TW: depression, ableism, general unhappy stuff
2018 was a challenging and scary year. I once again defied my doctor by seeking a second opinion on whether further surgery was going to help, and then going for it. I left the organisation I’d worked at for five years. I adopted a dog and a cat. I endured massive amounts of pain and dealt with debilitating medication-induced depression. I also learned some things.
1) The world forgets the sick and disabled
Not the most cheerful starter, I’ll admit. It’s true, though. Healthy people (and I’m sure I was guilty of this prior to really suffering from endo) are massively prone to making sweeping statements that reveal that they simply do not factor in the sick and disabled. For example, “everyone should be able to change a tyre.” “Saying things are too expensive is just an excuse.” “There’s no reason not to do this thing.” They speak from the perspective of a totally healthy person and totally forget that actually, disability and illness are perfectly valid reasons why people can’t do the things they are talking about. Whether they mean to or not, it is really exclusionary language and it leaves a lot of disabled people sitting there thinking, “What about me? Why don’t I factor in here at all?” It’s a really isolating feeling. It makes you think that the world does not care. We’re an after-thought at best.
2) Some people actively hate the sick and disabled
It’s an attitude I honestly thought had gone the way of the third Reich, but there are real life people existing today that think disabled people are a drain on society, contribute nothing, and therefore have forfeited any right to assistance, and, on occasion, existence. It was shocking and horrifying for me to learn and I’m a bit ashamed I didn’t understand it fully until last year.
3) Spoon theory is so applicable
I’ve previously written about spoon theory, and it honestly is such a useful way to describe how I navigate a day. I became particularly aware of it over Christmas. We went to stay with my husband’s family in Adelaide, and there were a lot of people there. I was tired from the drive (it’s at least 12 hours from where we live in the east), my pain levels were quite high, it was hot, and the noise and pressure to socialise just wore my spoons down before I’d really done anything at all. I felt terrible, because my in-laws were so generous and hospitable, and I ended up spending a good chunk of Christmas Day in bed because it was all I could cope with. I was spoonless. Without spoons. Physically, emotionally and intellectually completely drained.
4) You have to make the most of the good times
If I have a good day, I need to grab it with both hands and exploit it for all its worth. That’s the day I need to text my friends and ask if they are free after work. It’s the day I need to go for a run, clean the house, shop for groceries, walk the dog and cook for the week ahead. Those days are limited and precious and you never know when they will stop happening, so you have to carpe the heck out of that diem.
On the flip side, of course…
5) Life as a spoonie is a gigantic series of compromises and gambles
If I do too much on a good day, I risk guaranteeing that my next day will be bad. On the other hand, there’s no guarantee that it won’t be bad anyway, so maybe I should just go for it. On the other other hand, tomorrow I do have this thing I’m supposed to do so perhaps I should be extra careful.
It’s a similar story with medication. The mirena is jam-packed with wonderful progesterone that should dramatically slow the growth of my endometriosis. However, it now turns out that it could be responsible for a whole bunch of my pain. Meanwhile, my Zoladex definitely reduces my pain but menopause is not exactly a party, and adjusting to it is seriously rough.
6) A doctor you can work with is worth their weight in gold
I have seen four specialists since my initial diagnosis in 2016. The first one performed the surgery that sent my endo spiralling downhill. The second refused to believe that I could possibly have endo in me four months after my initial surgery and seemed like he didn’t believe my pain because he couldn’t provide a reason for it. The third was great for a while but it felt like, after the second surgery and sticking me full of progesterone devices, that he kind of lost interest and was a bit annoyed that I wanted more relief than I was experiencing. When I met Dr Edi-Osagie, I finally felt like I had found a doctor who listened and genuinely cared. The difference that makes is literally making me tear up just thinking about it. It matters so much.
7) Sometimes hard and scary decisions are necessary
Quitting my job was terrifying. Committing to a third surgery that would cost a lot of money was terrifying. Every time I take a new medication it is scary because I have such terrible trouble with side-effects. The decisions we have to make can alter our lives and our bodies, sometimes irrevocably, and there are so many to make. I’m scared every time, but I’ve got a lot better at taking the plunge because I know I have to.
8) Depression is harder than you can possibly explain
To someone who has never suffered that overwhelming apathy and bleakness it can sound silly, like something you should just be able to pull yourself out of with a little bit of gumption. You cannot. It’s like trying to sit up when a giant is stepping on your back. Even writing it out now I can’t actually convey what it feels like.
9) You cannot overstate the importance of support
I actually can’t imagine what my life would look like if I didn’t have my husband and my parents. Ok, I can, but I don’t want to, because I would be very poor, living in a pigsty if I hadn’t been evicted for not paying rent, not eating properly, and probably not having the strength to challenge my previous doctors when they started to give up on me. I certainly wouldn’t have the wonderful life I have now – and it is still a wonderful life, even if the tone of this blog post may be making people question how I feel about it.
10) You are stronger than you think
Novels and movies tend to romanticise suffering somewhat, and so you grow up thinking, “yeah, I’m tough, I could suffer.” Then you do, and you realise that actually suffering really sucks and you can’t do it after all…but then you can. Every day that you are still here is another day you’ve kept fighting. I re-read the phrase, “while there’s life, there’s hope” today, and honestly, I have never appreciated that quote so much. One day this particular illness may outstrip my capacity to live through it. I don’t think it will, but it could. But not today. There’s hope.
Did you discover anything new in 2018, either about you or about the world in general? Let me know in the comments.
Bubbles in the Brain 