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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SSDI Hearing Update

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Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.

Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).

I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.

Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).

Worries about My SSDI Hearing Tomorrow

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Tomorrow morning is my SSDI hearing. I’m super anxious about it. I feel a little nauseated just thinking about it. I’m afraid I’ll do or say the wrong thing. I’m afraid I’ll burst into tears and feel embarrassed. I’m afraid I’ll somehow misrepresent my reality. I’m afraid the judge will say no and ruin my foreseeable future.

I know the judge probably won’t even give a straight “yes” or “no” answer tomorrow, but that makes it even worse because then I have to wait who-knows-how-long in suspense and worry. I hope I’ll feel better when it is over, but knowing me, I’ll probably spend the next few months picking apart the experience and everything I think I did wrong until I get an answer.

 

I Hate Disappointing People

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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

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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.

Depression Slump

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I’m going through a depression slump right now. I can tell because I am sleeping half the day away and not wanting to get out of bed even when I do finally wake up. I don’t feel like writing, creating art, talking to anyone, or simply functioning. I want to stay in bed and either sleep my life away or curl up under all my heavy blankets and leave reality behind.

I have some important appointments coming up soon (my Ehlers Danlos testing and my SSDI hearing top the list), but right now I don’t even care about those things. I don’t feel like doing them and the thought of dealing with them is overwhelming. I hope this slump passes soon.

I Want My Hot Water Back!

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Our water heater sprung a big leak, so today I’ve been stuck at home waiting for it to get fixed. The hallway carpet was soaked through before we noticed the leak, so trying to dry that up has been a hassle as well. I really hope it doesn’t cause mold to grow where I can’t get to it 😦 That is the last thing my overly sensitive allergies need.

They had to drain the water heater before trying to fix it, so no hot water until it gets fixed and fills up again. It is funny how most days I put off taking a shower until late in the day, but when I can’t take a shower, it is ALL I want to do lol. I feel dirty, grimy, and disgusting, even though I know that is mostly in my head, since I took a bath yesterday.

I had to cancel my therapy appointment for today due to this annoying new development in home ownership, but that is ok, I really wasn’t feeling much like talking today anyhow. I don’t know if it is the stuff going on with the water heater, the rainy, bleak day outside, or just my ever-changing mood, but I’m feeling rather apathetic and blah today.

I want my hot water back!!! Waaahhhhhhh!!!!