The Effects of Impaired Cognitive Function

 

Impaired cognitive function – commonly referred to as brain fog – is a common symptom of dysautonomia. Although the brain fog doesn’t cause the same kind of physical pain and discomfort as other symptoms, it is often a large source of frustration. It can contribute to some patient’s inability to work, and make simple everyday tasks much harder.

 

 

 

I am someone who enjoys intellectual challenges and critical thinking exercises. I have always enjoyed stretching my mind and pushing my brain to think differently. I was a good student, and am often referred to as “smart.” But for me, nothing makes me feel dumber than when someone calls me smart.

 

I get so frustrated with my brain fog. I think, “if I am supposed to so smart, how come I can’t remember words that are a part of my most basic vocabulary?” My impaired cognitive function makes it hard to think, remember and often, speak. Sometimes I stutter; sometimes I stop in a middle of a sentence, having no idea that I did; sometimes reading is a struggle; and much of the time, my memory is quite poor.

 

Brain fog, and the fear of brain fog, have become some of most hated symptoms. As a writer, when I sit down to write and look at a blank page, I become overwhelmed. What am I trying to write? What did I want to say? I couldn’t string together a sentence this morning, how am I supposed to write a whole article now? Writer’s block is every writer’s worst fear; but mine is brain fog. Writer’s block is annoying, but brain fog is paralyzing.

 

 

 

But I am still writing. I don’t give into my brain fog. I keep fighting the battle for control of my cognitive function; sometimes I win, and sometimes I lose. The important thing is that I keep trying, and moving forward. My disease is degenerative, and may I get worse over time; but if I give up now, I lose immediately.

 

If you are facing a disease, or a particular symptom that keeps trying to claim dominance over your life, you must fight back. Something I had to learn, is that doesn’t mean powering through to the extent that you over-do it and end up making things worse for yourself. It means not letting your disease own you. It means “rolling with the punches.” Write when you are able to write; rest when you need to rest. But don’t let it define you – or redefine you.

 

 

 

I’m still smart; I just have a harder time showcasing it. I’m still smart; I just don’t always feel that way. I’m still smart; I just have to remember that a little bit of impaired cognitive function doesn’t change that.

 

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The Perfect Balance

When you have a rare, invisible disease that is hard for people to see or understand, it is easy to begin feeling isolated. Even if you are fortunate enough to have a strong support system, and get out of the house on a regular basis, you’re still likely to end up feeling alone. It’s not because your friends and family aren’t trying or don’t want to help, it’s simply because they are different.

You can go to a foreign land and enjoy another culture, and you can really hit it off and care for the people you meet. They might even become your best friends. But they likely won’t be able to totally comprehend what struggles you go through in your own country or culture. Not because they don’t want to, but because they haven’t experienced it.

The chronic illness culture is different than the culture our friends and family live in. They can still be your biggest source of love and support, and they can even be understanding of what you’re going through – but they won’t know what it’s like. That’s okay. And try not to make them feel like it’s not, because it is.

 

It is totally okay that your family doesn’t know what it’s like to be in the pain that we are in; because if they did, that means they would have had to experience it. I wouldn’t wish my physical problems on my worst enemy, yet alone a loved one. But that doesn’t stop us from feeling isolated.

It is important to talk to people who understand – who fully comprehend what the invisible illness and chronic pain lifestyle is like. It is important for us to know that we are not the only person who lives likes this. It is important to know that we are not alone.

If you are not involved in some sort of support group or do not have an outlet that makes you feel a part of the “Spoonie Community,” I suggest you find one. Realizing that we are not alone and that their others out there that share our struggle can be really cathartic.  However, this comes with a warning: do not let yourself become so involved that all you do is read blogs about your disease, talk about your disease, and obsess about your disease. Becoming obsessed over your poor health is not constructive and can hinder your mindset about treatments.

 

Sometimes, the healthiest thing we can do as Spoonies, is to take our minds off ourselves and our problems and help others. It helps to divert our attention for a little while and remind us that the world is still going around, and has not stopped because of our problems.

You have to work to find the perfect balance between caring for yourself, and not being all about you. The perfect balance will make sure you listen to your own body, but that your body doesn’t make all the demands. The perfect balance will help make a happier you.

T-VAM Information

I wanted to raise awareness for those of you suffering from Dysautonomia about a procedure I had almost a year ago. I wrote about it briefly in my first post, but wanted to give possible candidates more information about it. It is called Trans-Vascular Autonomic Modulation (or, T-VAM.) Right now, the only doctor doing this procedure is Dr. Arata at Autonomic Specialists in California.

 

This procedure has helped a lot of patients to varying degrees. It hasn’t helped me in any noticeable or substantial way – but it has helped some people. It is a lot of money to spend, especially knowing that it may not help you. I do, however, think it is still worth looking into and seeing if it could be right for you. You’ll never know unless you try.

 

Here is a link to the website: https://autonomicspecialists.com/tvam-transvascular-autonomic-modulation/ I suggest you do your own research and decide if it is something you want to try.

Chronic Truth, Invisible Pain & Quiet Strength

             The tagline to this blog, and the title of this post – “The Chronic Truth, Invisible Pain & Quiet Strength” – explains everything you need to know about Dysautonomia, and other invisible diseases. It is a simple way of sharing a complicated story about a really complex lifestyle.

 

It’s a humbling thing – admitting that there’s something in you that is broken, disabling the most basic functions of your own body – and I have always been too proud. The funny thing is, there’s nothing I can really do to protect my pride, because whether I verbalize it or not, it’s still there; it’s still restraining me and keeping me from the active lifestyle I would like to live. It’s the chronic truth.

Chronic, as described by Merriam-Webster means marked by long duration or frequent recurrence” or “always present or encountered,” or, my favorite, “being habitually so.”  There’s a lot of truths that I like to deny about my life with Dysautonomia. I like to deny that I can’t run around like I use to, that I cannot work as hard or as long as I use to, that I can’t think as clearly as I use to, that I have a lower quality of life, that I struggled to rebuild my identity every time I got worse and had to adjust my life to fit my disease, that waking up every morning is an uphill battle, that it hurts an immeasurable amount just to wear a pair of jeans; but deny it as I may, the chronic – the always present and habitually so – truth of the matter is, that it’s still there.

 

            The invisible pain portion of the tagline is somewhat self-explanatory, in that, Dysautonomia is what they call an “invisible disease.” I have no scars or visible wounds, but the pain is still unrelenting. There is, however, another meaning.

The tricky thing about chronic pain diseases is that they take over your life. In many cases, a disease like Dysautonomia appears in the onset of puberty, though sometimes it is much later. Because it does come on in a whirlwind, your life changes drastically and sometimes instantaneously. It is hard to cope with the loss of self you experience during this time. Many will experience this more than once, as you are always adjusting your life to what you are able to manage physically as your disease progresses.

According to my old friend, Merriam-Webster, the definition of invisible is “incapable by nature of being seen.” That’s obvious. We all understand that. However, if you keep reading, you’ll see the definition listed under 3b; “not reflected in statistics.” I like this definition for my description because in the “statistics” of invisible diseases, the amount of patients that report a loss of self or a sense of depression are not reflected. Recorded or not, however, the pain and struggle of losing yourself is very real.

 

Now, I am sure you do not need me to tell you how Merriam-Webster defines the word “quiet.” So, I’m going to tell you how the Oxford Dictionary defines it, instead! (You love me, right?!) The Oxford Dictionary defines quiet in this way: “Carried out discreetly, secretly, or with moderation.” Living with an invisible disease means that most of your strength is also invisible. If you can’t see when I’m hurting, you also can’t see when I’m fighting it. The strength of Dysautonomia, Fibromyalgia, and MS patients is mostly carried out discreetly. That doesn’t mean we don’t say “ow,” or cry or ever show our pain, it just means you can’t always recognize when we’re being the strongest. That is quiet strength.

Welcome… back…

 Just about one year ago, I started a blog under this name to raise awareness for Dysautonomia. I was really passionate about it at the time, because I was also using it as a tool to raise money for me to have procedure done that was – in my mind – suppose to “fix” me. It didn’t.  The procedure didn’t make me feel better, and I wasn’t in the mood to write about it. So I deleted the blog.

 

Not being fixed by the only solution out there right now was highly discouraging. I never really talked about it or expressed how it made me feel. I just powered through, living life and avoiding the topic. Truthfully, it was heartbreaking. It is heartbreaking. I feel utterly broken and now I know, I’m completely unfixable.

But that’s not the worst thing I was feeling. Feeling unfixable is hard, but it’s not new. I felt really guilty. The procedure costs a lot of money and we had to do a lot of fundraising. We got incredibly generous donations from family members, friends, co-workers, and strangers. It’s really hard to ask for money. It’s even harder to live with the guilt after realizing all that money was wasted.

I have been swimming in guilt for months. I’ve definitely been getting worse, and with every downturn in health, I fell deeper into shame. It took a lot of conversation for it to be made clear to me that I shouldn’t feel guilty, and that those who gave knew the chances of it not working out. They gave because they knew what I knew – I couldn’t not try it.

 

 

I couldn’t write the blog anymore, because it’s hard for me to be this vulnerable. It’s hard to be transparent about the pain I try to hide. But I’ve always wanted to help people, and my husband convinced me that this blog just might be a way to reach someone. So I’ve rebooted it.

I hope you enjoy it, and I hope you find it helpful.