Thursday, 27 March 2014

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.

SAMe for depression

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.

so very true. be kind.

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.

You deserve to take care of yourself. #edrecovery #selfcare #heal

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

6 comments:

  1. Thank you for sharing your story, Janine. I didn't comment on the other post but I read it with great interest. I wanted you to know that I understand a lot of what you are going through because I live with PTSD. For me, it's the result of very traumatic pregnancies and births, due to serious complications. I was told it wouldn't happen again after the first time, so we had a second baby but it did all happen again, the complications. The whole experience was horrible and terrifying, both times, and obviously I'm done having babies. But the fear and stress and anxiety have not gone away and I don't think they ever will fully dissipate. My first child was also born with serious health problems, which are ongoing. He is generally healthy but he needs a lot of monitoring and medical checkups and tests to be healthy. When I had him, I went home to be on bedrest until he was six weeks old, only leaving the house for his medical appointments or my own. I had no family nearby (other than my husband) and friends weren't too keen to help out when they realized how big our problems were. I became very isolated and I learned to be alone. A year later, we moved across the country to a place where we knew nobody. So I've learned to be alone, and while it's sometimes lonesome and I crave support from others, I also know that I've been through things most people can't even imagine and it has made me appreciate my life and my little family all the more. I'm sorry you've been dealing with this situation for so long. I wish you all the best with your recovery, physically and mentally. I'm always around if you ever want to talk about it.

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  2. Thank you so much for sharing your story here Janine, as I am sure that it will be a great help and inspiration to others who are going through difficult times in their lives, whether the situation is similar to yours or not. What you said about friends is so sad and so true, but finding the people who really are there for you is wonderful. I cannot imagine what you have had to deal with, but I am so glad that you are coming through and that I can get to know you a little and be inspired by your story. Thank you. xx

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  3. You have poured out your heart. I'm at a loss of words to respond to this, everything I want to say sounds useless. I started to read your first post on your situation, but I'm sorry, I couldn't read it. It's enough (for me) to read this second post to understand the incredible difficulties you've been living through. A terrifying ordeal that no one can possibly appreciate unless it's happened to them. I'm so glad for you that you were able to bring yourself into a place where you can still enjoy life and can share it with your loved ones. It must take incredible discipline to stay rooted there, and I admire you greatly for what you have been able to work through ... both physically and mentally. I think the things you have said here will resonate with, and help others who are maybe going through troubles of their own. We really don't know what people are dealing with on a daily basis in their private lives, do we. I imagine these posts have been very difficult to write, and I just want to say thank you for sharing. Wendy x

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  4. Like September Violets, it's hard to find words. They all seem quite inadequate in the face of what you've been through. You do have my utmost respect and admiration though, you have achieved so much to be able to write these words and share your story, so thank you.

    S x

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  5. I found this post quite inspirational, in reading about your journey through your trauma and your acceptance. I'm glad you are happy with the important things in life. I'm so sorry that you have so much pain and difficulties. Thank you for sharing your story, I have found strength and good advice in your words. Wishing you and yours the very best.

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  6. You are so right about acceptance after dislocating and breaking my elbow back in 1994 it took me quite a while to accept that it would lead to the end of my police career at 24 I felt there was anything else I could possibly do on the positive side I would never have met my best friend and husband if I hadn't been injured. We celebrate 20 years of marriage this year. And then about 8 years ago we had to accept changes in a lives again when my husband was diagnosed with psoriatic arthritis. This diagnosis has changed our lives completely and with three children we have had to make many changes. What I find is that we have to do what is right for us as a family and not worry about what every one else is doing. There are just some things we can't do anymore. But we spend lots of quality time together and that has made us stronger together doing what we can when we can. It has taken a long time to get to this point and we have good days and bad days but acceptance that we cannot changes these things is one of the biggest things we have had to deal with. Thank you for sharing xx

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