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My Hidden Life: Stories of Illness & Disability

@chronicallypainful / chronicallypainful.tumblr.com

I'm a graduate student (in math) with chronic pain from Central Sensitization Syndrome (which is closely related to fibromyalgia). This blog is a mix of my personal experiences with illness and treatment, rants on being sick in a prejudiced world, practical tips, and scientific information on my disease and related conditions.
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Any shower chain recommendations?

Does anyone have recommendations for a good shower chair / shower stool?

I’m moving in about a month for my new job, and my new apartment isn’t ADA accessible.  That’s fine, as the only feature of my current ADA accessible apartment that I actually use is the built-in shower chair. (And the electric door opener, but that’s only necessary because the door is super heavy.)   But, that does mean I need to buy a shower chair before I move.

Ideally, I’d like something easy to clean (but I don’t know if that exists!).  I don’t need a back; just a bench or stool works for me.  And of course I don’t want anything that has to be installed; it needs to just sit in the shower.

If you have recommendations, I’d really appreciate them!  Thanks!

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I have a job!

I just accepted a job for post-graduation.  I start in August. 

I’m not going to share details, because I deliberately don’t use my real name here.  

But, it’s a good, professional job using my math skills.  

I’ll have a salary and good benefits that should make it way easier to take care of myself.  And I’ve already talked to HR about disability accommodations, and I think part should be good, too.

I’ll be moving, which is of course stressful.  But I’ll only be a few hours away from my brother, and about 4 hours from my parents. And I already know a couple people at the company.

Now I just have to graduate. :-)

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[Image description: Hand lettered text “We are enough, just as we are.” with stick figures using various mobility aids.]

Some more art I’ve been working on. :-)

PS. If you want it in a different color, I can do that easily.  I’ve been learning how to digitize hand drawn work, and it’s pretty cool.

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[Image Description: Model wear a t-shirt.  The shirt says “Proud disabled Yogi.” There is a stick figure lying on a yoga mat with a cane next to the stick figure.]

I created this design for me, honestly.  

Yoga is great for me, but I sometimes feel excluded because of my disability.

I also learned how to digitize my art as vector graphics, so this is much higher-quality than the art I’ve posted to Zazzle in the past.  Which was fun to learn.  I’ll be making more....

As I’ve said before, I post these designs because people sometimes request to buy them.  That’s awesome that you guys like my work so much!  But I’m okay financially, so no pressure from me to buy anything!

Source: zazzle.com
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So frustrated with my professor.

I really struggle to write. It’s quite painful, and I have to limit how much writing I do in order to avoid making my pain (temporarily) worse. There are consequences if I overdo it.

Now, this professor, he seems to worship the idea of writing out computations longhand. He assigned us problems that he intended for us to solve by repeatedly applying inequalities and simplifying the algebra, in some cases requiring more than a page of computations per problem. I consulted the literature, found a source that discussed some alternate approaches, and solved one of the problems using those techniques. When discussing my solution with this professor during office hours today, he told me that that wasn’t the solution he intended. He showed me his intended solution, and then started talking about how great this subject was because he could prove all sorts of results using just a couple of key inequalities and a bunch of algebra. He talked for a couple of minutes about how he found that fact comforting, and isn’t it great?

I sat there trying not to scream at him. He knows I have a disability. He knows I struggle with handwriting. We have talked about it. Multiple times. I was wearing a wrist brace. While he was extolling the virtues of hand computation.

I did eventually point out that, no, it’s not great, because I can’t do that. I can’t just bash at the algebra until I get the inequality I want. No, that’s not an option for me.

And what does he say? “Oops.” That’s it. No apology. Just “oops.”

Needless to say, I got out of his office as soon as I could manage.

This sort of thing hurts. It hurts because I do want to be able to write out all the math. It hurts because the sort of obliviousness he showed is one of the reasons why we don’t have good assistive technology for doing mathematics. It hurts because I still sometimes struggle with believing that I can be a successful mathematician without handwriting.

To be completely fair, mainly he was just oblivious, not malicious. But it’s been a long week, and I just really didn’t have the patience to deal with his behavior today.

So, this prof just got a teaching award......

I am so ready to graduate and get out of this school.

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The truth about why I haven't been around much lately

Okay, there are multiple parts of this truth. I'm getting close to graduating with my PhD, and that is just a lot of work. And I'm trying to search for a job. And all while dealing with chronic pain and the miscellaneous collection of other symptoms I live with every day.

But those are all just reasons that I'm busy. The reason I haven't chosen to spend my (granted, limited) free time on tumblr is this: I really like and benefit from yoga.

Now, let's be clear, yoga has not and will not cure me. I am still disabled; I am still in pain.

Let's also be clear that a lot of yoga teaching and discussion in culture is ableist.

And let's also be clear that I don't like being asked "have you tried yoga?" any more than anyone else does.

(Though, I now do have a scripted answer: "As a matter of fact, I practice yoga every day. And you should be grateful that I practice, because that yoga practice is currently giving me the calm and self-control to not smack you with my cane.")

And let me be superduper clear that yoga is not the right practice for everyone, and that there are lots of different styles of yoga and that what works/doesn't work for one person is going to be unique to that person.

To be honest, I'm a little scared to post this. I don't think there's anything wrong with my experience or with my discussing of it, but I do know how often "but have you tried yoga?" becomes a meme around here.

So, yeah, that's why you haven't heard much from you lately. Because, for the past about 2 years, I've been practicing yoga every day and finding it really helpful. And I'm honestly not sure if that experience is one that will be welcomed in this community.

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Recommendations for novels with good disability representation

Does anyone have any recommendations for novels with good disability representation?

Preferably adult characters, preferably not too much romance, and please nothing with graphic sexuality.

Thanks!

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So, I'm currently sitting in a wheelchair at the airport at my gate more than an hour before my flight leaves. (because I followed the airline's advice and got here early.) I actually prefer to think of these wheelchairs as adult strollers because I have no independent ability to move. The wheels lock except when someone is holding the handle.

I'm bored, so I read the instructions / warnings on the wheelchair. And it explicitly says not to leave the passenger unattended in the chair! The stated reason is because the passenger can't move the chair and would be in danger in an emergency.

Now, I'm not worried about emergencies; I have my crutches and can walk if needed.

But I am really annoyed that I can't use the restroom without getting help. (And there is no gate agent here yet to even ask!)

Honestly, would it kill them to use a style of wheelchair that I could push to the restroom myself?

I should add that I don't just use my crutches to walk to the restroom because of my luggage. Carrying my suitcase, CPAP bag, fanny pack, and using crutches would be a quite challenging proposition.

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So, I'm currently sitting in a wheelchair at the airport at my gate more than an hour before my flight leaves. (because I followed the airline's advice and got here early.) I actually prefer to think of these wheelchairs as adult strollers because I have no independent ability to move. The wheels lock except when someone is holding the handle.

I'm bored, so I read the instructions / warnings on the wheelchair. And it explicitly says not to leave the passenger unattended in the chair! The stated reason is because the passenger can't move the chair and would be in danger in an emergency.

Now, I'm not worried about emergencies; I have my crutches and can walk if needed.

But I am really annoyed that I can't use the restroom without getting help. (And there is no gate agent here yet to even ask!)

Honestly, would it kill them to use a style of wheelchair that I could push to the restroom myself?

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I've noticed a pattern, and I really don't like it.

I get through a period of increased anxiety, and pain just smacks me in the face. I know it's because I've been holding tension in my muscles because of anxiety. Then my chronic pain amplifies that soreness into serious pain. And now that my brain is a little calmer it has time to think about the pain.

I know why it happens, but it still sucks!

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Disability is taking the long route because the short route has stairs and no one could be bothered to build a ramp. And then it's somehow your fault when you're late.

Metaphorically speaking. (And sometimes literally, too.)

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Well, I'm finally fully off Cymbalta. Took the last dose about a week ago. And I'm still just so tired. This elevated tiredness started when I started making this medication transition, so it's pretty clear that it's a discontinuation effect. And I know that the only thing to do is wait it out. But my psychiatrist said that it could be months for my body to adjust, since I have been on Cymbalta for about 8 years. And I'm already so tired of being (extra) tired! Just venting.

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Nothing wrong with doing things as slowly as you need to. If you can only progress at 5 minutes a week, then do 5 minutes a week. If you need to do nothing but rest for a day or a month or a year, then do that. Be gentle with yourself.

[Visual description: A hand-drawn snail on a grassy hill says “My pace is perfectly fine. It’s your expectations that are messed up.”]

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I've a rough few weeks.

I'm halfway through the transition from Cymbalta (an SNRI) to Zoloft (an SSRI). Side effects/discontinuation effects from that have included disrupted sleep, mood swings, and drowsiness. (Please don't share your horror stories with me. I have made the decision to do this, and I just need to keep at it one day at a time.)

My anxiety was through the roof leading up to this medication transition. (The last time I tried to transition off of Cymbalta I got so dizzy that I couldn't stand up without holding onto furniture/the wall.) And that has also flared up my chronic pain. I'm holding tension everywhere, and it is so physically painful.

I have a friend here at school who attempted suicide this summer and has told no one else at school about her suicide attempt or the full extent of the mental illness. She has no local support system. (She has a psychiatrist near her parents' home in another state.) Earlier this week I learned that she was still regularly thinking of suicide. Back in August she had promised me that she would find a local therapist, and she hasn't done that. I pushed her on it and got her to agree to go with me to the counseling center on campus and get assessed/assigned to a therapist.

I'm so glad that I was able to convince my friend to get some help, but those days were so mentally and emotionally exhausting. (And I was dealing with this while still having some mood swings from my own medication changes.)

And now I'm pretty sure I've caught a virus. I have had quite a bit of nausea and have vomited once. I'm also just totally exhausted, despite the fact that my sleep is now back to normal. It's pretty similar symptoms to one that a friend of mine had about a week and a half ago, so I'm pretty sure that's what I've got.

Just needed to get that off my chest. I hope you guys are having a better week.

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Psa for truck drivers: please do not pull your truck up all the way into the sidewalk like this:

It blocks the pathway for people who use mobility aids like wheelchairs, walkers, canes, etc like me. We can't get through and in this case it was right at my apartment door so I couldn't get through to the door without handing my mobility aid off which is dangerous. So please keep this in mind if you drive a truck!

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