Dealing with chronic disability, pain, and fatigue

[mamselle]

A recent post prompted this thread, replicating a couple similar threads on the old forum.

Sharing needs and solutions is the point....like everything else, really on these threads.

M.

[smallcleanrat]

Thanks for starting this thread, mamselle.

For context, this is the post on the venting thread that led to the creation of this thread: https://thefora.org/index.php?topic=64.msg19955#msg19955

I'm so overwhelmed trying to keep all my plates spinning: class, lab, quals preparation, physical therapy, significant other, doctor visits. My doctors want me to start an intensive outpatient psych program (10-20hr/week) because of frequent suicidal/self-harm urges, but I look at the calendar and don't see how I can possibly do it. I could theoretically work later into the night and work more on the weekends to get everything done, but realistically, I know I wouldn't have the stamina.

Current strategy: grit teeth and power through until I get past immediate upcoming academic hurdles, thus freeing up more time to focus on getting treatment. I'm almost done with the non-research requirements for my doctoral program: complete one more course, TA one more term, complete oral quals. If I stay on course, I'll be in the sweet land of full-time research (and a more flexible schedule) by the summer. It seems so close, and yet, so far...

[Parasaurolophus]

FWIW, three of the women I went to grad school with have CFS. Well, three as far as I know.

They've had a devil of a time getting taken seriously, both by medical professionals and by the people around them. It sounds absolutely debilitating and awful, and I'm horrified by how quickly it's laid low three exceptional scholars, to the point where two have left academia entirely and the third is plotting exit strategies, because maintaining a regular teaching load just isn't possible.

So, although I have nothing much to contribute to this thread beyond hearing and believing you (and them), and checking my own behaviour, I'll be following the thread with interest.

Yours in solidarity,
-Para

[backatit]

Thanks for starting this; I finally read on the venting thread what you did, mamselle, and I'm sorry. My daughter did that same break trail running, and it sucks. The problem is that you rarely do it without a concurrent sprain, and that takes longer to heal (the force required to break that bone usually comes with enough force to also torque the tendons). Anyway, speedy healing to you. She was crutching it pretty quickly and convinced them to give her a walking boot, which probably wasn't the best solution long-term, but she had an active job working with dogs at the time and couldn't be off her feet for that long (go American working environment!).

Anyway, for those of us dealing with chronic conditions, which I have for many years, there seems to be a cycle. I am better for a while, then I have a cycle of bad times (I'm currently in a really good phase; when you saw me, mamselle, I was in a medium-good part of the cycle, but I'm doing pretty fantastic in terms of self-care and feeling good right now, so I'm wondering when the crash will come :D).  When my pain levels and exhaustion are high, I feel like I am dragging through my days, and I don't usually have the feeling that any good spell will come back. Mine is chronic thyroid issues that they can't seem to get a handle on (I have a decent endocrinologist but in spite of regular changes to my dosage and being on brand-name synthroid, I can't seem to get a steady dosage - it seems like every 3 months they change my dose). I've tried cytomel to add T3 but it makes me feel even worse. Right now, though, I think they've gotten it dialed in, and it'll be good till I start having heart palpitations from it being too high :D.

I also have RA, and I think the current "good spell" comes from a combination of the synthroid dose being ok with a remission period. I took methotrexate when I was first diagnosed, and that was a really rough period (plus I was writing my dissertation, it was in my hands, and I had to get accommodation to take my Qualifying exams; that sucked). But that seems to be stable now, although my hands look...interesting. I use a Mac keyboard which is soft, but I'm looking into virtual keyboards for an even better experience. This has definitely cut into my research, though - I've focused on more teaching-centered positions because they involve less writing.

Anyway, that's my story; my university has been pretty accommodating. I teach fully online (I use a lot of voice to text and video feedback methods to reduce my typing loads, and the students like that) so I don't have to go in as often, which is really splendid of them.

[Anselm]

Thanks for starting this thread, mamselle.

For context, this is the post on the venting thread that led to the creation of this thread: https://thefora.org/index.php?topic=64.msg19955#msg19955

I'm so overwhelmed trying to keep all my plates spinning: class, lab, quals preparation, physical therapy, significant other, doctor visits. My doctors want me to start an intensive outpatient psych program (10-20hr/week) because of frequent suicidal/self-harm urges, but I look at the calendar and don't see how I can possibly do it. I could theoretically work later into the night and work more on the weekends to get everything done, but realistically, I know I wouldn't have the stamina.

Current strategy: grit teeth and power through until I get past immediate upcoming academic hurdles, thus freeing up more time to focus on getting treatment. I'm almost done with the non-research requirements for my doctoral program: complete one more course, TA one more term, complete oral quals. If I stay on course, I'll be in the sweet land of full-time research (and a more flexible schedule) by the summer. It seems so close, and yet, so far...

Do you have the option of paid leave for medical reasons?

[smallcleanrat]

FWIW, three of the women I went to grad school with have CFS. Well, three as far as I know.

They've had a devil of a time getting taken seriously, both by medical professionals and by the people around them. It sounds absolutely debilitating and awful, and I'm horrified by how quickly it's laid low three exceptional scholars, to the point where two have left academia entirely and the third is plotting exit strategies, because maintaining a regular teaching load just isn't possible.

So, although I have nothing much to contribute to this thread beyond hearing and believing you (and them), and checking my own behaviour, I'll be following the thread with interest.

Yours in solidarity,
-Para

I appreciate this message, Parasaurolophus. Being taken seriously has definitely been an issue at times; and I've encountered doctors who got annoyed when I want advice beyond "learn to live with it". I even met one who said, "Well, you've seen a lot of other doctors and they weren't able to help you. I don't know what you expect me to do." This was someone I had had to wait 3 months to get in to see. To get to his office, I had to bus nearly 3 hours one way. He gave me all of five minutes of his time before brusquely shooing me out the door.

Had I given up there instead of pursuing further medical help, I never would have improved enough to start my PhD program. I'd probably still be unemployed with little hope for the future.

Para, do you know what your former classmates are doing/planning to do instead of academia? I feel I really should think about backup plans in case things don't get better or things get worse for me.

Thanks for starting this; I finally read on the venting thread what you did, mamselle, and I'm sorry. My daughter did that same break trail running, and it sucks. The problem is that you rarely do it without a concurrent sprain, and that takes longer to heal (the force required to break that bone usually comes with enough force to also torque the tendons). Anyway, speedy healing to you. She was crutching it pretty quickly and convinced them to give her a walking boot, which probably wasn't the best solution long-term, but she had an active job working with dogs at the time and couldn't be off her feet for that long (go American working environment!).

Anyway, for those of us dealing with chronic conditions, which I have for many years, there seems to be a cycle. I am better for a while, then I have a cycle of bad times (I'm currently in a really good phase; when you saw me, mamselle, I was in a medium-good part of the cycle, but I'm doing pretty fantastic in terms of self-care and feeling good right now, so I'm wondering when the crash will come :D).  When my pain levels and exhaustion are high, I feel like I am dragging through my days, and I don't usually have the feeling that any good spell will come back. Mine is chronic thyroid issues that they can't seem to get a handle on (I have a decent endocrinologist but in spite of regular changes to my dosage and being on brand-name synthroid, I can't seem to get a steady dosage - it seems like every 3 months they change my dose). I've tried cytomel to add T3 but it makes me feel even worse. Right now, though, I think they've gotten it dialed in, and it'll be good till I start having heart palpitations from it being too high :D.

I also have RA, and I think the current "good spell" comes from a combination of the synthroid dose being ok with a remission period. I took methotrexate when I was first diagnosed, and that was a really rough period (plus I was writing my dissertation, it was in my hands, and I had to get accommodation to take my Qualifying exams; that sucked). But that seems to be stable now, although my hands look...interesting. I use a Mac keyboard which is soft, but I'm looking into virtual keyboards for an even better experience. This has definitely cut into my research, though - I've focused on more teaching-centered positions because they involve less writing.

Anyway, that's my story; my university has been pretty accommodating. I teach fully online (I use a lot of voice to text and video feedback methods to reduce my typing loads, and the students like that) so I don't have to go in as often, which is really splendid of them.

Thanks for joining the thread, backatit. I know the frustration of the transience of good spells. A treatment strategy seems to be working until one day it no longer does...

Do you have the option of paid leave for medical reasons?

I don't know how the finances would work out, but I probably have the option of some kind of medical leave. However, I really want to avoid that if I possibly can. Besides complications like probably losing student housing, making progress in my schooling and research is the only thing keeping me from feeling completely useless. Medical leave can be very isolating. Without my work to provide me with goals and some kind of structure, I worry I would completely unravel.

[smallcleanrat]

Feeling irrationally upset over not being able to have a cat (yet).

I live in student housing with a no-pet policy. Yet the neighborhood teems with people walking dogs and cats peering out of windows. My SO talked to some of the animal owners and they all told him they're emotional support animals (and that it's incredibly easy to get approved for one). My SO and others kept encouraging me to apply for one since I love cats and dogs so much, but I held off for a long time. I was hung up over the requirement that the animal be "necessary" to mitigate the effects/symptoms of a disability. I didn't want to exploit the system by requesting an accommodation I didn't strictly "need".

I've found animals to be a great comfort during bouts of anxiety or pain (there is something about a warm, purring feline that soothes in a way no heating pad ever could); they can also help ground me during times when I am struggling against thoughts of self-harm. But is this a need or a 'would-be-nice'? My SO encouraged me to send in the application and let the housing accommodations committee decide.

The letter I got back from them was not a rejection; it was a request for more information (apparently, my doctor only wrote a very brief, 3-sentence note). They told me they didn't have sufficient info to decide whether I actually had a disability (even though I have records on file with the disability office), or what the cat is actually going to be doing for me. They also took issue with my doctor requesting I be allowed to have a "pet" cat, saying support animals are not pets; pets will not be approved. My doctor's been out of town, so he hasn't responded to my messages asking him if he could write another letter.

It sounds like the issue is just that my doctor needed to be more thorough. I'm reasonably optimistic I will get approval eventually. But I am feeling the same way I've felt every time an insurance provider declines to cover a test or treatment because they don't deem it "necessary": guilty, useless, and weak. Part of me interprets these things as saying "You are not really that sick. You are not suffering that much. You don't need this. You should be able to deal with it on your own. The people who get approved for these things have real issues. You are just wasting everybody's time asking for things you don't deserve." I know this is a foolish overreaction, but I don't know how to turn it off...

[mamselle]

Do NOT internalize those messages.

Do NOT.

We on this thread will all tell you not to.

So, DON'T.

   <<channeling Octo's stern gaze>>

I'd ask a different doctor, if possible.

Or ask the people who supply care animals for some sample letters or phrases to give your doc.

It's true they get busy and don't realize that a catch-phrase means something specific in a field not directly connected to the Latin words for bones. (A social worker at a hospital where I used to work had a bunch of pages like this for required letters for things like senior care center admissions, etc.)

You're probably right, and the word "Pet" was a trigger for the people vetting the letter.

   (The letter-vetters? Oh, dear, a new Dr. Seuss character has appeared in my brain...licking a pencil point and wearing a green eyeshade...)

I agree about cats.

They know your soul.

M. 

[evil_physics_witchcraft]

Chiming in with Mamselle.

[AmLitHist]

I stayed home today--a teaching day--even though I was really hoping to get through the spring without any sick days.  After all the months of delay and drama over finally getting the ADA accommodation to a 2-day-F2F teachinig week, I can just imagine the nimrods in HR saying, "Wait!  We gave you a shorter work week--why are you still taking sick days?!".  (Then again, knowing said nimrods, they very well might not even notice until after I retire in a few years.)

Kid #1 was finally diagnosed as bipolar recently (really?  We've known this for years), but because of several severe concussions, so psych meds aren't a serious option. Long story short, she was great over the weekend, then yesterday showed up NOT good, at all.  It's all resolved, and she's better now, but the stress put me over the edge. I was feeling like I'd been run down by a tank by 10 a.m., and it went downhill from there. After finally giving in and taking a pain pill at bedtime, there was no way I was going to try to get up--and drive an hour in to work hung-over and woozy--at 5 a.m. today.

Oh, well, life will go on.  Today was going to be an in-class read, analyze, and discuss day, and we can pick it up next week with no harm.

Is anybody else dealing with S-I joint dysfunction?  Mine is of the "sorry, you're kind of screwed" variety, as my ortho put it. PT makes it unbearable and isn't improving the function anyway; surgery will do more harm than good; and the $8000 "steroid shot under live CT" routine made it feel great--for about 3 hours--so no more of that for me, thanks.  (Besides, I'm diabetic, and steroids shoot my blood sugar through the roof.) Pain management is pretty much what I have to look forward to, but I'm putting it off as long as possible, as I saw Mom through about 5 years of it--again, no, thank you.  Any fellow SIJD people, feel free to PM me, for support and mutual sorrows.

OK, I'll stop whining.  Here's wishing everyone better days!

[smallcleanrat]

I stayed home today--a teaching day--even though I was really hoping to get through the spring without any sick days.  After all the months of delay and drama over finally getting the ADA accommodation to a 2-day-F2F teachinig week, I can just imagine the nimrods in HR saying, "Wait!  We gave you a shorter work week--why are you still taking sick days?!".  (Then again, knowing said nimrods, they very well might not even notice until after I retire in a few years.)

Kid #1 was finally diagnosed as bipolar recently (really?  We've known this for years), but because of several severe concussions, so psych meds aren't a serious option. Long story short, she was great over the weekend, then yesterday showed up NOT good, at all.  It's all resolved, and she's better now, but the stress put me over the edge. I was feeling like I'd been run down by a tank by 10 a.m., and it went downhill from there. After finally giving in and taking a pain pill at bedtime, there was no way I was going to try to get up--and drive an hour in to work hung-over and woozy--at 5 a.m. today.

Oh, well, life will go on.  Today was going to be an in-class read, analyze, and discuss day, and we can pick it up next week with no harm.

Is anybody else dealing with S-I joint dysfunction?  Mine is of the "sorry, you're kind of screwed" variety, as my ortho put it. PT makes it unbearable and isn't improving the function anyway; surgery will do more harm than good; and the $8000 "steroid shot under live CT" routine made it feel great--for about 3 hours--so no more of that for me, thanks.  (Besides, I'm diabetic, and steroids shoot my blood sugar through the roof.) Pain management is pretty much what I have to look forward to, but I'm putting it off as long as possible, as I saw Mom through about 5 years of it--again, no, thank you.  Any fellow SIJD people, feel free to PM me, for support and mutual sorrows.

OK, I'll stop whining.  Here's wishing everyone better days!

AmLitHist, so sorry you are having to deal with your pain on top of being there for your daughter. Hers sounds like a rough situation; I hope she is still doing better now.

I'm still marking time until I can see my doctor again. Office has been unusually unresponsive lately; I sort of feel abandoned. And I need to figure out how to explain how bad the suicidal impulses are without leading anyone to think I need to be sectioned. I've been using minor self-injury to cope, but it only helps for an hour or two at a time. I tried one of those suicide hotlines during a bad spell, but felt worse after talking to them than I did before. The responses were just so cookie cutter: "That must be rough." "I bet that's frustrating." But I'm not really sure what else they could have done when they are working with minimal information about a person's situation. I feel stuck.

[mamselle]

Do you have any friend who could stay with you or with whom you could visit?

The minor self-injury strategy is best avoided in whatever ways possible.

As you note, it's not a lasting solution, either.

Thinking of you.

M.

[backatit]

AmLitHist, I have a similar issue with one of our kids (we have 4; all with varying issues, but one daughter is having some serious issues lately, resulting in me having to come stay with her for a bit), so if you ever need to talk to someone who's been there, done that, let me know. I have a good therapist and I have to lean on him a lot to deal with boundaries and stress. Sometimes I feel like she's going to drag me and my partner down with her...sometimes work is a balm, and sometimes I feel like I can't cope with student's issues at the same time(which are petty, or not-so-petty, but seem really removed from ours at the moment).

Smallcleanrat, I'm sorry that you're having difficulty getting your pet approved. My daughter has a therapy dog, and I've noticed that she helps her, and her counselor also has a therapy dog who works with her, and you might look for that as an option in the meantime. She was able to get in fairly quickly by explaining to the practice that she was in crisis, and they had a sliding scale so that was good. I helped her find this style of therapy via a google search, so it might be worth looking into in the meantime (she needed trauma-based counseling for something that had happened to her, and so we were looking for a very specific set of therapeutic methods). I agree with Mamselle - it would be ideal if someone could stay with you; otherwise is there someone you could call or text when you're feeling bad? There is a tendency not to reach out for support because you feel like you're a burden, but I can assure you that we NEVER feel like that with my daughter, and her friends do not either. We've talked to all of them these past few weeks, and they have been very reassuring and one has come to stay with her from time to time when she's had a particularly rough day and I had to be back home.

[smallcleanrat]

Going to try to post here again when I can be more coherent, but had a therapist appointment today that left me feeling lower than dirt. Towards the end tears were rolling down my face and when she said she had to stop (even though we had started late and our allotted time wasn’t over yet) I grabbed my stuff and bolted away so I could finish crying I the bathroom.

Psychiatrist’s office is still not very responsive about getting me an appointment time. I haven’t had an appointment for over a month.

I want help. I’m asking for help. But the people who want to help me don’t know how and the people who should be helping me don’t seem to hear me.

[mamselle]

Going to try to post here again when I can be more coherent, but had a therapist appointment today that left me feeling lower than dirt. Towards the end tears were rolling down my face and when she said she had to stop (even though we had started late and our allotted time wasn’t over yet) I grabbed my stuff and bolted away so I could finish crying I the bathroom.

Psychiatrist’s office is still not very responsive about getting me an appointment time. I haven’t had an appointment for over a month.

I want help. I’m asking for help. But the people who want to help me don’t know how and the people who should be helping me don’t seem to hear me.

Yuk!

I'm very sorry you had to deal with that.

Good for you for going to the appointment and for doing whatever you had to do to finish it for yourself.

That is NOT how you're supposed to be treated!

Did they say "why" they had to stop? Surely they've dealt with people in tears before!

Stay strong. (At least you know you're stronger than one therapist in the world!)

M.