Chronic

 

by Amanda Jones

a sloe gin

 

Witnessing pain in a loved one and not being able to help causes a variety of choices. I chose love as Mum had taught me. Unfortunately that was a sacrifice of the ultimate self love which I needed. It is only with this recognition that ego becomes lesser and peaceful joy the normal.

From around the age of four I became aware of the seriousness of Mum’s diabetes. Having seen hypos with bitten tongue and fainting I knew exactly where the glucose was, how to mix it, how much to add to water and how to dab it onto Mum’s lips if she was unconscious. For a hyper I knew how to inject insulin for her. I listened at her door when she went to bed to make sure she was still breathing. And so began the stressful worry which eventually made my own health become worse and worse. Now, quite rightfully, they are linking childhood stress to physical health in adulthood, beyond the blame of anxiety on the mental aspect. Funnily enough it was still after I had settled my anxiety that the label stuck and the exhausting fight to be believed and supported through years of misdiagnosis and blame led to more ill health. This was the same for Mum too.

After her eyesight failed Mum’s blood pressure due to kidney damage slowly damaged her kidneys more, which in turn affected her heart, liver and pain. There were countless 24 hour urine sample collections and ferrying of them on the bus to the hospital. I often took time off school to accompany her and guided her past the crowds where her white stick was not noticed by mums with pushchairs. They always took the full brunt of my strong arms as I protected Mum to stop her from being knocked over.

Mum’s heart began to struggle more after she had experienced years of breathlessness. Eventually she had stents fitted to battle the plaque of atherosclerosis and I saw her at her very worst in Papworth Hospital. At that point in time she lost her smile but even then gained it back after a small, brief recovery.

As Mum never gave in she always found something else she could do. She felt her way to learn the harp, became abstract in her painting and in her last year took up an Open University course in Ancient Greek!

But, as her feeling in her hands became less and less she was told it was due to knitting. Of course it wasn’t. It was the early days when peripheral neuropathy was little understood but eventually this diagnosis was added to her long list and I watched as more parts of her poor body failed.

The neuropathy didn’t stop there. It affected her arms up to her elbows, her feet and legs to the knee and made her doubly incontinent. After infection upon infection she had a permanent supra-pubic catheter fitted. The nerve pain and sensations from neuropathy caused taste disturbance, grip loss, severe pain to hot and cold, muscle weakness, cramps, muscle and joint pain and shakiness.

So we made 2004 the best. Mum was waiting for her first dialysis as her kidney function had decreased so much. A fistula was due to be fitted in her arm. It was the most terrifying thing she could think of and she didn’t want it.

With some persuading I encouraged Mum to use a wheelchair as she was so stubborn that she would walk everywhere with her delta frame that we didn’t make it past the car before she was exhausted. It enabled us to go further, beyond the car, into a lovely garden centre where she could then have an enjoyable walk before she needed it again.

Osteoarthritis in her back, neck and hips was added. Then the treatment for her kidneys caused a new symptom and she started having seizures and TIAs aged 55. With the medication for these liver damage occurred, never to recover.

But what does physical pain and debilitation really mean and do?

Mum was adamant that any dementia would be worse than all she endured. Until the very end she held on to her ability to think her way through life and use the loving peace she held so well to help her and others.

 

 About the author

Amanda has been writing since childhood and along with short stories she writes her Missy Dog charity series, poetry, non-fiction and horror. You can find her here:

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