This too shall pass
Apr. 28th, 2018 20:12![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
torquillMy head is full of ants and sandpaper.
The last time I felt this uncomfortable was three years ago, and I had really been hoping to spend a few more years in relative comfort, but oh well.
Usually it happens because I have a personal-growth spurt, and I outgrow my current life (environment, relationships, goals). My current life is still pretty fresh and flexible, and I'm not tired of it yet. This time, my discomfort comes from events. A couple of things which are, on the outside, good things. But good doesn't mean comfortable.
I joked that it would be a race between whether I got SSI first, or a cure for CFS. Since life loves irony, they appear to be in a dead heat. I just received the written decision in my favor; meanwhile, in three weeks of actively trying to exhaust my stamina, I haven't managed it. I have become uncrashable.
I think that only someone who has had a long chronic illness, and the financial stresses thereof, can really understand all the emotions these things have stirred up. It's hitting me all at once, strong and sometimes conflicting, until I'm not even sure how I want to feel about it.
There is profound relief at getting SSI, of course -- without it, my finances would collapse in about two years, as I reached the limit on my credit card (while paying most of my support into it every month). SSI will give me breathing space, and the possibility of actually living within my means, barring disaster. Financial stress is some of the worst kind, and I'm glad to be rid of it. Likewise, I'm relieved to be done with the process, which was grueling and emotionally traumatic.
I'm more aware than ever that the means I'll be living within are small and constricting, and I resent that. I've been reminded of how threadbare my belongings are -- literally, most of my clothes have holes. I'm angry about how little disabled people are expected to live on in this country, and how we are supposed to grovel for it, then remain eternally grateful for society's charity. That chafes.
I resent having to ask for that support in the first place. All I've ever wanted was to be self-supporting -- I personally find handouts distasteful, and yet I've had to rely on them my whole life. Getting financial help from family is bad enough, but to require it from the state hurts my pride. I would love to have a normal job like my friends do, but I am denied that.
And that brings me to the other horse coming down the road: my health. Many times, I have made plans to introduce more stability to my life, or improve my situation, only to have a downturn scuttle them for months or years. This is the opposite, and it confuses me. It was only a few years ago that I even conceived of the possibility of a cure, and it seemed like a fantasy; I had resigned myself to having CFS my entire life. My first appointment at Stanford rattled me badly, as it gave me my first real taste of hope. The positive test results were vindication and relief and dismay, as I got my first look at my opponents. And I did a great deal of soul-searching before embarking on a course of medication, as the potential for dramatic changes shook me again.
There was no dramatic change, and I settled back into my life. At the beginning of February, I discovered that the CFS trigger which had destroyed so much of my life, glycol ether exposure, had silently vanished, slipping away as though it had never been. I took it as an unexpected, but limited, benefit of the medication, and I was grateful but not overwhelmed. Life went on as usual, until I had mostly recovered from the stress and trauma of building a case for my SSI hearing. I took the first week of April to rest, and the second for a kind of sabbatical to recharge my emotional and mental batteries. I ended up hiking about 20 miles that week, and I was puzzled by the fact that I hadn't crashed yet. Another week passed, and I started trying to wear myself out. It's now been yet another of intense activity, and I'm almost sure; after another week I will report to my Stanford doctor that we've beaten my CFS.
I'm not healthy -- I still have significant inflammation and chronic pain, though it's been more manageable lately. But I keep expecting to feel the drag, the weakness in my abdomen, the burn in my muscles, the fever, the mental fog. It's like waiting for a hammer blow that never comes. It's not that I fear a crash, or the fact that it would prove that I'm not out of the woods. If anything, I'm apprehensive that it won't come, ever. That I'll be waiting for it until I forget to listen for it, until this becomes the new normal. Until I learn to live without it.
Living without CFS scares me far more than living with it.
My therapist likened me to a tiger who has lived its whole life in a cage, and suddenly the cage door is thrown open. I have trouble even assimilating that I am free to go. I distrust it, expecting that new development to vanish again at any moment. I fear leaving my familiar surroundings, as confining and depressing as they are. I fear the unknown outside, which I can barely even glimpse -- the scope of my imagination has been so stunted that the notion of living outside my old limitations is completely alien.
It's that gap in comprehension that made me realize many months ago that if I did get rid of my disabilities, I might very well go through a major personality overhaul (again). So much of me is constructed around my physical limitations: how I view the world and my place in it, how I carefully measure out my effort and commitments, the type of work I can do, what my relationships look like, and particularly what my resources are. Last time I went through that process I carefully shaped someone who met my limits with acceptance, who could work within those bounds without constantly chafing at them. Like the tiger, I might end up carrying my cage with me, even when I have physically left it behind. The fact that I have multiple blind spots of which I can only start to see the edges suggests that I might not be able to adapt and stretch far enough to meet a new life, though I will certainly try.
Those blind spots make the unknown even more scary. I can't imagine working a full-time job for months or years -- my attempts to date have been traumatic failures, and the idea that I could do it successfully is like trying to believe I could walk on the moon. My understanding of financial matters is warped by a lifetime of moderate poverty, and the scale of the budgets my friends operate on feels like a normal person rubbing elbows with millionaires. I find myself even struggling with the fact that I can work on some project (say, fixing up the vegetable garden) all day, then go to bed and work on it all the next day, and the next, and the next. This past couple of weeks I've been actually running into the limits of my brain, which isn't accustomed to focusing and context-switching for a large part of every day. It's as out-of-condition as my thigh muscles which protest biking for miles, even though I now have the energy to keep going and going. I find myself craving rest that my body doesn't need.
I've lost my life balance, and I haven't been able to find a new one yet. I've lost my emotional stability as well, and I feel irritable and full of sandpaper because I can't figure out what my needs are or what would satisfy them. The change I had seen as a possibility is now on me in full force, and I'm just as unprepared as I was at the start.
Underneath all the confusion is a burning rage which I try not to think about too much... the knowledge that all it took to defeat the illness which has crippled me for nearly 25 years was a blood test and a readily-available, affordable pill with a low risk of side effects. This drug was released the year before I crashed for the first time, and the relevant blood test was developed in 2004 -- but for what was considered a minor virus that didn't have a lot of impact. If the CDC hadn't denied the existence of CFS from the mid-80s well into the new century, research and developments could have been made that would have cut short my illness by at least ten years. My doctors would have had some idea what to do, rather than running the same tests over and over again and shrugging. I understand that a lot of the discoveries now are being made with science developed in the last five years, but the groundwork hadn't been done, and we're still working with almost no funding. All because the CDC decided to deny the very existence of a disease it considered to be malingering by hysterical women. I doubt that I will ever forgive them for that. I am not accustomed to holding grudges, but it's very hard to let go of that anger.
I'm trying to give myself space to feel, which is a good starting point. Amy is calm and panicky by turns, and can't even articulate half of what's going on. I'm trying to see to my basic physical needs like eating and drinking, but sleep has me off-kilter too because I've started waking up on my own after seven or eight hours, and that's weird. I'm giving my mind the breaks that my body no longer demands, and trying not to feel like it's "wasted time". And I'm trying to be present, to remind myself that my world is still the same familiar place, there's no crisis. But that doesn't quell the restlessness, the sense of waiting for something to happen.
I've found a treatment after twenty years. I should be happy, right?
All I want to do is curl myself into a ball under the couch and never come out.
The last time I felt this uncomfortable was three years ago, and I had really been hoping to spend a few more years in relative comfort, but oh well.
Usually it happens because I have a personal-growth spurt, and I outgrow my current life (environment, relationships, goals). My current life is still pretty fresh and flexible, and I'm not tired of it yet. This time, my discomfort comes from events. A couple of things which are, on the outside, good things. But good doesn't mean comfortable.
I joked that it would be a race between whether I got SSI first, or a cure for CFS. Since life loves irony, they appear to be in a dead heat. I just received the written decision in my favor; meanwhile, in three weeks of actively trying to exhaust my stamina, I haven't managed it. I have become uncrashable.
I think that only someone who has had a long chronic illness, and the financial stresses thereof, can really understand all the emotions these things have stirred up. It's hitting me all at once, strong and sometimes conflicting, until I'm not even sure how I want to feel about it.
There is profound relief at getting SSI, of course -- without it, my finances would collapse in about two years, as I reached the limit on my credit card (while paying most of my support into it every month). SSI will give me breathing space, and the possibility of actually living within my means, barring disaster. Financial stress is some of the worst kind, and I'm glad to be rid of it. Likewise, I'm relieved to be done with the process, which was grueling and emotionally traumatic.
I'm more aware than ever that the means I'll be living within are small and constricting, and I resent that. I've been reminded of how threadbare my belongings are -- literally, most of my clothes have holes. I'm angry about how little disabled people are expected to live on in this country, and how we are supposed to grovel for it, then remain eternally grateful for society's charity. That chafes.
I resent having to ask for that support in the first place. All I've ever wanted was to be self-supporting -- I personally find handouts distasteful, and yet I've had to rely on them my whole life. Getting financial help from family is bad enough, but to require it from the state hurts my pride. I would love to have a normal job like my friends do, but I am denied that.
And that brings me to the other horse coming down the road: my health. Many times, I have made plans to introduce more stability to my life, or improve my situation, only to have a downturn scuttle them for months or years. This is the opposite, and it confuses me. It was only a few years ago that I even conceived of the possibility of a cure, and it seemed like a fantasy; I had resigned myself to having CFS my entire life. My first appointment at Stanford rattled me badly, as it gave me my first real taste of hope. The positive test results were vindication and relief and dismay, as I got my first look at my opponents. And I did a great deal of soul-searching before embarking on a course of medication, as the potential for dramatic changes shook me again.
There was no dramatic change, and I settled back into my life. At the beginning of February, I discovered that the CFS trigger which had destroyed so much of my life, glycol ether exposure, had silently vanished, slipping away as though it had never been. I took it as an unexpected, but limited, benefit of the medication, and I was grateful but not overwhelmed. Life went on as usual, until I had mostly recovered from the stress and trauma of building a case for my SSI hearing. I took the first week of April to rest, and the second for a kind of sabbatical to recharge my emotional and mental batteries. I ended up hiking about 20 miles that week, and I was puzzled by the fact that I hadn't crashed yet. Another week passed, and I started trying to wear myself out. It's now been yet another of intense activity, and I'm almost sure; after another week I will report to my Stanford doctor that we've beaten my CFS.
I'm not healthy -- I still have significant inflammation and chronic pain, though it's been more manageable lately. But I keep expecting to feel the drag, the weakness in my abdomen, the burn in my muscles, the fever, the mental fog. It's like waiting for a hammer blow that never comes. It's not that I fear a crash, or the fact that it would prove that I'm not out of the woods. If anything, I'm apprehensive that it won't come, ever. That I'll be waiting for it until I forget to listen for it, until this becomes the new normal. Until I learn to live without it.
Living without CFS scares me far more than living with it.
My therapist likened me to a tiger who has lived its whole life in a cage, and suddenly the cage door is thrown open. I have trouble even assimilating that I am free to go. I distrust it, expecting that new development to vanish again at any moment. I fear leaving my familiar surroundings, as confining and depressing as they are. I fear the unknown outside, which I can barely even glimpse -- the scope of my imagination has been so stunted that the notion of living outside my old limitations is completely alien.
It's that gap in comprehension that made me realize many months ago that if I did get rid of my disabilities, I might very well go through a major personality overhaul (again). So much of me is constructed around my physical limitations: how I view the world and my place in it, how I carefully measure out my effort and commitments, the type of work I can do, what my relationships look like, and particularly what my resources are. Last time I went through that process I carefully shaped someone who met my limits with acceptance, who could work within those bounds without constantly chafing at them. Like the tiger, I might end up carrying my cage with me, even when I have physically left it behind. The fact that I have multiple blind spots of which I can only start to see the edges suggests that I might not be able to adapt and stretch far enough to meet a new life, though I will certainly try.
Those blind spots make the unknown even more scary. I can't imagine working a full-time job for months or years -- my attempts to date have been traumatic failures, and the idea that I could do it successfully is like trying to believe I could walk on the moon. My understanding of financial matters is warped by a lifetime of moderate poverty, and the scale of the budgets my friends operate on feels like a normal person rubbing elbows with millionaires. I find myself even struggling with the fact that I can work on some project (say, fixing up the vegetable garden) all day, then go to bed and work on it all the next day, and the next, and the next. This past couple of weeks I've been actually running into the limits of my brain, which isn't accustomed to focusing and context-switching for a large part of every day. It's as out-of-condition as my thigh muscles which protest biking for miles, even though I now have the energy to keep going and going. I find myself craving rest that my body doesn't need.
I've lost my life balance, and I haven't been able to find a new one yet. I've lost my emotional stability as well, and I feel irritable and full of sandpaper because I can't figure out what my needs are or what would satisfy them. The change I had seen as a possibility is now on me in full force, and I'm just as unprepared as I was at the start.
Underneath all the confusion is a burning rage which I try not to think about too much... the knowledge that all it took to defeat the illness which has crippled me for nearly 25 years was a blood test and a readily-available, affordable pill with a low risk of side effects. This drug was released the year before I crashed for the first time, and the relevant blood test was developed in 2004 -- but for what was considered a minor virus that didn't have a lot of impact. If the CDC hadn't denied the existence of CFS from the mid-80s well into the new century, research and developments could have been made that would have cut short my illness by at least ten years. My doctors would have had some idea what to do, rather than running the same tests over and over again and shrugging. I understand that a lot of the discoveries now are being made with science developed in the last five years, but the groundwork hadn't been done, and we're still working with almost no funding. All because the CDC decided to deny the very existence of a disease it considered to be malingering by hysterical women. I doubt that I will ever forgive them for that. I am not accustomed to holding grudges, but it's very hard to let go of that anger.
I'm trying to give myself space to feel, which is a good starting point. Amy is calm and panicky by turns, and can't even articulate half of what's going on. I'm trying to see to my basic physical needs like eating and drinking, but sleep has me off-kilter too because I've started waking up on my own after seven or eight hours, and that's weird. I'm giving my mind the breaks that my body no longer demands, and trying not to feel like it's "wasted time". And I'm trying to be present, to remind myself that my world is still the same familiar place, there's no crisis. But that doesn't quell the restlessness, the sense of waiting for something to happen.
I've found a treatment after twenty years. I should be happy, right?
All I want to do is curl myself into a ball under the couch and never come out.
