Story of my life, and You?

success

 

I am not nearly the consistent blogger I planned to be.  Not because I don’t have things to say, but because in totality they all sound so unreal and maudlin, I run out of ways to get my mind in a better place and move forward. As I go through the daily challenges and struggles of living with my coexisting conditions, there are a few things I’ve observed, noted, learned or need to learn:

1. Get a good doctor, especially a neurologist. Mine is amazing, and is baffled at how clueless some of my family is.

2. Does your family not understand your epilepsy? Aspergers? A-CC? Anxiety? Any of the above? Join the club. Talk to your doctor. Go on FB. Go on LinkedIn. Get the information you need. You are not wrong. they are.

3. Advice. Do you get a lot of it? Unwanted? My first question is , do you fully understand a seizure? Do you know what Adult Asperger’s Syndrome is like? Do you know about Agenesis of the Corpus Collosum? Until they can talk my talk, you don’t give me advice on how to walk. Try listening then give suggestions.

4. Relax. (I really suck at this one) Even when I’m relaxing, I’m not  relaxing. I don’t know how to decompress or unwind. I need to learn how to meditate because I just get antsy and jittery, and have only thought about any past trauma when I’ve tried. That’s pretty counterproductive, I’m sure.

5. Yoga, Out of the question. I have no balance, no coordination. I even asked my chiropractor. He thinks it will be YEARS before I have the balance for that. Open to other ideas!

6. Headaches. I get migraine, cluster, tension and now sinus. I’m adept at deciphering them all.  What do you do for yours? I’m looking for holistic things. Prescription stuff knocks me out, Exedrin makes me jittery.

7. Isolation. Yes, family again. I’m the pariah because I have all the above and it’s “nothing,” and ” it happens to everyone.” Cut out from everyone as that’s not my philosophy. Don’t make it yours either.

#stigmafighter

#imnotwrong

 

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6 thoughts on “Story of my life, and You?

  1. Pingback: Story of my life, and You? | thegamesmybrainplays

  2. You’ve learned a lot Gerene, that’s good. But it sucks so many people in your life don’t get it. About the headaches, these totally may not help depending on the severity but they’re the things I try. My friend Jenn recommended essential oils, lavender and peppermint rubbed into the temples. It’s actually helped. Also massaging the space inbetween your thumb and finger on both hands usually helps. It’s an acupressure point. And just drinking more water in general. Just a few thoughts 🙂

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  3. You are NOT wrong. What you experience is what you experience. It is sooo hard to find an expert that understands everything, never mind getting a family member to. 7 years after my son’s diagnosis (Asperger’s) and my mom is still saying “Did you ever get that thing sorted out?” Sigh. As for balance and relaxing have you looked into Tai Chi? It can be modified for sitting if that would be better. It has the same serene calm and muscle building that yoga does without the extreme pretzel poses. (Plus it’s not as trendy so you are likely to get someone who is more genuine teaching it)

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  4. This was a great post! I can relate to the advice giving. Oh boy can I. It took quite a while for family to get on board with the Bipolar and Anxiety diagnosis, now they have a friend that is convinced I have these because I went to Belarus for month and was exposed to radiation. Well, you can’t convince them all, I guess. 🙂 I get migraines myself. I’ve started acupuncture and that seems to be helping along with essential oils. That relaxing bit is just going to take time. Even now, I can’t get my mind to stop running at full plus speed. Good luck! Keep up the blogging. I’m looking forward to reading more.

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  5. I do not do much yoga yet but there is one position especially for anxious people which I think does not require much balance: in involves sitting on your legs bum on heels and bending forward and is called the child

    http://www.yogajournal.com/pose/child-s-pose/

    To this day this is the only yoga pose I am using the other are too complicated for me. Maybe this helps you a little? Am unsure how your balance issues play out in detail I just thought I’d throw it out there.

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