"It was hell to be so tired, and still care." Lois McMaster Bujold, Shards of Honour
I hate when I start a blog on a low note and go straight into all that is wrong with my world. I feel like the nature of all my correspondence recently has also been following the depressed debbie theme and I worry that i am bringing everyone around me down too. I just don't want to be that person who is always negative and when asked how I am doing always has crap things to say. I personally hate talking to people like that myself so I just cannot become that person but I fear that I am. But how do you get around some pretty big issues that are weighing you down tremendously? Do I pretend they aren't there? Is it my fault that I have been chronically ill for years now and am just being honest when I describe what is wrong? It is a conundrum in every sense of the word.
I have been feeling like between a rock and a hard place the last 2 weeks and struggling with some things. First off I got so sick last week and could not even make it up the stairs. I know there is something wrong when I can't even muster up enough energy to read to my daughter at bedtime. That is a sacred special time between the two of us that I rarely miss but I just couldn't do it. Every inch of my body was throbbing with pain and I felt just like I did when I did "sickplatin" last year. Being sick sucks but being sick when you have been sick for so long is even crappier. Your threshold is decidedly lower on what you can handle and I genuinely wanted to scream. Nearly two weeks on, I am not okay and there are no answers as to why. I have had blood tests, doctor visits and even a gastroscopy a few days ago which frankly sucks. I am sure some of you have had it before as we seem to live in a world where stomach ulcers and ailments are commonplace in our hyped up over stressed existence. Well having had most of the more heinous medical procedures on offer these days, this one was downright violent. I felt like a POW at Guantanamo Bay being water-boarded! They forgot to freeze my throat perhaps in the confusion of trying to find a good vein (which is never an easy job) so it hurt. You dry heave the entire time and it is just plain yuck. I signaled twice for them to stop during but of course once you all the way in, you don't come out until you are finished. Seeing as my stomach issues have become far worse in the last 2 weeks, we were wondering what we would find in there. Having been on max prescription anti acid meds for nearly a year now with no relief and regularly feel sick, I was certain something would be there. But there was nothing to see. No ulcers, no nothing...just a whole lot of stomach lining. So what the hell is wrong? Why do I feel nauseous all the time, why does my stomach burn like hell, why do I feel sick after every meal??? This can't just be normal and I am frankly frustrated. And I am so bloody tired. One of my doctors on the Palliative Ward who met me on Wednesday this week took one look at me and said that she had never seen me look so wiped out and exhausted as I did than. She isn't the only one to remark this as many others have said the same and the proof is in the pudding. I feel like I walking around with weights in my shoes and everything just seems to ache. What is wrong with me??
It has put considerable stress on me and my work as well and that is where I find things so hard to balance. I care so much about doing a good job and despite having been ill, I rarely if ever take an actual "sick day". If I have to be home with my daughter when she is sick, I will work from home and get the job done. Since I came back to work, I have been desperately, if not obsessively, been trying to show my worth there and not be seen as the sick girl who can't hack it. That is one of the real challenges of becoming so ill at a time in your life when you should be rising to the top of your career and everything else coming together. I thought that would have been me too but instead I am crawling up this mud hill and keep falling back a few paces over and over again. I feel trapped because I need to work to make a living and I need to do something that challenges me. But how do I do this and also put my health first? It seems impossible to me right now. It is clear to myself and everyone around me that I am not doing that at all and I am on a slippery slope, gambling on a dangerous game where I wonder if tomorrow will be the day my body just gives up. I know that I am not far from that point but I don't know what to do. I can't just give up and I don't want to. Giving something else to the cancer that ate into my life is not what I want to do. It has taken far too much already but at the same time how do I deal with this? Everyone tells me to put my health first but the reality is that my job isn't one where you can just not show up for a day, a week, a month...And I know I wont survive another absence. So I am stuck in this perineal hamster wheel going around and around day after day, getting angrier, more tired and more confused. What would I do if I didn't have to worry about my everyday commitments? I have some ideas about it but it is a scary question to ask and the fear of the unknown engulfs me. My job is such a big part of who i am and it is so difficult to start to see that maybe I need to be the bigger and more important part. To be honest I find this all scary as hell - contemplating the big questions and coming to terms with the fact that things are not the way they are and I am not the same as I was. Where do I get help navigating this rough road? Just being told to stop working isn't realistic for me. But pushing and pushing to the point where the gas tank is empty is ridiculous but that is exactly what I am doing.
This brings up something I think about often - how devastating cancer can be when it hits at a time like your 30s. I feel like your 30s are the time that the foundation is built from which everything else grows from. You establish your career, you buy a house, you can meet your partner for life, you start a family, and you start to think like an adult. I know that is what happened to me. So what happens when that grand master plan gets thrown out the window? What happens when you are so ill that you will never get back to the physical condition you were in before so that you can never work in the same way? What happens when you lean on savings to fill the gap due to loss of income because of unexpected illness and your buffer is suddenly gone? What happens when seemingly overnight your partner must become your caregiver and the nature of your relationship sharply shifts away from that of husband and wife? What happens when your young body becomes marred and permanently disfigured for the rest of your life? And what happens when you can't have the family you always dreamed for? That is what cancer can do when it hits at this supposed prime of your life. It is so destructive and ruthless in what it takes from you and is so far from being a gift in my mind. Things are never ever going to be the same for me and I am terrified. Maybe this is how it feels when you come back from war? You are so very different from the person who left to fight and now you must reintroduce yourself back into a life you no longer know how to cope with. Everything is different because you are different and have seen and experienced things no one will understand unless they were doing it right alongside of you.
What I can see now is that the last 10 months, I have been desperately trying to build back everything I lost even if it means putting myself and my wellbeing last. A friend asked me yesterday how I would feel if for some reason all of this intense stress and work resulted in me getting sick again. How would I feel about it? Would any of it have been worth it? The answer to that question is easy to answer but why is doing it so much tougher for me? I just find all of this so god damn hard to deal with right now and when you are exhausted everything seems to much worse.
I want to digress slightly here as I want to address some comments that came out of my last entry regarding fertility and babies. Many of you were so supportive and had many great ideas as to what else I could do. I did have my appointment with the oncology doctor this week and sadly they shot down every single one of my ideas. It was a blow and maybe it is time to seek additional opinions. Getting second opinions in Norway just isn't done. You take what the doctor says for gospel and never question it. But this is so final that perhaps i need another viewpoint.
I have a lot to think about right now. I just need to figure out what the next move will be.
And please don't take my lack of contact personally. I am struggling with everything these days and am just out of energy. I hope you will reach out all the same as I still value the support from my peeps and desperately need a pick me up.
A pretty wiped out OBB