Cushing’s surgery – 2 years on

Two years already, where has the time gone? I won’t be doing such an in-depth post as I did for my 1 year anniversary; instead I’ll redirect you to that post for a full run down of what my symptoms were before surgery and how they had improved and will detail below my further improvements.

Mostly I’d say I’ve maintained what I’d achieved last year but there have been a few improvements, mainly in the last couple of months. My weight has stayed very stable. Occasionally it has dropped to 136lbs, occasionally it jumps back up to 143lbs but on the whole I stay at around 140lbs which is just within a healthy range for me. My stomach does still hang down but the sides are less flabby and it’s definitely no longer bloated. I basically just have loose skin that needs to shrink now which I know will take time. My collarbones are most definitely back now as well. My head hair is much thicker and healthier looking.

My aches and pains are a lot better though I still get them. My lower back tends to only ache if I have sat around too much and my hips and knees are generally ok now. I do get some discomfort when I go out walking; oddly I have a slight limp when walking outside but the instant I go indoors, even in a shop, the limp will disappear and the discomfort that caused it will go too.

2 years post surgery

Speaking of walking, that’s slowly improving. I’ve managed a couple of 2 mile long walks now, including heading to our friend’s house down the canal once. I have also made it to Tesco on my own a few times which is a trip of about half a mile each way plus of course the walk around Tesco itself. I even walked with my boyfriend to Morrisons one day, a trip of about 3 miles altogether. I never thought I’d be so excited by that prospect but I was telling people for the week before that it was planned, like it was a big day out!

The last 6 – 8 weeks have probably given me the biggest improvements. I’ve finally stopped feeling freezing all the time and no longer get dressed them immediately put my dressing gown on as well. The cough and runny nose following surgery are no longer a daily occurence. The biggest improvement though is that I have finally been able to get my full day back. I can wake at 8am for my steroids and stay awake. I can’t do much on a morning, I still take it easy, but just being awake is a huge improvement and hopefully as I build up strength I’ll be able to get back to a more normal existence.

I still have moments of panic that the Cushing’s is returning. If I wake in the middle of the night for a wee, or have an emotional day, I instantly start worrying it’s back. If I spot an unexplained bruise or have a bad day for brain fog and confusion, I worry it’s back. I had an early morning cortisol test back in June after witholding my steroids for 24 hours and my levels were only 125 so I should be ok still. Ideally it needs to be 300 – 350 so I’m still steroid dependent but it has improved from the 49 that it was 10 months previously. I’m waiting for an appointment now for an SST to see if it’s my adrenals or pituitary that are still being lazy.

I’m learning to be patient and to look after myself. I’ve settled into 25 hours at work and am quite happy just doing those hours. Best of all I’ve been lucky enough to be accepted as an admin on my support group on Facebook and hope to help the other members going through this horrific disease, as the existing admins and other members have helped me, more than they’ll ever realise.

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