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.

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.

Yorkshire Day

One of the main things I’ve enjoyed since moving to the Dales has to be the food. In London, locally-grown produce is unsurprisingly in short supply – a quick trip to Spitalfields City Farm was our best bet.

Up here, though, we’ve been enjoying the proud dairy tradition, as well as growing our own produce. There’s an excellent farm shop in Skipton that pulls together a mixture of locally-grown fruit and veg, as well as providing an outlet for excess allotment produce to be sold. They also sell local meat and, where minced steak from the supermarket is a bland affair, making a burger from Keelham’s mince makes you completely reconsider how good it can taste.

As an old git in training, I was used to thinking that food always had more flavour when I was a child, and put it down to nostalgia and the rose-tinted specs of memory. Now, I’m more inclined to trust my memory and instead turn from supermarket meat to the better quality local meat from the farm shop, which is also very reasonably priced.

Lunch today was simple but full of flavour. Bright, peppery radishes, sumptuous figs, local vine tomatoes, and two Yorkshire cheeses: Wensleydale and a mild, citrussy sheep’s cheese, Yorkshire Fettle.

And as I sat there after, looking out over the garden, I realised there was nowhere I’d rather be. I will probably always sound like a southerner. But in Yorkshire I’ve found my home.

Raspberry and lemon roulade recipe

Delicious layers of meringue, creamy filling and raspberries combine to make a simple but indulgent dessert

One of the things we’ve been having to get to grips with recently has been having H on a low FODMAP diet, as advised by the GP. Even for someone as used to dealing with food intolerance and allergy as I have become, this one is a bit daunting. I suppose the big issue is that with a nut allergy, or gluten-free, or lactose intolerance, the substance you’re avoiding is relatively easy to spot in the ingredients and in most cases doesn’t lead to huge problems when creating meals without them. Not so with FODMAPs.

FODMAPs – Fermentable Oligo- Di- Mono- And Polysaccharides – are in lots of different things, and this can make having a varied diet difficult. One of the chief problems is with the allium family. No more onions. No more crushed garlic. The tender white part of spring onions and leeks? Nope. You can still have garlic-infused oil, or the green part of those spring onions and leeks, but since so many things contain onions and garlic, because they taste delicious, it has a big impact on eating out, buying stock cubes, the taste of so many favourite recipes, etc. And then fruit: no more stone fruit, no apples, no bananas unless they are speckle free, because the state of ripeness impacts the type of sugar in the fruit. And that’s just the start of it.

So you can imagine that trying to sort out a birthday cake for H was not as simple as it once was. In the end, we went less cake and more dessert, and kept things as simple as possible. The main objective was to give him something that was uncompromisingly delicious, and so we called on an old favourite, the roulade. H has a bit of a thing for lemon curd, but given the propensity of manufacturers to add fructose and other potentially problematic sugars, we went for home-made, which also meant we could use the egg yolks left over from the meringue.

The final curveball to negotiate was that this slightly fragile dessert was going to have to travel 35 minutes in the car on a warm day to the birthday party. Fortunately, Tesco have started selling a rather good lactose-free mascarpone, so instead of folding the lemon curd into whipped cream, I whipped cream and mascarpone together to make the filling stiffer and less prone to collapse, and gave the whole thing a couple of hours in the freezer for a little extra staying power, which meant it still looked – and tasted – as delicious on serving as it had in my kitchen.

I will at some point see what happens if you freeze it and serve it direct from freezing, because it seems logical that it would be a nice pseudo ice-cream.

Variations:

Naturally enough, this is a base recipe on which many variations are possible.

For example, Lakeland Artisan make a delicious Great Taste Award-winning chocolate orange curd that could be used in place of the lemon curd I used here, and you could swap the raspberries for blood orange segments, and pop a tablespoon or two of cocoa powder into the meringue.

Alternatively, passion fruit curd and mango pieces, lime curd and strawberries… there are many winning combinations you could use according to what’s seasonal or on offer. I’d love to see your versions in the comments if you make this at home 🙂

Yield: 10

Raspberry and Lemon Meringue Roulade

Raspberry and Lemon Meringue Roulade
The perfect indulgent dessert for coeliacs and people on a low FODMAP diet that leaves nobody feeling they're compromising.
Prep Time 15 minutes
Cook Time 18 minutes
Additional Time 10 minutes
Total Time 43 minutes

Ingredients

For the meringue:

  • 4 egg whites
  • 260g golden caster sugar
  • 30g flaked almonds, lightly toasted (optional)
  • 9 x 13 inch baking sheet, lined with baking parchment

For the filling:

  • 250ml Lactofree cream
  • 250g lactose-free mascarpone (ours came from Tesco)
  • 220g lemon curd (our recipe will follow as a separate post)
  • 200g raspberries

Instructions

  1. Preheat the oven to 200°C/180°C Fan/Gas 6
  2. Line the tray with the baking parchment - I use a dab of oil in the corners of the tray to anchor the paper
  3. Whisk the egg whites until they're stiff, but still smooth
  4. Start adding the sugar, spoonful by spoonful. You can use either a teaspoon or dessert spoon for this: the idea is to slow you down so the sugar gets properly incorporated before more is added. So with my arthritis, I use the larger spoon but add it slowly.
  5. When all the sugar has been mixed in and the mixture looks all glossy and is stiff enough to hold the pattern made by the whisk, you're ready to transfer it to the tray. This is a no-fuss operation: spoon it out over the parchment and spread evenly with the back of the spoon as you want it all the same thickness.
  6. If you're using the toasted almonds, sprinkle them evenly across the surface. We didn't to avoid nut allergy issues.
  7. Place the meringue in the oven - near the top if it's not a fan oven - and bake for 9 minutes to get the golden surface colour, then turn it down to 160°C/140°C Fan/Gas 3 for a further 9 minutes, so it's firm to the touch.
  8. Prepare a sheet of baking parchment while you're waiting and, when you take the meringue out, place the parchment over the top and, holding the parchment tight to the edge of the tray, flip it and place it parchment side down onto a cooling rack. Peel off the lining paper.meringue base for roulade
  9. Put the lemon curd and the mascarpone in a bowl and mix thoroughly
  10. Whisk the cream until stiff
  11. Add the curd and mascarpone mix a spoonful at a time until it's all incorporated. If you're not using a stand mixer and this feels like a faff, you can instead loosen the curd mix with a little of the whipped cream, and then fold it carefully together, trying not to knock the air out of the cream. You'll get a stiffer mix with whisking, which was what we wanted to make it easier to transport.
  12. Spread the resulting mixture over the meringue, leaving a 2 inch gap at one edge, which makes it easier to roll.meringue roulade ready to roll with cream topping and raspberries
  13. Scatter the raspberries (or strawberries, blueberries, etc) over the creamy filling until you're left with something like this:
  14. Starting from the long edge with the uncovered gap, gently roll your roulade. Once the first edge is carefully folded forward onto the filling, I find it easiest to use the baking parchment to help me keep it in shape and roll it evenly.

 

Notes

Low FODMAP, lactose-free, gluten-free, coeliac, wheat-free, vegetarian

Nutrition Information:

Yield:

10

Serving Size:

1

Amount Per Serving: Calories: 398 Total Fat: 26g Saturated Fat: 15g Trans Fat: 1g Unsaturated Fat: 9g Cholesterol: 92mg Sodium: 192mg Carbohydrates: 40g Fiber: 2g Sugar: 37g Protein: 5g
The nutritional values given here are an estimate and provided for guidance only.