I’m about 2 weeks out from my 5th embolization. This has been one of the rougher ones on me. Number 4 was a piece of cake compared to any of them. My surgeon wants me to come back for surgery number 6 in a month or two. No way I can handle that. I’m gonna try to shoot for maybe March. I’ve felt horrible pretty much every day of my recovery. I’m not sleeping well and I’m so uncomfortable. I feel trapped in my body. All of my energy is gone. I barely even wanted to pick up my phone just to write this. The first 11 days after my surgery I couldn’t manage to eat, so I literally started vomiting bile. Then my bladder decided to give me trouble for a few days. I’m grateful that those things have improved but I still feel like I got hit by a bus. I’m supposed to go back to work next week and I just hope I’ll be feeling well enough to do it. I’m slowly coming off of my pain medicine. I almost think it makes me feel worse sometimes, but without it I can’t sleep. This is not how I pictured I’d be spending year 24 of my life lol. Anyways, hopefully I’ll start to feel better soon.
I hope you feel a lot better soon 
Thank you!
My thoughts are with you, stay strong! I hope that tomorrow is better than today, even if just a little. Take care, John
Thank you!
Ohhh, @moonglow500 , not good. So sorry to hear this.
My recoveries from a bad outcome have been a bit like a rolling wave. For me it wasn’t that straight line of recovery, rather the bad BAD reduced, then came back, then reduced a bit further, then came back… Not that it was good, it was just less BAD. I tried to learn my new triggers (every time they’ve operated my triggers have changed somewhat). For example, after one surgery my balance was a mess. I had to give my brain time to catch up to my body. If I stood and moved in one motion, like previously, I saw stars, the room starts spinning and I find the floor with a THUD. The wife found me sprawled out on the floor on a couple of occasions. HINT: Don’t do that. Bright light was another trigger. Loud noise. Temperature fluctuations, etc, etc…
I found it can take quite some time for our bodies to adjust and as I’ve often recommended to others, the best way I found is ‘slowly’. Having a goal ie Returning to work is a good goal. But returning too soon can set your recovery back weeks (or worse). Listen to your body. It will tell you when it’s had enough, but you have to listen. The slower you take it now, the more your body has time to adjust to the changes.
Thinking of you.
Merl from the Modsupport Team
That makes a lot of sense, my recovery has been very much a touch and go type thing. I think I’ve had maybe one day where I have felt decent for a little while. But every other day has been some sort of discomfort or struggle. I’m trying to keep pushing forward, slowly but surely. I can’t wait to feel like myself again. Sometimes my AVM makes me feel like I’m trapped in my own body.
I have to agree with this.
And then I have medicos ask stupid questions like ‘So, what is a normal day like for you?’
"Normal? What the hell is that thing you call ‘Normal’. I don’t have a normal. I have to manage today, whatever that looks like. It’s been a long, long time since I can remember ‘Normal’. Every day is different.
I just need to manage for now.
Merl from the Modsupport Team
I can relate to that so much. I am constantly thinking back to before my diagnosis at 18. How I went about every day just as most people do, not in pain, not struggling, not worrying about my health, or the future. Now I’m 24 and I’ve been struggling consistently for years and so it has become my new normal. But I miss when my normal actually was normal. I would have never in a million years thought I would end up where I am right now, and not in a good way. Even on decent days, there’s still the underlying shadow of this condition weighing me down. The good days are few and far between. Looking to the future scares me now because I have had a taste of how bad things can get, and I know that sometimes things can get worse. But I try not to dwell on that too much because it’s not helpful for anything outside of spiraling. I just hate that this disease has taken away so much control from me, it has taken away the predictable and mundane that most people take for granted. Even when good things happen, for me personally, it’s more difficult to fully enjoy them, because my health is such a constant burden to me, but I’ve learned to live with it. However, I don’t think I’ll ever fully accept it. It has taken so much from me in ways that I never expected it to, things that most people don’t think twice about, like sleeping comfortably at night, or being with my friends and peers without feeling like garbage 9 times out of 10, or even just being able to fit into clothes that aren’t made for a deformed body. I wouldn’t wish any disease, let alone an AVM on my worst enemy. I’d give almost anything (within reason lol) to be free of this, and to be given back a normal healthy body. Being a prisoner in your own body is no fun. And your body working against you is no fun either.
Now that is exactly what I try to avoid doing. I say ‘try’ because I must admit I’m not always successful. But I kept looking at life as ‘Before vs After’ and that only served to reinforce my sense of loss. I had to get myself out of that mindset as I found it pulling me further and further into that dark hole. Don’t get me wrong here my mind still takes me there, but I (again) try to recognise when enough is enough. I can visit, but I can’t stay there.
A bit like you, I wouldn’t wish this on anybody. But the reality is that this is where I’m at, so I have to work within the limits I now have. I use my experiences as a bit of a guide for others ie “Don’t do this, because I did and here’s the result…” That’s why I recommend a slowly, slowly approach. I didn’t, I forced my recovery, I wanted to recover quicker, something went POP and I woke up back on the neurosurgeon’s table. Bad move. BAD, BAD move. Don’t do that.
Merl from the Modsupport Team
Thank you for your advice, I really appreciate it. I’m trying my best to take it a day at a time, and hopefully one day soon I’ll wake up and feel like me again. If I go back to work in a couple of days and I’m just not ready yet, then I’ll have to listen to my body and miss a few more days. I hope that’s not the case though because myself and my family need the money. But health is a lot more important than anything else. You’re right, I don’t want to find myself right back at square one or worse. I’ve been struggling to sleep well lately, between the pain, and also because I keep sweating like crazy in my sleep, and I’m not even usually a sweaty person. But the hard sleep probably isn’t helping me to feel any better and not to mention I’m still struggling with my appetite and with eating.
That’s all about right, it’s called ‘recovery’. I’ve compared it to a ‘Hard Reset’ of your computer. Your body needs to adjust to the ‘reset’ changes. The medical theory they often like to use goes something like “Operate. Fix. Return to normal.” and as a theory it sounds great, fantastic even. But the reality often doesn’t work to the same theory. It can be EXTREMELY frustrating, even soul destroying when we base our expectations on the theory, but the reality is far more shocking.
The medicos had me blaming myself, their view was " we operated, we fixed. So, it must just be YOU". As if my own self doubt wasn’t bad enough to then be told ‘It’s just YOU’. I have to tell you, it’s not just you. When your bodily functions go through that ‘hard reset’ it can take quite some time for us to find some sort of ‘normal’ again and it can be a horrible process to go through. For me it’s not like a ‘flick of a switch’ back to normal, but rather little adjustments over time to be able to manage better. But it took time. Just when I thought “Yea, I got this thing beat…” it would throw me another curve ball that would knock me off my feet, just to remind me who was boss.
I’m 10+yrs on from my last surgery and it still reminds me who’s the boss today. It tells me “Lay down or I’ll put you down” if I ignore those signs, my body puts me down hard. It can take days to recover from if I push too hard.
Merl from the Modsupport Team
I agree. I’ve really had to learn how to listen to my body these last few years. I’m finally starting to feel a bit more like myself, I’m mainly struggling with sleep at this point. I can’t eat much but broth and Powerade are getting me through. Tomorrow is back to work and we’ll see how it goes.
Have a good day today 
Take it steady.
Thank you, I will!
For me, sleep management has been a MAJOR issue. In my initial recovery I needed rest and regularly had afternoon naps, but then I needed pharmaceuticals to sleep at night. They medications worked and worked well, but if I take them 4 nights in a row, the fifth night I couldn’t sleep without medication. Or I needed stronger and stronger meds to get fully asleep. It’s a nasty cycle to get into.
Now, I ‘try’ to avoid the afternoon naps and aim to get a full 7-8hrs of sleep overnight. That’s the plan, not that the plan always work. It can also depend on my activity and environment. I’ve got a decent sized yard. I can got out and clean up in 20 C and be OK, but at 35 C I can cope for an hour, maybe 2, anything over 35 and I’m hibernating inside under airconditioning. I’m in Australia and it’s starting to warm up now, give it a month or so and we’ll be regularly having 35+C days. I’ll have to be even more aware then. The heat messes with my rest/sleep routine and that only adds to my load. I have learnt I need to manage around all of these variables, many of them outside of my control.
P.S. Hope the return to work goes as planned.
Merl from the Modsupport Team
I did okay with work yesterday, and I was glad to see all my coworkers again. I’m finally starting to get to a point where my sleep is returning to some semblance of normal, but I can tell that it’s still going to take time. That’s what I was struggling with, was needing the pain medicine to be able to sleep. And you’re right it is a vicious cycle.
Sounds ideal. Anticipation of the unknown is a real obstacle. Well done! Keep it steady!
Thanks!