The biggest reason I hate M.E

Sorry I haven't posted in a couple of days but it's been a nasty couple of days. Niamh has been ill with a sickness bug and a virus affecting her ears, nose and throat. She's barely slept for the past two nights and has been in our room both nights (in our bed for quite a large amount of time). Meaning that I've not been feeling well either well, completely exhausted as a matter of fact. But that is not the reason for the title of the post.

After Niamh hadn't been sick in a good 6 hours on Monday night she puked bile, after calling NHS direct they decided that it was a cause for concern and that she should normally be seen at a hospital. Because she was handling it so well (quite alert and active) they decided it would be ok to be taken (swiftly granted) to an Emergency GP saying if the GP thought she needed to go into hospital he would send her on from there. The problem was this was 11pm and I took my overnight meds at 7pm and was almost completely unable to stand let alone go anywhere. That and, neither myself or Chris can drive. So an fast call to my parents and 10 minutes later Niamh's uncle was at our door to take Niamh and Chris to the doctor. But I couldn't go. I have never hated M.E more than knowing that Niamh needed me and being unable to be with her. I was already having enough problems but the added worry and stress caused me to have spasms and shake from head to toe. I was in floods of tears and really needed to be with her. I knew it was really for her own good that I wasn't going though. She needs me to be as well as possible to look after her and care for her. It was this reason I didn't go and if it wasn't the case I don't think that anyone would have been able to stop me. I was lucky that I have a got circle of social networking M.E friends to remind me of this otherwise I think I would have gone to bits.

That being said I don't know how I am going to deal with everything that medically speaking the future holds for Niamh. If she ever has to go to A&E or if she has to have an operation or get admitted into hospital. I know I wouldn't be able to be the one that goes in with her, I have a hard enough time from a deterioration stand point when I have to go in (which thankfully hasn't happened since I was pregnant). Let alone with the added stress or attempting to sleep in a fold down, chair/bed thing. I will hate not being with her, she always wants me to be with her. But I guess I'll get over that hurdle when/if we come to it.

My other big worry is my inability to look after her solo when's she's ill especially after such disturbed nights. Therefore the added pressure of Chris having to have a couple of days off to help out. My family have been fantastic and rallied round doing washing and cleaning so Chris can focus on looking after Niamh and me. I think these worries are always present in the lives of someone suffering from this disease. I just tend and try to push them to the back of my mind most of the time but sometimes of course I am forced to confront it. Then I just use the time to figure out a plan (in this case, Chris will go with her and I will stay home and cry) wallow in it a bit, get upset, write about it and then get on again. Because if I was to think about everything I can't do with/for Niamh it would put a serious dent in my abilities to do things with her. There is a LOT I can do with her and I need to both focus on it and enjoy it!

Here are mine and Niamh's 366 pics from today.

Niamh asleep in her cot (finally moved back into her own room for her afternoon nap) and hiding from the world!

And mine, me and Niamh having asleep snuggles together.

Night folks!