4. Fight the Good Fight

It took 5 weeks and a number of failed lumbar punctures before my sister was diagnosed with multiple sclerosis (MS). She had first been diagnosed with transverse myelitis, a condition resulting from inflammation, one of the symptoms of which was a loss of sensation from the toes slowly creeping up towards her lungs. I refuse to give any of these conditions capital letters, only the acronyms, as they are such disruptive and life-changing conditions. After demanding an experienced doctor perform the next lumbar puncture, things moved forward. A doctor was called in from another hospital who later diagnosed MS. Being in hospital for those 5 weeks allowed me to focus on her children, the youngest of which was 3 years of age, who showed no obvious signs of being on the autistic spectrum at the time. To be honest that would have been too much to cope with had we any inkling. Even though my niece’s behaviour was intense, I put it down to the drastic change in her circumstances. This child who had until then lived miles away and did not know me, was now quite attached to me, as I and her grandmother were the closest adult links to her mother, as well as her older sibling.  I would now play mother to both children for the next 5 weeks.

Getting a correct diagnosis was the beginning of many fights.  Others included getting carers to attend to my sister before 12pm each day.  I put that down as a lost cause, after travelling a few hundred miles to see her during her first week home to find that she slept in the living room chair because she had to get down the stairs on her backside, or that she could not get out of bed at all.  Fighting her estranged husband for a divorce, contact, maintenance payments and dealing with the effects of his serial adultery, were some of the others.  One of the most ridiculous fights related to my sister’s employment, red tape and unsympathetic attitude of those she worked for, who did nothing more than tick boxes as part of the bureaucratic process towards ‘dismissing her as inefficient’.

It was only in 2015, 8 years into being a registered carer that I came across a book by Hugh Marriot ‘The Selfish Pigs Guide to Caring’.  Unfortunately, this book confirmed that I was already doing what was required. I had to fight the good fight in order to crisis manage the situation and no one was going to rescue me.  The writer clearly and honestly expresses some of the feelings I have felt on many an occasion, especially that being a carer for a family member is an emotional rollercoaster.

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About 95 Frames per Second

This blog is about my caring journey, looking after family members with high functioning autism / aspergers, multiple sclerosis, getting older, etc. in the midst of trying to function normally. Hopefully along the way you will find my experiences useful. 95 frames per second is roughly the frame rate life runs at.
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