Fibromyalgia can be difficult to explain, and even more difficult for people to understand, but this doesn’t mean you have to suffer in silence.
You may be reading this as somebody who is wondering if they have fibromyalgia, or maybe, like me, you’ve just been recently diagnosed, after a long time of feeling truly terrible and wondering what on earth happens next. Perhaps you have known for some time now that you have fibromyalgia but those around you don’t quite get it. You could even be a close friend or relative of a fibromyalgia warrior who just wants to try and comprehend what all this means.
Its hard to explain to somebody who has never experienced a chronic condition quite what it means to be plagued every single day by pain, or extreme fatigue, especially when you look fine on the outside. Sometimes it feels safer not to tell people how you are feeling because of the fear that although they hear the words you are saying they just cannot understand, or perhaps you just cannot even begin to find the words to explain to somebody how you are feeling, how your body feels like it is breaking down and how weary you have become.
If you are just beginning to wonder if you have fibromyalgia, please, don’t suffer in silence, begin your journey to understanding your pain and fatigue by going to the doctor. If you don’t like the first opinion, or feel dismissed, then seek a second opinion. You could have been suffering for years, and just getting on with it, but I live by one of my favourite quotes by Albert Einstien “Insanity is doing the same thing over and over again and expecting different results”, so why not go to the doctor and see where it may lead? If you find it difficult to get across how you are feeling then book a double appointment, chances are once you start talking you won’t be able to stop.
If you have just been diagnosed, then explain to people your diagnosis as best as you can. Especially to those close to you. Fibromyalgia can be a solemn lonely journey if you do not share it. You don’t have to tell the world, just somebody, anybody, who will help you. There is no shame is asking for help. Don’t keep your suffering inside in the fear of it destroying those around you, because ultimately you could end up destroying yourself.
For those of you who will be told by your loved one that they have had this diagnosis, remember, it is not your job to understand the journey they have taken, after all, it is not your journey but theirs. It is simply your job to say ‘I believe you, how can I help you?’.
Lastly, if you have been suffering with fibromyalgia for many years, don’t just survive, live. Your head may tell you that some days appear impossible, others risky, based on previous experiences, or maybe even pointless, but open your heart and face your fears head on, preferably with somebody you trust. Tell them that you are scared, and let them help you to let go of your fear instead of suffering the familiar. You never know, with the right support, you may well surprise yourself.
I have been lucky enough to have been offered the opportunity to write regularly for Fibromyalgia Magazine, a UK based magazine that offers worldwide support to Fibromyalgia warriors. Please click the link at the top of this maple to access this and more wonderful articles!
Welcome back to another instalment of the fibromyalgia sleep chronicles. I will get back to business on sleeping tips in the coming weeks, but for today there is something more personal that I wanted to share with you about my sleep and how I cope when it doesn’t quite go how we all dream it would (excuse the pun).
If you have read the previous posts in this series then you will be familiar with my slight obsession with good sleep hygiene and habits in order to improve sleep (if you haven’t read them then I recommend you start with this post when you have finished reading what I have to share today).
However, my obsession with these habits isn’t just a phase, nor an unhealthy obsession. It is my personal recipe for getting things right. Not only practising these techniques, but also understanding why you should employ them, helps you to have a better relationship with sleep, and also not panic when things don’t go right. I’d also like to add that you don’t have to suffer with fibromyalgia to benefit from these techniques, you just need to be someone who would like to sleep better.
My sleep today, without boasting, is a thousand times better than it was 6 months ago, and treating my sleep like the third element of health, along with diet and exercise, has benefitted me enormously. This does mean that I am very quiet and boring of an evening (but this suits my better half as he has early starts so no problem there) and it doesn’t mean that I always get it right, and that I sleep soundly and deeply every night.
Life gets in the way. Children wake up in the night feeling unwell or after a bad dream. I get sick. God forbid I have an alcoholic drink. That’s right, things aren’t all rosy and it isn’t always a good night for me.
Take for example these last few days. Friday morning I woke up with back/loin pain, but put it down to a change of role at work which entailed more sitting than usual. I took in my hot water bottle, made myself move around a little more and thought I would get better. Friday night I slept dreadfully. Saturday also dreadful (partly down to having some rum, don’t judge), and by Sunday I realised that the back pain wasn’t because of my job but because I was developing a nasty kidney infection (which is now being treated). Pair this with a child that then woke up on Sunday night and by Monday I was more tired than when I finished work on Friday. This morning, I had to pretty much winch myself out of bed.
What I haven’t done however is give up hope of a good nights sleep, and I absolutely haven’t stopped practising the tried and tested techniques that I know work so well for me. I haven’t judged this blip and thought to myself “I don’t know why I bother because nothing works”, or “I’m too tired to do that tonight”. Instead I have carried on.
But how do you carry on? Well, its difficult and takes a lot of willpower that I know you all have. When all you want to do come morning is lay in bed, I urge you to absolutely get up and continue you day as much as you can, without making yourself more ill. Take a hard look at what could be the trigger for sleep eluding you at that moment and do all you can to remedy it. What has changed? Can you make it better? If you can, do so immediately. Most importantly you have to continue doing what you know works so well and keep up the good habits. By doing this, given time, it will start to improve again and today will soon be a distant memory.
Another key aspect to any ‘bumps in the road’ is acceptance. 6 months ago I used to get up and tell myself what a terrible night I had spent in the sack. I would tell everybody about it, and blame everything that went wrong that day on how poorly I had slept. I would flop into bed the following night EXPECTING to sleep badly again, and so I did.
Today I got up and thought to myself “well that was crap” and then I moved on. I didn’t allow it to invade my day, and I didn’t give it the airtime it doesn’t deserve. I wouldn’t say I ignored it as such, but I acknowledged the poor sleep, had a think about why it happened and I took proactive steps to remedy that problem, in the confidence that the next night stands every chance of being better. Sometimes it isn’t better, sometimes it is much worse, but at least I know I am doing something about it, and that I am in control. I will go to bed happy tonight, that I have achieved everything I can today, continue my sleep hygiene and aim for a good nights sleep. I have accepted the sleep for what it is, I haven’t over analysed it, yet done nothing and expect it to get magically better. I hasten to add that this has taken an awful lot of practice, and much more trial and error than I care to mention.
I know that changes to long forged habits are incredibly difficult to do and for anyone who has suffered with sleep problems these habits are your coping mechanism. Its often difficult for any chronic condition to know where to begin. As I have said in previous posts you have to take it one step at a time, not making too many changes at once. With this is mind start with the very beginning of this series spend at least a week looking at where you could perhaps have room to make improvements. This may include speaking to your doctor, family and friends to gain their support.
Eventually the good night comes, and when it does I give the biggest thanks I possibly can for its return. It feels amazing and feels even more fantastic knowing that it came back because of what I did, and through sheer determination, not magic.
It has been quite sometime since I did one of these posts!
Eating is still going very very well, and except for the odd day I generally get my eating right. Bowel symptoms are still ongoing on the occasional day, but on the whole, most days, I am almost symptom free. When my symptoms do come I can usually attribute it to something quite easily, such as then odd time I drink some alcohol, or devour a cheeky ice cream…..
I seem to be entering a bad phase again from an immunity point of view which is why I haven’t had the energy to blog as much as I would like. I had a heavy cold just a few weeks ago, and over the weekend have developed pyelonephritis. For once I have had to give in to some antibiotics, but am sure I’ll be feeling good again soon enough.
Work is also going well. I’m lending a hand on a project, which when done in between my clinical days seems to be suiting me well and my symptoms are a bit more manageable. Must remember to take those breaks though….!
Well thats enough of a round up from me, how has your week been? Do let me know in the comments below. For now, here are my latest foodie delights.
I hope you can find something here to inspire you to make a change to you diet that will improve your health for the better.
As ever you can find me on Twitter, Facebook, and Instagram where I am aiming to pick up my engagement again in the next couple of weeks.
I have somewhat neglected you all over the last two weeks, but not without good reason.
As explained in my last post, I had a bit of a fibromyalgia flare, a nasty cold, and a busy week at work just two weeks ago, and my main aim in life at that time was to simply just get through it. Then, last week, I was on holiday with my beautiful family and we needed time to be together and I realised that despite the plans to blog while I was away, I really just needed the time to recuperate following my flare and illness.
The week away was just what I needed. I wouldn’t say it was restful, at least not in the physical sense, but it was restful for the mind. I felt like I had some much needed time to do the things I love, be active and just to focus on our little family unit.
By the end of the week, I’ll be honest, I hurt from head to toe, and felt more tired in a physical sense than I have in a long time, but that what happens when you throw yourself down one too many waterslides! However, the pain and fatigue was worth the pleasure of having the fun, and after a very restful weekend at my parents (god bless them) I now feel recovered from my holiday antics.
The thing with holidays and other fun times with fibromyalgia, is that the fibromyalgia can often leave you feeling scared to have fun, scared to let go, and scared to delve into the unknown. You worry that your actions will bite you in the ass the next day, and that fun for one day will make you pay for a week or more. You worry that by being ambitious with your actions too soon into the holiday will ruin the rest of the holiday, not only for yourself but also for your family.
Half the battle for me is not worrying about what may or may not happen if I decide to just let go and have fun. I find it hard not to wake up the next day and automatically scan my body for aches and pains. I worked really hard on this holiday to pretty much push the pain and other symptoms aside for the short time we were away, and to say ‘sod it’, but I did this within reason and dropped in some things that were good for the fibromyalgia here and there.
The holiday had a welcome spa session mid way through and this most certainly helped. 3 hours of relaxing and using all of the things that I know help my pain like aromatherapy, heat and mindfulness, most definitely undone some of the damage of a little too much fun. As a family we also made good use of the pool every day, and hot whirlpool too, and this helped my symptoms enormously.
By taking the time to think about your holiday, recognising the upper limit of your abilities and looking at what you have on offer to help with your symptoms, you can make so much more of your holiday. Also being honest with your fellow holiday goers helps to control their expectations of what you can achieve. And yes, it may hurt like a bitch when you get home, but by taking a little time after to reset (remember if you are employed to factor this into when you return home and then to work) you can recover. For me this meant enlisting the help of my parents, and actually not being at home where I would be tempted to unpack, do the laundry and the housework.
While it is important to mentally ‘let go’, it is equally important not to let go of all the things that you know help and you are able to easily continue. I maintained my sleep hygiene, my step count, my physiotherapy and my anti inflammatory diet (with the exception of one dairy ice cream) throughout my holiday which enabled me to do far more than I ever anticipated. I returned from holiday feeling tired, but accomplished, and that I had achieved something amazing for my first holiday away since being diagnosed. I now can’t wait for the next one in 7 weeks.
I’d like to know from fellow chronic illness readers what you have learnt about making the most of your holiday? What works for you and how do you feel about letting go? Feel free to share your thoughts in the comments below, or over on my social media channels.
Hugest apologies for the quiet blogging activity this week. Its been a challenging week. This is just a short post to explain why and to show you I’m still alive!
This week I got my first cold of this year after working hard on repairing my immune system following last years insult. While on the one hand I was celebrating not getting a cold in so long, I was also feeling sorry for myself as when I get a virus, my Gilbert’s Syndrome kicks in and makes me tired, and my fibromyalgia loses the run of itself a little. However, it was short lived, no time off work was required and despite my laziness in the kitchen I have still managed to remain gluten and dairy free. Every cloud…..
Coupled with this was my last week of a phased return at work and a ramping up of activity as I am no longer wrapping myself up in cotton wool and avoiding stressful situations. After all, I am there to do a job and do it I will. I am learning it is not the stressful situation itself that causes a peak in my fibromyalgia symptoms but rather the way I handle them. I am almost at full time hours and this is making me more tired than I would like to be, but think this is mainly because I have been poorly too. My main thing to work on when I get back is taking an actual break now my hours are going to be full time, I’m terrible at taking a break and I know it will make me unwell. I get so into things that I find it hard to walk away for the short 30 minute break I need. Any suggestions would be welcome!
In order to get thorough the week I decided to just focus on getting over the cold and getting through my week at work. I can honestly say I haven’t done much else, but I did get through it. However, it meant that I had to withdraw myself from social media, blogging and awareness raising for just a little while. I also had to skip my submission for a magazine article in July.
Do I feel bad about this? Hell no. My blogging and social media awareness activities are not my job, midwifery is. My health and family equally come first and without either I am not very much at all. Midwifery comes up very quickly behind in third place. So these three things had to be my priority this week.
I am now on annual leave (yippee), and all packed up for a few nights away with the family. Countryside, walking, family, and fun awaits, and so does my blog. I’m planning on using a little of the time on blogging, without the time constraints I am usually against, but the holiday fun will of course come first.
Over on Instagram I will be sharing some of the highlights of my holiday to demonstrate that despite chronic illness, spoonies just want to and can have fun. It doesn’t come without its challenges but the fun will far outweigh the consequences.
For now, I am relaxing with the tigers, on the sofa, dreaming of the country. I’m planning my next weeks posts, and reflecting on the week that has just been. I’m focusing on how I can use my week off work to get a better handle on the fibromyalgia as I have kind of lost my grip on it with being ill this week. Finally I am hoping that ALL of you have had a blessed week and are happy with life.
I hope you have had a good day. Friday is almost here! I was incredibly glad to come home today after initially going many miles in the wrong direction on the wrong train and then getting wet in the rain!
Following on from last weeks blog post introducing me and my fibromyalgia, I promised to get the nitty gritty of how I thrive with The F Word. All opinions and thoughts in these posts are my own and as you will know, I choose to keep this blog a positive space, full of proactive advice of how fibromyalgia can be addressed naturopathically. However, I also feel that sharing the reality of living with a chronic illness is important in raising awareness.
That being said, I do still want to keep the blog as positive as possible, so instead of just moaning about my fibromyalgia, I thought it would be useful to talk about what has changed so that it doesn’t completely ruin my life. At work today we had the most inspiring woman come and speak to us about leadership, and she spoke about viewing obstacles as opportunities. While this is incredibly helpful to me in my role at work it sprung to mind that this is exactly the way I approach my fibromyalgia, and I am going to use this framework to describe to you how my life has changed with fibromyalgia, and how I feel it has actually changed for the better. Every cloud has a silver lining and all that jazz.
I thought I would start with focusing on how it has affected my home life, with those people who are nearest and dearest to me. I can’t list everything but I thought it would be useful to share what are probably the most common problems with fibromyalgia, and without action could become the most distressing.
I am blessed enough to have been married for 11.5 years to Matthew. Each day I give thanks for the man that asked me to marry him one rainy June evening in Guildford. We have amazing twin girls Edith and Emily, aged almost 7 (we are reminded every day). We live in Greater London and have done for 13 years. Both Matthew and I originate from Portsmouth (South Coast of the UK for those overseas readers), and so ALL of our closest family members are still there, so we have no family nearby.
Obstacle #1 – We have learnt the hard way that all work and no recovery is really not healthy for anybody and we had the balance all wrong. We were constantly working opposite shifts, leaving each other alone to parent and do all of the things that being an adult encompasses. We were often chasing rainbows and always looking for what was next and looking for more, instead of embracing the moment and being content with what we already had. This was incredibly draining for both of us and on refection probably expedited the onset of my fibromyalgia, but I think a lot of families are like this. The rapid onset of my fibromyalgia left me in incredible pain, hardly able to stay awake yet not be able to sleep (not sure how that works), and very distressed.
The opportunity – Something had to give, and once I considered going back to work, it first meant a change in working hours for us both. There was no way we could go back to the ways things were without either destroying me or putting pressure on our family relationships. While this is coming at a financial sacrifice, I firmly believe that money does not buy you happiness, but balance in life does. We have both been lucky enough to have had our offers of how we can offer our best to our employers accepted, which means that although we are both work more ‘days’ per week we are now working less hours per day. We are now able to divide up the house and family responsibilities more manageably, and have more time together as a family each day. There is now no day that will go by where I will not see my husband or children because of work (before I would often go at least a couple of days without seeing them). We are less tired when we are together which ultimately means that the time we do spend together is of better quality and everyone is in a better mood. Our mental health has improved immensely. The girls know what to expect from their day and kids love routine. For my fibromyalgia this means that on the whole my symptoms are much more manageable too.
I have also discovered the art of mindfulness and gratitude because of fibromyalgia. I am now seeing clearer than ever and am honestly the most content I have ever been in my life despite being in constant pain and feeling almost always tired. By giving thanks for what I already have, I naturally want less. By wanting less, I no longer feel that horrible feeling of discontent, that I am not good enough. I no longer feel like I am failing as a mother, or a wife, and as a result my mood is lifted and a good mood gives me momentum to continue with the good habits that are best for my fibromyalgia.
Obstacle #2 – Long gone are the days where we could stay up late together and watch our favourite TV programmes or a film. I need to stay away from screens and blue light for a good 90 minutes before I sleep.
The opportunity – Due to the change in what I can or can’t manage, even simple things like watching TV, we have been able to reacquaint ourselves with old passions. We are now reading more and actually spend more time talking. We listen to more of our favourite podcasts together, and are discovering new ones to listen to. We are actually getting to bed a decent hour and sleeping better as a result which directly impacts our moods the next day. Just because you can no longer do one thing doesnt mean you can’t have fun in other ways.
Obstacle #3 – We now need to be more mindful of what we do together, and as a family on our ‘rest’ days, in order for me to stay well and to maintain the strength in our family unit that we have worked so hard to achieve. At present long day trips out are a struggle for me and often it isn’t until the day that I know whether or not I am capable of going out on that long anticipated trip. This can lead to frustration and disappointment for everyone.
The opportunity – We no longer tell the girls when we are ‘thinking’ about doing things. This isn’t because we don’t want them to get excited, but because we don’t want them to be disappointed. Matt and I will often talk about what we could do at the weekend but this is dependant on how we are all feeling on the day, and we decide when the time comes. What is great about this is that the girls now feel less entitled to do things outside of the home for fun and more thankful. If we wake up and everyone is having a good feeling about the day we suddenly spring a surprise on them and their excitement is infectious. It also feels a little more spontaneous which adds to the excitement factor. Matt and I now have a better understanding and respect for each other and that despite plans, sometimes one or both parties may simply not feel like doing what we have planned. This has also led to placing less pressure on each other to ‘perform’ as such, which leads to a better relationship. I would also say we now know each other better than ever.
Obstacle #4 – Household chores are more draining for me now, so I pretty much have to schedule them into my day instead squeezing them in when I have time. Sometimes, rest has to be prioritised over the hoovering and this can lead to a messy house, which then makes my brain feel cluttered.
The opportunity – With our new working hours I have been able to allocate a time of my day (god that sounds boring) where I can stay on top of the chores around the house. This is done in balance with rest time and taking time to do the things I enjoy. Routine is incredibly helpful in managing fibromyalgia, and I know that the time of the day I allocate is just enough to get all the little jobs done without rushing. As a result, particularly over this last week, the house is tidier and cleaner, but without the feeling that it has been hard work. I spend less time looking for things and more time with my family. I no longer stress about the house being messy because it simply isn’t that bad. I also don’t have to worry about when things are going to get done because I know they will get done, when the time is right.
It is possible to still lead a happy and fulfilling life with fibromyalgia, and I would say that the first place that changes have to be made is in the home. The home should be the place you feel safest, and most content, so it makes sense to get this right before you move onto anything else. If you safe space is a place where you can manage your fibromyalgia well, then you can begin to build the other areas of life around this, knowing that you can always come into this space when the going gets tough.
Please come and say hello to my on social media 🙂 and let my know what opportunities fibromyalgia has presented to you.
I love cake. I mean, I really love cake. But after going gluten and dairy free I lost my baking mojo. I had convinced myself that nothing would taste the same ever again and that I would only be disappointed. Boy I was wrong!
This Gluten and Dairy Free Coconut Victoria Sponge really helped me recover from my baking grief. It was easy to make, and represented everything I love in a cake. The sponge was light and rose well, it had lashings of buttercream, and it tasted oh so sweet.
So I just had to share it with you all on here. I hasten to add that although I have gone dairy free I have not gone egg free and opted to make this cake using eggs, but as this is a very wet mix already it can be easily veganised by using an egg replacer.
3 eggs (or the equivalent of egg replacer for a vegan cake)
2 tbsp coconut cream
1.5 tsp baking powder
175g gluten free self raising flour
1/4 tsp xanthan gum
50g dessicated coconut
For the filling and topping
300g icing sugar
50g dairy free margarine from the fridge
1.5 tbsp coconut cream
Pre heat the oven to gas 4/180 degrees/fan oven 160 degrees. Line the bases and grease the sides of 2 x 8inch sandwich tins.
Cream the margarine and sugar together until light, pale and fluffy.
Beat in the eggs one at a time, mixing well, and scraping down the sides of the bowl when mixing.
Beat in the coconut cream.
Add the baking powder, flour, xanthan gum and desiccated coconut to the bowl and fold in very gently with a large metal spoon, working hard to maintain as much air in the mixture as possible.
Divide the mixture between the two tins and bake for 25 minutes until light and golden. Test that the cake is done by gentle pressing the centre of the cake, it should spring back up nicely. Leave to cool for a few minutes in the tins and then gently turn out onto a cooling rack.
While the cakes are cooling make the buttercream by placing the icing sugar, cold margarine and coconut cream in a bowl and beating with a whisk until light and fluffy. You may find that you icing is a little runny at first, but place it into the fridge for 30 minutes and it will firm up enough to not fall off your cake! If you find that your icing is too stiff then simply add a little more coconut cream, and if too runny, a little more icing sugar.
Make sure your cakes have COMPLETELY cooled. When you are sure they are cooled, spread one half of the icing over one cake, and raspberry jam to your liking on the other cake. Sandwich the cakes together and top the cake with the remaining buttercream. If you are feeling fancy you can sprinkle some extra desiccated coconut on top of your cake too….!
Hopefully your cake will look a little like this. I quite like the icing running out the. middle!
I hope you enjoyed this recipe! Please do let me know what you would like to see me try to bake and recipe share in the comments section below, and also what you think of the cake if you make it!