Wednesday, 9 January 2013

How did the Carer Cope?

It occurred to me that I have updated you on Cameron and shared with you the unexpected impact of being a sibling of a brother with special needs but I haven't shared how the carer has been coping.

It's been a big year which at one point had me declaring it was almost worse than the year Cameron got sick. Like MLA my stresses were mounting up and then a final straw broke the camels back. I was exhausted. I kept sacrificing what I needed for my child/children and lots of other people and situations and my energy levels dropped lower and lower. I started doing whatever I could to survive and I was coping with less and less.  Then I discovered I had Adrenal Fatigue.

Raising a child with special needs is physically draining and sleep depriving and worrying and all consuming and slowly, slowly as the years have gone by I have watched myself disappear. At times I can't even remember what I used to be like which leaves me questioning sometimes if my memories of myself are true or just a dream. The old me pops out from time to time but I don't really do the things that used to fill my soul, make me happy and make me who I am anymore.

I was feeling so overwhelmed by everything I couldn't cope with anything anymore which made me feel overwhelmed even more because I was used to juggling so many balls at once. I was upset and sad about everything being so out of control but I still felt positive about life because there was so much good happening too. It was a little confusing.

I became forgetful and extremely reliant on my diary for fear of forgetting anything and everything was left to the last minute. I wasn't as organized as I used to be and consequently I haven't seen my extended family and friends as much or stayed in contact as well as I have in the past and that really upset me.

This didn't happen over night, it slowly grew over several years but escalated over the last twelve months to a point where I was either going to crawl into a ball and rock slowly or change my life and embrace living again.

Several,things happened that saved me.

As a family we changed our diet dramatically which helped all of us and I stepped down from several of my volunteering positions. It took me a while to get used to the idea that I didn't have other responsibilities and I could focus on me and my family and I'm still getting used to that.

The result of all this change was a realization that I had become filled with fear. I used to take risks, plan for the future and reach for the sky and now I was scared to make changes and had become paralyzed with fear. The fear had crept in slowly but it had really escalated over the last few years.

Suddenly I grabbed life with both hands, jumped out of my fear and embraced life again. I've stopped worrying about the future and instead am trusting that everything will work out and be alright just like I used to.

My body is healing. I'm still exhausted and need more time to heal but I'm aware of that now. I know I'm bad at making me a priority and looking after myself - I always put everybody else first but it is time to change that and  I am hoping that in 12 months I will be able to say that I have made me a priority this year and looked after the carer for the first time.


  1. I am sure that I had adrenal fatigue; it all kicked off when my autistic son became mentally unwell a few years ago. Took ages for me to feel better and even now I still have a way to go. I wonder how many other special needs parents get this? Anyway, thanks for sharing and hope you continue to make progress. Deb

  2. people don't realise how draining looking after a special needs child can be. it has a massive impact on family and especially our health. I hope as the days pass Jane you will get stronger and stronger again to be able to deal with all the challenges of life.

  3. I am sorry that it has been a bad year for you personally. I am glad that you are now going to look after number one (that being you of course!!!). I think that most of us go through the process of helping and doing for others, volunteering etc. It is a learning curve and the eventual conclusion is that you and immediate family come first. Then you have the energy to give to friends and other family. May you have a fulfilling 2013.

  4. Although a couple of months later - thanks for your lovely comments. We moved just after I wrote this and I forgot to come back and respond.

    I think exhaustion, adrenal fatigue and general health problems are huge within the parents of special needs children. It's just not discussed because we all just get on with it.

    I have a better grip on what is going on now and am starting to heal but have a way to go. This is my year and at the end of it I hope to be a healthy and more energized me.