Pale light

It’s Monday morning, and H has gone to school. Many parents would be on their way to work for the day, but I’m lucky enough to work from home. This is a precious time to me. The house is still, I can hear the birdsong outside, and Gwinny is draped in liquid feline fashion across my thighs, sharing warmth.

Unlike many, I have no aversion to Mondays. I may not like the early morning much, because getting out of bed is hard and needs me to be awake for more than an hour beforehand. But that peace from having the house to myself after a weekend of noise and bounce? It’s my time to breathe and set my objectives for the week, when I’m able.

Parked here on the sofa, gazing at the changing light of the sky in the late winter sunrise, I try to assess where on the scale I am with the fibromyalgia symptoms. Is this a working week? A bit of work or a lot? Unbearable pain and impenetrable brain fog, or a more gentle ache and a light mist?

I complete my daily check-in with the different parts of my body that can cause issues. This felt like a lot of effort the first few times I did it, but I’ve learned the hard way that it’s better to tune in and adapt my schedule accordingly than it is to charge headlong at what needs doing. I don’t help anyone if I use up a week’s energy in one day and then can’t work, cook, or more generally look after myself.

Last night I lay in bed with electric stabbing pains coursing up and down as I prayed for sleep. Today I’m sluggish and achy on the physical front, but my brain seems to function. I can string sentences together, managed to complete a sudoku puzzle, and was able to remember the contents of the BBC news bulletin ten minutes after, so today is a day for working and a welcome chance to catch up on some of the things I’ve been unable to do this year because the fibromyalgia has got in the way.

In a moment, I’ll get up and prepare my day. So much of this condition is about management and routine: if I can imprint onto my muscle memory that the day starts with making sure I have a drink and some fruit to hand, and that I’m located somewhere that will minimise the number of times I have to get up or go up and down stairs, I have some hope that on the bad days the habits are sufficiently ingrained that I don’t need to rely on my foggy brain but can instead do things on autopilot.

It’s a strange life, but it is mine. The sky in the window has become a pale, cement grey; the trees are still, with no wind to stir the dead leaves that failed to fall in the autumn. It’s tempting to take the view as a metaphor for my life, but I would reject that. The gentle play of the light as I watch is a reminder that time is passing, nothing more.

Gwinny gets up, stretches, blinks slowly at me before placing a cold, damp nose on my hand. I have my orders. And now my day begins.

So what’s fibromyalgia and why should I care?

When you share your diagnosis with someone, you can expect a range of reactions, depending on the condition. Cancer? Sympathy and sadness. Man flu? Derision. Inflammatory arthritis when you’re not obviously old? But you’re too young, but mostly, ouch, that sucks. Fibromyalgia, on the other hand, gets a whole range of its own, from “huh?” and “fibro-what?”, to “I knew someone with that, they were so lazy” and “oh, you mean hypochondria?” and “that’s just a name they made up to keep neurotic women happy.”

Very rarely, you get someone who actually has a clue, and whose response is “you poor thing, that’s awful. Let me know if you need anything when it’s flaring up.” And that kind of reaction might sometimes have me in tears, and other times wondering just how hard it might be for the rest of the human race to be that decent.

I’ll be honest, I underestimated what a chronic fatigue condition can do to people. Which is silly, when you consider how much of my upper sixth I lost to glandular fever. But it’s easy to forget how debilitating things can be, if you ever knew, and there are times I’m not proud of where I probably gave a less than sympathetic response to someone. If you’re one of them, I’m sorry.

So if you’re here because you put fibromyalgia into a search engine to find out what your friend or relative has, this one is for you.

What’s the worst thing about fibromyalgia?

That’s actually quite a tough one to answer. At times I would say, all of it. The pain is no fun, having no energy to look after yourself or your child, unable to do so much as read a book or watch a box set on Netflix? Also very little fun. Crashing and having your core temperature drop a couple of degrees because your body has so little strength it’s had to prioritise one key process like digestion over another key process like maintaining body temperature? Not a party, either. Knowing that if you draw on every last reserve you have you can do one thing, but that you’ll pay for it for days after? Yeah, that sucks, too. There’s other stuff, of course, but these are for me the worst bits, and the very worst of all is the being unable even to rest peacefully when you’re so far beyond exhaustion you’re practically in tears and you can’t sleep, can’t settle for the new and interesting ways your body makes you feel pain, and can’t concentrate enough to distract yourself.

OK, that sounds pretty grim. But you can take something for that?

If only. The thing is, once upon a time the doctors thought fibromyalgia was an auto-immune condition, which is one of the reasons that rheumatologist departments seem to make – anecdotally – most of the diagnoses. That’s how I was diagnosed: my OT said I should ask my rheumatologist about fibromyalgia, since I was due to see him in an hour. He asked if I minded him prodding me and then proceeded to make me scream when he palpated what I later discovered were the pressure points so common in fibro patients. That hurt. But he was pleased because, as he said, it was obvious, really, and he should have thought of it before. For a moment I had hope, because that sounded like there was hope of a treatment, but he soon cleared that up.

Fibromyalgia, it turns out, is a Central Nervous System disorder. By all accounts, they don’t know what causes it, and they don’t have a cure for it, and right now they don’t have any treatment for it, either. While there are some people who benefit from taking pregabalin, gabapentin or even amitriptyline, I react very badly to those drugs: suicidal ideation, hallucination, insomnia are all present, and it’s not like I sleep much anyway. It makes no sense to persist. So there we are, incurable and untreatable. If there were any clinical trials I’d be first to volunteer, because the hope of something to make my life normal again is too much to pass up. However, there are no clinical trials into fibromyalgia running local to me, and maybe not even elsewhere in the UK. Not that I’m in a fit state to go anywhere if there were.

So where do we go from here?

I wish I knew. In the past, even medical professionals needed some persuasion the condition exists. I can recall asking the neurologist I was seeing about my migraines whether fibromyalgia was a possibility, some time around 2008. He said someone with my psychiatric history – depression, as they thought at the time – would be unlikely to receive such a diagnosis. In other words, he thought it was all in my mind.

Most of the ‘treatment’ on offer is group therapy and CBT. It’s about learning to cope with the fact you’re stuck with it, not giving any real tools to reduce the impact of the condition on your daily life. I’d love for a meditation or some affirmations to actually work for me, I truly would. Who wouldn’t? But nothing I have tried has helped to date. My rheumatologist doesn’t sugar coat things. He doesn’t know of anything in the pipeline that will help. And that brings us back to the question in the title.

Why should I care about fibromyalgia?

The chances are high that you know at least one person with fibromyalgia, or CFS/ME, or Lyme disease, or PCOS, or something that has similar impact. The best thing you can do for that person is to try to understand. Be that one person who says “I get it, this is horrible. What do you need me to do?” And follow through. Whether you just offer to pop round and keep them company, or to help them tidy up a bit, or to get some shopping in, or just to give them a gentle hug and fetch them a cup of tea, understanding there is nothing they can be doing to change their circumstances and just accepting and loving them for who they are is the best gift you can give them. Life is hard enough without having to battle lazy stereotypes and ignorance. Having one or more people who understand is priceless.

You should care, because one day it could be you or a loved one. Because kindness costs nothing, and because being a dick takes so much more effort. Because doing something nice for someone who is beyond exhausted, in pain, and struggling just to exist might make you feel good about yourself, while making their day a little easier. And because that person is facing more battles every day than most people will ever realise. Be the friend you’d like to have if you were the one who had this, and believe them when they tell you what they’re going through. It’s little enough, but it can mean the world.

Lazy low FODMAP ginger biscuits

Picture of a white plate with a white mug of tea and a couple of spicy ginger biscuits or cookies, one of which has a bite taken out
Deliciously spicy ginger biscuits with a mug of Yorkshire tea: perfect dunked or crunched.

My fibromyalgia has been getting in the way a lot these last few weeks. It plays hell with lots of things, and for the last couple of weeks it’s meant parenting in survival mode while S is away on a business trip. I get up long enough to get H out of the door to school, then rest until he is home and needing dinner and parenting until bed time.

I’ve long since learned not to sweat the small stuff at these times. Granted, I’ve never had a fibro flare last quite this long before, and it’s enough to make this grown woman cry on occasion. It hurts, and I have no energy or strength. And while nobody will die if the house doesn’t get hoovered for a week or two and things get a bit untidy, when it reaches the point where I struggle to stand long enough to cook dinner, it’s a bigger issue. We’re no longer living somewhere we’re surrounded by take-away options, and while the village store has a really amazing range of things for village this small, what it doesn’t have is biscuits we can eat. And sometimes, dear reader, a biscuit – or a cookie, for my American readers – is very much what is called for. This is one such time.

H has a tendency to bemoan the lack of a biscuit option in the shops, because a lot of the gluten free ones you can buy in the shops contain things that are incompatible with a low FODMAP diet. Fortunately, these ginger biscuits hit the spot for a crumbly, satisfyingly spicy mouthful to dunk in a cup of Yorkshire tea, and they don’t require much work: just put the ingredients in the bowl of the stand mixer and let it do its thing then, like today, leave the dough to rest until a willing 12 year old comes home from school and can do the hard work of rolling and cutting the dough and putting things in the oven to bake.

Yield: 100

Spicy gluten free ginger biscuits

Spicy gluten free ginger biscuits
Spicy, GF and low FODMAP ginger biscuits: easy to make and a great way to get kids in the kitchen
Prep Time 10 minutes
Cook Time 20 minutes
Total Time 30 minutes

Ingredients

  • 450g plain GF flour (e.g. Doves Farm)
  • 210g caster sugar
  • 140g butter
  • 3g baking powder
  • 11g ground ginger
  • 10g ground cinnamon
  • 2g cayenne pepper
  • 1 large pinch of salt
  • 1 large free range egg
  • 95g maple syrup
  • 30ml cold water

Instructions

  1. Sift the flour, salt and spices into the bowl of your stand mixer (or a large mixing bowl if you're doing this by hand)
  2. Add the sugar and butter to the dry ingredients and start the mixer on a low speed, or rub the butter into the ingredients by hand until the mixture is a lightly crumbed texture
  3. With the mixer still on a low speed, add the egg and the maple syrup to the mixture and leave to mix. Depending on how thirsty the flour is - not all gluten free flours are created equal - you may need to add all of the 30ml of water to the mixture as well to achieve a stiff, even dough. As you've probably gathered, you can do this step by hand as well, but if I'm making these it's usually because I'm not feeling up to doing much, and the mixer wins. Every. Single. Time.
  4. Wrap the dough in cling film and leave in the fridge for an hour to rest.
  5. When you're ready to make the biscuits, preheat the oven to 180 C and sprinkle some flour over your work surface. Roll out a quarter of the dough on the surface until it's around 5mm thick. Using a 2 inch cutter, cut circles of the dough and place on an oven tray lined with baking parchment. Again, we're going low effort here, so it's worth spending the extra on siliconised parchment rather than greaseproof paper.
  6. Bake for 20 minutes, then leave for 5 minutes before transferring the biscuits to a cooling rack. Using a 2 inch cutter should get you 95-100 biscuits/cookies. The dough will happily keep for a day or two in the fridge if you want to split the baking. I've not tried freezing it for future use, but I suspect this would freeze fine.
  7. When the biscuits are cool, transfer to an airtight container, where they will last as long as your willpower dictates. Now you know why I've not tried freezing the dough yet!

Notes

Suitable for the following diets: gluten free, lactose free, low FODMAP, vegetarian

These are also excellent when crushed and used as the base to a baked cheesecake.

Nutrition Information:

Yield:

25

Serving Size:

4

Amount Per Serving: Calories: 163 Total Fat: 6g Saturated Fat: 3g Trans Fat: 0g Unsaturated Fat: 2g Cholesterol: 25mg Sodium: 61mg Carbohydrates: 25g Fiber: 1g Sugar: 11g Protein: 3g
The nutritional values given here are an estimate and provided for guidance only.

Just when I thought I couldn’t love Yorkshire more…

…autumn happened. As the months have gone by up here, I hadn’t become immune to the beauty of the place, but I had become accustomed to the stunning landscape that surrounds us. Every now and then, I’d have to stop the car to appreciate how the hills looked in a certain light, or when there was mist, or indeed any other variable that might make me look again, but I’d at least reached the point where I could drive without distraction from the view.

So I was perhaps a little complacent about it as we moved almost overnight from summer into autumn. There had been little hints as some leaves yellowed, but then suddenly autumn was there, in my face, jumping up and down like a toddler who needs you to look right now at what they drew. It’s just that the results here were a little more spectacular (I’m still trying to forget the time S let H play with a bag of flour while I was working, so that doesn’t count.)

I could write pages and pages about autumn. It’s my favourite season, where the prospect of being able to light the fire and choose how warm I get is available, instead of wondering how on earth I can cool down. Everything is colourful and pretty: a bit like London Fashion Week for the tree community, where each tree tries to outdo the next for sheer colour and style. I get to make stews again, and soups are suddenly deeply appealing and one of the best perks of working from home. An occasional slice of cake feels permissible to ward against the cold, and fruit tea replaces cordial as my daytime tipple.

Despite all that, and all the muttering about how autumn couldn’t come soon enough during the heatwave even Yorkshire saw this year, it felt very much like it had snuck up on me, waiting to flip the light switch and yell “Surprise!” I was driving down the valley towards Grassington and suddenly it felt like a different place. I realised I’d slowed down to something like ten miles per hour as I looked at the trees and the hills and tried to take it all in, eventually conceding and pulling in to a lay by in order to just get out of the car, breathe, and look. Nature one, Melanie nil.

It’s hard to believe we’ve been here nine months. There is no doubt that we chose to come here, but I would never have believed we would feel so strongly that we belonged in such a short space of time. It’s no longer an experiment but a choice, one made all the easier by new friends and kind neighbours who have welcomed us all into our new community. At today’s Christmas craft fair in the village hall, I went in and recognised – and knew by name – the first three adults and both children we met and greeted and chatted to others as we continued around the stalls.

Kettlewell is a special place, and its people are creative, imaginative and entrepreneurial. They’re also supportive of each other and of our shared home, determined to prevent a rural community withering away. We’ve come home with a Christmas card holder craft project sold by Caroline in her Giggle Squiggle craft shop under the village shop, all set for H to decorate it and create part of our new family Christmas tradition. We also bought some Christmas cards made in the village by Laura, who also sews lovely things for sale. A crocheted bookmark from another stall so that I can spare my books, now I’ve started reading again. And H’s choice of one of the cat collars made by Rhona, that he felt eminently appropriate for our no-longer-so-feral Gwinny.

Other stalls carried ceramic items, home-made hair bows, home-made blankets and other wonderful things, as well as the usual excellent range of home-made cakes at the refreshment stall. Home-made everything, with skill and care in every item. As we wandered home, H suggested I should start planning my own stall for next year, that I dig out my beading materials and play.

This makes me pause, and I realise I’m looking for an excuse even before I’ve considered it: too little time, no energy, not creative enough, no brain space to be creative… all the traditional reasons why I would rule something out without further thought. I stop myself, because this has been a year where I’ve had to be open to new things, to doing things differently for fear of always making the same mistakes. Fail better, that’s the thing, and it’s served me well. I have a year until the next one and no idea what will happen in that time. And so the afternoon ends on a maybe: it’s perfect.