Post Cushing’s surgery – month 6

6 months seems to have gone by so fast. In some ways it feels like I’ve come a long way and in others it feels like I’ve barely gone anywhere.

I started this month with having a catch up with my GP. I’ve been getting some odd lumps around my eyes and she noticed straight away. I’ve definitely been getting them since surgery and possibly before. She diagnosed me with blepharitis, or dry eyes. There’s a duct in your eyelids that creates oil to keep your eyes moist but sometimes they get gunked up, much like how a spot forms on your skin. I have to give them heat and a massage daily to try to get rid of the ones that have formed and stop new ones forming. The thing that struck me though whilst reading the leaflet she gave me was how it stated that the cysts which form are usually between 2 – 8 mm. This is the size of many tumours on the pituitary gland. It’s one thing to read how small they are but to actually see something that small really puts it into context. It’s strange to think how something this tiny can cause such havok on the rest of the body.

Small cyst on the bottom eyelid was there for a few months, larger one was quite recent. This is the size of my pituitary tumour, absolutely tiny.

I was also pleased that I managed to walk back from the GP again, which is around 1 mile, without crutches. Because of this I decided to start doing small walks around the block each day to build up my muscles. Unfortunately, the lockdown for Covid-19 came into place shortly after so leaving the flat is out for me for the next 3 months.

Two weeks in to this month and I hit two milestones on one day. The first was a total of 3 stone lost. The second was my first day back at work. I do admin work so can work from home, and had been for 6 months before I went off sick so I was all set up. However they’ve changed the main system we use so my friend had to come over to teach me how things work. I only did 2 x 2 hour shifts these first couple of weeks but boy was it exhausting. I spend most days on the computer anyway, being a gamer, but it’s very different when you’re concentrating on something that isn’t for fun and especially when you’re having to try to learn. My mental capacity is still definitely not back to 100% either so lots of notes were being made.

I did get a little annoyed a week into work. When I had my first call with HR to discuss coming back to work, they were concerned about me still sleeping until midday and all my other issues. I explained to them then that Cushing’s is not like a broken leg. You can’t say that most people will take x amount of time to get to a certain place. Some people are back full time within weeks. Others have to take medical retirement. So imagine my reaction when my manager called me to check how my first couple of shifts had gone only to then tell me she was fending off HR for me who were asking when I’d be back to 50% of my hours and then full time! I’d just done a couple of 2 hour shifts, it’s hardly a great base to figure out how or when I’ll be capable of doing 7.5 hour shifts 5 days in a row.

6 months on

So on to the usual list of updates. My total weight lost by 6 months was 44lbs. My BMI has dropped from 36 to 27.5. I’ve found I can lie on my front again without having to move within seconds due to being too uncomfortable.

I can feel my collarbones so easily but they’re refusing to show themselves when relaxed. I barely need to scrunch my shoulders forward to force them into visibility though.

Although I did walk back from the GP, I still felt like I’d run a marathon for 3 days after. However I’ve been managing around 1500 steps around the flat everyday and have been able to do the drying up most days. I was extra naughty and managed to get out of the shower by myself for the first time too! I had to lean on the sink to do it, but it’s a start (ours is an attachment over the bath).

The majority of my aches have gone although my lower back still complains from time to time. It mostly seems to cycle with my period which makes sense as I always had aches there from the time my periods started.

Every Saturday we visit a friend. He lives with his mum so we go upstairs to his room to play video games. I usually have to haul myself up by the rail. The last time we went before lockdown, I managed to walk up them slowly but normally. I also managed to walk down them normally for the first time, where I have been doing the “one foot down, other foot on same step” technique.

I still have speech issues. The pauses aren’t there as often but they are still very pronounced.

My stretch marks are pretty much gone. They’re all still there but are so light and silvery you wouldn’t notice unless you knew they were there. I no longer have dry skin on my feet or left elbow.

I no longer have to wee constantly through the night! I do occasionally but most nights are uninterrupted, other than by my cubital tunnel syndrome.

My biggest victory of 6 months though was that I managed clubbercise! And oddly enough it’s all thanks to Covid-19. Without that, my instructor would still be doing normal classes and I couldn’t attend. Instead, she’s doing free classes on zoom thanks to lockdown and so I joined. I figured why not, it’s free and I’m at home so what harm is it if I give up after 5 minutes? And I didn’t. I managed to do the entire 30 minute class. Admittedly I didn’t do much; I walked the routines. No bouncing, jumping, definitely no squatting as my knees are still agony but I still did it. It felt so good to do it, a small point of normality. Something we all need at the moment.

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