On A Personal Note

On A Personal Note | Dealing with Disabilities and Illness

I try not to keep it a secret that I have disabilities and a physical illness which often affects me negatively. I don’t want to act like these things are shameful or keep me from my dreams. But they do affect my life in major ways, and usually not positive ones.

I have severe ADD/ADHD and an illness called Postural Othostatic Tachycardia Syndrome, or POTS for short, as well as peripheral neuropathy, which works in tandem with my POTS. Most people know what ADD/ADHD does. For me it seriously inhibits my concentration and focus making it hard to get stuff done. You probably don’t know what POTS or peripheral neuropathy are, though, and I’ll spare you the nitty gritty. What POTS does though is cause extreme weakness and fatigue, as well as diziness when I stand. And the peripheral neuropathy causes my feet to burn like I’ve just walked ten thousand miles in a desert.

All of this together makes life pretty hard sometimes. It’s hard to wake up and want to get out of bed and get work done when you feel completely unrested and your feet hurt. This is why two adjunct symptoms of POTS are depression and anxiety. Of which I now have both.

People with illnesses or disabilities often try to smile it off. “Yeah, I’m limited, but I try to focus on what I do have, what I can do,” they say. What they don’t tell you is it’s damn hard. At least when you first are diagnosed. It’s hard to feel like everything you’ve ever wanted is slipping away from you all because your body failed you when put to the test. And that’s not your fault, but it feels like it is.

I know I don’t have it hard, but that doesn’t mean it isn’t hard. My life will never be the same and some days it feels like some part of me is gone forever. I know that’s probably the depression talking.

I’m not trying to make this a pity party and be all, “Boohoo, Lila.” It’s just, I need a place to put my feelings and someone to listen and not be all, “Look on the bright side!” but just be like, “I understand, that’s rough.” And here feels like the right place to do it.

I’m sorry if you don’t want to hear this, but I can’t always be cheerful. That’s not what these “On A Personal Note” thingies are about. They’re about honesty and this is how I honestly feel at the moment.

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11 thoughts on “On A Personal Note | Dealing with Disabilities and Illness”

  1. Illness and disabilities are horribly hard to talk about, and I’m unbelievably wowed by your bravery to put it all on the table. No one ever wants to talk about how *hard* these things are. They always want to hear the brave, happy stories of how despite the limitations they power through it and smile everyday. And, really, those are wonderful and empowering stories, but that doesn’t make the day to day seem any easier. It’s hard to smile and be cheery when you feel like you can’t get up from your bed.

    I do want you to look to the bright side and be positive, because that’s the only way anything will feel like it’s getting better. But I *understand* it’s awfully hard and that some days are worse than others and sometimes you feel entirely like you’re choking on how difficult everything is.
    I hope you can always feel like you have this place to talk out your feelings without fearing judgment or sugar coatings!

    <3<3

    Liked by 1 person

    1. oh my goodness! thank you so much for your kind words! they mean more to me than you can imagine! it’s hard to talk about, but i want other people like me to know they’re not alone!

      Liked by 1 person

      1. Oh goodness, no, Thank *you* for such a wonderful post! I’m bipolar depressive and it means so much that there’s someone else that understands the high days don’t make the low days any easier. I can’t imagine how much harder your bad days must be, but I do understand they’re horrifically difficult to deal with in the moment.

        Liked by 1 person

  2. You can talk about this as much as you like as this is your blog! I think people are just encouraged to say everything is okay especially in the UK where it”s like your business is your business and you shouldn’t try to push it on anyone else. We should be encouraging such chatter, we are only human and it’s logical to think people might want to talk.

    Liked by 1 person

  3. That is hard. And on a level, I understand. I deal with anxiety and depression as well, and even without a physical disability they can be so debilitating.

    Sometimes it can be easier to say, “oh I’m fine” instead of admitting that it hurts.

    I don’t remember where I was going with this, but you aren’t alone in feeling this way, and I know there are many of us willing to lend an ear whenever you need.

    Liked by 2 people

    1. thank you so much, julia! that means a lot. i think iit’s easy to just say “i’m fine” in a contradictory culture like that in the US where, it’s encouraged to “speak up” if you don’t “feel okay” but then you’re made to feel kind of ashamed. but i’m so touched by everyone’s outpouring of kindness and that they want this to stop.

      Liked by 1 person

  4. as a person dealing with illness myself, i can tell you that many people don’t understand how difficult it can be, and you are totally right about how there may be people that have it harder than us, but that doesn’t mean we aren’t struggling. for some reason people like to remind us others are having way more trouble, but i think each one should care about him/her self instead dismissing others’ problems. I hope you are okay and as positive as possible, i send you my best wishes.

    Liked by 1 person

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