Well our last week has been a real mix of laughter, tears and positivity..........
Wed August 19th
Usual start to day for Niamh, exercise plan, losamel before breakfast after, naproxen and folic acid. Niamh spent an hour on her bike as this helps to keep knees mobile. I spend a little time surfin net always on the look out for any hints and tips to ease Niamh's pain. At the moment we using Pernaton gel this seems to help with pain.Got a phone call asking was Niamh able to travel to a camoige match tonight, for any child this is a nobrainer....But for Niamh it meant an hour on a bus to the match so she arrives very stiff and has to do extra exercises when she gets to pitch..We went and how proud was I to see Niamh running on for last 10 mins of the game. I could see how much pain she in but she ran and chased ball like every other girl... and they won........ Long hour journey home after..
Thurs August 20th
God did Niamh pay for last night.... She very sore and spends about an hour feeling very sorry for herself.. Usual questions.. why me? Will I have it for life? Why do I have such a bad life? I try always to see positive and encorage Niamh to not let it take over her life. It won't beat us.. We had to travel 10 miles to get Niamh's eyes tested for uveitis a condition associated with J A. Niamh has never had it but we get checked every six months..We had a swim in the afternoon and this cheered her up..
Fri August 21st,Sat August 22nd,Sun August 23rd
Usual start every morning except on sat and sun niamh has a friend to stay and doesn't always want to do her exercise's on front of other people... She spends time playing and having a very normal weekend.. Niamh never complains to her friend's and they are very unaware how much pain she is in...
Mon August 24th
Niamh woke up with large blister on her face.. I am in a right panic I ring crumlin but Dr Killeen not back for another 2 wks.. I ring my dr but he doesn't want me to stop naproxen which he is pretty sure is causing it...Niamh lying on couch looking pretty miserable....
Talk soon
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If any parent is feeling alone or needs support, please call the Arthritis Ireland Helpline on 1890 252 846 where trained volunteers with arthritis can offer you support and information on all aspects of living with arthritis.
ReplyDeleteWe also provide a Parent2Parent Network so you can talk to parents who are dealing with the same issues as you are. So get in touch today, you are not alone.
Thats a great idea to have a Parent2Parent network, where parents can share stories and give advice to each other. i think it helps a lot to know there is help and there are people out there who are willing to help.
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herbe
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