We all belong to a unique group, the butterfly warriors as I call it (sounds so much nicer than the 'F' word!
None of us want to be in this group. We don't pass a test. We don't sign up and for most of us we can't just leave.
I constantly find myself moaning - the pain is awful, I can't sleep yet I'm always tired, no one is listening, nothing is making this better, why am I not me anymore.... the list goes on and on....
But through this page I have realised something. For every ache I feel there is another butterfly warrior out there feeling the same ache. At 2.37am when I wake up in pain because I feel like someone is stabbing my legs there is another butterfly warrior feeling the same pain. Every time I have to leave work early or phone in sick because my whole body hurts, I can't remember my name and my life becomes too much to bare there is another butterfly warrior feeling the same way.
What I guess I'm trying to say is, although I haven't been on here long, I haven't made friends with you all, I don't have 'followers' and I probably won't ever meet you, THANK YOU.
Even though you have your own butterflies to fight, your own tiredness, pain and anguish. You have taken the time to help me fight mine. You've given suggestions, help and guidance. You've explained your tricks to help survive.
You've given me hope, you've made me feel like someone understands me and that means more to me than anything. The posts I've read have made me laugh, made me cry and made me understand. I don't feel alone anymore. I don't feel like I'm not normal. I feel like there is somewhere I can turn to when I feel like I can't cope anymore and just want to curl up and cry.
So thank you, you amazing, strong, wonderful, kind and caring Butterfly Warriors you rock 🦋💜
Written by
DanielleGemma
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What an inspired post Danielle, love the term Butterfly Warriors - suggests fragility and strength which is a good way of describing a lot of us on here. Also a group or butterflies is called a Kaleidoscope, which is a constantly changing pattern or sequence of elements, which again describes fibro afflictions perfectly. This forum has helped me too if only to ensure I'm interacting with others albeit on line. We're not alone while we have this to turn to. Stay strong lovely. xxx
I think you have summed up everything we (Admin) try to achieve here on the forum.
Obviously all of our members are the important ones, we just have to try to keep the ones that get up to mischief under control (No names mentioned - but you know who you are!!)
Your post genuinely brought a tear to my eyes. I've been in agony since 4am and some days you just want to give in.
Thank you again for an amazing post. You now have a Fellow Follower
I'm so sorry the pain has been so consistent for you today; I know what an awful feeling that is. I also know how it feels to what to crawl up and not face the world - but that's what makes us all Butterfly Warriors - we do all still get up and we do still all face the world and conquer!
What we have to remember is how resiliant a butterfly actually is. It might look fragile but it can fly, it is also very beautiful. Even though it comes from an egg, emerges as a caterpillar that crawls along, becomes a chyrsalis and from that emerges the butterfly, it lays its eggs and the circle begins again. It is rather like us going through all the cycles of pains but at the end again we emerge, flutter our wings and somehow carry on the cycle.
Often we see groups of butterflies and that is how I like to think of the forum a group of people all fluttering together undergoing the same cycles and perhaps at different stages of that cycle but hopefully stil somehow together supporting each other.x
That's so true; I've never thought about it before in that much depth. I think that we are all there together, working as a team to solve all of our issues and just knowing that someone is there makes such a difference.
Always the way, I think that people bury their heads in the sand over things that don't concern them! Hopefully we will get bigger and have a louder voice and we can work towards a cause and a cure xx
Thank you for this post...for the last few days my pain has been through the roof and every time I come to this site I find someone else is walking my same path. Your words are a better way of saying it God Bless you my friend- Christy
Christy I'm so sorry to hear that. It's awful when there is no break in the pain, you feel like you're in the dark with no light. I am just starting to come out of a bad period, of course as always there is 'background' pain and the other delightful symptoms that this illness has.... and now that awful decision do I try and get loads some whilst I feel okay or do I continue resting! Really hope that some relief and sunshine comes your way
Hi, what a great post and lovely words.It really sums up how most of us are feeling. Love the butterfly warriors , I love watching butterflies they are beautiful.
Thank you for such a wonderful, kind and thoughtful post my friend, it is genuinely appreciated. I sincerely hope that your pain has been minimal today. I want to sincerely wish you all the best of luck and please take care of yourself my friend.
Such a beautiful post DanielleGemma . Kind and caring words that do indeed sum up what it's like to live with this or indeed any chronic illness. And butterfly warriors is such a beautiful concept.
Your post definitely picked me up and brought a warm smile to my face. I've been having a tough time lately and had yet another duvet day yesterday. Aches and pains, head on another planet and all because the day before I spent 20 mins testing out my new mobility scooter up to our local shop and back (with my hubby/carer walking along beside me in case I messed up 😜).
Please carry on spreading the thoughtfulness, care and compassion. It's what we are all here for, to make people feel better emotionally even if we can't cure them physically. We're all friends here and we all support each other in whatever way we can. Welcome to the group.
Wishing you as pain free a day as possible, gentle hugs, Margaret.xxx 🤗🤗🤗
Oh the low is like my conditions (ME, Fibromyalgia, Restless leg syndrome, Functional neurological disorder) in that it fluctuates all the time both in duration and the way it manifests. Sometimes it's emotionally, sometimes it's with pain, sometimes it's with brain fog, but mostly it's a mixture of all three. Currently I've been struggling since before Christmas, partly because winter always seems to be a bad time of year for me.
Scooter was fine. I was a bit wary at first and I can't say I'm used to it yet, I've still got a lot of practicing to do before I can be trusted not to take out pedestrians (nearly got one yesterday but I just missed 😁 - must try harder!). Physically it was ok except it made my hands ache just getting used to doing something different with my hands. Only pressing on the tiller controls but that's all it can take sometimes. The scary thing was the pavement to the shop has quite a steep camber on it. Going up it felt like I was going to tip out the side of it, but it wasn't so bad coming back. Then when we got home hubby discovered the seat wasn't locking properly which would have been why it was spinning and making the sensation worse. Fixed that so hopefully next time won't feel so bad. Worst problem though was just that little effort, it's really not far just a few hundred yards or so, took so much out of me that I was wiped out yesterday. Hopefully that will get better with practise as long as I don't overdo things.
We are indeed one big family and there are so many of us you'll pretty much always find something to suit your mood or support you in whatever way you need at any particular time. Enjoy.xxx 🤗💜🤗
Really sorry to hear that! I completely know the feeling.... just started getting a wonderful new symptom and it's completely thrown me! Not sure how to manage it currently!!
The scooter sounds fun - think I need to invest in one.... hopefully now the seat is fixed it will help - let me know! And also think of the freedom and independence you will get now
Absolutely, that's why I got one. To get some degree of independence back.
Up until now I've been 95% housebound, sometimes bedbound. And I can only get out if my husband takes me in the wheelchair. It is self propel but I don't have the energy to do that apart from the simplest of little manouevres. You know like turning to face the other way or wheeling myself through a checkout or something.
At least now on one of my better days if my husband isn't around I can get out for a bit of fresh air. I know I can just sit in the garden but it's not the same as the emotional boost you get from being out in the big wide world again.
I know exactly what you mean... if you don't mind me asking how long have you had fibro? Is it that that has caused your houseboundness?
My hands are starting to feel weird, achy and like I need to click my joints or stretch them or something. I am waiting for an appointment with a new doctor to hopefully get some answers xxx
Interesting question and a moot point. I've had ME (Myalgic Encephalomyelitis) for around 25 years but only been diagnosed about 5. I have been diagnosed with Fibro for around 3 years but have had the aches and pains for a lot longer, probably more like 15.
To be honest I'm not 100% certain I have Fibro. I do wonder if all my four main diagnoses are actually just part and parcel of my ME. Contrary to popular belief ME does involve a lot of pain as well, particularly if you've had it a long time. It also has restless legs as a symptom and spasms, jerks and twitches (as in FND). After all ME is a neurological condition as classified by the World Health Organisation since 1969.
But then I'm not a doctor and currently there aren't the proper tests available on the NHS for ME or indeed any of the other conditions. Time will tell (I hope!)
Interesting about your hands too. I've always had clicky joints all over, not just hands, but no medical professional seems to think it's any thing to do with any of my conditions. I'm constantly spinning various joints to try and get them to click because they feel so uncomfortable. And yes aches and pains are part and parcel of it all.xxx
Ah that's interesting! I think you become a butterfly warrior when they don't know what else to do with you.... I was 'diagnosed' with every condition under the sun before they settled on fibro after loads and loads of tests.
Well I'm hoping the new doctor will listen to me. I'm going to go in and be really honest and hopefully make myself hurt
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God Bless you my friend- Christy
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