Chronic illness sucks! There, I said it. It hits us where we live. It's insidious. It chip, chip, chips away at everything from our energy supplies, our general health, and outwards into every aspect of our lives.
Fellow *spoonies will know only too well how it goes.... " I'd so love to see that movie but I know that an evening out will leave me completely drained for a day or two, I'll wait until it's released on dvd... yes that's what I'll do..." and on and on until it's taken away far too many good things we have in our lives to make us smile. Except it doesn't have to be that way honeys. It just feels as if it does at times.
This past weekend has been very challenging because my workplace, being retail, was incredibly busy and it will be every bit as busy now for the next nine to ten weeks at the very least. Uppermost in my problems right now isn't the pain from arthritis, spoonies learn to cope with pain, it's that my iron level has dropped from the already constantly low point which passes for normal for me.
I know from (long) experience that in time it will rise again to its usually still low but more manageable level but for now the almost constant fatigue I live with is that little (seriously Rosie? little?) bit more challenging. In other words dear ones, my usual "running on nearly empty" feeling is becoming more difficult to hide from the outside world in general and to my employers in particular.
I'm lucky, blessed actually, that I only have two days a week at work where I have to, on the outside anyway, wear my mask, to appear to be perfectly fine and dandy. Bright of eye and bushy of tail so to speak. I used to work four days a week but was forced to reduce my hours due to awful "black outs" or fainting spells I was having both at home and at work. I was told by a doctor at the hospital at that time that I had been "writing cheques my body couldn't cash" He told me that if I wanted to keep working I had to "work smarter."
Working smarter meant to work with my body and not against it. Self care is so very important and this is too often forgotten in the fight to keep our challenges hidden, particularly from the outside world. One of the most difficult things spoonies are faced with dear ones is the complete devastation of our own sense of self image, self worth.
It's incredibly difficult to admit to oneself that the things previously taken for granted, boundless energy, the ability to do what we want, when we want to do it without notice simply vanishes to be replaced by limits over which we have little to no control. I know from chatting with other spoonies that in our current economic climate I'm not the only one afraid of losing my job. Of being replaced by someone who doesn't have health challenges. There are many of us wearing masks.
Our first instinct, of course, is to fight against the limits our health imposes on us with an "I'll show you" attitude but this is doomed to failure simply because by doing this we're treating our own bodies as the enemy. Adapting is not submission honeys, it's survival. When I reduced my hours I began to cope again. I learned how to plan ahead. How to carefully allot my limited reserves of energy as needed. How to use my spoons* wisely.
image via PicMonkey
Arthritis makes movement painful but in order to prevent further loss of mobility we have to keep moving. Something my beloved Gramma always referred to as "use it or lose it." The solution is to plan carefully and to do little and often. To keep moving but to also rest when your body tells you to. Adapting is not submission. It's how we win. It's how we remain independent, it's how we live life on our terms. It's how we win.
Managing pain and fatigue, once mastered, can make such a difference honeys. Please don't be afraid to chat to your doctor and ask for advice. A problem shared is a problem halved as the old saying goes. Sometimes another pair of eyes can see solutions we're missing and at times it's good just to be heard, to know we're not alone.
Something else, just as important in my humble opinion, as coping skills is to preserve joy in your life. It doesn't have to be a singing, dancing cabaret every day but there should be some joy in every day. Mine is wrapped up in my beloved Hubby and in our dear furbaby. They make me smile till it hurts, they make my heart smile every single day. You need to find your joy honeys and remind yourself every day how blessed you are. Chronic illness does not define you, you can win.
Wishing you a surplus of spoons and smiles every day dear ones. It's getting cold so please stay warm and safe. Add an extra blanket and hug your furbabies. Till next time, smile lots and hug even more, huggles always xx
* If you haven't read it, please do read The Spoon Theory by Christine Miserandino it's inspiring and explains wonderfully the choices those living with chronic illness face every day.