Heal the soul whilst having FM

[Tjoceans]

There are so many things I've learned from this website about FM. I e noticed that it's easy to suggest things that help with pain and other areas of our lives that are affected by FM, but what we really need is to heal our souls. I don't mean with magic. I just mean that when someone complains of pain we can suggest apple cider vinegar, but we lose a little part of ourselves when we see things in our lives that can be reduced to apple cider vinegar. I just hate that we are reduced to the illness.

[desquinn Partner Volunteer FMAUK Trustee]

is that not a perspective issue. I certainly do not see myself as my illness or my symptoms or feel that mitigations are what I am equated with either. Do think it is good to take time and re-evaluate your position and what you may consider to be the sum of your parts.

Improving your self worth or value or soul can be done by adding value to your life by cherishing positive things like achievements with moving more, seeing more friends and family or volunteering and giving to the community, Altruism helps more than the receiver,

[Wobblygirl in reply to desquinn]

I'm afraid I do see myself as the illness!It's limitations make plans to participate in life disintegrate all too often...

Resting with pain relief in the form of heat keeps one more housebound. I asked family to get me some great products to direct heat to the right places for my birthday so I can plug myself in and be more supple than before but as soon as I'm unplugged from the heat source the aching is full on and I don't want to move...

All too often I remain unwashed and not dressed because pain is too much. Motivation is very low and tasks where I have to move take an age and are often put off!

I feel as if I've sunk into a sort of squalor because personal hygiene is low on the list of self care...

Self respect is dwindling...

My dialogue when writing Christmas cards was informing people how my life had changed in 2021 with my diagnosis. It's changed my life completely! All my activities after medical retirement of classes, singing, volunteering, lectures, teaching and running a craft stall on the local market have all ended as I can't walk to the destination or carry equipment, no energy for singing and pain in shoulders have prevented so many creative activities that my business has slumped. My volunteering without Covid may be possible in the future but I fear I would be fighting for the one chair all too often as stamina is so limited!

They are all full stops and I have yet to discover any new hobbies that don't create pain+fatigue to pursue...

One day I hope some avenue will open up to me...

Your post sounded like you'd worked out some good paths for living a satisfying life.

I admire your determination and acknowledge your achievements.

May I ask how long you have suffered with fibro or CFS or ???

I've had M.E. for about 20+years but pain diagnosis of fibro only this year...

I'm wondering if you ever felt that everything had been lost or had to fade away in those early days of diagnosis???

Your determination to push forward is admirable I am just curious as to how long it took you and whether self doubt or depression ever presented itself?

Congratulations on your achievements.

Wendy

[LisaSnow FMA UK Volunteer]

I understand that illness can often be mistaken as our identity. But it is really just a label if you think about it. We can lose track of who we have been and who we want to be if our attention is given to pain and other inconvenience symptoms. Maybe "healing of soul" can start with spending time with people who love us including ourselves. Let them and ourselves remind us the existence of purpose and greatness within. In the spirit of this holiday let us cherish love, compassion, and forgiveness by practicing them on ourselves first.

Gentle hugs to you and everyone else who needs them. You matter and you are important, regardless of whatever conditions you receive treatments for!!

[Carlt]

Being in pain does not define me and my soul doesn't need healing, my body does (though I accept that it is unlikely to happen).

Kind words and deeds are very nice but right now I need some hard core pain killers that actually work.

Sadly I think that I will start believing that apple cider vinegar will help ease my pain at the same time I start believing in souls.

[aytias]

For me the problem lies on the perspective we have about life goals. We've implicitly learned to pursue so many things (mostly career wise) to the point where we've lost track of what's most important.When an illness like fibro hits, it makes all these goals impossible and that takes you down. On top of that, you look around and you see all the people you know doing what you used to, which makes you punish yourself even more.

It's similar to what some professional athletes get when they happen to get involved in an accident that cripples their spine. They feel like their whole life is useless. Some never come out of it actually.I'm personally grateful I got fibro in my twenties despite having a zero support system. I learnt how to change the narrative in so many aspects of my life. I saved myself from years of therapy in my 40s.

In the end, when you're at your final days of your life and you think back, what will you remember? Will it be your promotions? Or the people you met and the moments you shared?

Or to put it simply, I don't feel reduced to apple cider vinegar. Quite the contrary, I fee like a very sophisticated dressing.

[Midori]

Finding our sense of humour really helps, I find. I have a dark sense of humour and joke about myself constantly, and I find it helps when folk discover you aren't all doom and gloom, but can meet folk on an intellectual level. Too many think disabled folk are stupid, and I disabuse them of that constantly!

To heal my soul I go to a forest, or the coast, or get close to mountains. My garden is also a great comfort, and I shall be growing some veggies next year. I find instrumental music ( not necessarily classical), but Pan pipes, Harps and similar are restful.

[Wobblygirl]

Me too! It is a very sad state to be in... Wx

[JayCeon]

Altho it's proven helpful for FM, therapy like CBT or ACT isn't shared & recommended enough, I feel. In case people are scared of it, I have no problem with coming out of having done loads of CBT in my life and it has along with self-help, books, mailing lists helped me get anxiety down and self-worth and a healthy perspective up. Last year I tried 3 therapists that couldn't help me, but having finished with docs, I felt the need to talk again this year and remembered a psychotherapist I'd been to a few times before, knows her way around trauma and understands fibro too. Been there about 10x now, and it's really a benefit, even tho I don't desperately need it as I neither suffer from trauma, depression, anxiety or any other mental illness. She always finds something I've overlooked, and even if her ideas are sometimes 'wrong', it helps us see what best to tackle.