Sunday, 24 March 2013
Towels
The last time I wrote this many blog posts in one night you all panicked. Guess it shows there's something in me trying to come out I guess. Can't promise it will be good. Or pretty. Or come out on my blog first rather some more physical method.
Thoughts 2
I don't know why people say they wish they were on a beach somewhere when they need a time out from life. Sure beaches are lovely, and great, but you can only spend so much time on them. I'd rather be skiing, coming in from the cold, sore from where I've pushed myself too hard or where I've fallen, and grabbing that hot chocolate that's so hot it burns your tongue and you don't care, before doing it all over again, and then in the evening when you finally get home, you spend too long in a hot shower or bath, you go into an outdoor hottub and dont move for an hour because you dont want to brave the cold, or you find the nearest bar, drink like hell, and collapse before getting up at 5am to do it all the next day.
But where I want to go to relax? I'd like to be in bed, with a cute boy - I normally wake up around 7.30 am when I'm with him, and I'd open my eyes and even in a half asleep state I'd know I was already smiling and happy, because I'd see him next to me, because I could stay in bed next to him, and curl up next to his body and feel safe and warm just having him there. Because it's still so much of a rarity that I get to see him there, that I can appreciate it at 7.30am, even if I or he had to get up and leave the other in bed, even if the other never roused even slightly as we got up, he's there. I spent my whole night sleeping next to him, and I might never get that chance again. I wasn't even conscious or aware of it, but just waking up and realising that I've spent 8 hours happy and calm and safe because he was there, and he still is, and I can fall back asleep knowing that is the best feeling I can ever have, the most relaxing one. We might even be angry at each other, and we'll still sleep together, and we'll wake up, and we might start arguing 20 minutes later, but for those few moments, that first bit of awareness when you stop sleeping, none of that matters, none of that is important, all that's important and all that matters and all that makes you smile and realise how lucky you are, is them.
But where I want to go to relax? I'd like to be in bed, with a cute boy - I normally wake up around 7.30 am when I'm with him, and I'd open my eyes and even in a half asleep state I'd know I was already smiling and happy, because I'd see him next to me, because I could stay in bed next to him, and curl up next to his body and feel safe and warm just having him there. Because it's still so much of a rarity that I get to see him there, that I can appreciate it at 7.30am, even if I or he had to get up and leave the other in bed, even if the other never roused even slightly as we got up, he's there. I spent my whole night sleeping next to him, and I might never get that chance again. I wasn't even conscious or aware of it, but just waking up and realising that I've spent 8 hours happy and calm and safe because he was there, and he still is, and I can fall back asleep knowing that is the best feeling I can ever have, the most relaxing one. We might even be angry at each other, and we'll still sleep together, and we'll wake up, and we might start arguing 20 minutes later, but for those few moments, that first bit of awareness when you stop sleeping, none of that matters, none of that is important, all that's important and all that matters and all that makes you smile and realise how lucky you are, is them.
Interlude
I'm aware I haven't posted on here in a good while. It's been a very bad start to the year. The last 1/3/6/15 months, depending on where you want to start counting from have been particularly vicious to me, and I know they've been just as bad or worse on a lot of others too. A lot of the people that I would normally turn to in instances like this are barely holding it together themselves.
I have a lot of stuff I want to write about, it would just either take too long, or I'm honestly not sure how to put it down into words, they just wont come out, not because I don't have the vocabulary to express it, I'm just not sure they're feelings and sentiments that can be expressed in written or spoken form. Like linguistic translation, the nuance and specific meaning of what I'd be trying to get across would be lost in the act of communicating it between people.
Maybe I'll get round to it eventually and take a stab at it, maybe I won't. I'm still here. And when I can work out what to write about, I'll put something down. I just don't know when that will be.
When I have time I guess. Time is not forthcoming at any point in my life for the next 3 months that I can see... In the meantime, have a block of solid text about something that's been in my head today:
Someone made me laugh the other day - they said things were bad but at least they hadn't packed their 'running away' bag yet. I laughed because I have the same thing. There's a specific bag that's under my bed. It's the bag that comes out when I need to bolt, for whatever reason. When I was younger, at various points my relationship with my parents was strained (whose wasn't), and I got into a certain habit - my shoes, keys and a jacket would always be near the door or together in my room, my wallet would always be in my jacket pocket, and my mobile phone once I got one, was almost always on my person. I was always ready to bolt straight out the door if needed. And this continues to this day. My phone, wallet, shoes, jacket and keys are almost always kept in the same place, either in my room or near the front door, all more or less next to each other (or in a line that means I can grab each in turn), and ready to go. And as I grew older, and was living in places of my own choosing, this also grew into a bag. Technically I have 3 of them, but some double up for other purposes. One bag is for getting away for a few days, when I just need to run and hide somewhere. One bag lasts me about a week, it's the bag I take when I go back to my parents or am on holiday etc. And one bag, the bag that I can run and never look back with, the bag that's designed not for hiding, but for just simply running, fits about a month's worth of clothing in it, it can keep all the basic toiletries, electronics, and items of supreme sentimental importance that I refuse to let go of in it; everything needed to pick up the absolute basic essentials of my life and I can take it anywhere with me. I don't keep this bag packed. I can pack it in under 15 minutes if I have to. And recently I've wanted to dig that bag out from under my bed so much. As I say, I'm not looking to run and hide, I want to run and never come back and forget everything that I am. And whilst it's not a good reflection of either of our mental states, it is in its own warped and twisted way, comforting to know that someone else has this same bizzare secret ritual.
I have a lot of stuff I want to write about, it would just either take too long, or I'm honestly not sure how to put it down into words, they just wont come out, not because I don't have the vocabulary to express it, I'm just not sure they're feelings and sentiments that can be expressed in written or spoken form. Like linguistic translation, the nuance and specific meaning of what I'd be trying to get across would be lost in the act of communicating it between people.
Maybe I'll get round to it eventually and take a stab at it, maybe I won't. I'm still here. And when I can work out what to write about, I'll put something down. I just don't know when that will be.
When I have time I guess. Time is not forthcoming at any point in my life for the next 3 months that I can see... In the meantime, have a block of solid text about something that's been in my head today:
Someone made me laugh the other day - they said things were bad but at least they hadn't packed their 'running away' bag yet. I laughed because I have the same thing. There's a specific bag that's under my bed. It's the bag that comes out when I need to bolt, for whatever reason. When I was younger, at various points my relationship with my parents was strained (whose wasn't), and I got into a certain habit - my shoes, keys and a jacket would always be near the door or together in my room, my wallet would always be in my jacket pocket, and my mobile phone once I got one, was almost always on my person. I was always ready to bolt straight out the door if needed. And this continues to this day. My phone, wallet, shoes, jacket and keys are almost always kept in the same place, either in my room or near the front door, all more or less next to each other (or in a line that means I can grab each in turn), and ready to go. And as I grew older, and was living in places of my own choosing, this also grew into a bag. Technically I have 3 of them, but some double up for other purposes. One bag is for getting away for a few days, when I just need to run and hide somewhere. One bag lasts me about a week, it's the bag I take when I go back to my parents or am on holiday etc. And one bag, the bag that I can run and never look back with, the bag that's designed not for hiding, but for just simply running, fits about a month's worth of clothing in it, it can keep all the basic toiletries, electronics, and items of supreme sentimental importance that I refuse to let go of in it; everything needed to pick up the absolute basic essentials of my life and I can take it anywhere with me. I don't keep this bag packed. I can pack it in under 15 minutes if I have to. And recently I've wanted to dig that bag out from under my bed so much. As I say, I'm not looking to run and hide, I want to run and never come back and forget everything that I am. And whilst it's not a good reflection of either of our mental states, it is in its own warped and twisted way, comforting to know that someone else has this same bizzare secret ritual.
No Capes
Today I was the unreliable one. Today I didn't get back to people. Today I didn't save the day. Today I didn't do it because no-one else would. I said no. And I don't feel guilty about that in the slightest. Tomorrow I'll put my superhero cape on and swoop in and fix everyone's problems once more. But today I didn't.
Because in the last week, I've almost smashed the TV, thrown my phone across the room straight into the glass patio doors, punched the fridge, turned the stove on just to burn my hand on it, and drop kicked every plate in the house whilst wearing my boots to smash them. I've come dangerously close to all these things. The only way I've avoided it is by gripping onto the arms of my computer chair so firmly I couldn't get up because my entire body was too tensed; by walking out of the room so I couldn't do what was going through my mind right then; instead of throwing my phone across the room I yelled out fuck in a room full of people. Loud enough, but not screaming, but firmly and strongly enough every single one of them dropped what they were doing and stared at me in shock.
Right now I am far from mentally stable.
Right now I am not thinking normally
Right now I am occasionally proving a danger to myself and others by virtue of not thinking properly, or being too sleep deprived and making mistakes.
Right now I am really not okay.
I haven't been okay for a good few weeks. But the last week I've barely managed to maintain even a pretence of self control. This isn't a good sign.
Because in the last week, I've almost smashed the TV, thrown my phone across the room straight into the glass patio doors, punched the fridge, turned the stove on just to burn my hand on it, and drop kicked every plate in the house whilst wearing my boots to smash them. I've come dangerously close to all these things. The only way I've avoided it is by gripping onto the arms of my computer chair so firmly I couldn't get up because my entire body was too tensed; by walking out of the room so I couldn't do what was going through my mind right then; instead of throwing my phone across the room I yelled out fuck in a room full of people. Loud enough, but not screaming, but firmly and strongly enough every single one of them dropped what they were doing and stared at me in shock.
Right now I am far from mentally stable.
Right now I am not thinking normally
Right now I am occasionally proving a danger to myself and others by virtue of not thinking properly, or being too sleep deprived and making mistakes.
Right now I am really not okay.
I haven't been okay for a good few weeks. But the last week I've barely managed to maintain even a pretence of self control. This isn't a good sign.
Eyes
Sometimes I can just close my eyes and imagine you lying here with me so easily. And part of me is so eager to open them and see you smiling back at me again. And the other part of me knows to never open them and pretend you're there for as long as I can
Wednesday, 20 February 2013
If I told you this was killing me, would you stop?
To say it's been a bad 72 hours would be an understatement.
I've had a panic attack where I couldn't move, one of my best friends had to leave again, I'm skirting the bounds of mental instability and having periodic convulsions as a result, I can't recognise the people I live with, my dad just got admitted to hospital for a mini-stroke, problems with registering with a new doctor means I wont get any of the numerous medications I'm in increasingly dire need of for at least a week, I start work again tomorrow, which is good, but means more stress, and in a short while my boss goes on holiday for an extended period of time so I'll be covering her job as well.
There's other stuff that's going on as well that I can't put down. And all this in just 72 hours. Can someone find the remote control for life and press pause? Very quickly. Because that skirting the bounds of mental instability thing? That's not an exagerration at the moment; several people have seen the evidence to back me up on this, and what's going on is making it increasingly hard to stay on the right side of the line. And I know I'm not the only person that's in this position. I don't mind the bad stuff happening, it's okay, I'll deal with it, I just need it to spread itself out a bit more.
I'll write more about the mental issues I'm having shortly, I just wanted to get the above into type.
I've had a panic attack where I couldn't move, one of my best friends had to leave again, I'm skirting the bounds of mental instability and having periodic convulsions as a result, I can't recognise the people I live with, my dad just got admitted to hospital for a mini-stroke, problems with registering with a new doctor means I wont get any of the numerous medications I'm in increasingly dire need of for at least a week, I start work again tomorrow, which is good, but means more stress, and in a short while my boss goes on holiday for an extended period of time so I'll be covering her job as well.
There's other stuff that's going on as well that I can't put down. And all this in just 72 hours. Can someone find the remote control for life and press pause? Very quickly. Because that skirting the bounds of mental instability thing? That's not an exagerration at the moment; several people have seen the evidence to back me up on this, and what's going on is making it increasingly hard to stay on the right side of the line. And I know I'm not the only person that's in this position. I don't mind the bad stuff happening, it's okay, I'll deal with it, I just need it to spread itself out a bit more.
I'll write more about the mental issues I'm having shortly, I just wanted to get the above into type.
Monday, 21 January 2013
Aftermath 3/Results 2
A week and a half ago it was time to visit that most delightful of all additions to my life, the HIV clinic.
I'd been just before Christmas to discuss starting meds - I wanted to start meds pretty much as soon as possible after my diagnosis but there were various tests that had to be run first and such. I can't be put on one of the most commonly used drugs as it tends to cause depression in people, and I already have a history of suicidal depression so that's pretty much a no-brainer. My doc ran some extra tests to check for any drug resistances, allergies, and also ran her suggested treatment regime past some of her colleagues to see if they had any other suggestions and this december appointment was all about the results of all that.
I actually opted not to start the meds right then - starting a few days before the Christmas & New Year period, when my routine was hardly going to be regular (not that my life can ever really said to be have any form of proper routine or regularity, but still), my eating, alcohol consumption and sleeping habits were likely to be all out of whack, and regular clinics would be shut for the holidays with access only to emergency care via A&E departments. Added to this the never ending list of potential side effects from HIV meds - if they were serious I wouldn't have quick and easy access to my clinic to adjust my medication; if they were minor I'd spend the holiday period feeling like crap - and it just seemed far more sensible actually start the meds in January.
So January comes around and its time for another appointment. I'm now on a set of medication, 3 different pills all to be taken once a day with food. I happen to take mine at midnight, which is probably an irregular time for most people but for me I'm either at home, usually eating dinner around then anyway, getting in from work, finishing work, or far enough through work that I can take a 10 minute break to eat a mars bar, grab a drink and neck some pills and no-one will argue. I've actually been very lucky and had none of the side effects that tend to happen, not even the relatively minor (and also rather common) ones. And despite the completely fucked up state of my body's health even without the HIV, wherein it seems to just about hold itself together through some sort of delicate balance of all the various messes, the meds haven't had any knock-on effects to any of my other medical conditions either, so that's a good win all round really.
I've been taking them for just under 2 weeks now and it's all going fine, on the outside at least, in another 2 weeks I go back for more tests to check they are actually working and doing their job and also not destroying my body on the inside in some outwardly as yet unnoticed manner, but I'm pretty much expecting all that to come back fine. I haven't missed a dose yet which is good. Saturday night did mark the first point I had to adjust my life to my treatment regime though - I was working till midnight and a friend had invited me over after. And as I went to grab the cereal bar I now keep in my bag and take my meds just before leaving work, I found I'd neglected to put my meds in my bag before leaving the house - one of those instances of seeing things on the table and thinking "I really must remember to pack those" and then actually not doing so. So instead of seeing my friend I had to go home instead, and prioritize my medication, which of course was the right thing to do, but it still marks the first time I've had to reconstruct my life and plans around the fact that I now have to ensure that every day for the rest of my life I take a set of medication at more or less the same time each day. It did however mean I got to watch the season opening New York Rangers game versus the Bruins. Okay we lost, but there is NHL hockey in my life again, and Lundqvist made such an amazing glove save that I could probably just be happy if that's all that comes out of the Rangers' entire season.
I've also had another set of CD4 and viral load results.
Back in November, my CD4 was 570 and my VL was 97k.
From my December appointment, my CD4 is up to 1200 and my VL is down a little to 89k.
So my body has an immune response! Who knew?! I mean your body is supposed to have an immune response, but this is my body we're talking about, and it never really does what it's supposed to. My body appears to have noticed it has a horrible infection, ramped up the immune system as a result, and is even managing to fight the thing somewhat.
Of course, this is what the sneaky HIV wants to happen, as my body ramps up the immune response that just gives it more T-cells to infect and turn into HIV ultimately, leading me down a long and dark road of unpleasant demise. But that's what the meds are for. They stop that. Yay meds!
In other health news, I finally have an official address in London once more, that I can send mail to and everything. Which means for the first time in 18 months I can register with a GP. This is going to be entertaining, as there's basically a whole host of things that I haven't really dealt with cause they haven't been urgent, but have still been building up over time. And I'm now running very low on the stockpiles of various medications I keep for all my other various conditions and problems. And the problem with having spent ~20 years in and out of hospitals, being case studies for research groups and such, is that you know quite a lot about how to medicate. So I basically have a shopping list to go to my GP with. Doctors don't tend to like it when you do this. And amongst the items in that shopping list, I need some sleeping pills, because I'm fed up at struggling through the worst bits of my insomnia, and the pain meds that I'm currently on for my intestinal cramps I've grown too tolerant of, and need to switch from, so I'm asking for something stronger. Which means a boy with a history of attempted suicide, suicidal thoughts, and a mood disorder, is going to ask to be given large quantities of super strong pain pills and sleeping tablets. If I'm lucky my doctor is dumb and the pharmacist is blind and no-one notices any GIANT RED FLAGS going off about that one. For the record, I'm not ever planning to use the drugs to commit suicide - there's a nice block against me acting on any suicidal thoughts in my mind right now due to certain circumstances in life - I genuinely do want the drugs for my various medical problems, but I suspect the system will still set off a few alarms when all that goes together.
I'd been just before Christmas to discuss starting meds - I wanted to start meds pretty much as soon as possible after my diagnosis but there were various tests that had to be run first and such. I can't be put on one of the most commonly used drugs as it tends to cause depression in people, and I already have a history of suicidal depression so that's pretty much a no-brainer. My doc ran some extra tests to check for any drug resistances, allergies, and also ran her suggested treatment regime past some of her colleagues to see if they had any other suggestions and this december appointment was all about the results of all that.
I actually opted not to start the meds right then - starting a few days before the Christmas & New Year period, when my routine was hardly going to be regular (not that my life can ever really said to be have any form of proper routine or regularity, but still), my eating, alcohol consumption and sleeping habits were likely to be all out of whack, and regular clinics would be shut for the holidays with access only to emergency care via A&E departments. Added to this the never ending list of potential side effects from HIV meds - if they were serious I wouldn't have quick and easy access to my clinic to adjust my medication; if they were minor I'd spend the holiday period feeling like crap - and it just seemed far more sensible actually start the meds in January.
So January comes around and its time for another appointment. I'm now on a set of medication, 3 different pills all to be taken once a day with food. I happen to take mine at midnight, which is probably an irregular time for most people but for me I'm either at home, usually eating dinner around then anyway, getting in from work, finishing work, or far enough through work that I can take a 10 minute break to eat a mars bar, grab a drink and neck some pills and no-one will argue. I've actually been very lucky and had none of the side effects that tend to happen, not even the relatively minor (and also rather common) ones. And despite the completely fucked up state of my body's health even without the HIV, wherein it seems to just about hold itself together through some sort of delicate balance of all the various messes, the meds haven't had any knock-on effects to any of my other medical conditions either, so that's a good win all round really.
I've been taking them for just under 2 weeks now and it's all going fine, on the outside at least, in another 2 weeks I go back for more tests to check they are actually working and doing their job and also not destroying my body on the inside in some outwardly as yet unnoticed manner, but I'm pretty much expecting all that to come back fine. I haven't missed a dose yet which is good. Saturday night did mark the first point I had to adjust my life to my treatment regime though - I was working till midnight and a friend had invited me over after. And as I went to grab the cereal bar I now keep in my bag and take my meds just before leaving work, I found I'd neglected to put my meds in my bag before leaving the house - one of those instances of seeing things on the table and thinking "I really must remember to pack those" and then actually not doing so. So instead of seeing my friend I had to go home instead, and prioritize my medication, which of course was the right thing to do, but it still marks the first time I've had to reconstruct my life and plans around the fact that I now have to ensure that every day for the rest of my life I take a set of medication at more or less the same time each day. It did however mean I got to watch the season opening New York Rangers game versus the Bruins. Okay we lost, but there is NHL hockey in my life again, and Lundqvist made such an amazing glove save that I could probably just be happy if that's all that comes out of the Rangers' entire season.
I've also had another set of CD4 and viral load results.
Back in November, my CD4 was 570 and my VL was 97k.
From my December appointment, my CD4 is up to 1200 and my VL is down a little to 89k.
So my body has an immune response! Who knew?! I mean your body is supposed to have an immune response, but this is my body we're talking about, and it never really does what it's supposed to. My body appears to have noticed it has a horrible infection, ramped up the immune system as a result, and is even managing to fight the thing somewhat.
Of course, this is what the sneaky HIV wants to happen, as my body ramps up the immune response that just gives it more T-cells to infect and turn into HIV ultimately, leading me down a long and dark road of unpleasant demise. But that's what the meds are for. They stop that. Yay meds!
In other health news, I finally have an official address in London once more, that I can send mail to and everything. Which means for the first time in 18 months I can register with a GP. This is going to be entertaining, as there's basically a whole host of things that I haven't really dealt with cause they haven't been urgent, but have still been building up over time. And I'm now running very low on the stockpiles of various medications I keep for all my other various conditions and problems. And the problem with having spent ~20 years in and out of hospitals, being case studies for research groups and such, is that you know quite a lot about how to medicate. So I basically have a shopping list to go to my GP with. Doctors don't tend to like it when you do this. And amongst the items in that shopping list, I need some sleeping pills, because I'm fed up at struggling through the worst bits of my insomnia, and the pain meds that I'm currently on for my intestinal cramps I've grown too tolerant of, and need to switch from, so I'm asking for something stronger. Which means a boy with a history of attempted suicide, suicidal thoughts, and a mood disorder, is going to ask to be given large quantities of super strong pain pills and sleeping tablets. If I'm lucky my doctor is dumb and the pharmacist is blind and no-one notices any GIANT RED FLAGS going off about that one. For the record, I'm not ever planning to use the drugs to commit suicide - there's a nice block against me acting on any suicidal thoughts in my mind right now due to certain circumstances in life - I genuinely do want the drugs for my various medical problems, but I suspect the system will still set off a few alarms when all that goes together.
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