Ok I have Juvenile arthritis since 15 months old, nothing like the older persons type which is wear over time on cartilage, this is an immune system fault where the immune system attacks every thing in a body, every joint can get eaten and sometimes organs are affected. I had a hip replacement at 12 but many other ops before that, took my A level exams and uni finals in hospital hitched to an IV of morphine after my latest replacement surgery each time.
I have limited mobility and deformed joints and have annual surgery. I have been on chemo type medication injections since I was 8 years old.
I have a toddler boy who is healthy and my joy. He is a bright little man, so proud of him.
I don't know what it is to run, sit on a sandy beach and build sand castles, walk up a hill and see a view or sit in fields with grass under you in the summer. I therefore don't miss these things like perhaps adults who get illness later in life do. I feel so sorry for adults who suddenly develop disabilities later in life because you can see pain all over their faces whilst their bodies learn to adapt to pain and anxiety on them whilst they work out how they will adapt etc.
I don't bother being down with my arthritis because that doesn't draw people in my experience, in fact it is quite normal for people who are well to shy away because really what can they say, they don't know what to say to make it better and really nothing can be said to change things so I smile and happily enjoy what I can in life. This seems a positive way to deal with things to me. It had worked for me in many ways but at times when am very ill it can be a little isolating as I don't want friends to see me having to be wheeled on a commode to the toilet which is what happens for quite a while after surgery both in and out of hospital.
I have good friends, all healthy and most athletic who often forget I am unwell despite clear visual cues of wheelchair and wonky hands etc but I love them when they say hey let's all go ice skating, I love them because I feel proud I am doing a great job of making them see past disability which not only is great for me but for others with disabilities that they meet :) I never do go ice skating clearly but I am the social organiser or glue as they say of the group so if I don't organise it it doesnt happen!
Nice to talk to you, this is a good place to come when I need support which to be fair my mates think I am so grounded and strong I am their counsellor never other way around which gets a little exhausting on top of being a mummy on top of coping with rubbish body difficulties.
Right I am organising a retro party next so best go feed my son,read him some books and start thinking of ye olde games to do at party that I ,and my husband who also has youth arthritis, can whoop their bottoms at heeheehee.
I love festivals by the way, has any one been to the Larmer festival ? Isn't there supposed to be a children's festival with Zingzillas and Mr Tumble etc ? Can't remember what it is called but think it is in Devon, sounds a good time for little ones :)