Changing Seasons

Hello loves!

The past few months have been a pretty draining time and overall, this entire year was definitely not my year. I had to deal with a lot of health issues and I wanted to use today's post to describe some of the mental impact of it. Unfortunately, I am still going through some of the health issues and I am sure that I will need some more time to really process it all. So maybe I will look at things differently once the benefit of hindsight kicks in.

Having known that I am chronically ill for years, it has always been incredibly important to me to not give my illnesses too much space in my life. I tried my hardest to reach a point, where I could forget that I am sick. And it worked - but only for a limited time. Inevitably, the illnesses' chronic nature meant that they returned. Sometimes, the medicine I took only worked for a while. Other times, my doctors and I thought I was doing well enough to go without medicine and that turned out to be wrong. What is so frustrating about this is that you as a patient feel so powerless in this situation. You did everything you could - waited months for specialist appointments, probably endured conversations with medical professionals lacking any kind of empathy (not saying every doctor is like that - but too many are), tried disgusting medicine with pretty bad side effects, and then it feels like it was for nothing.

I feel like I have gotten lucky until the past 1.5 years with my illnesses. I had flare ups of my rheumatism, but I mostly quickly found an ok-working medicine with my doctor. This enabled me to pull through my final year of law school. But even at that point, I was essentially living a 6-day-week instead of 7 days. I was taking medicine that made me sleep through an entire day as a side effect. It also made me feel absolutely terrible on that day and there was no chance of my doing any university work on that day. It was a frustrating experience to be put at a disadvantage in comparison to my peers for no fault of my own. And it also takes away from the quality of life you have. When you have less time available in general, there is also less you can do in your free time.

My first semester of my master's degree was a perfect illustration of that. I had very painful side effects from my rheumatism medication. It got so bad that I cried due to pain while sitting in various lectures. I still finished the semester with a perfect grade average, but it meant that I had essentially no life outside of university and being sick. Being sick can be very time-consuming. I remember having to wait over 4 hours at some doctors - and yes, I did have an appointment. When you're in so much pain that you sometimes can't even get out of bed, then you can't use your time in bed to work on your university courses. There is simply no way you could focus enough for that to make sense.

After finishing my master's degree, I had to undergo spine surgery for my scoliosis (a curve in the spine where it should look straight). The surgery is a pretty big one and there is a very small, but not non-existent, risk that you lose your ability to walk due to the surgery. I am pretty sure that such a risk, even if it is very small, would scare most people. It certainly scared me. Therefore, the time leading up to the surgery was already a pretty draining time.

But the time after the surgery was also very difficult and still is. I was basically in bed for the first one to two months after the surgery and since then, I am still in need of help in my daily life. It gets better, but it is a very slow process. Someone else still needs to carry my groceries. And sometimes, I can go on a walk with people. But other times, just going to my kitchen to get a glass of water is a lot for me. I guess that is not the future anyone imagines for themselves after graduating from university. It is certainly not what I worked towards. I was looking forward to starting my 'real adult life'. I thought I would be fully independent after university - finally no longer having to rely on my parents, but instead starting my era of being truly on my own. But I have instead found myself more dependent on my close family members than I have been in over a decade.

I basically went from already living on my own during my master's degree and living a relatively, but not fully, independent life to constantly having to make sure that someone can stay with me, help me get places, etc. Losing all your independence and your freedom from one day to the next is a painful experience. It does not kick in immediately. In the first few weeks, it feels similar to being home because of something like the flu. It is annoying, painful and sucks, but there is a light at the end of the tunnel. But when months start to pass, it becomes harder to see when you will finally be able to do things on your own again. I guess a lot of this also comes down to unrealistic expectations that were set by some doctors. I was told that I would be able to do my normal everyday tasks again 3 months after my surgery. Well, we're past that mark and I am far away from that. My GP told me after my surgery that he has never seen a patient recover that quickly from this surgery. But because the hospital doctors are less involved in the aftercare of patients, they sometimes tell them unrealistic timelines which they actually believe to be true.

That does, however, not change the fact that a timeline that is so far off is not helpful. It makes it difficult to plan who can help me when and also makes it hard to stay motivated. That last point may sound odd - surely, your health should be enough motivation, right? Sure. But it can often feel like things just won't get better. And your mental health can get really low when you reach that point. Add to that the feeling of being behind on a timeline that was never realistic to begin with and you start wondering whether maybe something is just really wrong with you and that is why you are not getting better as fast as you should.

It is, of course, also really difficult to stay somewhat happy when you are constantly in pain. Pain has become a constant companion and I guess the best analogy I have for it is a constantly screaming baby a few rows away from you in an airplane. You can sometimes manage to blend it out with the help of distractions, but it is constantly there and annoys and exhausts you. The longer the flight, the more sleep-deprived you become. In the beginning, you are still quite hopeful that the baby will fall asleep soon, but after a few hours, that hope begins to fade. By the way, this is no hate to people who have to bring their babies on long flights - it is annoying to everyone when they scream, but I am sure that no one is more stressed out by it than the parents and I really feel for parents in those situations.

Alright, I am honestly not sure how to end a post like this. I don't really have a great positive end to it (yet). I am hoping that this will change in a few months.

Lots of Love,

Elena