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In Pain, Depressed, and Isolated

| marandarussell

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Sorry I haven’t written in a few days. I threw my back/neck out again and it has been bad. Probably the worst it has ever been. I have been constantly downing pain killers and muscle relaxers and still no change. Usually the worst only lasts a day or two during these flareups, but now I’m on day 3 and it still hurts to move in any direction.

Naturally, this has me rather depressed too. I had appointments and fun plans this weekend that I had to cancel due to the pain. I feel like it doesn’t matter how hard I try to be social or how much I try to take good care of myself, my efforts always end up jinxed.

This is why I normally end up isolating myself, because I feel like all my health issues make me unreliable. It feels like no matter how understanding other people are, when I have to call off at the last minute several times, they start to get frustrated (and understandably so).

I just wish this horrible pain would pass.

Complicated Mother’s Day

| marandarussell

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Mother’s Day always creates such a barrage of mixed emotions for me. There was a lot of trauma, abuse, mental illness, and foolish decisions that marked my childhood. My mother was far from a perfect parent. Luckily, she does admit to that and seems to be really trying to be a better person now, but being around her always triggers so many memories, thoughts, and feelings – some good, some bad, some funny, and some tragic.

I think part of the issue is that my brain has a tough time seeing how she acts towards me now and reconciling it with memories of how my sister and I were treated while growing up. I do believe in forgiveness (within reason), and I do love my mother, but I doubt there will ever be a day in her company that doesn’t create confusion for me internally.

I write this post today to recognize those of us who struggle on Mother’s Day to even know how to feel…

When Friends Say Cruel Things It Sticks With You

| marandarussell

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It is strange how negative words can stay with us for a lifetime and hurt long after they are spoken. Today, I was reminded of a conversation I had way back in middle school. My friends and I were having a conversation about birth order statistics and how the oldest is often the smartest and most responsible in the family – which apparently was the case in all their families.

I mentioned how that hadn’t really happened in my family as I was the youngest and yet I was the one in the gifted program, the one who got straight A’s, and the one who was least likely to break the rules. My sister was very smart in her own ways, but not overly academic or intellectual.

One of my friends (or more likely a frenemy) replied, “Well, maybe your sister is the pretty one then.”

Before I could digest this insult or respond, one of my other friends chimed in assuring the group that my sister was no looker either, which made everyone laugh. I didn’t let on that I felt anything, but inside I was crushed. I felt ugly and I also felt bad that my friends had insulted and made fun of my sister.

To this day, remembering this conversation makes me feel ugly, plain, and rejected. I wish my friends had been more careful with their words.

Bad TV Show Depiction of Ehlers Danlos

| marandarussell

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I love the tv show House. This medical drama, based around the character of a doctor with Sherlock Holmes mystery solving abilities is often smart, informational, and amusingly ridiculous. The main character (House) is often a total asshole, but he is so lovably grumpy, enormously flawed, and irresistibly outrageous that I can’t help but like him.

Last night I finally caught their episode that features an Ehlers Danlos patient, an episode I had been looking forward to seeing for a while. Unfortunately, I was really disappointed with the portrayal. First off, very little of the episode actually had anything to do with the woman with Ehlers Danlos. It focused more upon her husband for the first half at least.

When she was finally introduced into the storyline, she was presented as someone with a horrible mental illness (hoarding), which a casual viewer could easily think was due to her forthcoming Ehlers Danlos diagnosis. The last thing those of us with EDS need is to be confused with mental illness conditions even more.

Also, the only symptoms that are even discussed to be related to EDS in the show (and thus lead to the official diagnosis) are the fact that the woman’s heart responded badly to some medication and she had suffered several miscarriages. That was it. Yes, EDS can contribute to miscarriages, but it is far from one of the hallmark symptoms of many EDS sufferers. Nothing was mentioned about hypermobility, chronic pain, dislocations, joint issues, gastrointestinal issues, autoimmune issues, bruising/scarring, loose skin, etc.

Overall, a very disappointing experience as a viewer and EDS patient.

Twittering Tales #126 – This Is It

| marandarussell

The prompt for this week’s Twittering Tales writing challenge immediately brought back sad memories of an ill-fated tour of a great entertainer (one of my all-time personal favorites), so I went with it. Here is the photo prompt and my entry:

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“It was meant to be my swan song. I pulled out all the stops…the moonwalk, the sequins, the white glove, the gangster getup for Smooth Criminal.

It was the only chance my children would ever have to see me live on tour. When I said This Is It, I meant it, but it came too soon…”

(280 characters)

I wanted to add the video and song by the same title as well. It is a beautiful, though sad song and the video features footage of rehearsals for the tour that never was…

 

I Hate Disappointing People

| marandarussell

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You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.

Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.

This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.

I kind of wish I had mentioned some of those things now. Maybe next time.

Even My Dream Self is Depressed

| marandarussell

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I’m still struggling quite a bit. Feeling lethargic, numb, and exhausted all the time. Still not wanting to get out of bed, even though I’m not finding much refuge in sleep either, since my dreams the last couple nights have been overrun by nightmares. Quite an assortment of bad dreams too: A dream about my husband not loving me anymore, a dream about giant ants, a dream about trying to get kicked out of high school. Even in my dreams I’m miserable. During the high school dream the reason I wanted to get kicked out was because I was so depressed I just couldn’t function and wanted to go home and crash.

I’m hoping this depressive episode passes soon. I’m not sure if it is maybe exacerbated by seasonal affective disorder since I haven’t seen the sun in a while, or if this is just a shitty coincidence, but I wish I felt better.