how i am not coping with chronic pain

 I was going to say that I haven't been coping well with my chronic pain lately, but that's not exactly true. "Lately" is more or less a year at this point and "coping well" is always relative. Maybe I have never coped well, but the last year has been the hardest since I first got ill and has actually led me to seek more permanent (medical) help for the first time in quite a while. Because although I have seen various people over the past decade and a bit it's often only been a quick check up or revision/refill of prescriptions. And it actually took a semi-casual remark of "what? you're in pain all the time every day - that's not right" from a friend for me to figure out that no, it is not right, I shouldn't have to live this way and I actually deserve to be fully examined and treated (again). Shockingly, I deserve more than the bare minimum in this area of my life, too.

I began to feel a tiny bit hopeful, but it hasn't been all that, to be honest. Even when you get appointments it is a struggle to get the help I know I should be getting. All I am really asking for is a clearer diagnosis, some relief to my pain, just something to make my life more manageable than it is currently. Because, currently I am not dealing well with anything. So here's some thoughts and experiences I've been having when faced with new medications, appointments and other health-related issues this month.

Recently I (reluctantly) told my doctor I don't always take my pain medication and she of course asked me why. I know she didn't do that to minimise or trivialise my pain or to be annoying even though that is what it felt like. (And this post isn't to moan about this or any particular doctor or person - just fyi! Although, I definitely could do that, too..) That is what most questions come across as - especially when you're having to retell your story to different people and doctors continuously. And at the time I didn't really have a "reasonable" answer ready. But here's the thing: it's expensive. I am currently on the cheapest meds I've ever had and even of them I take the cheaper off-brand version. What once would've been the dose for six months for me, I would now need in less than a month. That's a lot. That's a lot of money to spend (hundreds or thousands, honestly), and that's a lot of chemicals and shite to consume. And that is not hundreds I want to spend and unnatural things for me to eat - that probably aren't good for me in the long run - on something that might work. Might. Because sometimes they work, sometimes they don't. Maybe I'd feel differently if this was something that 100% worked every time, made me feel better for a considerable amount of time. But it doesn't. So when at the start of the month I was struggling money- and health-wise and figuring out which one of my pills I'd be able to buy if any, thinking about 'why I don't always take my meds' just felt hurtful. And even though I left the appointment with some kind of a plan as to what was going to happen next which was great, ultimately I left feeling worse than going in.

It is such a privilege to be able to get help and to be able to medicate my symptoms and most of the time I do have that privilege. But it is a privilege. Questioning whether or not I am doing the utmost to be well all the time (by following the doctor's orders or otherwise) isn't taking that privilege away, but it is very diminishing. I am doing my best like most people are. I am in pain all the time and mostly have to put my energy into making others believe my pain and to take it seriously. I understand not taking my meds might make it look like I am not really unwell or I am not trying to get better. But believe me, I am, yet I cannot and will not always take them. They don't always work, they are expensive, they make me feel and be less like myself. I will listen to doctors, but I am not about to blindly follow anyone's opinions and I want it also to be acknowledged that sometimes the patient knows themselves, their body and their condition best. I will not, however, listen to anyone with their condescending comments, anyone trying to put the blame on me or trying to make me feel embarrassed or bad about myself in any way. (Chronically) ill people already deal with a lot and somehow society is always trying to put more on their plate. More expenses, more shame, more blame. More 'stop complaining', more 'it could be worse'. More of trying to make one feel as much of an inconvenience and drain as possible, more of trying to make one be as invisible and cast out as possible. And honestly, nobody is here for all that. I am here to take up the space I need and can (and I am here to take my meds and other treatment when I can and want to on my own terms*). My illness may be invisible, but I am not.

(*Maybe not applicable to everyone - generally speaking I am in favour of taking the meds you are prescribed to survive! Although, it is always bs to have to pay an obscene amount for something just to stay healthy/alive. Especially when being ill etc. is generally not a choice or an option for anyone, it's just being doubly unlucky.)

Even more recently, I got some mail from the hospital. "Prognosis not good. No possibility of a cure, main object making life tolerable." I suppose I have known all of that for a very long time, but actually reading the words makes me want to cry. Made me cry. And still makes me want to cry some more. I don't want my life to be tolerable. I'd much rather enjoy life, basically I'd much rather most other verbs than tolerate. When you envision your life and your future at any stage, 'tolerable' isn't something that is at the top of the list of things to describe what you want. That being the only thing to look forward to in life just seems so hopeless and pointless.

I know it isn't all hopeless and pointless, and even if my life will only ever be tolerable that doesn't exclude other better and happier things and feelings. I know that, but I am not feeling it right now. Even the near future isn't supposedly all hopeless since I just received a list of new medications and other treatments I am supposed to be starting on a trial basis. And I mean a list; it should cover the next year or so. So it isn't as if my doctors are doing nothing for me. It just isn't what I was hoping for and expecting. Since the end of summer I've been trying to get an appointment for a specialist and this has now been denied. Someone who I've never met and who's never met me is now giving instructions to my doctor(s) who is/are nice; but I don't need nice, I need someone who will understand more about what is going on with me without having to check everything from a database and someone who will listen to me. Because despite seeing a number of doctors in the space of a couple of months - most of whom have been nice and probably good enough in their job - I continue to feel like I am not being listened to and not taken seriously. This on top of the physical and mental pain and exhaustion is just too much for me to cope with. Getting a list is something and a step into some kind of a direction. And I probably will be trying out most if not all of this new stuff. But it isn't what I was hoping for and expecting. It does feel a bit like throwing a bunch of solutions at a problem you aren't quite too sure of and hoping for the best.

Most of the time when I write or talk about my situation I try to have a positive spin on it, try to not make a big deal out of it, and have a it-is-what-it-is-attitude. And maybe that is a tiny part of the problem, too. (Not putting the blame on myself, but taking some responsibility nonetheless.) From a young age my mum always told me to, not lie, but exaggerate symptoms when seeing a doctor - even if it was just something common like a flu - to make sure you got the attention and help you needed. With more common things like the flu I definitely do this, but somehow I find it hard when it comes to my everyday life and chronic illness and pain. It is so much easier to say 'oh, this sore throat is absolutely killing me, I can hardly swallow or speak' than to admit to yourself and others that 'oh, this chronic pain is absolutely killing me, I can hardly get out of bed'. The latter is so much more permanent. And although 'it is what it is' is true, it's much more helpful to actually let others (especially a doctor!) know that 'it' means your condition is severely affecting every aspect of the quality of your life.

It absolutely helps to have a positive attitude, but that is not the reality of every day. Currently, I am feeling like absolute trash. It feels like that is the kind of self-deprecating thing everyone - myself included - says nowadays, somewhat tongue-in-cheek. And sometimes I mean it that way, but I also want to be able to say it in a way that I truly mean and truly feel. Because that is okay, and valid, and (hopefully) temporary. I try to be positive, but, really, lately when I think about my life, how I am physically and emotionally feeling, and everything I am dealing with, it makes me (want to) cry. All in all, I am not coping well and, honestly, it felt like a relief to answer 'how are you' with a 'not good' today. I am not doing well, I have not been doing well for a while, I might not be doing well for a while longer. That's fine. And if you're not coping right now either - hang in there.