Fibromyalgia in Alida’s children

‘Fibromyalgia is something I’ve not heard of before. I cannot find it in my reference books.’ Bea refilled her tiny coffee cup.

Sophie stopped washing vegetables and faced Bea. ‘Did Mum never tell you about it?’

Bea shook her head slowly.

‘Well, I hope I can make it clear. Mum suffered chronic pain and fatigue for over thirty years, but not many people understood what it was.’ Sophie poured another mug of ginger tea. ‘Worse still, my sisters thought it was just in her mind. For some reason, though, I could empathise with her even before I was diagnosed with fibromyalgia …’ She gulped down all the tea that was left. ‘After dad died, I developed pain through my body and couldn’t sleep at night.’

‘Was the pain even worse without sleep?’

‘Of course. But what really set it off was my sisters’ behaviour. It shocked me so much.’ Her voice cracked, and she blew her nose.

Bea reached out and held her hand. ‘You are the strongest woman I know, given all you have already overcome.’

‘Oh crikey. I just worked out that Alida died when Mum was fifty-one years old.’ Tears trickled down Sophie’s cheeks. ‘There are too many bloody similarities showing up, like developing chronic pain and fatigue at about the same age.’ Sophie’s face contorted. ‘Like many people with fibromyalgia, Mum and I both have a lot of suppressed trauma. So now I’m doing everything I can to heal mine.’

‘Your determination makes me want to live longer to see you succeed.’ Bea smiled.

Sophie poured another ginger tea. ‘Already you have given me so much healing. I’m so lucky to have you in my life.’

‘I enjoy your company too. Especially since you know when to do your own thing.’

‘Thank you Tante Bea, but you seem to be the only family member who thinks so…’ Sophie’s voice quivered as she stood to resume washing vegetables. ‘That’s why I travel across the world every year…’ Her face lit up as she turned to Bea. ‘There is nothing better I could do with my holidays than be with you.’

Bea rinsed her cup and replaced it on a saucer ready for her mid-morning drink. ‘What are your plans for today?’

‘To buy an internet access card to use in my new tablet computer here, so that my reactive body can be spared daily cycles to Maastricht to use the library internet.’

‘All that technology is too confusing for me.’ Bea recoiled. ‘I’ll go upstairs to make myself beautiful.’

Sophie dragged her shopping trolley and attached backpack over the cobblestones for nearly a kilometre around Maastricht’s seventeenth-century city centre’s main shopping precinct, packed with ambling tourists.

She resisted the urge to video her favourite building, the original 1470 Dinghuis, at the end of the high street, as she’d done during each of her previous eight visits to family in Holland. Sophie could imagine the mayor addressing the townspeople from the balcony at the apex of the stairs. She felt that the cubic Dutch Baroque Townhall built in the market square in the seventeenth century didn’t have anywhere near the welcoming homeliness of the Dinghuis.

Sophie stepped off the cobbled street, dating back to 1100 AD, into the ultra-modern interior of a fourth telephone shop. Maastricht was the province of Limburg’s central city and provided the most up-to-date technology and fashionable products from all over Europe. A young man greeted her.

‘The shop on the corner told me that you can sell me a SIM to use just over the border.’ Her face looked expectant.

The man grimaced. ‘It’s still illegal for us to sell you a SIM that is local to your home in Belgium.’

‘It’s not making sense.’ The artery in Sophie’s temple pulsed. ‘So, are you saying that even though we have a receiver tower in the meadow below our house in Belgium, and Holland is on the other side of our canal, my tablet may not pick up WIFI as if I was still here in Holland?’

‘Next year they plan to remove the internet border, but the government is still working on how to do it.’

Sophie gaped at him. ‘We can walk across the border freely, but technology isn’t allowed? What on earth? Where can I cycle in Belgium to get the correct SIM card?’

‘Lanaken. It’s just ten minutes’ drive.’

Sophie moaned, ‘But I only have an old bike, and that extra twenty kilometres will flare up the pain in all my joints. It’s much too far for me to cycle over seventeen kilometres each way from my aunt’s place.’

‘You can catch the bus from the marketplace here.’

‘After two days of cycling, I’m much too tired. I’ve pushed my fibromyalgia far enough. I’ll go on Saturday. Bedankt voor alle helpen.’ She smiled. ‘Fijn dag.’

‘Je ook.’ He waved as she wheeled her trolley out of the store.

Sophie took the opportunity to rest her back in a demonstration swing chair while she checked her emails on free WIFI, before walking up to her bicycle to pack her trolley in a panier and strap the backpack on top.

As she cycled home through her favourite valley with the patchwork of various crops, she reflected on the irony of taking days to access technology which would allow her to stay at home for more days with her beloved aunt. Plus, I need to see my sisters’ emails about Mum and research more about Alida’s lifestyle before she was institutionalised.

She joined Bea for a cup of tea and related her wild goose chase via four shops for a SIM card.

‘I tell you, nothing is simple living on the frontier here.’ Bea thumped her forearms on the table with a slight laugh.

‘Well, do you mind doing something less confusing, and share some more of what you know about Alida?’

‘That’ll be fine.’ Bea folded her newspaper and put it on the carpet-covered coffee table.

‘Is it OK if I make a video so I can transcribe it as a conversation? I’ve been taught that this is a much more interesting way to relate a story.’

‘Of course. Then you won’t get confused and you can share it with your sisters.’

Sophie stood preparing the video. ‘It will be especially nice for Sara to have an experience of life here with you, just in case you aren’t here next year.’ As they turned back to the table, Sophie asked, ‘How old were you when you first met Alida?’

‘It was during the 1950s after I married her son and had children, so I was about twenty. I visited Alida in the place where your Opa put her.’ Bea leaned her chin on folded fingers for a few moments. ‘I often went alone, and when I did, Alida would describe what life was like before your grandfather had her locked up.’

‘What was she like?’

‘She was a real lady, always gracious, and not crazy at all. When my five children were grown up, I invited her to come live with her son and myself, and do you know what she said?’ For a moment Bea paused. ‘I have to make sure I say exactly what Alida said.’ Then she leaned forward, peering intently at Sophie. ‘She said, “Bea, I have been in this place for so long now, I wouldn’t know what to do with myself. I would be a burden on you. You just enjoy your lives now”.’

Bea slumped back in her chair, shoulders stooped. Her eyes met Sophie’s. ‘Now, they are not the words of a crazy woman, are they?’

‘Certainly not, and it shows what a selfless woman she was.’ Sophie felt as though her heart would burst. How helpless Bea must have felt about not being able to rescue her mother-in-law, despite her social work experience. This must be why she told this part of the story every time I’ve visited Holland. She followed Bea’s gaze out the window. Outside, geese screeched, doves c-cooed and small birds chirped, while butterflies fluttered around a carpet of flowers that ranged from yellow through to purple and white in the July sunshine.

‘You know, it’s so hard to imagine that Alida didn’t have the chance to live down here in Limburg where you and her children grew up, riding bikes through all this lovely countryside.’ Sophie looked as though she was about to cry. ‘To be confined inside for all those years is unbelievable.’

Bea bowed her head then looked at her niece with softness. ‘Mostly it isn’t beautiful weather, but it’s a wonderful place in which to live and I couldn’t bear to move.’ She winced. ‘My children understandably pressured me to do so this year with this leg injury confining me to bed for nearly four months. They had to travel hundreds of kilometres every few days to change with another to take care of me.’

‘I’d better let you have your nanna-nap, now; I’ll start my writing in the kitchen.’

Bea jumped up. ‘I am going to enjoy the sunshine and do some weeding in the garden first. There’s so much to catch up on since my injury.’

Sophie shook her head and smiled. ‘Don’t work for too long.’ But she knew better than to try to keep her aunt from her favourite pastime.

To learn more about Fibromyalgia, you could start at 

Visit our article on ‘PTSD & Chronic Pain or Fatigue conditions’ for further info

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TRE for Fibromyalgia & CFS on Facebook

The UK Daily Telgraph cites NHS estimates of 5% of the population suffer Fibromyalgia and Lady Gaga has raised the profile significantly. The story at this link is a young man’s story suffering Fibromyalgia from primary school age and contrasts the experiences of those able to afford the expensive treatments. Hopefully this chapter and links will help spread information about how people can alleviate a lot of pain and other symptoms 🙂