I always look forward to the New Year, full of potential and new experiences. I no longer make resolutions, only because they come with them old pressures and negative mental tapes of past failures that I’d rather not have hanging over me as I start things off. I’ve learned to simply take one day at a time with one objective in mind. That way, every day shows accomplishment and I get those immediate results that just never come to be when my goals are too big or I take on the whole year. This year, unlike the past eight years, I am unfortunately starting out with some challenges that are vaguely familiar, complicating things for me…and I have to admit to being a little disheartened.
One of the most important points I make when co-leading the Living Well With Chronic Conditions workshops is the difference between acute and chronic conditions. I may have covered this before, but bear with me as it is well worth repeating.
Acute conditions usually have one cause, begin rapidly with a short duration and are diagnosed rather accurately. They often have cures that physicians can easily guide us in taking clear, decisive measures to getting ‘well’. Chronic conditions are, of course, the opposite. They gradually occur with many symptoms that come and go with no specific origin at first. There is often more than one treatment or medication to chase symptom management, tests are usually inconclusive and cures are rare. The roles of the health professionals are, at best, only able to educate and advise us, frequently requiring us to build a partnership with them in learning how to ‘manage’ rather than ‘return to’ optimum health.
For several years now, I have been relatively lucky and blessed to have my lupus of the more manageable type, although kidney involvement can get serious even without any apparent symptoms. I have learned to know how my body works, what it responds to best and the unique needs it seems to require of me. There are times when I do refuse to listen and it is very good at letting me know when I screw up. My symptoms have been quiet and my blood work has shown no outward activity. That’s the thing about lupus – we ask ourselves in the beginning “Is this lupus?” with every odd symptom or virus that comes our way. After we get better at learning the difference and things do improve, we can’t help but want to simply believe it is merely the flu. We want to put lupus behind us and take every opportunity to do so. I never had the typical lupus symptoms and apparently I never will. So being on the lookout for ‘lupus’ was easy for me to let go of and minimizing the little stuff came quite naturally. The only thing that kept me focused on chronic illness at all was my health experiences from the past and my current profession.
Despite knowing better, however, my lupus is here to remind me that it is still very much a part of who I am.
How is it possible that I, someone who stresses to others frequently that “chronic means chronic”, can forget that my own lupus never actually went away? How often do I hear participants confess with sadness that, when they have good days they feel like their old selves again,… only to cry when their symptoms return and they are faced to re-live their losses all over? That constant battle between what their life was and what their life is now. Although I often express gratitude to my body when it cooperates and allows me to find some joy in my days, I admit that I took for granted the ease of movement, the flexibility in dealing with daily hassles and the boundaries that I pushed to the point of tempting a full-blown flare.
After years of nothing to really complain about, my lupus has returned with the memories of the pain, stiffness, swelling and concern right along side it. I will have to re-learn the strategies to overcome the constant pain signals because my tendons have become inflamed. I will have to adjust to the swelling in my legs and the need to prop them up from time to time. The blown blood vessels and the more frequent lab work to monitor my kidneys. The realization that my morning stretches will be met with much more resistance both physically and emotionally, now that my aches will beg me to simply stay in bed. My work will be more difficult and I will have to take more breaks, impeding my flow in writing and facilitating. I will have to just slow things down after years of being able to operate at a much faster pace. I feel myself digging in my heels and desperately trying to figure out what I “did” to bring it all back to this extent.
The fact is – and I KNOW this – is that lupus is a chronic condition with a constant cycle. Out of sight does not mean out of mind. Living as well as we can is possible and is important to aim for, but we are faced with the reality that we can never truly forget things aren’t right…and that hurts. Regret that I took advantage of my blessing rises up within me and I talk it down as quickly as I can, knowing that my response to the symptoms right now will set the tone for how these days ahead will play out.
Taking on the role of victim or the spoiled child fighting back to the word ”no” will only create a ‘ me vs. it ’ perspective and will ‘loop’ right back physically to my immune system detecting more threat.
I find myself back to reliving my past and, quite honestly, am in a better position now after the years of working with, listening to and learning from so many others who have struggled, too. I think this will be good, as painful facing it all again will be for me in many ways. I have never believed that I was cured, but I did believe the worst was well behind me. The timing for it all to return at the beginning of the year couldn’t be more appropriate. Nothing truly changes for me as I take one day at a time to meet an objective that I want to reach. I will create my days working to reach an immediate reward that will help me face my next day with a little more hope. I didn’t deserve this or really even earn this recurrence, because my health is a cycle of symptoms, seen or unseen, that I need to remember and respect. What it does give me is the opportunity to get through it all successfully, again, and reminds myself of that strength residing within me that I had forgotten over these past years. It’s this simple reminder, not my lupus, that has been my biggest gift this season.
I am wishing you all many gifts, lots of hope and peaceful insights touched with joy throughout the New Year~
