I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested. No wonder I feel exhausted! Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!
Yet, strangely, this feels normal to me. How weird is that?!
Just last week, a friend was telling me how exhausted she was. She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work. And I understood! Yet it also gave me a deeper perspective on what most able-bodied people find taxing.
And it gave me a great sounding board for helping her to better understand what my daily life is like. Of course, I didn’t share this with her on the spot. She had a right to her own exhaustion and some empathy from a caring friend. Bottom line, isn’t that what we all crave? But later in the week, I brought up her experience as a starting point…
I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests. I told her that I, more than most, could 100% relate to her experience. Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.” I saw recognition light up behind her eyes. And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis. We all need a compass point to help guide perspective.
Another dear friend has often said to me, “I imagine how horrific it feels to have the flu. And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.” She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.
So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family. Our barometer for pain is at a higher set point than most. We have to be that way in order to survive (and hopefully even thrive, at times!).
But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means. Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests. The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news? Is this the doctor that will have a new idea to help me with my illness(es)? How many slips for subsequent tests will I leave here clutching today? Can I even afford to go to the doctor’s today? How am I going to get there; am I strong enough to drive myself? Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?
Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse. Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body. Then doctors like to (and, let’s face it, should be) physically examine your body, too. Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.” Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!! And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.
By the time we start to recover, it’s time for the next onslaught!
And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!
We don’t need your sympathy. But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us. And give us empathy and understanding. That’s all we truly crave.