Hi there, this is Smelly Bin :) Ill with ME, finding joy and self-compassion

SmellyBin

Hello there wonderful people, I hope y’all doing okay today.

Let me try to explain a bit about me and my circumstances… I’ve been ill with ME for over twenty years, housebound for the most of it and no disability allowance unfortunately. 

Perhaps surprisingly, I do know how to find tiny moments of joy (a bird singing in the garden, petting the cat) and often feel like emphasizing our interconnectedness, but those are far from sufficient with what is going on right now either in my personal life (hello menopause) and the world in general.
You don’t have to be dealing with a troublesome health to be struggling these days, even for those who are able-bodied. For me currently, to navigate pain and difficulties in life, it being all so much, the amount of it overwhelming… that feeling of not knowing how to handle the emptiness, the isolation, the uncertainties, the ignorance.

Pfff, I would’ve thought by now I knew how to deal with all this misery. Instead, I’ve got issues around nervousness (not weird with a dysfunctional nervous system), failing, guilt, and shame. Therefore, I started psychological help two years ago, which is still an ongoing project. Apparently, self-compassion is what I need, but it is hard to let go of ingrained patterns, so I mostly talk to myself as I would to a smelly bin. I would never talk that way to any other person, let me admit.

And as we all know, life is far from easy… feeling pain is what makes us human? According to the AI-assistant I am not alone in this. No, I am only kidding, I know, really know that I am not alone in this, but expect of myself to do and be better than this, which is probably something nobody is capable of.

The good news is, six months ago, celebrating my anniversary * coughs *, I treated myself to a little free library in the front garden. Indeed , I am a book lover, also a crazy cat-lady, and very much interested in mindfulness.

So yeah, struggling and feeling stupid - this is me... let me know if you want to talk about anything that occurs to you with me sharing this. I am looking forward to meeting other imperfect people :) 

PS - I am thinking of reading Tara Brach’s Radical Compassion. Any thoughts on this, either if you read it or would like to?

durhamjaide2001

Hi there and welcome to the forum unfortunately I don't have any experience in MS but I do struggle with mental health so we have something in common but I'm sure there is other people who have MS and will be able to share their lived experiences with you on this forum.

The other thing I would recommend is that you check out the coffee lounge for a general chat or the games den for some fun but other than that just a big warm welcome to this forum.

Pauly21

Thankyou

SmellyBin

Thank you both for your replies.

Yeah, a big warm welcome makes me feel appreciated :) And I've already found a topic about books!

Mary_Scope

A warm welcome to the community from me @SmellyBin!

Thank you for telling us a little bit about yourself, we do have lots of bookworms on the community (including myself!) so I hope you find the community to be a safe and supportive space!

I haven't heard of that book before! What sort of books do you like to read?

SmellyBin

Thank you, Mary. The book by Tara Brach is about being kind to yourself and to let go of feelings of unworthiness. Currently, I am more focused on things I am no longer able to do and I know I am selling myself short (if that is the correct expression), but letting go of certain thoughts is far from easy. I know everyone has an inner critic, but mine is quite the overachiever…

MissMarple

Hello SmellyBin,

Fellow cat lover and bookworm here. I have a bunch of chronic conditions, including ME. After I'd become disabled I had psychotherapy to help me cope with the new reality and my therapist recommended the Radical Compassion book. I can't remember a word of it, I'm afraid 😄 But it certainly helped, alongside therapy and time. I'm also heading towards menopause. Thankfully, I barely notice it as I've already had most of the symptoms anyway. That's the advantage of general ill health! 😄

SmellyBin

Hiya @MissMarple thanks for reaching out and also for sharing your need for help with you mental health. Yeah, it is all a bit much from time to time, isn't it?

For me personally, the exclusion is the most painful: people's ignorance, unease, and ableism. The first year of my therapy of these past two years made me realize how unwelcome I feel in this world.

I've started the book by Tara Brach this Autumn, but I've only just started chapter three. I'd rather do it slow but steady, and there is so much to take in that relates to us being human. I quite like it, despite that the A for allowing can be tough. If you ever feel like re-reading, don't hesitate to get in touch.

So how is your day today? Anything nice going on? What book are you reading? Apart from the non-fiction, I am reading Call of the Penguins, very cute.

MissMarple

https://forum.scope.org.uk/discussion/comment/1097766#Comment_1097766

Hi SmellyBin

The biggest struggle for me was the loss of my independence. Basic things like posting a letter - I need to ask someone to do it for me. I am housebound now, but when I was still going out, in a wheelchair pushed by a friend, lots of people acted like I was an inanimate object.

Strangely enough, the worst treatment I received was from medical professionals, not the general public. Being dismissed, needs ignored… Once I was literally shouted at "You can walk? Then why are you in a wheelchair?" after I offered to walk the few steps to the exam table to avoid having to rearrange the furniture.

Being housebound takes its toll, I know. You might get this surreal feeling, like you are not part of the world or reality. Do you live with family?

Is that the Hazel Prior book? I read the first book in the series where Veronica travelled to Antarctica. I enjoyed it.

SmellyBin

Well @MissMarple , the whole idea of getting ill but not recovering, without a disability allowance, being treated abominably by both the medical system and family and friends… would’ve been otherworldly to me twenty odd years ago.

Everything you say was and still is indeed frustrating and hurtful to me. All of us (chronics generally, people with PAIS definitely) have this experience, I presume.
Have you ever heard of chronic grief? I’ve explained it here and made me realize there is nothing wrong with me (even though I often have to remind myself), I get to feel what I feel, and it is mainly because my difficult – not to say &^)( – circumstances.
So nothing you told me comes as a surprise, but I do feel for you and am wishing things could be different.

Yeah, it is the 2nd of three books by Hazel Prior. Not sure if I feel like buying the third, I got the first two through Netgalley.
And to cheer myself up I’m looking into a card for a friend’s birthday that I can order online. What do you think of this one? She’s not a crazy cat person like I am, but hey it is colorful, right?

MissMarple

I'm sorry to hear that your friends and family haven't been supportive @SmellyBin What is PAIS?

Yes, the grief is ongoing. I am now okay most days (it took some time to get here), then some tiny thing brings it all out again. Like seeing an event at the nearby library that I'd love to attend, but it's impossible.

I would be happy to get a card like that, but I'm a crazy cat person myself so… 🙂