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Things that Changed my Life


    5 Things that Changed my Life.

     For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

    1. Diagnosis. (Mine).  Being diagnosed with lupus was actually a great relief in some ways. I had been sick on and off most of my life with symptoms that seemed totally unrelated. I’d just been sick all the time, with no apparent reason. An explanation, gave me some validation – I wasn’t malingering or imagining things – I really was sick, and probably had been all along. I learned as much as I could about my condition, to work out how I could help in my own care. If I don’t work to improve my health as much as possible, how can I expect my doctors to put their best effort in?

    2. Diagnosis. (My kids’). A different condition all together. I had worried about my kids’ development and social skills. As a young mum, other people told me I was imagining it, that there was nothing wrong. That was until they started Kindy and Preschool, and suddenly teachers were telling me I had to get something done about multiple problems they had with social skills, fine motor skills, etc.  The diagnosis of Asperger’s Syndrome allowed me to actually learn about what was happening, and help them to understand their strengths (not just the weaknesses others would point out to them.)

    3. Divorce. I was in a very bad marriage, until not long before I was diagnosed. When the diagnosis happened, I was separated, but not yet divorced.  Realising I had a condition that actually did kill people, I was forced to look at my life and what was important. One of the things I realised was important was protecting my children’s interests. Until I actually had a divorce, I could not make a will that could exclude my ex-husband (at least one that he could not contest.) This was my impetus to actually go through the time and effort to get the divorce and make a will, setting someone else as trustee until the children reached adulthood. (The youngest will be 18 in four month’s time – the whole issue of a trustee will simply not matter at that point.) It wasn’t just the divorce – which did leave me finally feeling free of one great burden – but the whole reassessing my life, deciding what was really important and what I had to free myself from.

    4. Retirement. This was a real trauma for me at least initially. I took my long service leave, and all of the annual leave I had owing in the year after I was diagnosed – I was trying to put off taking long term sick leave. Then I took a whole year of sick leave. Eventually, my health situation forced me into what is termed “temporary retirement”.  There is still some hope I will return to full-time ministry, but it’s not looking like happening in the forseeable future. For my first year of retirement, the wonderful people of Ashgrove West Uniting Church allowed me to do one service per month for them. For that year, one Sunday morning per month, and a day or so of preparation work per month was pretty much the absolute most I could do. This year I formally became their minister – but only at 30% time. It’s such an amazing congregation that they look after themselves most of the time. I have the joy of feeling that I’m contributing to the life of the church, but not the standard workload of ministry. I have a supportive, understanding, congregation. They’re a small church who couldn’t afford a full-time minister, and I’m a minister who’s not in any state to work full-time.

    5. New Relationship. My rheumatologist had told me for years that I needed to get married. I always resisted trying a new relationship because my marriage had been such a disaster. I eventually put my profile on an internet dating site. I half-expected that I would not find any nice people. I actually found a number of nice people, as well as a few quite creepy people. For more than a year now, I have been dating Mr Wonderful. He really is wonderful. He is patient, understanding, and very kind. He’s aware of my condition and encourages me to rest when I need to, and to say when I need extra support. This relationship has been one of the best parts of my life. Having spent 16 years in a marriage where I didn’t feel valued – I really hadn’t expected anyone to love me with all the limitations I have now. Every day I thank God that Mr Wonderful has become a part of my life – that I do feel loved for who I am. This relationship is part of what keeps me grounded, even on my worst days, I am reminded that I am more than this horrible disease.

    This post was written as part of NHBPM – 30 health posts in 30 days: