Week 17 - UK

Long time no see – or no writing. I didn’t know how to put it or if I should write about this at all. But here it comes. It has been an awful start of the week. I have been in such a pain I can’t describe. I can explain about 8-10 different kind of rheumatism pain but this is so different. In a way it has nothing to do with the rheumatism and yet it has anyway. Sometimes I fell that everything has to do with my rheumatism. And it also has to act on my daily life with Mary Ann and how to deal with her and her needs. That is why I do write about it now. My whole intension with this blog is to record our daily life for my own shake, Mary Ann’s and for others if anyone else can benefit from my experience or like to follow Mary Ann’s development.
Now I think this heavy pain comes from my muscles. And it is because of lifting Mary Ann. It can last for hours and hours and it seems as nothing can ease it. It goes on and on. I find it difficult that I can’t do anything to improve it. And the fact that it ruins the next couple of days as well after a night like this one the night between Monday and Tuesday is bad enough. That it also ruins my possibilities to handle Mary Ann every day is really irritating me. Especially because I can lift her, change her and things like that. But I have to leave Neil to do it because that is what makes this pain comes back. Next to that I have things that I can not do. Therefore it is especially irritating not to be “allowed” to do what I can.
The week ended with me being with my psychical therapist. That changed some things for me because she came with different good ideas in how to handle the pain and how to prevent it being so heavy. That has totally changed my perspectives. Now I’m not so nervous anymore for it to come back.
Mary Ann has gone through a good development the last week. She has swiftly grown out for five different jumpsuits. She is so much more awake throughout the day and much more curious. So we have now introduced her for her mobile. She gazes for hours at this mobile. She has also developed at bad habit of eating small portions all the way through the night. So now we try to feed her more, make more funny faces and sounds with her, read and play music and things like that to keep her awake in the daytime. We hope that will make her sleep more in the night again as we were use to. Cecilie play music for her as well. Cecilie got a new mobile phones which she takes with her everywhere even at the toilet if I can’t help it. I like her to try and separate from it once in a while when we eat, when she goes to sleep and when she has friends over. The good thing about it as that I always know where Cecilie is. Mary Ann loves the phone as well or at least the tunes coming from it. Cecilie is singing along and Mary Ann pretends to sing along with her sister. She giggles and moves her arms and legs around when the music plays. We all love music here, Neil as well. Once I found him and Cecilie dancing around. Scenes like that make my heart all soft. I love when we all join up with a special thing, except once this week. Neil where vacuuming the body of Cecilie who had been very creative. She had expanded polystyrene all over the kitchen floor and her self. To my horror he also had Mary Ann on his arm in the same time. I had to rescue my baby. When I came to think of it, Neil was totally on control with things. Sometimes I forget that he can manage at lot more then I can in a physical way. He would of curse never do any harm to her. That was also why I didn’t tell him of. I just grab my baby because for me it looked a little difficult.

We have had some friends over this week as well. Suddenly our friends Rikke and Jan from Randers called if they could come by. And Friday we were on a visit at my work. That was such a good visit were we had time to chat to with most of them. I thought they didn’t have the time to chat so I was ready to leave them on their busy own way. I was very happy to see them all again and get all the good news private and work wise as they had for me. My colleagues mean the world to me.

I think we only write every week now because of Mary Ann’s increasing needs.