Continued:

4th December 2012
1.pm

Can things get any worse? Dan is now in so much pain with his lungs he is struggling to breathe and is also coughing up blood. His ears are playing up still and he looks so pale and ill.
On top of this, understandably the depression has kicked back in. Dan is usually so placid but today he is banging things around and being really moody.
Dan is fed up with all the tablets he has to take and says he feels like they are "killing him". He then talks about wanting to "hurry up and die". Hearing my child (even though he is 21) talk like this is destroying me. I try and talk to him to make him understand that things will get better but he is not listening at the moment.
He has an appointment with Hilary tomorrow so maybe she can explain things to him.
It's just watching him in pain and being helpless that hurts the most.
I have told him that once the Imuran starts to work he will be able to reduce his other tablets. I hope that is true.

5th December 2012

2.pm

Dan has seen Hilary this morning. his lungs are very bad and his blow test is awful. he has a very severe chest and ear infection. 2 weeks of strong anti-biotics to add to his list. The problem is that he is struggling to eat or keep anything inside him. I do not know if it the Imuran, the infection or a bit of both.
I am dreading the effect of more medication. Dan has already said he does not know how he will manage. He will have to be admitted if the infection is not controlled. He is in so much pain when he coughs. He is still getting chest pains and palpitations but he has not had another TIA yet so that is something positive to focus on.

6th December 2012.

Once again I spoke to soon. Another TIA today. Dan was complaining of head pains then had a TIA that meant he could only stutter instead of speaking and felt like he was about to have some kind of seizure.
This is very worrying. I really wish the Imuran would hurry up and work.

8th December 2012

The last couple of days Dan has suffered badly with his ears and lungs. He has a cold or flu virus still which will not go away. Today he also has "muscle aching" and knows it is connected to UV. He has also had night sweats again and is very tired. He is also sweating on and off during the day. He has reduced the steroids back to the normal dose of 4 a day so maybe this is causing the problem? I just know that as soon as Dan increases the steroids, just for an emergency, his body wants to hang on to them.

9th December 2012.

Dan is still struggling to get rid of this cold/flu virus. Today things were much the same as yesterday with aching muscles and sweating. Tonight at 10.30 pm, Dan was also saying he could feel the rash trying to break through and I could see a couple of suspect areas. He was also complaining of head pain just before he went to bed. I will have to see what tomorrow brings.

10th December 2012

This has been another awful day for Dan. He woke up sweating. He has had a terrible stomach upset for days and is struggling to eat anything. He is coughing and bleeding from his nostrils.
Dan went out at lunchtime and ended up vomiting in a car park. He was very pale and had head pains when he came back. He had to sleep for a while to recover.

This evening he has had terrible stabbing chest pains in the usual place on his left hand side. They are so bad they make him cry out. It hurts him to breathe in and I am worried. His BP was normal but he reacted badly to the cuff leaving his arm bright red. The constant nausea, probably due to the Imuran and the Antibiotics is really getting him down. Dan really feels like he cannot cope with the medication much longer.
I am dreading tomorrow.

12th December 2012.

Dan is really struggling on all the medication. He is getting very moody and difficult to reason with. I can understand as he feels so unwell. I am trying to get across how important it is to carry on with them without scaring him.
He has not complained (yet) about his chest today but it is still only 16:30. He usually tells me everything later in the evening.
I have found http://www.thelaurencurrietwilightfoundation.org/ really helpful. Sometimes you need to know you are not alone.
Tonight, Dan is saying he feels a little better. I hope this is a start of some long awaited improvement. He seems to be eating a little more as well, which is good as he has lost so much weight.