Finding support in community – The Disability Blogger Award!

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I was absolutely delighted at being nominated for The Disability Blogger Award by fibromomblog thank you! This award created by Georgina at https://www.chronillicles.com . It is to give a deserving nod to those bloggers who write about their experiences of physical or mental ill-health. Blogs are often a great source of extra support or guidance to those who are going through similar struggles and also a great resource of information. I know I used to read a lot myself when I was first unwell and they can be a real lifeline for those who are generally housebound.

So, to the questions!

1. What has been an unexpected occurrence from starting your blog?

How much I enjoy writing! But I would also have to say the incredibly lovely feedback I’ve had from people from all over the world. It’s amazing to think that my little posts and the lessons I’ve learned along the way can actually help people. Another delicious highlight was getting featured on Tiny Buddha a fabulous website that I read when I was struggling with pain. It’s wonderful to feel like I can give something back to that community.

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2. Is there any advice you have for someone with a chronic illness that wants to start a blog?

Good question! Yes. Really think about why you want to do it and what you hope for your blog. Then, if it feeds your soul, go for it!

Personally speaking, I wanted both a creative outlet and a way to reach people going through similar struggles. I felt like I had something to say that might just be of some use. It’s an interesting perspective coming from an occupational therapy background to becoming a service user myself. I would also say that in my opinion quality counts more than quantity. There are a lot of blogs that churn out posts each week but they aren’t necessarily something I am going to choose to spend my time reading. Lastly don’t be afraid. If it helps just one person that is more than enough. In the words of Elie Wiesel – “You must tell your story. This is because, if even one person learns from it how to be more human, you will have made your memories into a blessing. We must turn our suffering into a bridge so that others might suffer less.”

3. What are some ways that you try to inspire others?

I try to inspire others through my love of nature. It gives us so much, especially to those of us who have physical or mental health needs and it asks for so little in return.

4. Do you have a flare or self-care kit? If so, what is in it? If not, why not?

I guess if I had a Mary Poppins bag for ill health in it you would find meditation, beautiful landscapes, photographs, literature, music and a lot of self-compassion. I’ve learned over the years that self-compassion for whatever I’m going through is a great healer. There would probably be some heat packs, hot baths, lavender oil, and chocolate in there too!

Nature and the Buddhist notion of impermanence which I’ve written about here are incredibly grounding and restorative for me. When I couldn’t get outside much I used some of the ideas here to bring the outdoors indoors

5. Is there something you do to take your mind off your illness?

Mindfulness and Netflix are very useful! As is the lovely community here on twitter. I love to watch hiking vlogs on youtube and hope to complete my own at some point.

That’s all folks! Let’s hear from some other bloggers that I would like to nominate and tip my hat to. These are :

health skills

touchingthesummit

survivinglifeshurdles

notjusttired

mycuppajo 

talmandan

Questions for the nominees

  1. What has been the greatest lesson you have taken from your illness experience?
  2. Who most inspires you  – past or present?
  3. Can you describe some of the tools you use to encourage your experience of well-being?
  4. Do you have any unhelpful habits you would like to change?
  5. Are there any authors you would recommend that could be beneficial to others on their own journeys to well-being?

Rules for the disability blogger award:

  • Thank your nominator
  • Recognize Georgina from Chronillicles as the creator of the award and include her link https://www.chronillicles.com
  • Use logo somewhere in the post
  • Answer your nominator’s questions
  • Write 5-15 of your own questions – they don’t have to be illness-related!
  • Nominate 5-15 other disability, chronic illness, mental illness or special needs bloggers Comment on each of your nominees’ latest posts to tell them they have

Continue reading “Finding support in community – The Disability Blogger Award!”

How to be with the suffering of loved ones

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Here is my piece as featured on
http://havingtime.com/

“We are not the survival of the fittest. We are the survival of the nurtured.”

– Louis Cozolino

I’ve written before about what helps me to find peace and equanimity with pain and chronic illness. But what happens when it’s not ourselves but our child who is ill or struggling with life? When it is they who suffer and cry out in pain?

My daughter is currently being assessed for Ehlers Danlos Syndrome, PoTS, and Hypermobility Spectrum Disorder. Her joints regularly subluxate, she often comes home from school limping and can struggle with the simplest of tasks. On top of this, she also experiences intense fatigue and chronic headaches. There is no cure for what she is being assessed for, though physiotherapy can and does help, and yet every single day she amazes me. Each morning she gets up, goes to school and works incredibly hard when I’m sure she would just rather stay in bed. She cares for her friends, for nature and still manages to have the energy to argue with me! Ah, teenagers….

When this illness was first mentioned however it absolutely gutted me. Perhaps it’s because I know how undeniably hard chronic pain is. There is no unsubscribe button. It’s invisible and can be tricky to downright exhausting to get the support you need. It is neither the future nor present I would have wished for her. But perhaps, like my experience of chronic illness, it will strengthen her and develop her in ways I can’t even imagine. One can only hope.

It’s ironic that to be in a family is to be constantly wounded; we love deeply and hurt deeply.  So when sadness does visit my door or fear makes itself at home I try and see it as a sign that I need to pause, breathe and reconnect with myself.

These feelings are perfectly normal, a part of life and there are a number of small practices that help me to stay balanced – from living in the moment and being out in nature to practicing gratitude. But I want to give you something practical –  a small offering that if I remember to do helps me navigate emotionally turbulent waters. The practice is a meditative exercise called RAIN. It has not only enabled me to meet my suffering with love but has helped transform it into self-compassion.

Rain is an acronym for:

Recognize what is happening

Allow the experience to be there, just as it is

Investigate with interest and care

Nurture with self-compassion

When you feel the heat of a powerful overwhelming emotion or situation take some slow deep breaths in through the nose and gently out through the mouth. Gradually let your breathing return to normal and begin the first step of rain.

The R is to simply recognise what is currently happening. Are you feeling the weight of worry? Is the squeeze of stress tight in your chest? Recognise any thoughts, feelings, and sensations that are present. When we are able to recognise that we are caught in suffering it enables us to hit the pause button and move forward from a wiser, friendlier position.

The A is to simply allow. Allow the thoughts, feelings, and sensations to be there, we don’t have to control them or suppress them. This can be tricky at first. As humans, we are so resistant to feeling any sense of discomfort. We withdraw, constrict and blame to try and make ourselves feel better but there is great freedom to be found in simply allowing, even just momentarily. So, for now, take deep, gentle breaths and say to yourself, “okay this is how it is right now”.

The I is for investigation – take a brief, kind and curious look internally. What stories might you be caught up in? Are you terrifying yourself with future scenarios that have not yet happened? What core beliefs underlie your feelings? That life should be different? That you aren’t going to cope? Most importantly how does this feel physically in your body when you are scaring or criticising yourself? Gently explore from your head to the tips of your toes and see where there might be tension, pain, heaviness or unease. What do those parts of you need? What would make them feel a little better?

This leads on beautifully to the N of rain which stands for nourish and non-identification. Tara Brach, a wonderful meditation teacher, and psychologist, has a lovely practice I regularly use. She suggests putting your hand lightly and tenderly on your heart (interestingly this has been shown to soothe and calm the amygdala). Turn towards yourself lovingly and as Tara suggests sense the possibility of offering yourself what is most needed. Perhaps some caring words such as, “it’s ok I know this is hard, I care about you, I love you”. Maybe you could imagine a loving relative from your past soothing you or perhaps you could picture a beloved pet offering you affection.

 

How does that feel? Many struggle at first with offering themselves love and tenderness, I know I did. Perhaps it feels a bit silly or maybe you don’t believe you deserve love but I can’t think of a kinder thing to do for ourselves and others than be genuinely and lovingly present with our suffering.

When I was able to do this practice I stopped identifying as someone who was suffering alone. I was able to connect compassionately with the millions of other parents around the world whose children may also be unwell and in pain. I could let go just enough to stop identifying with worry and rest in the awareness that I was caught in a spiral of fear. Fear that I could observe.  It gave me some much needed breathing space. Most importantly I was then able to be truly present for my daughter. I could authentically offer her my peace, my smile, my time and my hugs.

 

So what do you do when you hear your child may have a chronic illness? When you make peace with your own persistent pain but are left in a heap on the floor heart unraveling? You find peace when peace is scarce, you love, you hope, you cry and you pray, you put the kettle on and maybe pick up some litter. You just keep breathing.

Claire Marsden @occulife

I’m a qualified occupational therapist with a passion for nature, mindfulness, and well-being. I have a painful chronic illness that I’m learning to navigate life with, my second after recovering from a previous illness three years ago. I guess I’m a bit of an expert at living life with ill-health! I hope my thoughts will be of some use to people on their own journeys to well-being.