Jul 17, 2017

Stigma.

I can't be bothered trying to explain yet again how bad the stigma is for ADHD, particularly in adult women...or how it's not a personality flaw, it's not a fake disorder, the medication isn't something that has negative long or short term outcomes, and I'm not dangerous, faking, lazy, uncaring or immature. It wouldn't mean anything coming from me anyway. That's the nature of stigma. This article rang too true. Let a peer-reviewed article do the damned work instead.

Stigma and ADHD.

Jul 16, 2017

Hiatus

You. Yes you, fictional reader on the internet. You're probably wondering what ever happened here, with three years passing and not a word (if anyone still reads this). I'm not being self-depreciating, I just honestly have no idea if they do anymore. This is an aside. I never really know how to start posts, but at least I'm starting one. Hi.

During the week of my last post, I had a huge emotional meltdown because I was really badly beaten up about an ADHD diagnosis. There is so much stigma surrounding ADHD, and pretty much everything that exists as a layman's idea of what ADHD is in Western society, or at least in the social circles I was in then didn't even come close to lining up with my lived symptoms and were mostly derogatory.

The diagnosis was a kick when I was down, and when I did go on medication, it was fast-release stuff that heightened my anxiety - at a time when everyone around me either talked about me in hushed tones while they thought I wasn't noticing, or they had this great diet I could try instead of drugs, or ADHD isn't real, or weed cured all of my illnesses you should try it, or have you tried going vegan? Have you tried cutting out sulphites from your diet? Have you tried removing food additives?

It felt like people were trying their hardest to make sure that this really wasn't what was wrong with me, it might be something much more palatable. I felt so fucked up. I felt like I was a joke and a failure. There were those people, and there were the people that just stopped inviting me out, and began to treat me like I had two heads. My ability to focus while on medication was much better, but it wasn't quite right yet, and I'd be doing better at uni but super anxious and sleepless on medication as well. Honours was hugely stressful. I had teachers telling me not to bother. I had friends who just let me stay isolated because I was too much, too concerned with their own social wins and how things "looked". I had lots of other health issues at the time, it was easy to write this all off and just bury my head under the covers.

Somehow I got through honours and moved the hell away from the people who had made things harder that year. Then I had a few years from hell, where I had deaths in the family and all manner of things happen at once. There was no room or time to think about why I was getting sicker, I kind-of blinked and I was in 2017 and living on the other side of the city, using every shred of my waning energy to get to work each day so that I could afford to pay the bills.

My memory was shot. I was so anxious and depressed that I barely left the house unless I had to, and that was at the best of times. I got so sick that my liver started to malfunction for a while there and my bloodwork was all over the place, my blood pressure was a mess, I was sleeping at least 13 hours a day and still exhausted through my every waking hour. I had a suicide plan in case things got any worse than they were. The people who had hurt me and who I'd pushed away found their way back in and made things harder in my life, once I was isolated in a new town, I'd had relatives pass away all-at-once, and I was at my most fragile. It's been a hell of a few years.

Over the past few months I've gone past being miserable about the concept of ADHD as a potential diagnosis, and into full-blown desperation to find anything that would help me as my body kept steadily shutting down and the bills kept constantly coming in. Government support was hopeless, almost completely unavailable to me, and frankly demoralising. I'd found myself on the other side of the city and away from any solid support network. I didn't know what to do anymore, I was at my wit's end and didn't feel that I could even really talk to people, I couldn't focus and at my worst moments, I struggled with selective mutism and getting words out at all was not possible when I needed to most. I went back to my specialist, after three years.

We tried something new to treat ADHD and it just kind-of clicked. I've spent a month and a half reorganising the absolute mess that my life was in, that I hadn't seemed to notice had fallen by the wayside. I stopped being so tired. My anxiety all but left the building. I took the components of my suicide plan out of my medicine cabinet and threw them in the bin. I started to be able to communicate clearly with people about what I was going through, and better yet move past it. I started listening to the right people, and walking away from the wrong ones.

So that was it. That was my hiatus. I do have ADHD. It's not something I talk about with everyone, and it's nothing like what you'd expect. At. All. I worked really hard in therapy and got through my PTSD last year, but I was still really sick. Some things you can't hide from.

In case anyone else out there is struggling with a diagnosis and feels like the medical industry has taken an approach with them of just diagnosing everything until something sticks at the cost of your actual health over the years, these were my symptoms after years of searching for answers:

  • Chronic fatigue
  • Chronic pain
  • Insomnia
  • Selective Mutism
  • Social Anxiety
  • Severe problems getting out of bed upon waking
  • Forgetfulness, even when things were important and mattered to me
  • Trouble remembering names
  • Low immune system
  • Depression
  • Anxiety
  • Struggles with task completion
  • Struggles with timeliness
  • Struggles with memory
  • Impulsivity
  • Short temper that is gone as fast as it appears
  • Feeling like a failure
  • Social Isolation
  • Withdrawal from recreational and social activities 
There was no running about. There was no bouncing off the walls. Being sick in the ways it presented in me was nothing like the the picture I'd always had of ADHD in my head. So many people attributed what I was going through to personality flaws, laziness, a lack of care for others, selfishness, intentional flakiness and snappiness, or me just being a hypochondriac. I wasn't the picture of that naughty boy in class that wouldn't sit still. I'm so sick of the way people joke about and talk about ADHD in the social sphere, because it's way off and to be honest it could've led to my death.

I hope talking about this helps people. I hope it helps people that don't know what's wrong and are starting to blame themselves, and I hope it helps other people to stop being such dicks. I swear to god, ADHD is Depression and Anxiety's weird cousin on facebook. Everyone wants to post about being supportive of mental illness. Nobody even thinks about what else it might be, and what support for that looks like. It's such a common disorder, and it's so dangerous to ignore. People with ADHD have a 30% increased risk of suicide compared the people without it, and for those who aren't medicated, the risk increases. It's estimated that 5-11% of people have ADHD, and that despite its equal prevalence across sexes, women are chronically underdiagnosed and misdiagnosed. It's really not rare. Why does nobody seem to understand it? Do you know someone being treated for a mental illness that doesn't respond to the treatment? Are they female? Who are they? Have they considered ADHD? Are you there for them? Do you even know how to be? I had no idea at all.

So here I am now, in my 30s, trying to play catch-up with my life and feeling like I'm running at full-tilt just to get to where everyone else already is at my age. Medication has taken away a great deal of my issues, but there are still things that I will always struggle with. How I got through the last half of my honours degree without medication, I will never know. How I managed to survive the past couple of years is probably a combination of being too tired to kill myself most days and just being very lucky. It's nice to be past that, but it's scary to think about. I wonder how many people didn't get to this point, and I think about what can be done to prevent that sometimes.

I learned very quickly this year who my friends were, and who were simply seeing someone at their most fragile and taking advantage as much as possible. This sounds so dark. I don't often afford myself time to just sit like this with all of my thoughts, because unless it's being considered in order to move onto something more positive, it seems like a dangerous kind of thing to get locked onto.

What I'm making my life about now is ignoring thoughts on how this is so unfair. About how much easier it would've been if it had been caught sooner. About how much easier things would've been if people had cared enough to be there for me when things were the hardest. I think that comes from a place of thinking that life owes you something, simply for existing. I don't want to mourn my life. I just want to live it and achieve the things that I daydream about, now that I have the means to do so. I internally eyeroll every time someone tries to build me up by telling me what a rough deck I've been dealt. 

I just got the keys to my life handed to me. I need to figure out what the fuck I'm going to do with it now. I have a plan that I can actually start to stick to here. It's daunting, but it's also exciting. The first thing I've started to do is go looking for the type of people that I want to become. I can socialise without being terrified that I'm going to fuck everything up and get hurt now, I can focus enough to actually follow conversations in crowds too. I need to take that and do something with it. 

That's what I need right now. Not your new diet for management without drugs. Not your soapbox opinion on the existence of this disorder. I get it. Jet fuel doesn't melt steel beams. The thing is, actual medical conditions are not really a polite discussion point. We already know they exist. It's not up to your interpretation. Go and muse over some abstract painting in an art gallery or something while I'm over here trying to live through this and make something of myself. I don't have time for that sort of nonsense, and to be honest, I won't always tolerate it. I want to embrace my life. I'm so lucky to be alive. I'm so relieved that I made it to here. I want to be with friends now, making happy memories and going out and doing things now that I finally can. Just to be able to get out of bed without feeling like I'm going to pass out is absolutely wonderful.

I have so much to do now. I've spent this month just trying to put paperwork and tasks in order that were left wherever they were dropped. I spent ages re-doing my budget so that I could finally live within my means and not worry about forgotten bills or memberships coming up for renewal. It's finally working. 

Now that I can be something, what does that look like? Where does that take me? How do I get there? What are the risks involved? I've got a lot of it figured out, but there's so much to do, and all I want to do is jump ahead and be there right now. I need to keep working toward the same thing every day and stay patient. I need to be around people so that I keep up momentum to achieve these goals and keep living instead of just existing the way I was. I'm hoping that the next post I publish will be another step in the right direction. I've at least got my friendships and family to a point now where I'm comfortable and it feels supportive, but the rest of my life is completely up-in-the-air. I want to keep working on these positive things now that I have been given this opportunity.

Can I do this? I want to do this. This has to be my turning point, I'm ready for this now. I'm so much happier now. I'm so excited for the future. I have to stick at this. That was a lot. Thanks for visiting.

Aug 21, 2014

let the good times roll

Yes, I'm so legitimately shitty at my body that I gimped it its very own award.

I feel like I'm playing illness bingo. Urghhhhhhh. So, after minor surgery on Tuesday and being taken off ADHD meds, I passed out every single day and gave up and went back on them today after calling my specialist (GP took me off them as I was super depressed and also showing signs of the beginnings of septic shock that might've explained the inattentiveness). I went into meltdown, made worse by being provoked and put down by people in the last couple of days that really should have known better. Blood pressure is hovering around 100/70 at the moment, so it's lowish but okay. The hives have stopped since the surgery to remove the implant. But yeah, the blackouts and emotional distress kept right on.....

My body appears to be taking the "por que no los dos" approach to illness....actually it's taking the goddamned Pokemon approach to it....HEY GUISE I HERD U LIEK BEING EXHAUSTED AND MISERABLE AND SICK AS FUCK SO I THOUGHT I'D CATCH YOU EVERY ILLNESS EVER! Well fuck you, guy. Stupid, stupid-ass body. I'd be angrier, but I'm too damned tired. I haven't cried today or passed out, so I'm taking that as a small win for the day (I have every other day this week). Been awake more than three hours? Check! Emotional exhaustion present but capable of being somewhat hidden from others for the day? Check! Good-o.


So, here's what the current medical theory is:
  • Immune response to implanon triggered sepsis
  • Combined Adult ADHD 
  • Chronic Fatigue Immune Dysfunction Syndrome
  • Social isolation worsening symptoms
  • Uni stress worsening symptoms
  • Family stress worsening symptoms
Basically, my body decided while it was forming/growing/maturing/whatever that its reaction to my efforts to do anything without horrible isolation, failure, exhaustion, emotional distress, psychogenic pain, losing consciousness, etc would just be "NOPE". Hot damn I need a hug this week. I have stitches in one arm, blood test punctures in the other, all my glasses have salt residue on them from crying, my room is a mess and I'm too weak to clean it, I have uni work coming out of my ears that I can barely focus on, I'm really socially isolated, I'm anxious and unhappy, and I'm tired most of the time. Blood results tomorrow, my money is on "inconclusive". If only I won a prize for correct blood result guesses.

Feeling - completely exhausted
Watching - The Legend of Korra (at least that part of today is fun)

Aug 18, 2014

some friends

So as anyone reading this would probably know, I've been feeling like shit lately. I'm really, really fed up. I'm over the people in my life that bullshit about "taking some time for themselves" and how they "feel bad about being selfish, even though blah blah blah". You're being selfish. That's why you feel that way. And no, I haven't been just fine without you all around. After resigning myself to writing all the crap I've been going through just down to poor mental health, I blacked out for four hours today and I had a migraine all weekend. I'm fucking sick of people telling me everything is in my head. I ended up at the doctors today and my blood pressure is too low, so they are now thinking that this might be the actual cause of mood changes, exhaustion, trouble focusing etc. And that I'm probably anxious and depressed as a result of that, on top of the constant isolation from peers. More freaking blood tests and scans. I've blacked out twice in as many days, and I'm still trying to drive myself around, get through uni, write a freaking thesis......but where the fuck are my friends?

I'm sure they're off having some really inspirational little chat about how they care so much but they are not around for whatever supposed reason. Well, guess what? I'm fucking sick, and you're not here. I am so sick and tired of being let down by people when I can barely stand and everything in daily life is a huge effort. I swear to god people must think I'm just talking out of my arse or something. I'm not fucking okay, and half of you assholes are sitting there sharing shit about loyalty and mental health and "R U ok" and god knows what else on facebook, and never say a word to me. I'm so sick and tired of all of this. I'm stressed, dizzy, exhausted and alone, ALL OF THE TIME. What a difficulty for you all. Yeah, I totally understand. Ugh. I'm so fed up right now. If you really care about the health of your friends, get in touch, because I'm sick, and a friendly face would be nice among all the freaking scans and tests and needles and fuck knows what else I will go through this time while people try to figure out why my body is just randomly crapping out all over the place.

I'm so exhausted and disappointed right now.

Aug 10, 2014

inferior


I thought long and hard about this, and in the end, I decided that I have as much right to my feelings when they aren't so great as I do to them when they are more socially palatable. I'm going to start with something positive, and share my new artwork, which I had until now tucked away as a surprise for a friend. It's an elderly family pet, and so showing it before now would've given the game away. This represents twelve hours work and the medium is pastel pencil on roughly 100gsm white paper. I haven't drawn at this level in quite a long while, mostly because to do so before medication involved many hours of focus and concentration, and before now it would have taken me months and been so emotionally overwhelming that I wouldn't have been okay for a few weeks afterwards. The miracle of modern science, I guess. I can now knock one of these over in a couple of weeks, if I happen to be having a good few weeks. It's hope that if everything else falls down, I'll have a way to support myself, because I shared it with a few people far removed from the recipient so that I didn't blurt anything out, and the result was about 4 or 5 requests for a commission. One thing at a time. For now, I need to slow down my art projects and focus on this thesis. Two more months of significant struggles and it will finally be over and I'll have my honours degree. Then I can figure out the rest of my life, and do a little more art. Anyway, I hope that you enjoy the piece. It was a lot of work, but it also shows me that I'm not just a pointless being on this earth, and that I can actually give something (however small) back.

Which brings me to last night. I had at least seven people that were once good friends go absolutely out of their way to make me feel hated, unwelcome, invisible, isolated, unwanted... and I'd just like to let them know that congratulations, if you really were trying to make me feel like that, you completely succeeded. I smiled and was polite for most of the night, but it made a big mark on me and I am absolutely 100% sitting at home alone in tears right now. I'd like to think something positive came out of it for someone, because it certainly didn't help me. I have been clear of major depression for just under a week. My diagnosis of ADHD has pretty much shattered not only my lifestyle, but everything I thought I knew about myself up until this point. I know I have not been easy to get along with in the past. I also now know that I had absolutely no hope of control over that until now. The part of my brain that regulates emotional reaction to external stimuli and on top of that the part that is meant to be in charge of executive function is broken. This means that where most people would think things but not necessarily say them, I will blurt them out uncontrollably. This also means that I experience heightened reactions to emotional stimuli, particularly negative stimuli and especially anything aggression-related. This in combination without treatment has meant that any slightly unsavoury experience with someone has been experienced personally by me at a level comparable to someone else perhaps at 20 times the severity of the actual situation at hand. Worse, it has also meant that before I can even process it on a long-term social level, I have already reacted in a way appropriate to the extremely negative experience I am having, but not always to the situation. It has also made me incredibly gullible. I have had the best intentions throughout this, despite feeling constantly persecuted. This has often translated into friends coming to me with their problems surrounding falling-outs with others, and me ending up furious and trying to defend said friend, which in reality has just meant doing other peoples' dirty work at great personal expense, with no realisation at all that this is what was actually going on. And it's hurt people I do care about, which fucking kills me. I battle with myself every day because I really hate myself over it all, and yet I had no hope of controlling it. Until now.

Last night I went out of my way not to step on toes, I didn't drink, I let people have a chance at actually getting to know me, as I really am, for the first time in what many of them would have ever had. I got completely and deliberately socially excluded. I understand, but I wish other people understood more too. I'm going to spend the next few weeks fighting with myself to try and keep it together and not end up clinically depressed again. On top of the ADHD, I'm also diagnosed with social anxiety, auditory processing disorder, post traumatic stress disorder (thankfully this has almost gone away) and delayed sleep phase disorder. The DSPD isn't so bad at night parties, but the medication I take to regulate it means that after about midnight I am yawning uncontrollably, even I skip it for a night. Social anxiety I guess is fairly self-explanatory. I hope. Auditory processing disorder means that in loud or crowded environments, I'm effectively deaf if somebody is talking more than about half a metre from me. PTSD isn't so bad socially, but if someone makes a nasty joke around assault or other things I really don't want to mention, I'm immediately experiencing some really horrible memories, whether I want to or not. I'm not writing this because I want sympathy. Sympathy does pretty much nothing for me to be honest. The best thing I can get from people is to actually feel accepted and as if I can live some semblance of a normal life once in a while. I want people to understand that last night represented three solid weeks of fear and anxiety, and I still made the effort. I want people to understand that even though I was acutely aware of the animosity toward me, I was capable of not going on the offensive. I gave myself a chance in that social environment, and it was a huge effort to do so. Not many other people gave me that chance. Many went out of their way to make me feel unwelcome. To those that didn't, thank you. You give me hope at the darkest times.

It fucking hurts to have a serious illness, be finally treated and able to manage it enough to function socially, and only get that treatment to function after it's already too late. I am not anything like the person I have been anymore, and it doesn't matter. This is the brain equivalent of someone handing me a walking frame after both of my legs have been amputated. The main difference is that I have an invisible illness, so even though my chances of it killing me are somewhere vaguely around 1 in 5, it becomes my fault. I'm sorry if I've ever made you feel like shit. I'm so sorry. There's nothing I can do about the past and it upsets me more than anything. You're not the only person weighing up whether or not my existence is worth me being here. It's exhausting to fight on days like this one, but I have to keep fighting anyway. Writing helps, so hopefully I'll be able to stop crying and snap out of it and eat something after this. I know I'm going on and on. I'll stop for now.



Feeling - hopeless, exhausted
Listening - A Little Piece, The Jezabels