@lsengarai just wanted to say thank you so much for this message because fijally you are someone who understands! I could cry just reading your message because it’s exactly how i feel. There is no part of me that can accept this condition. How can i accept being in bed every day unable to do anything at all. That’s not life, it’s survival. No offence to others suffering with mav but if you can’t manage to work or even move about the house doing chores etc, or aren’t able to read a book or actually have a shower, what is there in a life like this that’s acceptable? I do not want to be bedbound all my life, thank you very much. I do not accept having to spend a life like this because who the hell would want to live like this? I’m not physically well enough to attend regular councelling sessions, i spend about 4 hours a day with eyes closed, trying not to move, trying just to exist with the dizziness when it gets bad until it subsides to become more moderate and less severe. I try to focus on the possibility that i will not continue to feel this bad, that i will find successful treatment that allows me to have quality to my life that isn’t there right now and then i will be happier, i won’t always be bedridden. Because that’s the only life i can cope with, the only life i want to live. The fear of being stuck like this, in this severity, is something i just absolutely can’t accept with every fibre of my being, like you described. I just have to try to accept it until i do feel better. It’s the possibility that i might never feel better that scares the hell out of me. And it feels like a real possibility, when so far treatment has not helped and triggers are unidentifiable. Forums feel like absolutely everone gets better through diet, lifestyle, exercise or pills, and if they don’t work you’re doomed. Bit i know this isn’t true. Actually, diet and lifestyle only helps less than 50% of migraine sufferers. Not everyone is triggered by stress, inactivity, diet etc. Many migraine sufferers have triggers no one can identify. Stress management, sleep routine etc helps less than half of patients and so i am not a rare, doomed case. There are others suffering like me and there is hope, i have to remember that. The internet doesn’t reflect reality and i have to remember that those finding success through the standard treatments are obviously going to tell their story online, those finding it harder and more illusive are just not sharing their stories, or are still searching. There are many more people out there unresponsive to treatments than it seems online. I am not to blame for feeling this bad, its not my fault, i’m not doing it wrong etc. I have to find what works for me, not what works for others, what works for me. And i won’t give up until i find it, until i get my life back. I think it’s important to channel that absolutele misery and inability to accept this life as a driving force to fibd treatment, to not give up, to not accept that life will always be like this, because it won’t.
Sorry for this rambling post, i just wanted yo put my thoughts down and hope that message helps others with this condition. Thank you so much for your message, it really helped me and i can’t express to you how reassuring it is to know someone understands.
What you said “feel like MY especially difficult chronic migraine is clearly just a really hard case that responds to no treatment. But of course this cannot be true; others have had equally difficult or even harder experience” is the most accurate thing i have ever read about this experience and describes exactly how i feel sometimes. That fear of being unresponsive to everything, of being an especially difficult case and could end up being told that nothing can relieve symptoms is such a real fear. Ironically, the consultants NEVER made me feel like that. They acted like they had seen people like me a million times before and that this would not last forever, i would feel better. It’s being online that makes me feel worried, being amongst other sufferers and reading about migraine treatments that pretty much tell you that everything you’ve already tried is all there is available, but obviously that’s not true. The consultants have knowledge and expertise and treatments that are not written about online. The Internet only provides you with very general info about conditions and treatments. Consultants spend years, decades, studying and gaining experience through their work at how to treat patients. We wouldn’t pay them so much if all they knew could be googled.