Sunday, December 14, 2014

You don't know how I feel

'I am sorry, but I am NOT clinically depressed!' - I screamed in my head, as a friend (not the first, nor probably the last) who suffers from clinical depression veered off into a description of her condition as a way of empathising with me, and to 'make me feel better'. She was not to know that this was the last straw for me. I am tired of people trying to comfort me, either by telling me that I have something similar to what they do, or by telling me that my situation is not so bad compared to theirs and go into great detail about whatever medical conditions they have.

I have finally had it. I have my own problems and I am not strong enough to listen to others' ad infinitum!

I have not been well at all since July or August, when the Exemestane stopped working. We have tried several combinations of pills: Everolimus alone, in combination with Exemestane, lower dose of Everolimus and now this Megace. Either they don't work, or they work, but the side effects are unbearable. I live in limbo, floating from unpleasantness to unpleasantness - mostly sleeping. With this Megace I sleep 6-9 hours a night and then have 4-5 hours of naps during the day in small increments. And when I say nap, I mean I get so sleepy that I am off with the fairies as soon as my head hits the pillow. I can barely walk. I have difficulty getting up from a sitting to a standing position, and with Megace I sometimes have difficulty breathing. I have trouble driving at night, so I go out only when I can get a ride. Yesterday I realised I get too tired in large crowds, even when it's people I have known for years and really want to catch up with. Yet!

I keep my calendar active. I diarise every event I am interested in attending. I am active on social media and the phone. I stopped buying theatre tickets, but if I must, I do. The reality is that I am fully engaged in life, but in small doses. I am tending my garden and hopefully will start going back to swimming again this week. I did do some qigong a couple of times last week, and I continue to focus on my social justice project.

I really don't see how my symptoms are similar to clinical depression! My brain is a bit foggy, but we've been there before, with 3 years' of chemo-brain. That's why I do brain exercises BrainHQ and Lumosity, so it won't get really bad. Actually, it is quite fascinating how, with Lumosity, you can track your brain function changing with the different medications. (Yes, it's fascinating for an ex-science/medical writer).

I am getting tired of people trying to analyse 'what's wrong with me' and telling me that maybe the Professor is not so amazing after all. Well, that sometimes does go through my mind, but then this week I remembered a similar situation, when I had very strange symptoms and it took 35 tries to find a medication that my body would tolerate. That was almost 30 years ago and I am still here, and the medicine still works for that problem.

The memory of those times brought into focus very clearly that I am going through the same thing. My sensitive body is rebelling against the onslaught of heavy medication. Eventually, we will find the right one, and until then, I just have to manage the best I can. For the first time, it really forces me to make those end-of life decisions that I have refused to face. Actually, that part hasn't been as hard as I thought it would be. It's been very enlightening, and I am at peace with it all. Now, it's learning to accept how other people react to my condition that's proving so bloody hard to deal with.

The truth is that I may live anywhere from 1-20 years and life it still beautiful. The devil is in the detail.

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