Thursday, 13 April 2017

Choosing Your Battles - 3 Ways To Cope When Living With A Chronic Illness

Disclaimer: I don't mean this post to be taken as health advise. Please speak to your Doctor or Health Professional if you have any problems.  I just wanted to share some of the ways I've found to cope over my nearly 20 years or so of living with a chronic illness.

Hi Honeys
How are you today?  Very well I hope dear ones.  I've been a bit on the quiet side recently haven't I? For months actually.  I am sorry, I have so many posts, started and abandoned, sitting in the draft folder but arthritis and brain fog seem to be winning the battle, especially lately.  They haven't won the war yet though honeys and I'm not about to give up without a fight but recently even everyday things have seemed far more difficult to cope with.

Like all spoonies I've had to learn to prioritize.  To assign a level of importance to daily tasks, chores & activities.  Each day begins with so many things I'd like to get done but since I was long ago forced to realize I simply can't go writing cheques that the Bank of Body can't cash, I know there are limits. I know I have to choose carefully my battles for each day.

There are days when even having my morning shower, getting dressed and combing my hair feel like an achievement and then there are my (unfortunately far more rare recently) good days where I can be showered, dressed and started my morning load of laundry before pain slows me down for a while. Slows me long enough to have to re-group. Maybe to take my pain meds or to wait for the pain to ease enough to move on to another (gentle) task.

Every choice carries a cost honeys.  A morning of cleaning will almost certainly mean a difficult afternoon. It can be incredibly frustrating to have invisible walls appear blocking our plans for the day but this is where forward planning is everything.

3 Ways To Cope When Living With A Chronic Illness

Being a spoonie means being realistic about the limitations your chronic illness places on you.  It changes how we live, but that doesn't mean that you have to give up, admit defeat and resign ourselves to a future of sitting on the sofa all day.  We can't ever do that dear ones.  We can't let it win you see.

We still have to live.  We Just have to live a little smarter than our non spoonie friends.  Planning is key.  Planning, with a dash of self-care included, is everything.  We have to learn to stop being so stubborn, so determined to beat the limitations set on us by our health that we end up sabotaging ourselves.

I have a feeling this post may require a beverage and maybe a cookie (or two) so I'll wait here while you go fetch a coffee and cookies.... I wouldn't mind if you brought one for me too 😃  See you back here in a min then....

OK, so maybe I planned to treat myself to cleaning the fridge one afternoon (don't judge me, I enjoy cleaning my fridge and seeing it all lovely and fresh) only to find that after finishing my laundry I'm too drained to do it.  Sometimes it's OK to lose a battle or two in order to win the war that day.  We have to learn to stop fighting so hard to keep going, that resting to allow your body batteries to re-charge is more important than a shiny fridge.  There's always tomorrow.

This is the hardest thing for me to do.  I feel awful on days when my batteries are drained.  I'm so used to keeping going, even on very painful days (there's that stubbornness I was talking about) that I feel like such an abject failure when faced with a day when I simply can't tick off all of the items on my to do list.   This can so easily lead to a downward spiral towards anxiety or depression honeys.

No.  As I said dear ones, it's OK to lose a battle or two, or even to wait a day or two to have a shiny fridge, but we absolutely must win the war.

So, how do we manage to overcome these invisible, though still there all the same, obstacles and live life on our terms not those of a pesky chronic illness?

3 Ways To Cope When Living With A Chronic Illness


1. Keep An Appointments Diary:  This doesn't have to be a diary as such, even popping appointments or significant dates like birthdays into your phone or jotting them onto a calendar hanging somewhere central (and visible) in your home, such as the kitchen, will do.  You should know at the beginning of each week what's ahead so that you can plan for it and can avoid that awful feeling of being over whelmed.  No one needs the stress of finding out the night before that you have an important appointment next day or that you've forgotten a loved one's special day. Time management can be a game changer and can improve coping skills no end.

For example, I work part time, two days a week.  In order for me to make it through my two work days each week, I have to rest on the day before my first shift.  I have to allow my body batteries to charge or I simply wouldn't make it through my shifts. I learned this through painful experience by finding myself becoming so drained at work that I actually suffered "black outs" where I lost consciousness.  After several trips to the hospital and too many tests I was told I was "writing cheques that my body couldn't cash" and to rest.

I owe my employer my best performance at work and in order to be at my best I have to rest.  It isn't rocket science honeys, my body batteries don't hold a charge very well or for terribly long I've discovered so this has to be factored into my plans.  Even knowing this I still find it very difficult to force myself to take that rest day. I always feel as if I'm being lazy if I'm honest but I know it's necessary.    

So, for two days a week my limited reserves of energy are already spoken for, with the cheque from my body bank being written to my employer.  With one day designated as a "charging" day to build up my reserves of energy and a full day after my two shifts given over to the complete exhaustion which always follows my days at work, this leaves me with three days each week available to use for Doctors (or hospital) appointments, cleaning, hobbies.. for life really.

Planning ahead, and always knowing in advance when you will be required to "spend spoons*" is the best road to success and to getting the most out of each day.  

2. Find And Set Up Coping Mechanisms: We've already talked about planning ahead.  Why not cut your day into short blocks of time.  Use a kitchen timer or the timer on your phone to allow 5,10 or 15 minutes to devote to a certain task and when the time runs out... stop.

It's amazing how much can be achieved in so short a time when your attention is focused.  Don't forget to factor in a block of rest time too.  Maybe a 15 minute rest to read or catch up with social media while you have a cuppa?  A short afternoon nap, if you can, will help to boost your energy supplies for dinner planning & preparation.

Form healthy habits which work for you.  Try to remember to eat breakfast, your body needs fuel to function at its best. It also needs hydration too, so remember to try to boost your water intake.  Why not invest an hour or so a week in making smoothie packs so that you always have a healthy energy boost waiting in the freezer?  Set (and stick to) a regular bed time too.

Some days are just going to be less than great days.  Days where nothing feels as if it goes our way and of course we need to deal with those days too.  This is where our coping mechanisms can be priceless.

I've written before about one of my favourite methods of coping with bad days. Whenever life becomes a little too overwhelming for me, when I'm just not coping so well, I go upstairs to our master bedroom and sit on the bed.   Hanging on the wall above the bed is this canvas print...

A Walk To The Beach - My Favourite Coping Method

This canvas is my escape from whatever ails me.  Whether it's pain, tiredness, stress, doesn't matter honeys.  I stare at this beautiful image and I imagine myself walking down those sandy steps onto the beach and then sitting down on the sand, closing my eyes and feeling the salty air on my face and the wind in my hair.  It never fails to calm me.  Never.

I've mentally walked down these steps so many times over the years that I can see the image clearly in my mind's eye with my eyes closed.  Find your joyful place dear ones.  It doesn't have to be on a canvas.  It can be in the notes of music or in the pages of a favourite book, doesn't matter.  Just find something you can connect with on a level that helps you to be calm, to de-stress.

You'll find lots of wonderful meditation videos on Youtube.  Some are recordings of rainforest sounds, of a peaceful river making its way through a forest with birdsong in the trees, of early morning birdsong,   there's even an aquarium with the most gorgeous fish set to relaxing music.

My own favourite though is this video of a tropical beach with only the sounds of the waves...


Heaven!

3. Be Kind.  Of course we all go through life trying to be kind to everyone around us but many of us forget to add ourselves, even as an afterthought.  Mostly because we're told thinking of ourselves is selfish.  That's simply not true!

Self care is so important for everyone but I would argue more so for spoonies.  We are already facing life hindered by a chronic lemon we don't need to add judgement, by others (don't get me started!) or even worse, by ourselves as an additional burden.

Self care should include those healthy habits we talked about above, resting when we need to, but also staying active too.  My dear Gramma always said to "use it or lose it" and that's so true.

It's perfectly natural to want to avoid doing something if it hurts, but a good physiotherapist can advise on ways to find different ways to move, to carry out tasks in order to remain active.

The surest way to lose your mobility altogether is to give up and stay in a chair or on the sofa.  You're worth so much more honeys.  If an activity becomes difficult, speak to your Doctor or ask to be referred to see a physio, there are so many ways to live smarter in order to live better and a problem shared is a problem halved as the old saying goes.

What are your favourite coping mechanisms honeys?  Please do share in the comments section.  Till next time dear ones, when I'll share my latest Avon goodies, smile lots and hug even more, huggles always xx

Huggles Always Honeys xx

* The term "spoonie" and the concept of "spending spoons" originated with "The Spoon Theory"  if you haven't read it please do visit and read.  The first time I read it, it made me cry because someone finally understood what I'd been facing for years.  It's wonderful. 

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