Dealing with chronic disability, pain, and fatigue

[Puget]

smallcleanrat, I'm very worried about you-- you deserve help and treatment, please tell someone immediately about these thoughts. Tell your SO if you haven't already and have him make a safety plan with you. Tell absolutely everyone in the treatment program till someone really takes you seriously. You are not thinking rationally right now-- you just need to hold on day by day till you are able to get more effective treatment. I really do think you need to be inpatient right now for your safety. Do this for the people who love and care about you if you can't do it for yourself right now.

[Larimar]

Hello smallcleanrat, I have been a long-time lurker, since before the Fora separated from the Chronicle.  I have just finally registered so that I can respond along with Puget.

DO NOT GIVE UP! Keep going to your treatments. You are NOT taking a place in treatment away from someone else. It is yours. Tell the therapist and others treating you what you've said in your last post. Tell them, and keep telling them, how close to the edge you are until they listen and do something about it. Keep going just one more day; keep doing just one more thing. Help is possible, more than possible.

Larimar

[Morden]

Chime to everything Larimar says.
Smallcleanrat, you don't have to feel better right now; you just have to keep going. Lots of people care about you--even people on an anonymous forum. So just keep going to the sessions and tell them over and over what you're feeling.

[Cheerful]

Hi smallcleanrat,

Very sorry you are so miserable.  Count me among the many who care.

I know it's hard to believe now but you can feel better.

Please keep fighting.

Tell your partner.  Tell your friends who are venting to you. You deserve their support, you are supporting them and you would always help a friend in need.

Please call 911 or the National Suicide Prevention Lifeline at 800-273-TALK (800-273-8255).

You matter.  We care.  You can get through another day and get the new help you deserve.  Please.

[smallcleanrat]

I've been holding on and fighting for a long time now. I'm so tired now.

With the new policies keeping everyone at home, I don't actually have a lot of opportunity to carry out an impulse. My SO is home with me all the time. I don't think safety is a huge issue at moment. It's the constant emotional pain I don't know how to endure. Not anymore.

I've been pretty persistent with trying to explain the progression of my symptoms to my treatment providers. But the techniques they teach seem to make a lot of assumptions I don't think are always warranted. When I try to explain why I'm having difficulty applying them to my specific situation I get a generic "Hmm...I see how that can make things tough. Well, moving on..." Maybe individual therapy is better, but my experience has been that a lot of trial-and-error is required to find one that can actually help.

I can't really talk to any of my friends about this. One friend who knows a lot about my situation told me to keep things light if I want people to continue to feel comfortable talking to me. But I'm having difficulty eliciting even generic friendly conversation. I toss out a "What did you do this weekend?" message and get back "Oh, not much. Worked on some writing." I might follow up by asking what they were working on, but it often becomes clear very quickly they are not interested in conversation with me. Very rarely do I get any return questions on what I was up to or working on.

The few people who do know more about what I'm going through are quick to say "please get some help; go see a counselor; hope things work out for you", and then back off as soon as they can; it's just too uncomfortable. They've asked me how they can help; I've said I just want to talk to them more, it doesn't have to be about anything heavy, just some interaction to remind me I have a place in the world outside my apartment. They readily agree to this, but in practice haven't seemed that interested in following through.

I'm terrible company right now. I've been terrible company for awhile. Friendship should involve give and take, and I've got nothing to give.

[Cheerful]

Good to see your recent post, smallcleanrat.  Hope you'll continue posting.  I'm sure many on this board will be happy to communicate.  I certainly benefited from your post about using the term "actually" with a student awhile back. : )

The friend who said to keep things light was insensitive. Probably well-meaning but inappropriate.

I'm sorry, but not surprised, about responses you've had from friends.  It's not unusual. You said "Very rarely do I get any return questions on what I was up to or working on."  In my experience, this is not uncommon, please don't take it personally.  There are numerous friends and acquaintances who I check on: "how are your classes?" "how was your recent trip?" or "are you doing OK?" who go on to answer about themselves but never check on me or ask similar questions.  A good friend of mine is in a knitting group.  She always asks others about what they're working on.  She said no on ever asks her about her projects. I told her "it's not you, it's them."  It's just how some people are.  Some are self-focused, some lack empathy (they can't help it), some have a social blind spot, some aren't warm and fuzzy, some are just trying to get through another day themselves.

Many are struggling under the stress and uncertainty of the pandemic crisis.  This pain is not like yours but may constrain what people would otherwise be able to give in other circumstances.  Again, I want you to know, that friends not behaving as you might wish isn't because you are not worthy, "are terrible company" or not a good friend.

[mamselle]

My whole extended family, with a couple of exceptions, is like that.

They all have kids. I don't.

They're all Republicans. I'm not.

They mostly live in the South and the Midwest. I don't.

I'm willing to listen to the hockey exploits of this one's kid, the pretty-good theater gigs of that one. The announcer-for-the-high-school-football-games visibility of another. I congratulate them, give praise where it's due, and am truly glad for their joys and celebrations. (We avoid political observations....)

Then (sometimes) they ask about me. I excitedly tell them about my findings in this archive; my harrowing trip to Rouen to see that library, with a rail strike going on; my delight in my music student's new work on a hard piece.

Their eyes glaze over, they raise an eyebrow and say "Oh, that's nice," as if I'm making it up to impress them or trying to make them feel bad.

I'm not, I thought I was trying to share my joys at a level that matched theirs. But they don't get it.

So I've stopped attending big family reunions, and I relate to the one or two folks from my high school class who still connect at those deeper levels, and two or three faithful friends where I live now who are supportive, and a few others I've met in my travels with whom there's a strong connection--and that's it.

Even in the churches I've attended throughout my life, there are usually only a couple folks in any one place who hum at the same pitch--and I'm baffled, sometimes, at the level of incurious laissez-faire among those for whom I'd think some of my work and interests would be spot-on.

I've come to think we might each only have a few people here or there who really "get" us, and the point is to cherish those relationships, let the others go, don't expect so much of them, let them find their own forest of like-minded friends, and wish them well.

You can't change others and you can't change situations. You can only change yourself and how you respond to the situation.

Exercise your power where it lies.

M.

[smallcleanrat]

...

I've come to think we might each only have a few people here or there who really "get" us, and the point is to cherish those relationships, let the others go, don't expect so much of them, let them find their own forest of like-minded friends, and wish them well.

You can't change others and you can't change situations. You can only change yourself and how you respond to the situation.

Exercise your power where it lies.

M.

mamselle, the following is written from a point of frustration. But please know it is not intended as a swipe at you personally. I do appreciate you continuing to respond to my posts to add your perspective.

But....

I was looking for the equivalent of water cooler chat. Is that expecting "so much of them?"

And those last two lines are like salt in the wound at this point. No, I can't change others, but how much can I really change about wanting those connections and feeling pain over my failure to forge them? Some of these people I did consider myself close to; people who "get me" more than most. But like Cheerful says they are likely too buried under their own stress to be available. Knowing there is a reasonable explanation does not make me feel any less lonely. Exercise my power? What power? I'm so depleted of energy and hope. My mind is forever in fog. I hurt all the time. Treatment after treatment has failed to have any lasting impact. If I were a dog, I would have been euthanized long ago and replaced with a livelier pet. There's a reason they call it putting an animal "out of its misery".

[Puget]

smallcleanrat, I'm relieved to hear you are home with your SO looking out for your safety.

Sometimes when we need them most people don't show up for us. It's not fair, and it's not right, but it happens. Maybe they're self absorbed, maybe they are just overwhelmed, maybe they just don't know how to help and are scared to try, but whatever it is it is NOT your fault.

I for one would be happy to chat with you here. I know it's not the same, but let us be your digital water cooler buddies!

[mamselle]

Yes, that's a great image.

Count me in as a water-cooler buddy!

Sorry if my post was upsetting; I actually do think you have a lot of power (if my physics class definintion still holds, power = force over time, and you are clearly exerting that, tiring as it may be: so, I would say in that sense, you really DO have power.)

But I agree, it's maddening sometimes.

In any case, I agree, please do continue to post, your voice is most welcome here!

M.

[smallcleanrat]

Thank you, Puget and mamselle.

I'll try to keep posting here. It does help to hear from other forumites.

Part of my frustration might be, with SO nearby at all times, I haven't been able to fall back on self-harm as a coping strategy.

Something new developed. For a couple of days going into the weekend I was convinced that if I stayed alive terrible things would happen to people I care about. I had vivid imagery going through my head of a lab mate being hurt in a car wreck, my PI developing some kind of serious illness, a friend's child being kidnapped, etc... It wasn't like a hallucination; I wasn't seeing things as if they were in front of my eyes. But it was more vivid than ordinary thoughts, like a vision (and I don't believe in psychic visions). It was scary and upsetting; I cried and felt conflicted, thinking that by not killing myself I was hurting other people.

My head was so hazy it was impossible to think rationally at the time.

These feelings gradually receded over the last couple of days. I don't know if I need a meds adjustment or if this is some combination of exhaustion and stress. I'm just glad I didn't send a flurry of messages checking the status of everyone I know. That would have been awkward to explain.

[Puget]

Thank you, Puget and mamselle.

I'll try to keep posting here. It does help to hear from other forumites.

Part of my frustration might be, with SO nearby at all times, I haven't been able to fall back on self-harm as a coping strategy.

Something new developed. For a couple of days going into the weekend I was convinced that if I stayed alive terrible things would happen to people I care about. I had vivid imagery going through my head of a lab mate being hurt in a car wreck, my PI developing some kind of serious illness, a friend's child being kidnapped, etc... It wasn't like a hallucination; I wasn't seeing things as if they were in front of my eyes. But it was more vivid than ordinary thoughts, like a vision (and I don't believe in psychic visions). It was scary and upsetting; I cried and felt conflicted, thinking that by not killing myself I was hurting other people.

My head was so hazy it was impossible to think rationally at the time.

These feelings gradually receded over the last couple of days. I don't know if I need a meds adjustment or if this is some combination of exhaustion and stress. I'm just glad I didn't send a flurry of messages checking the status of everyone I know. That would have been awkward to explain.

Good, keep posting! We're here, and if we don't respond right away it's not because we don't care.

What you are describing are delusions. I'm sure they seem powerfully real, but they are not, as you know. It's good they've subsided, but I would definitely check with your psychiatrist about possible med adjustments, since you've had both hallucinations and delusions recently. I also think individual therapy is a really good idea, since the groups don't seem to be a good fit.

What are some healthier coping strategies that you could try?  If the tools you're being offered in therapy aren't helping, perhaps you can enlist your SO to help you brainstorm some others. Anything that grounds you in the here-and-now, rational world and/or boosts your mood, even temporarily, is worth trying. Harness your skills as a scientist to experiment and see what might work for you.

[Puget]

[accidental duplicate post deleted]

[Morden]

Hi Smallcleanrat, I hope you're doing relatively OK. I looked for you at the watercooler, but didn't see you.

[namazu]

Hi Smallcleanrat, I hope you're doing relatively OK. I looked for you at the watercooler, but didn't see you.

(Which is now located here: https://thefora.org/index.php?topic=1202.0 )