Holidays and Unseen Illness

So I just found The Mighty the other day. How I missed it, I simply have no idea. But it’s brilliant.

They have a blog prompt that is a Holiday Wish List for those who are dealing with or related to someone who is dealing with a condition.

I don’t know if I’ve ever discussed that I was diagnosed with Meniere’s Disease – in the midst of the divorce (and no – it’s not gotten better) and it’s meant some major life changes. Yes – I have measurable and permanent hearing loss. Yes – I get intense episodes of dizziness that vertigo doesn’t start to cover – it’s full-on equilibrium failure. But mostly I have friends and family who simply can’t recall that I have dietary restrictions, and think that because they can’t see it, it’s all in my head.

With that in mind – here is my Holiday Wish List for people with Meniere’s and all other ‘unseen’ illnesses. And it won’t cost you a dime!!

  1. We wish that friends and family would understand when  we have to cancel at the last minute. I promise I don’t use my disease as an excuse – but unless you’d like vomiting and my head glued to your (hopefully) bathroom floor for several hours – you’ll have to trust that I know my limitations, and am only bowing out because it’s worse for you. Trust that I’d rather be there than dealing with this.
  2. We wish people would stop giving us a hard time about our conditions. I know we use humor as a coping mechanism, and understanding an unseen disease is difficult – but please try. It’s *not* funny when someone with Narcolepsy nods off. It’s *not* funny when someone with Meniere’s wobbles when standing or can’t hear you on one side of their head, or when someone with high-functioning anxiety suddenly feels as though they can’t breathe for no reason in the canned foods section of the store. Yes- we know it looks and seems ridiculous. Yes – we can take a joke. Yes – we can occasionally pick on ourselves for these aspects of our diagnosis or laugh with you. But when it’s constant – it gets old. As much as you may be tired of seeing/hearing about/dealing with the result of our condition, we’re 10,000 times more tired of experiencing it.
  3. We wish people would PLEASE take our diseases seriously. Don’t ask “How’s the ear thing?” or “Still dealing with that panic stuff?” Belittling it doesn’t make it any less real. We’ve all been guilty of this – girlfriends dealing with PMDD or difficulty conceiving, high-functioning anxiety and depression, the list goes on and on – if you haven’t experienced it, and can’t see it – it’s easier to blow it off than to realize that it has very real and daily impact on our lives. We’re usually trying our best not to let it bleed over to you – just because we’re doing a damn fine job of coping (thank you very much) doesn’t mean it’s easy.
  4. We wish for graciousness. In general, as a human, figure it out. It’s not that hard. In specific, don’t get pissy when I politely decline your food or ask what it’s marinated in – (unless you’d like me to ruin your newly redecorated powder room – see above). No – I can’t and won’t drink your cocktail. Yes , alcohol content matters, sodium content matters. So does sleep. Further – IT SUCKS. I want to drink that cocktail – oh so very much! I want to eat that gorgeous hunk of salami. But the price is simply too high. And don’t get all crappy – I’m not asking you to provide me with a special meal. I’ll eat what I can, and have faith, I almost always have a snack handy that I can munch on so we all have a lovely time!
  5. We wish for Love. If you love me, love me as I am right this moment. This might get better or easier. It might not. I have to shoulder this load, I wasn’t given a choice – no one said, “Hey Sara – would you rather have Meniere’s or break your right arm twice?” You absolutely don’t have to walk this road with me. But if you choose to, do it with kindness and love. I don’t just need a kick in the ass to get over it. I don’t need your tough love. It doesn’t work here. Just love me, care for me, cherish me, and I promise to do the same in return.
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2 thoughts on “Holidays and Unseen Illness

  1. have you seen a lessening of the Meniere’s symptoms since the removal of the Mirena? I have had Mirena for about 8 years and following the insertion of my second one, I started to develop the symptoms of Meniere’s. I was finally diagnosed with Meniere’s in July 2016 and have done the low sodium diet, several rounds of oral Prednisone and even injections of Prednisone into my ear. The injections helped for a few months but then my symptoms returned in December 2016. I have done everything from chiropractic adjustments, to acupuncture, to supplement regimes and even tried essential oils. Nothing has helped my symptoms. After doing some research on-line I have come across many people who experience Meniere’s like symptoms and have the Mirena. I am having my Mirena removed tomorrow and am so curious as to whether or not you feel you have had reduction in symptoms since the removal of the Mirena. Thanks!

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    1. Oh Michelle! I am so glad that this is useful at all for anyone. And SO incredibly sorry that anyone else even needs this info.

      So – and I really should update the Mirena post – removing the Mirena changed my life completely.

      Regarding the symptoms I still have – I occasionally still have the tinnitus. That comes and goes – though sometimes it’s almost completely gone – which is massive. I have had 1 episode of the ‘fullness’ when I had a cold -but that is it. The fullness feeling is mostly always gone.

      I have NOT had another major loss of balance episode since removal. I cannot say that I’ve even been ‘dizzy’ more than a couple of times (other than the predictable motion sickness in the car). Definitely not had that ‘head glued to the floor’ feeling.

      I can tell that I’m still sensitive to too much sodium or alcohol (especially the alcohol.) But I can truly feel it coming when I’m a little ‘off’. It’s nothing like that feeling of just being side-swiped and having your balance taken away. I’ll get that slight dizzy feeling and know I need to drink a lot of water and have a sit down.

      So I’ve kept the lower sodium diet. Unfortunately, I have *not* regained the hearing loss. Though I think I always knew that was going to be the case.

      I’ve learned that keeping my blood sugar constant helps a ton as well.

      Now – the symptoms I DON’T have anymore – No more week of light bleeding every period (I never lost mine) – I was back to my normal cycle almost immediately. NO MORE crazy. Seriously. I have my usual PMS cranky, but that’s it. I have not just dropped all the weight that I gained, though with some work it’s starting to drop – at least it will drop – hard workouts and starving myself wouldn’t shift it before.

      So – loooooong answer – I’m sorry – I can’t say that all of my symptoms are gone. I wish I could. But I can say that my quality of life is improved by several orders of magnitude.

      I’ve recently read some things about TMJ and Meniere’s and that’s something you should go dig on as well – some of the jaw exercises I found have been great.

      Please stay in touch and let me know how you do – good luck with the removal!

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