Forgetting to Remember

I’m reading my favorite book series again, as well as listening to the audiobook of another series I read just a few months ago, and watching a TV series that I have  seen numerous times in the past. Not at all the same time of course. I know many that do not read books again, that don’t bother watching the same shows over again. For me though, I must if I want to remember the stories. At least not remembering what happens in these stories means I get to experience the story as if it was the first time.

But books and TV and movies are the only things that I forget. I have missed numerous appointments, forgotten playdates and events. I always forget something important when grocery shopping and even detailed lists don’t always help. It is called “Brain Fog.”  It is a symptom of two of my conditions, Ehlers-Danlos Syndrome (a connective tissue disorder) and Sjogren’s Syndrome (an autoimmune disorder). It causes some memory loss, confusion,  problems with clarity, and that feeling like what you want to say is right behind a door in your brain and you just can’t get it open. I used to be a good writer. It was easy for me and words just flew out without hesitation. But even just this post has taken two days because the words no longer flow. Sometimes, I have to use a thesaurus to try to figure out the right word I want to use.

It helps when people remind me of past events or facts, things that happened, etc., but it doesn’t always make me remember. My spouse has gotten upset numerous times because I forget things that are important to him. In the morning he will tell me something that he needs to do, or ask me to do something for him, and minutes later, I have completely forgot. When I fail, he will tell me that he told me, and I still can’t remember. It seems that I only have clear memories of things that were very significant, and even then, only few specific details, if any.

I look at photos and even with evidence, I still find it very difficult to remember. Lately, I have really been struggling with it, because I don’t want to forget my life. I have considered writing in a journal every day so that I can look back and read about my life, but I forget to write in it.

I wish I could describe how upsetting and scary it is to forget everything, to be unable to bring my thoughts to words, to not be able to explain to my husband or to my kids why I can’t remember details, conversations, or even what day of the week it is.

Sorry, for rambling on about this, but I needed to get it out.

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Suffering in Silence; I will be your friend.

It seems so cliché. The concept of suffering in silence. But to the chronically ill, sometimes the only way to get through the day is to do it quietly. People get tired of hearing, “I’m tired,” and “I’m sore.” Because these generalized statements sound like nothing but lame complaints over and over. Why bother telling someone that you are hurting if they really don’t care, or if they really don’t understand the depth of the hurting? Even in the attempt of trying to explain the pain and the fatigue, we sound whiney or exaggerating. I may be the first to tell you that the chronically ill don’t exaggerate. They don’t have to. The chronically ill have been in pain for so long that it takes significant pain even to admit that something hurts.

My entire life has been pain. Migraines, knee pains, back pain, wrist pain, finger pain, even throat pain. But when you are in constant pain, every day pain becomes your zero on the pain scale. Because to you, that pain must be what everyone feels. It must not count. One day someone finally tells you that pain is important. That pain that you haven’t mentioned all these years for fear of looking whiney or weak, it is significant. You really aren’t supposed to be in constant pain. That moment when it sinks in; When you finally understand the reason for the pain, for the exhaustion, for the struggles: Relief. Finally, you don’t feel so crazy. You don’t feel like you need to hide and suppress every feeling. I began to talk more about my pain to those closest to me, but still they don’t understand and I am back to silence. Because now they think that I make it up since being diagnosed. That I go to the list of possible symptoms and just list them off for fun, or out of laziness, or out of craziness.

Even with doctors telling me there are things in my body that are broken, that don’t work properly or that are more damaged than should be at my age, I find it very hard to get those that are not chronically ill to understand. So I stay silent. To friends. To my children. To my spouse. Online support groups and my beautiful sisters, also chronically ill are my only places I don’t feel alone. On especially hard days, I look for someone to understand. How sad is it that those closest to me can’t understand, and in some cases, won’t even try.

You have a friend out there. Even if you are like me with little help or understanding around you. You have me. I will be your friend.

E&O

Ignorance is the Disability: A video by Caylee Shea –The Pain is Real.

This woman is chronically ill, like me. This video reveals some of the awful things that people say or do to people that are ill, especially when they are very young or not visibly sick. The judgements we go through every day, the reminders that we aren’t ‘normal’ for our age; that we can’t do what everyone else can; that we are broken; they eat away at the courage and strength we do have. Don’t forget that everyone is going through something. It may be obvious, or it may be a deep dark secret, invisible to others. We must treat others with respect and dignity, and think about how you would feel if you were in that situation.

I have several chronic illnesses, and like her, they have intensified in the last year or so.  Unlike hers, mine was not due to the Gardisil vaccine, but that doesn’t make it any more or less important or severe. We can’t compare our pain with others, because pain is relative to the person’s own experiences. We can only try to help when we can, and find comfort knowing that others can understand our worries.

I will share with you my struggles, with my illnesses, with my family, with my goals. Thank you for reading. I will see you soon.

E&O

Welcome.

Over the last year, I have been diagnosed with a dozen illnesses, most of them chronic, some I have had for years undiagnosed, some recent as a result of the others. My illnesses, while still somewhat new and only moderately severe, have caused a whole rollercoaster of events and changes in my life.

As this is my initial post, I will just start with background information. Though I prefer to keep this anonymous for now, I will tell you a little bit about myself to better understand my future posts.

I am in my late 20s. I am a wife, a mother, a sister, a veteran, a friend, a dreamer. I grew up in a middle class home, divorced and remarried parents and a happy life. At 21, I joined the military. While in the military, I was nearly constantly in the clinic with joint pain, coughing, migraines, stomach pain, etc. Each was treated separately with very little results. After having my children, I left the military. A year later I was diagnosed with Ehlers-Danlos Syndrome (EDS). It is a connective tissue disorder that affects pretty much every system in the body in some way. Generally, hyperextension of the joints, joint pain, stretchy skin, stomach issues, aortic dilation, velvety skin, odd scarring, and more. Symptoms very greatly from person to person. One person may be highly functioning and in little pain, while the next is in a wheelchair and swallowing down pain pills.
My EDS is fairly mild (in my non-professional opinion). However, due to this diagnosis, I have also been diagnosed with the following within the last year during routing testing from EDS diagnosis: High Blood Pressure, Obstructive Sleep Apnea, Sjogren’s Syndrome, Polyneuropathy, Herniated discs, Irritable Bowel Syndrome, Dry skin, Dry/Damaged Eyes, Chronic Fatigue Syndrome, and more minor things. Additionally, we were made aware of my child’s severe condition and were able to get him the surgery he needed.

How do I keep going? Endurance and Optimism.

Stay tuned as I reveal more.

E&O