Post Cushing’s surgery – month 7

This month continued to be an improvement, although it was tough due to Covid-19 lockdown. No one can make their mind up if those of us in remission are high risk or not. Official word from the Endocrine Society was we’re not at higher risk to catch it, but we are at higher risk of getting severe symptoms. This meant we were ‘high’ but not ‘extremely vulnerable’. Seems odd to me. I don’t care about my chances of catching it, I care about how it’ll affect me!

Either way I decided it was just safer to stay in anyway and play it all by ear. I’m working from home anyway simply due to my recovery so it has made little difference to me. My clubbercise classes are continuing online so I’ve managed to keep up with doing 30 minutes a week although still at the lowest level.

I’ve noticed my hair now defaults to wavy/curly. It has always been dead straight. Oddly, long before any of my Cushing’s symptoms (probably a good 7 years before), I noticed one little bit near the front would go curly but not the rest. It seems that’s a thing with pituitary and hormonal conditions so maybe I had incredibly mild symptoms long before I ever suspected.

I’ve now lost 4 stone 2 lbs in total. My stomach still seems bloated during the day but when I lie down it flattens somewhat instead of remaining bloated (though I do have the oh so lovely fat that simply rolls down to the sides with gravity now!)

My appetite has finally returned fully and I’m eating regular sized portions. I’m enjoying it as well. My tastes have gone back to normal as well. Although I like sweet, I’ve always preferred savoury when given the choice. With active Cushing’s, I developed a huge sweet tooth, demanding chocolate every day. Now I’ve gone back to preferring savoury and can’t stomach much sweet stuff even when I’m in the mood for it.

My resting heart rate is dropping nicely. It was around 95-100 at one point but is now happily around 68 – 75 most days. Hopefully as I get more mobile that will drop again. I used to average around 62.

Since my surgery, the skin on my face has become really dry. Weirdly enough it is worse on my right side. The majority of my Cushing’s symptoms were worse on my left side; wonder if there’s anything in that? My tumour was on the left side of my pituitary.

I can now sleep for England. I happily get to sleep around 11pm and don’t need to wake at all during the night for a wee anymore. I could happily sleep through but have to wake up at 8am for my medications. I then go back to sleep until 11am and force myself to wake up then. I have managed to stay awake all morning when I force myself to, but it’s not often I can do that.

My weird curly hair!

I’ve been back at work for 2 months and have worked up from 2 afternoons a week to 3. I’m planning for that to be up to 5 afternoons by the end of next month. I’m definitely not going to be back to full time any time soon whilst I’m still struggling to wake before noon. I’ve also been informed by HR that I’ll be getting an occupational therapist. I’m not certain what that entails yet but the idea is that they are an independant party who is somewhat medically trained who can essentially tell work what my definite limitations are and give me some goals to work towards.

Mentally I feel much better. I struggle less with memory and speaking though I do still have pauses when I’m trying to think of words. They’re probably still very pronounced, just fewer of them. I still get emotional at things I wouldn’t have before Cushing’s, but less so.

The aches and pains of withdrawal have gone. I haven’t tapered since Nov, the last time I saw my endo so I’m sure they’ll come back but for now I’m mostly ok.

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