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.
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.