NRAS
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Not waving drowning

HI I was diagnosed with RD July 2016 and I am slowly realising that this has changed my life and how I see myself beyond recognition and I am struggling to accept that the RD affects every area of my life. Physical mental emotional I suppose I am posting today because I feel low and bewildered I am 60 and I feel I don't know who I am anymore I feel I am just a list of symptoms are they all due to RD or are they something else I should be worried about I am on sulphazalazine 5 tablets a day was o Mrs for 3 months but recurrent chest infections. Reading the forum has been helpful as I do find answers or points of similarity I do t have much swelling but pain dry eyes dry mouth through night need both knees replaced am struggling with more recurrent chest infections 5 visits yo Gpsince 29 December sweat and overheat when just sitting in chair never mind moving about embarrassing when out hair looks wet even on very cold days when I have been in supermarket. Constant pain . Reading forum I know that this is felt by many of us and I admire the fortitude that all of you show I know how hard it is to try and remain positive and I know that the struggle is very real I am feeling very down today but I know I will come back up again and just writing this post is helping so to all of you on this site I wish you a better dayx

17 Replies
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Gentle hugs x

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I understand completely. I was diagnosed Nov 16 and was 60 in January. I am on a cocktail of meds probably as you. I seem to have no reserve in energy or emotionally. I cry at the slightest thing and dont know who I am anymore after having a demanding career of various type. Anyway enough of me, all I can say is I understand and hope and pray things improve for us both and everyone else. Be kind to yourself and take care.

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I feel some sympathy for you but you really need to talk to your consultant as very few people feel like that most do well on medications so perhaps this is not the one for you. Please ring your RA helpline or better still the NRAS helpline for advice. I've had RA for years now and feel great. The odd blip but not just fine really. So there is help and your first port of call is your RA professional advisor. And the chest infections might not be the RA ask for sputum tests to see if the antibiotics have worked as well as whilst RA does make people more liable for infections there are some weird bugs these days which are antibiotic resistant.

Please don't give up as RA can be treated and its worth telling the consultant how you feel and trying something else as with this condition there is no one size fits all treatment. I had 2 before getting a good one for me.

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lots of hugs xx -

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I agree with Medway lady- please speak with your consultant as I’m sure other meds and interventions can occur which will help.

I too have a very aggressive RA- both hips, both knees replaced. Waiting fir elbows to be replaced, operations on toes and feet and whilst there are times I can feel just like you do- it’s no longer the norm.

I’m glad you found us, it’s a great site to be heard, held and supported. Wishing you the very best going forward .

Marie

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I feel for you ,honestly .I was diagnosed with Psoriatic arthritis last March although I've suffered pain most of my life off and on ,well since teenage years anyway .Things settled or I was too busy raising children and holding down multiple jobs to even notice. After menopause which wasn't really noticeable ,thank goodness my pain worsened and I had to give up work ,hence the diagnosis .I know how scary the realisation of it can be and how depressing it can be but I always see someone worse off and think ,c,mon don't let it beat you .Take every inch of positivity and channel it into making the best of a bad situation😏I find myself laughing out loud at myself trying to get out of the bath or trying to put socks on 😂😂😂hope your mood lifts soon means take each day as it comes 😉

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I get were your coming from I’m in that same boat I’m in a huge flare at the minute waiting for my abecept to get delivered was on benepali no good didn’t work , I near cried at Tesco check out on Thursday thought I would do the scan shop so I wouldn’t have to load it on then of into bags , I was yeah this is great just scan pop into your bags it was my first time but as a first timer they have to scan a few bits this young lad said the peppers hadn’t go through they did by the way. So it had to be all unpacked and put through the check out , I was close to tears 😭 I was in pain , I tipped the bags on I was fumming , poor check out girl just looked at me I came home and literally cried to the hubby I know how much pain your in my flare is bad at the minute can’t hover mop or basically anythink because if I do the pain is horrible, I couldn’t open my mate when I woke up,my feet ankles my knees are the worst all swollen just try and keep your chin up. Take it easy .

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Oh you poor thing! They make you feel like a thief with that scanner, don't they? Take care x

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Hope you feel better anyway my scanner incident sent me over..

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I agree about finding the positive and there is always someone worse. Dont kno about you but i feel i can cope with the pain its the weepiness and lack of being able to cope. Well as i know many of us in this position and ive always said to my children if you cant change it then change your attitude towards it. Im a work in progress just getting to know myself like you mjfoster. Regards to you all . Ruth 1234 Take care ☺

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I'm glad that telling us helped you feel a little better. We are always here x

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Well said, mjfoster, well said . . . 🙏 😌

Yes indeed, no aspect of life is spared. 😳 😯 🤯

We learn to persevere 😌 , laugh 😄 & cry 😢 . . .

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Thank you for:

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Not Waving 👋 🙋‍♀️ but Drowning 🌊😶 ( poetryfoundation.org/poems/... )

Stevie Smith, 1902 - 1971

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Nobody heard him, the dead man,

But still he lay moaning:

I was much further out than you thought

And not waving but drowning.

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Poor chap, he always loved larking

And now he’s dead

It must have been too cold for him his heart gave way,

They said.

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Oh, no no no, it was too cold always

(Still the dead one lay moaning)

I was much too far out all my life

And not waving but drowning.

__________________________________

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Now, to maybe bring you a smile, mjfoster, is Zarathustra singing: healthunlocked.com/nras/pos...

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"And now [speaking of drowning ] for something completely different . . . ":

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The joys of utter ‘denial’ . . . or perhaps the "the eternal sunshine of the spotless mind . . . " ☺️( poetryfoundation.org/poems/... ) ?

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If interested in attempting to keep head 😯 bobbing above water 🌊 , thoughts (links) just shared with Jasonteddancer ( healthunlocked.com/nras/pos... ) might strike a chord 🎵? 🤔

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Wishing you the very best, dear lady. 😌 🙏 🍀 🌺 🌞

.

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I'm so sorry you're feeling like this at the moment and you're not alone. I'm not too sure who I am these days either but I'm sure things will look better when we get some sunshine and warmth again. Wishing you better

J

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Thank you all for your support and encouragement yesterday was a very bad day I had felt I was coping well on Friday but some up in the early hours of Saturday and the cloud came down on me today I am feeling more hopeful. And I am going to phone my rheumy nurse helpline tomorrow as a first step at being more in control of my condition gentle hugs for allxxx

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Im so pleased to hear that mjfoster. Let us know how you get on please. ☺

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It's so not easy this condition ,one minute your crying other times your laughing .My feet were so sore the other morning as I went to descend the stairs,I suddenly thought of doing a big wee down the stairs,as in the advert 😂😂then stopped my self had a good old chuckle at the heap that would end up at the bottom with some bruising ,not recommended.So I came down on my rear one stair at a time,safest way probably 😉hope this thought cheered you all up 😁😁

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It certainly made me chuckle Thank you xx

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