7 days till endocrinologist appointment.
It’s not funny anymore.
You know, after being unwell for a number of years, I often fantasised about them magically finding a reason for why… I thought that my life would be "fixed" as soon as we figured it out. That I would suddenly start on a journey to wellness and be well, and the fun of figuring it all out myself would be exhilarating.
But you know, the emotions around how I feel suddenly having a name, knowing the prognosis and treatment.. and knowing what’s ahead… even though I am a little bit relieved, I am also having trouble coming to grips with it all.
I feel a lot of anger. Uncontrollable anger, of course, being a symptom of Cushing’s as well so it’s understandable (will get to that later)… but… yes. Lots and lots of anger at how this could have gone so long without being noticed. I am hoping that with treatment will also come forgiveness and help me to move past it… but right now I just feel anger.
Every day is a challenge – partially because of the rapid progression that I am facing, and partially because there’s just SO much stress external to my illness, on top of it, that honestly? I am surprised I haven’t gone postal.
But I kind of have. And still might yet…
Because I am not myself. You may as well nickname me Charlie, because I am part of a Flowers for Algernon-style brain regression that, quite frankly, is scaring the shit out of me & Jason. I am still functioning, sure, but I am nowhere near the level I used to be.
I have gone from having a photographic memory, and razor-sharp recall to the point of never needing an address book or calendar… being able to commit a million things to memory very quickly… to being a bumbling mess, completely dependent on my calendar, forgetting what I was saying mid-sentence, forgetting how to spell & type (well, not completely, but… having to stop and focus on it rather than it be automatic)…. as well as…. and here’s the scary part…. forgetting entire conversations.
What’s more, the high cortisol causes me to be paranoid, angry and seeing/hearing aggression in everything. I once woke up at 2am FURIOUS for no reason at all.
Which has been fantastic for my marriage, I might add.
And I can barely walk by the end of the day. My lower legs and arms hurt so much that I walk like I am 80 years old.
I bought a cane to use at home. Although it will be a cold day in hell before I use it in public. I would rather not go out than have to be visible like that. I mean, I have so far had to deal with not being as alert as usual and have so far managed to hide it. but a cane? That’s out there. That just screams "I AM BROKEN!" at the top of my lungs… and right now I am not willing to face the fact that I sometimes… can’t walk.
My biggest concern and fear right now is that people might make judgements about my capacity to run my business or do my job before they even talk to me. I mean, I am laying out all of this on the Internet, posting it on Facebook, so my capacity (or lack thereof) is certainly open to interpretation… but I guess that all I can say is that so far, despite some pretty scary shit, I am still getting stuff done.
It’s the luxury of a home-based desk job, where as long as I have most of my faculties, I can still deliver. The nature of the disease is also that there are periods where I achieve a lot… and then periods where I just need to rest. I am learning to be kinder to myself and NOT work 18 hour days… but also to just accept that there will be days where I will not achieve much… but then there will be days where I will get everything done… so it all evens out in the end.
Obviously the pressure to be the sole income earner for my family doesn’t help my condition, but in a way, my work is also a welcome distraction…. because I love it. But when it becomes an issue, I will start to communicate that, but I am worried about the consequences… because, you know…. business is brutal.
I am so over MYSELF right now. I have realised that I have become THAT person that is always in pain, always tired or depressed, and that boring person whose sole focus is surviving another day without breaking down. I have to be kinder to myself and realise that it’s OK to be unwell… but like all long-haul illnesses, people fall away pretty quickly after the initial dramas.
It happened in 2006 when I was in ICU – everyone was around when I was in a coma, because THAT BIT WAS INTERESTING. But you know, the support falls away over time, and you just become that person that people avoid because you really don’t want to hear about how tired THEY are, with their normal bodies, and normal problems… and end up just being a recluse… because that’s just easier than facing the unfairness of other people never knowing what true, relentless exhaustion feels like.
I am sure they mean well, but you know…
Like right now, as I type this, my face feels like it is on fire. Yes, like BURNING FIRE. It goes from burning to freezing to numb. But you know, noone wants to hear it. Even doctors roll their eyes when you mention your symptoms and they are supposed to be scientists! Try telling a family member who didn’t finish Year 10 that when your skin is burning from hormones it is not a matter of taking off a jumper, or drinking water… or in the case of weight gain, just eating less. It doesn’t work that way…
So I just end up feeling frustrated, misunderstood, and better off if I just hang out on my own. Because loneliness beats well-meant-but-kind-of-offensive advice any day of the week.
And even as I write this blog post, I know that very few people will actually read it… because you know, it’s hard. I know they’re tired. And stressed. And Christmas is stressful… it’s all relative. But you know…
Part of my coping is that I remind myself that it could be worse.
It could be worse.
But it could also be a hell of a lot better. And then I wonder how much worse it needs to be before I actually get to complain.