AIBU or ungrateful ?

[DreamCloud99]

I have CFS .

Yesterday, DH, myself and almost 3yr old DTs travelled 5 hours to visit PIL.

We are staying the week . PIL know I have CFS .

We left early morning and arrived around lunch time . I was very tired and aching head to toe when we arrived.

MIL then announced that she had booked her and I an afternoon tea . I was so exhausted but I went as she had obviously put thought in to it and had paid .

The afternoon tea went on for 3 hours ! I could barely muster the energy to talk by the time we got back .

I was hoping to rest when we got back to theirs . DH had already put the boys to bed .

Then MIL announced that we were going to have a takeaway and watch a film . I could have cried . I could barely walk by now . I apologised to PIL and DH explained to them I needed to rest . MIL looked disappointed but didn't say anything.

As DH went to get our luggage from the car , I overheard PIL talking saying (paraphrasing) "surely dreamcloud could have managed another couple of hours . We haven't seen them for months. I hope she's not planning to spend the week in bed and expect us to watch the twins ...... I keep wanting to tell her if she just lost a bit of weight this wouldn't be happening... "

For the record , I'm a size 14, I used to be a 10 but since having the twins and CFS , I've never lost weight . I don't think I'm morbidly obese but MIL keeps asking how my appetite is , have I managed any exercise etc

I feel so annoyed and gutted actually . We get on well and I feel a bit hurt .

PIL have planned a day at the zoo for today and I'm so exhausted I don't think I can go - but they will obviously not be happy .

What do I do ?

Help

Oh yes, forgot about that! I had that argument with a colleague a few years ago.

Her: Oh, I read that exercise can make it so much better
Me: No, it really doesn't. Exercise is often impossible or can make feelings of exhaustion worse
Her: But the NHS says exercise makes it better
Me: not quite! It suggests a graded re-entry to exercise can be achieved if you are careful and that it can make the sufferer feel better able to cope with day to day living. But it does NOT cure CFS.
Her: no, I am sure you are wrong
Me: Yes. 2 degrees in health and exercise, taken partly because of 30 years of having ME/CFS, and I am clueless
Her: [nervous giggle] you are so funny!

Pshaw!

Well, at least it sounds like your DH has his head screwed on.

Fuck them. Seriously. You have much more patience than I have because I'd have crawled down those stairs if I needed to purely to tell them what idiots they were.

That said, I do think it's easy for people who don't have chronic conditions to forget the extent they impact on everything.

ME is cruel. Be kind to yourself; you must be completely wiped out after yesterday.

Well done him. He made the right call.

At least now they've been told and they can sit and have their silly ideas. Now that he's done that, just say no if you think you can't manage something.

(although I'd have loved afternoon tea yesterday. Breakfast in bed, which was very thoughtful, proved that actually, DH literally can't boil an egg . Can make a mean cup of coffee and buttery toast though)

Oh - and no, you're not being unreasonable or ungrateful. You're having to live within the limits of your condition, which you already pushed for them yesterday.

My sFIL is like that. He knows I have MS, but he says things like "you look fine to me". He's a horrible man anyway, so it's water off a duck's back to me, but dh gets very angry.

All you can do is follow your own needs, so rest if you need to, and let your dh talk to them. There's no shame in being ill, but there is shame in not acknowledging the effects of illness.

They need to actually understand how cfs works and what you need because of it. The only way they'll get it is if dh and/or you both talk about it. They need to be told that exercise doesn't help but makes it worse, and so on; and they heed to hear those things when they happen. So just tell them, like you would tell your best mate. That will also help you with feeling upset, and stop any anger or resentment. Get it out into the open.

Give them your routine, for instance, if you do something in the morning you will need a few hours rest in the afternoon and will need to only do something gentle in the evening. Then they can plan things which take your needs into account.

You need to be realy assertive and not care what they think. They can take the children out with your husband (get their son on his own - lucky them) whilst you stay in bed etc . I'm not ill at all but I always need a good few hours alone every day including on holidays even family holidays. I know what I need and I insist on it and make it happen. Works fine.

Of course YANBU.

This is one of the reasons I HATE HATE HATE that this awful, life changing, disabling condition is called Chronic Fatigue Syndrome. They didn't think it through at all when they came up with that name. It just makes it sound like you're tired. When it is so much more than that.

Sending you hugs and spoons OP

How wonderful to read something on MN about an apparently kind, supportive and intelligent husband.

The mind boggles

It's a horrible illness, you have my sympathy.
Being with close family who don't understand makes it so much harder for you to bare, too. I hope your time there goes more smoothly & that you get the rest that you need; this should be chance for you to improve your health a little as you feel their love & practical support, not to exhaust you & end with you having a disabling flare (although if you do, it may teach them a thing or two!)
I recommend the spoon theory too, it helps me (when I really use it & don't get carried away with chores... )
You are lucky to have your DH, he sounds like a star
Enjoy your time with PIL

So sorry that your MIL has behaved like this, she sounds really ignorant. As others have said your DH sounds like a good guy and I think its a good thing if he tries to drum into their heads how ME works and that you are not just a "bit tired".

I hope you are not feeling too awful today after yesterdays activities.

Daughter ( early 20's) just had diagnosis of CFS/ fibromyalgia.
Any advice from people? . Duration? Occupation? she has suffered with symptoms for nearly 2 yrs.
Thank you

@Frances123456

You might be better off starting a new thread as this one is from 2016 and people may not read it once they see the date.