Isolation and Loss from Chronic Illness

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I’ve been feeling rather sad and isolated the last few days. I think a lot of it comes from the stress of dealing with chronic illness and chronic pain. Anyone who has chronic illness is probably familiar with spoon theory, an illustrative way to describe why you have to choose carefully how to use your energy to do things when you have very limited physical ability.

In other words, sometimes you have to choose whether you would like to go out and socialize for a short period of time, spend that energy getting some much-needed housework done, work on a hobby or personal interest, or even simply take a shower…because you just don’t have the energy and the physical ability to do them all within the same day like a healthy person could.

Most of the time I end up choosing to spend my “energy” and limited abilities to either spend time with my husband, work on my art/writing/blogging, or take care of personal hygiene or light housework. Prioritizing these things leaves no extra energy or time to socialize on a wider scale or do much outside of the house, other than maybe occasionally going out for dinner or doing a little necessary shopping. Even the thought of going to a movie is often too exhausting to contemplate.

All of this makes me sad, especially when I remember how I used to enjoy so many other things I can’t do any longer. I used to love hiking, playing tennis, roller skating, bowling, dancing, working, swimming, being a foster parent, and going out to various activities with people I know or share interests with. I’ve pretty much lost all of that for good. And that is depressing.

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Twittering Tales #125 – Empty Bed

Here is the photo prompt and my entry for this week’s Twittering Tales writing challenge hosted by Kat Myrman:

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Olivia sat on the edge of her daughter’s unmade bed. She ran her fingers over the ridges and bulges of the white blankets. She leaned down to sniff the fluffy pillow at the head of the bed, then laid her head down on it heavily.

She’s really gone. The pain hit hard and fast.

(275 characters)

(Note: The photo prompt this week really reminded me of the novel I am currently reading, “The Night Olivia Fell”, by Christina McDonald. So, I stole the character name for the writing exercise.)

Christmas and Family Forgiveness

Yesterday my husband and I traveled over to Indiana to meet my mom and her husband for Christmas dinner. We all decided to meet at a truckstop that is about halfway between us, so that neither of us would have to cook, clean up, or drive too far:

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I genuinely had a good time and am glad I’ve been able to spend more time with them recently. Those of you who have followed my blog for a while, may remember that there has been a lot of water under the bridge between my mother and myself over things that happened when I was growing up. She made some huge mistakes, and as is often the case, my sister and I had to pay for many of those choices just as much as she did…maybe more in some cases.

She genuinely seems to be regretful and is trying to make things better between us, so although I am always going to be cautious and protective of myself, it feels good to be able to embrace forgiveness for my own peace of mind and well-being. Forgiveness doesn’t mean that what we went through was ok, or that the damage wasn’t done, but it does mean that it doesn’t have control of my life, my mind, or my heart anymore. I can move on.

I am somewhat a believer in the saying “When we know better, we do better”. Some of us take a long, long time to “know better”, but healing and wisdom are ours once we finally do face the truth.

 

Feeling Low After Lawyer Visit

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Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.

The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.

The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.

I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.

YA Book Review: “Without Tess” by Marcella Pixley

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“Without Tess”, written by Marcella Pixley, is one of the best YA novels I have read in a while. I rarely give books five stars when rating them, but this one I did. The story revolves around the main character (Lizzie), and her dead sister (Tess). Lizzie is the younger sister by a couple years and was only 10 when her older sister tragically passed away.

The real star of the novel is Tess. As you read through the book and relive vibrant memories Lizzie shared with Tess, you come to both love and sometimes dislike Tess. Tess was a true believer in magic. She was creative and passionate. She was both loving and loyal, but at times cruel and violent. She was mentally ill, and at times downright psychotic. This novel is a lifelike retelling of what it is like to grow up with an extremely mentally ill sibling. It addresses the love, the hate, the sadness, the pain, the rage, the guilt, and all the other emotions that come along with such a disturbing family dynamic.

I had a deeply personal connection with this book, both as someone who grew up with a mentally ill sibling, and someone who eventually lost that sibling, mostly due to that mental illness. At one point the book even made me tear up, which is extremely rare for any book to do. Definitely recommended!

Dream Analysis: Fear of Death

 

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My Spyder

Last night I had an interesting dream. In the dream, there was a big snake loose in our house and I was trying to stay as far away from it as I could because I feared getting bit. Every time I would see it somewhere, I would run to another room. Then, the dream took an unexpected turn when the snake attacked my cat, Spyder. Spyder has been my baby since the day he came home to us and has been with us almost 12 years.

When I realized the snake was attacking Spyder in the dream, I was suddenly like “HELL NO!!!” and I ran into the room with a small sword (that suddenly appeared out of nowhere) and I cut that snake’s head clean off! I was suddenly as brave as an Amazon warrior, or like a mother bear defending her cubs.

When I woke up today, I was trying to decode this dream a bit, and I think what I was actually dreaming about was the fear of death. Just last night I was talking to someone about the short spans our pets live and about how my last two cats died around the same age Spyder is now. I think the snake symbolized death coming to take a loved one from me, and while I clearly have a self-preservation instinct and a healthy fear of my own death, that fear pales in comparison to the terror I feel at losing a loved one.

I Have Autism, and I Yearn to Feel I Belong

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This may be a post that is hard for neurotypicals to relate to – I’m honestly not sure. But, as someone who has high-functioning autism (Aspergers), I find that I have always had a deep internal yearning for something that I don’t know how to get or how to keep – and that is a true sense of belonging. I have had fleeting moments of feeling like I belong in a group. Lunches with friends at school, days at work where I laughed along with the others and felt like part of the gang, or even last year, when I was hospitalized and briefly came to feel at home among the other patients.

But none of these lasted. The very next day, or even the next hour, I could easily be feeling like an outsider again, like someone with their nose pressed to the window, watching the motion and activity inside with longing. Even among friends, it was often clear that I was “the weird one”, the one that was sometimes liked, but never completely understood. I often felt like I was an alien being in a foreign world, and sometimes I still feel that way.

Now, since I don’t have to attend work or school outside of my home, I am not forced into regular contact with others and the chances of feeling a part of a group are even less likely to occur. I can go out and seek groups, and sometimes do, but I never really end up feeling a part of them. I am not a cog in the gears of a greater machine, I am a spare part left on the table.

The best way I know to describe the yearning inside is to share the first few lines from the theme song to the old tv show, Cheers:

Sometimes you want to go
Where everybody knows your name
And they’re always glad you came
You want to be where you can see
The troubles are all the same
You want to be where where everybody knows your name

That is what I want, but realistically, I could hang out at a bar EVERY SINGLE DAY and I’d be lucky if anyone learned my name…and I can’t help but feel that is my own fault. I’ve seen others who can walk into a place and in a few minutes, they are no longer a stranger to anyone. It is almost like a magical ability, and is clearly one I’ll never have.

Journal Writings from a Severe Depressive Episode

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Once in a while I share intimate writings from my journal, from times when I was severely depressed. I don’t do this to get sympathy, but because I hope to educate people who haven’t experienced depression themselves to get even a glimpse of the mental torture you undergo when extremely depressed. I hope sharing might help reduce the stigma and the judgmental attitudes that persist in the face of major depression. So, here goes:

“Why is it that I am screaming on the inside, and yet my voice is mute? Not a peep must pass these lips. I am invisible, even as I am seen.”

“I had to get out. I had to leave. Repeating “I’m ok”, over and over to myself, wasn’t working. I couldn’t breathe, or maybe I didn’t want to any longer. My entire body shook, even as I threw on clothes and grabbed the car keys. I’m still shaking now.”

“I’ve lost it. My composure, my hope, my perception of living. I no longer know if I even exist. No one else seems to see me either.”

“As I walk down the road, tears streaming down my face, a ribbon dangles from my journal, suspended not by wind but by movement. I should tuck it in, but I want to look unkempt. Let the outside, even my props, match the inner disarray.”

“The question asks itself, am I sad or just spoiled? Do I put this on? Is it a show? Do I want to appear unhinged? Is this for attention, and if so, why do I fail so miserably even at that, as it is made clear that nobody sees me?”

*You might notice a pattern in many of these writings, a feeling of invisibility, of not being seen, and not feeling like I matter. As the last quote shows, I even wonder if I am crying out for the attention that I don’t know how to get. Perhaps this aspect is tied to the social limitations of being autistic and suffering from severe social anxiety disorder? I wondered if others who are not autistic or socially anxious feel these same things when depressed, or if it is just me?

By the way, BetterHelp has some great resources on depression as well, so check them out!