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

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  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    I completely see your point @MissMarple All those pros and cons, going over and over in your head. Often I put a note on the window that I don't want to be disturbed, even when I don't expect anyone to come to the door. Indeed, to avoid this sort of situations. But it always so unhappy, the emptiness of our lives, right?

    At the end of Ramadan I was hoping to speak to my neighbor as she often comes over with sugary treats from their festivities. But she arrived at the end of the day and I had no energy left, so my partner answered the door - and was also the one to feast on the cookies and baklawa, as those don't fit my sensitivities.

    BTW, The Handmaid's Tale was indeed upsetting, but in a good way. It was useful to the story. In this case it was plainly weird, and I was afraid the male characters were not the baddies… So I've been reading Bridgerton, hardly feminist stuff but very good for doing not too much thinking. I hope you can find more not too hard thinking books, if so: keep me posted :)

  • MissMarple
    MissMarple Community Member Posts: 468 Empowering

    I'm currently waiting for an audiobook to be available at my library @SmellyBin. Clare Mackintosh It's Not What You Think. Sounds like an easy listen thriller. I get too tired concentrating on written books at the moment.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    Have you read other books by her? I found her on the book app I am currently using, but yours is the latest and not available.
    I did find The Bromance Book Club which I had on my wish list, hopefully also a bit simple and easy to digest.

    Somehow it is harder for me concentrate on audiobooks, so I mostly stick to written books @MissMarple I hope you get yours soon.

  • MissMarple
    MissMarple Community Member Posts: 468 Empowering

    I read I Let You Go, A Game of Lies, Other People's Houses and maybe The Last Party (I can't remember 🙂) @SmellyBin The latter three are part of a series, and the personal life of the detective gets on my nerves to be honest, but I like the crime element. A Game of Lies was particularly clever as I recall. If you don't mind romantic subplots, then they are a good read.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    Thanks for the suggestions @MissMarple Today I am observing the black bird gathering nesting material. What about you?

  • MissMarple
    MissMarple Community Member Posts: 468 Empowering

    I'm resting up for a busy week @SmellyBin Two appointments that weren't my choice to be had within a few days. I'll surely go over my energy limits but trying to limit the damage by starting as fresh as possible. I probably won't be on here much in the upcoming weeks. Take care of yourself until we speak again.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    You seem to be a proper project manager of your own spoony portfolio - yeah, that sounds better than what you've got waiting to deal with. I am saying this just in case you think you should've, could've done things differently.

    Hang in there @MissMarple I'll be sending you good vibes and if you ever feel alone in the difficult circumstances, look up at the sky and someone else is out there… if that helps 🩵

  • MissMarple
    MissMarple Community Member Posts: 468 Empowering

    The first appointment went unexpectedly smoothly and took much less time and effort than I thought. @SmellyBin So I'm now optimistic that the crash might be much less worse than expected. 🙂

    How have you been? It's so nice and sunny here, and I can hear the birds a lot.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    Yaaaay @MissMarple

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    I don’t know where else to post this, so I’ll share my difficulties here in my introduction thread.

    Pffff, the ups and downs, the uncertainty, the miserable nothingness sometimes really gets to me like it did last night. For the fourth evening in a row I had trouble falling asleep and then despair took over: nothing would ever go my way, things would always be hard, I would never get a proper night’s sleep, my ME and menopause on top of it will likely last forever.
    I cried my eyes out and it seemed forever. What is it that they say crying is a relief for your system? Because it wasn’t with me ending up with a blocked nostril (obviously) and somehow a sore arm for no apparent reason. I haven’t even managed four hours or sleep.

    Despite yesterday being happy for the garden smelling as if I was in a forest which I even mentioned here online. But in bed all I could think of was that it is not a forest, it is nothing but a stupid garden with me knowing nothing about the outside world for being housebound. I wish I wasn’t this ill so at least I could catch up with Springwatch, but watching tv is too hard for me. Three out of the last four weekends I was either physically unwell or mentally having a hard time.
    I don’t understand why my healthy lifestyle (diet, mindfulness, psychotherapy) isn’t paying off to show at least a tiny bit of improvement in my energy levels. This year’s resolution was to go freewheeling, no pressure that I should be doing things, not forcing myself, not pushing my boundaries. And even that isn’t working.

    I am crying again, I feel stuck. (And writing this I feel very vulnerable...)

  • Bluebell21
    Bluebell21 Community Member Posts: 6,029 Championing
    edited May 23

    Hello @SmellyBin I am so very sorry you are having such a challenging time. It can sometimes feel as if we are stuck in the same old rut and nothing will ever change.

    I think we are at our most vulnerable when we are awake in the night and you look out and no one else is.

    Could you speak to your GP to see if he can help in any way.

    Perhaps set yourself a target of doing one thing everyday it does not need to be something big. Then you would feel you had achieved something that day.

    Perhaps just looking out of your window and seeing how many birds you can spot.

    You can always talk on the forum and no one knows who you are and no one will judge you.

    This is my Sam and he keeps me going on a bad day.

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    Please take care of yourself.

  • Holly_Alumni
    Holly_Alumni Scope alumni Posts: 6,534 Championing

    I'm sorry too @SmellyBin. I bet the heat doesn't help either, especially at night. I was going to suggest the same as @Bluebell21 😊 Maybe your GP might be able to support with something to help with how you're feeling, and setting small targets each day (especially if it's something that makes you feel good).

    I hope you start to feel a bit better @SmellyBin 💛

  • MissMarple
    MissMarple Community Member Posts: 468 Empowering

    Hi @SmellyBin I'm too unwell myself at the moment to write a proper, thought-out response but just wanted to say that I feel for you and thinking of you. Menopause might be worth looking into (e.g. possible HRT) as it can make things even worse. Sending a big virtual hug. Take care.

    @Bluebell21 Your cat made me smile. And I've got a blanket just like that!

  • Bluebell21
    Bluebell21 Community Member Posts: 6,029 Championing

    Thank you @MissMarple I am sorry you are unwell at the moment and hope the sunshine lifts your spirits just a little.

    Take care.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    Thanks, y’all! A few kind words were indeed what I needed (and a hug and a wonderful cat pic! Yay!), I know we’re all in this together. But geez, life can be tough, right?

    Unfortunately, a GP has nothing to offer for people with ME and I’ve tried HRT, but it didn’t have much of an effect. Thankfully, my therapist is very supportive and tells me I am doing great considering everything I am dealing with. So that what I’ll stick with: working towards acceptance in this excruciating isolation and all the weirdness of being a chronic (leaving me wondering why I should be the only one working on acceptance instead of society, huh?!). Maybe one day things will not feel this heavy @Bluebell21 @Holly_Scope @MissMarple

  • Bluebell21
    Bluebell21 Community Member Posts: 6,029 Championing

    Hi @SmellyBin how are you today? I hope you managed some sleep last night and it was not too warm for you.

    I hope you have as good a day as you can.

    Take care.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    Ah @Bluebell21 that is kind of you to reach out. I slept better than the night before, but still not what I was hoping for. So the visitors I’ve been postponing for weeks have to wait another day or week or whatever. Which isn’t as easy as it may sound, I do feel rather uncomfortable but there is only so much we can handle, right?

    Thankfully, last night after dinner we had a lovely visitor: our tuxedo cat from next door who is always happy to see me, curling up against my legs, even though our own cats give him the stink eye. I might not be popular with people, but it seems I’ve got cool cat vibes =^.^=

    How are you today? And how is Sam?

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  • Bluebell21
    Bluebell21 Community Member Posts: 6,029 Championing

    Hi @SmellyBin you have to feel right to be able to handle visitors, so you did the right thing cancelling.

    The tuxedo cat from next door is lovely and cats always know when we need a bit of support.

    Good for you having cool cat vibes. Cats know where they are welcome.

    I am not too bad thanks and Sam is fine although he is in a bit of a mood having been treated for fleas today. I have not seen any but now he goes out in the garden like to be sure.

    Take care of yourself.

  • SmellyBin
    SmellyBin Community Member Posts: 663 Empowering

    Ha @Bluebell21 I am glad you're doing sort of okay. Yeah, very wise to keep an eye on Sam for having fleas. Once our cat had them and scratched until she had scabs.

    I liked what you said the other day about setting yourself tiny goals that are not exactly necessary. Not that I am one for goals or that sort of set-up, I do know what you mean. I do have a sort of wishful goal for the day and keep a list with highlights. This I got from Mindfulness for Health, a book by Vidyamala Burch. Of course while still acknowledging our grief. So for today I would say…

    Grief - no longer the ease that I had when I had a healthy body and how that impacts everything.

    Highlights: talking to you online, washing my hair, seeing the magpie chicks being fed.

    If you feel like sharing, I would love to know your highlight for today… or anyone else around here. You enjoy the rest of your evening with the lovely Sam.

  • WelshBlue
    WelshBlue Community Member Posts: 1,423 Championing

    Hi @SmellyBin … I've been reading this thread and the meditation posts with interest

    I was diagnosed with Fibro' and mild CFS in 2012 so can sort of understand where you are at.

    My days aren't so debilitating, and try to put the 3 P's into practice whenever possible. Planning Pacing Prioritising. My biggest downfall is the Boom & Bust effect, never knowing when to give up on my good days, then suffering for days maybe weeks later. The pain management clinic preached acceptance and whilst I've accepted I'll never improve, it doesn't stop me grieving for the person I was. Physically demanding job, strong and never home. Now I very rarely go out except shopping and medical appointments, muscles wasted away and get out of breath at the silliest things

    Understanding why it may have happened has helped me to some extent … they say my body and mind have suffered so much trauma (rewards card in A & E 🤣 ) that my body has effectively shut down on itself to protect. They may be right they may be wrong, I wish they'd been wrong about PTSD manifesting but that's a whole different story. As is fibro's nastierbig brother

    I noticed your comment in the mediation thread about 'society not accepting', it's something I've thought about this after so many people have asked … what is actually wrong with you … and I'm unsure whether illness doesn't fit their narrative, whether it's plain ignorance or they're simply scared to admit there are invisible disabilities they can't understand

    I hope you don't mind me posting this here in such a personal thread, but it's a song I wrote to all the 'doubters' … they'll never know what's going on inside

    Hidden Storm … https://www.youtube.com/watch?v=VYG-yKZIey4

    Enough ramblings but I just wanted to say how humbled I am to share a forum with people like yourself, @Santosha12 and @StarryEyed … I only know youse through words, but I've the utmost respect for those words and the person behind them

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