We were really hoping to go on a big holiday to China next year, to celebrate my husband's 70th birthday. We wanted to climb part of the Great Wall and then go on a cruise around Vietnam. But having Aplastic Anaemia makes travelling to certain places unsafe and I think we will have to rethink.

Even cruising, which we love, I am not sure that we can do it anymore, as you could be a long way from land and it could be a long while getting to hospital if needed. All these things now have to be considered not just for holidays but also - for normal living!

I'm not sure what 'normal living' is anymore! Going to a restaurant and being able to eat all the things that I could eat before AA, silly it may seem but eating normal foods such as salad or rice, buffets, I cannot eat outside my home in case of bacterial infections.

Doctor, dentist, practice nurse - please don't keep asking me how long I have been anaemic for! I have not got anaemia, I have Aplastic Anaemia which is totally different, I explain, my bone marrow is not working properly.

A lot of medical professionals have not heard or AA. And then they look at you with a puzzled look as if to say, but you look really well, how can you have this serious disease?

Sometimes I really want to to go out for a run as I used but that energy is not there now, so I walk instead. You seem to get so far into the day doing all the normal things and then the evening comes and you can do no more - collapsing on the sofa is the only option.

But there are times when I feel great and think 'how can I possibly have this rare bone marrow disease'?

I hope someone, somewhere will find a cure for AA for us all and we will be able to do all the things we planned for the future but for now we have to get used the the new normal and live life the best we can.