To feel a bit upset about this present?

[HeyMacWey]

Background:I have moderate to severe cfs/me and as a result am housebound a lot of the time.

Pil came round last week to give me a birthday present: a water bottle and this book.

Cure

Aibu to be a bit upset that they think I can cure me/cfs by drinking a bit more water and thinking positively? You wouldn't do the same to someone who has cancer

Despite having this bastarding illness I always look on the positive side of life and try and see the best in everything - get joy from little things so it's not like I'm depressed and need help with overcoming mild depression.

Pil don't come round that often as I'm too ill to cope with the sensory overload - I can only really have one visitor a week as it really exhausts me to have to think and speak and listen. I think they've got the hump that they can't come round as often to see the dc's as they did before I fell ill.

So Aibu to send these unwanted presents off to the charity shop and maybe get dh to tactfully suggest that they might want to read up a bit more about the illness?

[AnnieOnnieMouse]

Another ME spoonie here. Any sort of book like that would have been returned, inserted rectally. I've learnt pacing myself, and found out about the damage GET does the hard way.
I've had massive support from the online ME community, found some ways to get the most out of life without crashing (too often). Most other people don't have a damned clue, and refuse to be educated about it.
They are just ignorant, self important, disrespectful, know it all gits when they come across an invisible illness.

[HeyMacWey]

My energy is too important to waste on negative thoughts hey :o

vetinari Yes I do a combination of all of three of those and whilst it may have stopped me from being more ill it also helps regain some control over the situation and stay mentally strong - I can't control my health but I can control what I eat and how I choose to use my emotional energy.

[Veterinari]

Fwiw
A good friend if mine suffered CFS/ME for years. She attributes her recovery to a combination of meditation, mindfulness and clean eating. She now writes books on these topics.

It may or may not be useful to your case, but we know that there are definite links between mental and physical health issues, and it sounds as if your PIL were trying to give you a supportive gift

[HeyYouGetOffMyCloud]

Good on you for turning your thinking round Hey.

[Yseulte]

The book mentions meditation and fwiw meditation has really helped me.

[Yseulte]

I think YABU, and I say that as someone who's had CFS for 25 years.

From the reviews it looks like the book was quoted inaccurately in a newspaper, saying it helped CFS. (A pp mentions the Guardian).

They prob read that and thought they'd get it for you. I think it's a very sweet and thoughtful present. Particularly the hot water bottle, which personally, I use all the time.

Reading a synopsis of the book it's not about thinking positively but about the mind's ability to heal, or to help the body heal.

It may be garbage but it was a really nice gesture.

[HeyMacWey]

Upon reflection I do think it was well meant - but I'm over it now :o

[HeyMacWey]

That would be interesting if it was correct - cfs is a physiological illness and biomarkers have been identified in early studies - cfs/me just isn't sexy enough to be funded. We're not dying and we're too knackered to fundraiser and raise awareness.

I have flicked through the book and realised that the section on cfs was actually reprinted in the guardian a few weeks back - it says that someone is cured when in actual fact they are pacing themselves. It's bloody lazy journalism.

It's referring to the pace study which was thwarted with difficulties and secrecy - so much so that freedom of info requests are being refused and other countries refuse to follow the findings.

[Pilgit]

The thing is though there are developments in science all the time and some of those discoveries seem a bit out there at the moment. But idiots then extrapolate these discoveries, write books in it and then people with chronic illnesses are told it can all be cured by eating pineapple (for example) or positive thought etc. It's dangerous and upsetting.

I hope it was just because they are being thoughtless rather than minimising of your illness.

As an aside my old GP thought of depression and cfs as being a spectrum. It was an interesting way of thinking about it.

[onlyowl]

Have any of you actually read the book? It isn't a self-help book and it isn't about homeopathy - it's a science book, written by a journalist from Nature, the scientific journal. She has a PhD in microbiology and is a huge proponent of science. its about neuroscience, not self-help...

[HeyYouGetOffMyCloud]

Another spoonie here. Well I thought I was better but it appears I'm not.

The insensitivity of others when every day is already a struggle is often the final straw for me.

I've distanced myself from those types to be honest

[HeyMacWey]

Any yes - I live my life by the spoon theory :o

[HeyMacWey]

No flaming from me greyponcho Yes tested for all sorts and all negative. Have also at different times cut out dairy and gluten but no noticeable difference to symptoms.

wondering I too was desperate for anything to show up as at least that would've meant it could've been treated.

[WonderingAspie]

I'm surprised that a GP would diagnose ME/CFS without exhausting all other possibilities. I did get tested for coeliac disease, kind of hoping it would be positive just to find something!

[Greyponcho]

At the risk of being flamed... have you ever been tested (blood) for antibodies that indicate coeliac disease?
Can only speak from experience of being (mis-)diagnosed as having CFS, it was utter hell, but turned out to be coeliac disease instead.
I'm not trying to fall into the camp of 'trying to find you a cure', but it's scary how many people have these symptoms and never get tested.

As for the present, give your inlaws a nice cutlery set with a copy of the spoon theory (Google it if you're not familiar with it - it's a good anaology for explaining how conditions such as CFS affect you).

[WonderingAspie]

love, oh yes, those well known things to help ME/CFS, CBT and GET. Except they don't. They are quite widely discredited. I had CBT, load of old shite for ME/CFS. Thinking differently about my illness isn't going to make me better, no matter how much I want it to (plus the therapist I had was rubbish). I was going to try GET but wasn't able to, I do my own thing of walking the school run just to make me do something. It's been 3 and a half years and if I'm honest, it actually makes me feel worse although I do it as it's good for the DCs and I can spend the day resting.

Glad you have binned the book OP. I'd still give them a book about ME/CFS and try educating them on your physical illness as it sounds like they thing it's a psychological one, like many uneducated people when it comes to this illness.

[CheshireChat]

Off topic but I laughed at tea charmer and imagined some tea leaves instead of a snake .
Could your DH have a quiet word and explain why it's insensitive? It might prevent further useless gifts.
Happy birthday and enjoy your bath by the way.

[defineme]

I think the book dismisses a lot of 'alternative' medicine and uses peer reviewed studies when looking at others-The Guardian, Sunday Times,New York Times etc seemed to think it was okay-can't find any truly shit reviews. She's a highly qualified scientist/journalist. Absolutely fine if it's not your bag, but please donate it-it could certainly help someone.
Sorry you are unwell and I hope you got some presents you did like.
I am usually underwhelmed (privately in my head) by 99% of my presents, simply because i am a fussy bitch (again privately in my head) so YANBU!

[gotthemoononastick]

Glad you are not wasting energy on the book OP.Who knows what there motive was?

Cancer diagnoses horrify people when they hear.

I had gifts from many well meaners,but no spare energy to do anything but vomit.Especially when these gifts were food or scented in any way.Many,many crazy clipped articles and books from all over the planet.I could smell the rank fear of the givers.

Today I treasure every thought and gesture that came my way and I understand.

[grannytomine]

HeyMacWey, yes the family know. I retired from work last year and they bought me a huge bouquet, it must have cost a fortune and of course they weren't aware of husband's allergy, they knew about his back. It made me sad as I had to give it away and didn't get the chance to enjoy a lovely gift but I know they meant well even if they got it wrong.

My other gift was jewellery, lovely something I can keep forever. Shame that in 20 years working with me they never noticed I don't wear jewellery. It is sitting in a box in a drawer, I tried to give it to my daughter but it is yellow gold and she likes white gold. Don't know what to do with it.

It was the usual thing where I worked to phone partners and ask for ideas and I had told me husband what I would love so he was ready when they phoned. For some unknown reason they decided not to bother on this occasion.

I do understand how upsetting getting the "wrong" present can be but I try to think they meant well.

[MartinaJ]

Any self-help book, the likes of Cure or The Secret would probably end up the generous giver's arse so I get you completely. Luckily, except for one deluded aunt who believes that I love poetry and cards with angels and butterflies, this is not the case, so our recycling bin isn't overfilled with unwanted presents.
Looking at your responses you are not one to wallow in self-pity so it looks like they genuinely believe in this, unfortunately. Considering that some of my rather well-educated friends on FB who actually look completely normal believe in stuff like 5 thousand year old Buddhist monks cures of garlic in vodka, half of onion sucking up all viruses in a room and similar drivel, it shouldn't surprise me but somehow it still does. And we laugh at the idea that some tribes in areas untouched by civilization still dance around a wooden pole to bring/stop rain.

[ChubbyChubster]

Ah yes, OP, didn't you know that cfs can be cured by just getting a bit more sleep...or going for a nice walk.

(Dd has CFS so I've heard them all.)

Hugs, and all round x

[VoldysGoneMouldy]

LoveB - and ME clinics also admit that they offer that kind of thing because there is sod all else they can do. Pain killers for pain, sleeping tablets if you have insomnia, anti depressants because being unable to do stuff makes you depressed, and CBT to help you cope with you life being shit.

They don't do anything for the illness. They're tools to help you cope with the illness.

[expatinscotland]

'expat you know as well as I do I wasn't talking about rape or whatever. I was talking about ideas of what helps re illnesses.'

Why no, Love, I did not know that, I am incapable of reading peoples' minds.

I do, however, agree with the OP that she was given a shit gift and should feel no guilt about binning it, giving it away, setting it afire or whatever helps her feel best about it.

[VoldysGoneMouldy]

I have severe ME as well - and people are fucking idiots. Have received a few books in my time, having been ill for ten years now. First one took me aback and I got angry afterwards, all after that have been pushed back and sworn at.

If medicine can't cure my chronic healthy condition, then a fucking book / aloe vera / thinking positively / eating mooncheese blessed by fairies isn't going to bloody do it either.