Grace has just finished a course of IV's on Thursday. Whilst on them she struggled terribly. Firstly because she was on meropenum this time, which really makes her feel rough and also because she had a much longer needle in this time round and it was packed out mainly because it was sticking quite a way out of her chest,consequently she found it painful to jump around etc.

We found that we couldn't do percussion because it was very uncomfortable to lye on her port so she did two weeks of acapella.

She seems fine and seems to have crazy bursts of energy for an hour or so then she goes right back to her extreme bouts of tiredness. We don't know what it is, but have resigned ourselves to the fact that some people with CF have this whatever, and certainly having spoken to others with CF it seems to be the case.

The nurse advised us to put her to bed earlier to try and counter balance it, the suggestion was 15 minutes earlier each night, so we are currently in the process of trialing it and I will update any results when we feel there is anything.

Presently she has just lay in bed and twiddled her thumbs and will not go to sleep, last night she was in bed for 7.45 but at 10.10 when I went upstairs, she was still wide awake. We have been advised to not let her read or watch tv or anything that will detract away from absolute rest (which we have allowed her to do in the past just to try and make sure she stays in bed) the thing with Grace is that she is always exhausted very quickly, and will lye down and have total rest,but will not go to sleep. She does sleep at night and does't have a problem sleeping, but can't be forced to sleep when we want her to sleep.

I have been stepping up the fitness again and have been going to the gym on more of a regular basis, even though now it has to fit in around work. Tomorrow we have not got to go to church as it is 'Community week' this is where our small house groups do 'Church' out in the community, be it feeding the homeless or litter picking. Our house group has other commitments this month and we feel also that Alpha has been a community issue and preparation for that alone is a community project, also some of the group are attending a CAP course which is also a consideration to the community. So what I am really trying to say is I am at a loose end tomorrow. My plan therefore is to do a very long run and see how far I can actually do, so watch this space and see if I am prepared for a marathon yet, or half marathon, or 10k or 5k............