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.  

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.