Oh dear God, I haven't had the time or the energy to write this since Monday. Work has nearly killed me, but I've managed to keep all appointments/meetings (even if I look shocking)! Am seriously wrecked and just hoping that bloods start to settle again on increased steroids. Every muscle/bone in my body hurts.Driving down the A30 at 8.15 this morning whilst trying not to throw up was not pleasant. Don't remember feeling this tired since I worked nights and had to look after my son the next day............and I was young then!!! M has been brilliant, encouraging me and preparing healthy meals for when I fall through the door at the end of the day. 2 appointments tomorrow afternoon, then REST over weekend. This HAS to get easier soon

I got back today from a lovely restful weekend in a friends barn conversion on Dartmoor. Nothing to be heard but the stream and the owls. Very peaceful, and gave me time to relax and be alone (except for the 2 dags I took with me)! Sadly, I went to hep clinic this afternoon and my liver enzymes are still rising, and in fact had gone up by as much as 2/3rds since last week. This despite increased medication over the last 2 weeks. Consequently, my steroids have now been doubled (oh joy, more hair in the wrong places, bruising, spots and an even fatter arse). They think its a flare and think the steroids will get things back under control. I confess I wept. It seems so unfair, I'm trying everything to beat this (ok not everything I'm still smoking), I live on healthy veg/fruit /nuts, I rest,don't drink alcohol, drink water and herbal tea, have had Reiki, bought meditation cd's, had a weekend relaxing retreat, take all prescribes meds as I should, am planning appts in the afternoons and typing notes in the evenings so I can get going gradually in the mornings.....................I this is what I get in return. well I guess they did say remission can take 18mths -3yrs, the trouble is, at what cost? Bloods again Friday, clinic again Monday..........and so it goes on..........

Well work was interesting! Only had a few hours sleep last night due to nausea, so started the day feeling like death. My first patient opened her door and announced I looked dreadful, then asked if I should be out and about yet...........cue big smile, lots of lies about being just fine, and on with the assessment. At the second visit, I spent half the time distracted with whether or not I would make it to the end without throwing up. Dreadful weather in Cornwall so horrid drive home. First visit tomorrow is at 10.30 am.......should be looking and feeling great at that time!

Seen in clinic. Well, bloods continue to go in the wrong direction. The reason I'm so tired and achy etc is either that I'm experiencing a flare up or it's drug side effects. The consultant decided to increase everything in the hope that it gets back under control. So now I'm on 750mg mycophenolate twice a day and prednisolone back up to 10 mg. I'm between a rock and a hard place, either it will all improve in the next week, or things will get much worse.......no way of knowing. Bloods again Friday and clinic again next Monday. Am seriously pissed off with the whole thing. Have to work tomorrow weds and Friday, should be interesting.

Really struggled this week with work. Just can't get going in the morning, but seem to improve by the afternoon /evening. Still getting cramp and have had lots of joint pain over the last week. Not sure if this is side effects. Got called back to give another blood sample on Wednesday this week (not sure why, but apparently the hepatologist asked for repeat mycophenolate level). Clinic Monday, so I guess all will be revealed!

Still finding mornings really difficult. Not sleeping well and then groggy and tired till at least mid afternoon. Have started getting cramps in feet/toes again, and discomfort in liver area. Not back to clinic until 20th, so will know how the mycophenolate is performing then. No longer nauseous and hair loss not so evident, but could really do with some energy!!!

Bit of a struggle to get going this morning, but seemed to improve as the day wore on again. Went to work, found it tiring but ok, and can't wait to get stuck back in properly next week. No nausea again today. Bloods tomorrow...restful weekend then back in work Tuesday all being well.

Slept like a log, but woke feeling exhausted and irritable. Got myself in a state in Tescos this morning when I had chosen the checkout with a newly trained member of staff. Became irrationally irritable at having to ask for bags (repeatedly) then having to wait as she couldn't work out how to weigh my fruit and veg. The final straw was her inability to take my discounts off with the tokens I handed in.............I tried to be patient.........didn't work. Mood and energy improved as the day went on, but still needed a lay down at lunchtime. Not nauseous today! Hooray!

Woke up feeling very tired and woozy today...........not what I wanted on my return to work! However, I made it in this afternoon, and began the painful task of wading through emails and my case list to try to catch up /prioritise work. Felt utterly exhausted after just 2 hours at a computer. I'm sure I'll feel more positive next week when I get out to see patients again though. Donkeys had to go to bed in the dark tonight....don't think they were very impressed! Off to bed shortly, day off tomorrow, then in again Thursday.

I got carried away with last weeks improvement and have been generally unwell for the last 3-4 days. Very nauseous after taking the mofetil, muscle/joint pain, tiredness, disturbed sleep, muzzy headed again. Was seen in clinic this afternoon by Proff Cramp, who had intended increasing the mofetil, but has decided to leave it a bit longer to see if I tolerate it better. Instead, he has increased the steroids a bit to help me over the immunosuppressant changes (or as the hepatologists like to call them "the steroid sparing drugs")! The bloods I had done on Friday have gone up a bit again, so hopefully the steroid increase will address that. Bloods agin Friday, review again in 2 weeks in clinic.
I am starting back at work tomorrow on a phased return. I had been feeling really positive about it, but have to say my confidence has been shaken a bit by how unwell I have been feeling. I am keen to try to regain some normality and to be distracted from this all consuming condition. I'm so sick and tired of it and it dominating everything I do. I wish it would just go away.... but know that it never will.

Have now been on mycophenolate mofetil since Tuesday morning, and can report feeling HUGELY better!!! New energy, less grey faced and saggy eyes etc. Only noticeable side effect so far is nausea 1-2 hours after each dose. My head feels clearer and I seem more able to get things done without utter exhaustion. I know its early days and I mustn't get too excited, but the signs are all good so far. My gp has signed me back to work on phased return next week, and I saw my manager today who was incredibly supportive and has worked out a manageable plan, starting with just 2 afternoons next week. Bloods again tomorrow and hospital again Monday for results. Maybe a Happy New Year after all.