Hi there, this is Smelly Bin :) Ill with ME, finding joy and self-compassion
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?
Comments
-
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.2 -
Thankyou
1 -
Thank you both for your replies.
Yeah, a big warm welcome makes me feel appreciated :) And I've already found a topic about books!
0 -
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?1 -
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…
0 -
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! 😄
1 -
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.
0 -
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.
0 -
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?
0 -
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… 🙂
0 -
Hello @SmellyBin How have you been lately? Any interesting books you've been reading or a trip to the outdoors?
0 -
Helloooo @MissMarple - so good to hear from you, glad you are reaching out. It might not mean that your flare-ups are less, but I have been thinking about you hoping you were on the mend.
And I've also been thinking about you this Sunday. Normally we don't go every weekend for a stroll with the wheelchair, but had been crying two nights in a row at dinner so I was desperate to see the blossoms my partner always mentions when comes back from his run.
I think it was you who mentioned being invisible when in a wheelchair? Often it seems when we meet others in the street they only say hi to him, but not me.
So there were lots of people out and about and there were three couples behind each other walking towards us, the first two greeting both of us. You know, making eye contact (with me behind my sun glasses but you get the point) and then the third set of people were very obviously looking the other way. It seemed so weird, but with having met proper, kind, or at least polite people two seconds before I yelled 'hi' when the two walked past. So they had to greet us. Lol. Don't know why I got that boisterous, perhaps these two were lost? Either way, I had to stop myself from chuckling out loud :)How are you today? What book are you reading?
0 -
I'm glad you managed a little wheelchair stroll @SmellyBin Spring is always a good time to venture out if you can.
I also went out as I had to go to a medical appointment. Not much nature but some fresh air. Isn't it strange to feel the breeze on your face when you haven't been out for a while? My feet feel weird when I put on shoes. Only happens a few times a year. All these little, ordinary things that I'm not used to anymore. Going out, of course, floored me so not much reading (or anything else) is getting done at the moment. I'm hoping to soon start one of the library books that arrived today.
I'm lucky in the sense that I'm not really bothered by how others treat me because of my wheelchair. Except when it's medical professionals. Then I can be absolutely livid because they should know better. I remember a nurse when I was still walking. I was in the hospital for an appointment to check my heart as I couldn't breathe on exertion. She skipped ahead towards the exam room then told me to hurry up when I was lagging behind 🤯
0 -
Yeah, all those ordinary things we're no longer used to, like putting on shoes. Or how some things work, like paying with your watch. Feels like I am watching an episode of Knight Rider. The first time an electric vehicle for a single person came through our street I wasn't sure what I had just seen…
Gosh, all those awful experience with those in medical situations. Indeed, they should know better, but for me personally it is like everyone should know better. Pffff. Thankfully, very occasionally, you meet someone who shows us otherwise.
I hope the crash of that appointment is over soon, but of course that is not something we can control. Still sending you lots of anti-crash vibes :)
Oh, about books, I've made a few bucks online doing surveys and the likes recently and decided to treat myself to Braiding Sweetgrass. Non-fiction about interconnectivity of humans, plants, animals, anything really. The first chapter mentioned how our current society is build on shame and the suggestion of being able to control everything which is not what life is actually about, so I am hoping this book will feed me with thoughts like that. To allow me to feel human. Things such as people who should know better doesn't help to feel equal, does it?
Hopefully you soon get to enjoy your book bag from the library.
1 -
Hi @MissMarple How are you today? Did you manage to start one of the books? I hope you are doing okay today.
0 -
Hello @SmellyBin Hope you are okay.
I've managed to read I'm Not the Only Murderer in My Retirement Home by Fergus Craig, which is a parodic cosy mystery. A serial killer lady is released after 35 years in prison and moves into a retirement home. But then one of the residents gets killed, and everyone blames the lady. It was vert lighthearted and an easy read. I haven't had the brain power for anything more taxing lately.
How do you find Braiding Sweetgrass?
0 -
Yo @MissMarple I am so glad you are up to some light reading, hopefully this means you are doing (slightly) better. Mine is the same: 2nd book from the Thursday Murder Club. I might read Once Upon A Broken Heart next. Sweetgrass being about interconnection - and with me having a hard time being so isolated - I am not that brave yet…
Two days ago was my ME anniversary and I got an email from a friend and there was also a blackcap singing in the garden. Which is apparently very rare, so thank you bird app. Plodding on, is that the right expression? Not exactly onwards and upwards, but putting one foot in front of the other. Mentally, physically. I even hummed Eye of the Tiger a few days ago when I got downstairs, pretending to be Rocky Balboa in my bathrobe :)
Anything that made you smile?
0 -
Hope you've had a few better days @SmellyBin ME anniversary doesn't sound great. I thankfully forgot about mine this year. 🙂
I've been watching this that made me smile. Do you like theatre?
I consider myself lucky to have ME in a day and age where there are so many services and entertainment available online. It's still incredibly hard sometimes. I've been longing for company for days but I wouldn't manage. I had a visitor on Tuesday and I was barely awake, had to ask them to leave after a short while and haven't recovered since. No point to ask anyone else to come over when it would just floor me even more, but I really, really miss some of my friends whom I haven't seen for ages. There's always something else that drains my energy, whether it's a medical appointment, home repairs etc.
Hope you can get some outdoor time, enjoying the spring weather.
0
Categories
- All Categories
- 15.9K Start here and say hello!
- 7.6K Coffee lounge
- 107 Games den
- 1.8K People power
- 161 Announcements and information
- 25.3K Talk about life
- 6.2K Everyday life
- 504 Current affairs
- 2.5K Families and carers
- 874 Education and skills
- 2K Work
- 585 Money and bills
- 3.7K Housing and independent living
- 1.2K Transport and travel
- 643 Relationships
- 1.6K Mental health and wellbeing
- 2.5K Talk about your impairment
- 883 Rare, invisible, & undiagnosed conditions
- 942 Neurological impairments and pain
- 2.2K Cerebral Palsy Network
- 1.3K Autism and neurodiversity
- 40.9K Talk about your benefits
- 6.1K Employment & Support Allowance (ESA)
- 20.3K PIP, DLA, ADP & AA
- 9.1K Universal Credit (UC)
- 5.3K Benefits and income