It’s Never As Easy As…

How many times have you said, “No worries, that’s as easy as…….”

I know I’ve said it countless times during my life. In fact its how I used to live my life. Everything was seemingly easy and if it wasn’t, I could quickly convince myself it was.

I had a positive can do, absolutely, yes to everything, kind of attitude to life.

I still have this attitude but my chronically ill, crumbling and disabled body, really does struggle to get with the agenda.

A Gradual Awakening

I feel blessed my change in life circumstances have gradually evolved. Many are faced with a drastic and life altering diagnosis in the blink of an eye. A serious accident or a terminal illness can so quickly turn life on its head, causing shock and grief to be overwhelming.

My gradual awakening, while a blessing, has not been without its challenges. I suffer from extreme fatigue, due to my bone disease pain and autoimmune diseases, but in general my brain manages to stay alert and functioning. At least I’m telling myself that at this stage!

The downfall of an active and alert brain, is the messages it gives you also tend to lean on the side of abled and active.

My brain still has a lifelong program installed, playing on a loop the same message, “you can do that, it’s as easy as……”.

Point In Case

Now I’m not completely stupid. I do know my disabilities limit me severely. My regular readers will know I have made monumentous changes to the way I live my life.

There are times though when I completely get it wrong, assessing the impact seemingly easy tasks will have on my body.

Let me give you an example.

I like to have an overnight bag packed in case of an emergency hospital admission. I’m not being a drama queen, I’m being a realist. I’ve been taken by ambulance to hospital more times than I can count on my fingers over the past 8 years. Being prepared with my stoma supplies, medications and some clothing, makes everything so much easier.

So, I thought checking and refreshing my overnight bag would take 30 mins maximum. “It will be as easy as”, I confidently said to myself.

Ha…..how wrong could I be?

So here’s how this little exercise went:

• Got hospital day/overnight bag out of cupboard.
• Another bag fell on my foot…..oops a new stress fracture!
• Finally opened the bag (after trying to stand on my legs) to find that it was full of things I didn’t need.
• Emptied bag and gave surplus to requirement items to my husband. (He had come to my rescue following the foot crisis.)
• Realised some of the things I thought were in the bag were not.
• Gathered required items, using my walker to mobilise around the house, while placing the items on the walker seat to transport them back to the bedroom where the bag was waiting.
• Packed my spare pills ( you really don’t want to know or ask about that saga!)
• Realised I needed a few items from the shop and some prescriptions required refilling.
• Husband headed out to chemist, leaving me with firm instructions to sit and rest.
• I actually listened to his advice as I was in agony and I waited!
• Husband came home and I finished packing the remaining “normal” items.
• I say normal as next I needed to work out what I wanted to take in terms of my stoma supplies.
• I decided to pack each stoma change in a zip lock bag. This system works incredibly well when I’m trying to deal with bag changes and broken legs/feet/spine. It does take time to pull together but worth the extra effort.
• Husband decided to tell me I perhaps should pack a little more in case they kept me in a couple of nights. I didn’t really need that thought but unfortunately with my medical history, experience tells us its a real possibility.
• Extra packing gets underway.
• The whole process was spread over 4 hours!!
• Later that night, we were lying in bed just about to go to sleep, when I remembered I forgot to pack a spare set of underwear!
• Hubby got out of bed to put the items on top of the dresser so I’d see them in the morning. At this point we decided we’d completely had enough of this overnight bag shenanigans.

Thankfully I had the luxury of a few days to recover!

The Moral Of The Story

There is a moral to this story. It can probably be best summed up as:

With chronic illness, it is never “as easy as!”

So many clichés spring to mind but I promise I will spare you those.

Basically we need to allow plenty of time to prepare for any extra tasks. Even an event we are planning, be that a holiday, surgery, a day visit to family or friends, a birthday etc, all need to be carefully executed and paced.

We can’t just think all will be ok on the day. We can’t just assume a task will take us 30 minutes like it did when we were healthy.

If we do we will set ourselves up for failure. Stress, anxiety, extra pain and fatigue and likely to occur, with the outcome we may not be able to finish the task we need to complete.

My rule of thumb is, where possible, always allow 2 days minimum to recover from completing a complex task. I also need a weeks notice before committing to seeing friends or getting out of the house. What I do in the days leading up to such events will make the difference between it happening or being cancelled.

We can’t guarantee how our bodies will react to tasks we don’t do daily as, let’s face it, chronic illness doesn’t like to play fair.

By being well prepared, pacing, getting help and listening to our bodies, not just our brains, we can at least guarantee we will feel better, knowing whatever the outcome, we didn’t unnecessarily sabotage ourselves.

“It’s never as easy as, but it’s not impossible with the right mindset and a lot of preparation”

Take care

Sam xx

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