Fibromyalgia UK Magazine

Fibromyalgia – Riding the bumpy road to acceptance

As featured in the June 2017 Edition of Fibromyalgia UK Magazine

I’d been waiting what felt like a lifetime to find out what was wrong. I’d been poked, and prodded by numerous professionals, had to explain my symptoms what felt like a thousand times, and each time the doctor thought they had cracked it. Then results came back negative and they were just as stumped as before, what was wrong with me? After going through this cycle a number of times, I finally reached a diagnosis of Fibromyalgia, then what?

I went to my diagnosis appointment, like all of my appointments, alone. I went hopeful of an answer, so that I could begin to get better, to take action to battle against the pain and fatigue, yet when I got that answer, I didn’t reach the climax of relief I thought I would. Instead, I was scared, lonely, and confused. It was like somebody had pulled the plug on my future, my career, and my whole being, I felt like I had been sentenced for a crime I didn’t commit. Being on my own made my head go into a complete spin, and I’m not even sure how I got home. What I do know is that when I did the hopelessness flooded out of me like a tidal wave and I was in more pain and more fatigued than ever. The diagnosis rollercoaster was about to begin.


I spent the first part of the ride figuring out what to do. The process I followed could be likened to grief, I even doubted that the doctors had got the diagnosis right at all, which is a classic denial symptom. I longed for the person I used to be, I felt like I had lost all my identity, and that I would never regain it. Anger and denial came hand in hand for me.


I had already discussed with my rheumatology consultant my wish to treat the fibromyalgia as naturally as possible, I’m not somebody who likes to take paracetamol, let alone any serious medications. I had agreed that I wouldn’t rule out taking medication, but for now I wanted to start gently and work my way up, working holistically with my body, and seeing how I got on. Was this too much to ask? When I said this it became quite clear that this was a path that I was going to have to pursue on my own, after all, holistic naturopathic care is not something the NHS currently, nor in the near future will provide. I asked if there was anything at all that could be done and made suggestions on how they could help me, knowing full well the answer would be no as the services simply aren’t available. I bargained hard but bargained with the wrong people. A few days later I even emailed my rhuematologist with some suggestions for further tests to rule out other possible conditions that had a more robust treatment plan, desperation and bargaining at its worst.

I felt that I had to be proactive. I had to use the pain and the desperate need to not be defined by the Fibromyalgia to my benefit. The first thing I did was to do A LOT of research into exactly what fibromyalgia is believed to be, and the evidence that can be used to base my treatment on. Was the research reliable, and had other people, those with Fibromyalgia symptoms similar to mine found benefit? The information available was overwhelming, I spent far too much time doing this and it made me focus negatively on my diagnosis, which was not the best, both physically and emotionally, I was drained. I enter a depressive state, I felt like I would never get better, that nobody could help me and feared that I would lose my job.

Then I began speaking to others who live with fibromyalgia about their symptoms on social media sites and forums and soon realised that while no one fibromyalgia warrior is the same, we do all have one goal – an urge to get better and to live our lives to the fullest extent possible. This will look different for each one of us, but on the whole we all have the same aim in mind. To do this we all need different treatment regimes, some with minimal medical support and some with very heavy medical support. There is no treatment plan that fits everybody and so to find out what works for you, you need to try a number of techniques, one at a time and find out which ones work and which don’t.


This was the point where I accepted my diagnosis and I began to feel more positive and hopeful. I need to stress that this cycle of grief, denial, anger, bargaining and depression, took place over an incredibly intense period of time that only lasted about 2 weeks, but was tiring. However, it takes time for the heart to accept what the mind already knows.

As I accepted my diagnosis, I started to become honest with people that I knew about my diagnosis, not to gain sympathy, but so that they could begin to understand why I wasn’t quite my old self. When you share, news very quickly spreads, like a wildfire actually, but while some may perceive this to be gossip, I found it very useful. Why? Many people, as a result of hearing my news, shared their own stories with me, or knew somebody with fibromyalgia that I could speak to, living with the beast that could relate to me. There were also a number of people, who upon hearing my news would offer up their skills and expertise, or those of a relative or friend, to help me on my journey. This is the point when I no longer felt alone and the positivity flowed throughout me, I finally felt that maybe, one day, I would be a new sort of ‘well’. Optimism was now a word in my vocabulary again, which was difficult to find in the wake of a fresh diagnosis, when things were scary, uncertain and I lacked control. Without the support of my peers I would never have reached this point.


So here I am today, flitting somewhere between buoyancy on some days and frustration on others, and thats ok. People will tell you to be positive, upbeat, and that everything happens for a reason, but that doesn’t mean that you have to be excessively happy. For me part of having a chronic illness is learning to deal with the rollercoaster of emotions that comes with it, riding the waves if you will. Along with simply going through the motions, part of accepting a chronic illness is being able to articulate just how terrible somedays are to family and friends, without the fear of judgement. Being falsely happy all of the time, for me, is actually somewhere close to denial of the beast that lives inside you, and while you remain in denial there is no way of moving on. My loved ones now know that while on the whole, most days, I can be positive and bright, there are the occasional days when I just need the fibromyalgia to be acknowledged and take a step back to get myself back on track. What is important is that I don’t allow myself to wallow in a cycle of negativity, by being mindful and acknowledging my symptoms but then being hopeful that this shall pass and a good day will come again.

I hope you enjoyed this article and found it helpful. If you would like more information about how to get help with a fibromyalgia diagnosis then please do give me a shout either in the comments below or on Instagram, Facebook and Twitter.

Toodle pip! 

 

 

Sleep Hygiene

The Fibromyalgia Sleep Chronicles #8 – Post Sleep Routines

In the last instalment of The Fibromyalgia Sleep Chronicles we looked at how pre sleep routines can help you to better drift off to the land of nod without too much reliance on the sandman, but have you ever thought about your post sleep routines?

alarm-clock-2132264_1920

If you are anything like I was at the beginning of the year, your phone will wake you up with its pre set alarm, and through bleary eyes you will take at look at any notifications that have come through while you have been sleeping (or attempting to sleep). One of them is bound to excite you and warrant a closer look by logging into your phones screen and seeing what is happening either on social media or in the news. Occasionally this may lead to happiness but more often than not it leads to a buzz of activity in your brain leaving you feeling over excited, stressed, or worried. You may find yourself getting caught up in what you see and before you know it you haven’t got time to have a nice long shower or even worse, to eat breakfast.

I’ve learnt that that is how I used to be, and I now shudder at how tied I used to be to checking my phone as soon as I awoke. I used to wake up and be immediately sucked into life outside of what I could control, or even thing I didn’t need to know first thing in the morning. My attention needed to be on getting myself up and ready for the day, my children, and my wellbeing.

barley-field-1684052_1920

I now look at waking up as ‘warming up’, getting myself ready for the workout of a day I have ahead. I guess my post sleep routines are my cool down, from the workout of a day I’ve had. By warming up to my day I am able to gentle move my body from a sleep state to a fully alert and awake state, and this helps me to tackle my day, head on, positively. I generally allow myself at least an hour for this, and this hour needs to be before I am responsible for anything or anyone. So I’m generally up and about before my children wake up at 7 for at least an hour.

Stay away from the light!

It’s not just about being awake for an hour before the kids get up. It about what I do with that hour thats important. Like I’ve already said, being awake and sitting on my phone for an hour is not the best start to the day.

Using a phone, or any technology, in that first hour of waking up, does not allow me to process my thoughts very well. My brain is not thinking 100% clearly or rationally, and therefore staying away from anything that might warrant a negative response or that might worry me is generally the best thing for me. It’s a bit like responding to a text when you are blind drunk. I know I certainly feel drunk when I’ve just woken up! Rarely do I jump out of bed full of the joys of spring (see this post as to why!).

Eat Breakfast

There’s a reason why they say breakfast is the most important meal of the day…. because it just is! If your evening meal was at 7pm and you wake up at 7am, then your body has literally gone 12hours without food. You need to refuel. Without eating breakfast you simply will not have to energy to start your day off positively. You’ll likely make bad food choices throughout the day, drink more caffeine than you actually need, and this could have a negative impact on your sleep the next night. So ALWAYS eat breakfast. If you find eating breakfast difficult then don’t make it the first thing you do when you wake up, but rather leave it towards the end of your post sleep routine. Keep it small, maybe a light yoghurt, a smoothie, or a slice of toast. Once you start doing it you will gradually have a bigger appetite on waking and be able to plump for bigger and more energising breakfasts as time goes by. If you follow me on Instagram, you will know that breakfast is by far my favourite meal of the day, and breakfast generally doesn’t have many rules!

img_1634

Exercise

I exercise pretty much every day as part of my post sleep routine, usually yoga, to wake up my body gently, and to stretch out all those fibromyalgia aches and pains. I usually exercise before breakfast, but after I’ve had a drink. Exercise in the daylight is all the better if you can manage it (see this post for the benefits of daylight on sleep and wellbeing). I generally do my yoga in my bedroom where the sun shines in, in the morning, but only because I’m too embarrassed to do my yoga in the communal garden! But if you are a confident yogi, do it on the grass! I also go for a walk every morning, whether it be taking the kids to school or walking to work.

Challenge your brain….. gently

My engagement with the world usually begins right at the end of my post sleep routine. I will put on the radio to listen to the days news (after my breakfast, exercise and shower when I am fully awake and won’t get to drunkily emosh about it), or maybe listen to a podcast on my way to work. Anything to get the brain thinking. I also make sure that I make my bed, wash up the breakfast things, and get the girls things ready for school (with mixed success…. I usually forget something!).

So in short my morning generally looks like this….

  • Wake up at 6am
  • Have a cup of herbal tea and practise mindfulness (mindfulness is a great way to awaken your senses to the day!)
  • Yoga
  • Shower, dress, hair, make up
  • Breakfast with the kids
  • Wash up breakfast things while kids get themselves ready for school, listen to the radio or a podcast
  • Get things together for work/school
  • Walk children to school
  • Catch train to work, USE PHONE!!!
  • Walk to work from train station, listen to music

By the time I have done all of the above it already feels like I have done a lot with my day and made the most of my time, My day is gentle, my morning relaxed and usually stress free, which gets me off to a great start. I generally feel able to tackle anything life throws at me in a calm and collected way, and feel like an all round hero 🙂

So thats it! Do you have any post sleep routines that your use that you would like to share? If so then as always I would love to hear from you, either on Instagram, Facebook, or Twitter! Please also feel free to comment below!

Toodle Pip!

Naturopathic Nutrition

Fibromyalgia and Diet – alighting the sugar train.

No fancy blog post today. Just my latest challenge. I’ll keep it short and sweet!

Diet can be one the hardest things to maintain in any health regime. We are constantly surrounded by adverts, restaurants, smells, and invites to dinner. And with so much deliciousness around us it can feel nigh on impossible to resist.

I like to think that I’ve taken on the gluten and dairy free challenge quite well. Yes, I have the occasional blip, maybe once a month, for one meal, but thats not bad. Yes, I think on the whole I deserve a big shiny gold medal for my non complaining efforts. Thank you.

I do have one food nemesis though that is proving harder to conquer since I was told to cut it out at my last nutrition assessment. SUGAR.

I love sugar. I love the taste, the variety and the high. I don’t like the slump, exacerbated fibromyalgia fatigue and fog though. I’ve fooled myself into thinking that as I have cut out caffeine, sweeteners, artificial additives, gluten, dairy and alcohol that its ok to have sugar, everyone has to have something right? WRONG. I really do need to cut out the sugar. We all know sugar is bad for us in large quantities, and I’m not that bad, but cutting it out almost completely, argh. The thought of that makes me sad.

The problem I have now that I am competing daily with a chronic illness, is that this is no longer a choice but a necessity. OK, the amount of sugar I have won’t kill me, but I know for a fact that sugar makes my fibromyalgia symptoms a whole lot more difficult to deal with. By giving in to my urges I am making myself feel worse and then kicking myself when I didn’t have the willpower to say no. JUST SAY NO SARAH!

So I’m compromising. I’m cutting out sugar a bit at a time over the next two weeks, so I don’t get a banging 3 day headache, and I’m cutting myself some slack, sometimes.

Like any good diet change, I’m starting tomorrow. Too many jelly beans today.

So here’s the rules. If its been a looooooong day at work, I’ve eaten well, done my exercise and hydrated myself enough with water, I will allow myself a can of pop made with natural products. At the weekends, if I want to bake for the family. I’ll allow myself a slice of cake. If we go for a meal, I’ll allow myself a pudding. This way I can still satisfy my sweet tooth, but without quite as much guilt, and I know that the next sugar rush is never too far away (I mean, I love baking and given the chance I will, and there is a long day at work at least once a week!). The main rule is not to have ‘just a little bit’ every day, a little bit can be hard to stop at.

I’m going to attempt to share with you all my tricks for beating the cravings, most of which I will learn along the way. For now, just wish me luck. I’m going to need it!

If you have any tips for me PLEEEEEASE leave them below! Or if you would like to join me in my journey then give me a wave over on Instagram, Facebook or Twitter. I promise I don’t bite (unless you are a jelly baby of course).

 

Naturopathic Nutrition

My Fibromyalgia Week and Diet – Whoops

Hullo all!

Its been a lovely week away on holiday with my wonderful little family 🙂 A week full of fun, laughter, food, sunshine, sand, sea and (unfortunately) pain. That being said, the pain hasn’t been so bad that it has beaten me, and I’m hoping that it didn’t stop me from doing things that were good for the whole family. The holiday was relaxing in equal measure with fun, and I feel proud of what I was able to achieve. I did have 2 days of really quite high levels of pain, but I kept going with my tried and tested techniques which helped a great deal.

Now for a naughty confession. The first 5 days out of the 7 were really really great on the food front. I was able to find many gluten and dairy free delights, of which lots of them were also local to the area we were holidaying, which is also important to me. However, theres always a but……..

Come the penultimate day, I caved in. I was really hungry, and fed up of often having to go without because there was no option for me. I caved into some really lovely food, that tasted incredible, but by golly did I pay…. Headaches, bloating, pain, fatigue, and generally just ergh. Was it worth it? Well, the taste was worth it and I don’t regret it that much, so yes I guess it was!

That doesn’t mean I wasn’t glad to get home and get back to normal with food preparation and habits. Having everything I need to hand is really important in maintaining my diet and therefore controlling some of my most bothersome symptoms. I’m pleased to report that the headaches have eased with just a nagging little frontal headache tonight, the bloating is dissipating slowly, and the pain is ebbing back towards that widespread mundane nagging pain that lingers in the background that I am accustomed to, as opposed to the more acute pain I had on holiday.

Sleeping in my own bed last night also helped a great deal and I slept right through, which I hadn’t done in quite a while. I used to be able to sleep well anywhere, but this isn’t the case anymore, although I was able to drop off fairly quickly in the evenings which was an improvement on the previous holiday.

Now to share with you my foodie adventures from the last 2 weeks since I last posted. Enjoy!

Roskillys farm dairy free coconut ice cream!
Roskillys sorbet – how amazing do these alcoholic sorbets look?! What I wouldn’t give for a mojito one now!
A visit to Trebah Garden is never complete without some amazing homemade cake. I used to have the cream tea but that was off due to my diet changes. Was so happy to find this Dairy Free and Gluten Free orange and almond cake!
Yes, Roskillys did well out of me last week, what of it?! This mango and passionfruit Sorbet was amazing. Who said you can’t enjoy food when you and gluten and dairy free?!
The beautiful Rick Stein Porthleven Restaurant in Cornwall. Plenty of gluten and dairy free options!
I thought I would never eat fish and chips again, but Rick Stein had this offering suitable for my and it was 👌🏻
This was a very much chucked together dish but it looked so pretty and tasted so good that I actually shared it as my latest recipe on the blog! Go check it out!

That’s it from me for today 🙂 I hope you enjoyed drooling over this weeks food! As ever you can find me over on Instagram, Facebook and Twitter, where I was quiet last week but now I’m back from holibobs will be back in action 🙂 I hope you all have a fabulous week! 

Recipes

Recipe – Pan fried mackerel with green beans, beetroot and a fried egg

Nothing quite screams summer like fresh fish, and vegetables from the allotment, such as green beans and beetroot. This year has been quite a fruitful year on the allotment (if you excuse the pun), and it is at this time of the year that we try our best to incorporate what we grow into quick and easy meals.

Mackerel is cheap, quick and easy to cook, and tastes delicious, not to mention it is incredibly good for you as part of an anti inflammatory diet, and I try to eat at least 3 portions of oily fish a week. I personally love the saltiness of smoked mackerel, but un smoked will do just as nicely. As would trout or salmon. We used the green beans not to specifically pair with the fish but just because this is what we had harvested just the day before, along with a shed load of beetroot. The egg? Well, who doesn’t love a fried egg?

This is possibly one of the tastiest yet easiest meals you can plate up this summer, and if you are like me thats perfect, as I hate cooking over a hot stove for too long in the heat!


Pan fried mackerel with green beans, beetroot and a fried egg

Ingredients – Serves 2

  • 1 teaspoon of olive oil
  • 2 fillets of mackerel or other oily fish
  • A good fistful of green beans, sliced to you preference
  • Half a large beetroot, grated or sliced thinly
  • 2 eggs
  • Salt and pepper

You will also need a large frying pan and a saucepan/steamer

Method

  1. Bring a large saucepan of water to the boil and add the green beans and cook for 8-10 minutes until just soft, but still with a bit of a bite, and still bright green, or steam to the same effect
  2. Meanwhile, heat the olive oil in the large frying pan over a medium heat, add the mackerel, skin side down and cook for 3-4 minutes, until the skin is golden and crispy. Then flip over and cook for a further 3-4 minutes until cooked through.
  3. When the beans are cooked drain and pop onto your plate, sprinkling over the grated/sliced beetroot and a good pinch of salt and pepper to your taste. Place the cooked mackerel on top.
  4. Place the frying pan back on the heat and add more oil if needed to fry your eggs. Fry to taste and pop on the top of the mackerel.
  5. Voila! Bon Appetit!


For more gluten and dairy free, and anti inflammatory food ideas, don’t forget to follow me on Instagram, Twitter, or Facebook, or even all three!

Toodle Pip!

Sleep Hygiene

The Fibromyalgia Sleep Chronicles #7 – Pre sleep routines

What is your pre sleep routine? Answering all those emails you didn’t get time to answer at work today? Watching the TV until you fall asleep on the sofa and then wake up in the small hours, trying to work out what that nonsense is that’s now on air? Getting in from work late and stumbling immediately into bed? If it is any of these things, then you should probably re think how you are preparing your body for sleep.


Getting a good nights sleep is essential if you are going to manage your fibromyalgia as best as you can. The first step to a good nights sleep is making sure that you have a quiet, dark, cool environment to sleep in, free of distraction and things that can potentially wake you. I wrote a post about this in March and I thoroughly recommend you read it before carrying on with this post 🙂 You can find the post here.

Once your environment is sleep friendly, you can then move on to what you do before you go to bed. Everybody’s pre sleep routine is different, but there are some basic things that I definitely recommend incorporating into your routine, and I’d like to share with you what I do. Also, when you start your routine is up to you but I recommend about 60-90 minutes before you plan to drift away to the land of nod. Also the time you will start your routine will be different each night, as you may have been for drinks with friends, or there maybe that final episode of your favourite TV programme that you just have to watch.

The first thing I do in my pre sleep routine is move myself away from blue light, which we have already discussed the pro’s and con’s of in a previous post. The reason for this is that the closer to sleep time I use blue light, generally the longer it takes me to switch off and drift off to sleep. It’s not just the blue light per se, but also the extra stimulation it can bring with it, such as bad news of an incident somewhere, or that email that comes in right before I need to go to sleep that I am thinking about and cannot possibly leave until morning to answer (and then find myself waiting for a reply that doesn’t come!). The easiest way around this is to simply ‘switch off’ which includes TV, computers and mobile phones. This way I have a good 60-90 minutes to process the last piece of information I had while using blue light and hopefully I will be at peace with whatever this is, which means I will find it much easier to go to sleep.

Equally, on the subject of blue light, I also start to shut out daylight which is a big source of blue light, to tell my body that it is time to start winding down. We have heavy lined curtains in every room in our flat so this is easy. We then tend to do things by candle lights or by dimmer light, to get the melatonin flowing, and to make the mind and body feel sleepy. Also, tooth brushing by candlelight is far more romantic than under the harsh light in the bathroom!

The beginning of my bedtime routine is also the time I am thinking about having m last caffeinated drink, if I am going to have one (which is hardly every these days). I don’t want that late cup of tea to keep me awake.

Next I move onto thinking about what I have on the next day. If I am working I generally try to sort out my lunch (which I’ve been terrible at recently) as well as getting the kids bags packed for school and uniforms ready. Do not underestimate the difference this makes to my day. I write a list of all those things I ABSOLUTELY MUSN’T FORGET on the notepad that sits on my bedside table. This tends to happen gradually as the evening goes on and as things pop into my head. By jotting them down I won’t be keeping myself awake telling myself that I musn’t forget. Some days the list is bigger than others!

I usually tend to potter around in this time too, maybe doing the washing up so I don’t have to face it in the morning, with some gentle music in my ears, or loading the washing machine ready to go in the morning. The key is to keep it mundane, the more simple and quite frankly boring the task, the better!

When I have either finished everything there is to do, or simply can’t be bothered to do anymore (which is dependant on the type of day I have had), I then think about getting ready to actually go to bed. I take off my make up, brush my teeth, have one last small drink of water, and go to the toilet, so that I don’t have to pee in the night.

Then it is into bed, and depending on how tired I feel, how much time I have or what kind of day I have had, I may do some mindfulness to de stress, do some reading (but not crime or horror!), or ask my husband to give me a massage if my pain is particularly bad.

By the time I have done all of this, I am generally very sleepy and finding it really hard to even keep my eyes open, in fact I often fall asleep during my mindfulness. I may be reading and the words become blurry because I am on the cusp of falling to sleep. This is the time, to seize the opportunity, to close my eyes and (hopefully) have sweet dreams.

I hope you have found this post useful, please do share your tips for settling down for a good nights sleep in the comments below, or over on Instagram, Twitter or Facebook, I would love to hear from you!


 

Naturopathic Nutrition

My Fibromyalgia Week

Oh dear readers, how I have missed you and how I have missed writing! I’m sorry I have been AWOL.

I have finally got it sorted in my head how I am going to blog more regularly without it impacting on my well being too much, and without putting too much pressure on myself. There are many reasons why I haven’t been blogging, or even on social media much but the main reason is that I just haven’t had the best handle on working full time, being a mummy, keeping active, keeping up my regimes and having a chronic illness, along with keeping the smile on my face. I keep reminding myself that in this long long chronic illness game I am still in the very early days of learning, growing and thriving.

That being said I am learning. Slowly, but still learning. I have also still been writing, for magazines and other blogs. Keep your eyes peeled for me sharing the articles soon 🙂 but I have missed the blog and the satisfaction it brings to be able to share my journey and be mindful of my experience, and so this means I need to get back on track.

So in the spirit of trying to return to ‘business as usual’, Mondays wouldn’t quite be right if I didn’t share with you some of my gluten and dairy free food adventures, so here goes!

IMG_2082
These look so naughty but are oh so nice. Made by a local bakehouse from the train station I use, so supporting local business too!

IMG_2080
I think I may have a slight obsession with designing my porridge bowls…… Kept it simple here with banana and almonds on top of coconut porridge… total yum!
 

Like I said, slight obsession, only this time with strawberries, pistachios, sunflower seeds and maybe a little too much honey!

I’ve broadened my breakfast repertoire to smoothies! This one is by far my favourite, mango, strawberry and banana with coconut milk.

img_2107
While this one won the prize for the best colour! Banana and Raspberry smoothie with almond milk

You’d be forgiven for thinking that this is cream of tomato soup and that I have completely thrown my dairy free diet out of the window! It’s is actually tomato soup with some ground almonds mixed in which made this soup creamy, sweet and utterly delicious!
I do share my food adventure frequently on Instagram, as well as on Twitter and Facebook, where I also share fibromyalgia and chronic illness articles of interests and recent research. So come join me on this journey and lets thrive together!

Lastly, a little quote from my Calm App that I use for mindfulness, a little bit of wisdom from the really quite wise Dalai Lama, that helped me get back on track today.