Tuesday, 10 June 2014

My Disability Journey: A Reflection

As promised, this is the last in my series on My Disability Journey.  Of course, this does not mean that the journey is over - it is not a destination to be reached but more a change in circumstance to manage our life around.

In journalling my family life I sometimes refer to my disability, reduced mobility and pain issues in relation to 'my accident' and had not previously explained it in my blog.  I aspire for my blog to be a positive space and to be an escape from harsh things in the world - to reflect my personality, creativity and especially to store memories of moments in time. 

However, my journey to where I am now was certainly affected by my accident...  so it deserved being explained.  I was concerned about doing this and didn't want pity - people go through a whole lot worse and we all have things in life that we struggle with.  But living through and overcoming these challenges can give perspective if we open our minds and try to release all those negative emotions and implications.

It may seem crazy but (on reflection) in some ways I give thanks for this journey - opening my eyes to a different way of living and to freeing me to be a homemaker and stay at home nurturer of my family.

My life before 19th June 2005 has gone and I've accepted that there is no route back.  I honestly tried to return to that life for almost 2 years post accident.  We saw numerous doctors, I had a couple of big operations but now this is the new status quo.  I still challenge it at times and go through a whole cycle of trying to prove I can do more than I am now capable!  My cycle looks a bit like this and some of you may be able to relate to elements of this!:

increased activity (I'm stubborn and try to push it) = more pain = NO mobility = enormous levels of pain = low mood = not coping with pain = isolation/ feeling inadequate/ useless = incapacitated... leading to: body dictating rest = gradually improved pain levels = managing reduced activity levels properly (pacing) = improved mood = improved pain management = feeling in control and more capable = achievable and maintainable physical and mental health.

I try to learn from each time I do this and one of the big learning curves on a Pain Management Programme I undertook was to be kinder to myself in terms of my own expectations from myself and allowing myself time to recover when needed.  Plus it is since I let that 'old' life go and left the desire to return to what was, that I've been able to embrace a simpler future and a more content present.  [The link above gives details of UK programmes - I was referred by my GP and I found the Programme I undertook at Frenchay Hospital life changing in helping me deal with my situation.]

It has been a hard journey and we have all struggled along the path at times.  I know too that it is hard to see someone you love in pain or see that person unable to participate in family activities or previous hobbies they were passionate about.  I do feel for anyone in this type of situation.  This type of change is really hard.  I hold on to knowing that I am alive and am hugely grateful for this but my disability has been a huge adjustment for us all - myself and my husband especially.  For Little Man - he's never known me as an able bodied person and Little Lady - she can remember me running with her, bless her. Despite all my progress it still brought tears to my eyes typing that.

Far worse things happen to people I know and this was our challenge.  It has taken years to heal the emotional scars and the physical damage to my body has healed badly.  But we have faith.  We are a happy family despite this.  I genuinely believe we've learnt to value our time in our home and on this earth more as a result of living through this challenge.

The human spirit is astonishing.  I'm sensitive and I struggle to deal with people's judgement or their thoughtless comments.  Adding in the variability of my condition can lead to an unpredictable physical and mental state.  This and the pain - which is a constant issue.  It's hard but I choose to try to be happy.  Life is good.  I am alive.  I have two beautiful children that I did not think I'd ever have.  I have a loving, compassionate and understanding husband.  We have filtered out the fru fru of life and re-prioritised accordingly.

On reflection what have I learned?  Well-being is something more comprehensive than physical or mental health.  It is these two things working in balance together that determines how we manage or feel.  It is different for all of us - as are life's challenges but I try to follow this basic approach:

  • Be kind to yourself.  
  • Keep going... but  
  • Pace yourself.  
  • Build a relationship with your Doctor and use prescribed medication to help you manage pain / mood if necessary.
  • Don't let resentment or guilt overwhelm your thinking.  
  • Try to let go of "I used to be able to...."  
  • Don't be afraid to ask for/ or accept help from friends and family if you need it (it is not a weakness).
  • Consciously recognise and be thankful for the small things in life that can bring happiness.  Project Gratitude was a big part of my emotional development post accident and we can all do this on a scale that suits us (for example the Friday Happie's inspired by Gillian)
  • Try to embrace the present... ...however challenging because as humans we have the capacity to continue to learn and grow despite adversity.  

Sometimes we need to hurt in order to grow. We must lose in order to gain. Sometimes, some lessons are learned best through pain

For a long time I looked back at how I used to be (career, physically, mentally, financially - you name it) and then I looked far ahead (the constant search for treatment or a magic cure).  Now I have learnt to allow myself to be fully present and enjoy an activity at a pace that keeps me well/ happy (scientists have proven that the state of 'flow' can reduce pain messages being received by the brain).

Regardless of how golden other people's lives may look EVERYONE has stuff going on at one point or another.  Allow yourself time to meditate, heal, pause... and then engage with life.  

I often see honest expression across the web of frustration because pain or incapacity is stopping someone doing something they LoVE.  I completely empathise with - and understand, this sense of utter frustration due to lack of control, pain, resentment, change.  It is hard to be out of control of your own physical health, being restricted in activity or having to sacrifice something because for whatever reason you have to for your health.  I experience this daily and it is hard to focus the mind on what you can do rather than focus on resentment and regret.  It is natural I think for our ability to do this to change over time (external influences or other stresses all have an impact) being aware of this though can help us make those conscious adjustments to our focus which over time can become habit.  

In fact, scientists have proven that our inner thoughts affect our emotions, which affects our hormone production, which in turn affects our mood.  If we try to see positives or be grateful for the good things, our focus can shift (as does hormone production) and our overall well-being improves.  I believe this is honestly why I've found that my personal gratitude for the Simple Things is integral to my own well-being and recovery.

These are my thoughts on coping and continuing to try to live fully.  Some people may not relate or agree, which is fine too.  This is just based on my own experience.  I've read a few self help books, had a bit of counselling and consciously studied what has worked in my own physical and mental recovery over the years but am certainly NO expert.  Perhaps I'd suggest to try and be open to what may work for you - and be aware that this too may change over time?

So this was my disability story.  I wanted to 'place' my disability.  I wanted these posts to give hope to other people struggling with disability or pain.  Ours has not been an easy path, but it has been an enlightening one.

I wish you all health and happiness... and where one of these seems elusive... I hope it helps to know that you are not alone.

J9 x

If you'd like to look at other posts in this 'My Disability Journey' series please look here and here.


  1. Janine, I think you're very brave to write about your situation and to share what you've been through in the recovery process, both mentally and physically. I am sure it hasn't been easy. It sounds like you've made lots of progress and can be really helpful to others dealing with similar challenges.

    1. Bless you Jennifer - I'm so sorry that I keep meaning to email you on a more personal level re this series of posts - time eludes me but I value and appreciate your honesty. Hugs, J9 x

  2. I think that your words are very wise and very positive. Living with pain every day is very hard and takes a great deal of effort and work, but I can see that you are working harder to deal with it in the best way that you can and that your body allows. It is very hard to let go of the what might have been and move on to the what is now and what will be in the future despite the past. I can do no more than say that I am very proud that you have written these posts and I truly believe that anyone who is in a similar situation to you and finds and reads them will be inspired and that is an amazing thing. I realise that it isn't why you wrote them, but it will be a good outcome. xx

    1. Thank you for your lovely kind words Amy. You are right that living with chronic or acute pain is tremendously hard. It is interesting to me that the purpose of these posts did change as I wrote them. I do genuinely hope that there is something helpful here to anyone struggling with pain or physical impairment. We are all very different individually but hopefully there is something in my situation which on reflection will help another. Strangely I'm struggling to follow my own guidance this week but I try to refocus and re centre life again!! Take care, J9 x

  3. You've hit the nail on the head with your approach Janine and I love that quote x in a really funny way both Paul and I have gained so much from our disabilities and these simple things are what keep us going through the darker days. I'm glad you shared your story thanks once again xx

    1. Hi Tracy - thank you for your comment. I love this quote too and it puts it far more eloquently than I could!! I guess it is how we choose to live through and overcome these challenges which determines the quality of life that we can have in time. I think dark days do and will come - for anyone but especially if one is struggling with pain, mood or disability but trying to practice gratitude does help - it's great that you've found this too. Thank you for sharing, J9 x

  4. Hi Janine, I'm just stopping by to say how delightful your blog is. Thanks so much for sharing. I have recently found your blog and am now following you, and will visit often. Please stop by my blog and perhaps you would like to follow me also. Have a wonderful day. Hugs, Chris

    1. Hi Chris, thank you for stopping by! Lovely that you've found my little bit of blogland. Will pop over and say hello!! J9 x

  5. Thank you so much for sharing your story with us and I continue to have nothing to say in the face of your awesomeness in dealing with this the way you have. It is, if you don't mind me saying, quite inspiring.

    S x

    1. Oh Sandra - that is so very kind of you to say. I am touched by some of the responses I've had in relation to this series of posts - quite unexpected. Hugs, J9 x

  6. Hi Janine (again!) :-)
    After reading through all three of your Disability Journey posts, I still can relate even more - I had to smile when I read you were 'struggling to follow your own guidance'! I have moments like that too. The intellect knows what one needs to do but sometimes the heart tries to over-ride that. I agree with all of your words of wisdom, having come to similar conclusions myself through my own journeys. Wishing you all the best and may you find joy in every day.
    Hugs, Jodie xxx

  7. Afflictions are part of everyone’s journey in life. I’m glad that you were able to surpass those circumstances after your accident. I know how hard it is to accept that kind of situation not just because it limits you to do anything, but also because of the risk of judgment and criticism from other people. But look at yourself now, and you’ll realize how your disability made you become such a strong person both physically and mentally. Your story is such an inspiration to those who are struggling with disability, as well as to those normal people who haven’t found the meaning of happiness yet. Thank you for sharing your journey, Janine! I wish you all the best!

    Jason Hayes @ DECORM