Isolation of chronic illness
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Isolation is what I felt last week. I was writing in my journal after finishing my meditation and a wave of sadness enveloped me. I wrote it down. ISOLATION. Since that day I have been thinking about this. Wondering why I felt that way. What causes this, and what can I do?

Sometimes in everyone’s life we need to step back. To withdraw from the storm of life, whether you are sick, or well. The time to think about your life, where you have come from, where you are, and where do you think you will be. It is the best way to reflect on life. But there are times when isolation is thrust upon you and having a chronic illness can make you feel as if you are in a bubble floating above the activity of ‘normal’ life.
Is it true the pain and multiple sclerosis has isolated me from the world? In my darker moments I feel this way. But after some reflection I have realised that the isolation is because of two factors, external, and internal.

External


Many people do not know how to interact with people with disabilities, chronic illness, invisible illness and mental illness. There are many blogs that discuss this, and I have been fortunate not to experience too much insensitivity because of my illness.
With the work, I have also been fortunate in my past, but now I am finding it very difficult, if not impossible, to find a job that can cater to my specific requirements. By being excluded from work, because of my disabilities, I have lost one of the main ways of incorporating myself into the community where I live. This loss is deep, and I am striving to find something that can replace the purpose that this gives.

Internal

I also realised that I am isolating myself from the world. Sometimes unconsciously, and at other times very deliberately. Sounds cause me problems, and especially if there is over one person talking. Concentrating is the only way I can understand a conversation, and this exacerbates my already bad headache. This is why I avoid busy places, such as restaurants, bars, shops. Artificial light is also a problem and the special glasses I bought help a little, but don’t resolve the problem. So again I avoid these places.

Avoiding the question “How are you?” is also a reason to stay away from people. I want to say how I feel, but the question really is a greeting. So I say “I’m fine”. There are times I say how I feel, and it hurts me to say it. Once the words are in the world it makes the pain, and loss, more real. I really don’t want to expose myself to an extra level of discomfort.

It isn’t all bad

I have learned that I need to have social contact. To engage with the world. I achieve this through the magic of the Internet. Doing podcasts (such as the DizzyCast series) and engaging with the blogger community. By using the web I can control who I engage with, and when and how. More control means I don’t face unexpected pain or emotional turmoil.
Community gives strength, and this community is large, and all over the world. Plus, and it is a big plus, they understand. They also have the same problems, and this gives me solace.

So, I am isolated from the world, and this is partly my fault, and also caused by my illness. But I can break through this by leaning on the community I am part of. I hope that readers of this blog also have found a community they can interact with. There are many Facebook Groups (such as MSPals) that offer support, a compassionate ear, and a place to feel safe.

Recipe

Zucchini and carrot bread
Zucchini and carrot bread

Ingredients

  • 7 large eggs
  • 1 cup grated vegetables (eg one zucchini and two carrots)
  • 1/2 cup – clarified butter (or ordinary butter or olive oil )
  • 1/3 cup – coconut flour
  • 1/3 cup – linen flour 
  • 1/4 cup – pumpkin seeds 
  • 1 tbsp. apple cider vinegar
  • 1 tsp. baking soda
  • 1 tsp. salt
  • spices (basil, dried onion, etc) – optional

Directions

  • Grate the vegetables on a fine grater, you need to get a full cup, well filled – press the vegetables in it and try to drain the juice well. Usually, one zucchini and two medium carrots will fill the glass. 
  • In a bowl, mix all the wet ingredients with a mixer (except vegetables), and try to get a loose, airy texture.
  • Add all dry ingredients and mix with a spoon.
  • Mix in the grated vegetables, half the pumpkin seeds and mix well.
  • Pour into a standard bread mould, decorate with the remaining seeds.
  • Bake at 180 ° for 50-60 minutes (check with a toothpick).
  • Finished!

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