T + 409 Sgt Pepper side 1 track 4

Still up howling at the moon, but steroids down to 10mg per day and now off zopiclone for more than a week. Starting to feel a little more normal during the course of the day rather than like looking at the world with a cornflakes box full of cotton wool on my head. The weather is of course helping it's just so good to be outside again and I've taken to walking the dog twice daily when possible which also gives Milo a run out after school  and knackers him for bed time. I really don't know where he gets the energy to do it but he runs all the way around the two fields behind our house when I take Wellie (our lab) for a trot at night. Milo is always at least 30 yds ahead of me little legs pumping like pistons lollie in one hand and a stick in the other.

Had to go to Conquest today for a Pentamidine inhaler I know that its crucial to have it but I bloody hate that stuff - been coughing ever since. Only other whinge is hand cramps through lack of salts absorption so I'm taking magnesium and rehydration salts to keep 'the claw' at bay.

Leg strength is improving, I can get up the stairs carrying two cups of coffee now without chucking them all over the place, still have a tendency to fall into 15 minute catnaps if I sit still for long enough - consistently keeping/gaining a little weight as well, so feeling happy on most other counts.

Busy week next week;

• Mon - Dentist Reigate new crown over broken tooth at back
• Tues - Kings to see Victoria Potter
• Weds - Photopheresis Guys
• Thurs - Photopheresis Guys
• Fri - sleep all day (I hope)

I overheard a man chatting with  a nurse last time I was at  Guys likening maintaining your health after a transplant to having a full time job. In a way not so wrong - the responsibilities and duties that you must undertake on a daily basis would baffle most healthy people. From infection control, the constant washing of hands and use of sterilising gel down to being a meds nazi same time every day on the dot, to the constant risk assessment of being out and about, ie how many snuffly people are there on the train carriage etc. watching what you touch on public transport - like frigging Howard Hughes some times.Ensuring a high calorie diet to fuel the body to repair itself and for me currently, forsaking coffee - absolute killer. If they tell me the bovril has to go as well then I'm f***ed.

If I do any gardening I've got gloves hat and full fleece on to avoid cuts. Of course I am not even half sensible enough to think of this on my own, Jeannette has to constantly drill it into me or I'd still be eating 2 week old ham out of the fridge and cutting the green bits off the cheese to make it 'safe'. It was nice to hear that the 5 second rule actually has been established as scientific fact earlier this week, otherwise I'd be throwing away a lot of McDs pickles.

Oh and as a final comment the blog has just passed 9000 views since I first started in Feb 2013. who would have thought there was such an appetite for this drivel.

T + 406. Life after release.

It looks like I'm going to be  blogging by default because there is bollock all else to do at 3am when you're wide awake and craving sleep. Health has been pretty Ok since leaving Kings, appetite good - back up to 9 stone seven pounds - mouth ulcers a bit of a bitch and nagging cough but otherwise totally livable with. What really shocked me is how frail the rest of me has become - going up all the flights of stairs in our house leaves me puffing and knackered with wobbly legs, so some work required in this area I feel. I'm doing the dog walk in the mornings now and set a fairly sedate pace - no doubt keeping his up will help.

Some meds are being stepped down, Prednisolone is now 15mg per day rather than 60mg pre-Kings and MMF down to 2g from 3g. I have of course given Zopiclone the big E, once I got as far as 11mg with no effect I knew it was time to stop and this is why I up doing this - sleeplessnessnesssnesss.

I've had some fairly lengthy chats with Jeannette on how to work out coping strategies for being out and about again. She gets very concerned that I try to push myself to do too much too soon and if I'm totally honest she's right, I very much feel the need to be contributing but the flipside here is that it makes me tired and makes me ratty.

At the weekend with son Milo pushing my buttons left right and centre and doing a dance all over my nerves I could feel the old grouchy me starting to emerge very quickly as could Jeannette, so after a long discussion on Saturday night we worked it out that if I get in this state  I just tag her in like a wrestler and get the fuck out of dodge to get my head down for 30 minutes and it works brilliantly, Milo doesn't get a telling off I emerge in a sweet mood and we get on with the next 3 hours 'til we do it again.

My challenge for the next 10 days or so will be to hold thing together on 3 hours sleep a night (and daytime catnaps) until I can normalise my patterns post Zopiclone.