As with so many other things in life, a lot has changed since last time I published something here. Some are good and some are bad. This is what happens to everyone around the world. But how big of an impact a change has on your life differs a lot!
Oh, the good old days
I have just reread a draft of a post I wrote a year ago here. It never got published but according to its contents I had big plans. It’s all about spring cleaning, how to get things done in small steps when dealing with disabilities and how to make sure you don’t overdo it. That was only a year ago.
The year is now 2020 and what a year it has been so far!
13th of March was the first day of our self-quarantine. None of us have been ill with Corona (CVID-19) yet so that must mean that this is helping. The class mates of our kids have started attending school again since Monday (11th of May) but the 5 of us remain at home. Luckily for us the school understands our special situation and supports us by dropping off new school work every week and checking the old on the same day. Hopefully this can continue until the summer vacation which starts on the 4th of July.
All of this precaution is taken because of me using Ocrevus (Ocrelizumab). It supposedly helps keep my MS in check and so far the neurologist thinks that it’s helping. Unfortunately a well-known side-effect, because of reducing the B cell (certain white blood cells) activity , is that patients have a higher chance of getting ill with various other things. Particularly viruses.
And of course I am one of those unfortunate individuals who catches everything of virus related stuff people drag around. Every time our kids start back on school after a vacation, I get ill a week later with whatever they decided to bring home with them. To make it all even worse, it’s a known fact that people using Ocrevus get a tougher version of whatever virus they caught so it is that much tougher to fight, makes you feel so much worse than normal and takes forever getting rid off.
But why “good old days”?
Well, let’s get back on topic again, shall we.
So, around a year ago I was writing about how to handle a mess, cleaning the house etc.
A lot must have changed since then because now I can barely put a pile of laundry in the washing machine and smack it all in the dryer once it’s done.
And let’s not talk about how long a basket filled with clean clothes stands unfolded, laying in a huge pile awaiting the brave soul who will take upon them to fold it all. And as the days go by the pile decides to grow even more!
I have been granted 7 hours of house help from WMO (some sort of council department who handles these kind of cases). Plus another 5 hours smacked on top to handle transport to and from school for my youngest, who is 4 years old. And this is not without reason.
I’ve gone from handling our laundries to being the person sitting in front of the computer or television 90% of the day. When I try to do things like folding clothes, de-dusting a bit here and there etc. Then my whole body goes crazy! Sometimes I have a leg which doesn’t want to move. Other times I can barely get the words out of my mouth. Not to mention the constant feel of pain which I carry with me 24/7. The only thing that differs there is the amount.
My work capability is basically 0%. I am not even exaggerating!
I guess it comes without saying that a situation like this is difficult to accept. And it truly is. I have, for a while now, been speaking with a psychologist every second week. Though I am still unsure if it is helping, she seems pleased with the progress. Maybe there is something I am not seeing. It might be lost in that confused head of mine.
Besides the typical MS symptoms in my legs, arms and hands, which comes and goes depending on how stressed and busy I am, it mostly seems to be permanently active in my mind. I very rarely go out anymore. If I do, it all gets too overwhelming. The movements around me, the sounds, the light, everything! I have started attending less and less of the events on school and mostly manage to sent my mother-in-law as my replacement.
Last time I had to get my half-yearly medicine at the hospital, it was at a different hospital. Let’s just say that it was a really bad experience for me and if it hadn’t been for a staff member of theirs who saw me halfway collapsing on the hallway, completely confused and close to fainting, it would have been a catastrophe. I would have been laying there, helpless, not capable of explaining anything or calling for help. Locked inside my own mind.
Luckily the hospital staff were all sweet and understanding people. But the experience… I dread the next appointment. Especially as it continuously seems to be getting worse. Maybe Ocrevus isn’t helping as much as the neurologist wants to think it is. Though the last MRI did not show any new white spots in my brain. Could be a coincidence as well though. Time will tell…
That was a lot of text…
I would say!
Considering I wrote all of this in one go, I have now learned that that is a bad idea!
Now I am sitting here feeling all exhausted and having pain in my fingers and wrist. So this is probably as good as any a time to stop.
But as you can see, a lot has change since last!
Stay safe out there!