I was diagnosed with Sjögren’s about fifteen years ago.

I have periods of dry eyes, dry mouth, also dry nostrils, and more recently days of fatigue, more often morning fatigue, as well as sleeping problems. I try to keep a regular sleeping pattern, and wind down with relaxing music 20 minutes before bed. I also have abdominal discomfort, colic and occasionally gastric problems. I have a cup of chamomile tea with breakfast and dinner, and a cup of fennel tea later in the day. I resist the temptation to wash my food down as that doesn’t really aid digestion but take sips after chewing my food well. I have acid reflux which I think is made worse by the dryness, and so keep myself hydrated with water. I have days of brain fog which may or may not be related to Sjögren’s . I have found meditation helps to bring more clarity and helps with decision making. I also experience numbness in fingertips, but especially my feet particularly the soles of my feet. I sometimes have stiffness in my legs and a little arthritis in my knees. For the last three years I have had some problems with my balance which may be due to sensory ataxia.

It has not really affected my social or family life, but does some days limit what I can do when I have tiredness and fatigue. Sometimes I feel this limits what I want to do, as I feel I am mentally slow in my thinking. The worst thing for me is this feeling of being just unwell and not really being able to put a finger on anything specific or understand why I am feeling this way. However, I don’t spend too much time analysing it, as this can cause stress. I listen carefully to the messages my body is giving me, and tune into what my body is doing. I think some reflection time is extremely necessary in the healing process, and to understand why the illness has come. I think it is very important to be the ruler of any illness and not let it take over our lives even on our tough days.

I only really discuss it with my doctor, but when l have mentioned it to friends, more often than not they don’t know what it is. People generally speaking don’t know much about the condition. So, maybe we need to put more information out there, and of course, as with all diseases, we need more research into the condition.

I have been a meditator for thirty years. This has helped me greatly on my journey! It has kept me positive, always given me hope, greatly reduced my stress, and made me see that how I approach my situation, and my attitude to it can bring a totally new perspective, and a more favourable outcome. We all need to empower ourselves with our wisdom and the faith that we can bring ourselves through anything. I have also learnt ways to manage the condition in a way that does not limit my life or stop me enjoying it. Sometimes I will push through the fatigue as I know I am pushing through a mental boundary too. But you really have to use your insight to know when to do this. I am always guided by insight and intuition about what is right for me!

There have been a few moments that have brought hope or strength during this journey, but each day I acknowledge some progress I have made. It may be a physical thing, or some problem I have solved, or a solution I have found. However, more often it is some small thing that has happened. It can be just one little thing. Appreciate that little something that happens as it is that which will keep you anchored above those difficult times. Even in a bad situation I have experienced that there is always good to be found even in the bad. I have realised through having Sjögren’s that I have far more inner strength than I thought!
Every day congratulate yourself on having come this far! I would also suggest some form of daily relaxation or meditation to keep you grounded and positive.

I learnt my meditation practice through the Brahma Kumaris. They also give stress management, and positive thinking classes all free of charge, and they have centres all over the UK.

I always try to remember whatever discomfort I am experiencing, it will pass as everything does. The person inside this body is ok. The body may feel really rough at times, but I am something quite distinct and separate from my body. I have experienced this many times in my meditations. This enables you to rise above and beyond what the body is doing. I think it’s important to remember you are always in control!

I wish everyone going through this condition much peace, happiness and good fortune in the coming year.

Very Best Wishes
Liz