Thank you everyone for all your positive comments. I want you all to know I do live my life to the full, sometimes too full 😂 and I am a very busy person. I am not a morose person and that’s why I came on here to ask the question so that I wasn’t putting it on my family and friends. I have had ra for over 11 years and never had these thoughts before and there are possibly lots of reasons as to why now. Your comments have helped me a great deal, I also think as many of you will, that the disease is named wrong as people hear the word arthritis and say oh it’s just a touch of arthritis and don’t understand the autoimmune part so when we put the makeup on and smile they don’t get the pain and tiredness we are in. I push myself and possibly too much at times so that no one knows and for me to show weakness is huge this is also why I have come on here. Thank you all very much and I hope I can help you all one day. I am also an ex nurse and you know we all think far too much 😂😂. Headache is a brain tumour etc. Take care everyone. X
Re dying : Thank you everyone for all your positive... - NRAS
Re dying
A lot of people, including professionals, are now calling it Rheumatoid Disease. Apart from anything else it stops the 'oh, I have a touch of that in my finger' type comments. You know, the comments that make you want to scream
J
Exactly. I’m fed up with the oh why are you complaining we all get arthritis.
No we don’t all get RA and I’m now going to call it RD. or when people say you can’t be tired you don’t work!! I would love to work but my line of work no one wants me as I’m unreliable due to this disease.
I've called it RD a long time now, many here do, RA Warrior does, my Rheumy team too. It makes a difference.
NRAS doesn't though. Maybe they should X
I don't usually bother to try to explain. I have far too many fun things to do and, to be honest, there's no cure for stupidity
oh yes.........ad nauseam.........wish I could just let that scream escape .... just the once. LOL
I’m wondering if anyone on here has tried this one and CBD cannibus oil
I’m in so much pain waiting for the Lefludomide to kick in I’m thinking of trying it
My consultant said some of his patients are trying that and Tumeric but said there hadn’t been proof it works I’m worn out with pain and struggling,with my mobility I’m going to have a go
Hugs to fellow to fellow sufferers
I haven’t but my friend who has lupus and fibromyalgia has and she feels marvellous xx
If you search for my previous posts you will see that I have been on CBD for a while now. I think it is wonderful.
Thelma
Gasi, I so understand. Im a bit behind you in time with RD, but im older than you, 60. Im determined to be positive put the lipstick on and smile, all things that help. I do over do it but its who I am. I also have very close relatives and friends that are terminally ill at the moment, ageing from 33 to 70. Lost my dad last year and almost lost my daughter in childbirth, but thank God didnt. Plus other things to cause emotional stress etc etc. It seems many people on here push themselves and are positive. RD is challenging, life is challenging and this forum helps and all I can say people on here 'get it' whatever 'it' is depending on individual circumstances. Life for me, and it seems for you is better than for others we know and have lost/ loosing. So im doing my best to get the best I can out of life as it is and not look too far into the future.
I am in Aviemore at a harley biker meet this weekend, such fun. Very much had my wings clipped due to RD, no riding or up till the early hours any more. Wacked after listening to fab music and a couple of glasses of wine, which I rarely do.
Mmmmm that was a ramble. Sorry. Have a good day and enjoy it. 🙂
The comments oh my fingers stiff or my backs twinging does get my goat up if only people knew the amount of pain and fatigue we get, if people ask me now I just tell them I've got rheumatoid disease or an autoimmune disease ask I'm to tired to keep correcting people and should just carry a tape recorder round with me ha ha xxx
Exactly. X
I must say, I don't like saying the word 'Disease'. I completely understand the reasoning behind it but it makes me cringe. Just one of they words. I do say it on here and respect others who prefer it to arthritis but face to face with people I say I have Rheumatoid, an autoimmune disorder. No need to mention arthritis at all. In fairness to people who don't have this condition, it's not really their fault. No one can expect everyone to know what it all means. I worked in the NHS too for many years and didn't know as much about Rheumatoid as I do now. There are so many health conditions to have deep knowledge of them all. Even GP'S refer to textbooks now and again! Have a fantabulous holiday Gasi ! Well jealous! 😁 Xx
Anyone that truly cared and/or had our interests at heart would read up on Rheumatoid Arthritis anyway! After all, the information is at our fingertips nowadays and we are popping pills everyday! Well I am. My step sister STILL thinks it's wear and tear! Spends plenty time on social media though! My mum is in the early stages of dementia. I made sure I gained more knowledge than I already knew about her condition so I can understand and help her in the best possible way! Ignorance is bliss to some people.
Bless you.It helps to talk to others thou doesn't it.Some people just don't understand and others are too blind too see your pain and struggle. Yes they just see your smile you try to give them.
Thank you so much. I just wanted to come in here and feel I could say things that I wouldn’t say to my family. Some of it had been taken out of context on here as if I am morose xx
I am sure you are not.anyway bet we all are at times.people will say they are positive when maybe behind the screen they're not.
You sound like a lovely person.I wouldn't be brave enough to put how I feel at times but I was telling my sister your story and blurted out dark places and things I have felt like. She was shocked.we are all different
I feel so sorry for people who feel afraid or not brave enough to express their feelings. It actually angers me that a thought of fear should cross their minds. For any person who comes across as unsympathetic there will be 10 people who will be sympathetic. Don't be trapped inside your own body for fear of judgement. No one has died and made anyone GOD! Freedom of speech and all that and RESPECT means everything! Rant over!
That's certainly not me trapped for fear of judgement. I think I care too much about people to burden them. I am more a listener
Oh my goodness I think we are all different and do things differently and just because people don’t want to share doesn’t meant they have fear and even if they do that’s up to them. A bit harsh
I think you may have taken my words out of context. Many people have difficulty in expressing their feelings especially regarding this disease and alot of that is due to misunderstanding of the condition. That is why people often feel isolated. I think you stated yourself that you were 'fed up' of people unintentionally undermining the symptoms of Rheumatoid Disease. Again, Yes I DO feel sorry for people who feel and say ' what's the point' in saying how I feel because they don't understand. I welcome open expression. It alleviates a lot of stress. Here - there is no need to feel a burden to anyone and no one is going to say ' It's just arthritis, I have it too!' which is great! 😄 X
I was furious with this young physio I have been sent to for my knee. Long story but I fell and direct impact on my knee joint. Felt both knees and said my pain was heightend because the other knee hurt when he touched it. I snapped at him no not when you touch it but when you press it and i think that would be obvious when I had RA and osteo in it. I am having words with hydro physio tomorrow and asking her advice again about cancelling the other physio. She was not happy with my last consult with him.
I know exactly what u mean about putting on a brave face. I do the same pushing myself to the point of exhaustion for the family's benefit as they just don't realise.my touch of arthritis runs deeper than just that. However can't expect them to understand.
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