Monday 21 September 2015

Depression and Disability (CMT Awareness Month 2015 - DAY 21)

Welcome to day DAY 21 of International CMT Awareness Month.
Depression and Disability

Today I would like to write a little about the impact physical disability can have on mental well-being.

Living with any long term condition is difficult, I know I've certainly had my ups and downs. It can feel that other people get through daily life with more ease. It can seem that there are things you would like to do that you will never be able to. And dealing with other people's perceptions of you can make navigating through each day a chore.
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Disability can be incredibly lonely and the physical toll has at times been a huge burden on me.

I find the progressive nature of the disease hard sometimes. My CMT has gone through the usual stages from childhood tripping and poor handwriting to the ever increasing physical inadequacies of today. And of course, it doesn't stop there! Charcot-Marie-Tooth Disease continues to get worse throughout life.
Whilst time has given me the experience and tools to deal with many of these issues, others were much harder to overcome.
Each day is different and most days I never know how I'm going to be. Some days I wake up thoroughly exhausted and in pain before I've even got out of bed, and these days can be the most frustrating.
Disability can be extremely isolating, even though people usually do not intend to do anything to exclude you. For me, this manifests itself in the lack of invites to family skiing holidays, or to the many family outings that my very active family take part in.  Obviously I could not take part in these, but my family are naturally active, so these are inevitably the types of holidays and day trips they choose. I find myself feeling on the edge of my family at times but I have to remember that they love me and certainly don't intend to exclude me in any way!
My depression was not entirely caused by my disability. Bouts of depression could be triggered by my CMT, and it was also triggered by extreme stress. Other times, and perhaps the most frustrating, there seemed to be no logical reason for my slump in mood.  Which was the initial cause of my depression, I cannot say. Which came first? The chicken or the egg!  

Whatever the cause, depression can be so debilitating to the person experiencing it.  It took me to some very dark and scary places before I finally managed to start the uphill climb back to a more balanced state.
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Find what works for you!

At one point in my life, not many years ago, my confidence, feeling of self worth, and general state of mind were at rock bottom, with no sign of improving.  Whilst I've come a long way, I still often feel like the odd one out, out of place and uncomfortable in my own skin.  My body image and self-esteem was low and this has improved, although there's still much room for improvement yet.
It took alot of strength from within to accept the ever changing nature of my CMT and to learn that it does not define me!  Rather than hoping for things to change I started to adapt to my situation. Educating myself about CMT was a critical part of that, and CMT UK were on hand with all the info I needed. Knowledge truly is power!

Nowadays, CMT DOES form a large part of my identity, but for completely different reasons!  I have found great comfort, strength and camaraderie in the CMT community and armed with everything I have learned I am now in a position to be able to help others with CMT.
It can be difficult to live life with a chronic illness, and it is important to remember that fact and not beat yourself up if you have a bad day.  It is so important to build a strong network of support, from family, friends and others with the disease. Educate yourself and your loved ones. Learn about what you can do to makehelp yourself feel better.

For me that, has taken the form of medication (anti-depressants to rebalance the serotonin levels in my brain). I have also taken active measures to reduce the stress in my life and to also adapt the way I handle such situations. 

In the last six months I have delved into mindfulness and meditation as a way to organise and put aside busy thoughts in favour of concentrating on and enjoying the present moment. 

I don't profess to have found the magic answer.  However, despite the inevitable down days, I can firmly say that I am happy. Whilst there are still some things I could cope with better, I have achieved a good balance in my life, and for that I am thankful.
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Thankyou for sticking with me through this particularly long post.  To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!

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If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

1 comment:

  1. amazing. lovely. postitive. I follow fightback who shared your link. I'm setting a blog up after trying tapentadol for three months. I've had complex chronic pain for 21 years. I decided 28 years ago to be a positive thinker after a childhood of negativity and illness. not great with tech - but try this link if it doesn't work I've forgotten to publish!


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