How do I manage school and work?

I’ve been in a lot of pain because of my AVM. I’ve been going back to school and I’ve had two episodes that have made it hard to focus. I’m working in a biology lab as an undergraduate student. The professor doesn’t take the time to go over the protocols with many of the students working in the lab. She expects us to know what to do (largely by YouTube). I was having a hard time. I told her I’m sorry, I’m just in a lot of pain. She said that my disability was physical and not an intellectual disability. Meaning, I should be able to do the protocol. I’m just in shock. I really like and respect this person.

I am behind in my classes. Up until this point, I’ve had a 4.0 in difficult classes. I feel like everything I’ve worked for is falling apart. I had to go to the disability office for accommodations. It is humiliating. I had to show her 20+ years of medical records and it was traumatic. I cried the entire time. Even with accommodations like extra time for tests, I don’t feel like I can manage working and having a normal life with this much pain and disruption. I’m trying. I have an appointment with the AVM specialist in a few weeks. I have known AVMs in my uterus and leg. I have a possible AVM in my GI tract. I am terrified that the AVMs are just going to keep coming back and I’m never going to be able to keep up with a job. I feel like I’m just living in fear of having the next episode.

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Well, I think you’ve got a lot going on. So I think you’re doing amazingly and (honestly) I’ve no idea about living with pain like you are.

I’m hoping some of your friends in the @Extremity, @PelvicAndUterine or @GastroIntestinal groups might be able to share the same troubles that they go through. Pain is a big part of AVMs in these areas. I don’t have any doubt that trying to focus through pain is going to be more difficult than anyone else (“normal people”) have to try to do. Some support sounds in order but the professor needs a bit of help understanding. I’m hoping you’re saying you’ve now got some accommodations organised.

My other big thought for today is that going to the disability office for help isn’t humiliating (or at least, it shouldn’t be) it’s just necessary. That’s what they are there for. Certainly never be humiliated by the need to seek out help. It should only be humiliating if they go about cross examining you in the worst possible ways.

Sending lots of love,

Richard

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Hi bunny. I’m so sorry to hear that you are having such a hard time. Is there any way that you could do your school work online, at your own pace? I’m in a similar boat with you as far as working goes. I’ve been trying to get on disability benefits for over two years now. My doctors said that because of the strain AVMs cause on your heart and body it’s not really a good idea to work too much in the first place. As far as the pain goes, are you on any pain medication or CBD/thc? Anything to help you cope with the pain? I know that the situation you are in is impossible, but don’t take on more than you can handle. Again, I’m so sorry that all this is happening to you honey. Hang in there. We are all right there in this with you.

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Hiya Bunny. I’m so sorry you’re dealing with all of this, it really is a lot to have on your plate. I have AVMs and VMs in my ankle and deal with regular pain, as well. I’m also in law school currently, and know how difficult it can be to focus when the pain is high.

First, I want to say your professor was ignorant and insensitive in her comment. I’d love to see her accuracy and recall while her nerves are on fire. It sounds to me like this professor expects her students to be colleagues - that is an unreasonable expectation she holds, which ultimately has nothing to do with you.

For what its worth, this semester has been brutal for me, too. I’ve also been falling behind and had to talk with my disabilities office. I also cried during the entire meeting, because the pressure had been so high that once I tried to let a little out, it all spilled out. It can be embarrassing and humiliating to admit you’re not “normal” (normal is an illusion) and that you’re not keeping up. But please try to remember that you’re comparing yourself to your able-bodied classmates who dont have these struggles to manage in addition to their schoolwork. I’ve found when the shame gets intense, it gelps to compare myself to another group I’m a part of. I may be behind my law school classmates, but with my medical and social history? Goddamnit it is a triumph that I’m here at all. The same is true for you.

As for what the future holds, that’s tough. It’s a constant fear of mine, too. It sounds like you have some things on the horizon that might change that equation for you though - so my advice would be while it can feel like the most necessary thing in the world to figure out right now (pain creates urgency afterall!), there’s no use trying to anticipate a future that hasn’t been written yet. Do your best to take it day by day, give yourself the permission to have “off” days, and check in with yourself periodically to honestly assess where your physical and mental health are. Theres no shame in recognizing youre doing too much and need to scale back, just dont count yourself out right out of the gate. :black_heart:

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Hey Bunny,
Firstly, I agree with all of the posts above, each has some very valid points.

Pain and it’s impacts have never been clearly understood, especially by those who have never been in such pain. I must admit, I too thought I knew pain. I had a badly broken leg, a compound fracture with the bone poking out of the skin and that was painful, but then I had neurosurgery and… just WOW!!!

Honestly, I didn’t think pain like THAT existed. I’d heard of people having migraines and sure I got headaches before, but post-surgery… just beyond belief. It was exhausting. I found I was micromanaging every part of my life, making little adjustments just to be ‘Normal’ and that was exhausting in itself (Carly is very correct when she says ‘normal is an illusion’). But the more I pushed my limits, the more my body pushed back. I had to learn to accept, accept that my body now ruled. It would tell me ‘Laydown or I’ll put you down’ and if I ignored it and kept pushing it put me down HARD, often taking me days to recover from.

Your lecturer’s understanding of disability merely shows her own ignorance on the subject. Her thinking is like each impairment only acts in isolation ie a physical disability only affects your physical health. Health can not and should not ever be seen in isolation, it can affect everything. I’ve often explained to others “Some like the A+B=C theory. Symptom A + Symptom B = Diagnosis C. But that’s way too simple. For me It’s more like A+B-CxD/E√F… and every one of them is variable…”. Some days I can have such clarity, it’s amazing. But then some days are like walking through treacle.

My advice: Use every resource available to you to your advantage. Those services are put in place to assist. Please don’t be seeing yourself using such services as a humiliation, in fact far from it. Personally, I’d be seeing burning yourself out, trying to reach your goals, without using the services available as a bigger humiliation. Once you’ve proven your criteria for the services you shouldn’t have to repeat that process, but I do admit it can be very confronting having everything on display.

I’m a male. My view was ‘I man, I strong’ (I call it the ‘caveman mentality’) ie ‘I can push through everything…’ but I couldn’t push through this and that really did my mental health no good. I eventually got to a point where I had to ask for help. I went and saw a psychotherapist. This was one of the best things I could have done, only wish I’d done so earlier. It helped me accept my new limitations and to make the needed adjustments to live within these limitations. I wasn’t happy about it all, but if I’d kept going, pushing on through I was only going to fry myself.

Some people can see asking for help as a weakness, but it’s far from a weakness. It shows that you’ve looked at your situation, identified that you need some assistance, then gone seeking such assistance. That’s not a weakness, that’s wisdom.

Merl from the Modsupport Team

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Hi! I have just written on your other post. My advice is one step at a time and don’t worry about the day ahead, let alone the next day. . Like us all, when pain takes over it stops us from thinking and the physical and mental exhaustion it brings make the idea of doing anything feels like a mountain to climb. Your professor is insensitive and ignorant and should be ashamed. It is also discrimination.
I am glad you took the steps you did and you shouldn’t feel guilty or ashamed but proud. Proud that despite what you’re suffering you are carrying on when others wouldn’t. Proud of your bravery, courage and strength, of your resilience which, by the way is one of the main factors to leading a successful life.

I know it’s hard and sometimes the stress of it all gets overwhelming. I get it. Some days you have so much to do, the anxiety rises and threatens to leave you crumbling. Stop, take a breath, push it down, empty your mind and think of nothing but your immediate next step. One step at a time. Literally. And if the pain is too much then go home. That’s that day. Next day start again. If this year is too hard, same, try next year. There’s always a solution, always a way. You’ll find yours.

PS: Can you hold a job and have an avm? Well I think it depends on your case. I am 49, I’ve worked all my life. Nowadays, I get pain every 4 weeks for 1/2 weeks at a time with 2 days of intense pain. I teach. I My life is not “normal” as such but I find that my job is actually a welcome distraction that helps me cope. If I stayed home I would curl up in pain and my life would be centered around my avm and my pain. I don’t want that. By the way my symptoms are that bad now due to pregnancies, age and the fact that my avm is affecting my heart. Heart complications is not very common with avm, it is one of the more serious ones but far from autimatic according to my doctors. However, 3 avms is a lot, have you been diagnosed with an underlying condition?

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From what you are describing your experience is similar to mine. i had my rupture while i was studying at university, it happened in the very last few years before I graduated, and everything that i have worked hard for goes to waste because of my AVM. but the moment I regained consciousness in the hospital I realized that I would probably not go back to continue my studies. I learn that higher education was a complete waste of time for me especially now that I have a crippling disability because of my AVM. I realized that the university I was studying in have little respect for disabled people like me as they forced me to walk all the way to campus to fill out a withdrawal application, which tells me they don’t care about me or my well-being just my money. However on the upside, I enrolled myself in a business Workshop that offered practical skills and make money on the go from trading equities as I learn in the class, it’s a better deal than university. anyway, my point is sometimes we feel that life has ruined our plans and everything is lost but sometimes it can be a blessing in disguise. You may feel all is lost because your studies are interrupted by your AVM but i believe there’s another window of opportunity open for you and that opportunity will be better than your current one.

Hi Bunny, You have a good spirit and a nice way about you. I couldn’t believe it when you said you “really like and respect” the person that alarmingly downplayed your disability. Good for you! If it was me I’d be reacting a little differently. Bless your heart.
I can’t tell you how many times I’ve read people here afraid of losing their “normal life.”
This may be a tough pill to swallow but there truly is no such thing. It doesn’t exist. But if it did, the truth is we’re all a bit damaged-- some more than others. We’re all going to break.
Where is this coming from? I just returned from a long hike in the Arizona mountains on a beautiful rocky trail. For some reason, I don’t know why, when I placed my feet I started really noticing the various rocks, hand-sized to mammoth boulders.
Bunny, every single rock was cracked or broken. In a way that added to their beauty and the wonder of the huge formidable mountain.
We’re all cracked or broken. And in my opinion that’s one of the things that makes us uniquely beautiful.
Of course all of my rambling doesn’t remove your pain and fear. I just want you to be able to say to yourself, “I’m cracked and that makes me even more beautiful.” Sorry I rambled so much but maybe it was for you, on some level, that I noticed the rocks on the hike. Best wishes, Greg

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