I have decided that “gate crasher” or “interloper” are not the right words to describe my Sjogren’s. That may be because eventually, both will leave. Sjogren’s will never leave.

Yeti works better. Yeti is a constant menacing presence. It provokes anxiety with its uncertainty. It’s hard to see. Yeti can’t be told what to do. To me, a great deal about the Yeti is like Sjogren’s.

I have a choice. I can fight against my Sjogren’s Yeti. But fighting feels like squandering precious energy. I don’t think I’d be the victor. Or I can travel along a path towards acceptance. Make friends with my Yeti, or at least learn how to live peaceably alongside it. Sometimes, it’s like trying to climb Mount Everest without oxygen.

Accepting the Yeti
The biggest challenge living with my Sjogren’s Yeti is how to be the best possible version of myself, physically and mentally. Perhaps it’s a test that faces everyone with an incurable, chronic condition that must be managed on a day-by-day, hour-by-hour basis, even moment-by-moment. Each person must find their own way of living with Sjogren’s. Here are things that have helped me.

Acknowledging the grief
I believe there is grief following the losses and restrictions of Sjogren’s. It reminds me of the grief that engulfed me when my husband of forty-two years died, over ten years ago. Then, I learnt how vital it is to be as patient, kind and compassionate to myself as I can. Life with my Yeti feels similar. I’ve lost a great deal, a large part of which is spontaneity. I must plan every aspect of my life carefully now. I see numerous changes in my lifestyle. I believe it would be odd if I were not grieving.

Strength in positivity
Slowly I’ve put in place things I find helpful. My aim is to cultivate positive thinking whenever I can. Apparently, this counteracts our default human negative thinking, a defence mechanism in ‘primitive’ humans. For example, I regularly I make a note of three things to be thankful for. Sometimes they’re basic, such as having a roof over my head, or lying in a comfortable bed. Sometimes they’re more specific, like talking with one of my family, spending time with close friends, or something that makes me laugh.

Pacing is everything.
With positivity in mind, I make an effort to focus on what I can still do. This is easier when I’m not exhausted. Therefore, I try hard to avoid becoming overly tired. I’ve a few regular timed commitments each week, such as my Pilates class. These give my week a helpful structure. I prioritise exercise, along with adequate sleep, as much as possible, and healthy eating. I’ve learnt how important these are in managing my Yeti.
I enjoy a daily walk, except on Pilates day. I plan when best to walk according to the weather forecast, as I dislike setting out in the rain. On very wet days, I’ll aim to follow a YouTube exercise session. I’m not always successful, but now I know that if I have the intention, I’m more likely to make it happen. I learnt that from when my husband died – Keep on Starting Again, and again. Repeat as necessary.
I do my best to spread activities out over my week. If I can pace myself, I have time to renew my energy in between events. Too often, I don’t manage this. There are always unexpected things popping up. But I keep trying. Hopefully, I’ll become better at it. I’ve only known about my Yeti for barely three years, although it has been lurking unnamed, in the background, far longer.

The power of kindness
Another device that can help me feel better is being kind. This could be a small kindness, such as commenting on someone’s item of clothing that I love. Phoning a friend I know is struggling. Sending a birthday card. I understand that the action itself has a positive effect on part of my brain, as well as helping the other person, hopefully. It is akin to developing stronger muscle through regular use.
I’ve also found help from a kindness mantra. I know it so well it has become easy to recite. Sometimes I repeat it if I wake up in the night. That’ll often get me back to sleep. Another useful idea I use at night time is counted breathing. I was taught a four/seven breathing technique by a fellow counsellor many years ago when working with Cruse Bereavement Care. I learnt that clients found it helped calm their sense of rising panic. I breathe in slowly, counting to four, hold my breath while counting to four, then breathe out counting to seven. If I feel agitated, I use bigger numbers, like seven/eleven. Bigger numbers demand bigger concentration. My intrusive thoughts are pushed out.

Keeping anxiety at bay
I’ve heard people say that Sjogren’s patients are often anxious. I think when I see unpleasant changes taking place in myself, wondering what the impact and consequences will be, it’s not surprising I’m anxious. Also, on a day-to-day basis, I’m uncertain how I’ll feel, and what I’ll be able to achieve. In the face of all this uncertainty, it would be odd to me if I were not anxious. I believe it’s a normal human response to be anxious in the face of uncertainty. I know some people cope with uncertainty better than others. It seems I do not.
Now I understand how important it is for me to relax regularly. I know this will help me control my anxiety. I have found useful resources. My favourite are guided meditations on YouTube by The Mindful Movement. There is a wide selection and range of lengths, from five minutes to three hours. I started with short ones until I became more used to the idea of lying apparently ‘doing nothing.’
I particularly enjoy this type of meditation because I have a voice to listen to, with gentle background music. These drown out my meddlesome thoughts. My plan is to fit one meditation in every afternoon, sometimes in the morning as well. I use an hour long one in the afternoons. My family call it my ‘zeditation’ as it’s sometimes a combination of zizz and meditation. If I have a full day out, I‘m unable to fit in my zeditation. Then, I’ll plan to do nothing when I arrive home, except eat, drink, and go to bed.