Not ok

Hey team, it’s been a hot minute since I’ve been on here. Many posts (naturally) mention other people’s triggers, which, to be honest, makes the world feel like more of a minefield than it already is. But I know there is a great community here of people who “get it”. So here’s the rub. I’ll go long periods where I’m able to keep my mental health afloat and still find joy. But I’ve been struggling hard lately. I think for a while the pandemic kept the FOMO at bay, but as everyone else begins to return to normal, I’m still largely home-bound. Perhaps that’s why it’s hitting extra hard right now.

It’s been 16 months since I went from normal 30-something to life changing dramatically due to chronic vestibular migraine. It’s been 8 months since I’ve experienced any improvement despite all the steps I’ve taken. (If there are any newly-diagnosed reading this, don’t despair - I think I’m an outlier). I’m starting to feel like Sisyphus, clawing my way through each day.

The possibility of regaining my physical health was always the carrot I clung to. But as the months stretch on that possibility seems dimmer. I remember another migraineur recounting in her blog that at a certain point “hope becomes painful” and I can relate.

Sometimes I wonder if the path to acceptance is… smoother ? for those dealt a more permanent health condition or a more certain prognosis. That maybe amidst the constant chorus of “Are you better yet?” from family/friends and me offering some watered-down response, I haven’t been able to truly grieve all that I’ve lost and all that I may have yet to endure. Even writing that, it feels hyperbolic, as I haven’t been able to un-internalize the cultural perceptions towards migraine sufferers or those with invisible illnesses. But the ugly truth is I can’t count the ways this has impacted me, my relationships, my career, my hobbies, my body, my sanity, my outlook. I also can’t count the ways I have grown but on days like today that is of little solace.

For those of you who may be able to relate, how have you handled the emotional fallout of life handing you the MAV lemons? What has the path toward acceptance looked like for you?

Thank you for listening <3

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When I have a day where I can’t count the ways I have grown I don’t want to look for a smooth path to acceptance. I shake my fist at fate and get very angry about it all. I stamp my feet and storm off in a huff.

But tomorrow is always different.

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The Emotional Toll

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Acceptance for me was changing my life to accommodate my condition. It was doing all the things, whatever it takes, to move the needle in the right direction. And this is where depression set in for me (and probably you), because months would go by (or years in my case) where I couldn’t move the needle much at all. I am a person with fairly high discipline and motivation and this was the first thing in my life I couldn’t begin to solve or even avoid. I was taught that if you put in the work you will get something out of it. But with MAV (or any tricky chronic condition) there is no guarantee hard work will do anything at all. It reminds me a bit of the concept learned helplessness.

Of course, I’m glad you posted because I believe that connecting with others is the best way to keep going even when you don’t feel up to it. And I do think that is the name of the game - to keep going. I’ve probably shared this before… but I created a poster for my room to try and keep me going, it read:

  1. Don’t give up.
  2. Don’t struggle.
  3. Stay connected (with people).
  4. Do your best.

None of those are awe-inspiring or anything… but on any given day when I was really struggling I could find some wiggle room in my condition to reframe my attitude for the better. If I was depressed, #3 was the best. If I felt like I was falling short in work or family I’d use #4. If I was thinking “why try at all?” then I’d use #1. And if I was getting mad and frustrated #2 was best.

In conclusion, I’m not sure I ever accepted things that well. I suspect I handled things about the same as anyone else, there is no special way to do it. For me it was more about how to keep going in hope of better days, and finding scraps of joy and meaning en route. Maybe that is a form of acceptance, I dunno. But I do know that you are doing the right thing to reach out to others. Stay connected!

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Great words of advice.

Today, I had to present something to my class of 15-18 year old boys about negative self talk. The difference between the thoughts of an optimistic and pessimistic person.

I found myself using my own experience a lot. I told them, and it’s important they know this, that teachers/friends/parents are not perfect themselves and often struggle too with negative self talk.

They all know I was absent for 12 weeks at the end of last year. They know a little bit about why, but I said to them that I caught myself in the “I’m never going to get better” cycle of negative talk despite many people telling me to stay positive. It’s hard to stay positive when nothing is happening or working to get you better.

Then I said, and it was a revelation to me too, that I did make it to the other side. I need to see this as a lesson in life that things take time.

I also said that I may well be back to struggling again soon, but this lesson should help me the next time.

I’m not 100%, but living between a range of 75%-95% and that’s good enough for me.

It is important to acknowledge negative self talk for what it is and try to counter that with something positive.

“I’m not getting better, my life is over”

To

“I’m really struggling right now and things are on hold, but the brain is a slow healer and other people find relief. I should too.”

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Well done you for pushing on with your job like that!!

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I’m around the same age, so I sympathise and understand your thought train. For me personally, there are a few key thoughts I play in my head which helps me:

1. Gratitude. I remind myself that it can always be worse. There are people who are deaf, blind, no limbs, terminal illnesses etc. I’m grateful that I can still do most things

2. Life is not a smooth path for anybody. Even those who have no vestibular condition, or no ailments live a rollercoaster of a life. Everyone has problems to deal with.

3. Personally, I believe everything happens for a reason. For example with myself, I work in a high pressure industry but I’ve eased off the gas since mine started 2 years ago, and I probably look after myself better than most normal people. As a result I may actually end up living a healthier, longer and happier life! Alot of my friends are chugging down the beers and puffing awake on cigarettes, and here I am with my supplements and decaf coffee :sweat_smile:

If you need anyone to talk to about it, feel free to PM me. Happy to lend an ear :+1:

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Haha this is me too! I’m so super healthy, don’t drink or smoke, don’t stay up later than 10pm, supplements galore, and over there in the other corner are my friends - drunk on weekends, late nights, after work drinks, up all night etc.

Yet I still feel like crap and they pull up fine! But you’re right, other people are far worse. It’s perspective isn’t it.

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Hi Naya,

I echo your struggle. I am around your age too and all this started for me around 6 years ago. Throughout this time the MAV has changed and morphed, but then I think so have I. Sometimes I go for months of feeling pretty well, and then I forget for a moment that I just can’t do all the things “normal” people can do, and then I slip up and feel horrid again for a while. I’m in another challenging patch at the moment, and negative self talk is something I have to consciously address every day. At the moment, meditation is really helping, as it’s focused on acceptance. Someone on here recommended the Waking Up app, and I really like it.

My MAV was triggered by recurrent miscarriage, and now I have found out my egg reserve is too low for IVF (so I may hit early menopause at any point!), as we were considering surrogacy. I’m slowly coming around to accepting that I will not have children, and actually, maybe that’s not such a bad thing, given how much I have to put into self care every day. 3 years ago I got awful back pain - a slipped disc from lack of movement due to MAV. My friends and family are amazing, but I do sense how ‘bad’ they feel for me. Despite this, I sort of feel like I have the upper hand - I’ve been through the wringer and am more robust as a result. Before I got MAV, I was honestly a bit of a slob - way too much alcohol, junk food, work stress, late nights and I LOVED smoking. Now, as everyone else describes, I’m as clean as can be (most of the time), I take loads more time for self care, I am forced to do gentle exercise every day so my back doesn’t hurt. I have found a way to work less and still survive, and I spend a lot more time outdoors (even if it’s just sitting very still in the sun in the garden). I feel less pressure with the thought of not having kids, or maybe adopting in the future. All in all, I feel a much greater sense of peace. And I agree with others, healthy living is preserving us, hopefully, from future ailments!

I like the suggestion before about staying connected. That feels SO important. Make more space in your life for people who are conducive to your recovery and general wellbeing. Things will start feeling a little easier soon, that always seems to be the way. Sending you lots of love.

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Wow. Thank you all. Helpful things to ponder. I plan to come back to this thread when I’m having another no-good-very-bad day. @springerspirit I really like the Waking Up App. The creator, well-known neuroscientist and philosopher Sam Harris, happens to be no stranger to MAV Adventures in the Land of Illness | Sam Harris

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I can feel you! Its quite ironic that those who are health conscious are the one getting illness. Maybe because those illness believe that we can fight them that’s why they choose us.