I have been back home for about a month now and it is still taking some getting used to everything. From figuring out a routine with all the exercises to figuring out what has changed (and what has not). I think this is an important part of the process that people who are still going to Cognitive FX should be aware of; even though you are feeling much better, you're not done and coming home from treatment really is the start of a new phase. I thought I was prepared, but I was (and am!) still taken by surprise with how the whole process affects me.
So here I am, back home. It's funny how you can try not to expect too much beforehand, try not to get your hopes up, to keep in mind that you're just going to see how it goes and be grateful for every bit of progress. And then you come home and it turns out your mind has been playing tricks on you and your hopes were way (way!) up. This kind of sums up the past weeks. I am feeling all these improvements and I am doing so much more on a daily basis. I am so happy with all the little and big moments where I notice things that go easier, or just effortless, where they used to be really difficult or impossible just a little while ago. It is definitely not something I take for granted. If you're wondering what some of these changes are? These are some of the examples of the last weeks:
being able to go for a drink or lunch in a busy place without getting completely distracted from all sounds and people around me.
not using my ear plugs anymore.
running an errand without having to face consequences (in terms of headache, energy, etc.) afterwards.
not needing my grocery shopping list anymore.
not needing to go to the supermarket outside peak hours.
going to the beach on a busy day with a friend.
feeling very steady during pilates class (and not dizzy)
my recovery time is so much quicker. It used to be that busy days could haunt me for days or weeks. Now it takes a good night sleep.
In the last week I have taken up pretty intense gym classes (small group training) where I am just one of the group and not Maria with brain issues.
Some of these things, or let's be honest, most of these things are just 'normal' for most people. But for me they have been really difficult things in the last seven years, so to be able to just do them feels really amazing. At the same time my life consists of lots of training which takes up most of my day. There is still a lot to work on and a lot to keep up to make sure I keep feeling like this. There are times that I am impatient and I get pissed off. Not because I don't want to do the exercises or go to my physical therapy or whatever. I get impatient and pissed off because I want more hours in the day, because I want to start building on the things that have been so hard these past years. It will take lots of hard work to build everything up again, from my physical fitness, to building up my screen time behind a computer, to making these eyes of mine working as they should, to building up a bigger social life again. I can state here that I don't mind, but the honest answer is that I do. I feel like I have lived with all these limitations for seven years and the thought of living without them makes me so excited I want it to start now.
Apparently getting back parts of my energy and overview is making me very impatient ;-)
This may sound negative (and at times it is) but there are a few very important positive sides to this. First of all, it makes it abundantly clear why I'm putting in all this hard work. Secondly, the fact that I am getting this feisty, impatient and frankly annoyed at times, shows me something very important. I'm getting back this side of me that was just almost gone for the past years. I was kind of 'flat', there was no energy or mental capacity left for a feisty Maria. I would get sad, but not angry. I would cry, but not scream. I would stay quiet because I couldn't think of a quick remark back when someone said something that pissed me off. Ever since finishing treatment I feel so much clearer and more in control of my surroundings that I'm just more me again. If that makes sense?
Next to all of this, the thing I wished for the most, the thing I would hope for in my dreams happened. Maybe not completely yet but the change is very notable: my sensitivity to light and sound has become so much less! And that, for me, is a real game changer. If you ask me what I love: it's being around people and food. Going for dinner, drinks and just meeting people. All those things were very hard and it has become a lot easier. Because I am still wired to pay attention to where music comes from, how busy it is somewhere etc. I will notice that it's very loud somewhere and sometimes it's hard to determine whether it's normal to find it very loud or if I am more sensitive to it. I am happy to report that until now it has always just been loud and other people thought it was annoying as well ;-)
On a day to day level I still struggle with a few things. The most important being my headaches and the blurry vision (they usually come as a pair). These are present everyday, not all day but they do come and say hello at least twice a day. These symptoms are very likely to come from the vision problems I still have. I am doing lots of exercises to fix it but as with all things in life: it takes time. Next to the vision issues I still get tired pretty quickly and I am not very good at holding my attention for longer periods of time. Which just concludes that I am doing a whole lot better, but there is a reason why I need all these exercises and why I need to build everything up in a slower pace.
My first wine in months - celebrating the improvements with a dear friend