I was going to stay splitting the recovery up into weeks but to be honest things take so long to change there’s not much point!
Week 2 was the first week out of hospital really and it was quite a scary thought for me. I was convinced I would go into adrenal crisis at any moment (and my local hospital isn’t exactly great so that’s an extra worry) or I’d get a CSF leak. It didn’t help that this was when withdrawal really started to hit me either. Aches! Aches everywhere! I also found being at home that I really wanted to try and do things, simply because it was normal routine there. In hospital there isn’t anything to do except sleep, watch the nurses go about their rounds and eat. At home there are temptations. Like the degus need cleaning out. The bed needs making. The washing needs doing. Nope. I soon learnt this was all beyond me.
Luckily Mum had come over to stay for a while plus Niall took 2 weeks off work, although he used that time as a break for him as he knew he’d be working twice as hard when Mum went home. So I spent a few weeks doing nothing. I’d get up at 8am to take my meds. At first I would try to stay up and sometimes could stay up as late as 9am but would then have to go back to bed until noon. Eventually I gave up on that and would simply get up, have the meds and go straight back to sleep. I was trying to eat breakfast too but that didn’t work at all for me. I have never liked breakfast though I’ve always eaten it but now I really can’t stomach it.
Once I was up at noon it was more meds and some lunch. I found I couldn’t eat much, less than when I was in hospital even. Luckily I never felt sick, I just had no appetite. I found soups and things with sauce such as stews worked best. I’ve pretty much been permanently on soups for breakfast/lunch for the last 4 months now. I’d usually be able to stay up until 2 or 3pm then would have to go for another nap until 5pm.
5pm was more meds and tea time. Again I still had a very low appetite so I’d eat whatever Mum and Niall were having but in very tiny portions. I also had little to no smell from the surgery and therefore couldn’t really taste much which didn’t help. I’d usually be ok to stay up in the evening then but at around 9 or 10pm would be sleepy enough I had to go to bed.
This was the greatest time of the day in my opinion. Instead of waking every hour and needing a wee, I was sleeping the night through! Such a difference. I still felt exhausted as evidenced by my needing so many naps throughout the day but it was just so nice to go to sleep and stay asleep.
I also noticed my face had lost its redness and puffiness and my weight was going down. I was around 200lbs when I went into surgery. At the end of 4 weeks I was 187lbs. This was amazing! My fat % had gone up from 38 to 40 though. Yes I was eating less (and had no craving for anything sweet at all) but I was also still doing nothing. I’d clock up maybe 600 steps a day if I was lucky. It just shows what cortisol does to us weight-wise. I was also hugely relieved at this as some people don’t drop weight until they’re entirely weaned off the replacement steroids. My skin was also clearer and my hair was no longer incredibly greasy; in fact I could last up to a week without needing to wash it.
In week 3 I had a follow up appointment with my surgeon. Unfortunately I didn’t get to see my surgeon. It also brought home to me just how much I was recovering from.
To get to the hospital it’s about half a mile walk to the train station. 20 mins on the train, change trains then just 5 mins. It’s then maybe another half mile walk from the station to the hospital. Before the surgery I could manage it fine on my crutches so of course I figured I’d be fine now. Oh no. It was exhausting. I did it but only because I had to. I felt awful once I got to the hospital. It then didn’t help that although I was on one of their systems, the one that sends the letter out to tell me about the appointment, for some reason I wasn’t showing on their second system, the one that actually gets you booked in on the day. So the receptionists were messing about trying to sort that out, and when they had they didn’t come over to tell me! So of course I was stressing out a bit. Lucky I’d brought my hydrocortisone with me and took an extra dose which helped me feel a little better. It was also right over lunch time so Mum had brought sandwiches with us but I could barely eat them. For some reason I’d gone completely off bread since the surgery.
I finally got in but only saw one of the surgeon’s fellows. I think had my system booking not been messed up I’d have seen my surgeon. She was nice enough though and quite helpful but obviously hadn’t dealt with many, if any, Cushing’s patients as she told me I’d be on HC for life! Mum chipped in saying she thought it was only until my pituitary woke up, if it did, and she apologised and corrected herself.
There wasn’t much said in the appointment really, just asking how I was doing. She did validate all my sleeping which was good as Mum had been a bit mixed in telling me to rest but also trying to push me to do more than I was. She didn’t really look at my nose which I’d thought she would but maybe that’s because I had dissolvable packing rather than stuff that needed taking out.
I was utterly wiped out after this journey and it probably took me about 3 days to recover. These days had extra naps in the evening as well. Your body has become so used to the high cortisol that it just can’t function without it! I had been warned about this by my surgeon and read about it in my groups but boy, you don’t realise it until you’re living it. The only way is up though, right?