I’m always in pain and always tired

[oliver-kittycat]

Hi everyone, I’m here again. I guess I just need to vent and ask about coping strategies etc.
As I mentioned in my post about having PCOS, I’ve been having really bad fatigue. Unfortunately it hasn’t really let up. A lot of days I find myself going back to bed for a few hours, and it sucks, because I really want to do so many things but I just don’t get to because I’m exhausted. My room is a mess, I still haven’t unpacked from an event a month ago, my desk is a mess too, I have so much trouble getting any work done — I finally got on ADHD meds back in June and they worked at first, but now they kind of aren’t helping at all with my executive function, they’re basically just what’s keeping me able to do anything at all.
If that wasn’t enough already, there’s the pain. I’m very hypermobile and have known this for years; over the years, often my joints would hurt a little, especially in the winter. Recently, however, it’s gotten pretty bad. When I went to my summer camp, the amount of walking involved caused me so much pain that I had to use a cane every day, something I’d only ever had to do for a few days last year at that same camp. It’s not even really that much walking. All the other kids were able to do it no problem.
Since then, I kept having quite a bit of joint pain in my legs, but it was manageable. But then about a week and a half ago I squatted weird while trying to cut my pubes and something went really, really wrong in my hip. The back of my hip hurt so bad. I don’t even know how I managed it, but I got my pants on again and put the scissors back, then went to my mom in the kitchen and told her I squatted weird and my hip hurt really badly. She got me to lie down on the floor to try and realign whatever went wrong and long story short, I ended up literally crying from pain on the floor for upwards of half an hour. It’s genuinely the worst pain I’ve ever been in. I couldn’t even sleep in my own bed that night since it has a ladder and I couldn’t stomach the idea of trying to climb a ladder in that state.
That specific pain has mostly gone away, but all the joints in my legs have been in a lot of pain still. It hurts to stand, sit when I don’t have something supporting my feet, or lie down a lot of the time. It’s not unbearable but it’s still really not fun.
I don’t know. This is just really awful. I hate being this tired and I hate feeling fragile. I just want to be capable of all the things I used to be capable of, and I’m so scared of the idea that this will just keep getting worse. It just sucks

[Heather]

Hey there, oliver-kittycat.

I'm also someone who has lived with a lot of chronic pain, sometimes for decades, chronic illness, and who has lost abilities, starting in childhood. I completely hear and feel you with how hard all of this is and feels, including how difficult it can be -- especially in such an ableist world, a thing all of us also have internalized to some degree -- to reckon with being able to do less than you could before, or for things you could do before easily or without pain now being challenging and painful. The last time things were at their worst for me was when some of my lumbar spine crumbled over about a decade, which got to the point of creating both complete immobility, and pain all the time, even when laying down or trying to sleep. (Thankfully, spinal surgery solved for much of that one for me, for now, anyway.) I'm really sorry you are living with all of this.

I think that a grief process with all of this, on the whole and in the day-to-day, is really important. I'm glad you expressed these feelings here and I hope you can continue to let yourself feel them and just go through what you need to emotionally. I think reading what you can from other people struggling with chronic pain, illness and disability, and/or connecting with them directly often helps a whole lot: the isolation of it all really adds to the bad of it. I'm happy to talk more with you myself about living with things like this if you want. You might also go through the disability section of the website if you haven't already. There's a lot in there for folks with chronic pain and illness. <3

Just as important, though, is being sure you're able to manage your conditions as much as possible so you don't have to suffer any more than is necessary. Same goes with making what accommodations you need (like maybe a bed you need to climb up to isn't going to work for you anymore). Do you have a diagnosis and a treatment plan for this pain and the cause of it, yet?

[oliver-kittycat]

Hi Heather, thanks so much for your reply.
Grief definitely is the right word now that I think about it. It’s really scary, though. Honestly, the uncertainty is probably the worst part. I don’t know if it’s going to get worse, or by how much, so grieving it properly is kind of awkward. If I knew what was going to happen, I might be able to come to terms with it more easily, but I don’t.

I read through some of the articles in the disability section, and they were definitely helpful. Do you know of any communities or resource libraries for this sort of thing? Maybe especially for young people?

I’m usually fine climbing up the ladder (so far, at least), it’s mostly just walking or staying in a position for a while that sets the pain off.
I don’t have any diagnosis. My parents are a little hesitant to go that route, because it could impact future opportunities and that sort of thing? Like, obviously one possible diagnosis is EDS, and my dad said you can’t really get a mortgage if you have that, which is not a fun idea. I don’t know, it sucks because I won’t really know if what I have is bad enough that a diagnosis would be helpful without talking to a doctor, and if it wouldn’t be helpful then it might just be harmful.
I don’t have any kind of treatment plan either really. I am going to a physio on Tuesday, so they might be able to help?

[Heather]

Yes, I absolutely understand what you mean. I have felt that way in the past, and I still feel that way now! My spinal disease that caused by back to do that isn't cured, it just hasn't done more damage yet. Will it? Who knows. I have also been in a space in the last year where I have figured out how to manage my ME/CFS so it isn't often symptomatic. Will that last? Will I always have the time and money to even do all these things? Again, who knows, and it's really awful not to know. I mean sure, all of life is unpredictable, but this is an area where unpredictability can feel especially scary.

Do you have any experience going through a grief process? If not, would you like some resources? Per the other resources you are asking for, are you wanting that with general disability/chronic pain, or more for something specific?

For the record, I don't think your Dad is right about that with the mortgages at all, Ireland has some pretty clear rights for folks with disabilities, including with housing: https://www.ihrec.ie/factsheets/disabil ... tatus-acts

I also have to say that I personally don't think anyone is well-served by not getting diagnosed and treated for a condition causing them pain and immobility. An EDS or other chronic diagnosis should not, in 2025 (maybe your folks haven't kept current with their knowledge about disability rights, or maybe it's just outside their knowledge, period?), limit your opportunities. On the other hand, not knowing what you actually have, if you can find that out, and what you can do to suffer less and to care for yourself with whatever the cause of your pain is sure will, you know? That can limit you in a whole bunch of ways, including the impacts not knowing and not knowing what to do has on your mental health, all itself, just like you mentioned up top in this last reply.

I'm glad you have a PT appointment Tuesday, and I'd for sure get their opinion about this.

[oliver-kittycat]

Yeah, it’s kind of terrifying. I’m just really wishing it wasn’t happening right now.

I don’t have any experience with grief really, no. It definitely would be helpful to have some resources on it.
General disability/chronic pain stuff would be useful for sure, but if there’s anything more specific I’d also very much like to see it.

Ooh, alright, I didn’t know about that. I think the main problem may be insurance? That it’s very difficult to get the kinds of insurance you need for a mortgage if you have this kind of disability? I really don’t know anything about this stuff though.

Yeah, I think my parents think that a doctor might not really be able to do much to help treat it. I don’t know. I’ll probably talk to them again about it, and try to figure out a pros and cons list maybe. I would really like a diagnosis, honestly. I feel like it might help me with the uncertainty a bit.

Yeah, I’m definitely going to ask the PT about everything, and try to explain all the problems I’ve been having. I’m kind of hoping she’ll be like “oh something is REALLY wrong” and refer me to someone about it because like, that would kind of validate it, you know? I dunno, I’m just hoping *something* will happen

[Heather]

Yes, I get that hope, and I would be pretty surprised if you left without a referral, so long as you tell the physio all the things you shared here.

Again, I think you have more rights as a disabled person with or without a diagnosis than your parents think, and I also think that worrying about if you can get a mortgage because of a diagnosis doesn't make a lot of sense, because buying a house in the first place is something that will be awfully difficult to fund if you are in unmanaged pain all the time. I just don't think avoiding diagnoses or care is ever a good call, strategically or otherwise. There's also actually a lot that can be done to help people manage conditions like EDS, but you're not going to be able to access a lot of it without a diagnosis. I'm sure your parents have your best interests at heart, but it really is sounding like this just may be an area they don't know a lot about. I hope that they can become more flexible in their approach: if and when you do get a doctor to see you about this, that person might be able to talk to them and help with that, too.

Let me ask around about those resources, and especially see if I can't find some things for you that are in Ireland. One of our ex-volunteers from a million years ago works in human services in Ireland, and I bet she will have some good ideas. I'll circle back when I have something!

In the meantime, if you're a reader, you might try and get your hands on Alice Wong's "Disability Visibility," "The Future Is Disabled" by my friend Leah Lakshmi Piepzna-Samarasinha, or "Demystifying Disability: What to Know, What to Say, and How to Be an Ally" by Emily Ladau. All great stuff and can help you feel more connected to disability community, I'd say. Looking up those folks online by itself will lead you to a treasure trove of good stuff. <3

[oliver-kittycat]

Yeah, I don’t know, I talked about it to my mom and she said that the only thing that can really be done for hypermobility is strength training? But from what you’re saying it doesn’t sound like that’s the case. I think after we go to the physio we’ll decide whether or not to go to a doctor. They’re not like actually resistant to me going to the doctor, I think they just wanted to caution me.

Thanks very much for looking into it, I appreciate it a lot!!

I’ll have a look into those books/authors for sure. Thanks so much!

[oliver-kittycat]

Man I don't even know what I'm doing. I have no idea what I even have and neither do my parents. I went to the physio, I didn't get a referral but I did get exercises to do for my joints and they're helping, but god it's so hard to get myself to do them. My ADHD meds feel like they've fully stopped working except to fill up my energy tank, and I genuinely have no idea how much they're doing that, because I still go back to bed for hours daily.

A few weeks ago my parents implemented a curfew for screens at 10pm to help us sleep better, and while it's helped me get to sleep earlier, it's kind of not helping much with the amount of sleep I get at all. I usually get to sleep sometime past 11pm, sometimes past midnight, and then wake up usually *before* my alarm which is set at 8:30. Sometimes minutes, sometimes hours earlier. So, like, 8 hours max, which I was already getting. I don't know why, but I doubt it's helping my energy. And then I stay in bed for hours unless something I have to do makes it so I need to get up, and even then, just the action of getting out of bed is difficult! I have to hype myself up for it! It's not like I can't do it but god it feels like a trek from my pillow to the ladder.

And then there's my nails. For years when I was little, I'd bite my nails. And I'd been over it for years, but recently, it's come back, and even more recently it's gotten *really bad*. Last night I drew blood for the first time in years. It's awful. I literally can't stop. I don't know what's wrong with me.

Every time I manage to force myself out of bed once I've gone back, I get fucking chores, and it's awful because I'm having a hard enough time being out of bed! I just had a conversation with my mom about this and she said what she's been saying recently, that she thinks I need to be out of bed and doing things because she "doesn't think that the nature of my fatigue is the same as hers" (oh yeah, she has fatigue too, except it's from whatever the fuck she has that causes her migraines, which i don't get, so I don't even have whatever she has) and when I asked her what she meant by that, she said she thought it was depressive.
The thing is, I'm not depressed. I don't feel depressed in the slightest. I don't feel empty, or sad all the time, and most importantly I *want* to do things and it bothers me intensely that I can't! I want to live my life a whole lot! So I told her that too, and she took it on board, and she said she thinks I should do science about what does intensify the fatigue, but the thing is I literally cannot afford to do science. I can't risk a crash, because I have so much shit to do. Mostly school stuff (I'm homeschooled, which means I also have to be the one to make myself do all my schoolwork). I'm working towards the Leaving Cert, which is basically what lets you go to university here, and I'm gonna take that in like two years, so I have to study, but god, I'm so tired. It's so hard. Not to mention that if this *does* get worse then how the hell am I gonna survive university? How am I gonna handle living alone?

Honestly, my mom having fatigue too is really awful, because since my dad works full-time (remotely, but most of the day he's in his office), so it's up to her, me, and my little brother to make sure we're all, like, fed, and that the house isn't a complete mess. But it genuinely feels like I can't do my share of the housework, because I'm like this, and then my brother is 14 and doesn't really know how to cook right because he won't READ THE COOKING BOOK WE KEEP TELLING HIM TO READ, and he doesn't want to clean he just wants to play video games, and my mom is exhausted and STILL all the housework ends up falling on her so I feel awful.

I just don't know. We're hopefully gonna get me to the doctor tomorrow (after which i have my stupid driving theory test. oh yeah i am also trying to learn how to drive throughout this mess.) and maybe he'll figure out what the hell is wrong with me. This is awful. Also I'm sorry if i'm not supposed to swear too much i'm just really really frustrated and idk how else to say it

[Heather]

You are 1000% welcome to vent here, and no one here on the team is offended by swearing. Knock yourself out.

I completely understand how frustrated you are by all of this. I also completely understand the difference between being depressed and being sad, frustrated, overwhelmed, angry, resentful, afraid of the future and lost, which all sounds much more like you in this moment to me than depressed does, and all of which is valid for you to be feeling.

It is often so hard to be chronically ill, so hard to be ADHD, so hard to be in a family system where you don't feel understood and where there are inequities (and from the sounds of things, gender inequities which are bad enough, but worse still when the folks being put upon are not only of a gender with less privilege, but who both have chronic illness and/or fatigue). You're right: it *is* awful. I'm so sorry this is how things have been for you and how they are right now. <3

[oliver-kittycat]

Honestly the gender inequities aren’t really bad, my dad helps out a lot when he can but he just has work a lot of the time. I’m more annoyed at my brother, but he’s not really the bad guy here either, since he’s being asked a lot. I do wish he’d step up more but whatever. He does cook a lot and i appreciate it.

But yeah, I mean, it’s really hard. Honestly I kind of think my mom just wants it not to be physical fatigue, because if it’s in my head it’s easier to get past? And I get it, but also, it’s so hard to do anything.

We’re hopefully going to get me a doctor’s appointment tomorrow, and we might get some answers, and we’re also considering counseling so I can talk stuff out with someone. It’d probably help. I guess I just have to wait for now.

I just like … I want it to not be in my head, because if it is, then I did this to myself, and that would be awful. If I know what the cause is, then even if it isn’t curable I could at least grieve properly. It’s weird. Hopefully i get answers soon?

[Heather]

You know, this idea that our heads and our bodies are separate places is a real misnomer. Our heads are part of our bodies, for one, but they also are completely interlocked: neither is separate from the other, and our brains impact the whole rest of our bodies and the rest of our bodies impact our brains.

So, ultimately, nothing can ever *only* be in our heads that is not impacting our bodies in some way and vice-versa. Even if this was about something that was primarily psychological in origin, the idea that psych issues are easier to manage is also a false belief. We can't just change our minds when it comes to things like, say, depression. For some folks, depression is temporary and/or not that hard to manage. For other people, it is something where they try every kind of therapy for decades with limited or even no success.

But you also know you have at least two chronic health issues -- PCOS and ADHD. Both of these impact both brain and the rest of your body, and fatigue is a huge part of the impacts of PCOS. That's not a maybe, it's a for-sure. Plus, for all we know, you have something else going on that isn't either of these things.

I do think that if talk therapy is an option for you, that could be great. As you know from talking here, just having someone to talk to about any or all of this who doesn't take it personally and who is there expressly to be a sounding board and support for you can do a lot. <3

[oliver-kittycat]

Hi again, update. (Side note before we get into this stuff, a few months ago I did talk to my parents and now I’m socially transitioning!!! Nearly everyone calls me Ollie)
So, I did talk to both my doctor and my physiotherapist. My doctor doesn’t know much at all about EDS or anything like that, which he admitted upfront; he said he’d refer me to a rheumatologist though, so hopefully that comes through at some point?
The physio thought I wasn’t bendy enough to have EDS, but she has given me exercises to help strengthen the muscles around my joints to help with the pain, and it is helping with that thankfully — I still get pain but it’s lessened to the point where I haven’t needed the cane in some time.

The fatigue… hasn’t really gone away though. Some days it gets better— I had two days a few weeks ago when I’d just worked out a schedule for my everyday and I felt amazing and full of energy, and I thought maybe it really was a mood thing, but then I suddenly crashed again.

Yesterday, I talked to an occupational therapist, and she did actually say that I might have EDS. I didn’t know if that was true, since I didn’t think I had stretchy skin like the kind described in all the symptom lists, but then my mom said actually my skin is stretchy so I guess I was wrong??
And I have a LOT of comorbidities, like ADHD and very likely autism; I get migraines; I have coeliac disease which apparently is actually also a common comorbidity??? And I don’t think it’s official anywhere but I did hear someone say online that PCOS is also really common in people with EDS, and I have a friend who I’m pretty sure also has both of those.

I just would really like confirmation. I’m so, so tired of being tired. It’s exhausting just to keep up with my really very empty schedule; I’m homeschooled and I only have one class a day, but even that and the really extremely lenient homework that I get feels hard to balance with housework and everything else.
And I’m just so tired of not knowing. I want to know what’s wrong with me so I can go some of the way to fixing it. I’m trying to learn to drive too and it’s so stressful but also I need it because I live in the middle of nowhere and, again, I’m homeschooled so even getting out and doing things and making friends is really difficult.
I have trouble even getting out of bed most days. I find myself halfway to the ladder just sitting there for 10 minutes. It sucks. There isn’t really a point to this, I just wanted to say it I guess

[Latha]

Hi there, Ollie! I'm sorry to hear that you are struggling so much, but I'm glad to see you again! And, congratulations on your transition!

I understand why you would want the confirmation that an actual diagnosis would give you. But whatever that ends up being, the fact is that you are experiencing symptoms that deserve accommodation. I have a question: in an ideal world, what would your schedule look like? What kind of schedule would allow you enough rest, and allow you to take breaks before you get to the point where you absolutely need them? (It is okay if this schedule looks different from that of other people.)

P.S. If you don't hear back about the referral to a rheumatologist soon, it is okay to follow up with your doctor about it.

[oliver-kittycat]

Hi Latha!

So, I'm not really sure. I mean, in an IDEAL ideal world, I'd be able to do whatever I want all the time without any kind of deadline, but that's not realistic at all. Honestly, my schedule is as I said pretty lenient. I might need a more structured one honestly so I'm not aimless. Maybe I need to slow down with studying? But I'd really prefer not to, I'm already entering college when I'll be 19. I don't know.

I'm also kind of scared about that even though it's a few years away. I want to live on my own, but I don't know if I can handle it. I'd probably be living in student accommodation, so with roommates, and I really would like to pull my own weight when I do, but I don't know if I'll be able to given how exhausted I am all the time. Not to mention, my studies would be way more intense than they are now. I guess if I get a diagnosis I can get accommodations.

I'll probably follow up soon about the rheumatologist, it's been several weeks now. My mom says the referral might take some time though.

I guess things will probably be fine, I just really wish I wasn't dealing with this. It's really annoying. And I don't know how long it's going to go on, or if it'll get even worse, and I worry about college and work and everything, and it sucks

[KierC]

Hi, Ollie I hope it’s ok I’m popping in here briefly. <3

I totally hear you about feeling aimless with a less set schedule. When you think about having more of a routine so you feel less aimless, do certain activities come to mind that you might want to have set time for?

I also hear you that you feel you might want to slow down studying but you’re worried about entering college at 19. If it helps at all, it’s really never too late to start and finish school. Particularly if slowing down helps you out in other areas of your life, I say it’s a good thing to do for yourself. You have plenty of time, and I think it’ll be better time anyway if you take things at a pace that feels right for you. How does that sound to you?

It can be really stressful to think about what’s coming up in the future with living with others and having more intense studies ahead. You’re totally right, though, when diagnosed you can certainly seek out the accommodations that would help you! But I appreciate how overwhelming this can feel, thinking about all of the obstacles that might lie ahead. I hope you can remember that you’ve overcome obstacles before, and that if or when you face more, you don’t have to do it alone. I am so sorry that you’re dealing with so much right now. We’re all here for you in whatever way you need, and we all just want you to know that you’re not alone here. <3

[Heather]

Ollie, if you want any more talk from one chronic-fatigue/illness person to another, including about how to live on your own as an adult, I'm around. I'm also someone who started college at 19 (I needed to take a gap year to make some money to pay for some of it with and care for my Dad) if that's something you want to talk about.

[oliver-kittycat]

Hi Kier and Heather!

Kier — I did do a little work today with my mom coming up with a schedule, basically just putting fixed homework slots into place. Hopefully it helps?

As for slowing down, honestly I think it’s not the right move. The material on the test that I’m working towards changes for each year so I’d have to study a bunch of new stuff which isn’t even out yet if I pushed it out another year, and I’m feeling pretty okay today about where I’m at

Thanks so much for your support <3

Heather— it’d be really nice to talk about that stuff, yeah. Do you have any advice with like pacing and studies and stuff? Also about normal life things like eating and chores and things?

Also, I have extremely suddenly gotten a lot of migraines in a row. I knew I get them, my mom gets them, but three weeks in a row now I’ve had a migraine and I literally do not remember when the last time before that was. I don’t know why it’s come on so suddenly. I’d chalk it up to the new higher dose of my ADHD meds I recently got put on, but that doesn’t explain the first one, because that was before I was on them. I’m very confused and a bit alarmed haha

[Heather]

Ugh, I am so sorry about the migraines. As a lifelong migraine sufferer, you have my sympathy. It could be about your meds, but it's also common for migraines to start showing up for people with a uterus at a certain level of estrogen, which commonly happens in the mid to late teens. Good times.

I'd suggest talking to your doctor about it (and I know, one more thing to talk to doctors about when you already have to talk to them more than you'd like always sucks). There are good medications out there for migraines these days, bothy preventatives and meds to take when you feel one coming on that can usually stop them from happening.

In terms of your questions about pacing and life things, another disabled friend of mine once told me that she only gave herself the goal of doing three things each day, and that included things like getting up and eating a decent meal. That might not sound like much, and some days you may be able to do way more than three things. But you prob ably have also had days where even three super basic things feels like a lot, or may not even feel doable, so I think creating that kind of limited expectation of yourself in a given day is actually really helpful. That feeling like you just can't do all the things or like you're failing at even basic things can just be so demoralizing, you know? Plus, as many of us know, the expectations for someone without chronic illness are often way higher than is reasonable or even possible for those of us with it, especially on bad days.

In terms of doing what you can to be on track with eating, chores, and sleep, another friend with disabilities (who also works here) got me started bullet journaling a bunch of years ago and it was life-changing for me. Having something analog instead of digital is easier for me to focus on. Habit tracking is something a lot of people do with their journals, and that might help you out? You can also put these things down as to-do's from day to day so that you can see you need to do them and get the satisfaction of checking them off as you do them. I also find that over time, seeing what I could and could not do in a day when I do things like that can help me better hack my days so I am not setting myself to do more than I am capable of, or doing things in a way that just isn't working for me. For example, if eating 2-3 times a day is a challenge, maybe that's because cooking/preparing that many times a day is the issue, so you might try solving for that by doing advance food prep on days you have more spoons, or by having some frozen meals always at the ready for low-energy days.