Hi honeys,
Living with a chronic illness completely changes our lives in so many ways. In addition to having to adapt to these changes themselves, we Spoonies face the extra challenge of trying to explain how we feel, how the illness is limiting our abilities when, certainly in my case, we might not really understand what's going on either.
How are we supposed to fight a battle when our enemy, the illness, won't tell us the rules? The changes really can be overwhelming and just trying to cope can seem like a Herculean task we just can't win.
Well, that's nonsense! I thought that way for too many years, but I took back control of my life and you can too honeys. Everyone's experiences are different, so I thought I'd share mine, how I decided I wasn't going to be a victim anymore, and how I fought back.
Spoonie life...
As a spoonie, our eyes open to yet another day where, inevitably, the first thought to go through our minds is the hope that we're able to sit upright without the pain being too overwhelming. Please body, let today be one of my good days...
The very next thought might be a flash of memory of days when we would have flown out of bed, jumped under the shower and got on with our day with no more to worry about than fitting all of our planned activities into the 16 hours or so available to us.
Life and a pesky chronic illness have changed all of that. Now everything has to be planned in minute detail to have any chance of success. Next week we have a Doctors appointment, so will have to take things easy the day before to preserve enough energy to make it there, and of course allow for the complete exhaustion that follows which can effectively rob us of the whole next day.
Meeting friends for lunch or a trip to the movies or shopping all become a distant memory. Who wants pity, especially from friends, the fight to hide our symptoms simply becomes too much trouble. Time passes and we find that no one bothers to even invite us because “She doesn’t go out anymore.”
Healthy friends, even those with the best of intentions, can’t understand why we don’t “just get on with it.” They can handle busy lives and still fit in lunch and after all, we only sit around the house all day, aren't we lucky!
Of course they’re not there at 3am when we're beyond exhausted but still can’t lie down because of the pain. They don’t see us work our way through ironing one item at a time, stopping countless times to rest or because our hands have started to swell. They don’t see the innumerable choices, the trade offs, we make each day that before would never have been given a thought.
That bustling social life we once had dissipates, so we sit at the window each morning watching others leave for work, wishing with every part of us that we were going with them. They might well have to face stresses today, targets to be met, but they’ll have actual human company too.
After a while we become accustomed to the isolation. It becomes almost a safety blanket, keeping the nasty outside world away. If we don’t go outside people won’t stare. Shop assistants won’t speak to us slowly in raised tones because they see only our cane and the supports on our hands/wrists.
The excuses start. "...I don’t have to go to the cinema, it's a waste of money it’ll be on dvd soon and I can see that movie then. I don’t have to go shopping I can order everything online and have it delivered now, so much easier...."
The trap and how to escape...
And there it is, dear ones. The trap snaps closed and you don’t even hear a sound. So underhand in its stealth, its ability to undermine any good thought we have ever had about ourselves. It takes away our confidence in our own abilities; it makes us see ourselves not as a fighter but as a dependant. “I can’t do that anymore” arrives uninvited into your mind when faced with a challenge and it simply becomes easier to just allow the thought than to argue with ourselves.
Then one day we want to go outside. Just because, and find that someone has placed an imagined sheet of glass over the front door. Even looking out of the open front door makes our hearts race and we quickly close the door again, making half a dozen excuses for why it was a silly idea anyway.
It’s insidious this mental block. It exploits our weaknesses, but it can and must be beaten. Not with a brave grabbing of a jacket and thrusting ourselves through the door and out into the world with a “get on with it” attitude. No. That does not work. Trust me, been there tried that. It didn't end well honeys. As with all things in life, the road to success lies in very determined baby steps.
What we’ve lost through dealing with the symptoms of our illnesses, we have to claw back, beginning with our self-confidence. Take stock of what you have in your life. So life has handed us a chronic lemon, but what do we have on the plus side?
When at our lowest point, it's so important to stop, just take a minute to look around. The people we see then, still in our lives, they are still there because they want to be and they can be a tremendous source of strength. Be thankful for this and then reach out. Baby steps are so much less scary when taken with a friend.
So, our mobility has suffered? Reclaim it. When I found that I needed a cane to walk I didn’t want others to see me with it. I was ashamed to look weak. To succeed, to become stronger within ourselves we have to turn that thought process right on its head.
So, we need a cane? It’s no more than a tool. It’s an aid to be used to enable us, to empower us to take on the world. Buy yourself a cane that screams empowerment. Dare the world to make a comment. Mine is currently electric blue and it looks fabulous 😃
Each new challenge is nothing more than an opportunity to learn new coping skills. It should be viewed as a new way to put our illnesses firmly in their place. We might be forced to live with it but that doesn’t mean we should live our lives on its terms.
Make a plan...
The best decision I made was to go back to work. Once made, the consequences of this decision were just another challenge to be met. My pre-illness CV was retrieved, dusted off and a “go get ‘em” attitude adopted. My CV opened doors, some of which were promptly closed on me when I arrived for my interview with my cane. Such small mindedness should be met with the disdain it deserves. Believe me, the problem lies not with us, but with them. Anyone with this mindset doesn’t deserve our skills, our time or so much as a second thought. Their loss and Perseverance will win the day.
It is not a weakness to recognise our limitations. It is instead a strength to acknowledge them and to then incorporate them into our plans. I battle extreme fatigue so part time work was the way forward. There are employers who can look past the cane, and instead see what you can bring to their company. I am living proof of this. I did find a job, in retail, and my employer has allowed me to reduce my hours when I've needed to.
Take back control of your life honeys. For every challenge you meet and beat, reward yourself. Take the time to pat yourself on the back for a job well done. Keep a journal and watch your life change. I promise you, down the road you’ll look back and you’ll be so proud of the battles fought and won.
You’ll look in the mirror and you’ll know how hard it was, you’ll recognise the strength you have. You’ll look into the mirror and you’ll see yourself smiling back. A survivor not a victim. Till next time dear ones, never forget your strengths, smile lots and hug even more, hugs always xxx
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