On giving up on getting better

[kaberett]

There is a piece of art on display in the British Museum, part of the set-up for which is that the average person living in the UK will get prescribed 14,000 pills over the course of their approximately three-score-years-and-ten.

Currently, I am taking sixteen pills a day: 4 paracetamol; 3 NSAID of some description; 3 hyoscine butylbromide; 1 citalopram; 1 amitriptyline; 1 omeprazole; 1 loratadine; 1 B-vitamin; 1 C-vitamin. The vitamins aren't prescribed (but I'm demonstrably less mad when taking B supplements, and colds are much less debilitating when I'm taking prophylactic vitC); the paracetamol are; and sometimes I'm up at 8 paracetamol, and sometimes I take codeine, and sometimes I take diazepam or temazepam, and sometimes I'm on a citalopram dosage that requires me to take 2 tablets instead of one; so let's say that 15 is a nice round approximate number. This has pretty much been my regular meds regime since mid-2012.

That's 5475 pills a year. Approximately. Which gets me up to 14,000 in a little over two and a half years; or, to put it another way, since getting settled with this med regime in summer 2012 I've taken as many tablets as most people in the UK do in their entire lives.

Remove any of them - except, maybe, the vitC - and my function decreases measurably within days.

Damn right I have given up on getting better.

The pain clinic talks about how important it is to build up stamina with regular exercise at 80% of what I know I can do. But I can't, I cannot always do that. My conditions are too variable. Some days I can pass for normal and healthy unless you eat a meal with me, and watch me neck my handful of meds. (Omeprazole, vitB, NSAID, paracetamol, hyoscine with breakfast; vitC, NSAID, paracetamol, hyoscine with lunch; NSAID, paracetamol, hyoscine with dinner; paracetamol, amitriptyline, citalopram, loratadine as I'm getting to bed.) Some days I sleep 18 hours, and that is if I don't do anything more strenuous than lie still and maybe get to the toilet twice.

Some days the damage the endometriosis is doing to the nerves in my hips and legs is such that trying to put weight on them feels like I am walking on knives. My entire sensory experience is dominated by the flares of pain along my sciatic and genitofemoral nerves. Some days it feels like I've a line of liquid fire inside my leg from hip to ankle. Some days I swallow screams every time I go to the toilet, with my head down and my arms braced either side of me on the walls or bars to hold me upright.

This is my grief. It is my grief that every time I'm exposed to cigarette smoke I'm a step closer to being unable to leave the house. It is my grief that no physio I've ever tried has done anything but damage my joints further. It is my grief that I will in all probability never walk the Tongariro Crossing again, nor the Panoramaweg near the Grossglockner, nor ever make it to the top of the Hangerer in Tirol.

Most of you have no idea what it has cost me to give up on the idea of getting better. Most of you have no idea how much it cost me to cling to that hope.

I will not love myself conditionally. I will love myself in the present tense. I will balance on my quicksand foundations and I have given up and in that there is despair, but more importantly there is strength. I will do what I can, when I can, with what I have; and I will recognise that my conditions are incurable and progressive. I will not live a half-life praying that it gets better, because it won't, and unless you are working on understanding mechanisms and potential cures I am not interested in having you tell me I should have faith.

You have no right to judge me, and I will not - ever - be your inspiration.

Comments

[swaldman]

Thank you for this post - I think it helps me to understand, or at least appreciate, a little more.

[kaberett]

yw.

[alexseanchai]

The last two paragraphs read like a poem, and like all your poems it is lovely.

except for what I assume is a typo: 'parying'.

[kaberett]

fix'd; thank you. xx

[syntaxofthings]

To me, giving up is accepting our body's limits and boundaries, and in that having the freedom to do what we can: instead of the worry and guilt of ever "getting better", making sure that the right now is as comfortable and happy as we can make it and accepting and loving our bodies as they are.

Thank you for this. ♥

[kaberett]

Yes. Precisely.

I just - I am having an evening of feeling furious about all of the things I've been told I do as if they're bad, and I'm trying to write an essay about my wheelchair as a tool rather than a tragedy, and... I had a whole bunch of feels that needed out somewhere.

[silverhare]

I hear you.

[kaberett]

Thank you.

[redbird]

Thank you for explaining this. I know you won't be our inspiration, but how do you feel about people quoting this, or parts of it, to use as a teaching example?

[kaberett]

As ever, per my permanent wishlist, that is welcome. <3 Thank you for asking.

[jelazakazone]

Ok, part of me understands the "won't be your inspiration" but you are an inspiration to me -- in your love of geology and chemistry and use of words and smashing all kinds of boundaries and thinking out loud.

Also, I am astounded that you take so many pills. I had no idea. I mean, I knew you took meds, but I didn't know what the numbers were. I am glad they make a difference to you. <3

[kaberett]

♥. There is a difference between the concrete of my passion for whatever and my ~continued existence~ in terms of my being comfortable being treated as a role model, you know? And it's the "role model"/"something to aspire to" that feels importantly different to me than Vague Inspiration, but this is something I'm going to have to think through and write up!

[khronos_keeper]

This whole post has really made me evaluate how I've been taught to look at the social labels of medication and sickness. Really, it has, and I'll be thinking for a while about social viewpoints of illness, disability, and visibility in public places between different cultures.

And to be entirely serious, I'd like to state outright that you're the person who has really made me start examining myself and my identity as incorporating of my own medical issues. My capabilities and value, and how these things can yes change, but don't automatically devalue me, and just...

Thank you. Thank you for always being honest with yourself, and encouraging others to be honest with themselves.

I think before we've managed to sort of connect through our grief for the loss of the image of ourselves as physically competent and intact. And I think I'm coming to the point where I'm not just recognizing my issues, but also embracing themselves as a unique experience I am having, that shapes my life and gives a different (sometimes terrifying, sometimes dangerous) perspective that many others would have a hard time accessing.

Anyway, boiled down-- thank you. Thank you for always always speaking out. You make things so much better with your words.

[kaberett]

I am delighted to help and delighted to make space for you.

I seriously seriously recommend Susan Sonntag's essay Illness as Metaphor in terms of thinking about this.

I think I need to think more about the differences I perceive between "getting to be of solid concrete use" and "being an inspiration", because I think it's tied in to the way I think about muses.

Much affection for you. Good luck with all of this stuff. I've been reading, and it sounds hard, and I want to help as much as I can.

[cosmolinguist]

...oh, it's been a little while since I had one of those "I can't say a fraction of what I wish I could about this, so I'll have to just stick with thank you (and possibly some expression of affection if it's welcome)" moments; I see it's time for another!

[kaberett]

♥. Affection welcome.

[jesse_the_k]

Ah. I have been on that margin between pushing too hard and acceptance. I read you as finding a safe place to park between the extremes. Congratulations!

[kaberett]

Aye. I... have mostly found my balance.

[tim]

Heh, it wouldn't have occurred to me that 16 pills is a lot. I take 21 1/2 pills a day. (Of those, only 7 1/2 are prescription, but all of them are things I've been told to take by a doctor.)

[kaberett]

Heh. This really is a lot from the perspective of most people...

[shehasathree]

The pain clinic needs to go fuck itself.
<333

[kaberett]

PREEEEEEEEEETTY MUCH

(this is the pain clinic that discharged me for being TOO ILL TO ATTEND APPOINTMENTS)

[davidgillon]

This!

If there's one phrase I hate almost as much as 'genuine disability', and I loathe that piece of disablist hate with a burning passion, then it's 'giving up', as applied to us, by others, in their ignorance.

It isn't giving up to use a wheelchair, no more than it's giving up to take a painkiller, or to spend the day in bed when you recognise the alternative is to make yourself even worse. Choosing the smart answer isn't 'giving up', it's surviving, it's turning being an expert patient into reality. There is loss, I won't deny that, can't deny that, but recognizing that loss isn't giving up, it's moving on, picking new challenges. You say 'giving up', I say embracing disability as my reality, and we mean the same, others say 'giving up', and they mean something different, something that demeans us, that pictures us as lesser for managing our disability to allow ourselves optimum function.

We're expressing ourselves almost as opposites, yet I'm pretty certain we're saying exactly the same thing, and so few people will hear us.

[kaberett]

Yeah, it's very much angry, spiky reclaiming of "giving up", heh. Like, you want to tell me I've given up? Yes, fine, I have given up; now you have to listen to what that means.

[davidgillon]

Separate reply for this bit, because it's about pain clinics, not reality ;p

I know exactly where your pain clinic is trying to go with pacing, because mine says exactly the same thing. And the bugger of it is they're right to a degree, I do feel better for having a daily exercise thing, and friends tell me they can see the difference in how I move. But even my clinic recognises that come flare-up time, that exercise is going to go out the window - they actually did a specific session on the fact your routine was going to get screwed by flares and you would need to rebuild afterwards. But where most of them, including mine, clearly including yours, seem to come adrift is in dealing with disability that doesn't just feature random flares, but features multiple disabilities varying on their own random cycles, throwing flares at you from different causes at different frequencies of randomness, and doing it, in toto, so often that there just isn't the space to build a daily routine, never mind build up on top of it.

They should be better at it, because so many of us do have multiple varying conditions, but they aren't, and that's their failure, not ours.

[kaberett]

*snort* Yeah. Like, so much of their advice was just... obviously inapplicable (and if it wasn't I was already doing it). So when they discharged me for being too ill to attend appointments I gave up and didn't try getting referred back, and I haven't bothered in London either...

[syderia]

Thank you for this post.

[kaberett]

yw.

[chiasmata]

Beautifully written. All of the ♥'s

[kaberett]

Thank you. <3

[azurelunatic]

*places interesting rock*

[kaberett]

♥

[rmc28]

I love how clearly you write about this, how well you express your frustration with people's unthinking unhelpfulness.

Thank you.

[kaberett]

Thank you; you're welcome.

[sfred]

Yes. Yes, Yes. Yes.
Thank you for writing.

[kaberett]

You're welcome. <3

[inoru_no_hoshi]

♥♥

I am reminded of how I've accepted that short of medical breakthroughs, my hearing is mostly gone and slowly fading further, and thus have "given up" on "cures", and how I get sympathy/pity when I explain that, really, the only thing I'll really miss is music - and even 100% deaf people can still experience that with the right set up, so. I mean, yes, things I won't be able to do - or do the same way as a hearing person, which is already true and has been since I was wee - but I am (nominally) a Capable Person and can (mostly) handle myself.

So many able-bodied people read "giving up on [thing that is unlikely to happen re: your disabilit(y)(ies)]" as "giving up [in general]" when it is so much more about accepting and working with limitations as and when necessary. I'm glad you've hit that point, as much as there are no doubt conflicted feels on some levels. ♥

(And I think you know how much I find "inspiration" as often applied to disabled people an utterly gross and demeaning thing so I shan't hash that over yet again. xD)

TL;DR you're awesome and I <333 you. Keeping rocking on with your fab self. <3

[kaberett]

*nod* Thank you for saying al of these things. (Also hahahahaha "cures" is an anagram of "curse" js.) Affection. ♥

Well this resonated

[untonuggan]

I saw that exhibit a few years ago when I was in London. I just started crying when I saw the rows and rows of pills.

I (currently) take 18 pills a day, if I'm not having some sort of flare, in which case gods know because I have an arsenal of PRN medications I can throw on top of that (not to mention patches and creams) in the hopes of not having multiple couch days/hospitalization/shelling out money for a massage so I can actually move without screaming.

It has been a similar-ish number since before I could legally vote or buy porn.

If I do not take those pills, bad things happen. I don't like taking them, and I especially don't like all the bloodwork for the Lithium and the risk of what it might be doing to vital organs like my kidneys. But, you know, immediate death or potential later death, that is the question right?

Every holiday when I ask my parents what they want as a present (because I'd really rather they got something they want than me shell out money for something everyone pretends is great for some social obligation, and my dad is impossible to shop for), their response is something along the lines of, "We just want you to feel better. That would be the best present of all."

Which, I think my brain has always interpreted as "be cured," and there is a certain amount of pressure there because I think my parents had felt for a certain amount of time that I would somehow be able to work at some point. Which I really do not think is going to happen when I just cannot predict when I will be well, and bosses tend to like it when you can tell them that you are coming to work and then do so.

So yeah. I've done more treatments than I probably would have otherwise out of "please other people and become a good little Capitalist worker" syndrome. Because society and doctors and everyone are all YOU CAN DO IT. (be our inspiration!)

And in the face of all that pressure, it is really hard to just be like, NOPE NOPE NOPE.

Fortuately for me, I have friends and a partner and a cat who are all very encouraging of me chilling the fuck out.

Anyway, thank you for posting this. <3

Re: Well this resonated

[kaberett]

ikr? It is one I always visit and spend some time with in the BM because it... yeah.

IKWYM about people wanting us to "be cured" :-( HURRAH for your friends and partner and cat, you're very welcome, and yeah I just... I think people don't get how much the healthwork takes out of us, that "okay, try this med for a month" is very likely to mean "have six weeks of not getting anything else done", and so on. I just... I just lose so much time to experimenting with medication that I'm astonished I still have a job, basically.

<3

[worlds_of_smoke]

-sighs- Yeah. Giving into your limitations is not giving up in the way that most people think. Accepting that we are not going to get better is the healthy thing to do, because it gives us the ability to focus our limited energy on figuring out how to do what we can do.

I did the math and I take 15,330 pills a year. And that's not going to ever go down to "normal" levels. I could conceivably drop all of the pills that are supplements, which would drop me to 11,680. But doing that could make my health worse over the long term. I laugh when people go "You need to go off the drugs! They're making everything worse!" because... They've never been in my body. They don't understand what it's like when I miss a dose of my meds. Hell, they don't know what it's like when I don't miss a dose of meds. It's such a naive point of view and I long for the days when I had that privilege.

[kaberett]

Yeah. Quite. I loathe and resent taking meds - really, I do, I'm hideously noncompliant a lot of the time - but the alternative is worse.

[pretty_panther]

This.♥

[kaberett]

<3

[glass_icarus]

♥

[kaberett]

♥!

[(Anonymous)]

I lived in the US for a while, when I arrived back in the UK 3 years ago my doctor was entirely unimpressed with the 10ish prescriptions I was regularly taking. A couple were easy to drop as I was ready to come of antidepressants. Roll on three years and I've had another bout of depression, so that added pills to the list plus two or three other things, such that my set of repeat prescriptions I think contains 11 different things.

I don't know if I've given up on getting better, I don't know if I should, I do know there is scope for having more function, but some of that would involve spending money I don't have. I bought my own manual wheelchair a few months ago and it's given me a lot more freedom compared to attempting to borrow one at a destination and yet somehow I still don't readily identify as being disabled when I quite clearly am.

[kaberett]

*nod* -- I am lucky that when I see GPs I can say "no, my current meds regime was okayed by my gynae consultant and the pain clinic back in Cambridge", which makes them think twice about trying to get me to cut back.

Good luck with getting somewhere comfortable with this.

[elialshadowpine]

*standing, well, sitting ovation*

I feel this, and it is my life, too. The second to last paragraph -- yes yes yes yes yes. It is something I have been coming to terms with for the last decade, ever since I was diagnosed with fibromyalgia at 19 and continue to have racked up diagnoses. I lost hope of getting better a very, very long time ago, and my struggle has been how to deal with that and adapt my life to it. The mental health issues have in some ways been more debilitating, because that is what has affected my writing the most, which is something that I at one point was making good progress and starting to make some money with (enough to mostly, with a bit of the college money that was leftover after buying a car, build myself a computer that lasted me about seven years until I got a new one, as to give you an idea of what I built).

I'm not very expressive about it, and for some things, I will push more than I should to appear "normal." I shouldn't do it, but I do. >_<