More volunteering! ...and a rant.
Today I started at half nine, and while I was down for a morning shift (finishes at one) I stayed until almost two so that another volunteer could stay in the back and steam things before the other afternoon person turned up. (From what I've seen so far, she really dislikes watching the shop, but keeps having to do it anyway because, well, it's kinda the default thing for non-managers to do when working in a shop.) I had some bits out of my last graze box around twelve (I'm giving them up/having them less frequently because expense plus extra moral support in sorting out other things to have), so I wasn't *too* hungry by the end, but I was very very glad to find Dave cooking lunch when I walked into my house.
The rest of today has been quite lazy, as I was quite worn out after all that Doing Things, and I do need to conserve the week's spoons a bit better (having more reserve spoons means a faster spoon-refresh-rate - I'm not entirely sure how the 'spend spoons to gain more spoons' process works, just that it's more effective the more spoons you have). This afternoon contained much drinking of tea and being curled up on the sofa finding amusement in the sound-effects produced by linguists writing essays. ('wh' can be pronounced in several different ways, and the symbol you represent it with can change the focus of your analysis a lot, apparently!)
I meant to get some sewing (or at least hemming) done, or find the fabric that I need to finish this robe (it's *somewhere* in the house, or possibly someone else's house), but I haven't really gotten up except for Designated Do Some Effing Housework Time. (I was still feeling knackered, but part of the purpose of this 'volunteering' gig is to gauge my limits and how well I'm actually coping while *feeling* better, and I won't learn that if I beg off of housework. So, I set the kettle boiling, and announced to Dave that I wasn't allowed to leave the kitchen until I'd drank my tea, and that I should spend the time that I was in the kitchen Being Useful. So, now the laundry is hung up to dry, and also I did some washing up and peeled some mushrooms.)
I seriously am feeling a lot better these days. I don't know if it's that my health is actually being managed properly now and that my medicine is at an effective dosage, cutting down on existential angst by having a relationship that makes me feel secure and saying 'screw it' to the idea that I need to justify my presence on the planet, or a combination, but-
I am angry about how I was treated by the University Health system. I've been sick for four years, starting with crippling gut pain and fits of dispair, moving on to a full-on breakdown, dizzy spells, severe fatigue and inexplicable pains, and ending up with long-term fatigue, depression, and anxiety. It took at least a year to get any treatment at all, just because my bloodwork looked normal, and I only got that because another doctor took a look and thought that my iron looked like it was on the low side. It took a while to get the pain in my abdomin that kept making me black out taken seriously even by her, and that partly because I was loosing a lot of weight and my iron wasn't going up - before that, I'd just get sent for an STD test, because clearly laydeez' pains only happen in their heads uteruses. Now I'm on a medicine for that, so that my digestive system actually takes the time to work out whether something is food before it freaks out, and having stopped eating wheat, I don't get the stabby-pain (very often) any more. I'm back to a healthy amount of padding over my bones, and I haven't had to be on iron suppliments for a good while now.
Once those things were sorted, and I was on a very low dose of antidepressant to stop me from having panic-attacks so often, I thought that that was all the help I could expect. Sure, I was still pretty fatigued most of the time, I was still experiencing intrusive, unwelcome, destructive thoughts most of the time (and having to spend a lot of my available energy deflecting them) and having to manage myself extremely carefully to avoid another Epic Spiral Of Darkness, but hey, I wasn't in a lot of physical pain and wasn't actively dying, so I reckoned I had it pretty good.
But, in October 2012, I started feeling it. That sucking dark pull on the mind that means that you're heading into another severe downswing. I told my doctor at the time what I was feeling and what I thought it meant, having experienced it multiple times before, and that I didn't know exactly what I would need, but I would need to do *something* if I didn't want to lose *another* year to whatever rubbish illness this was. He said to wait and see, and told me to make another appointment for a month's time. Feeling sick and fairly hopeless, I reluctantly agreed.
That was pretty much the final nail in the coffin of my degree. By the time next month rolled around, I was a foggy mess that was just about dragging myself to the things I definitely needed to attend to stay alive - and that wasn't my course. It was spending time with my friends and partners, having reminders all around me that staying present and alive and part of my community was real and important and wanted. Another couple of weeks, and someone who cared about me became afraid enough for me that he walked me back to the practice and made an emergency appointment for me, because I was too fogged up and frazzled to do it myself. And then he helped me explain to the new doctor what I was going through, and this doctor listened, and asked questions, and made changes to my treatment until the fog and cloud lifted, and not only did the more serious problems associated with having a major episode receed, the constant, low-level drain faded back, too. Suddenly, I was a lot more capable, not having to fight off intrusive thoughts all the time, and realised how spiritually wilted I'd gotten while I'd been ill and tired all the time.
It shouldn't have gotten to that point. I was being monitored, being seen once a month and asked questions and sent on my way with the same perscription because everything was 'pretty much the same, tired all the time, skin-picking, yeah'. I'd forgotten what it was like to *not* have constant low-level depression running alongside everything else about life, and so I didn't have the words or experience to describe my symptoms because I didn't have a 'normal' baseline to separate them from - I would descibe my capabilities, knowing that I should be able to do more and hoping that the doctor would be able to identify the problem, hoping he'd do something other than shrug when I asked what was wrong with me, but that never happened. My bloodwork was normal, after all.
Now I have something to draw on when talking about how I feel. It's been amazing - so much of that energy suck is just *gone*. I'm still counting spoons, but if I over-extend myself (as we all do, occaisionally), I recover rather that spiralling. I'm volunteering for a charity. I'm making plans for the future, and making decisions that will define my life, because suddenly, I can - there isn't a mire of brain-yuck oozing over my feelings and thoughts and desires weighing them down and making them look unachievable. I don't feel like I have to justify my existance before I can start living my life the way I want to. I didn't even realise that I had felt that way until I didn't any more.
I learned and experienced a lot over the last five years due to being sick. I'm still angry that I had to. And it's a new feeling, to feel justified in being angry about an injustice done to me, rather than just afraid and resigned to it happening over and over again. But. I don't deserve to put up with bad treatment from the system. I don't deserve to put up with bad treatment from the system.
I don't deserve to put up with bad treatment from the system.
And neither do you.
The rest of today has been quite lazy, as I was quite worn out after all that Doing Things, and I do need to conserve the week's spoons a bit better (having more reserve spoons means a faster spoon-refresh-rate - I'm not entirely sure how the 'spend spoons to gain more spoons' process works, just that it's more effective the more spoons you have). This afternoon contained much drinking of tea and being curled up on the sofa finding amusement in the sound-effects produced by linguists writing essays. ('wh' can be pronounced in several different ways, and the symbol you represent it with can change the focus of your analysis a lot, apparently!)
I meant to get some sewing (or at least hemming) done, or find the fabric that I need to finish this robe (it's *somewhere* in the house, or possibly someone else's house), but I haven't really gotten up except for Designated Do Some Effing Housework Time. (I was still feeling knackered, but part of the purpose of this 'volunteering' gig is to gauge my limits and how well I'm actually coping while *feeling* better, and I won't learn that if I beg off of housework. So, I set the kettle boiling, and announced to Dave that I wasn't allowed to leave the kitchen until I'd drank my tea, and that I should spend the time that I was in the kitchen Being Useful. So, now the laundry is hung up to dry, and also I did some washing up and peeled some mushrooms.)
I seriously am feeling a lot better these days. I don't know if it's that my health is actually being managed properly now and that my medicine is at an effective dosage, cutting down on existential angst by having a relationship that makes me feel secure and saying 'screw it' to the idea that I need to justify my presence on the planet, or a combination, but-
I am angry about how I was treated by the University Health system. I've been sick for four years, starting with crippling gut pain and fits of dispair, moving on to a full-on breakdown, dizzy spells, severe fatigue and inexplicable pains, and ending up with long-term fatigue, depression, and anxiety. It took at least a year to get any treatment at all, just because my bloodwork looked normal, and I only got that because another doctor took a look and thought that my iron looked like it was on the low side. It took a while to get the pain in my abdomin that kept making me black out taken seriously even by her, and that partly because I was loosing a lot of weight and my iron wasn't going up - before that, I'd just get sent for an STD test, because clearly laydeez' pains only happen in their heads uteruses. Now I'm on a medicine for that, so that my digestive system actually takes the time to work out whether something is food before it freaks out, and having stopped eating wheat, I don't get the stabby-pain (very often) any more. I'm back to a healthy amount of padding over my bones, and I haven't had to be on iron suppliments for a good while now.
Once those things were sorted, and I was on a very low dose of antidepressant to stop me from having panic-attacks so often, I thought that that was all the help I could expect. Sure, I was still pretty fatigued most of the time, I was still experiencing intrusive, unwelcome, destructive thoughts most of the time (and having to spend a lot of my available energy deflecting them) and having to manage myself extremely carefully to avoid another Epic Spiral Of Darkness, but hey, I wasn't in a lot of physical pain and wasn't actively dying, so I reckoned I had it pretty good.
But, in October 2012, I started feeling it. That sucking dark pull on the mind that means that you're heading into another severe downswing. I told my doctor at the time what I was feeling and what I thought it meant, having experienced it multiple times before, and that I didn't know exactly what I would need, but I would need to do *something* if I didn't want to lose *another* year to whatever rubbish illness this was. He said to wait and see, and told me to make another appointment for a month's time. Feeling sick and fairly hopeless, I reluctantly agreed.
That was pretty much the final nail in the coffin of my degree. By the time next month rolled around, I was a foggy mess that was just about dragging myself to the things I definitely needed to attend to stay alive - and that wasn't my course. It was spending time with my friends and partners, having reminders all around me that staying present and alive and part of my community was real and important and wanted. Another couple of weeks, and someone who cared about me became afraid enough for me that he walked me back to the practice and made an emergency appointment for me, because I was too fogged up and frazzled to do it myself. And then he helped me explain to the new doctor what I was going through, and this doctor listened, and asked questions, and made changes to my treatment until the fog and cloud lifted, and not only did the more serious problems associated with having a major episode receed, the constant, low-level drain faded back, too. Suddenly, I was a lot more capable, not having to fight off intrusive thoughts all the time, and realised how spiritually wilted I'd gotten while I'd been ill and tired all the time.
It shouldn't have gotten to that point. I was being monitored, being seen once a month and asked questions and sent on my way with the same perscription because everything was 'pretty much the same, tired all the time, skin-picking, yeah'. I'd forgotten what it was like to *not* have constant low-level depression running alongside everything else about life, and so I didn't have the words or experience to describe my symptoms because I didn't have a 'normal' baseline to separate them from - I would descibe my capabilities, knowing that I should be able to do more and hoping that the doctor would be able to identify the problem, hoping he'd do something other than shrug when I asked what was wrong with me, but that never happened. My bloodwork was normal, after all.
Now I have something to draw on when talking about how I feel. It's been amazing - so much of that energy suck is just *gone*. I'm still counting spoons, but if I over-extend myself (as we all do, occaisionally), I recover rather that spiralling. I'm volunteering for a charity. I'm making plans for the future, and making decisions that will define my life, because suddenly, I can - there isn't a mire of brain-yuck oozing over my feelings and thoughts and desires weighing them down and making them look unachievable. I don't feel like I have to justify my existance before I can start living my life the way I want to. I didn't even realise that I had felt that way until I didn't any more.
I learned and experienced a lot over the last five years due to being sick. I'm still angry that I had to. And it's a new feeling, to feel justified in being angry about an injustice done to me, rather than just afraid and resigned to it happening over and over again. But. I don't deserve to put up with bad treatment from the system. I don't deserve to put up with bad treatment from the system.
I don't deserve to put up with bad treatment from the system.
And neither do you.