Hey team, itās been a hot minute since Iāve been on here. Many posts (naturally) mention other peopleās 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 āget itā. So hereās the rub. Iāll go long periods where Iām able to keep my mental health afloat and still find joy. But Iāve 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, Iām still largely home-bound. Perhaps thatās why itās hitting extra hard right now.
Itās been 16 months since I went from normal 30-something to life changing dramatically due to chronic vestibular migraine. Itās been 8 months since Iāve experienced any improvement despite all the steps Iāve taken. (If there are any newly-diagnosed reading this, donāt despair - I think Iām an outlier). Iām 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 āhope becomes painfulā and I can relate.
Sometimes I wonder if the path to acceptance isā¦ smoother ? for those dealt a more permanent health condition or a more certain prognosis. That maybe amidst the constant chorus of āAre you better yet?ā from family/friends and me offering some watered-down response, I havenāt been able to truly grieve all that Iāve lost and all that I may have yet to endure. Even writing that, it feels hyperbolic, as I havenāt been able to un-internalize the cultural perceptions towards migraine sufferers or those with invisible illnesses. But the ugly truth is I canāt count the ways this has impacted me, my relationships, my career, my hobbies, my body, my sanity, my outlook. I also canāt 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?
When I have a day where I canāt count the ways I have grown I donāt 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.
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 couldnāt 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 couldnāt 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, Iām glad you posted because I believe that connecting with others is the best way to keep going even when you donāt feel up to it. And I do think that is the name of the game - to keep going. Iāve probably shared this beforeā¦ but I created a poster for my room to try and keep me going, it read:
Donāt give up.
Donāt struggle.
Stay connected (with people).
Do your best.
None of those are awe-inspiring or anythingā¦ 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 Iād use #4. If I was thinking āwhy try at all?ā then Iād use #1. And if I was getting mad and frustrated #2 was best.
In conclusion, Iām 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!
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 itās 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 āIām never going to get betterā cycle of negative talk despite many people telling me to stay positive. Itās 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.
Iām not 100%, but living between a range of 75%-95% and thatās good enough for me.
It is important to acknowledge negative self talk for what it is and try to counter that with something positive.
āIām not getting better, my life is overā
To
āIām really struggling right now and things are on hold, but the brain is a slow healer and other people find relief. I should too.ā
Iām 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. Iām 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 Iāve 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
If you need anyone to talk to about it, feel free to PM me. Happy to lend an ear
Haha this is me too! Iām so super healthy, donāt drink or smoke, donāt 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 youāre right, other people are far worse. Itās perspective isnāt it.
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 canāt do all the things ānormalā people can do, and then I slip up and feel horrid again for a while. Iām 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 itās 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. Iām slowly coming around to accepting that I will not have children, and actually, maybe thatās 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 ābadā they feel for me. Despite this, I sort of feel like I have the upper hand - Iāve 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, Iām 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 doesnāt hurt. I have found a way to work less and still survive, and I spend a lot more time outdoors (even if itās 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.
Wow. Thank you all. Helpful things to ponder. I plan to come back to this thread when Iām 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 Sam Harris | Adventures in the Land of Illness
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 thatās why they choose us.
