Coeliac & been gluten poisoned, desperately ill for weeks now & literally losing will to live - need hand holding :::::((((

[SickTiredDesperate]

Just that really Am so fucking scrupulous with my diet but was glutened in late October by an incorrectly labelled fish pie thing from one of the major online grocers and health just destroyed. Have been really really strong in dealing with it but straw thats just broken my back of coping is too weak to go to GP this morning (GP has been monitering me every 2 weeks and treating symptoms as is literally NO cure for gluten ingestion if have Coealic, you just have to ride it out).

Waiting for her to now call me instead but struggling with the reality of fact that too weak and bones too painful to even manage 5min drive to surgery. I didn't expect to be 'well' yet as villi (bits in your stomach that absoeb nutrients when eat) take 3 months to grow back after automatic destruction if gluten ingested but never in my wildest nitemares did I expect to be so ill and for so long

I'm also really struggling to cope with the rage at reality of fact that this did not need to happen - someone's sodding incompetence caused labelling failure and in turn that caused this. And this is horrific and has cost me and DC so so much and they are getting really stressed about me being so ill which in turn is making me feel guuilty and impotent yet there is literally NOTHING I can do, have not remotely been 'present' for them and they've had to witness some truly awful things (vomit and blood - vomming and ongoing retching so violent that it tore my esophagus, hence the blood - caked over walls of house until I could get specialist in to clean it; me unable eat; me unable 'do' Christams for them), list is sodding endless.

Probably the single worst thing (although it's just been and remains shit all over, esp re impact on DC) is it was my birthday very early this week, was a big milestone birthday and had a massive party planned on Sat/New Years Eve planned that had to just cancel and know I will never ever get back.

I just need hand holding right now and any long term recovery stories of hope as how I feel right now is what CFS/ME look like iykwim and I'm starting to get v v scared have tumbled into that and won't ever fully recover.

Have only ever been glutened once previously in 14 years since diagosnis and what I gather from specialists is that each time you're glutened it does get worse, so am hanging onto that for hope.

Am just so angry, so tired and weak, so nauseous, in such pain from gluten induced arthralgia that am heading to breaking point as I genuinely don't know how much more or longer I can take this.

Not even sure why posting other than I need an outlet and also how I feel right now is what CFS/ME look like iykwim, and I'm starting to get v v scared have tumbled into that and won't ever fully recover.

Bless you for still being here and checking in Never ceases to amaze me what a difference even virtual support offers, MN'er rock IMHO!

Am quietly but cautiously certain small improvements are happening, my biggest goal (though I appreciate it may sound tragic to anyone who's never been there) is to have a bath this evening.

Feels so fucking daunting though so I'm trying to 're-frame' it in my head from something I'm scared I can't manage to instead trying to visualise relaxing into it IYKWIM. 15 year old has offered to run it for me when I'm ready and use the gorgeous Clarins shower & bath liquid so room will be beautifully scented.

So right now that is what I am doing, imagining it feeling luxurious and the lovely freshness I will feel if I can do it, as opposed to what is a very hard to describe sense of just 'hurdles' between me and it (no clue if that will make sense to anyone else but am hoping it works for me!)

Thank you again, it's lovely to come on here and see that people have bothered to post. Bloody stars

I'm still here too, I'm sure lots of us are . Reframing can be a really effective technique. Apologies if this is patronising but it's worth reframing it two ways- the first is as you have done, how lovely the bath and its effects will be. The second is to thinl that if it happens that you can't do it, that is fine too and just contemplating it is a great start, have a wash with wipes and a sniff of the bath stuff and know that it will be there when you are ready.

Your DC sound so lovely .

I can relate so much to how enormously daunting a bath or something can feel. It's impossible to imagine doing normal things again without planning.

But that what recovery was like in my experience. Testing to see if you are well enough to to take a tiny step forward. Trying to enjoy it if you could and reassure yourself its OK if it isn't possible today. It will be soon.

Hope it's been the former x

It was the former

Cannot tell you how nice it feels to be properly clean, wipes are great but clearly not remotely the same as a proper bath. Was utterly wiped afterwards though I'm not surprised by that, I fell onto bed and didn't wake until 2.30 this afternoon then back in bed at 6pm for another 4 hours.

Bath triumph now matched by an eating triumph, I've just eaten a (very small!) piece of cod and 4 new potatoes - first proper 'meal'! Which pretty good as have lost a further 6lbs in last week alone. Nausea is unquestionably improved, is no way could have even contemplated what just ate for most of the past 10 weeks or so, literally the idea of any food would just exacerbate nausea so to have both wanted it and been able to eat it is bloody amazing. Small steps but actually huge in overall schema of things.

Thank you again for still being here, it's hard to explain how very lovely it feels so thank you

yay! how brilliant that you could enjoy your bath AND have a proper meal

That is such good news - small incremental steps add up to progress. You ARE making progress with this

Thinking of you xx

Just came back here to check for an update and am so happy to see it!
Great progress and another MNer cheerleader here for you (those are pom poms)

Huzzah! Well done you!

Reminds me of when I had pneumonia-my mother had to come and nurse me, and my day went like this;

1. Wake up due to severity of coughing. Hideous phlegm ejections.
2. Cup of tea brought to me in bed.
3. Sleep to recover from effort of drinking tea.
4. Bump downstairs on bottom to have breakfast.
5. Back to bed to recover from effort of having breakfast.
6. Wake up again, have shower.
7. Yep, you guessed it, back to bed to recover from effort of having shower.
8. Wake up again, dress.
9. Bump downstairs on bottom to lie on sofa.

10. Spend whole day on sofa watching telly and sleeping, failing to eat lunch as too tired/no appetite. 11. Stagger to dining table for dinner. 12. Straight to bed for another night of sleeping propped up, waking myself up coughing, hideous phlegm ejections etc in rotation.

That's fabulous news. And the eating too. Two milestones.
Keep doing what you're doingand you'll get there. You are doing magnificently. So much strength and fortitude

So good to read your update and see that you're making progress.

I'm so glad you're making steps in the right direction

Great news OP. I have been wondering how you are doing and really glad to hear there have been some improvements. Hope they continue.

Hello

Sorry I've been quiet but it's been a very rough few days since last posted, immense and just overwhelming fatigue and the arthralgia pain worsened again after improving a bit. am trying to just see it as the ups and downs of getting better but psychologically it's feeling very very hard right now.

I'll keep on checking in and am grateful to those of you still here and posting

I'm so sorry to hear you've had a dip in your recovery. It really does suck when things seem to nose dive when you've made such progress.

A good trick for riding out the dips is the mantras 'this too shall pass' 'all shall be well' etc. Something that makes sense to you.

Try meditation and try not to let your mind race away with you and maybe try to focus on anything that gives you some pleasure, even focusing on soft sheets, a nice card from a friend, anything pleasant you can smell or see. Can you tolerate music or the radio?

Things will change again . Thinking of you and wishing you well.

Have been thinking of you too

Bless you

How's today?

Mummy, user and sick and tired your posts have been so helpful.

I'm having my own little health crisis. On Tuesday 18 th I woke up with a pain in my back, windy , bloating etc.
Awful day. Had to go to a funeral too.

I'd had a sample in at the doctors as I thought I'd had a tummy bug only to be told I was infection free so I asked for an appointment to see the doctor. It's a new doctor to our practice, actually a retired doctor from another practice that I'd always heard good reports about so despite mbarely being able to scrape myself off the bed I jumped at the chance.

He was lovely, sharp as a tack. Gave him a potted history and he said he would order a blood test on kidney s, liver and gluten. I asked him if he had any dietary advice for me and he chuckled and said I probably knew more about that than him which I felt was giving me a he green light to carry on . I'd told him I'd cut out sugar, dairy and gluten , didn't smoke or usemuch alcohol.

The next day I was much better. Pain gone etc. Went for blood test and waiting for results.

Stuck to my eating plan religiously.

So am just waiting to see where we go from here.
One worrying thing is just how tired I am, despite getting a reasonable amount of sleep. So that's the next thing to look at.

Hope you are continuing to make progress standd

I'm going to put your quote here mummyslittedragon
How do you use dousing? Can you use this to see if you would benefit from or can assimilate a remedy you find on the internet? From a picture I mean. As long as I'm in balance, I can usually do it by concentrating on it. I can't always tell. When my body needs something or a remedy that I've already taken, I get the taste in my mouth. I didn't know I could do this for quite a while. I was too ill. It's obviously not an exact science. Or even a science. I just noticed one day I could do it. It's a bit odd really.

I think it's marvellous what you are doing . I would say you are deviceless dowsing. Something I haven't mastered myself as yet . Yes I use dowsing to check on supplements, whether eating a certain food would be detrimental that kind of thing.

I love how some of you mnetters are medically trained. I wish I was . It must help you a lot.

I'm still checking in with a hand to hold if you need it. If it's not helpful then please don't waste precious energy updating.

I posted under a previous name but wanted to check in and send my support. I hope things have improved for you and that you are slowly on the mend. Please don't feel that you have to reply (you need to save your energy :)) but I wanted you to know that a stranger is wishing you well.

And another stranger who was been thinking of you.

still thinking of you xx