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Symptom Changes over lifespan

  • By tinyhiker87

    Hi everyone,

    This is my first time posting here so please forgive me if screw up my post… I got diagnosed with chronic intractable migraine without aura, January of 2017. As many of you know the word intractable means “hard to control/treat”. I have been through several different categories of medications, physical therapy, chiropractic care nothing has worked. I now get Botox shots every three months and manage my pain with narcotics and anti-nausea medication. I honestly have become kind of a shut-in. I feel like a shell of my former self, because I can no longer do a lot of the things that I used to enjoy before my migraines started. I have other health problems that existed before the migraines also. I am not happy with how my life has changed because of chronic pain, but I am learning to be self-compassionate and to try to see the good in my situation. My partner seems to have alot of difficulty understanding what I am going through, even though he has been with me in the hospital and has seen me miserable at home in bed, hiding in the dark with earplugs in. He has never had any serious health problems nor has he had to take medication or have any sort of treatment for a long-term health problem before. I know that it is difficult for him to understand what is happening to me because he does not have any personal context through which he can relate to my experience. He has also been very frustrated that the situation has not been resolved as of yet. My health situation has been very hard on our relationship and has been a huge financial strain on us as well, since I am no longer able to work. My partner stated recently that he worries he will be married to a hypochondriac (when we do get married) and that he thinks I like going to all the doctors appointments and being sick, etc, which couldn’t be further from the truth. I try to keep him in the loop when I have appointments or have new medication or treatment so that he can understand what is happening. I have also tried to educate him as much as I can, with the hope in mind that it may make him feel better to have more knowledge about what is going on, so that everything feels a little less out of his control (he says he often feels helpless, which I understand). Yesterday, he was frustrated that none of the medications or treatments have worked so far, especially since I started a new treatment last month, that we both had high hopes for. I love my partner very much, but his recent, comments and lack of ability to put himself in my shoes are leaving me at a loss. Does anyone have any advice about how to handle someone (like a significant other) that just can’t quite understand what I (and others in the migraine community) am/are going through? I feel like I have tried everything. Any advice is appreciated!

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  • By pattyxyz

    Ohh dear! You have a health problem and your partner is freaking out. At least he is telling you how he feels. It also sounds like he is completely unconscious and ends up accusing you and blaming you for not being able to be “cured” . Be careful. Do you really want to stay with someone who cannot be supportive? This is a huge test. Just like you all of his dreams of what was to be just vanished. Now there is a new reality. My only suggestion, if you want to stay in this relationship: therapy. Having a therapist involved gives each of you a sounding board, someone to turn to when it all becomes to much. I’ve stayed in therapy since I was 18. I’m now 80 and still, whenever necessary, check in with my wonderful, life saving therapist. Friends and family won’t and don’t have the skills to handle all the emotions. They will innocently give advice as if they know what is best. Remember, There is no blame, no shame. You are both doing your best! Feel my hug🙏🏻

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    • By tinyhiker87

      Pattyxyz, I just wanted to say thank you so much for your kind and thoughtful response. You really hit the nail on the head. I had suggested couples therapy to my partner previously (because of how much we’ve been struggling) and my partner stated that he is not comfortable talking to a stranger about his feelings. I’m afraid that this relationship may have run it’s course and didn’t pass the test, because I have no other way to get him to understand that he does unconsciously blame me for not getting better and/or that I feel alone and unsupported by him in a very difficult time. I will most likely seek therapy on my own (I have been going on my own throughout my migraine development. I feel your hug and want to let you know that I am grateful to have a wonderful community here to turn to for help when I need it. I hope that I will be able to help someone else the way you have helped me. Thank you ❤

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  • By Nancy Harris Bonk Moderator

    Hi tinyhiker87,

    Welcome to the Migraine.com discussion forum and sharing your journey with us!

    Living with chronic, invisible illness can take it’s toll on both patients and their loved ones. It’s vital for our family and friends to understand migraine is a genetic, neurological disease that currently has no cure. I wonder if your partner thought of migraine disease in terms of diabetes or epilepsy? A disease that is managed, not cured. Here are a few articles that may help; https://migraine.com/living-migraine/education-day-interview-joanna-kempner/ and https://migraine.com/blog/you-just-do-not-understand/.

    There have been good suggestions from other members given, probably a lot to think about. Couple therapy would probably be a very good idea before a wedding. Here is an article about migraine and relationships; https://migraine.com/blog/getting-romantic-partner/.

    I hope this helps, please keep us posted on how you are doing,
    Nancy

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