Living with Blepharospasm. Validating your Sense of Purpose.

Adapting to a long- term health condition, is not an easy road to be on. There are many phases we go through during our journey from denial to acceptance. It is not just the physical symptoms we are coping with when we are feeling tired and achy from the constant pain that seems so relentlessly unforgiving. We can be strong, thinking this will never define us, but sometimes no matter how strong we are, we come to a realisation that we are not the same as we used to be and we cannot do the same things we once could. In time we all change. We all get older, put weight on, get wrinkles and grey hair, but when your world is turned upside down by a chronic health condition, it can have a devastating effect on your life.

You can so easily lose sight of who you are, especially if you have lost your identity from disfigurement, serious injury, or chronic illness. Even if you have to leave work or give up driving, it can have life changing consequences. You might have to sell your home or move from an area you are familiar with. In some cases, people are having to rebuild their entire lives without any financial support and life can pull you down to the point where every day is a struggle to get back on your feet.

It feels as though everything is spiraling out of control and you begin to have those awful thoughts and feelings of why me? When I feel like this, I try and change my thoughts to What can I do about this?

When I left my job, it was for all the right reasons. I couldn’t meet the demands of the role anymore because I couldn’t see properly due to Benign Essential Blepharospasm as well as osteoarthritis in my left knee. I thought to myself “now what am I going to do?” I had worked in a school for the past eight years. I have reached the point where I am thinking about my sense of purpose. I have to move forward as I am now, with my eyes closing all the time and my gammy knee giving way when I walk. It is about learning to adapt in order to move on.
During this process, I am reframing my mind by doing things differently.

Having just had my last lot of Botox injections to paralyse the muscles around my eyes, my eyes are feeling a bit uncomfortable and my vision is blurry, so I have decided to use my manual braille writer to type this today. I’ve been learning to read and write braille to enable me to write whenever I want to. I will then speak this back to my computer using speech to text. This does not require me to use my eyes at all and they can have a good rest whilst I carry on. There will always be obstacles in our way but we must find our own solutions as we try to re-establish ourselves in a bid to move on with life. Otherwise we simply stay stuck and that means feeling confused, low, and frustrated. It is easy to become trapped in a pattern of negative thoughts such as; “ If only, or I can’t because….”. Sometimes we even sabotage ourselves without knowing it, turning down opportunities because we have stopped believing who we are.

We don’t give ourselves enough credit for the things we can do. We just see ourselves as incapable or view tasks as beyond our abilities because of the things we know we can’t do anymore instead of embracing a new version of ourselves, trying new ideas and discovering new interests. We feel lethargic and with that comes an overwhelming sense of fatigue that seems to take away our enthusiasm for anything. On bad days, I just acknowledge it now. Today is a bad day. I might go and get some fresh air in my lungs or I might sit or lie down until the feeling passes but as soon as I feel brighter, I’m thinking about what I will do next that will move me forward. What can I do now that will make a difference to my life tomorrow? What help or support do I need? Who could I talk to? People don’t always come to us; we have to be the ones to seek out the support we need.

Validating your sense of purpose is about acknowledging that you have changed and deciding to do something about it. I don’t claim to be an expert on the psychological side of this; I am just giving you a perspective from my own experience. I am on this journey with you, going through the same challenges and trying to get my head around everything and I am learning a lot from the experience as I am beginning to establish myself. Change takes time. I have been looking at all the jobs I have done in the past, in order to find some clues as to who I want to be in the future. The next step will be how to get to where I want to be. When I was rethinking my new direction, I thought about what my motivators were to begin with.

Don’t be put off by all those negative thoughts we all have that stops us from making progress in life. They will always be there but we can learn to reframe them by overcoming obstacles. Getting opinions from friends can sometimes be useful, or finding a life coach, but it all starts with ourselves developing a sense of purpose by finding something meaningful to us. For me this has been braille. I have enjoyed learning it and I’m using it to help me move on even though the bigger picture eludes me, I know there is a future out there for me somewhere. At least I hope so!

About the Author: Claire Rider was diagnosed with benign essential blepharospasm in 2015 and had give up driving and her job because she couldn’t do the tasks she used to be able to do. She can look down and use screen readers and speech to text to help her write. She spends short periods of time on the computer because it seems  to trigger her eye spasms. She is looking to work again and would love a job where she can help others. She used to work as a Special Needs Teaching Assistant.

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