February is the Month of Love….and Love Can Take Many Forms

You would be forgiven for thinking this is a Valentine’s Day post given the title I’ve chosen. It is about love but with a twist.

This blog post is about loving life again when chronic illness takes away things we have always loved but can no longer do.

It’s about love and losses.

It’s my musings about acceptance being the gateway to a new life.

Acceptance is not a sad resignation, it’s the pathway to peace, happiness and freedom from prolonged grief.
Sam Moss

For me, acceptance is acknowledging my disabling rare disease “is what it is”. It’s part of me, but it’s not all of me.

I have formed strategies over the past ten years to adjust to my change in circumstances and to live a contented life. I’ve discovered new loves along the way, and I’ve shared many of these throughout my blog and on my podcast, Medical Musings With Sam. You can also read more about my loves in My Story.

In this post I want to talk about “Loves and Losses” in the context of acceptance.

I love my life, I am happy and I have a general positive disposition no matter what life throws at me.

It doesn’t mean I don’t miss things I have always loved but can no longer do.

It doesn’t mean I haven’t made enormous sacrifices to find ways to live with my disease.

It doesn’t mean there are not days when I feel the loss of my loves deeply.

5 G’s Of Change

I have a particular grief model I liked to use when I worked as a Management Consultant. It’s a little less clinical I think than some models.

It’s called the “5 G’s of Change”:

Griping – this stage is when you feel like you just can’t do this. It’s all too much. You just want to give up and you are in a state of shock.

Groaning– this stage is the complaining stage. The shock begins to wane but all you can feel is deep sorrow and even fear as you contemplate your situation.

Groping – this stage is when you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer. You are wanting to find solutions and are prepared to take baby steps to do so.

Grasping – You begin to understand what the new situation means. A new norm is emerging. It doesn’t mean you’re ready to embrace it yet. You may find for a while you still return to the Groaning and Groping stages

Growing – You embrace the new, find ways to live again and acceptance brings peace. You remember the old life and the losses with much less pain now. The memories of the good times may even feel welcome and strangely comforting.

When we lose a loved one we go through every stage of grief. Some stages we may get stuck in for a while. Some stages we may move through quicker than others.

Eventually, most people are able to accept their loved one has passed. They begin to learn to live again.

A part of us will never be the same because of the loss of the one we loved, but as time goes by the memories don’t hurt as much. Those memories may even bring joy and comfort.

We will always miss our loved one.

It’s the same with any major life loss, including the loss of good health. It takes time to work through the stages of grief. We may get stuck in some stages but eventually we’ll grasp our new reality.

We will learn to live again. We’ll never be the same but we will, at some point, accept and embrace a new way of living. We’ll create new norms.

We’ll definitely miss aspects of our old life and some things we once loved but can no longer do, become lifelong losses. This is why acceptance is so important if we still want to live a fulfilled life.

My Loves and Losses

Here are a few of my losses and how I’ve replaced them with new loves.6

I loved to go on long walks with my husband along the beach, in parks or in the bush. I can’t walk now without crutches or a walker and for distances more than 200 metres I need a wheelchair/scooter. Most days I don’t have the physical strength, due to pain from broken bones, to leave my home. (My New Love…watching travel shows, following You Tube Vloggers restoring French Chateaus, going for parkland picnics with my husband)

I loved to go to Church. I now can’t sit for the length of a service due to my broken legs, spinal stenosis and widespread bone pain. My stoma is so unpredictable I need access to disabled toilets, which unfortunately not all churches have. (My New Love… Sunday morning services on You Tube)

I loved to go to work. My work wasn’t a job, it was a passion. Leading people was a joy. I was living my dream. I had my dream job. Weekends were nice but Monday to Friday were what I looked forward to. Sad maybe but true. (My New Love…My online support forum, my blog, my writing, my Podcast, my online volunteer work for Arthritis Queensland……I really have a new full-time job!!)

I loved to jump out of bed every morning bright and early. Mornings were always the best part of my day. I woke with enthusiasm and passion for what the day held. I still do to some degree….until I try to move my body and the realisation sets in that I am not the girl I used to be. Mornings now bring a whole new meaning to “a daily wakeup call”. I am faced with my new reality of chronic illness the moment I open my eyes. (My New Love… Taking my time in the morning but also enjoying watching the sunrise while lying on my bed or sitting in my favourite chair sipping a cup of tea.)

I loved long road trips. My husband and I have a whole cupboard full of photo albums cataloguing our road trips across Australia. Such beautiful memories are also a stark reminder of what I have lost. Looking at them is definitely bitter sweet. (My New Love… Having moved to a semi rural country area, I now enjoy gorgeous country drives on our doorstep)

Being Independent. I’ve never been one to crave independence, even when I was healthy, but once you no longer have the ability to jump in a car and drive to the local shops or go to a hairdresser appointment etc on your own, independence is suddenly a loss. I am 100% reliant on my husband, or a carer to be with me outside of the home and to help me with most things in the home. (My New Loves… Online shopping, mobile hairdresser, at home care, medical phone consultations)

I loved to go to restaurants. Those days are gone. I can manage 20 mins in a local cafe on a rare good day but any longer and my pain levels are unbearable. (My New Love…Morning Tea or Lunch on our back patio with pretty china and yummy food, whenever we like and with our choice of music in the background)

I loved being spontaneous. My husband and I always enjoyed just deciding on a whim to head out on an adventure or go on holiday on short notice. We had freedom to accept job opportunities all over the country. We have moved locations and homes over 20 times in our 28 years of marriage. Those days are well and truly gone. The most spontaneous thing I do now is buy something online as a treat, which leads me to… (My New Love… Slowing down and feeling settled)

I loved going shopping. My favourite pastime, when I wasn’t at work, was strolling through our local Westfield Shopping Centre with my husband. We would window shop for hours hand in hand. We’d stop for a coffee and a snack and head off again, enjoying every minute. (My New Love… Online shopping and comfortable feet!!)

My losses are my husband’s losses too. He misses all the things we did together. He’s also had to travel his own journey towards acceptance.

We must never forget how our chronic illness affects those who love us.

They will have their own unique reactions, as they work through the 5 Gs of Change, and we need to give them time to come to terms with this new life.

Discovering New Loves

So a life of acceptance will be a life that encompasses loves and losses. New loves will be discovered. My old loves are still very much a part of me. They are part of my DNA so to forget them or be fearful of remembering them, won’t help me accept I am now living and writing a new chapter of my life.

I accept my losses and acknowledge I miss them. It’s ok to miss things we loved.

“Blessed are those who mourn, for they will be comforted.”
Matthew 5 v4

My response to accepting the chronic illness changes in my life, is to constantly find ways to fill the void of my losses with new loves.

If you are having a day, or season, when you are feeling deeply the loss of the things you loved to do, take time out to think about how you can create a new love. Something to help fill the void.

You might just be surprised at how creative you can be with your ideas once you start brainstorming. Enlisting the help of close friends or online support group friends may get you started with a “new loves” list.

Whatever grief stage you are at, in your life changing event, don’t be afraid to contemplate your loves and losses. Feel the pain, hope for the future.

It’s a healthy response to change.

It’s all part of journeying towards the acceptance process! It’s all part of creating a very different, new life full of new loves.

Take care

Sam xx

“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.”
Revelation 21 v 4

Thank you Sweetheart

For a Valentines Day Love Story…..Here is My Love Letter to My Husband

Medical Musings with Friends

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.