A project to raise awareness of fibromyalgia?

Photo by  Mnxan Opena
Photo by Mnxan Opena

It’s 3:35 AM and I am finding it hard to quiet my mind.

I was going to write about something completely different but then I thought of something I’d like your feedback on.

I am playing around with the idea of producing a ‘radio documentary’ to raise awareness of fibromyalgia. It would be great to ultimately get it on air but at the moment I’m simply thinking of posting it online, here on my blog and Youtube. I think it might be a good source of information and encouragement for those of us living with this debilitating condition.

We cannot deny the lack of research going into fibromyalgia. Well, at least if research is happening I’ve not come across it.

The lack of credible information in the public domain too really unnerves me. Quite often we see articles published on websites I’ve never heard of, claiming that either a cure or the cause of fibromyalgia has been found. I really don’t want to admit it but I think if something this big actually happened, it would be worth seeing it via credible news media. So no, I don’t believe a cure or cause has been found.

I’m waiting for the day when these things happen. We all wait for that cure. In the interim, while we fight our daily battles I think it’s important that we do whatever little we can do raise awareness. God knows I get exhausted of explaining to certain people that it’s not all ‘in the head’ and that positive thinking won’t wish it away. God knows. But even if one person gets it, then it is worth that effort.

Anyway, I’m saying all of that to say I have this idea, still very raw in my head and it would be great if you had any feedback. If I go ahead with this, I’d have to settle in on a theme and it would really help to know what you find to be your biggest issues/concerns around fibromyalgia.

I do hope you are well. Keep fighting the good fight.

Love and hugs 🙂

36 Replies to “A project to raise awareness of fibromyalgia?”

    1. Thanks for your support warriorprincess, means alot. Perhaps you might be willing to participate as an interviewee for my project?
      I’m plodding along, how are you? gentle hugs x

  1. P.s…..the debilitating effects of Fibromyalgia need to be Highlighted. We must speak to ones who will hear. Once a lady called Mag said she “got fibromyalgia cured” but is so UNSYMPATHETIC towards ones who’ve really got it,and have to live with it, that I doubt she even knows what it is.
    Keep up the good fight.

    1. I agree LM. Though there are things help alleviate symptoms, we know that there is no cure for fms .I’ve seen online where a few people made similar claims of being cured but I am not inclined to believe that for various reasons. If there was some kind of alternative ‘cure’ I don’t think it would be evading so many of us along with the few researchers who dedicate their time to finding out more about this condition.

        1. Thanks LM. I will try my best. Keep plodding on with this fighting spirit:) I feel encouraged so much because you say it’s win-able and you walk in my shoes so I believe 🙂 x

  2. Hi Alisha I am encouraged by your blog site 😊 not v good with web speak. My name is Paula. Hi. I have a number of invisible disorders incl fibro and depression. I feel for you. I hope you are having a better day today.

    1. HI Paula, it really means alot to hear your feedback and to know my humble blog can encourage you. i hope you will continue to find encouragement here. It is a place where you will be heard and empathised with. Thanks for your best wishes. I hope you are doing well. Gentle hugs my friend:) x

  3. Hi Alisha I’ve somehow mustered up a tiny bit of energy to iron some clothes.😓
    I’m one of Jehovah’s Witnesses so I am a woman of prayer. It helps a lot. How is your day going so far? Hugs P.xx

    1. Hi Paula, I am pleased that you got some ironing done today. One day at a time is all we can do. I am happy too that you have prayer to uplift you in the dark times. I’ve had a rough day but I achieved everything I set out to do so thankful for that. Keep well, gentle hugs:) x

  4. P.s.. Alisha, I really hope your day is going as well as can be.. I know its hard for us with the constant pushing uphill keep going precious. We are here to support one another. Great blog. Its a happy blog borne out of pain. Till next time.x

    1. Hi Paula, my day has been tough but I am thankful I made it through. How are you doing? I really appreciate your feedback. When I started this blog it was to share and encourage others and I am glad even if it supports one person. Keep well:) x

      1. Alisha…pls tell me how your project to raise FMS awareness is going? U r thoughtful to do that despite being unwell too.
        Hope you are bearing up.
        Speak soon via your lovely blog.
        Keep going sweetie pie.
        Revelation 21:3-5.

        1. Hi Paula, How are you? I feel a bit miserable today. I really appreciate your interest!
          Unfortunately alot of people have committed but not followed through as participants. Over the phone is alright but as a preference I need some more interviewees who I can meet in person and I am now based in London. Things have hit a little lull at the moment but I am confident they will pick back up:) I am also looking at compiling the useful information I have shared over the years into a little handbook on whats worked for me with fms.
          Take care:) x

          1. …meanwhile, lets keep doing our best. Did you inherent fms do you think? My Jamaican Grandmother was bedridden…not sure why but I am practically,too. I have felt unwell probably all my life…tummy pains and migraine as a youngster.
            Keep strong. Gently hugs.P.💐

          2. Agreed Paula. Some of my relatives have fms but have not been diagnosed. I’ve had pains, extreme exhaustion, dizziness insomnia and tummy pains since childhood as well. One day things will be better:) Gentle hugs x

  5. there is a lot of on-going research from many different angles. Sadly, no definitive answers yet and unfortunately most research is focused on pharma (because that’s who is pay for it). I’m looking forward to participating in your radio doc.

      1. Hi Alisha and all😊 having usual struggle as we all are, just keeping in touch and all the best…yes we need to raise awareness all round…gentle hugs x

        1. Hey Paula, really glad to hear from you. Sorry you’re still struggling so. I hope you feel better soon. Bit by bit we will raise awareness together:) It’s really nice to know that the blogging community has so many helpful and concerned fibro patients. Hugs x

    1. So sorry to hear Paula. It is very sunny and windy here as well and Love the day like this. I am very exhausted, having rough days but we push forward in hope that tomorrow will be better:) Wishing you energy and better soon, hugs x

  6. Dear Alisha,
    My post here is my last for a while.
    I pray that you will find comfort in God’s Word.
    I have learned to live and apply Bible principles in my life, endurance too.
    The verse I quoted to you before from the Bible about the end of sickness and death.Rev 21.
    Is is such a comfort to me and hope it is to you.
    Psalm 83:18 is a lovely verse too.
    All the best of everything for the future you are a bold and beautiful young lady.
    Paula and family XXX

    1. Hi Paula,
      I am very sad that you won’t be around for a while. I look forward to hearing from you in future, when I know you will be well.
      Thankyou for stopping by and sharing with you. And for all the lovely things you said of me. You have been very kind and caring, and I take note of it. I hope that God will continue to bless you. All the best to you and yours xxx

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