CARPE DIEM?

Everyone should carpe DIEM...BUT on some occasions we all find this difficult. For me I've been struggling... I guess it's about this continuous exhaustion really. Real deep exhaustion is a facet of MND. It is deep, so so deep it is unimaginable unless you are there.. And life on your own,struggling with the issues that I am,ie the house sale and move etc...makes you feel low and vulnerable. On Saturday three of the group that I went to Thailand with 18months ago,came to visit, . I had loked forward to seeing Karen,marianne and Claire for so long. They all arrived about lunchtime. It was so funny. We had had one very spectacular night whilst in Thailand,drinking Blue cocktails. SO... I had bought ingredients for blue cocktails and they all brought ingredients too! When they left I realised there was much alcohol left so I do hope they come back soon to complete the drinking!! The plan was that not only did we enjoy blue cocktails but that we went to hebden bridge to see al the street fun connected with the arts festival... We left in dryness, but soon a monsoon arrived , I got soaked,my shoes have taken till today to dry! Sadly I was so shattered by the experience that I simply could not go out to the restaurant. The girls went to hebden and collected Thai food as a takeaway. It was lovely, but I was disappointed that I simply could not carpe DIEM. On Sunday we went to look at the bungalow and then on to the robin hood for lunch. They left about 2:30. Again I was so tired I simply sat in a chair for the rest of the day.... And I had been pushed around, looked after...actually did nothing... So Why,Why,Why do I get so exhausted. Well I know the answer, it's the MND.... But s..t it's hard to cope with, so so hard. Today I have been very weepy, . Bethan,my OT came, I cried. Michaela,my physio came, I cried. My stylus for the iPad broke, I cried.. Oh and my computer packed in too, so I cried! These days don't last too long, well I hope not... Michaela contacted the hospice. I think this is where I wish to die. I know they are kindly to patients but also support family. And no matter that I can do so little for my girls now, I will never stop beingg their mum and thus always wish to care for them. It seems that Oveergate hospice will give them support too. It seems to me that where I die has to be as kindly for Eliza and Christina and their families as it is for me. So this was hard. A referral to a hospice. On Wednesday I am going to the incredible edible meal for the Czech visitors, being held in the Todmorden Unitarian church. BUT I won't just be meeting with friends and enjoying the lunch. I will be carefully looking at the building as this is where I think I will have my funeral. So nothing is quite as it seems for me at the moment. Well never is it as I try to present. I try to be normal and as positive as can be, but underneath there is always this river of thought... I've got MND. I'm terminally I'll. How long do I have left? Why can't life be normal? Why dam I no longer useful? I'm just going to publish this copy. I'm writing on the iPad, and I find it difficult to redraft on.. So forgive spelling,punctuation etc errors. I'm feeling low friends. So please send your hugs to brighten my days. Thank you. HUG ME I'VE GOT MND