Fibromyalgia & ME/CFS Awareness 2019

Today I’m posting for Fibromyalgia Awareness Day, which falls on May 12th 2019. It’s also ME/CFS awareness week (6-12th May). Why May 12th? It’s to celebrate the birth of Florence Nightingale. My apologies I’m a little late with this post – I’d anticipated writing more for this and posting it yesterday, but then I lost the whole day due to being very poorly. I’m finally back to the land of the living today & trying to catch up!


Fibromyalgia is a tricky one. An invisible illness with added complications of not being picked up on any standard tests. For years, it’s been referred to as an ‘umbrella’ or ‘garbage can’ disease, a label given to patients where other diagnoses have not been found to explain their symptoms. In many cases, doctors, specialists and the public at large have ridiculed it and simply not believed it to even exist. While things are changing and moving in the right direction, there’s a heck of a lot more that needs to be done to aid diagnosis, support and awareness around this life-changing condition.

I was officially diagnosed last year (or was it the year before? My memory & brain function have also been affected!) – I was diagnosed by my rheumatologist with fibromyalgia first and foremost, primarily because of the pain I experience. I said I didn’t want to be greedy & have both, but this also combines with ME/CFS. There’s variation between medical professionals as to the distinction between these, with some seeing them on a sliding scale (between pain with fibro and exhaustion with ME). It’s typically not clear-cut, and diagnosis can be very challenging for various reasons.

For myself and many others, a diagnosis often comes after years of symptoms. The experience is unique for each person; not everyone will have the same symptoms or the same degree of severity with them, just as people have other things in their lives to deal with, differing levels of support, and so on. Similarly, many people will have more than one condition to contend with. For instance, I have things like my stoma, pernicious anaemia, connective tissue disease, chronic migraines, osteopenia, etc. Fibromyalgia is then like the icing on this rather unappealing cake and can come with a whole host of symptoms.


I posted recently about the frustrations with fibro, listing just five of them. It can be a hugely debilitating condition, not to mention frustrating, disheartening and isolating. It can also affect those around the individual with fibromyalgia, the friends and family and loved ones. It’s far more than just pain or just exhaustion.

Purple Butterfly – the symbol representing fibromyalgia.

That said, there are things to learn from illness and ways to adapt to your new ‘normal’. It’s not an easy journey, but it’s an incredibly worthwhile one because you deserve to live the best life you can. I’ve said it before, but it helps to change your perspective on things, for instance with focusing on what you can do, not what you can’t. It can help to seek support, to speak about your experiences (if you wish to), to prioritise self-care, and to remember that you’re not alone.

Acceptance is, I think, incredibly difficult. View it as a constant work-in-progress. Acceptance of what is, with an open mind for new tests, diagnoses and treatments in the future, while focusing on the present to look after yourself and live your life. Write your own story, learn to accept that you may be on a totally different path than the one you thought you’d be on, and try to see the beauty in life and the things to be grateful for along the way. Sometimes you have to squint really hard to see the positives, but they’re there. And remember that it’s okay not to be okay. It’s okay to mourn the life you used to have, to scream at the world, to be pissed off and fed up and miserable about it all. Give yourself time on days when you feel like that. Pick yourself back up when you’re ready.


With fibromyalgia, just as with any other illness or disability, life is possible. It requires adjustments and it can be tough as hell, but those of you with fibromyalgia owe it to yourselves to have the best life you can. You deserve that, it’s not something you have to earn.

It takes a fighter to live with fibromyalgia. It makes you into a warrior.

I would like to hope for the future that there’s more appreciation for what living with this condition is like, and that ignorance is replaced by knowledge. For ME/CFS Awareness & for Fibromyalgia Awareness 2019, I’d like to make a toast to everyone dealing with or has been touched by these life-changing conditions.

Caz  ♥

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31 Comments

  1. Ashley
    May 11, 2019 / 5:00 pm

    I hope you feel better over the weekend. ❤️

    • May 14, 2019 / 3:45 pm

      Thanks lovely, doing a little better today but it’s always swings & roundabouts. I hope you’re keeping well & that all’s going good on the book front! 🙂
      xx

  2. May 11, 2019 / 5:59 pm

    beautifully your self
    compassion energizes
    other’s in need of support 🙂

    • May 14, 2019 / 3:45 pm

      Thank you – Just a little more compassion would make the world a brighter place  ♥

  3. May 11, 2019 / 6:11 pm

    I hope too for a better future for sufferers. We have so many health conditions which are poorly understood and poorly treated. You have a lot to deal with. I see it a lot in support groups – so many people have more than one condition. I often think there must be a connection. Maybe one day, someone will figure it out.

    • May 14, 2019 / 3:44 pm

      I often wonder about the connections with illnesses too, whether that’s to do with an overarching immune system issue or genetics or something similar. And you’re right, there are sadly far too many conditions that are poorly understood where treatment is severely lacking. Let’s keep the hope alive for the future changing that… Thank you for the great comment  ♥

  4. May 11, 2019 / 6:17 pm

    Another great read.l fibro (the life sapper) is a serious and difficult illness to comprehend, I find it difficult to get my own head around it let alone educating those friends and family who have stuck around (and that’s very few) to understand the illness. Gentle hugs sent your way 🙂

    • May 14, 2019 / 3:42 pm

      You’re right, it can be hard enough for us to get our heads around it let alone trying to get others to understand what it’s like. I’m sorry you’ve found people around you drift away as a result, too. Never forget you have a big group of online friends and fellow fibro sufferers who are in your corner, always! Thank you for the wonderful comment 🙂

  5. May 11, 2019 / 6:30 pm

    Praying for you. One of our nieces suffers from fibromyalgia. She never knows how she will feel each day. Thank you for bringing more awareness about this.

    • May 14, 2019 / 3:40 pm

      Thank you, and I’m really sorry about your niece. Sounds like she knows the unpredictability & frustration fibromyalgia can cause. I do hope she’s managing as best she can  ♥
      xx

  6. May 11, 2019 / 11:21 pm

    A wonderful account of a frustratingly unpredictable illness Caz. Thanks for the work you do to help increase our understanding of this complex syndrome.

    • May 14, 2019 / 3:40 pm

      And thank you so much for your support & lovely comments, Marie!  ♥
      xx

  7. May 11, 2019 / 11:54 pm

    I have a dear friend who’s going through so many many tests yet is sure she has it – a terrible, trying illness – you are wonderful to pass along your wisdom, dear Caz <3

    • May 14, 2019 / 3:24 pm

      I’m so sorry about your friend. I hope they run every test they can to see if there’s anything else behind her symptoms, and then give her the support she needs moving forwards. I’m grateful for the Internet, there’s so much now in terms of patient experiences, suggestions, ideas, support… if she’s online, I hope she can find this a comfort to her as diagnosis can be a long, difficult journey. Thank you, da-AL  ♥
      xx

  8. Svet
    May 12, 2019 / 1:55 am

    You are incredible for bringing this up!

    • May 14, 2019 / 3:18 pm

      Aww, I’m not sure about that but I’m trying to get better at taking complements so thank you! I hope you’re well, Svet, and that you’re having a good week so far 🌷
      xx

  9. May 12, 2019 / 8:47 am

    Is it something that medical professionals are only becoming aware of recently? I know someone else who’s been diagnosed with it recently after having symptoms for ages.

    • May 14, 2019 / 3:17 pm

      I think there’s more knowledge circulating in the medical profession; it’s not a new condition, but there’s more awareness of it, more information and a little less disbelief over it (though many myths persevere). I hope whoever it is you know that’s been recently diagnosed gets adequate support, or can turn to sources online as there’s a lot here now in terms of blogs and forums and social media groups that can provide suggestions & support. Thank you for your comment, Mary  ♥
      xx

  10. May 12, 2019 / 12:21 pm

    It certainly does make the toughest warriors of us all! Great awareness day post. I really enjoyed this and yoyr list for awareness month. Tganks for all you do to raise awareness of our conditions! Xx

    • May 12, 2019 / 3:50 pm

      The same to you, I think you do a fantastic job of raising awareness & providing support. Thank you for your lovely comment, Michelle! I hope the weekend is being kind to you 🙂
      xx

  11. May 12, 2019 / 7:52 pm

    I have one dear friend, a former co-worker who suffered from fibromyalgia. Her doctor had found some manner of relief for her, so I’ll have to ask what it was and if it’s still effective. I have no way to gauge your suffering but I do feel much empathy. I can only wish you well and hope your bad spells are few. Keep writing so that the word gets out and more are able to understand what you and others go through on a daily basis. Thank you for being.

    • May 14, 2019 / 3:12 pm

      I’m glad she found something that helped her, it can be difficult to find things to help alleviate or manage symptoms. If you do find out what it was, that would be fantastic; I think a lot of people here would be keen for other suggestions if they’ve not tried. Thank you so much for your wonderful comment, Barbara. I really appreciate it  ♥ I hope you have a lovely rest of your week! xx

  12. May 12, 2019 / 9:45 pm

    Defo not too late for the post, esp for us fibro warriors who struggle with going to sleep! Lol. Great post to help share understanding and awareness for Fibromyalgia Awareness Day 💜 I love your encouragement to still live and make a life with adjustments, as that’s what we have to do to live and not just survive. Thanks for sharing Caz, hope tomorrow is a better day.
    Helen | http://www.helensjourney.com

    • May 14, 2019 / 3:10 pm

      Hah, yes, the days start blending together when bad sleep is involved! I’m really glad you liked the post, and thank you so much for your lovely comment, Helen, it means a lot. I hope the rest of this week is kind to you  ♥

  13. May 13, 2019 / 1:54 pm

    Such an honest account of life with fibromyalgia Caz. I love how we all come together raising awareness one post at a time for a common cause. Hope you’re feeling a bit better (as well as you can be anyway)

    • May 14, 2019 / 2:55 pm

      You’re right, it does bring us all together at times like this, just shows we can be powerful in affecting change!
      Thank you for the lovely comment, Bethan. I hope you’re doing as well -as possible! – too  ♥
      xx

  14. May 13, 2019 / 4:52 pm

    (((hugs)))

    • May 14, 2019 / 2:52 pm

      Hugs received with thanks – right back at you! 🙂

  15. May 17, 2019 / 10:54 am

    You handled this awareness post beautifully, especially hoping for more understanding in the future. So much grace. I am beyond impressed. xx

    • May 17, 2019 / 2:51 pm

      That’s very kind of you, and coming from you given how eloquently you pen your posts to raise awareness, I’m thrilled! Thank you  ♥

  16. May 20, 2019 / 7:30 pm

    Everything you can do to raise people’s awareness helps. You are a warrior, it takes immense strength to see the positives when there’s so many things making life difficult. Stay strong xx

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