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I have ME, pils don't believe in it AIBU to ask them to stay away until I'm better

(64 Posts)
SunsetMojito Thu 11-Apr-13 15:12:22

I've bed bedbound for 5 months, housebound for 9 months, now leading a limited life with lots of rests. But still very weak and poorly.
pils have kindly helped with the dcs one day per week for a year (except for some long holidays of theirs) which I am very grateful for.

Unfortunately they don't believe I am as ill as I 'make out'. They have told me to pull myself together, just go for a long walk and other things that have indicated that if I just tried harder I'd be better. Sadly dd overheard them saying they don't believe I can't even get to some gardens and has been very very upset which I've found heartbreaking as its hard enough for her having a poorly mum anyway.

I've got to a point where I couldn't cope with the stress and that the cost was too much to bear in terms of making my illness worse.
Dh and pils had a huge row where they let rip all their views about the illness being imaginary and they weren't prepared to 'play the imaginary game' (their words) any more. they aren't prepared to see me any more but want to see the dcs. Dh says that we come as a family and they can't pick and choose.

But even if they opt to see all of us, and I really don't want to come between dh and his family (and I hate family rifts), I feel as though I just can't face seeing them until I'm stronger. I may well be being oversensitive as its been such an awful time and I feel quite battered by it all and obviously I've lost a lot - freedom, job, financial security and quite a lot of dignity along the way.

AIBU to cause all this upset by not being able to cope with seeing them until I'm better?

SofiaAmes Mon 15-Apr-13 09:42:58

Have you explored Functional Mitochondrial Disease as an explanation/cause of your symptoms. High doses of L-carniitine and CoQ10 could possibly alleviate or eliminate some or all of the symptoms. This treatment has turned my very sick child who could sleep 16 - 22 hours a day when he had a cold, into a strapping healthy young man. Here is a website with lots of information:

SofiaAmes Mon 15-Apr-13 09:44:03

Oh sorry, didn't do the link right. Here it is again.

MrsMangelFanciedPaulRobinson Mon 15-Apr-13 10:05:51

Oh my word they sound awful! I'd totally cut them off!

Soupa Mon 15-Apr-13 11:20:09

Hope they try and make this better. You must do whatever suits you most.

Hope you improve soon too, I had ME and when I recovered suddenly and fully it was incredible. Had one relapse but have been clear for years... your turn nextsmile

CrapBag Mon 15-Apr-13 11:25:56

Done CFSKate. Good to see ME is at the top with votes.

formicaqueen Mon 15-Apr-13 12:50:05

on a totally different line of thought, have you googled gluten/diet and ME?

Formica my dSIL has ME and finds a reduced gluten/dairy diet helps hugely.

OP my parents are sceptical of dSIL's condition but have never, never expressed any opinion to her, and have helped on occasion (live far apart).

They did say something once and I made a comment along the lines of "well the Social Welfare people believe she has it or she wouldn't be on disability, plus several doctors believe her, where's your medical degree?" and they haven't commented to me since (prob out of fear of getting their noses bitten again rather than understanding)!

If your DH is explaining things to your PIL's and they are still behaving like shits, then I think it is time to pull back massively. If they can be that toxic to you, you don't want them round the DC's - imagine if one of them had an invisible condition that PIL's didn't 'believe'' in? (God forbid they should, of course)

I mean God forbid they should have a condition, not God forbid the PIL's wouldn't believe in it!

shouldkeepquiet Mon 15-Apr-13 13:58:30

My wife has had CFS and Fibromyalgia for 17 years. The biggest trigger for her to have relapse is stress. She has gradualy got to the point where she is now working 3 mornings a week in a school but has to try and avoid getting wound up or angry at all costs as it sets her back massively. With this in mind i would suggest you avoid you PIL for as long as possible - forever maybe - as it is making you worse.

CleopatrasAsp Mon 15-Apr-13 19:47:57

shouldkeepquiet if your wife is so severely affected by stress has she had her cortisol levels checked?

shouldkeepquiet Mon 15-Apr-13 21:07:00

Hello Cleo,
No i'm fairly sure she hasn't. She gave up on doctors and test after being told there was nothing wrong with her for years. She has been taking a lot of different pils for the last couple of years and it seems to be working.

CleopatrasAsp Mon 15-Apr-13 23:56:24

That's great that she's feeling better. I have had ME/CFS for over 20 years and kept well away from doctors but a few years ago I had to have a routine blood test and it was discovered I can't produce cortisol (the anti-stress hormone). They reckon I have probably been like this for years and this is why I also have ME as it thrives in a stressed out body. There has been lots of research recently linking problems with the endocrine system and ME, so it's worth considering.

OhLori Tue 16-Apr-13 09:51:44

Sounds awful sad. One option - let them stew in it for a while. Meanwhile, just "use" them for childcare if you need to and keep your distance, especially emotional.

Another alternative is to have a long talk with them yourself quietly, not an argument IYKWIM. Just tell them you are really sick physically and it is a struggle and to be told that its imaginery is very upsetting as well as being untrue. Their response is irrelevant (hopefully they won't say much) as the main purpose is for you to get how you feel across - if you are forthright and sincere it may help the situation a bit. Though of course no guarantees.

CFSKate Tue 30-Apr-13 22:43:08

There is just over an hour left to vote, please if you can ask anyone else to vote please do so, a handful of votes could make all the difference, we are in 1st place, but only just.

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