My food for today is a pack of cheesy TUC biscuits, i don’t fancy the ready meal that are in the fridge we never have anything different now mum has gone and i need help to make the one meal i’m good at which is pasta and bacon in tomatoe sauce, mum taught me to make it and its the only thing that i know how to do myself they only problem thought is when its hot i can’t move it or do anything with it as the shaking i get from medication side effects makes even the simple tasks challenging.
And if you have ever meet me face to face you will know that if i’m offered a drink i never have anything that is hot regardless of whether its cold outside or not even though most of the time i’d really love a hot drink so so much, but its embarassing to have shaking hands and drop a hot drink all over the place and then have to explain but its also even more embarrassing to ask someone to carry your drink for you. So i don’t both
I have cold drinks all the time even at home, there are relatives that know that i struggle with things so they always make sure i have at least one hot drink, when i visit but the rest of the time i have cold drinks always and lately i’m getting more and more bored of them each day.
I wish life was normal i wish i didn’t struggle so much with lots of things which are so easy and normal everyday takes for others i dreamed of a life where i was able to help others and my disease would be cured within a few years i know now that will never happen, on average a person with my diseases has a lifespan of 26 to 30 years if no infections are presented throughout the whole 26 years which is highly unlikely.
Every thursday i volunteer at Glenfield Hospital supporting patients like myself who have respiratory disease, i love this roll and have been doing this for the past 6 years. unfortunately back then i wasn’t a carer to my dad now i am and its slowly taking its toll which means sooner for later i’m going to be seriously unwell and at present i don’t have adiquit support to have a contingance plan in place.
Dad’s other leg is now weeping and also has loads of blisters on it, yesterday he had a pain scale of 8 out of 10 and today he has no pain, the carer didn’t turn up again today and dad has worked out that she is now only working 3 days a week and getting paid for 5 with isn’t acceptable he says he is planning on telling her, but i know she will hand her notice in and then i’ll be left on my lonesome like i am now.
Dad says if that happens he will cancel the direct payments that pay for the carer and get me to become his carer full time, he also said that this will me HOPEFULLY you and jenny will be no more and you will have much more time once you give your notice in as a hospital volunteer to, its starting to feel like i’m isolated and it will be my fault if something goes wrong, Jenny don’t know about this Blog and i really don’t want her to know about it but i also really don’t want to lose her she and the young lady i like are the only reasons i’m not ending everything at this minute.
My plan B was scrapped but there are lots of other options available to me and at this minute although people are trying to help, nothing is changing and i just feel like i’m not getting anywhere. I asked jenny last night that IF i wasn’t here please would she do me a deal and promise to make a difference in her life as well as others, she said she wouldn’t but i’m starting to run out of energy and no one really wants to know only 2 people so far.
I still trust the young lady more than anyone because she seems to see behind my cover and also sort of knows how i feel, she is possitive and always chatting to me well was but after yesterday she don’t seem to want to know me now.