Dealing with chronic disability, pain, and fatigue

[mamselle]

Another way to be in touch with furry four-foot critters over a longer period is to volunteer in a shelter.

The cat thread (Herd Your Cats Here) discusses that often: two or three forumites are longstanding volunteers and post about their friends.

There are also some vets offices that have one or two slots for volunteer caregivers, or in some cases, paid short-time assistants who help walk or do basic cage care and feeding for animals that board there.

I'm glad your appointment is coming up soon (interthreaduality); I agree it's important to be very clear about all that's going on, and I'm very glad your PI remains supportive.

M.

[smallcleanrat]

Have you read Educated by Tara Westover? You might find it an interesting example of someone who chose life over a non-supportive, dysfunctional, and in the end abusive family. I'm not saying your own family background is as terrible as hers, but you might find the book inspiring.

You need competent professional assistance. Now. The suicidal urges and self-harm you describe are not something you can work through on your own.

Thanks for the reading recommendation, spork. I grabbed a copy from our library; I'm about 50 pages in so far.

I'm definitely seeking professional assistance... It's a lot of trial and error.

[smallcleanrat]

dragging...dragging...dragging...

May have been overambitious with work this week. Planned way too many experiments considering I just started an outpatient program which is in itself a significant time commitment.

I'm exhausted without being sleepy. Just shutting down. Trapped in a heavy fog. Trying to get my body in motion for lab-work. Trying to get my mind to focus on all the reading and writing I've got to get through today and tomorrow; assignment is due, has to happen somehow. No real mood tonight; no sadness or anxiety or frustration; just nothingness.

Odd thought warring with urge to jump out window: My desk is untidy. I can't leave behind a messy desk for someone else to deal with. That's just inconsiderate.

Most likely won't do it. Just like I haven't done it all the other times I've thought about it, even the times I've opened the window, sat on the ledge, and dangled my feet imagining what the fall would feel like. Getting to a point of feeling pathetic for thinking and talking about something so long without going through with it. Don't like being wishy-washy. Still, the desk...and I don't know how many other loose ends to be tied...

I've been trying to get clear of this fog for years. I'm running low on optimism. I don't want this to be my life; if it's not going to get better what's the point of this struggle? I'm no use to myself like this; no use to anyone else either.

Probably need to find a place to curl up and close my eyes for a bit. See if I can recharge just enough to finish today's tasks.

EDIT: And....just sliced a finger on a piece of equipment. At least it was the last lab task of the night.

[Puget]

Take care of yourself-- the tasks can wait, taking care of your health cannot. Ask for an extension, go on leave if you need to-- treatment takes priority right now.

That you have to acted on these thoughts makes you strong, NOT weak. You have the strength to continue even if you can't see a better future yet. Keep talking, keep checking in. The more you talk about these thoughts to people who care about you, the less power you give the thoughts over you and the more chances you have to finds support. Rest now and go to your treatment tomorrow. Be kind and gentle to yourself. You are loved and valued even when you can't love yourself. 

dragging...dragging...dragging...

May have been overambitious with work this week. Planned way too many experiments considering I just started an outpatient program which is in itself a significant time commitment.

I'm exhausted without being sleepy. Just shutting down. Trapped in a heavy fog. Trying to get my body in motion for lab-work. Trying to get my mind to focus on all the reading and writing I've got to get through today and tomorrow; assignment is due, has to happen somehow. No real mood tonight; no sadness or anxiety or frustration; just nothingness.

Odd thought warring with urge to jump out window: My desk is untidy. I can't leave behind a messy desk for someone else to deal with. That's just inconsiderate.

Most likely won't do it. Just like I haven't done it all the other times I've thought about it, even the times I've opened the window, sat on the ledge, and dangled my feet imagining what the fall would feel like. Getting to a point of feeling pathetic for thinking and talking about something so long without going through with it. Don't like being wishy-washy. Still, the desk...and I don't know how many other loose ends to be tied...

I've been trying to get clear of this fog for years. I'm running low on optimism. I don't want this to be my life; if it's not going to get better what's the point of this struggle? I'm no use to myself like this; no use to anyone else either.

Probably need to find a place to curl up and close my eyes for a bit. See if I can recharge just enough to finish today's tasks.

EDIT: And....just sliced a finger on a piece of equipment. At least it was the last lab task of the night.

[smallcleanrat]

Take care of yourself-- the tasks can wait, taking care of your health cannot. Ask for an extension, go on leave if you need to-- treatment takes priority right now.

That you have to acted on these thoughts makes you strong, NOT weak. You have the strength to continue even if you can't see a better future yet. Keep talking, keep checking in. The more you talk about these thoughts to people who care about you, the less power you give the thoughts over you and the more chances you have to finds support. Rest now and go to your treatment tomorrow. Be kind and gentle to yourself. You are loved and valued even when you can't love yourself. 

Thanks for the words of support, Puget. It was a positive message I could focus on. I think I need to avoid late nights alone in the lab for a while. Being alone seems to make things much worse.

My next outpatient visit is tomorrow. It's been an interesting experience so far, if not directly helpful yet. Best thing I've got out of it so far is meeting the other patients and hearing their experiences and perspectives. There is a common theme of "I thought I'd be further along in my life by now."

Ended up rescheduling some of the lab tasks to spread out the work. Also got an offer from a labmate who saw I wasn't feeling well to be an extra pair of hands on one of my experiments later this week. I've been pretty lucky to end up in such a friendly and collegial lab.

Decided to turn the assignment in almost-but-not-quite completed. As long as I pass the course, it's fine. I don't need to ace it; gpa is fine (if it matters at all beyond staying above the threshold to continue the program).

But I don't just want to get by; I want to feel alert, alive, and part of the world again. I don't know how much longer I can stand being trapped in this fog.

[mamselle]

I'm encouraged, too, by your well-thought-out responses to the things you're dealing with.

Re-scheduling lab tests to spread them out over time is wise, it reduces pressure in ways that are negotiable and have no-harm/no-foul dimensions.

Being able to accept an "OK" grade to pass instead of pushing for perfection is huge--it takes some people a lifetime to learn that.

A preacher at a chapel program in a high-pressure school once spoke about overcoming the "disease of perfectionism," and the tendency to make an idol of "the perfect." Another in the same community once spoke of the need to learn to value "satisfaction" over "success"--messages I've often also had to contemplate.

Avoiding late nights alone and getting help from (I agree, wonderful) labmates is also a good plan.

Keep at it, you're making good choices and moving forward at your own pace.

And you clearly have people in your court....that's so cool.

M.

[smallcleanrat]

Sitting in lab trying to clear my head.

Completely unable to participate in today's therapy groups due to crying through every session. Not much noise; no sobs; just a heavy feeling and tears spilling out continuously. I don't really know why.

Social worker tried to talk to me at the end of the last session, but all I could really say was I wanted to leave. He asked if I felt safe, I muttered "I don't care", and walked out. He let me go saying he'd call me tomorrow. Not that I really wanted to be detained, but the fact they let me go so easily seemed a bit off to me.

Just sitting now. How is it possible to feel empty and heavy at the same time?

[smallcleanrat]

Feel like I'm shutting down. Heavy, tired, foggy.

Yesterday sat on the ledge of an open top floor window staring down. Not sure how long. Normally I don't like heights; even when feeling suicidal, looking down can make me  feel uncomfortable. Yesterday, I didn't feel anything. It didn't seem real. I don't remember climbing back down but logically I must have.

Why can't I take that final step? If it's because deep down I don't want to die, then why do I think about it all the time?

[mamselle]

It sounds as if you've been holding on to a lot of pain for a very long time.

Beginning to address it is both scary, and, well...ugly. A lot of that stuff is swirly, dark, and smelly, and having the courage to look at it straight on doesn't make it any more pleasant.

It's also hard, sometimes, to see how someone else can help, but that doesn't mean they can't, just that you're exploring new territory in letting them into the ugliness you've been curating.

The fact that you now have the support to do so is important; next time the group leader asks you if you want help, maybe you could nod and ask "how can you help me?" since it might not be clear to you, but they might in fact be able to do so.

M.

[smallcleanrat]

It sounds as if you've been holding on to a lot of pain for a very long time.

Beginning to address it is both scary, and, well...ugly. A lot of that stuff is swirly, dark, and smelly, and having the courage to look at it straight on doesn't make it any more pleasant.

It's also hard, sometimes, to see how someone else can help, but that doesn't mean they can't, just that you're exploring new territory in letting them into the ugliness you've been curating.

The fact that you now have the support to do so is important; next time the group leader asks you if you want help, maybe you could nod and ask "how can you help me?" since it might not be clear to you, but they might in fact be able to do so.

M.

It's like I can't wake up properly. It's hard to interact with people when I feel this tired and foggy. Sometimes it feels like I have to make a conscious effort to breathe.

The outpatient program is a lot less structured than I thought it would be. There is no set schedule for the therapy groups, so it's a toss-up whether the days you are scheduled to go in will coincide with groups that are relevant to you. I end up sitting in groups like Anger Management, which I don't need, just because that's what happens to be available. Tried to attend a Distress Tolerance group only to be turned away because it was full. So far, there hasn't been a single group that directly addresses self-harm or suicidal ideation or intrusive thoughts or dissociation.

The advice is also pretty generic and nothing I haven't heard before.

-Try to find a way to distract yourself.
[I can't do this forever. I'm so, so tired. I don't know how long I can keep this up.]

-Don't be afraid to reach out to friends and family for support. Concerns that you might look weak or that you are burdening them are based more in your insecurity than reality.
[Eh...not my family. And I've definitely had friends pull away and shut me out, even if I didn't reach out to them. The fact that I was having issues at all made them uncomfortable enough to cease contact. Sometimes a person may want to help but not know how (or be willing and able to provide that help). In which case, you haven't made your situation better, you've made theirs worse by adding stress and guilt. And even a supportive person can get burned out if they are simultaneously dealing with their own issues or if you try to lean on them too frequently. This rarely gets mentioned.]

-Remind yourself that you won't feel this way forever, that you can get through this.
[Except that isn't always true is it? I may never be free of this. I meet people in the program who are 10, 20, 30 years my senior who've been in treatment for decades. They are still miserable. I've tried so many therapies. So many medications. It helps, but it never gets me back to the way I used to be. Every time I think I may be breaking free, I'm pulled back down again. This latest downswing has lasted almost five continuous years. I've been striving, fighting...but now I am utterly exhausted.]

If it's not going to get better then what I need is guidance on how to reevaluate my identity and goals in life. I push through with my grad school work under the assumption that someday I will be stronger. I will regain energy. I will no longer lose touch with reality. I will regain my previous range of thoughts and emotions instead being stuck in this muted internal existence. If my assumption is faulty and none of this is going to happen, I don't see how I can sustain a research career. I just won't have the stamina to continue year after year.

If this diminished existence has become my new baseline, it changes the way I think about my life. SO wants to raise a family. I sometimes wonder if the most loving thing I can do for him is to let him go so he can find a partner who can definitely do this with him. I don't know if I have the strength to get through a pregnancy and birth. I'm terrified of post-partum depression and psychosis. Even if we can adopt, there's still the question of whether I can be the parent a kid deserves. How can I take care of them, bond with them, make sure they feel loved if there is always this haze of fatigue and depression separating us? Who wants to be raised by a zombie?

I'm not consciously trying to shut down. I'm trying to reactivate. But if I'm fighting a losing battle, then the struggle is pointless.

[Puget]

smallcleanrat, I hesitate to suggest both these things because I'm definitely not a healthcare provider but--

1) It may be time to consider seeking in-patient treatment to keep yourself safe as you work to get better. At the very least you need a good safety plan. From what you've been posting I'm very worried about you.

2) You may want to talk to your psychiatrist about whether trying ketamine may be an option. It may not be, and forgive me if you've already explored this, but it has shown a lot of promise for folks who have not responded to other treatments and who are actively suicidal. When it works it works fast, and can provide a jump start to engage more effectively with CBT and other therapies.

Since you're in the field, I'll leave this link here in case you want to learn more about the science behind it:
https://www.sciencedirect.com/science/article/pii/S089662731930114X

Hang in there-- there is hope! If not from this medication, then from other drugs and therapies down the road.

[mamselle]

I'm glad the outpatient program has some of the things you need, sorry it may not offer everything, but it's important that you have a contact there and are in touch with others as well.

I'm also wondering, along the lines Puget mentions, if they have any part-time admission programs: a friend dealing with depression a while ago was able to be out during the day for some number of hours, then check back in at night and over the weekends, so as not to be unsupported in the kinds of times you describe, when structured work was finished and she found herself dealing with her more difficult thoughts and feelings alone.

The fact that you are consistently trying, working towards health, and staying aware of your needs and responses means that you have the resources at hand that you need to pull through.

You become stronger as you fight the fog. It may be tiring, but you're showing yourself each day that you can do it. And you're building resilience.

Did you also realize you're an encouragement to others? Your transparency and courage are valued.

And I wouldn't focus too much on children right not. You are parenting yourself through a birthing process right now, you are giving birth to a new, healthier self and that's as much as you need to focus on right now.

If SO is a cool as he appears to be, he'll understand, and be able to wait for you to be in a better place in order to decide.

Step at a time, a day at a time.

You can do this.

M.

[smallcleanrat]

smallcleanrat, I hesitate to suggest both these things because I'm definitely not a healthcare provider but--

1) It may be time to consider seeking in-patient treatment to keep yourself safe as you work to get better. At the very least you need a good safety plan. From what you've been posting I'm very worried about you.

2) You may want to talk to your psychiatrist about whether trying ketamine may be an option. It may not be, and forgive me if you've already explored this, but it has shown a lot of promise for folks who have not responded to other treatments and who are actively suicidal. When it works it works fast, and can provide a jump start to engage more effectively with CBT and other therapies.

Since you're in the field, I'll leave this link here in case you want to learn more about the science behind it:
https://www.sciencedirect.com/science/article/pii/S089662731930114X

Hang in there-- there is hope! If not from this medication, then from other drugs and therapies down the road.

Thanks, Puget. (Especially for the link)

Maybe going in-patient is a good idea, but I'm considering that a last resort. For patient privacy, most units don't allow cell phones or laptops, so it would mean difficulty communicating with my friends and my partner and no chance of getting any work done. I'm too worried about losing my place at school; it's not always easy to reintegrate. Even though it frustrates me that I am nowhere near performing at full capacity, being a part of this lab and working on this project gives me a big reason to keep fighting. If I lose that, I will feel adrift.

Talked to a different social worker at the program yesterday. Told her about the loss of hope, sitting on the window ledge, etc... She ended up calling SO to work out a plan for the weekend to make sure I do not spend any time alone (allowing for suicide opportunity); I see her again Monday to check-in. It sounded as if she would have made me an inpatient if I lived alone and couldn't have someone checking on me frequently outside a hospital environment.

Because I feel so shut down and foggy, it's easy to imagine just opening up a window and casually flinging myself out. I had a vague notion earlier that if I jumped I might fly; but there's enough rational thought to recognize this might not be true. There's also a dremel in the lab and it would be easy to do some serious damage with it; I've found myself toying with it by getting the blade as close to my skin as possible without actually touching. It's this dreamy state of unreality that dampens fear of consequences.

I still feel so worn out. I want to wake up and be able to think clearly, but nothing is working. I slept, ate, took a walk, tried to shock my system by hugging a large frozen ice pack, tried to have a conversation with SO...nothing is bringing me out of it. I think last week some switch flipped in my brain. I've gone from fighting the suicidal thoughts to fighting whatever is holding me back from acting on the suicidal thoughts. It now feels like the right thing to do, and I feel ashamed that I have  yet to follow through.

What's holding me back now is thinking of the consequences: other people will be hurt/traumatized emotionally, somebody's going to have the chore of cleaning out my things, many suicide attempts fail leaving the person alive but possibly seriously injured/permanently disabled... And it's not so much that I want to die as I don't want to live in this fog anymore. If it's going to be there for the rest of my life, why would I want that life to be a long one?

My psychiatrist gave me a referral for a TMS evaluation. I'm going in next week. They told me it has about a 50% success rate; not great, but not bad, I suppose. If that doesn't work, I think I will ask about ketamine. I had read that it induces a dissociative state, which was why I had no interest in it before; but I'm running out of things to try. Thought it was especially interesting the article mentions attempts to find a therapeutic dose that doesn't induce dissociation...

I know I'm supposed to keep fighting, but how can I do that when my head is so muddled? How can I wake up and muster the energy?

[Puget]

I'm glad the new social worker took you seriously and helped you make a safety plan.

I understand your reluctance to go inpatient but your level of risk honestly sounds really high right now, so it may be necessary to step away from the work for a little while in order to make it through this and come back able to function better.

Your SO cares about you. Your lab-mates care about you. Even strangers on the internet care about you. Just take it a day at a time-- you don't have to see you're way through yet, you just have to keep going for now.

[smallcleanrat]

Lab is shut down. Classes being taught online. All lab meetings through Zoom. I am not handling this well.

The outpatient program seems to have worsened my depression and suicidal thinking. Days I go in I usually do nothing but cry. It's difficult to concentrate and engage in the therapy groups. When I do participate I feel like I'm being dismissed rather than helped.

Been trying to explore other options, but things are so chaotic with the pandemic it's not easy to get people's attention.

Every day there is despair that physically pains me; my chest hurts and at times I have to fight to keep breathing. I'm so exhausted even minuscule tasks take a great deal of effort. People think it's when you are planning to act on suicidal impulses that you need help the most; but these periods in which I can keep myself alive but living just feels so wrong...these are the times I hurt the most because I don't have the comfort of thinking things will be over soon. These are the times I most crave comfort and a sense of belonging.  But everyone is so stressed now; I've had friends contact me to vent, and it didn't feel appropriate to try to drag them into this.

I can't make a half-hearted, ill-planned attempt that just lands me in the ER. The health care system is overwhelmed as it is. It would have to be all or nothing.

Given what's happening, even people without chronic mental illness will be experiencing anxiety and depression. If I drop out of treatment it would free up space for someone who could actually be helped.

I've tried. I've really tried. But I'm not getting better and I just want to stop hurting. The more I think about it the harder it becomes to rationalize staying alive.