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

SmellyBin · May 24

Thanks @WelshBlue I haven't cried for ten hours now you've almost got me started again 🤣 Well, you brought up the gallows humor and emoticons…

I hope you get my tone of voice and more importantly the meaning of what I am saying. Especially as there is so much to unpack from your lovely message. I'll get back to you another time. But for now a big thank you.

WelshBlue · May 24

Don't cry … you'll start me off 😉

My humour is very dark … it's got me through so much and sometimes my wife hates that I make jokes about the worst time in my life that caused the PTSD. If you don't laugh … well they've won and you'll cry, and I look really ugly sobbing …

I just wanted to post to say there are some who understand what you're going through, if only 'mildly' in my case, so I get it

Take care

Bluebell21 · May 24

Hi @SmellyBin thank you.

Grief from illness often involves a sense of loss and identity crisis, as we may feel disconnected from our lives due to the limitations imposed.

Highlights of my day watching Sam with his joy of life as he leaps to catch a fly and his puzzlement when he pats a small branch and it flicks back and hits him on the nose ( he is fifteen month old), having my lunch cooked for me, walking around the house bare foot as it is so warm today.

I hope you have a good evening, lovely connecting with you.

Take care.

Bluebell21 · May 26

Good morning @SmellyBin and @MissMarple I hope you are both ok in this heat. Not a fan myself keep in the shade.

Did you watch Springwatch last night it was brilliant. On again tonight at 8.00pm on BBC2.

Take care of yourselves.

MissMarple · May 26

Hello @Bluebell21 Thank you for asking. I'm having a rough time with the heat as my POTS symptoms get more severe. Hopefully it will improve soon. Take care of yourself. And you too @SmellyBin

SmellyBin · May 26

Yeah @WelshBlue it seems , from what I’ve been reading, the way people are in denial, blame the victim, turn their backs on us… is mostly a defense mechanism. This self-protection to think we are somehow to blame for being ill (or whatever life has thrown at us, women being attacked or abused by men is another well-known example) makes them feel in control, thinking this won’t happen to them – it is a false sense of safety.
Which of course doesn’t mean they have an alibi for not supporting us, especially when we need help the most. What did we celebrate Xmas and birthdays together for, if those who are supposed to have our backs choose the easy way out?

Grief @Bluebell21 is indeed one of the many hidden storms that trouble us. And it comes in so many different shades and forms, if that makes sense. This weekend I was really struggling for longer having that ease that I had when my body was healthy. You know, all those things to consider, taking care of ourselves in the best possible way, being careful not to overdo it especially with the weather on top of things. I think @MissMarple and I spoke about this a while ago as well.

But ultimately, there is nothing wrong with us. Our bodies might not be what they were before, we might not be able to do as much as we were used to, but that doesn’t mean we are less, broken, not good enough. Admittedly, this I need to tell myself quite often.

Hang in there, my lovely friends :)

PS - is someone needs cheering up: I wear thigh-high compression stockings because of my POTS. So during a heatwave I always end up wearing not but those and my underwear, good things the cats can't talk!

MissMarple · May 27

Haha @SmellyBin I wear knee-high compression socks. Paired with knickers only it's quite a fashion statement. We should start our own fashion line 🤣 Today's choice for me was white and orange socks with squirrels on them.

Bluebell21 · May 28

Good morning (just) @SmellyBin

We have to have a full and valued life managing the condition and all the changes we have to make to the life we had before.

I find it is best not to look back at what we used to able to do and focus on what we can do now.

We are still us even if our bodies sometimes let us down.

It is so easy to say we will not overdo things and then on a good day we think we can do more than we can and then pay for it.

We are good enough just the way we are and if others do not see that it is there problem.

I cannot join your fashion parade @SmellyBin and @MissMarple as I do not wear compression stockings. Your socks sound amazing @MissMarple

I hope you are surviving this hot weather. I will be glad when it breaks. Although we did have a storm last night so it is cooler today.

Take care of yourselves.

MissMarple · May 30

How are you doing @SmellyBin ? I hope today is a better day for you. I've read your post from a week ago again, and I am so sorry that you have to deal with this. The physical symptoms of M.E. and co. are bad enough, but when despair takes over, it can be overwhelming. Not to mention how stress/crying/worrying can cause a worsening of physical symptoms. I wish I had a solution to offer. I was in therapy too to come to terms with this illness. It was kind of disappointing when the therapist said that I was doing everything right (be it meditation, working towards acceptance, or whatnot) because I felt that it wasn't really working. I still had all these negative feelings a lot of the time, and it was (is) difficult to find motivation to do anything when that anything is, say, taking a shower. It can feel kind of pointless when what one would like to do is go out, see people, work, engage in hobbies etc.

I really wish I had answers. It has got better for me. With therapy, with time, and with the extreme luck of some of my symptoms improving. Wishing you all the best on this rollercoaster.

SmellyBin · May 31

Thanks for reaching out @MissMarple Indeed, it is all very heavy to carry… life being a rollercoaster with everything we've got going on. You are spot on. I can only hope - like you - that it will improve for me as well, with time and patience. But you mentioning this makes me think (for a tiny bit) that it might be possible for me too.

WelshBlue · June 1

@SmellyBin … deepest apologies, the reply and tagging didn't show up in my notifications

I understand fully what you mean. Out of all the friends I had, I wouldn't say I've got a handful now. Some because they'd rather distance themselves from who I am now and others I drifted away from. Mainly because when I was able, I always jumped to help out, but when I was desperate for help they never had the time.

As for the false sense of safety … yep. I never thought I'd be a husk of who I was. Life is like driving, none of us know what's around the next corner (it makes sense to me 😁)

But BlueBell21 puts it well above. As difficult as it is I try not to let any of the conditions define me. At least not anymore

But then I'm very lucky in that I'm not impacted so severely as I've read here with yourself and fellow contributors. If it wasn't for all the other letters after my name whilst debillitating it would be more manageable

I hope the hot eather didn't affect you too much … temp regulation etc

MissMarple · August 16

Hi @SmellyBin How are you doing? I'm writing here as I don't want to derail the book recommendation thread. I hope cooler temperatures are heading your way, and it will help you cope better. Take care

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

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