Posts by Emma Hart
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but then i always have to check and see if i am wearing my glasses
Key brain-fog moments for me: working out that the reason my vision was fogging up was because I was still wearing my glasses, in the shower.
Also, yes, what Sue said.
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*worry not bibliophiles, they have only moved half a block to a single floor site at 117 Manchester Street, with a lot less dross...
But... that was part of the beauty of the Smith's experience, the feeling that the entire three floors could fall on you at any moment, drowning you in a flood of foxed spotty smelly dross which would contain a handful of absolute gems. Blimmin' progress.
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Dyan, can I ask you to be a bit more precise with your terminology? I know it's not easy when CFS has so many different names, but Chronic Fatigue Syndrome is different from 'chronic fatigue'. CFS is a condition - or a closely-related group of conditions - whereas chronic fatigue is a symptom, as you've said, of a whole bunch of different things.
Also, while I do understand what you and Megan are saying, being told how to feel about something isn't actually all that helpful. I was trying to explain the emotional experience of treatments failing, as an insight into why people may not actually be keen to get on the bus with the next exciting new development. "Don't take it personally" is kind of... close to 'buck up'. Please don't explain what you meant, I know what you meant, and I'm saying it doesn't help. Or at least, it doesn't help me.
(It hasn't all been 'boo hoo I'm so useless'. I did actually ask my partner to run my immunologist over in the hospital car park.)
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I've been thinking about this overnight, and I say this with all the love in the word, but you realise that's ridiculous, right, Emma? You're blaming yourself that things don't work for you.
Dude, it's not a level playing field. If a medical professional tells me that a particular therapy is a successful treatment for my condition but that it depends on me working hard and sticking with it, even I am going to believe them. And of course, I wanted it to work. I wanted to be well. It was easier to believe that I just hadn't tried hard enough than that there was no answer.
Also, exhaustion and brain-fog does not lead to clear decisivie defiant thinking.
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- toyohari a Japanese acupuncture or acupressure. Any other acupuncture or massage makes me worse as it overwhelms my body
My acupuncture was also Japanese, it's much gentler than Chinese. It made a huge difference to my pain levels, which I was especially grateful for because I'm very reluctant to take pain medication.
Also, yes, I started writing at Bardic Web during my worst years with CFS, and being able to be creative at my own pace and have contact with other adults without having to make physical effort was hugely helpful. And that led to me starting working, again in a way that could accommodate my physical unpredictability.
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But if you just turn that wheel there half a turn clockwise ....
"No, that one. Half a turn. No, not like that... fuck it, get out of the way."
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I am tempted to go back through months worth of emails to Emma to see of I have ever given her any advice. But I am a little scared to.
I, on the other hand, have given Megan about a metric fucktonne of advice. Though it was mostly 'have a hot bath, a glass of wine and some chocolate'.
And yeah, I think people are much more likely to get this right with friends. You know how they handle this stuff generally, when they're receptive, and when it's better to just shut up. I'm struggling with this right now with my mother, who's just had surgery and who I know, from long experience, is terrible at resting.
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Could I suggest some footwork on this- such as tactical voting in Ohariu-Belmont and especially Epsom to dispose of Messrs Dunne, Hide and their satellite parties...?
We don't need to. Any time up to 90 days after we elect them we can just sack them for no reason, right?
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Yeah, sorry, I'm with Deborah. All advice is well-intentioned. How you feel about giving it actually isn't the point. If you really want to be helpful, genuinely, then you should be thinking about how you're making the recipient of the advice feel.
(Yes, I recognise the irony in giving advice about how to give unwanted advice.)
Basically:
- do you feel you know more, or something different, than this person knows about their own condition, given to you it's 'interesting' and to them it's their life?
- do you know more, or something different, about this condition than their medical professionals do?
- do they appear to be comfortable talking about this, or are they finding it awkward or embarassing?
- and, most importantly, have they asked for advice?
That doesn't mean that there isn't constructive advice. Knowing a sympathetic doctor, for instance.
But also... look, every time you try a pet therapy and it fails, it's like another nail in the coffin. Every time Graduated Exercise Therapy didn't work, I blamed myself. Because it was supposed to, so it must be me fucking up. Not being strong enough. Finding out that it actually DOESN'T work for chronic fatigue was huge. One of the women who emailed me had had all her mercury amalgam fillings removed. Expensive, painful, bothersome, and totally ineffective.
And you know? If you want to help? I have Chronic Fatigue Syndrome. Come weed my garden. Fold my laundry. Take my kids out for the day. Suggest something concrete you think you could do to actually HELP.
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I believe Emma has her hand up too..
Actually, I make magnificent lamb shanks, with honey and rosemary and garlic and red wine. They go all beautifully dark and blood-candied. I'm beginning to think Megan and I should come up and cook.