Living with a chronic illness completely changes your life in so many ways. In addition to having to adapt to these changes themselves, sufferers face the extra challenge of trying to explain how they feel, how the illness is limiting their abilities when, certainly in my case, I didn't really understand what was 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.
Your eyes open to yet another day where the first thought to go through your mind is “please let me be able to sit upright without crying.” The very next thought is inevitably a memory of the days when you would have flown out of bed, jumped under the shower and got on with your day with no more to worry about than fitting everything you had to do that day into the allotted 16 hours or so available.
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 you have a Drs 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 you of the whole next day.
Meeting friends for lunch or a trip to the movies or shopping becomes a distant memory. Who wants pity especially from friends, the fight to hide your symptoms simply becomes too much trouble. Time passes and you find that no one bothers to even invite you because “She doesn’t go out anymore.”
Healthy friends, even those with the best of intentions, can’t understand why you don’t “just get on with it.” They can handle busy lives and still fit in lunch and after all, you only sit around the house all day….
Of course they’re not there at 3am when you still can’t lie down because of the pain in your spine or shoulders. They don’t see you work your way through ironing one shirt at a time, stopping between each garment to rest your spine or because your hands have started to swell. They don’t see the countless choices, the trade offs, you make each day that before would never have been given a thought.
That bustling social life you had dissipates, so you sit at the window each morning watching others leave for work, wishing with every part of you that you were 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 you become accustomed to the isolation. It becomes almost a safety blanket keeping the nasty outside world away. If you don’t go outside people won’t stare. Shop assistants won’t speak to you slowly in raised tones because they see only your cane and the supports on your hands/wrists.
The excuses start. I don’t have to go to the cinema, 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, much easier.
And there it is. The trap snaps closed and you don’t even hear a sound. So underhand in its stealth, its ability to undermine any good thought you have ever had about yourself. It takes away your confidence in your own abilities; it makes you see yourself not as a survivor but as a dependant. “I can’t do that anymore” arrives uninvited into your mind when faced with a challenge and it becomes easier to just allow the thought than to argue with yourself.
Then one day you want to go outside. Just want to, just because, and you find that someone has placed a sheet of glass over the front door. Even looking out of the open front door makes your heart race and you close the door, making half a dozen excuses for why it was a silly idea anyway.
It’s insidious this mental block. It will exploit your weaknesses, but it can and MUST be beaten. Not with a brave grabbing of a jacket and thrusting yourself 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 determined baby steps.
What you’ve lost through dealing with the symptoms of your illness you have to claw back, beginning with your self-confidence. Take stock of what you have in your life. So life has handed you a chronic lemon, but what is there on the plus side? When at your lowest point, stop and take the time to look around. The people we see then, still with us, 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 your 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 yourself you have to turn that thought process right on its head.
So, you need a cane? It’s no more than a tool. It’s an aid to be used to enable you, to empower you to take on the world. Go buy yourself a cane that screams empowerment. Dare the world to make a comment. Mine is currently electric blue and looks fabulous :)
Each new challenge is an opportunity to learn new coping skills. It should be viewed as a new way to put your illness firmly in its place. You might be forced to live with it but that doesn’t mean you should live your life on its’ terms.
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 which were promptly closed on me when I arrived for my interview with my cane. I was once told, I kid you not dear ones, that "we don't hire people like you" Such small mindedness should be met with the disdain it deserves. Their short sightedness is their loss. They don’t deserve your skills, your time or so much as a second thought. Perseverance will win the day.
It is not a weakness to recognise your limitations. It is instead a strength to acknowledge them and to then incorporate them into your 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 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, be sure 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 recognize 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, hugs always xxx