I wrote this last night and sent it to my counselor/therapist. We spent 6 hours on the road and I’ve got a killer headache tonight. The results of the day - read to the bottom…
Tomorrow we have to go back to Ann Arbor. We have to do this thing called a Swallow Study. Except for my morning meds, I’m not supposed to have anything to eat or drink for 4 hours before the procedure. I always have a dry mouth and wake up with a throat and voice that take some time to get moving again - even when I can drink something - it will be really swell when I can’t.
We get to spend 6 hours on the road and I get to swallow and chew stuff with barium in or on it. I’m sure that’s going to taste really good.
I don’t want to have to do this stuff. I just want to be normal. I want to have a normal day. I don’t want to have to spend the day talking to doctors and insurance companies and schedulers and all of that stuff.
I’m mad that I have to live with this. I’m mad that the crap I have to live with makes life harder for the rest of my family. I’m mad that rather than going to work or being creative or writing or just doing life, I have to once again spend the whole day being a patient. Being the guy in need.
God, I know you didn’t cause this. You don’t cause bad things. But I don’t get it. Why haven’t you put it all back together? What’s the purpose of this all?
I know, I see it every time I turn on or power up my iPad…
A quote from Toby Mac:
“God isn’t finished writing your story. So stop trying to steal the pen.”
But I want to write a different day into place for tomorrow. I want to have a day where my head doesn’t hurt. A day where I can be productive rather than be reactive to things that need to be followed up on.
I’m mad that I don’t get that for tomorrow. And maybe I need to be mad at myself for not being patient with God’s plan?
TJ
P.S. The testing showed that as long as I eat at a moderate pace and make sure food isn’t too dry, the risk of aspiration and pneumonia and hospitalization is minimal, so that’s a good thing. The rest of it is still a work in process.
I didn’t put it in there but I should have - how did my counselor respond?
Tom, it’s about time. Get angry, get ticked off, I can take it, God can take it. You’ve got a lot to be angry about, so let it out - it’s healthier that way.
Hi TJ, How are you? My “qualifications”: bleed at 14, 2 craniotomys, epilepsy, meds, both continuing, emotional/physical scars… I’m 59.
Boy do I know about anger! I’m trying to call it “frustration/dissapointment” now because it helps me keep it in perspective and not get worse.
I’ve been fired from 4 jobs in 6 months and just now missed a connecting flight inconveniencing my son so I’m a tad bit frustrated.
I wish there was some advice or cure. I got perscribed anti-psychotics, which were not appropriate. I ended up losing about 2 years, just gone, no memory.
I’ve learned to trust my instincts and question doctors, especially when it comes to meds. There is usually an alternative.
I hope the study helped. And if you ever want to rant, feel free.
I understand completely most days I deal with my deficits and have the attitude it is what it is but something will come up that should be easy and isn’t anymore and I just get angry… my wife and daughter just stand back and tell me the let it out and say sometimes I deserve to be angry; after I have my temper tantrum and meltdown it seems to reset and I’m good to go for a few months again.
I know how frustrating it can get, hang in there mate. I spent most of my life as a fighter, fit, active, then was teaching martial arts. When I had my seizure and was diagnosed, I thought my life was worthless. I know how it feels to hate the pain and all of the symptoms. We are all friends here and I wish you all the best…
Mick…
Let it out, however it comes, let it out.
At times I’ve had the male attitude ie “I man, I strong…” grit my teeth and push on, but eventually it all catches up with me and I get a double dose of ‘the shits with the world’. The problem with this is that I give ‘the shits’ to everybody else around me and that’s not fair on them.
I used to get what I call the ‘poor me’s’, which ended up as ‘poor me, poor me, pour me another drink…’ but I’m a horrible drunk, it just makes me more depressed. So that doesn’t work.
I tried to simply ignore it all. ‘Simply’ huh, no it ain’t that simple at all. When we live in our body and have to manage those ever present symptoms, ignore? it is impossible. We have a constant reminder.
If we don’t let it out that pressure just builds and builds and that can end up being explosive. I had someone ask me a simple question of the time and I blew up, telling them “What do I look like? Your bloody time keeper or something? Go and buy a F^%$# watch” DOH. I felt so embarrassed, it really didn’t matter who had said what at that exact moment, my cup overfloweth and it over flowed all over them.
We MUST let it out. But we must let it out safely, in a safe environment with people who have a bit of understanding of why we are frustrated, why we are angry with the world and finding that safe zone, with safe people can be difficult.
This can be that safe place.
This is probably the only place where somebody else actually gets what we go through.
my family sort of understands but they can never understand what it’s like to be in a body with a broken brain; it’s not like I forgot who I was and what I was capable of before all this happened to me… the hard part is I feel like I should be able to will my way through this and make it better but it just doesn’t work that way…
I think it’s especially difficult when an AVM isn’t visible, as people understand even less but the frustration happens for people with more visible conditions, too.
I knew a very clever senior manager at work who had Kennedy’s disease. By the time I knew him, he was aged about 50 and in an electric wheelchair as he was so frail (but remarkably made his way to work every day).
He passed away aged perhaps 52. At his funeral, I learnt he was probably one of the most active people I knew, as a younger man keen on hill walking, rock climbing and sailing. It was that background to a man, a great mind (actually) who was in an aggressive, early, enforced frailty that made me realise what an horrific change of fortune had befallen him and how frustrating his condition was.
I think it’s the same for any great loss.
So, shout out when you need. It’s fine. But know also that you’re not alone. Not here, nor in wider society.
And I agree with everyone above! Hope these thoughts help.
I also understand. I was angry at God for a while. I really miss the normal days. Getting up with no problems. Not having a headache ever day. Not taking a lot of meds. The best thing my counselor thought me was to learn to grieve. He had me write down all my anger and what I wish I could change. It sounds easy but it took me 2 weeks to do it and I only did it because he forced me too in a session. This may help and u might want to discuss with ur counselor. Hopefully it will help. Just prayed for u. God is good all the time.
