It’s been over a year since my diagnosis now, a lot of things have changed into “habit”. After the diagnosis I was in shock for about three months, badly eaten, badly slept, spent the whole day in bed and cried, non-stop, every day.
I believe that, if you have no other choice, then you will accept it, life must go on, as we all know. You never get used to it, I wouldn’t say it gets easier, not at all. You get used to dizziness, walking aids, bad speech, bad energy, etc. And the problem is, that this state does not give you the opportunity, to get used to it, it progresses and changes constantly, quietly and sneakily. If all this would stay like this, I could organize myself with it. With MSA I wake up in the morning and wonder if something has changed. And not even that can I judge easily, many things depend on the day, many things get better during the day, and the later the day gets, the worse everything gets.
I become blunt, and become stoic in the actions, that just needs to be done. I try not to think into painful things. I switch the TV, when it comes to things, like people just living their lives. Planning holidays, buying clothes – I almost don’t care how I look, unlike in the past, where I put a lot of value on appearance. I recently received a newsletter about, how to master job interviews, with the question “Where do I see myself in three years”. Do I want to know, what will be in three years? Newsletter subscription deleted.
But it is unbelievable, half a year before my diagnosis, I took a follow-up course, wanted less work for better money. I can now “rub my certificate in my hair” – it is all useless. I don’t want to see people of the same age, planning a mountain tour, doing sports, decorating the house or planting the garden. Simple trivialities upset me, or I don’t want to see most of it. Recently I saw a popular TV show, where it is about making the best menu and cooking the other participants, in an impressive way. This is where the participants buy the best ingredients. And I think; I want to have this problems too. Or on the way to the city, I see people on bicycles, women in high shoes, people crossing the street quickly in front of a car. I used to cry about it, now I just swallow and look away.
There are many things I do not want to see, many things I do not want to know. I also don’t want to know if my ex has someone else and what they do. I wish him all the best, I wish everyone the best, I just don’t want to know or see anything.
So the question remains, whether it gets better or easier with time. For me I can say – NO. It just gets different, you get “quieter”. I can’t say “more sad”, I would say you become more “heroic”, you fight, even if it’s a lot of fighting for a little bit of life. I take it, which is, BECAUSE I have no other option, no other choice. Of course, there are moments of weakness and anger, when I find everything unfair, mourning about my past life… I just try to avoid it because it upsets me, crying gives me a headache if I wouldn’t have enough problems. Seeing old pictures, or hearing a piece of old music, is most of the time enough.
And then I still have hope, even if I see many things objectively and rationally. I don’t know how to fix everything, that is broken in my head, but I still have hope. I think it’s humane. It’s so nice to imagine what I would do if by some miracle I were healed. It’s a bit, like imagining what I would do with infinite money, if I won the lottery.
This is how I live my life, improvising to make everyday things possible. Dropping things and cursing, running against the wall and hitting my toes and screaming in pain, but never mind, go on. As the saying goes; stand up, adjust the crown and move on.