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.

My Disability Journey: Physical & Mental Recovery

When bones are broken it is visibly clear to everyone that something is wrong.  It can be labelled and is tangible - people understand instantly - "Oh... you broke your hip.  How awful".  It is somewhat sad to acknowledge that the same cannot be said for mental illness.  This kind of illness is not visible, you cannot undergo an operation or be put in a plaster cast to heal and many, many people do not understand the suffering and isolation that such illness can cause.

For me the physical trauma was instant.  A cause and effect could be identified.  I find the anxiety and mental illness that I experienced a much harder illness to quantify.  It was a gradual, silent thief which stole my identity and my spirit.  I have always been a perfectionist character - an achiever by nature - I set goals and did my best to achieve them.  But my illness exaggerated this personality type until I became ridiculously self critical.  The expectations I set on myself I believe were a major part of my downfall.  To 'make up' for the fact I couldn't walk I over compensated enormously - I gave every bit of myself to motherhood.  Months in to my physical 'recovery' I couldn't understand why I was happy in so many ways yet something beyond the physical just wasn't right...

We were  isolated from family.  My mother was AMAZING - but was she going to live with us for the next few years? No.  She had her own life to live - and I had reassured her endlessly that I would be fine. Friends?  Well, you certainly find out the people who are important in life.  Those that will be there for you. Many others dropped away as things became hard.  On reflection this was a hard but invaluable life lesson. I was unable to drive - I'm still not legally able to drive a manual car (which we had at the time).  Now of course I drive an automatic but it was a good 8 months before we were able to replace our car.

Consider - you cannot walk... you cannot drive...  you have two children under two.  Four precious friends picked me up and gave me lifts to toddler groups or play dates when I was able.  And when I got my car the freedom was liberating!

When asked how I was I responded, "I've got two wonderful, healthy children, I'll be alright".  Other mums would say "I don't know how you manage".  That phrase would come out on automatic pilot hoping that that would end the conversation about me as anything deeper would promote an emotional response which I so wanted to conceal from the outside and because what would happen if I admitted I wasn't alright?  I wasn't thinking about how I felt - I always responded about my physical symptoms and how I was expected to be getting better.  So even though I wasn't I could still behave like I was.

When Little Man failed his health checks my heart and my mind broke.  I'm not prepared to talk about the details of Little Man's illness but it did involve his brain - a form of hydrocephalus, and at 18 months we nearly lost him.  So much pain and fear... yet running alongside wonder and love in the miracle of life.  He was only 8 weeks old when he was diagnosed.  [Thankfully, LM's condition improved once his skull fused and after some tough times he overcame the challenges of the first 2 years of his life.]

I put myself under too much pressure to 'soldier on' and I felt enormous [self inflicted] guilt about the trauma I put my family through and what I was causing them to miss out on in life.  But if I'm completely honest, without my family I would not have survived.  I am a mother first and foremost.  I had children to get up for and a reason to keep fighting for things to get better.  My children needed me and I was doing well in fulfilling their needs.  But on reflection, my anxiety had become an obstacle in my recovery (compounded by very real health concerns for my boy) meaning I lost perspective and worried excessively.

As the weeks went by we started to question...why wasn't my condition improving?  Why wasn't I able to walk without help or pain?  Why were none of the treatments working?  I'll always remember one consultant stating dismissively over a year after the accident, "These are long and painful things".  Yep, got that.  Just tell me when it's going to end.  Yet we continued to search for answers.  It felt like our adult life was solely about finding that answer.  It seemed to consume every [non-mothering] waking moment.  Do I feel less pain today?  Can I walk a bit easier? Is the physio, acupuncture, medication, hydrotherapy helping?  What else can I do?  Whilst our family life was happy and content my physical condition was terrible - and was having devastating effects on my mental health and many aspects of my relationship.  I was diagnosed with depression and exhaustion in large part because my body could no longer function in the extreme level of pain I'd be trying to cope with.

Two operations later with little improvement (each with additional pain and lengthy recovery) we sought a second opinion privately.  This was my epiphany. When the endless search for things to change ended. And it was not a miracle cure or a magical drug... 

Acceptance was the key.

Of course, acceptance was a process.  Probably a two year transformation.  It took time to come to terms with this new normal.  I mourned the loss of my mobility and this took time.  I mourned the loss of the life I was going to have, the woman and mother I was going to be and this too, took time.  I underwent counselling as part of a Pain Management Programme, which was life changing in how I view and value myself.  And after that grief came acceptance.

Acceptance: that my central nervous system is damaged and my pain receptors having received acute pain for so long are frazzled and stuck on high.  They feel extreme pain even when they shouldn't.  There is no miracle cure.

Acceptance: that my pelvis, left hip and soft tissues are damaged and cannot be mended.  A replacement will be required at some point anatomically but this will likely not improve pain levels due to acceptance of #1.  There is no miracle cure.

Acceptance: that life has changed beyond all recognition.  My career is no longer an option.  Financially we are markedly worse off. We have been through an awful trauma which has taken its toll on us all and this cannot be undone.  But our life continues, I can give more quality time to my children and we are grateful for that.  Why should it follow that our life should be unhappy because of some unhappy and challenging elements in it.  We choose how we respond, challenge ourselves and grow.

Acceptance: that the accident was no-one's fault.  No-one is to blame or should feel guilty.  Life happens in the blink of an eye.  Many, many people are in far worse situations and we are thankful for being able to live our simple life.  That we need to rebuild our lives, be kind to ourselves and slowly things must improve.  Guilt is a waste of energy.

Acceptance: that love prevails.  My best friend...  yes we love each other.  He sees past my physical incapacity.  Everything has changed and yet the important things remain - our love and the essence of who we are as people, how we want to be as parents.  It is a deeper love to be nurtured, beyond the physical or surface.  It embodies how we live now in a far greater way than it would have done had the accident not happened.  Our minds have been refocused on what is truly important and what brings happiness in life.

Acceptance: that I am a good mum.  That throughout my illness and recovery despite it all, I was and am a good mum.  I always loved and fought for my children.  I failed for a while to look after myself.  I have learnt from that and am a better mother because of it.

Acceptance: that we must look after ourselves in order to be best placed to look after others.  We must be kind to ourselves.  This is not the same as being selfish.  But consciously thinking you did something well, or you deserve a cup of tea in the sunshine, or will buy that magazine you've been craving - all contribute enormously to our mental well-being.

Acceptance: that worry does not make you better.  It does not change things.  It saps energy and drains mood.  It makes you ill.  Try to let it go and only consider the things you can influence and change - anything else is a waste of time and energy.  Making a conscious effort to do this can break this habit and lead to more positive behaviour.  This was a break through for me.

It literally felt like I had been given the key to my emotional freedom.  To enable me to stop searching for a cure or for something that was going to make me better.  In fact, the message was much more basic than that - to accept my physical condition, medicate my pain and to try to make the best of our life.  It is only in the journey to recovery that I have come to accept each of these factors.

And that was the beginning of consciously appreciating the Simple Things.

Nearly seven years on we have lots of joy in our lives.  I am thankful for the changes that experiencing those years have stimulated.  Yes - I suffer from crippling pain.  I am and will continue to be physically disabled. We manage our life - what we do, how we do it with this in mind and of course it places enormous limitations on us.  But. There is so much good in my life and I am free to really SEE and embrace it.

It's not always easy... sometimes I need to refocus and remind myself what is important in life. Sometimes how other people are able to live makes me question the choices we make - but that would happen anyway. I have time... So I love with all my heart and I am loved completely in return... and I do feel blessed.

J9 x

To read the first in this series My Disability Journey click here

My Disability Journey: The Accident

I've tried to keep emotion out of this and relay the impacts fairly factually.   I hope it will position the accident and the emotional / physical responses I want to discuss in the next part of this series.  I hope it briefly explains what happened (and how it continues to affect me) and most importantly in the reflection element (third in this series of posts) I'll talk about tools I've found to help me cope.

On 19th June 2007 I slipped on the decking in my back garden.  I was 38 weeks pregnant with my Little Man at the time.  My left leg slipped out unnaturally to the side at speed and although I did not fall to the ground, the force of my legs doing the splits horizontally (literally the way your hip doesn't extend) combined with a heavy baby / pregnancy hormones resulted in significant injuries.

A freak accident, taking only seconds but it changed my life forever. 

I knew immediately something bad had happened.  Little Lady was 20 months at the time and was by my side when I slipped and I managed to stay calm and tried to call out to my neighbours over the fence.  I was admitted to A & E at the local hospital where I was examined, the baby was confirmed well and unscathed and I was given a bit of gas and air to deal with the pain.  I was unable to walk or stand and any movement (of myself or the baby) was agony.

Later that day I was transferred to a larger city hospital for an immediate cesarean section.  For whatever reason, by the time I arrived the Doctors had decided not to undertake those steps.  I was examined but was not x-rayed as baby was inside so it was a judgement call as to what was best.  I was placed in a side room with a bed and commode.  This was to be my prison for the next week.  I was in immeasurable pain - every movement was agony and this was compounded by baby moving inside me.  I moved only inches during those days - having injections to avoid clotting.  I fainted through pain alone twice and plea'd for them to give me a cesarean every day.  The hospital was well over an hour each way away from our home and so I only had a visit once a day.  It truly felt like a torturous prison cell yet the wonderful baby moving inside me, my glorious girl and my best friend gave me hope.

Seven days later I had a C section and my beautiful boy was born - a gorgeous blessing.  It was also the first time I could be pain relieved properly and in the short term this was a huge relief.  I was then x-rayed and the Doctors realised the true extent of my injuries.  I had broken my pelvis and my hip and ruptured my symphis pubis so nothing was holding either side of my pelvis together.  I had only had paracetamol to treat the pain until this point and still could not put any weight on my left leg.

The next four days passed in a blur in that same room... but were far happier.  Little Man slept in my hospital bed between my legs as I was still unable to walk to get him from the bassonette and we were very hopeful for full recovery thinking that the nightmare would soon be over.  I was then transferred back to the local hospital and although physically I was struggling I was closer to home and that made visiting easier for everyone.

However, I then had a number of further health complications after his birth which meant that my lovely boy was discharged home while I stayed in hospital with a super bug unable to have any visitors for a further 5 days - including my lovely children.  I was so ill I genuinely thought I would die.  After the peak of this illness my milk came in and baby was miles from me.  Gladly though, I recovered from the super bug and was allowed home after a full occupational health assessment.

When I returned home I was only able to walk a few slow and painful steps on a frame with the pain medicated by lots of meds including oral morphine.  Of course, I could not feed baby from myself due to potential health implications for Little Man and subsequent opiate withdrawal.  We put a bed in the lounge.  My mum came to stay for 2 months to help me with the children [and my supposed recovery] for which I will remain eternally grateful.  The hubby had used all his paternity leave during the time I was in hospital - so without Mum and his help - I don't know what would have happened.  Little Man had his own health problems highlighted at the 8 week check and it was at this point that my emotions took a set back.  It was the last straw on a very heavily laden camel.

After the first month I began to feel pressured to recover.  I was asked daily - if I was feeling better, were my movements easier, and this combined with helpful suggestions from well meaning friends of 'needing to get out' meant I forced myself to do the baby groups, soft play...  The more I did this, the worse my pain became and the lower my mood sank.  I became terrified my children would be taken from me and so channeled Super Mum.  I masked my symptoms from all but my closest friends and family and would return home to collapse sobbing in a chair - unable to walk for the next few days and emotionally exhausted.  When people asked after my improvements I used to say "I've got two wonderful, healthy children, I'll be alright" like a mantra - a phrase to live by.  Then as the implications of Little Man's health became clear and suddenly one of my babies was not healthy my heart and my mind broke.  Not right there and then but little by little over the next year.

Around 2 months after the accident, I was diagnosed with Post Traumatic Stress Disorder and continued to have flashbacks to that hospital bed where I'd lain in agony for months afterwards.

Of course, I prioritised Little Man's health above mine and the numerous trips to Bristol Children's Hospital combined with both of our Doctor appointments it felt like we lived at the Doctors.  Slowly I became engulfed by worry.  Who I was as a person became lost.  I knew something was wrong with me mentally but kept trying to think my way out of it - to rationalise myself well.  But of course that didn't work.  I was unwell mentally and physically and finally accepted treatment for anxiety and depression.

 

After that first year...

... I was diagnosed with early onset Rheumatoid Arthritis in many of my small joints as a result of the trauma that my body went through.

Between age 3 and 4 Little Man's condition thankfully became less acute and the fear could start to subside.

Six years on I am unable to stand on my left leg without medication and take a prescribed cocktail of drugs to help manage the pain including slow release morphine and oral morphine.  My physical condition will not improve in future but I have learnt to live with my new capabilities.

I have replayed that fateful day in my head so many times.  I had huge guilt and regret associated with the memory - "If only" and "what if" were all consuming sticking points in my emotional recovery for a long, long time.   This is probably the biggest element of my healing in my road to recovery and I'll talk about that in the next part of this series: My Physical & Mental Journey.

I guess if I wanted someone to take anything away from these revelations it would be to smile at the stranger who looks a bit distracted; show kindness to people at the park or on your street; send that text or make that call you've been meaning to.  It may just be that little thing that makes life for that person that bit brighter and make a small difference.

I'll continue with the next post on My Disability Journey next week.  I've relayed these events fairly factually and avoided adding emotion to it - apologies if it reads a bit like a time line of events.  The next post fully encompasses my recovery journey and I'd rather focus on this but you need the facts to be able to make sense of the rest!  Take care for now,

J9 x