Dancing To The Beat of My Own Drum..Chronic Illness Style!

I don’t generally suffer from anxiety. It doesn’t mean I don’t get stressed. Of course I do. We all do.

My overall health situation can cause significant stress, on occasions, but I accept it is what it is, and I’m continually finding ways to adjust my life to accomodate it.

Pain, when it’s at unrelenting levels day after day, causes great physical stress. Left unmanaged it can easily lead to mental stress.

I don’t usually show I’m in pain to other people. I can still talk and laugh through it and function mentally.

My husband really is the only one who sees the reality of the depth of the agonising pain I experience. It’s hard to hide it 24/7, especially when pain killers wear off!!

Early morning is one of the worst times of the day for me pain wise. Writing this blog post is helping to distract me from the constant pain of my unstable, broken lumbar spine, along with the regular daily pain my bone disease lavishes on me by way of multiple fractures, both chronic and acute.

So while I may not appear mentally stressed, most of the time I’m very aware I am physically stressed. I feel I’m working full time not to let it mentally cripple me.

Pain Needs To Be My Friend

Whenever I’m in hospital the medical staff don’t take much notice of my outward demeanour in relation to pain. I’ll say it’s 6/10. They’ll take my blood pressure and say, “Sorry Sam, we think it’s more like 9/10.”

Once my pain medication kicks in, my blood pressure drops. Pretty easy deduction, physical pain causes a physical stress reaction.

My pain isn’t going to improve. If anything it will get worse, although I’m not sure how it possibly could given my current pain levels!

Anyway, whatever happens, there are very few options available to me now. Surgery is off the agenda as my surgical team can no longer work with my bones, due to their questionable integrity. They are so concerned complications are not just a possible risk anymore, they would almost certainly happen. They believe spinal Surgery will cause me to become permanently paralysed….or worse.

Pain needs to become my friend so I can live as well as possible with it. A strange concept I know. How can pain be your friend?

I guess it starts with how I think about my pain. My pain reminds me if I have surgery the risks are imminent. My pain tells me I’m alive and not yet paralysed.

My pain reminds me I have a progressive disease and I need to look after myself. It reminds me when my rest periods are due.

My pain causes me to re-evaluate my life goals, vision and purpose. As a result I’ve created a new life, full of things I love to do, different things I would never have considered in my previous able-bodied life.

Pain medication helps me but only to a certain degree. I need other pain management tools to help reduce the stress of pain.

Pain has caused me to be inventive, it’s challenged me mentally to think outside the box. I’m a “problem solver” by nature, so I have embraced the challenge of pain management as a project. I’ve approached it from a change management perspective, which means I’m the strategic designer and therefore I’m in control of it.

Dancing To The Beat Of My Chronic Illness Drum

Pain causes me to dance to the beat of my own chronic illness drum. It’s letting me set guidelines specific for my life, for my physical needs.

It’s also allowing me to share my story, in the hope some of my life changes may inspire others to find ways to dance to the beat of their own chronic illness drum.

Will pain be my best friend? Of course not but it doesn’t have to be my enemy, and this is what I mean by accepting pain as my friend. I don’t want to make it worse than it is. If I stop looking at it as an enemy, it reduces its power over me. It disarms it!

I have a few tips, I’ve shared in a number of previous blog posts, to deal with the most difficult pain cycle episodes. These episodes will always happen when least expected, so strategies to cope with the extreme events are part of my pain management toolbox. My Chronic Illness Catastrophe Days post, might be one of the most helpful, particularly in terms of dealing with these periods of excessive pain and disease flares.

Music Soothes My Soul

My favourite and most effective “natural” pain management tool is listening to music.

When I wake in the morning I literally can’t move. As I try and roll over in bed to get out, I soon realise my body is fused to the mattress. My spine just won’t move and if I try, the pain often releases a blood curdling scream from my lips.

On these mornings my husband wakes with a start at the sound of my distress cry and he knows the drill. I have to get out inch by inch, any quick movement is bone grating on bone. As I slowly sit on the edge of the bed my spinal canal is compressed and more screams follow. I eventually stand, with the help of my walker and a different kind of pain sets in. My legs begin to scream and I begin to shake all over. Perseverence and pacing eventually get me mobile…well sort of mobile!

I’ve found over the past year if I want to complete a physical task around the home, like doing some light housework, I need to implement some kind of pain management distraction therapy. I also have learned my pain dictates the timetable.

I am usually rendered useless for four to six hours of any day in terms of physical activity. It’s not the end of the world though. I can work around this and still have a life. I use my non mobile time to write, Podcast, manage my online support group and connect with members on the forum.

During my semi mobile hours, this is where music works for me. This is where I can begin dancing, not in a literal sense of course, to the beat of my own drum.

As soon as I play my favourite songs I begin singing. My mind becomes focused on the music and the words of the song.

I listen to music special to me. Mostly it’s a variety of gospel or contemporary music andbI also love country music.

I still feel my pain. Each step causes sharp shocks throughout my body, but it’s not at the forefront of my thoughts. The small change of allowing the music to flood my mind, allows me to complete the task I want to do. The music soothes my soul and reduces physical and mental stress, which in turn helps reduce my sense of pain.

Music Is My Reward

Over the past few months I’ve taken my music distraction therapy a step further. I’ve created a discipline where I don’t listen to music unless I’m completing a physical task, which includes getting dressed and doing my hair and makeup.

This approach to using music as a pain management tool, means I now look forward to doing some physical tasks each day, rather than cowering at the thought of them. They are now linked to a reward. A reward special to me and this is key to why it works.

Any reward must be aligned to your own tastes, loves and likes, so it won’t be music for everyone. I hope it gives you an idea though of what you might be able to implement, to dance to the beat of your own chronic illness drum.

So, for me physical tasks = my music sessions, listening to my favourite songs. They ignite a happy positive image in my mind rather than a crippling painful one.

Now my idea of what’s an important physical task will likely be very different to yours. For me it’s important to get dressed nicely each day, make the bed, keep the house tidy etc. I don’t want to feel like a patient or like I’m unwell, so doing these things help me still hold on to some semblance of normal. It’s important for my mental wellbeing.

Not to do these tasks would cause me mental stress which would only aggravate my physical pain further. You need to identity your own mental stress triggers in order to create your unique plan to dance to beat of your own drum.

It’s important to identify for you, what are the tasks in life worth attempting to achieve, and which tasks would serve no purpose in terms of improving your well-being and pain levels.

A Sensible Approach

I still have intense limitations even while happily listening to music. I pace all my activities and I can’t be standing or upright for more than 10mins at a time. I have severe pain during those 10mins but it won’t cause me to be laid up for days if I adhere to my 10min limit.

If I try and push through my pain threshold, I generally end up with new fractures…..yes I have learned the hard way. Yes, I have been a slow learner.

So, if you want to try some music distraction therapy to do a task, here’s my tips but please be careful;

1. Think through how to go about the task in a way you won’t aggravate your pain beyond what you can handle;
2. Set a time limit. Start slow and build up to longer tasks as you test your bodies limitations;
3. Set a playlist on Spotify or however you listen to music. Make sure it is only going to play for the length of time you need to be active. It’s a great timing system – music stops, you stop;
4. Enjoy yourself. Pain takes so much from us. To have 5, 10 or 30mins of physical movement listening to music you love while achieving a task, is just pure joy for me;
5. Be careful with upbeat music. I actually had some great toe tapping music on the other day and I started to dance a little. I know, I know….completely crazy and there were major consequences. So my advice is uplifting music is great but not anything that makes you think you can fly.

I’ll Leave You With A Favourite

Whispering Hope is an inspirational song, with a beautiful melody and absolutely perfect words for anyone experiencing pain and suffering.

We can hold onto tangible hope. We can dance to our own chronic illness drum in a tangible way. We can alter our circumstances to some degree with a little imagination and thought.

“Whispering Hope, oh how welcome your voice”

It’s a bit of a tear jerker but sometimes a good cry also helps relieve physical pain a little.

The words below are the first verse and chorus. The You Tube clip is Hayley Westenra, a beautiful New Zealand singer with the voice of an angel.

I hope you enjoy a bit of music to soothe your soul. Use it as an opportunity to quieten your mind so you can begin to think.

How can your pain become a friend, rather than an enemy?

What would your “dance to the beat of your chronic illness drum” look like?

Whispering Hope

Soft as the voice of an angel,
Breathing a lesson unheard,
Hope with a gentle persuasion
Whispers her comforting word:
Wait till the darkness is over,
Wait till the tempest is done,
Hope for the sunshine tomorrow,
After the shower is gone.

Refrain:
Whispering hope, oh, how welcome thy voice,
Making my heart in its sorrow rejoice.

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.

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My book “My Medical Musings”, is published by Imaginewe Publishers and available now to purchase as a paperback or e-book.

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