I'm so ticked off!! I am constantly told by staff that they are always available to talk to and help me through stuff when I'm struggling. So I am finding things quite hard this morning and am really stressed and finding the urge not to vomit unbearably hard to fight so instead of bottling things up and giving in to the urge I go to the office and ask if anyone is free to have a chat and do some relaxation with me what do I get "err not really were short staffed perhaps we might be ok this afternoon!!" brilliant!! I completely give up so because they can't sort the bloody staffing levels out we as patients are expected to put our needs, feelings and stresses on hold until its a more convenient time.
This has just once again fed my feeling that I'm not really important any more and not really worthy of their time and support. I feel like I must be fine now and ready to go home having gone from constant panic about my health and 24 hour support to bugger all almost over night. So it's back to my original plan of head down get on with it get to a better weight and go home and just try to cope.
That said I would like to say that the staff who were on last night were amazing and actually made me feel like a human instead of an illness. Ben was home yesterday after several weeks away I was sooooo excited to see him although nervous as to how much of a change he would see in me physically. (he couldn't see any, or so he said) His work that has kept him away and ridiculously stressed was finally shown on BBC Children in Need last night so he came in so we could watch it together, great plan until we found out it would be on between 9pm and 9.30pm and visiting finishes at 9pm. I spoke to staff to see if there was any chance he could stay half an hour longer after all it's not everyday your husband has work shown on the BBC. Not only did they say yes but they even allowed us to go in to the day care lounge so we could watch it one the big tv rather than my iPad. It was incredible I was so immensely proud I think I continued to smile about it for several hours after. It has been a hellish project filled with problems, arguments and 24 hour working days but I have to say it was worth it all and the finished piece was superb. What made it all the more perfect was getting to have an hour of relative normality being able to curl up on a sofa with him to watch it, in fact I think that's the longest we have actually sat with each other without me getting up for more food supplies or to sit by myself for years and it was wonderful.
I know this blog is about me but part of me is my love of my husband and I am so proud I want to share his work with you so go to you tube and search for Morcome and Wise hologram and you will be able to see the piece with Chris Moyles and also the making of video with Ben himself.
Well done Ben so proud xx