Fibromyalgia Awareness Day 2016

I have an invisible illness, one which should I have chosen not to share with you, to look at me, you would never have guessed. Perhaps to the eagle eye, you would pick up on the way that I flinch when I pick up the children in a certain way, the way that I stand, with my hand kneading away at the base of my spine, or the pained look on my face when I am experiencing an excruciating headache. You may think that I seem distant, that I am repeating myself or that my words are a little jumbled, but unless you knew, unless you know, you would never think that for as far back as I can remember, I have lived with the chronic illness, Fibromyalgia.

According to Google, Fibromyalgia is

“a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized tenderness at specific points on the body.”

Symptoms are too many to list, but include –

*widespread pain
*extreme tiredness (fatigue)
*sleep disturbance
*tingling, numbness, swelling
*Headaches
*Irritability/depression
*Poor circulation
*Digestive issues/IBS
*Cognitive impairment
*Burning, stinging, stabbing sensations
*TMJ disfunction
*Neuralgia
*Sensitivity to noise, light, chemicals, food.
*Vision disurbances
*Dizziness

My symtoms started as a young child, when aches and pains would wake me in the middle of the night and I would complain of strange sensations in my body, ailments which I had wrongly assumed were normal. By my teens I began the first of many visits to the doctor, continuously complaining about wide spread pain, to be told that it was most likely growing pains and would improve with age.

By my early twenties I was experiencing massive flare ups, times where I was so exhausted that I could barely climb out of bed, days where I would take pain killers back to back just to ease the constant pain throughout my body. Eventually my doctor agreed that this needed investigating, and through an extensive process of elimination, spanning across several years, the end diagnosis was indeed that of Fibromyalgia.

As a young adult I struggled massively with my diagnosis, having heard nothing previously about this condition and knowing no-one who suffered. It was very difficult to accept that I had a condition that not only impacted on my daily life then, but would impact on my future. The prospect of living my whole life feeling that way was very daunting.

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I think that the hardest part for me, and still is to some degree, was the fact that Fibromyalgia, along with the majority of chronic illnesses, are so widely misunderstood. To look at me, I look well. I have become very clever at hiding my pain, putting on a brave face and laughing and joking as though I don’t have a care in the world. When asked, “How are you doing?”, I will always reply, “Great! Couldn’t be better!” rather than admitting that I am struggling, rather than telling the truth.

And the truth is this. Some days I am in so much pain that just the feel of my clothes against my skin is unbearable. Lifting the children brings tears to my eyes, kneeling down on the floor and playing with them will mean that the following day, I am unable to walk. I don’t sleep, not at all some nights, and in stops and starts on others. I experience aches, pains, as we all do, but also stabbing, shooting pains, across the whole of my body, crippling headaches, agonising pain in my joints, my jaw, through to the backs of my eyes. I experience digestive issues, acid reflux, stomach pains and cramps which can hit at any time. I’ve had pins and needles in all four limbs for two years straight, numbness in my face, vision distubances, chest pain. I’ve lost count of the number of times I have been in hospital this last few years, the number of specialists I have seen, the number of times I have sat in my doctors surgery and cried.

I take heavy medication, twenty two tablets each day, to simply be able to function as a parent, as a wife, as a human being.  With the medication comes the side effects, the grogginess, the confusion, the racing heart, dry mouth, itching skin. And yet each day I push myself to keep moving, to power through the pain so that my childrens lives are affected as little as possible, so that I can try my hardest to be the parent that they need me to be.

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And I won’t lie to you, it is hard, indescribably hard infact, particularly as a mother of four children, three of whom are still so young. I alternate between the part of me that needs to fight back and not allow this condition to win, and the part of me that admits defeat, that is desperate for someone to see how much I am struggling and offer a hand. I find it very difficut to ask for help, I am hugely stubborn by nature, and allowing the Fibro to win feels very much like I am failing. I would rather exert myself to the point where I am lay in bed, sobbing in pain, rather than give in and admit defeat. But even then, there are times, particularly over these last two years when I was then diagnosed with ME (chronic fatigue syndrome) on top, when I haven’t had a choice, where Fibromyalgia has stolen so much of my life and ultimately, I have been too unwell to fight back.

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And I hear quite often people saying, “Oh I know someone with Fibromyalgia!” or infact claim to have it themselves, and they throw it around in the same way that you would claim to have a headache, or a few aches and pains. The truth is, a large number of people claiming to have Fibromyalgia in this country, have no official diagnosis. They have never seen a specialist or endured the long, exhausting process of elimination. It has simply been something that their doctor may have thrown out there, an option to consider, an avenue to explore at a later date, a last bid attempt to label symptoms for which they cannot find a root cause. There are people who scoff when I tell them that I also have ME, that despite months of investigations, MRIs and specialists, they say, “ME? Never heard of it!”. “Chronic fatigue? Aren’t we all a little tired? And those people are the ones who make this even more difficult for us, those people are the ones that make others so ignorant to the severity of this condition.

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I’m not writing this for sympathy, although I am sure many of you will sympathise emphatically, I am writing it because it is so important to be aware that just because somebody doesn’t look sick, doesn’t mean that they are not. We have had to become fantastic actors, compulsive liars, experts at smiling and gritting our teeth. I have hidden the severity of Fibro from so many people, not through deliberate deception, but simply because sometimes we are even trying to fool ourselves.

Fibromyalgia can be a debilitating, excruciating, exhausting and life changing condition. It can be different from one day to the next, one person to the next, and there is no way of knowing when the next attack will happen. It’s simply a case of trying to figure out our individual triggers. For me, cold, wet weather always coincides with a flare, as does being tired, over exerting myself, through times of stress and anxiety. A simple cold will floor me for weeks, a gentle bump or bang can trigger a flare that will escalate for months. And then there are days where I will experience a flare from absolutely nowhere, in the depths of a blazing hot summer, on a holiday when I am rested and relaxed, at a time when I am feeling okay, when I have dared to take my eye off the ball and I wake up one morning and wham, back to reality.

Today, on Fibromyalgia Awareness day, I want to tell you this. Just because I am capable of going about my daily life today does not mean that I am capable of the same tomorrow. When you see me laughing and smiling please don’t assume that I am “better”, just know that I am doing the best I can at that present time. When I cancel plans last minute, please don’t call me a let down, or stop asking me out in the future, just know that right then, in that moment, I am in too much pain to join you. When I am enjoying a day out with my family, spending time with the children, don’t assume that I am no longer in pain, just know that the next day, when I lie in bed hurting, it will be worth it for every moment of hearing their laughter. When I smile and tell you that I’m doing well, that I feel great, know that I have probably been awake half the night, that I am probably popping pain killers left, right and centre. When you see me out walking with the buggy, swinging the kids around in the park, remember that you wouldn’t ever see me on a bad day, those are the days when we don’t even leave the house. When you tell me that it could be worse, that your Mother, your Grandma, your neighbour is fighting a much more serious illness, please know that I am sorry about that, that I sympathise whole heartedly, but that for me, right here and now, it is hard to imagine a time when I could feel worse, when my degree of pain could be greater.

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When you tell me that I seem well, that there doesn’t look to be anything wrong with me, remember that just because you cannot see it, does not mean that I do not suffer.

Fibro-Awareness-Day

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103 Comments

  1. Baby Anon
    May 12, 2016 / 6:48 pm

    I had heard of fibromyalgia and if I’m honest I didn’t really know what it was. I do now thanks to your beautifully written piece which is both heartwrenching and incredibly informative. I had no idea it was so debilitating. My heart goes out to you; I thought your comment that a day out would be followed by a day in pain but that it was worth it was lovely and underlined a mother’s love. Sometimes the hidden illnesses are much tougher than people imagine. I’m reminded of a favourite quote: ‘Be kind, everyone is fighting a secret battle.’ Thanks for sharing x

    • May 12, 2016 / 8:40 pm

      That is one of my favourite quotes, it’s so true isn’t it? I don’t often talk about having fibro, mainly because it has become so “normal” to me that I sometimes forget that this isn’t everyone elses normality, but also because very few people have heard of it and it’s very hard to explain off the top of my head, particularly on the days when the fibro fog is taking over! I’m glad that this helped inform you a little about the condition, I think awareness days are really important aren’t they? Thanks for reading. xxx

      • Baby Anon
        May 12, 2016 / 8:43 pm

        I completely agree. I think we need to have days like this to promote understanding and tolerance and care for each other. Life’s tough enough sometimes, we could all do with a bit more caring xx

  2. May 12, 2016 / 8:51 pm

    This was a very educational read Laura – not just about your condition, but about how we might all be feeling underneath that smile. When someone says they’re fine – but their eyes tell a different story. With more I read about you and your life I am inspired more and more. You are one heck of a lady xxx
    Thanks for linking up with #coolmumclub

    • May 12, 2016 / 9:18 pm

      Thank you so much, I certainly don’t feel like it but it’s much appreciated. And yes, it’s a real eye opener at times when you think about how many of us are walking around with invisible illnesses, invisible pain, physically and mentally. I think that’s why it is so important to be kind to others, to always remind ourselves that there may be an excuse for the way somebody behaves, to never take things at face value. Thank you for reading, and for hosting, as always. xxx

  3. May 13, 2016 / 10:47 am

    Really eye opening read, thanks for posting. I have another invisible illness, Colitis, nowhere near as severe as you do but in the beginning I had a lot of challenges to get through. Good on you for getting the message out there.

    • May 13, 2016 / 11:21 am

      I have to admit, I have never heard of colitis, I just read a little about it and it sounds awful! I do think invisible illnesses are so hard, if you look well people assume you are well and they expect more of you. I often get the feeling that people are thinking I’m just very lazy, a bit dizzy, a bit of a moaner! They have no idea do they which is why I rarely talk about it, just try and get on with it! Thanks for reading, I hope you stay as well as can be. X

  4. May 13, 2016 / 11:31 am

    My auntie has it and has suffered. Bless you these almost invisible illnesses are the worst as you are crippled inside but seem well. I don’t know how you do it lovely. You are amazing to function and look after your little ones so well. I never scoff at fibro as it seems quite a devastating condition. Keep at it xx #binkylinki

    • May 13, 2016 / 2:35 pm

      Oh your poor Auntie, it’s a terrible condition but ranges in severity. I was *lucky* that the initial stages were not as bad but it has progressed massively with time, I feel like I’m in my nineties some days!! Thank you though, I would hate to think that I was letting the children down but some days we do have to rein in our visits and days out and just chill in the garden, a bit like today!!! Xx

  5. May 13, 2016 / 12:08 pm

    My Dad too is a sufferer! It all seem to begin after he had an accident about 24 years ago. He suffers with extreme fatigue, sometimes sleeping up to 17 hours a day. Severe pain in his back and shoulders. Depression. Irritable bowel often going to toilet 10 times a day and night terrors. So I feel for you completely. He is 63 and they have recently stopped his disability allowance, he really can’t work so he is appealing their decision. Like you say from the utside nobody would know anything was wrong. Lots of love
    Sarah #FabFridayPost x

    • May 13, 2016 / 2:33 pm

      I’m sorry to hear that your Dad suffers, I know many are struggling with the cuts to disability, it’s terrible that they are taking from those who simply cannot work. The exhaustion is probably the hardest part for most people, every simply chore is such a mammoth task, I could sleep for days on end and never feel any less tired! Thank you for reading. Xx

  6. May 13, 2016 / 2:11 pm

    Love this post, and it’s great to see people raising awareness of fibro – I’ve seen it in action, and it can be so debilitating. It’s always hard, I think, having a so-called ‘invisible illness’ because there is still this widespread perception that you’re not *really* ill unless it’s something you can see. I got a diagnosis for CFS a couple of years back but I still feel like a fraud if I talk about it! x #pocolo

    • May 13, 2016 / 2:30 pm

      Thank you, I’m sorry you also suffer. I very rarely mention having CFS (or ME) as like you, I feel like a fraud, and also it’s just one of things like there’s something else wrong with me!! I think, as awful it still is, it’s easier to have an illness that people can see or if they can’t, that they are more aware of. Even members of my own family have called it “yuppy flu”, a leading neurologist told me to “take an afternoon nap” and my own GP said it was psychological. It’s so hard, I hope that raising awareness will help a little, in whatever small way. Xx

  7. May 13, 2016 / 5:30 pm

    I must admit I’ve not heard of fibromyalgia before I think its important to raise awareness about invisable illnesses as not many people hear of them.

    • May 13, 2016 / 7:23 pm

      I think a lot of people haven’t heard of it, and those who have perhaps know someone with it which could be a very different form to the next person. It ranges so much in severity that it would be impossible to lump all fibro sufferers in the same box, and yes, with it being “invisible” it’s a constant battle to make others realise that we are truly suffering. Thanks for reading. xx

  8. May 13, 2016 / 5:44 pm

    I am so sorry you have to suffer such a debilitating condition. Fibro seems to be becoming more common which is frightening. I don’t have Fibro but I do suffer Crohn’s which can have similar symptoms. I can especially relate to The Fatigue (and I know you will understand why I capitalised those words). It is so hard when people say “but you don’t look sick”.

    • May 13, 2016 / 7:22 pm

      Thank you. Crohns is terrible from what I’ve heard, it must be a struggle at times. And yes, The Fatigue is hard isn’t it? There are days when I really want to stand up to fibro and kick ass, but I’m way too tired!! It’s hard with any invisible illness, I do hope that all of these awareness days will help to show others how you can never judge someone simply at face value. xx

  9. May 13, 2016 / 6:31 pm

    I do know two people with this horrid disease and one copes really well and the other really struggles. I hope they find a treatment for it that works

    • May 13, 2016 / 7:20 pm

      Yes I think that’s the thing, it can differ in severity from one person to the next. I was very lucky that in the beginning I had it in quite a mild form but over the last decade it has become extremely debilitating. Medication helps to a point, but as with anything, when you’ve been on it for that long it begins to lose effect. Thanks for reading. xx

    • May 13, 2016 / 7:18 pm

      Ahh thank you, much appreciated! xx

  10. May 13, 2016 / 7:26 pm

    I’ve never head of Fibromyalgia before, but it sounds awful. A lot illnesses are hidden, but that doesn’t mean they don’t exist. Thank you for sharing. Thanks for linking up to the #BinkyLinky

    • May 16, 2016 / 8:36 am

      You’re so right, we have no idea what other people go through every single day, I think it’s important to be mindful of that. Thanks for hosting. xx

  11. May 13, 2016 / 9:16 pm

    I’d heard of Fibromyalgia but never really understood what it was.
    Thank you for raising awareness.

    • May 16, 2016 / 8:36 am

      Thank you, I’m glad this post helped you to understand a little more. xx

  12. May 13, 2016 / 9:31 pm

    I have heard of this invisible illness and it sounds horrible. Sending you virtual hugs x

    • May 16, 2016 / 8:34 am

      Thank you, much appreciated. xx

  13. May 13, 2016 / 9:33 pm

    I’ve heard of this before but never understood what it was. It sounds like daily torture, sending you big hugs x

  14. min1980
    May 13, 2016 / 9:50 pm

    Goodness me you have certainly been through the mill! This is going to sound pathetic now but a few months back I convinced myself I had fibromyalgia after a few weeks of being really run down and exhausted left me with constant niggling aches and pains everywhere. I thought it was probably the flu or some sort of infection, but I had had the flu jab, so convinced myself via Dr Google that it was fibromyalgia. I have to say, just from the reading I did about it at that point I was utterly terrified as it sounded horrendous. Luckily it went so clearly it wasn’t that, but it certainly gave me a new appreciation and understanding of those who do suffer from chronic illnesses. #FabFridayPost

    • May 16, 2016 / 8:34 am

      Aww that doesn’t sound pathetic at all! Infact a lot of sufferers describe fibro as though you have the flu, every single day. I’m so glad that you feel better, but yes, a small insight is sometimes enough to gain a real understanding of how others suffer, it’s great that you can relate to it. Thank you for reading. xx

  15. May 14, 2016 / 3:20 pm

    I think the more awareness that is raised the more people will begin to understand and then illnesses like this will no longer be silent x

    • May 16, 2016 / 8:31 am

      That’s so true, awareness days really do help, I was pleased to be able to contribute in my small way. xx

  16. May 14, 2016 / 6:01 pm

    I had heard of fibromyalgia before but wasn’t actually aware of what it was. It sounds like an awful condition to live with. Thank you for raising awareness and enlightening me as to what it actually is.

    • May 16, 2016 / 8:30 am

      I’m really glad that this gave you a small insight into fibro and how it affects us. Thank you for reading. xx

  17. May 15, 2016 / 1:42 pm

    My cousin was diagnosed with Fibromyalgia two years ago. While it was a relief to finally get a diagnosis, the pain she had to go through was life-changing. A horrendous condition.

    • May 16, 2016 / 7:17 am

      I’m sorry to hear that. I completely relate to that, after years of not knowing, it IS a relief to finally get a diagnosis but also very hard to accept that everything has changed. I try so hard not to let it limit my life in any way but here are days when I am in too much pain or I’m simply too tired to do the things I would like to do. Hoping one day they find a cure. Thanks for reading. Xx

  18. May 15, 2016 / 5:16 pm

    I actually know quite a lot about this as I once had to write a feature on it – well done for raising awareness of this ‘silent’ condition – I didn’t realise you had it xx #picknmix

    • May 16, 2016 / 7:15 am

      Oh wow really? That’s great! And yes, I don’t think that a lot of people know I have it because I try my hardest to keep it to myself and keep going. Maybe not the best approach, especially on a bad day, but it helps me to just get on with life, as do the children! I always say if it wasn’t for having the kids I would have gone to bed years ago and I’d still be there now! Xx

  19. Nige
    May 15, 2016 / 6:41 pm

    Wonderful post so important to have a day to bring awareness thanks for linking to the Binkylinky

    • May 16, 2016 / 7:13 am

      Thanks Nige, and for hosting! X

  20. Gina Caro
    May 15, 2016 / 7:06 pm

    My Mother has Fibro, she was only diagnosed a few years ago. It is a really horrible condition.
    The thing she struggles with the most is people saying things to her like’ but you don’t look ill’. It’s very hard 🙁 #PoCoLo

    • May 16, 2016 / 7:13 am

      So sorry to hear that your Mum suffers, that really is the hardest part when others comment that we don’t look ill. There are some days when I DO look ill, when I haven’t slept and I’m in agony, but those are the days when I can’t even leave the house, people don’t see those days do they? Xx

  21. May 15, 2016 / 7:55 pm

    I cried reading this Laura. My mum has Fibromyalgia, along with rheumatoid and ostio arthritis. I wish I had wise words, or something to help. All I can say is that in my eyes my mum is a hero for getting on with things every day. I see her face when she picks up my boys and the pain it causes her. But she would never not do it. She is the strongest woman I know, and I’m sure your kids will think the same about you. xxxxx #effitfriday

    • May 16, 2016 / 7:11 am

      Oh bless you, I’m so sorry about your mum. A lot of people with fibro also have other rheumatic illnesses too, I have been tested repeatedly for rheumatoid arthritis over the years, it’s dreadful isn’t it? I so hope you’re right, that my children feel the same, I try my hardest to make sure that it doesn’t impact on our lives together but inevitably there are times when it does. We just do what we have to do don’t we? As parents, you just try and get on with it. Xxx

  22. May 15, 2016 / 8:21 pm

    Given that I’ve never heard of it myself, I couldn’t agree more that it’s important to spread the word and help increase awareness. This can’t have been an easy post to write and I have so much respect for that.

    • May 16, 2016 / 7:09 am

      Thank you. Yes it’s great that those who have never heard about it can be made aware due to these Awareness Days. I hope that by educating even a handful of readers I played a small part in that. Xx

  23. May 15, 2016 / 8:32 pm

    I would laugh in the face of the people who dared laugh at you, I have chronic fatigue and people always make out I am a drama queen and that is not the case. So trust me when I say I understand what you are going through because most of the symptoms you have listed I have. The pain in the stomach and the back is so sharp and like you said it can be difficult to have the motivation to keep going. I am so proud of you because I can feel the pain you are in and knowing that you look ahead and always try and stay positive is amazing.

    • May 16, 2016 / 7:07 am

      People have no idea do they? Chronic fatigue isn’t just “being a bit tired” in the same way that fibro isn’t just “a few aches and pains”. That’s lovely of you to say, I think sometimes you just have to keep going don’t you? I would love for even day where I wasn’t tired or in pain though!! Thanks for reading, love to you. Xx

  24. May 16, 2016 / 9:53 am

    This sounds like such a challenging condition, I cannot imagine what it must be like. Looking after your children must be a daily challenge. I really didn’t know very much about the condition, so thanks for sharing this with me.

    • May 16, 2016 / 3:57 pm

      Yes, I think having fibro and being a mummy has been my hardest challenge, especially when mine are all so young and still need lifting, etc. I manage though, I don’t have any other choice, but it is hard at night when I’m suffering simply for going about our daily routine. Thank you for reading. xx

  25. May 16, 2016 / 10:20 am

    so sorry you have been and are still going through this. my mum has fibro and it took many years for her to get a proper diagnosis. for a while it was completely awful but she has learnt how to cope and what triggers pain for her. thanks for sharing because yes, the term misunderstood is common here #KCACOLS

    • May 16, 2016 / 3:56 pm

      I’m sorry to hear that your Mum also suffers, it’s such a terrible condition. I agree it’s about trying to find the triggers, I do find that the warmer weather helps a little which isn’t great living in this country! I always say that we should emigrate but I can’t see that ever happening! Hot baths and heat packs it is! xx

  26. I cried all the way through this post, it was like you stole my words! I too suffer from Fubromyalgia.I was diagnosed finally 8 years ago. The worse for me is not the daily struggle with the pain, I have learnt to deal with it but the inability to form a full sentence without bumbling the words or even remembering the word I am looking for. Thankfully my husband can figure out what i am trying to say. Because of this people think I am very quiet, I’m not really I just can’t talk without sounding like a fool. This is why I love blogging. My computer can correct me. I had to quit nursing because of Fibro. I am now on disability because of it and a few other issues.Thank you for sharing the very true story of a real Fibromyalgia sufferer! Much love sweety! #momsterslink

    • May 16, 2016 / 3:30 pm

      Oh I am so sorry to hear that but it’s so lovely to find someone who just *gets it*. I am exactly the same, I can sit and write something so eloquently and yet asked to vocalise it? I just end up bumbling along and grasping for words which I can’t seem to find. It’s embarrassing, frustrating and scary too, I worry how bad is it going to get? My rheumatologist insists that fibro isn’t degenerative and yet every sufferer I have ever met begs to differ. It’s hard isn’t it, worse when so very few people seem to understand. Thank you so much for your comment, it has made me feel a little less alone on a day where I have been in agony with pain. Thank you. xxx

  27. May 16, 2016 / 4:15 pm

    What a wonderful and honest blog. You are a truly amazing woman and especially to cope with everything and four children. There are many silent illnesses out there and people are incredibly ignorant towards them because they can’t physically see anything. I’m sure your children love you beyond words and when they grow older they will understand what a strong mummy they have. Great blog. Gem (aka Colleyswobbles) #kacols

    • May 16, 2016 / 6:30 pm

      Aww thank you so much, I needed to hear that. I so hope that they will understand that I am doing the best I can faced with what I am. Thank you for reading. xx

      • May 16, 2016 / 6:41 pm

        Absolutely. We’re all battling through motherhood but some people have other battles to deal with at the same time. I have so much respect for you and for others. It can’t be easy. Look after yourself and like I say I’m sure your children will be so proud of you. Xx

        • May 16, 2016 / 7:34 pm

          Thank you, us Mums are pretty special aren’t we?!! xxx

  28. May 16, 2016 / 8:35 pm

    Really well written post – I have several friends & family members with fibro, and I’m no stranger to invisible illnesses myself – Ehlers Danlos and coeliac here. It’s really not easy to live with, especially when you seem to spend half your time educating others about the ins and outs of your conditions!
    Thank you for such an honest, informative post about fibromyalgia and I hope it goes some way to educating people and teaching them to think before they speak! #KCACOLS

  29. Kat
    May 17, 2016 / 3:26 pm

    Thank you for sharing your story and being so honest. I personally do not know what this feels like, i can’t compare my pain to yours but I think raising awareness for these ‘invisible’ illnesses is so important for to help those that don’t understand what it’s like. It’s like mental health, something that you can’t see, but have to deal with every day and wow, 22 tablets that is a chunk and just goes to show how hard it must be to live with something like this. #kcacols

    • May 17, 2016 / 6:21 pm

      Thank you. Yes it’s exactly like mental health, you look okay so people assume you are okay. And yes, it’s a lot of medication and yet without it, I simply couldn’t function! Thanks for reading. xx

  30. Jenni - Odd Socks and Lollipops
    May 17, 2016 / 8:26 pm

    I have recently been diagnosed with Fibromyalgia, and I must admit I am struggling to wrap my head around it all – and I don’t know what to think or feel most of the time – except guilty and like I can’t be the mummy I thought I was going to be to my daughter – even though I have been suffering and struggling for years. I read your post with tears in my eyes because so much of it feels familiar.

    • May 17, 2016 / 8:53 pm

      Oh I’m so sorry to hear that. I remember feeling exactly the same when I got my diagnosis. My eldest was just a baby and although I had been in pain for years, I had hoped that one day I would be better. To get a diagnosis of a life long, chronic condition, is a lot to get your head around. Do you have a rheumatologist consultant? A referral to pain management? Those two things are so important, there are so many things that you can try that do actually help a lot of people. xx

      • Jenni - Odd Socks and Lollipops
        May 18, 2016 / 7:56 am

        Yes, exactly. I was hoping that I would get better. Yes and yes, my first appointment is next week for pain management so I am hoping that I can get focused on something positive. I am hoping that soon I can get my head round stuff and start trying different things out and fingers crossed find some things that help me.

        • May 18, 2016 / 2:04 pm

          I’m so glad you have those things in place. I hope something helps you, even if just a little. Xx

  31. May 18, 2016 / 11:38 am

    I’m going to be honest, I can’t even imagine how hard this is for you so I’m not going to pretend to empathise as I have never experienced this. However, I’m so glad you have shared your story so that I can understand this better. The only comparison I have to this is my friend who has Lyme disease, and I’m not saying they are the same thing but she also suffers behind smiles and “I’m okay,” and most people don’t understand that one day she will be suffering and the next she will be okay. Again, I’ll be honest, I didn’t understand this when she was first diagnosed but have become much more aware and realise you just need to take it moment by moment, as you’ve said. You are such a trooper, you have been through so much Laura, I cannot believe how strong you are. You are an inspiration to me. : ) Thank you so much for sharing with #StayClassy.

    • May 18, 2016 / 2:03 pm

      Aww thank you so much, your comment has made me quite tearful. Lyme disease has a lot of similar symptoms actually, I’m in the process of being tested for that too amongst other things. It’s hard though, especially when you look relatively well and everyone assumes that you’re just being dramatic or a giant let down all the time. I’ve had to develop a thick skin in a lot of ways, those who love and care about me will try to understand, the rest just don’t matter really do they? Thanks for reading and for your lovely comment. Xxx

  32. May 18, 2016 / 1:07 pm

    I have not heard of this condition before and it is really eye opening and honest of you to write this. I hope you are being looked after my dear. I can’t imagine what you are going through and I feel your pain. It must be really hard to plan things and then have to cancel it at the last minute. I really hope that the right specialists will help get you through this. Thank you so much for spreading the awareness. Big hugs. XXX Thanks for linking up with us on #FabFridayPost

    • May 18, 2016 / 2:01 pm

      Thank you, I’ve got an amazing husband who helps me so much and a supportive family and group of friends. Sadly this has become my “normal” and so in that way, it’s just the way it is. Hopefully one day they will find a cure! Xx

  33. May 18, 2016 / 4:52 pm

    My mum has fibromyalgia and it took the doctors years to diagnose it. she has some bad days and some good. its really hard to understand some one with fibromyalgia as its not a physical disease so you cannot see anything. xx

    #KCACOLS

    • May 18, 2016 / 7:41 pm

      I’m sorry to hear that. It’s a really difficult one to diagnose because there is no actual test for it, that’s why there is such a lengthy elimination process. It frustrates me that some doctors just throw it out there with no other tests simply as something to appease a complaint, in that way it belittles a condition that is actually completely debilitating at times. I hope that your Mum has more good days than bad, lots of love. xx

  34. The Pramshed
    May 18, 2016 / 8:40 pm

    Oh lovely, reading this made my heart break, I’m so sorry that you have fight this illness on a daily basis, it sounds truly awful. You are amazing, strong and brave to keep going as Mum everyday! I had no idea what fibromyalgia was until I read your post, I had heard of it, but I didn’t realise it could be so dibilating, or involve having to take 22 tablets a day – reading that part of your post really got me, as I know how bad it can be to take loads of medication. Keep going lovely, and keep your head held high. Thanks so much for joining us at #fortheloveofBLOG, we hope you can come back next week. Claire x

    • May 19, 2016 / 7:47 am

      Ahh thank you so much. I think that’s the problem with fibro, even those who have heard of it aren’t really aware of how bad it can be. Because it varies in the extremities it’s difficult to ever fully explain or understand. Thank you for your lovely comment though, means a lot and I shall be back next week of course! Xxx

  35. madelinelittlejohns
    May 19, 2016 / 1:50 pm

    I’d heard of fibromyalgia before, but wasn’t really sure what it was, and I think posts like yours are so important for raising awareness, for explaining what it means to live with a hidden illness like it. My friend has ME (after fighting for years for a diagnosis), and I know she really struggles with people not understanding how she can seem ‘fine’ one day but not be able to get out of bed the next. The more honest people are about their daily experiences with these illnesses the better, in my opinion. x #KCACOLS

    • May 19, 2016 / 4:14 pm

      Yes, that’s the worst part I think, the symptoms can be so inconsistent, you can be fine one day and bed ridden the next. I have flare ups that last a week, or like this one, for two years. It’s hard to live your life when you are never sure how you will feel from one day to the next, I have lost a lot of friends purely due to that fact. Thanks for reading xx

    • May 19, 2016 / 4:13 pm

      Thank you, and thank you for reading too! xx

  36. May 19, 2016 / 3:59 pm

    This is really eye opening. I remember a girl at school being diagnosed with ME which is probably the only reason why I’ve heard of it, she was off for 18 months as she couldn’t cope with the demands that school placed on her so I can only imagine what it must be likes a mum of four (and an angel). Fibro, I’ve never heard of, though it sounds debilitating. I think it’s so important to share these conditions. Our experiences of them, because there is so much ignorance surrounding chronic illness that it needs to be more widely known so more people understand.

    • May 19, 2016 / 4:13 pm

      Yes, ME on it’s own is horrific, I know people with ME who sleep 20 hours each day and are wheelchair bound due to the exhaustion. My dad actually had ME when I was younger, he was off work for way over a year and I remember thinking that he would die as he was so poorly. Obviously he wouldn’t, and didn’t, but it can be quite scary how extreme the symptoms are. Thank you for reading, I’m glad that it gave you a little insight into chronic illness. xxx

  37. May 19, 2016 / 6:23 pm

    I’ve heard of fybromyalgia before as someone I know has it and she like you struggles so much with the fact that on the outside you look ok. Pain isn’t always visible, similar to mental health. This is such a great post for raising awareness as I think a lot of people don’t understand. I’ve been struggling with on and off joint pain mainly in my hands which I am having blood tests for next week and hoping it’s nothing serious. Thanks for linking to #picknmix

    • May 19, 2016 / 7:18 pm

      Oh I’m sorry to hear about your joint pain, it’s awful isn’t it? Mine is so much worse when the weather is cold and wet, pretty much like it has been all week here! I dream of sunshine and warm temperatures but those days are few and far between up north! Good luck with your bloods. Xx

  38. May 19, 2016 / 10:49 pm

    I have to admit that whilst I’d heard of fibromyalgia, I never really knew much about it or just how debilitating it is. I can imagine the judgemental or thoughtless comments can be incredibly hard to deal with – people can be so very ignorant when it comes to the fact that so many illnesses are quite invisible. Thank you for helping raise awareness about it. Have shared x

    • May 24, 2016 / 7:41 am

      I think a lot of people think the same, to be honest my own family and friends don’t fully understand all it entails, I tend to keep a lot to myself. Thank you for reading though, glad I could share this. Xx

  39. May 19, 2016 / 11:51 pm

    Very educational and also really moving. I’ve heard of fibromyalgia, but must admit I only knew the bare details of what it is, not ever so much. I’m glad you’re sharing your experiences to raise awareness. I agree with you about people needing to think more about how they view and react to people with invisible illnesses. This sounds so hard for you to deal with every day – it must be really difficult with such young children. You do a fantastic job, but I wish there was more treatment available for you (maybe not more – I don’t expect you want more than 22 pills a day – but more effective treatment). #picknmix

    • May 24, 2016 / 7:40 am

      Thank you. I think it’s something that a lot of people may have heard of briefly but never really understood in depth. Because it differs in severity it is easy to think it’s something and nothing when infact, I know people with fibro who are completely housebound each day. One day I’m sure they will come up with something, scientists are discovering new things every day, fingers crossed hey? Xx

  40. May 20, 2016 / 7:08 am

    my mum has fibro and my sister has just found out she has it. it totally sucks and as you said is invisible. thanks for helping to make people aware!
    #pocolo

    • May 24, 2016 / 7:38 am

      Oh I’m so sorry to hear that. There is definitely a genetic link, it worries me about the children but I can’t focus on that too much. Much love and health to your family. Xx

  41. May 20, 2016 / 10:26 pm

    Your doing amazing, just shows you that there are people that struggle but do it silently & beautifully, if that makes sense. Thanks got sharing this and Thanks for linking up to #justanotherlinky x

    • May 24, 2016 / 7:36 am

      Thank you, and yes, I completely understand that. Ive always been one of those people who doesn’t like to make a fuss, sometimes to my detriment, but it’s just easier in some ways to get on with it as best I can. Thanks for reading. Xx

  42. May 21, 2016 / 3:21 pm

    On no that really sucks. I’m so sorry to hear that. It really shows how invisible this condition is. You are really going through a lot. You are one of the most strong people I have ever come across. You are fighter and I love that of you! You are definitely and inspiration to me. Thanks so much for sharing your story at #KCACOLS and for also make me understand a condition that I didn’t know anything about. I hope more people reads this so then they know what. Fibromyalgia is. Hope to see you again tomorrow, 🙂 x

    • May 24, 2016 / 7:33 am

      Thank you so much. That’s a really lovely thing to say. I don’t feel like a fighter some days but then others I feel as though I am taking on the world. Today is one of those days! I’m so glad I was able to tell you a little about fibro, thank you for reading. Xx

  43. May 21, 2016 / 8:35 pm

    I love this post. I have fibromyalgia and it’s nice I’m not alone. Xxx

    • May 24, 2016 / 7:32 am

      Thank you. I’m so sorry to hear that you suffer, it’s hard to explain it sometimes isn’t it? Xx

  44. Morgan Prince
    May 22, 2016 / 1:26 pm

    Oh honey I had no idea you were in such pain! I’d heard of Fibromyalgia but didn’t know a lot about it. Thank you for writing this and raising awareness, I wish you well on your rough days. Thinking of you. xxx
    Thanks for linking to #PoCoLo.

    • May 24, 2016 / 7:31 am

      Thank you, I try to keep it to myself where possible, sometimes it’s just easier isn’t it? Yesterday was a good day where as today it hurts to move. Thankfully the sun is shining and I’m hoping that helps a little. Thanks for hosting. Xx

  45. May 24, 2016 / 11:17 pm

    I used to work for a rheumatoid specialist. There was a wide spectrum with regards to Fibromyalgia but I remember how much pain and almost torture some went through. So sorry to hear this hon. No one realizes how important health is until something goes wrong. Thank you for linking with #momsterslink. Hope to see you again this Thursday upon my return to linky land :))

    • May 26, 2016 / 10:21 am

      Ahh thank you, it’s been a difficult time, especially the last two years. I’m back at the hospital this afternoon to see another consultant, and then another in June. It never ends does it? I’m just hopeful that one of these appointments will find me some relief, will see you later on for momsterslink. xx

  46. Elle Sims
    July 8, 2016 / 4:57 pm

    What a wonderful, well written post about what it feels like to have fibromyalgia. I too have experienced a lot of what you mentioned. I hope this post reaches many people.

    PS – There’s a Fibromyalgia Awareness Day??? I’ve had fibromyalgia for 33 years and this is the first time I’ve heard!

    • July 8, 2016 / 7:32 pm

      That speaks volumes doesn’t it? That you didn’t know there was an awareness day? Clearly it isn’t reaching people as it should and awareness is still failing to be raised. Most people I meet haven’t even heard of fibro, let alone the awareness day! Gentle hugs to you, fibro officially sucks! xx

  47. May 23, 2017 / 10:59 am

    This is such a beautifully written and heart rending post. I can very much sympathise with your condition, I have an underactive thyroid caused by Hashimotos, an illness which is also very poorly understood. Like you I put on a brave face and when I wrote about it for the first time on my blog lately, many people were very surprised. Well done for highlighting the issue of invisible illness – I really hope that one day in the future things improve xx

    • Laura Dove
      May 23, 2017 / 8:27 pm

      Ah thank you. I know quite a lot about Hashimotos having been tested for it this year, hidden illnesses are very hard to battle as it feels, for the most part, we fight them alone. Much love to you. xxx

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