Hi I am agreeing with Poll and AAlison. You do need to look after yourself as much as look after Rachel. Coming to terms with this disease is not easy for anyone and it isn’t just the person who has the disease. Hav you tthought about counselling I know it isn’t for everyone but might be worth a go. You are being a really good mum and being there so much for Rachel. Itis good tthat she doesn’t have an infectio and she can start the ssteroids hopefully these will make her feel better again soon. I know it is easier said than done but write down all your questions you have about tysabri and then put this away in a draw until when you next see neuro. Or can you make an appointmentwith the MS nnurse and ask them the questions you have. So you empty your head of all the thoughts. Hope things look brighter soon. Barney
Hi Barney, great minds think alike. Have just started a list of questions. Have spoken of my feelings and fears to hubby who just went quiet. He does not know what to say as he is scared too but trying to be the “man”. If he can’t fix it he is lost. Would not consider counselling as had that in the past for something else and found it frustrating and waste of time and money. Thanks for ideas, Linda x
How are you feeling today Linda?
I agree with all that has been said above. There isn’t much I can say to make you feel better. You need to get answers to all the questions you have from Rachael’s neuro. And remember, worrying doesn’t help or change anything, just makes you feel rubbish and makes those who love you worry about you worrying. I know this is hard and easier said than done, especially when someone you love as much as you do is suffering.
Keep your chin up eh?
Shazzie xx
Hi Shazzie, not feeling too bad today. Rachael on 2nd day of steroids. Have about 8 questions written down to ask neuro or MS nurse next week. Spoke to nurses who were giving Rachael her steroids and they highly recommend Tysabri as they see people every day on it. There was a woman in the same room as Rachael who was also getting steroids and she was receiving Tysabri, says it has done wonders for her (although I did wonder how wonderous it was when she was getting steroids). When I mentioned to the nurses about Rachael being 16 and Tysabri was not supposed to be given to anyone under 18 they did look a little confused and did not know why she would be told that could be the next step when she was under the age limit. I do know that worrying does not change things, it is something I would tell someone if they were worrying about something but it’s hard not to. Does not help that I can’t sleep either, hopeing exhaustion will eventually make me sleep tonight. Thanks for reply. Linda x