Part 3: The Cushie Revolutions

So in Part 2, I left you when my mum finally returned home and I was left to deal with the recovery alone.
I experienced a deep sense of loneliness and a part of me was scared. Scared about whether I'd be able cope, scared about what to do if anything should happen to me, but mostly scared about whether the depression would return. After all, I wasn't sure if all of the depression I experienced before was due to the Cushing's or if some of it was because of an unhappiness with my life.

Luckily there was only about 10days of being alone before I went away on holiday to visit my family in Morocco and France, but it turns out I didn't need to be scared! Of course there were times when I felt a bit lonely and sad, but these feelings didn't last very long and most of all, they were appropriate for the situation. For example, I would feel a bit lonely in the evenings when it was cold and I was having dinner alone. But I would be able to sit with the feeling and then move on, something I hadn't been able to do until then. Before the surgery, I would experience bouts of depression and not understand why! They would happen at the most random of times and I wouldn't be able to control them or even how long they would last. It therefore became very clear to me that all of those times before, I had simply been experiencing hormone driven mood changes which had practically nothing to do with my life...

I of course discussed this with my eating disorders therapist because another thing I noticed was that I didn't resort to food to make me feel better and my appetite hadn't returned to its ogre like pre-operative state. Yes, I was still eating pizza and McDonald's once in a while, but always a reasonable amount and never to the point where it would turn into a binge. I was able to control myself and was no longer experiencing those intense hungers like before. In fact, even though I hadn't been exercising or dieting, I had already lost around 4kgs at this point.

So in the time I had until my holiday, I started getting back in touch with some of my friends and attempted to go out at least once a day, as I had done when my mum was here. I must admit that it was that little bit harder without someone to encourage me and the fact that the weather was becoming colder everyday didn't help either but overall I felt like I was doing well.
Unfortunately I quickly started to realise something, the recovery would be long and slow and it would feel like some days I would take one step forward and the next day would be two steps back! The little barriers I experienced in the first few weeks: cold, neck infection etc... were only a small taster of what the following weeks would be!

Some days I would wake up and I had absolutely no energy whatsoever. It was tough just getting out of bed and getting dressed, let alone doing anything remotely productive. My days mostly consisted of doing whatever I could around the flat and visiting the doctor. This time, instead of trying to phone my consultant, I decided to send her an email with all the questions I had and reminding her that I was going away soon and hadn't actually been given an emergency injection to carry on board with me or even been shown how to use it! Turns out, she responds quickly to emails and put me in touch with her specialist nurse who told me to come in the following day and she would go through everything with me.

Before going off on my holiday I was therefore able to meet with the nurse who went over the procedure of the emergency injection with me. I have to admit, when I saw the size of the needle, I nearly fainted then and there. Luckily turns out I usually have about 2-3hrs window before I need to have the injection, meaning I can usually arrange so that a medical professional is able to administer it to me. However, there are some exceptions. Should I suffer from an accident or learn of a bereavement in my family, I am to inject myself immediately. This is because these are times when your body is under enormous amounts of stress and in order to respond to this, it must produce Cortisol, which is the hormone that I now under produce!!

But I decided that I wouldn't let all of this worry me or stop me from enjoying my holiday and it didn't! It was however heartbreaking not to be able to do anything. I spent everyday just relaxing, visiting with friends and family but that was all I could do.

When I returned to London after about 10days off, I started work again. I had been offered a job at the charity I had worked for this summer and during my placement and we had agreed that I would start off doing 2 weeks at 4 days a week in November then after my long Xmas holiday to Asia, I would return and work 3 days a week for 3 months (Jan-March).
I had truly underestimated how hard it would be to go back to work! Even though I was now 2 months out of surgery and starting to recover, 9-5 work was killing me. I would come home and barely have enough energy to cook myself dinner! Sometimes I would go to bed at 7.30pm without having even eaten anything because I was simply too tired. And when I would lie down to sleep, my body would feel as if it had been beaten! Like I had run a marathon that day and all my muscles were aching.
Turns out, this is normal... I read an article on the Cushie website that I often refer to because it has such great information and apparently weaning off cortisol is worse than weaning off heroin!!!! This is because you all of a sudden feel all the aches and pains that this natural steroid had previously masked and unlike heroin rehab which only lasts a couple of weeks, cortisol withdrawal is painful for months and sometimes even years!

A few other things happened during the 2 weeks before I left for Hong Kong and my Xmas holidays but nothing too important apart from a blood test result. My GP was concerned that this excessive tiredness and my stomach problems (I was suffering from a lot of heartburn and nausea) was due to low Cortisol. This is of course probable and why I take Hydro as replacement, but if the cortisol is too low, I should be taking a higher dose.
I got the result just before leaving and at 8.45am my cortisol was 139 which is low as the normal level should be between 170-600 but in a way this is good news for me. OK, it does mean that my pituitary hasn't started functioning perfectly again yet, but at least the Cushing's isn't back. With a 44% recurrence rate, I would rather have a low level and have to take Hydro. Also, my consultant was happy with that result and said that my hydro dose was fine and all I needed to do was listen to my body and rest.

Now it's 12 weeks post surgery, I am on holiday again but this time I'm in Hong Kong. I'll be here for a few weeks before heading to Singapore and Thailand for Xmas and New Year's. It's tough because when I'm here I always want to do so much but I just don't have the energy, but on a good note, I've now lost a total of 10kgs!
Oh and I also haven't touched a single cigarette, drop of alcohol or caffeine since the surgery. I'd say that's pretty damn good...