i'm soooo tired

today i am sooo tired, the weekend went better than expected, they waited to see how his body would react on certain medication, the visual disturbances stopped, but on monday he didnt feel very well and sickly, and he couldnt get warm, but compared to how he is sometimes this is easy to cope with. i suppose i have to put faith in the new doctor and see what she can do, on tuesday he was allowed home again, his blood pressure in getting a tiny bit lower again, which is good, so now darren is out of hospital, hopefully not just on ward release, (he gets really stressed out in hospital and it is better for him to be at home they say) i think personally they just want the bed sometimes. last night was on ok night, he was awake alot, tossing and turning so i was too, yesterday we also recieved a letter for his regular transplant clinic appointment, for mid oct? so we are thinking that the transplant won't be before then, i wish they would keep us updated. i feel really tired but i cant sleep, which sounds stupid but thats how it is, i feel on edge all the time and always getting headaches, but hey this isnt about me i should be thankful i'm not going through the same i am off to work today, the government in there power have finally said that we do deserve some kind of care allowence! they kept on saying no, because i didnt have to dress jack everyday! which seems ridiculous, i'm sure loads of people getting help dont have someone get them dressed everyday! but i appealed twice, (like we havent got enough to do) and i was told to write down what i would have to do if jack was having a bad day, so i did, so in a nutshell when his hemoglobin is really low and he can barely walk then i have to take him to the toilet, he hates that but it has to be done, when his toxins are running high and he is having a sick day he can be in bed and be sick all of a sudden, so i have to get him in the bath to sort him out, change the bed, clean up any sick etc(which seems small to some people but try doing this regurlary or upto 3 times in one night) he also has an open wound that will stay open until he has his transplant that i have to dress to make sure he doesnt get peritonitis, he also can't do much around the house, he isnt allowed to use a hoover, (due to pulling it, and pushing it putting strain on his peritonium) somedays he gets up, goes to the toilet has a wash then he is asleep for the rest of the day he is so exhausted, and sometimes i sit there and feel like i am on my own, this isnt jacks fault, he cant help that, i think sometimes people dont fully understand, mates come and go, cause they dont hang around when you have to let them down cause jack has been rushed into hospital, so we daren't plan anything, we live each day as it is, we have some very good friends who always ring up to see how things are or pop round, but no one likes to pop round in case jack isnt well etc, so we live in our own little bubble, which is ashame sometimes, but its life i suppose, and then you get fed up of telling people the stories of what is going on at the moment, do they want to know, really? or do they ask out of politeness and really i am just boring the heads of them? cause i dont mind telling them but you see some people just shut off when you start talking to them about it, this has been the most stressful time in my life, and at times i feel so depressed, but the thing that keeps me going is that oneday soon the transplant will come and we know there are risks of rejection and failure and complications, but i am trying so hard not to think of that, else i will go round the bend! the thought of dialysis forever makes me sad, for jack, not me, but whatever this world is throwing at me i keep taking it all in, a nice intensive care kidney transplant nurse has given us lots of advice on what to do after the transplant to give it the best shot and we will do this and thank her for the advice, she got in touch with us in her own time and isnt from our local hospital see the nhs does has some good parts, i think ( I HOPE)