In all the 17 years I have had my RA I never really felt I was able to talk to anyone who totally understood my predicament. Not even health professionals totally understand, they have a very good idea of course as they have the knowledge but I feel you have to have RA to understand what it's like to live with it day in day out.
I also had counseling many years ago and felt that even they didn't understand , don't get me wrong it helped but not the same as talking to someone who is also a sufferer.
Then I found this site through the NRAS, having been a member for a few years didn't really use the chat forums, I don't know why as the site itself is brilliant and found lots of information that I needed about RA. When I wrote my first blogg just 3 weeks ago I actually cried while typing the words! not because I hadn't come to terms with RA but because I felt it had stolen my ability to be the mum I always wanted to be to my son. These feelings I kept pushing to the back of my mind and I know realize it was the wrong thing to do.
That's why I have written the bloggs I have as it as helped me (and I hope helped some of you) come to terms with things from the past and made me realize I have to make the most of life now whatever happens.
The strange thing is operations and times spent in hospital never bother me,its part of my life and my RA. It was the time's I didn't spend with my son that hurt so much.
Now, I chat on here like never before and so wish I was able to do it years ago how you have all helped me I can never explain or thank you enough.My family are a great support to me but talking to someone else with RA is the key as they totally understand.
Well said to Mand, I'm only a mere baby at RA but it has certainly helped me, I wish I had my Rheum mates in the early days!!!
Here Here! everyone should have rheum mates. x
Yes! Mand like Gina, I am only a baby RAer but have felt so much better for being able to "talk" on here and put into words how you feel, without feel of judgement, without that old look in the eye, ummm well you don't look that bad and you know all that stuff.
Have no regrets Mand, you have your rheum mates now look forward and thanks for all your support too. x
Julie
Talking to someone who understands I think is essential part of having any long term condition. we've had people have tears of joy that they've been chatting with people who understand how they feel at some of the Birmingham NRAS group meetings. I'll never forget the words of my now retired rheumatologist who once told me "the patients are the experts, we just do what we can to try and make things easier"
Everyone has different experiences with RA, and being able to share it with others on places like this or at groups and get togethers certainly makes things easier (and you make some wonderful caring friends from it too!
The 'Mum thing' you mention is how I feel almost everyday. This isn't how I envisaged my life being with two children, infact it's so far removed from what I had in mind it's almost funny!
My daughter was typing up something on the computer about 'My Family' and under the heading Mummy it said "My mummy stays at home or goes to hospital. She sometimes looks after Edward when he’s not at school" it was a bit of an eye opener really.
It is good to talk, as long as the other person is willing to really listen! xx
Hi Jo, that's the thing, kid's say it how it is even if we don't like what we hear sometimes.
While were on here saying how we feel etc, if there is someone who doesn't want to listen to us then they don't have to read and don't have to reply! so at least we know where we stand with each other
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