There’s a girl I had been watching on YouTube who had been struggling with a rare, progressively growing tumor and her story reminded me a lot of the struggles I go through. And today I saw that she posted a video and somehow after 3 years her tumor is completely gone, no signs of it on the MRI, all her pain is gone. I’m so happy for her, and I don’t even know her. I always dream about what if something like that happened to me. I can’t imagine how it must feel to be blessed with a second chance at life, to go from being debilitated to free again. I’ve been recovering from my surgery for 2 weeks now and feeling horrible throughout the majority of it, but seeing that news really made me so happy.
I nearly wrote back to you about miracles and magic yesterday. They both seem rather thin on the ground these days, don’t they, but you could do with one or the other. If I had a key into such things, you’d have been fixed yesterday!
I think what I’d say today is, by all means ponder a miracle but don’t put all your hope into it. I hope you’ll get better but we all know that recovery takes longer than you’d want it to. I hope you’ve got some great recovery still to come. I also hope that your next operation is not as hard as this one. That seems unlikely at this point, doesn’t it, but I can hope for that.
I think the key mindset is that of being determined to get better rather than desperate to get better. My wife solidly occupies the desperate rather than the determined and as an observer, it just isn’t the way to be!
Other than painkillers, have you been given any other advice on what to do to help yourself? Some of it might be to try to be active – even if that is going for a small walk, nothing remarkable – and doing things to keep positive. I had a carpal tunnel release surgery prior to my AVM adventure and part of the trouble of CTR is that the hand is full of nerve endings and very sensitive. Actually stimulating my hand, my scar, by scratching it lightly or making it touch different textures was part of the recovery to teach it what a texture was like versus what sharp pain is like, otherwise you can end up with it believing that everything is sharp pain. I had to do that rehab for my hand. And it’s fine. During the process, it was hard because my hand was interpreting things as more acute than it should. So maybe ask the doc if you should accept some of the pain as something your body needs to discard, that it needs to learn isn’t something to alert you about, rather than not work through that at all. Trying to avoid the pain completely might not learn the lesson you need. I know nothing about this at all, by the way, I’m just shooting ideas.
Lots of love,
Richard
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I agree with you! And yes, I’ve been trying to keep myself mobile, going out to the store and short walks and such, sometimes it’s challenging. I’m only taking my pain medication before bed now. For some reason my pain is worse at night time. I’m supposed to be going back to work next week, and I just hope I’ll be feeling more like myself again. Getting back into the groove and being on my feet again all day after having been out for two weeks is a entire other thing I’ll need to get re adjusted to. But I’m trying to remember that the only way out is through.
I think being busy and being distracted from introspection is a good thing, so if you can focus on whatever it is that you’re doing and any pain is low enough to not encroach in your consciousness while you’re working, then it’ll be fine. If you’re in noticeable pain during work, it’s going to be more challenging.
It doesn’t matter whether it is work that takes your mind off things or doing some other activity, the key is to be busy doing something that you’ve less time to think or worry. That’s how I work best, anyway. So if you find you can’t work, it is still going to be important to keep occupied in the mind in some way. Or, it would be for me.
I agree with you, because even though I know rest is important, the more I just sit and stir I feel even more uncomfortable and anxious.
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The main parallel I can give you is kinda Jan to Mar 2017. I was waiting for an embolization with the risk meanwhile that I might have a stroke. I was getting dizzier with the impact of my DAVF and I had a loud whooshing noise in my ears, especially at night. It was like trying to sleep while the washing machine was busy on spin and pump out next to my head: sleeping was very difficult. I was still working but when there was nothing to do in the evenings, at the weekend or at night when it was quiet, my mind filled up with the what ifs and I was busy listening to the whoosh-whoosh. It’s not good.
So I decided that for my leisure time, I needed to keep myself busy. In particular, I decided that I needed to try to give my mind something to keep it busy. Doing boring, repetitive stuff or things that didn’t need thought wouldn’t distract me enough. So what did I do? (I’m crazy, remember!) I designed and built a radio-controlled digital clock! I’ve never successfully built an electronics board of any complexity, so it was quite a challenge. I designed it, bought the parts off the internet, made mistakes, found issues with the idea but basically kept my brain interested in that – at least some of the time – and built a little electronic clock that synchronised itself with a long wave radio signal from Germany! Oh yes! Crazy, remember? It worked. Eventually!
So don’t go mad, don’t give yourself an electronics project to do but find something to keep your mind busy. I can’t tell you that it was remarkably successful – you know, I still worried about the future – but I do think that as much time as you can keep your brain occupied is time spent not focusing on yourself, not being overly introspective, not looking for what’s the matter.
Have a think about an affordable hobby that you can distract yourself with. The internet is a fantastic resource for things to do.
You’re a lot more resilient than I am, because that whooshing would have driven me up the wall! I occasionally get some ringing in my ears, maybe tinnitus and it makes me mental. I don’t really have the money or the space for any hobbies so to speak, I’m living on my mom’s couch and I don’t have a bedroom or anywhere for storage so I have very few possessions. In the warmer months I enjoyed taking care of flowers, even though I was horrible at it and they all died. 
But the routine was enjoyable, however once I started to work I had a harder time keeping up with it because I would be so exhausted. I took French for a couple of years in high school and I really loved it, so I downloaded Duolingo on my phone and I’ve been trying to get back into practicing again, although some days finding the motivation is harder. I also downloaded Libby so that I can borrow library books to read, since I don’t have a car and I can’t make trips back and forth to the library. My main issue as of late is finding the mental energy to do something. My mental health is very unsteady this year and I pat myself on the back for getting up and brushing my teeth, showering and going to work. Some days that feels like an accomplishment worth being proud of to me.
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It makes sense. You’ve got to live within your own mental energy limits as well as your financial limits. I think I’m trying to say that finding something, if you can, to keep your brain busier rather than idle helps a bit. It’s very easy to get introspective if there’s nothing going on. If you’ve time and energy, finding an imaginative book in the library might help a bit.
Never give up. Getting up, getting ready and getting out of the door is first class 
Richard