and asked,
” Did you murder someone in a past life because it doesn’t seem fair to me that such a lovely lady should have to deal with so much”?
He was right, it doesn’t make sense that many, not just me, suffer from horrific chronic diseases. There is no rhyme or reason as to why one person has perfect health and another doesn’t.
“For God makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust.”
Matthew 5 v 45 NKJV Bible
So to think in terms of fair or unfair is not helpful.
In my mind to be proactive in the midst of the suffering is helpful. That’s where writing comes in.
The Difference Between Blogging and Journaling
Blogging is like my work, my new career. It’s a place to record “My Medical Musings” and share with others the coping mechanisms I have discovered through my own experiences.
It’s a style of writing that connects me with others, through social media, linking with other bloggers and engaging with comments on my blog posts from my readers.
The blogging world is a writing community and it’s wonderful to be a part of it.
I’m actively involved with the Chronic Illness Bloggers Network, where we share our latest health journey article weekly. More recently I’ve joined Christian blogger networks, like Grace Girls and Salt and Light Link Up, where faith stories are regularly shared and writers encouraged in their work.
There is another kind of important writing that I do that I find incredibly healing….Journaling.
The Joy Of Journaling
My journal is private. It’s where I bear my soul. I tell my journal anything and everything. I write frequently but not regularly. Sometimes once a month, then maybe every week for a while or I might put it aside for six months. It’s where I go when I need to release how I really feel.
It captures my highest joys, my deepest hurts, my dreams, my hopes. It is healing.
There are no rules to journaling. You can write in any style you like. No one will edit it or comment on it. It doesn’t matter if it has spelling errors or illegible writing.
You can draw in it, record favourite quotes, keep special cards or notes from friends to look back on when you need encouragement.
It is your own special world and it is a wonderful thing.
In this era of online sharing where nothing seems to be “off-limits”, it is so important to keep some essence of privacy. Some place where you can just shut the door on the noise of life and allow your innermost thoughts to be heard.
Journaling allows you to do that.
It’s like a form of prayer for me. Only God knows what’s in my journal unless I choose to share it with someone else. That’s a precious, special thing.
You don’t even need to be a “Writer” to journal. It’s for anyone.
Buying a new journal could be a little treat to yourself.
As you open the first page and record the day and date, an opportunity awaits to express yourself like never before. An opportunity to find a sense of peace. An opportunity to start the process of emotional healing and well-being.
Happy Journaling 💗
Sam xx
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I am really excited to introduce you all to my Guest Blogger, Rachel Fearnley.
While Rachel doesn’t live with a chronic illness herself, she is passionate about raising awareness of what it’s like for families who live daily with someone who has a life limiting illness.
Rachel is a social worker who has worked with children and families for over 30 years. Her primary research interest area relates to parental life-limiting illness and the impact on children and families. Rachel works as an independent researcher / consultant and has recently written her debut novel which is about a family coping with life-limiting illness. Rachel’s website is – http://www.rachelfearnley.co.uk
I hope you enjoy Rachel’s Ponderings
Take care
Sam xx💞
Our Family and IT – Ponderings of a Passionate Maverick
How do parents tell their children that they have an illness that might not be curable? How do people contemplate having that conversation, which, let’s face it is probably the hardest conversation they will ever have to have?
These are questions that have interested me since I completed my PhD in 2010. I have worked for over thirty years with children and families in social care and have loved (nearly) every minute of it. My last ‘proper’ job was as the manager of a Barnardo’s family support service in the UK. We provided preventative support to families with young children (under the age of 8 years) and it was the most brilliant job. It was while I was there that I became increasingly curious about how serious illness, dying and death impacts on family life. I was regularly hearing stories from mothers about how following the birth of their babies they were struggling to cope with significant bereavements from their childhoods. In one of my headstrong moments I decided to apply to do my PhD (there are some notable events in my life where I have ‘done first and thought second’!). My research explored children’s experiences when a parent is at the end of life. It was a qualitative study as I wanted to hear the voices of children and young people and wanted them to have a platform to tell their stories.
After completing the research I started working as an independent researcher / consultant. During this time I have been employed as a part time Teaching Fellow and worked for different national and local charities where the emphasis is on life-limiting illness. I have written an academic book (Communicating with Children when a Parent is at the End of Life – Jessica Kingsley) and developed a resource for professionals working with children and families (Let’s Talk About Dying – Speechmark). In addition I have set up (sadly unsuccessfully) a local support group for children and families, and have delivered training sessions in universities to social work students.
Throughout this time I have been trying to raise awareness about children’s lives when living with a parent who has a life-limiting illness. There is beginning to be more support and recognition for bereaved children which is excellent, however, there remains very little for children who are living with an ill parent. This saddens me greatly as children often struggle during the illness because of all the changes and challenges that typically accompany illness.
My latest attempt to raise awareness is through my debut novel. Our Family and IT, is about how a family tries to cope following the mother’s diagnosis of a life-limiting illness. Although it is about a fictitious family the changes, challenges and issues that they are forced to manage are very real. I hope that people read the book and take time to think about the story. What support does the family receive, what support would they like and how do they manage some very difficult and painful situations? The book has been influenced by my PhD and draws heavily on all my research and work experiences. Writing it has been a challenge to balance ‘a good story’ with the desire to use it as a platform to describe some serious social issues. However initial reviews are very positive and reassuring. The book was (self) published in May 2018 and sales have been steady so far.
So what next for a passionate maverick? I think my priority is to stick with the social issues that are important to me and use the privileged voice I have to speak for those whose voices aren’t always heard!
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page
