Just another quick post whilst on a role! As you all know RA comes with a plethora of problems not only physically but also effects us emotionally too. It would take a very strong person to take this journey into the unknown completely unscaved by the RA experience. When im feeling at a low ebb i bring my attention to my 5 year old niece. A beautiful, fun loving gregarious little girl who was diagnosed recently with Juvenille Artheritis. Her little fingers and toes are swollen that even walking causes her pain, but if that s not horrible enough her sight is becoming progressively worse too, She has to go under anaesthetic to have her steroid injections administered and steroid drops administered in her eyes regularly . And to add to that her new medication could cause hair loss too. But she's a happy, cheerful little thing, so when I feel demoralised, angry, sad or indifferent I think of my beautiful little niece who s only 5! It soon awakens my feelings of self-pity!!
Self-pity awakening when I think of my 5 year old niece. - NRAS
Self-pity awakening when I think of my 5 year old niece.
Children have no expectation of what is the norm......so they cope much better than us adults who quite naturally fret & think why me?
Let's hope as your little niece grows up research comes on by leaps & bounds & new remedies are found to help her grow up without too much pain & discomfort.
I have a cousin who slowly lost her sight,& went blind by 17.....but she went to university & is now a concert pianist who also teaches blind children.
All those years ago we never thought she would have such a filfilled life.
Yes agreed, I do believe research will have found a cure for RA especially in her life time.. Wow! what a remarkable lady, she undoubtedly has an amazing spirit and a strong healthy attitude, as well as an unbelievable talent.
Yes she was a remarkable child, & now young woman....but what was also so heart warming was that when her sight first start failing all her school friends were so supportive.....they constantly made suggestions to make life easier for her.....right down to having a roster as to who would walk with her to & from the school bus every day.
Of course she has remarkable parents too....they just let her take the lead ....whereas a lot of parents would have been too over protective & driven her crazy trying to take over!
Wow! That is so lovely that her friends even at such a young age were full of humanity.
Have you been watching that programme about 4 & 5 year olds on TV? There is always one kind little soul who seems wise beyond his/her years.... who tries to help the less able isn’t there?
But of course there is also the selfish little brat we would all want to
...well I won’t say what!!!
What a little star!! God bless. ❤️❤️
🤗🌷
Poor little girl. Let's hope a cure may be found very soon. It is worth remembering that her suffering does not diminish anyone else's. We each have a burden to carry
Ah, Gnarli, well said.
I think you and Gnarli have misconstued my message here! I'm not trying to quantify one's personal journey with living with RA, I'm sure you both have your own agenda on how difficult your journey is, however I was just trying to convey my own narrative living with RA. For me personally when I feel sad and sorry for myself I think of my year neice coping with the debilitating effects of RA so young!!
Oh of course I agree, however I was diagnosed at 55 not 5. I have had every opportunity to fulfil my dreams, i have had four children, and been fortunate enough to be able to focus on my career as a psychotherapist and studied hard to get my degrees without any health problems! I was only expressing that I can't imagine having being diagnosed so young! I do believe had i been that this may have hindered my path! From what I have personally experienced from RA ( at my worst) I've been through a tough journey emotionally and physically and even with my maturity i have found it demanding, demoralizing debilitating and tough! And thankfully iI did not have to experience that as a 5 year old!
I had no intention if decrying your niece's pain and suffering and if you saw it that way I can only apologise. Having been diagnosed with a congenital illness at 2 I am only too aware of the problems with ill health can bring a child.
Gosh I'm so sorry to hear that Gnarli! Some times with messaging you can easily misconstrueu your true intentions and meanings, it omits how you are feeling/thinking it does not express signs of/body language and facial expressions! I was only trying to convey that at 55 years of age I am lucky to have been diagnosed so much later in life!
I appreciate your sentiments. I'm sure your niece will come good with the loving support of her supportive family.
For sure! we all love and adore her, she s the happiest beautiful little girl who has no understanding or conept of her condition and what it may entail as she gets older! She is however aware of her pain but she continually shows such huge strengh. Thank you for your reply though and expressing your feelings.
tough reading this post for me!`
Yes always tough when it's such a young child suffering.
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