All posts tagged Health

Acceptance.

by admin on November 18, 2010 in Health, Introspectives, Relationships with No comments

I have had to do a lot of thinking lately. Some reflections have been conscious and voluntary, others have been somewhat forced on me… but this really is a time of major growth and personal reflection and I am at a real turning point in my life… where I really am aware that decisions I make now will impact the rest of my life.

It took some time to end my marriage, primarily because I thought I was the broken one. That somehow if I tried harder, that somehow if I just worked longer hours and poured all I had into things, tried to modify myself to fit… that I could somehow force it. The assumption that the way I felt was all about my attitude and laziness and was somehow my fault and was even fixable was a naive view, but still, I held it. That the failure of my marriage was my fault.

I tried really hard. Both of us tried really, really hard and both of us are good people who just worked too hard at something that was simply a matter of incompatibility. I didn’t cheat. He didn’t cheat. Nothing happened. In fact, it was the day I said, out loud, that I wasn’t happy and we needed to separate, calmly, that I knew that this was for real. It took me a long time, after 2 years of relentless, clusterfuck-style life-shock after epic life-shock that I came out the other side and realised that I was a different person.

I am on my own for the first time in my life. The first time in my life. I lived alone for about 8 months when Jason and I broke up in 2000, and I dated, and lived alone, but for the first time ever, I am truly on my own. And by this, I mean, responsible for myself with no-one to back me up or bail me out.

It’s scary.

And it’s weird.

Because I realised, with a fairly crushing and overwhelming force, that I have some pretty significant deficits as a functioning adult. I am injury prone, reckless and forgetful and I had absolutely no idea to what extent that was till I actually had to live with consequences, and without someone in the background, constantly making sure that I remembered things, or reminded me when I was being reckless, or could remind me of the time (I have no concept of time). In the few weeks I have been out on my own, I have cut myself, bruised myself, locked myself out of my house, lost my temper from mess, lost my temper from workload & juggling… and you get the idea.

I have always been so vocal about my independence… how I am A type. How I am a “high achiever”, how I can do it all, etc etc. And now, I realise that no-one can truly do it all without someone in the background making sure that it happens. There is no such thing as a self-made person.

I have ADHD. I have gone through a crapload of testing. I have gone through a crapload of medication trial and error. I have crippling autoimmune disease and a suspected blood clotting disorder. My autoimmune disease has some symptoms similar to MS, especially around cognitive function and clumsiness. I used to be a functioning person. Used to be an athlete. Used to… well… used to do a lot of things.

The ADHD stuff really is an umbrella for so much in my life and I have realised that I am not coping well with the everyday pressures of being on my own. Jason used to do things like plug my phone in to make it was charged. He would make sure I had my car keys or the house keys. He would make sure I remembered to set alarms, take medications. He would walk in at 11pm and tell me the time so I knew. He would clean up after the kids so that I wouldn’t be stressed out about disorganisation when I am already struggling to pay attention. I quite literally had a little fairy that would follow me around to make sure I didn’t kill myself.

I didn’t realise I even had these deficits in functioning until I was on my own and had to take full responsibility for my own life. My phone is never charged, I forget to set my alarm, or I accidentally leave my phone on silent when I set it. I am easily sitting up till 5 & 6am, with no concept about the passage of time. I am good at getting my work done, of course, but I am still in some ways struggling with the overwhelming amount of small bullshit tasks I didn’t even realise… I was being propped up.

That 8 months where I lived alone? I had a bad flu, fell asleep on my lounge room floor in front of the heater and my blanket caught fire. I lost 3 wallets and locked myself out twice. And tonight, I rang my ex and I told him that I acknowledge and appreciate the “fairy godmother” role he played without me even knowing. I also made it clear that it didn’t mean I was going back, but a mere acknowledgement that I understand.

So now, I have to put strategies in place to overcome these things. I have an ADHD diagnosis. I have health problems that prelude me from being able to be this A type person I always thought I was… so I need to come to a point of acceptance and say “hey, this is what I need to do to function”. I also need to stop seeing my ADHD issues, and my physical limitations of “becoming crippled” as a failure.

They aren’t failures, per se. They are facts of life that I need to acknowledge and work with. I need to take drugs for the rest of my life. There is no way around it. There is no point getting upset about it because it WILL NOT CHANGE. I will never be able to run a marathon or swim to Rottnest. I will never be able to go to Medical School and I need to accept it as a fact and let go. I will never be able to fully cope with the structures of the world around me because of the way I process information.

I need to accept that I am a good person. I am not a failure and my marriage ending was no-one’s fault.

I will need to accept that I cannot do it alone.

I will need to accept that I need to put strategies in place to help me achieve the things that “normal” people take for granted.

I will need to accept that I am a human being, not a robot. And that if I continue to push myself to my limits, I will die a premature, painful death.

I will need to accept that I need to be more controlled and rigid in the activities I choose. I need to learn to manage my time and my finances more effectively.

I also need to accept that even in spite of all of these strategies, in spite of all the drugs, in spite of all my best efforts… that sometimes… I will STILL fuck up. The strategies I put in place can help it to happen less often, but I will still fuck up. And I am not a failure for it.

And I need to stop being angry about being sick. I need to stop being angry about the almost $900 a month in non-PBS medications I need to take to function. It is what it is. I can take it, or not take it, but there is not point in complaining and stressing about it. I cannot afford it, but I need to find a way to work with it. And, when I need to take 2 days off because I am unwell, despite even the best of treatments, I need to be kind to myself and not let clients bully me.

I need to learn to accept my body and work within the parameters of my disordered view of my body and appearance.

I need to be more assertive and learn to say no… even when I want to do things, or give time, or offer… I keep doing it at the expense of my health, my finances (way too much free or discounted work which is stopping), my time with my children and ultimately, my life. And it just can’t happen anymore.

So, this week, I am working on getting stuff done. Allocating time for everything. Setting alarms. Filling my Calendar to the brim, everything, even the meals I forget to eat, scheduled. In the hope that I can train myself to function and leave time in it for me to actually live rather than exist. My expenses are incredible right now and I’ll be honest, I don’t know where the future lies. Child support, medication, debts & rent alone are insane. But, rather than complaining about it, I can’t change it, so I’ll need to start rolling with it, moving to accept that I need to earn $2000 per WEEK before I even start to do anything fun… and get on with finding the best way to do it.

Shiny.

by admin on July 18, 2010 in Health with No comments

I have been meaning to write a blog post about this for ages, but with the craziness of the last few months, I haven’t had a chance to write it. I was already going to ages ago, but some recent discussions with friends have made me feel like I need to say something.

It’s actually really embarrassing. And it shouldn’t be. I can talk openly about so many things. My depression and how Cymbalta has changed my life. My health and weight gain and thyroid/hormone problems and pour my heart out… and yet, because of ridiculous, baseless stigma, I am embarrassed to talk about it.

A year ago, I was diagnosed with ADD. It was such a life-changing, paradigm-shifting moment in my life – to realise that I was not lazy, or flawed, or neurotic – I just process information differently to other people around me. It’s embarrassing because so many people think (for better or worse) that ADD/ADHD is not real… or that those “true” ADD people are low achieving, wall & furniture climbing, jittery messes.

Some are. In fact, many of them are. 40% of kids with ADHD have a concurrent learning disorder. It is usually these – the boys – the furniture-jumping, skin crawling, acting out at school kids that get the most attention. It is also the predominant reason why kids who act out are mis/over diagnosed.

I was actually someone who did not believe that ADHD was a real problem. I too had a stereotype in my head of a bad parent failing to discipline their kids, using drugs as a convenience, failing to get to the bottom of the kids problems. It’s a stereotype that most people hold, and it’s often why so many kids are over-diagnosed – and a whole other subset of kids are under-diagnosed.

ADD often manifests differently in girls. They fit into the Inattentive subtype. Most of them are not hyperactive or fidgety. Many of them are not only not struggling, but are actually very intelligent. They daydream. They procrastinate. They are easily distracted and have exactly the same troubles with focus that ADHD kids do – but they often sit under the radar, and it isn’t until they are older that the strategies for getting through the school system start to unravel.

Because it’s one thing to turn up to school on time and another to manage the multiple stresses of being a grownup.

I did well in school because I was ‘gifted’ and coasted. And I’ll be honest with you, I never actually did anything. I skim read, used my photographic memory and gift for language not only through high school, but through my Undergrad degree and my Masters. And also made use of ability to hyperfocus on things I am interested in. But, when I think about it, I don’t think there was one prescribed text I read all the way through. I would say that I have a Masters in Bullshit.

I am one of the lucky ones. But it only makes sense now because of an accidental diagnosis, a whole bunch of testing, and a bucketload of reading, that all of these “personality flaws” really did just come under a banner. Drugs treat about 60-70% of it, but I have to make up the difference.

The thing about ADD is that a lot of the problems of the disorder, much like anything in the DSM-IV, occur in normal people to some degree. I mean, look at the definitions for most personality disorders and we can all relate on some level. However, the difference between a normal person and a person with a disorder is with functioning.

  • Everyone procrastinates. I am a chronic procrastinator to the point where it damages my functioning. The only thing that motivates me is fear, shame, or being broke.
  • Everyone gets bored. I cannot listen to someone talk about anything I am not interested in without drifting off. Every. single. time.
  • Everyone runs late. I consistently run late & fail to allow proper travel time.
  • Everyone gets distracted. I am perpetually distracted and lose days.
  • Everyone gets annoyed by noise. I cannot handle even small amounts of noise without it stressing me out.
  • Everyone is tired. I am exhausted because I cannot switch my brain off at night.
  • Everyone has trouble finishing things. I very rarely completed anything 100%.
  • Everyone is excited about the future. I move so quickly and am so focused on the future I find it hard to see what is directly in front of me.

Ticking clocks, traffic noise, children noise, buzzing lights, radios, airconditioners annoy me to the point where I have to wear ear plugs. I have to have software that kills all social media, all websites, email, games, and all other possible tools, including Photo Booth, when I need to read or write.

Now of course, this used to just be “Lou”. Cranky, unbearable to be around, haha-so-funny-how-she-procrastinates. The famous “death stare” (which was really that moment where I’d drift off mid-conversation). But it stopped being funny and started causing me severe anxiety and depression…. because I just couldn’t function.

And yet, I am still embarrassed to talk about it. I have heard stories of young girls in private schools being prevented from doing TEE subjects because of their ADD. I have seen the press openly mock ADHD kids. I have seen this myth that ADHD = perpetual fuckup for so long that I even believed it.

It’s really just a difference. It’s given me understanding of why I find every single day so overwhelming and stressful – why I hate my mobile phone with a passion – why things that I know I am capable of are a struggle. And it’s just because I am different. I am also gifted in many ways – my memory and reasoning and other tools I have adopted to compensate are quite remarkable.

It saddens me that there are a whole generation of people who are told they are fuckups, or have an invented disorder, or suffer from depression and anxiety, who may not feel comfortable in either seeking diagnosis or talking about it. Because yes, I take stimulants to concentrate, and as a result I am a force to be reckoned with! I am not high, I am most certainly not “speedy”, and I am nowhere near “hyperactive”. I am a fairly quiet, smart, capable woman who has a different way of processing information.

I hope that others can eventually start to speak out against the stereotypes associated with ADD/ADHD, mental illness, Autism, Asperger’s – any of these things. Because it is only when we identify ourselves that people realise things aren’t as clear cut. And they may think twice before judging, or a parent may reconsider taking their kids off ADD drugs because of misconceptions or stigma. Or they may not feel like they have failed. And everyone has something that makes them different. I have medicine and tools for mine, luckily, and as a result I can go on to study Medicine. And yeah, I may occasionally wander off, or get distracted by shiny things, but, you know, that’s fun. When it’s healthy.

So as embarrassed as I am, I am writing this here that I have ADD. I am a flake. I struggle to focus on a daily basis and that’s OK.

Who’s next?

We are all stronger than we realise.

by admin on May 2, 2010 in Cancer, Death with No comments

I always knew it was coming, and I frequently worried how I would cope when I got that call. My Grandma Chris is 79 years old in December… and as much as I hoped she’d live forever, I knew that every year she was getting just that little bit more frail and that it would come eventually.

But not like this.

My Grandma Chris is the single greatest influence in my life. She is the woman who raised me in my formative years; the woman who laughed with me when there wasn’t much to laugh about; the woman who filled my school lunch box with so much food I was able to feed half of my class. The woman who was there for me when my mother wasn’t. Who bought me my first sanitary pads, bought, washed & ironed my clothes, lent me money, screamed at me, sometimes quite mercilessly tortured me. She was always that one constant in my pretty tumultuous upbringing. She is the source of my world view – that person who keeps me humble and who I am more like than I care to admit.

So when I say “my Grandma is sick and I need to be at the hospital every day”, I get this look, like… “it’s not your Mum“. She’s just my Grandma and Grandmas are old and Grandmas die. But to me, this is not just a Grandma. She is my rock.

She is the toughest, most hard working and kindest person I have ever met. And honestly, while I knew in the back of my mind that she was getting old, and Jason and I had often had discussions about how I will deal with her death… now that I am facing it’s inevitability, I am a little bit mad at the world.

Grandma was born in Tipperary the week before Christmas in 1931. Her mother was unmarried. In Catholic Ireland. In the THIRTIES. She had 2 older brothers and a younger sister, Josephine, who died from a tonsillectomy when she was 7. Around the same time, her mother died in childbirth. Her father didn’t give a shit, so her uncle paid for her education at a convent in Cork.

My Grandma grew up in an Irish Catholic Convent during the Second World War. She worked her whole life. She worked 2 jobs, often cleaning offices. Never smoked, never drank. Never did anything but work and raise her 2 sons. She doesn’t talk much about her childhood – her memories are always positive and usually avoid nun-dodging.

She is the toughest, proudest, most stubborn old bird you could ever, ever meet. She can be ferocious – and it would be a disservice AND a lie to not acknowledge that I was often afraid of her. But holy fuck, is she funny. She has that Irish “oddness” about her, and noone can make me laugh like my Grandma. Even now as she lays in her hospital bed, we laugh.

But the thing that makes me angry is that despite all of the shit-on-a-plate that she has been handed in her life, her faith in God is unerring. God and Mary and Jesus and rosary beads and Catholic ritual are all so important to her, she is so genuinely hurt and afraid for my mortal soul. Because I don’t believe in God. I believe in God so much less now, if that’s possible, than I did a week ago.

Because now, this woman, who has led one of the most virtuous lives I can think of, is faced with either pancreatic cancer that has metastasised to her brain and lungs; a primary brain tumour that is inoperable and advanced; or a benign brain tumour that will still only give her a year tops. The woman who worked hard; never smoke, never drank, saved every single cent beyond what was necessary – lived a very humble and faithful life – is being rewarded with a painful and potentially undignified end. So FUCK God and his plan. But I don’t say that to her.

We have been waiting 8 days to get an MRI so we can find out the prognosis. The only thing that keeps her lucid is the dexamethasone, but she is on a downward spiral. How fast it’ll happen remains to be seen, but if she can she’ll come home with us. I feel that it is the least I can do. She looked after me when she didn’t have to. She never lets her guard down with anyone but me – and for that I feel privileged. I know that she is embarrassed but she lets me help her. And it is not an obligation, it’s an honour.

And I am dealing with it much better than I thought I could. I visit the hospital every day for a minimum of about 4 hours, I do her washing, make sure she’s eating, chat to her, fuss over her, remind her again that we have taken care of everything… and in a weird way I am enjoying the time I get alone with her. And now, facing her death is not so scary. Through trying to be positive for her, I end up holding it together.

The elephant in the room: it's time to talk about weight gain.

by admin on December 8, 2009 in Health with No comments

I have decided that I am going to focus on the fat thing first, because, you know, it’s kind of the most obvious, but also the most hard to talk about symptom for me. So I may as well get it all out there, talk about how I feel about my body, and also try to document this for those who will probably notice some significant physical changes in me and may feel embarrassed, or worse, judgemental, about how I look.

Right now, I am huge. IT IS NOT MY FAULT. There is NOTHING I have done to cause it, and nothing I can do about it and yes, I will be fat until they find the tumour and take it out. And as much as it scares me to say, I may even get worse before I get better.

My body is a symptom, just like the seizures, the pain, the weakness, the vision problems, the giant hands & feet, the infertility, the severe anxiety, the confusion and malaise, the tremors (which I manage to hide from people pretty well… watch my hands… :) ), the high blood pressure. The fat is a symptom.

However, up until now I was convinced it WAS my fault, so it’s been very hard to de-program from that.

So first, a little background. A few months ago, after yet another experience of complete dispossession and humiliation at the hands of an Obstetrician with a sub-specialty in Bullying (I still want to name & shame… uggggggh), I was feeling defeated and wrote this blog post. It had all culminated in me just trying to find a way to accept that I was always going to be this way, they were never going to believe me, and I was trying to forge a way forward and accept my body. Then I got sicker. A lot sicker.

But this has been happening for years. Before I was here, writing, admitting that I was sick in such a public way, and before I had figured just what the hell was going on with my crazy body – hell – before I was even a proper adult, I got fat. And I got fat fast.

I was unwell a lot as a kid, and had lots of “strangeness” – seizures, ballooning weight, severe fatigue, intermittent ADHD symptoms, things like that… and around the age of 18, living away from home, I gained 55kg over a 9-12 month period. I never really knew why, because nothing had changed. I was also at this time having seizures – between the beginning and end of 1996 I had had 4 seizures – with the worst being that New Year’s Eve when I fell and whacked my eye socket on the bathroom tiles.

And me, Miss 162 IQ with bucketloads of enthusiasm and potential and a shoe-in for any University course I wanted, could barely function. I put it down to working nights, but deep down I knew it was more than that… but you know… noone believed me. So, out of Year 12 I flunked.

And, you know, because I was pretty much alone, with no parental support, I am kinda angry that noone gave enough of a fuck to notice… because in retrospect I have been sick for TWENTY YEARS. Probably more. But, moving on…

I saw a Doctor. Because seizures aren’t normal, right?

It is actually incredibly difficult and emotional for me to write about, because I have spent the better part of 12 years being ignored, bullied and snickered at by Doctors who insist I just keep a food diary, or go for a run… or… mutilate my body… because I must be a liar. Or ask if I would like a referral to a nutritionist. When I first gained the weight, I would say “No, Doctor, I am vegetarian. No, Doctor, I don’t eat much. Yes, Doctor, I watch my carbs. Yes, Doctor, I actually walk everywhere because I don’t have a car. Sure, I have the occasional crap because I work shifts and… but… oh… it’s that occasional crap that’s causing this? Oh yes, you’re right, I am completely to blame. Sorry for wasting your time.”

And you know, lots of that, where anything other than absolute diet perfection was an out for every Doctor I saw… was a way for them to convince me that somehow, I was to blame.

And that was pretty much a pattern.

Children born, each pregnancy progressively worse (cortisol DUH), sick between pregnancies, diangosed with the fat-sick-in-chilbearing-years-catch-alls of PCOS & Depression, with every single symptom attributed to my clear overindulgences and non-compliance, and eventually being so beaten down and convinced that I was lying to myself that I got a lap band.

Which nearly kills me, due to a stray scalpel on my stomach that perforates it, causing my stomach contents to leak into my organs. And I gain 7 kilos on a diet of IV feeding, ice chips and Nilstat. Inbetween shitting myself and vomiting from the pain of a collapsed lung, of course.

And you know what?

I go to an Endocrinologist, apparently one of the best Endocrinologists in Perth, who, after all of this, reverses the PCOS diagnosis, doesn’t do any tests, and says that I should just go on a low carb diet.

IF ONLY I HAD THOUGHT OF THAT.

Oh, my mistake, they were giving me the HIGH CARB ice-chips and the chocolate thickshake TPN in that central line when I was spewing up lung fluid for a month. That’s where I was going wrong this whole time!

And that is just one example of the hundreds of times I have been treated poorly by Doctors. And trust me, every single one will be getting a letter.

So how I *feel* about the body I am in right now?

Pretty shit, actually.

When it’s not hurting, it refuses to move. When it’s not refusing to move, it’s making my life embarrassing. And of course, knowing how I really look underneath this does play on my mind, because I am treated differently to how I behave.

I feel anger towards people who make MY day harder because they actually do eat donuts and icecream and don’t get off their arses. Up until a couple of months ago I was still pretty active, and I still try to be on days when I don’t hurt. I do feel some resentment towards those people who COULD be healthy and yet choose not to be. Because I try so hard and still get lumped in with them.

I am not exactly saying that it is RIGHT to feel this way. Because you know, how other people treat their bodies is their business… but you know, I do feel that way and need to find a way to be more compassionate.

But I feel like I have made SOME headway. I don’t think my GP believes that I am sick, really… mostly because he doesn’t see my day-to-day struggles with mobility and pain and just how hard I work on not gaining weight… and you know, if it makes people more aware that fat may actually be a symptom for someone they would have ordinarily judged, then I guess that’s all I can hope to come from this.

I now need to get some sleep in before my hormones tell me to wake up again (whole other post).