A watermark is an outline of the tide’s advance and retreat. In some ways I feel like I am part of that outline, lying at low ebb, among the beautiful broken detritus of the sea. These last weeks I have been merely functioning: meeting the very real needs of the work that I can do, and then resting, resting, resting in the uneasy slumber of Sjogren’s fatigue.
Sjogren’s syndrome is not considered a life-threatening disease, although those of us dealing with its systemic effects know that it can lead to comorbid conditions that are indeed life-threatening. There’s another kind of threat from Sjogren’s, however: trying to resolve what doctors characterize as its innocuous symptoms with the major impact it has on living life – without succumbing to hopelessness and depression. The endless fatigue, especially during a flare, steals your life away, hour by hour, day by day, year by year.
Whether the challenge is Sjogren’s or some other disease of the body, I know I’m not alone in this situation. Over the last weeks, I’ve mostly just had the energy to keep up with some reading, and thereby stay connected with the lives and struggles of my heart family and friends across the world. I see people still managing to shine despite shocking quality of life, in situations that are all but dismissed by medical practitioners.
It’s been well over two years since the “new” symptom of pain in my right abdomen appeared and has not relented, and I’m no closer to an answer. My GP reports that the specialists I’ve seen concur it is myofascial pain due to fibromyalgia, and every part of my being knows this is WRONG. I am familiar with that pain and the quality of this pain is different. However, I am unheard, and I’ve come to accept that Western medicine is based only on what it can see on scans, and catastrophic medicine is very much the order of the day. I’ve realize that I will just need to soldier on with this pain, and the new distressing bowel symptoms of the last two months, until something shuts down, blows up, blocks, crashes or otherwise causes catastrophic system failure. What truly breaks my heart though is I know that as difficult as this pain is, as poor as my quality of life is, so many of my friends deal with much worse.
For some time, I have felt like I am approaching a watermark: a major shift in my thinking, my spirituality, my body and even my life. The way I have lived recently – eking out a living with my part-time job and resting for most of each day has to change in some fundamental way. I cannot produce more strength or energy, no matter how strong my spirit is, so I must change the way I use the six hours given me on good days. Until recently, I spent my spare functional time obsessed with my part-time job (technical writing) and continuing to produce work that represents my all – my 110%. Unfortunately, this also meant lots of unpaid time worrying about the systemic problems at work and worrying that I am well-liked and respected for what I do, rather than who I am. That has to change, and if there is a blessing in my illness, it is that the fatigue has taken away the energy I could dedicate to such a pointless pursuit.
All this activity has meant I haven’t had time for writing here, and unfortunately, with the coming of the sun, I’m going to be even more restricted until the fall and the return of the rain. However, I’m determined to shift the balance, and to spend more of those good six hours doing things that fulfil me, and furthering my goal to spread knowledge and understanding about the plight of the good, kind and sensitive people I know who are decimated by diseases that doctors not only minimize, but ignore.
In recent thoughts, I’ve turned my thoughts back to my younger self at 24, some 23 years ago in the early stages of this disease, and the critical years thereafter. In 1993, I spent about 10 days in hospital – not for the illness that was later identified as Sjogren’s syndrome, but for depression. While in hospital, I met an 18 year old girl with many issues – someone who, but for a slip of fate, I could have been. She lived on the street to escape the cruelties of her past life and her present illness, and I took her into my home for many months, in a move that could have well advanced the decline of my already struggling marriage.
A- introduced havoc and dischord into a most difficult time of our lives. However, A- also introduced me to something beautiful in that time of great struggle: the music of Enya. I still remember the first time I fitted in a pair of earphones and heard the opening haunting strains of Watermark. It brought beauty to my interrupted life, and two minutes or so of the most beautifully orchestrated hope I’d ever heard.
It’s perhaps not surprising at this time that I turn back to that first Watermark. As Longfellow once said, “the lowest ebb is the turn of the tide”. I am standing now at the watermark, with the desire that whatever I do from this point forward, it will be done with love and intention.
I will not let life steal my hope.
Here is a link to Enya’s beautiful Watermark. My apologies if there’s a loud, abrasive ad prior to the music!