Time to Add a Splash of Positive to My Half-Empty Glass

Time to Add a Splash of Positive to My Half-Empty Glass

Scleroderma and the Ordinary GirlWhile I have been recovering from my knee replacement surgery, I have been giving much thought to how I view things as a scleroderma patient. I have been pondering an age-old concept, considering whether the glass is half empty or half full. 

Lately, it seems to me that I am constantly assessing my glass to be half empty.

To be honest, my recovery is proving to be an extremely challenging time, and quite frankly, I am somewhat of a “negative Nellie” at the moment. I am certain I’m the worst patient ever, and have found that the complication of having scleroderma on top of everything else just makes it all so unbearably difficult.

The physiotherapist cheerfully tells me to “walk, walk, walk, just as much as possible, dear, it’s SO good for the connective tissue” in her sing-songy voice with the “encouraging” tone. She cheers loudly as I do my last couple of steps with the crutches over the “finish line.” Secretly, I want to hit her with my sticks and just go to bed. I feel ashamed that I even think this, then feel worse about myself. Not only do I feel like a bad patient, but also I start to think I’m a bad person, too.

It has all become a bit much, and I would like to crawl into a hidey hole, curl up like one of my cats, and wake up when everything is healed. Except I can’t crawl or curl at all because of this darned sore leg that I can’t bend properly.

Becoming grumpy and overwhelmed with negativity can happen for many different reasons. Lately, however, I have especially noticed that attempting to drag my view around to optimistic takes such an effort. All I seem to be able to see are the barriers toward my recovery. Too many stumbles and near falls when I try to walk, horrible joint pain when I try to negotiate my crutches, and pain relief that makes me too drowsy to concentrate on doing my exercises… so many things to watch out for and overcome, it seems.

It has taken a few days of consideration, but I think I have found my “positivity block.”

Since I was diagnosed with scleroderma, there has been a certain practice that occurs; it’s called screening. It’s when a barrage of tests are performed to draw a clear line in the sand. It helps to indicate how advanced the disease is. Subsequent tests are performed. In my case, some are yearly or every six months, and blood tests are always taken each month. Clearly, this keeps my medical team informed about whether the disease is progressing, helping them consider early intervention and treatment, if available.

I believe screening to be a good thing. But with it, a rogue seed is planted in my mind that may have gotten away from me. I have learned to become over-vigilant, to look out for and expect problems, to watch out for sneaky complications and catch those buggers before they get me. Basically, subconsciously, I think I’ve learned to look at the glass being half empty, just in case.

This unfortunate mutation of something good (early screening to catch any arising issues) into over-vigilance and negativity has, horrifyingly, become second nature to me. As a result, I seem to have become a grumpy old fart. 

I know the knee surgery has added extra pressure and hasn’t helped my situation. But it has helped to clarify how this negativity may have begun. My plan now is to try to catch myself as I assess how full my glass is at any time.

Although this means extra effort on my part, my feeling is that catching it at this level is the best place to begin. I am hoping that will then make those walks I have to do look less like dreaded torture sessions and more like small packages of progress to be celebrated afterward by a little rest on the couch.

 I will keep at it.

My crutches await. Wish me luck, readers, as I sally forth down the hallway for my second walk today!

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

 

4 comments

  1. Kathryn says:

    Thank you for sharing. I wish you a wonderful outcome. As a lifelong glass-is-half-empty person, (I think I exited the womb as a cynic) I can totally relate to the things you said. I was diagnosed pretty much by accident last year, after several years of mysterious, seemingly unrelated symptoms that began with Raynaud’s Phenomenon and blood pressure that was wildly out of control, followed by hemoglobin counts that had me circling the drain. My reaction to the diagnosis was unexpectedly calm, however — actually a sense of relief that the puzzle pieces had finally dropped into place. I went overnight from being an unspeakably bad patient, secretly ashamed and blaming myself for something I thought I had “caused,” to one who started following doctors’ instructions, and for the first time in about ten years, started feeling better. Scleroderma is no picnic, and I rarely tell people about it because, frankly, the word generates a lot of blank stares that suggest lack of interest. I just read a lot about autoimmune diseases, learn what I can, and try to take the journey one day at a time. Some days suck and others don’t. I hope that one day, the latter will outnumber the former. Anyway, best wishes and thank you. It’s good to feel not so alone.

    • Kim Tocker says:

      Hi Kathryn, and thanks so much for your best wishes, and for reading my column. It is such a relief once they finally can give a diagnosis isn’t it? I remember when my Rheumatologist said there was something serious going on and I finally felt believed! Although a lot to come to terms with, taking one day at a time is certainly the way to go, I have found this too. You certainly never know quite what you are going to wake up with thats for sure! The key is to be kind to yourself and do the best you can each day. All the very best in your Scleroderma journey 🙂

    • Kim Tocker says:

      Hi Evelyn, I tested positive for a high titre centromere antibody, and together with all my other symptoms was given a diagnosis based on these findings. However they are now looking into other autoimmune diseases that I may also have, including lupus and Sjogrens. I hope they can sort out your diagnosis for you, a good Rheumatologist is really important. All the very best.

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