NRAS
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New here and a carer/wife

Hi my husband has Severe RA and Raynauds. The RA only started 4-5yrs ago and has already got to the point where his right hand is almost useless and the left is well on the way. He also has it in his feet and legs, again the right is slightly worse than the left and in his shoulder. On top of this he also has Ostrich Syndrome, you the one, head in sand I can't see it, don't know about it so it can't happen. Well I think thats at least is in remission if not cured. He had a mini Stroke last week and whist in hospital one of the Rheumy consultants came round with some students. Just before they finished the consultant had the student go through the "at risk of" list. Poor hubby could not put his head in the sand and ignore it any more.

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There are a lot of ostrichs around....but better to be a meerkat and look around you for.

Very sorry that he has that amount of damage in just 5 years, must be a really aggressive and uncontrollable version. That's quite unusual these days with the range of drugs available. I hope he has a good rheumy who is trying everything possible to stop it in it's tracks.

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It is very a aggressive version he has and he's on a lot of very strong drug's for it. His Rheumy is good and he has to see twice a year along with the rheumatology nurse. He also had to go to the physio dept., for quite a while and has all sorts of splints sadly they didn't help. Plus because of his hands he can't use walking aids, stuck between a rock and a hard place really. But on the bright side at least he's now had his eye's opened, just hope his ear's are paying attention too.

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Roll on personalised hovercrafts or some other clever technology to help mobility. Virtual reality fishing perhaps?

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Sounds good to me and he's just about come round from his Techno Phobe. He has trouble with a mouse but touch screen was a brilliant way forward. Now just need to stop him, me and 1,000,000 others tutting and gggggggrrrrrrrrrrrrrrrring. Any Idea's

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First of what a caring lady you are for coming here and trying to find advice for him and support for you. We will always be here for you darling so if you want to rant and cry feel free to do it here. I am afraid i have never heard of this so am unable to answer your problem,but i am sure someone is.xxxx

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Thank you. Thank-fully got past the crying stage, the ranting doesn't seem to do an good either. Still suffering from biting my tongue at times and as I'm a bit deaf can switch off the hearing aids when he's having a strop about not being able to do this or that. He was from a child very sporty playing football until he was 30ish, golf, snooker, pool, darts and had even run 3 marathon's. Sadly he can't do these any more not even the fishing he liked to do. So I can understand some of his anger at himself and the RA and now for the time being at least he's not allowed to drive. The driving bit he finds very annoying, good job I can drive and turn the hearing aids off.

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I can clearly understand where he is coming from as i struggle with not being able to do things,but i do them anyway and then not only do i suffer,but my loving hubby gets a bit cross with me because he knows i will suffer.I am suffering this morning from doing some work of the garden yesterday.The mistake i made yesterday was lifting a pot from the front round to the back. He did put it back when he came back from the allotment. So yes i understand where your hubby is coming from. Like your hubby i have a lovely caring man/woman(in your case) partner in our life so tell him from he is lucky to have you and you can show him my post.xxxxx

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Hi and welcome :) Sorry to hear about your Hubby’s poor state of health, hope he gets some relief soon. Ummm, the “Ostrich Syndrome” - I’ve lost count of how many female friends of mine have complained about their husbands having to practically be at death’s door before seeing a doctor. Thanks for naming it so delightfully, I shall use your phrase with great glee :) cheers Deb

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I like the name! You are obviously fighting on your husband's behalf and I hope that he will learn to accept the inevitable and fight too - but it's a hard lesson. best of luck to both of you!

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He doesn't like to accept things but is a fighter.

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In spite of today’s range of modern DMARDs, an aggressive type of RA is still difficult to control.

Mine is in that group although had been apparently damped down for a few months.

I cannot depend on a stick or walker either as gripping is not an option. Fortunately, most of the time, when not in a flare, my legs are okay.

I was first attacked by RA almost three years ago. I can do only a fraction of what used to be normal for me.

Instead of being an ostrich, I went online to find out as much as I could. It is a terrible illness to accept.

No patient’s condition and risk factors should be discussed in front of them, as happened with those students, unless the patient already knows what they are, and the patient has consented to the discussion happening in his presence.

We all handle bad news and sudden disability in our own way, not wishing to lose our health and ability to be useful and active, and needing time to come to terms with each new blow as the disease literally eats us.

Grief is not over, as it is when death tears a person from us. We grieve for each new little thing we lose as time goes on. Acceptance is therefore also not ‘done’, for the person with RA or their loyal, loving supporters.

Either one might at any time feel they want to run away!

That’s reality with RD.

This is a good site to vent, as you have sensibly done.

You are not alone. :-)

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Hubby had given consent to the specialist regarding the students and it was what he needed to hear for his own health. It also helps the students, our future Dr's and specialist's to see some-one that they may only come across a few times in their working life. So is therefore beneficial to other patient's going through the same the same rare condition. We just get on with thing's as best we can and try and find other ways to solve some of the issue's that crop up. We both use to be chef's so cooking can be a bit fun at time's, he can't open packets, jars and so on so I do that. We work things out as we go along. We never give up on anything as there is usually a way around things and at least in looking for ways and means it helps a bit with keeping the old grey matter active.

Grief to me is part of life no matter what the reason, the loss of elderly parent's to the most traumatic of a new born. It never goes away you get use to it so to speak and learn to go on.

Life is full of challenges that we learn from, hopefully and RA is just one of those challenges to learn from and find ways of dealing and coping with it. X

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That’s good to know!

Most of us, most of the time, do just the same; carry on going, appreciating what we can still do while letting go of what we cannot do.

Sounds like you two are a good team! Well done.

So sorry about the trauma you mention. x

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Your great such lovely view of life. I've got one at home just like that without RA but flu sends him to bed for a week with the tv control although golf is something he's never to ill to play ! However I go with him to the Heart Consultant as although no heart attack he has a congenital heart defect. And he tells fibs about he's never short of breath etc ! Don't you just love them ? xxx I'd add that for me RA is no big deal and the NHS is wonderful in providing good working medications.

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I think Ostrich Syndrome is a problem that mainly affects men. I've come across lot's of men with it but very few women. x

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Lol. I’m a man (there are a few of us on here, honest😉). And yes, call it what you like, ostrich syndrome, I’m a big alpha male I can’t be ill! ...or whatever. I’ve got to agree. It’s the hormones you know, us blokes have them too😂. I’ve had RA for about 7 years now and I was the same sport wise, maybe not quite as active, never ran a marathon. And I’m one of the lucky ones as mine is in remission thanks to the drugs. So I am still able to walk and play golf. So wish him luck from me. Keep fighting. He’s very lucky to have such an understanding wife.

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Lol. Yep know all about you blokes and your hormones. Grew up slap bang in the middle of 8 brother's all close in age. Talk about the clash of the Titan's, the film was nothing compared to them.

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Ok... This disease feeds off of animal, sugar & gmo's! Dont just rely on medication!! YOU MUST CHANGE YOUR DIET! PUT HUBBY ON A DETOX.. GREEN JUICING FOR 10-30 DAYS!Guarantee you will see results. he needs to then only eat some fish(wild caught). veggies & fruit... a gallon of water every day! I PROMISE YOU THIS WORKS!

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Thank's for your concern and advice, he's changed his diet a bit and he already drink's a lot of water. Hubby on a detox, green juice for up to a month, no chance of that. As for the rest, let's just say I don't think you and he would see eye to eye some how. But again thank's for your concern and advice. x

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