Make sense of/Observe/Honour Feelings and Emotions in the context of Chronic illness

[Ester]

Thank you everyone for sharing your stories. It takes courage to speak about these parts of ourselves. At least, it used to for me. Now I won’t stop talking about them! Hahaha!

I am still coming to terms with having fibromyalgia and BPD all within the same year. For so long I have pushed away my symptoms, ignored them, brushed them under the rug.

But you cannot run for long.

As Kokuu said, each and every single day is completely different from the last. One day my body can be feeling relatively good. I am able to go for a walk, do some photography, drive somewhere. Then the next day I can barely get out of bed.

I understand life is ever changing, Impermanence is real. And that doesn’t make it suck any less. Desperately holding on to some sort of “control” where I am the one in control, I call the shots, things never have to change… but that isn’t reality.

Reality is growing old, accepting that I cannot control everything, managing the best that I can with what conditions I have. It isn’t easy. There are times where I wish I was my former, younger self. He didn’t struggle so much… his body was in terrific condition, and he could easily hide his mental illnesses rendering them almost undetectable. But that was then.

How I enjoyed those times where I didn’t have to worry about medications, specialist appointments, steroid injections (for fibro), hospital visits, whether I could get out of bed in the morning, how long and far I could walk before needing to stop and rest, losing the ability to do my favourite activities…

As I said, I am still working on acceptance. I still grieve for the body and mind I once had. It is all a process. Not a fun process, but a process nonetheless. I am learning to sit with these uncomfortable emotions when they come up and not running away as I previously would have done. Giving them space, letting them know that all thoughts are welcome, to a point. Once the thoughts become overwhelming or intrusive, for me I need to regroup and try a different strategy.

Letting go of control has quite possibly been the most difficult thing. I still grasp onto thin air, hoping things will change. But they haven’t.

However, I am able to feel when a BPD/depressive episode is occurring (most of the time), I can tell when I am in a fibro flare, I know when my blood glucose is getting too low, I am learning about pacing myself and my body etc.

Maybe I am not completely out of control. There are in fact, things that I am able to do to try and help myself. They may not all work but at least I have tried.

Gasshō,

On

I tend to want to have everything under control and I've been trying to learn to let go. Which is very difficult to me
Reading you helped me to see that it's not a matter of black and white. I can learn to let go, to accept that I don't have total control but that I still have some degree of control and choice. I can try to be content with this degree of choice.
Thanks!

Gassho,
Ester
Satlah

[Ester]

Hi Ester,

I found this:

Case 94
The Book of Serenity
Dongshan is unwell

• A monastic asks Dongshan, "You are ill, teacher, but is there anyone who doesn't get ill?"
• Dongshan replies, "There is"
• The monastic asks, "Does the one who doesn't get ill look after you?"
• Dongshan replies, "I look after him"
• The monastic asks, "How is it when you look after him?"
• Dongshan replies, "There I don't see that he has any illness"

https://everydayzen.org/teachings/dongshan-is-unwell-practicing-with-illness/#:~:text=Once%20upon%20a%20time%2C%20when,We%20bec ome%20crabby%20and%20fearful.

Gasshō,

On

Thanks
Gassho,
Ester

[Ester]

Yes please don't get the impression that I am giving advice or suggesting ignoring medical advice. I can only look to my own experience in not being believed about my disability or not believing myself to fight for what I need. Also not being empowered to be an active participant in my own healing. I also wonder sometimes if we find our way to meditation because no one else seems to be able to do anything for us...

How do I deal with the feelings of lack of worth?

Why do I feel the need to make up for my disability? To compensate for it...?

Why do I feel guilty that I am not the mother, father, sister, brother, son daughter etc that I want to be.

Sorry I made this about me

_/\_
sat/ah
matt

Thanks for sharing.
It's not only about you. Everything you share can help others to understand ourselves better. Plus, even if it was only about yourself (which is not, but even if it was) it's a gift for the rest of us to have a window open to someone else's experience.

I struggle with guilt too. About not being the mother, partner and activist I'd like to be. I'm trying to learn to be more humble, to accept the role I have "in the ecosystem" and just to do my sincere best in this role. I'm trying. Not easy but I'm trying.

Gassho,
Ester
Satlah