The Double Paradox

Today was one of those days that every true “spoonie” has at least once in his or her time being “ill;” the desire just never to swallow another damn pill, never do or get another damn injection or infusion, never go near a hospital for medical treatment … basically just suck it up for a few weeks, hope not to die from the withdrawals, and just go cold turkey off ALL THE MEDS. I know it probably sounds so ridiculous to people who aren’t in our position, but I know from the people I have met online with chronic illnesses of all kinds to people I know in person and people I have just met “in passing” while in the hospital – this desire just to stop taking everything is really a very common one. I guess it seems unusual because to the “average, healthy” person, having to take even a few pills a day is something one only perceives as pertaining to the elderly. Not true. I am WAY down on the number of pills I have to take and I’m still taking somewhere in the neighborhood of 25-30 a day before you throw in the very necessary vitamins and supplements …. add in the nasal sprays and other miscellaneous formulations of medications as well as the weekly sub=cutaneous injection PLUS the 3ish-hr-long immunoglobulin infusion I have to do every week and the picture becomes a little clearer … just the TIME it takes every day not only to swallow pills and administer said shots / infusions but to take sublingual formulations, to go to the lengths of dental care that I absolutely must meet in order just to KEEP my teeth and I think it becomes pretty easy for anyone to see that NEEDING to take so much medication is cumbersome at best.

But still, there are times we hit those “walls” where we have just HAD IT. Like, “I know the withdrawal from meds x, y, and z could and likely would kill me, but I am just SO OVER IT!” We think about the IMMEDIATE pain and then about how IF WE COULD GET PAST THAT WITHDRAWAL ALIVE, HOW MUCH BETTER OUR LIVES WOULD BE WITHOUT ALL THE MEDS, WITHOUT ALL THEIR AWFUL SIDE EFFECTS (the osteoporosis, the rotting and dying teeth, the broken vertebrae, the water retention, the ruined skin, I could go on and on and on with MUCH scarier side effects, sadly). But we have to remember we are on these meds for a reason – TO STAY ALIVE. I have found there is an interesting paradox that exists with people who are so sick they need the meds to stay alive (people like me, at least for now) and people who don’t really need the meds to stay alive – that is, those of us who REALLY need the meds just don’t want them, and often those who don’t REALLY NEED THEM (that is, they would not die or go blind or lose limbs or throw clots, &c, without their “meds”) don’t seem to have such infuriating reactions to having to take anything and everything they take. The “double paradox” is just in that those of us who REALLY NEED THE MEDS (I suppose I could clarify that by saying those of us who need them for more than “comfort” – which is not something I mean to discredit, I just mean there is a definitive difference between needing meds to be alive and needing meds to be comfortable) want off of them so badly sometimes that we forget how bad things are without them. I think it’s an interesting “twist” of human psychology that we tend to forget the bad and remember the good – thanks much, Urasawa Naoki for brining that one to my attention (and if you do not follow me on other social media, please not only do so but PLEASE do yourself and humanity a favor and watch Urasawa Naoki’s “Monster” IN JAPANESE). But it’s true – we tend to forget how insanely painful a GI bleed is or how terrifying it is suddenly not to be able to see or how the bruises hurt 10x more when they are from the security staff at the ER throwing you off the floor onto a gurney because you passed out on the floor in pain. We don’t forget the severity of our diseases – too frequently we hear of others who have passed away from these illnesses – but we don’t remember the SHARPNESS or the acuity of the actual episodes themselves. They are painful memories and we can remember them as intensely negative, but the prospect of not having those kinds of terrible side effects (for example, today I had to do my sub-q shot and I had chest pains, an INTENSE headache and sharp eye pains, and CRAZY panic attacks – and those are all fairly benign, as I mentioned above) and just NOT BEING BURDENED WITH HAVING SO MANY MEDICATIONS is something that looks like a shining white light of absolute hope when the days of taking so many meds turn into months and years and decades.

I don’t really have too much to say about this one other than it is something I certainly experience and that it is something I know many others also experience; it is also something I know often “differentiates” those with “mild” conditions from those with more “severe” illness or at least conditions that have lasted a LONG time (this “refractory” term being bandied about these days….). It also seems (self-evident) that this is something that definitively differentiates those who genuinely want to be well from those who use their illness as a crutch or self-victimize or perhaps even for those who engage in drug-seeking behavior. At any rate, it is just an interesting “event” I have noted happens in my life at fairly regular intervals – I just get FED UP WITH IT ALL. I KNOW I can’t just stop taking my meds (both short-term and long-term), but the prospect of having a “LIFE” again is just … almost too much even to think about.

At any rate! I hope you are all having a happy and healthy day wherever you are in the world and my apologies for that kind of downer of a post! I would always love to hear from anyone with whom these posts resonate – so please feel free to post your experiences / feelings or send me an e-mail if you do not want to discuss these matters publicly. And REMEMBER, my heart is ALWAYS ALWAYS ALWAYS with YOU….

❤ Always, Beth


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