My Burst Bubble Of Contentment

I thought I was pacing at a level which couldn’t possibly get any slower.

My last blog post gave you a Peek Through My Window Of Pain. It details how slowly I need to move, how limited my physical functionality is.

Despite my limitations, I have been comfortable with my daily routine, with my ability to potter around the home, enjoy the odd country car drive with my husband and, despite my high levels of chronic pain, push through to some degree.

My Burst Bubble

A week ago I was going about my normal daily routine. Pacing as I should and happy with my circumstances. I felt I was able to achieve a lot given my situation. I had worked hard to lower my expectations of myself physically, so I was content I was doing really well all things considered.

Within a second my circumstances changed!

I literally did nothing more than turn from left to right, crutch in hand, and I was frozen.

My left leg, left side lower back and my left foot would not move. The slightest movement sent soaring pain through the entire leg, hip and lumbar spine.

My happy bubble of contentment was being threatened. It was about to burst in a big way, both physically and emotionally.

My husband supported my left side, while I gripped for dear life my right crutch, and we made our way slowly to the bedroom to try and get me on the bed. Thankfully I was only about 10 steps from the bedroom when this crisis hit.

It soon became obvious, over the coming days, my bone disease was deciding to play havoc and progress the damage to my already severely crippled spine.

Is It Possible To Pace The Pacing?

When we live with chronic illness we can live a fairly “stable” life. However if our chronic illness has no treatment and is likely progressive, we can pretty much guarantee any kind of stability we have at the moment won’t last.

My husband and I have short and long term contingency plans for the progression of my disease. However each time we have a progressive event, it still causes us to grieve, to re-assess, to feel fear and concern and we need time to make necessary adjustments to life.

The new pain levels are exhausting enough, but the emotional toll and strategic planning required to make physical adjustments, add to the pain and require time and space to comprehend what it all means practically.

I’m a problem solver, so it doesn’t take me too long to begin assessing the situation. I like to promptly work out strategies to manage my change in circumstances.

This time I was so consumed with pain it took me 5 days before I realised pushing through was not possible. Trying to push was just distressing me. Even the thought of moving was beginning to make me feel nauseated, as I knew it would induce a pain beyond my ability to cope.

Something needed to change. I needed to change my thinking and my approach to daily life.

I needed to give myself permission to change.

I needed to pace my pacing

My Bubble Restored

My body was giving me clear messages. I literally couldn’t, and still can’t, stand upright for more than 5 to 10mins without extreme lower back pain and sciatic pain running from my hip to toes. The pain is like someone clamping me down on a torture bed and twisting and turning it constantly. I don’t know how else to describe it. My body screams and won’t move. I have no choice but to sit down immediately.

I wanted to restore my bubble of contentment and the only way I could achieve this was to find a “new norm”, a new level of pacing.

First things first, I needed to sightly tweak my medication so I could think clearly without mind blowing pain. It’s not ideal but I had no choice but to increase my Prednisone a little for a few days. I’m cautious when doing this as I’ve been tapering down, so I only increased it by 5mg and only for 5 days. It was enough to help me think about how to adjust my life.

I soon realised the level of pacing I’d grown accustomed too wasn’t adequate anymore.

I needed to pace my pacing asap.

I didn’t want to. I felt like I was giving into my disease at first. I felt like I was failing.

I listed the activities causing me the most grief:

• Getting dressed
• Doing my hair /using a wig
• Putting on makeup
• Having an evening shower
• Basic housework (dusting/loading dishwasher/making the bed)
• Making breakfast/ lunch (husband already does dinner)
• Cleaning up after dinner

There were a few more issues to do with my stoma/personal care but I’ll spare you the details of those.

Basically my list above could be done but not the way I’d been doing it. I needed to make practical changes and I have.

Keeping in mind I literally can’t stand for more than 10mins at a time, my new approach to life has significant limitations. I need to be prepared to accept this as an ongoing change, on an emotional level, if I have any chance of restoring my contentment bubble.

I’m hoping my current standing limitation may improve over time, if this disease crisis settles.

Sometimes damaged bones can fuse naturally and the pain subsudes a little. It’s this hope we hold onto, given I can’t have the much needed fusion surgery to stabilise my spine. The high risk of life threatening complications, is not something my Surgeons or I are willing to take at this stage.

So my approach to pacing the pacing means I needed to think outside the box:

• Getting dressed – Organise my clothes the night before. Enlist the help of my husband. Wear quick to put on, easy and comfortable style clothing. Don’t worry about the time of day. Just to get dressed is a wonderful achievement.
• Doing my hair /using a wig – simply put a pre tied bandana on my head.
• Putting on makeup – sit on the ensuite toilet seat and use a shaving mirror attached to the wall to see what I’m doing.
• Having an evening shower – only shower after dinner once I’ve been resting, not straight after loading the dishwasher, and if I can’t shower, simply use hospital wet wipes. Use shower seats and after drying off, sit in an armchair for 10mins before brushing teeth, dealing with stoma etc
• Basic housework (dusting/loading dishwasher/making the  bed) – don’t stress the small stuff. Do a task for 5 mins, sit for 10mins…repeat.
• Making breakfast/ lunch (husband already does dinner) – if I can’t do it, allow my willing husband to do it without feeling guilty. Mostly keep things simple and don’t push. Sit down as required to do tasks, using my walker seat in the kitchen
• Cleaning up after dinner..allow time for evening pain meds to kick in before attempting this task. Stand for 5 mins, sit for 5mins, repeat until task finished

Now I know you may be reading this and saying, “Sam, just get help from a carer”.

Yes, I could absolutely get carers in daily but I want to still do things. I enjoy these household tasks and it’s still really important for my overall health to move my body to some degree.

My husband and I also don’t want the intrusion of strangers into our home life at this stage. We want flexibility and freedom for as long as possible.

I’m still reviewing how best to manage the new “pacing the pacing” plan, but I do feel my bubble of contentment has returned with a new strategy forming.

Final Takeaway

If you feel your drowning in your disease at the moment, review all you’re trying to do.

• What are you struggling with?
• What could you do differently?
• How can you do it differently?
• Do you need to be doing a particular task?
• What makes you feel content?

With a change to your current pacing plan, you may find life feels more settled and manageable. You might find your pain or disease symptoms settle a little.

We’d all like to think our chronic illness won’t worsen, but the reality is we will likely have flares or disease progression.

Being ready to accept the reality of our situation can help ensure our bubble of contentment won’t burst, but will be sustainable long term.

Take care

Sam xx

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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Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!