This may come across as a whinge about 'poor me, I feel so shit' the actual intention is more of a 'if I'm in such a crap place right now, imagine how much worse an awful lot of people have it'. It's also really long. Sorry.
I am sick. I have been somewhat sick for more than 20 years, for those of you who have no experience of chronic illness (count your blessings) please try to understand that it isn't even close to what it's like to catch something, even something nasty, and then get over it. There is no getting over it. And I've never been able to adequately explain to people who don't live with it how different it is.
The Spoon Theory is one of the better ways I know of. Another way I've used is this; imagine you've spent the whole weekend partying Friday night and Saturday night and then you slept in 'til mid afternoon Sunday. You get up and you feel pretty crappy right? You've probably slept through the worst of the hangover but you sure as hell don't feel yourself. You're tired, you can't focus and you just want to be left alone. There's probably some random discomfort in there too. I feel like that all the time. All the time.
Right now there's a complication for me. I have developed some other sickness. About a month ago I got what seemed like a pretty straightforward, if nasty cold, streaming eyes and nose, chest full of gunk. I took a couple of days off work thinking a bit of rest and I'd be ok - it usually takes me a bit longer than normal to recover from the lingering traces of a cold but otherwise I follow a pretty normal pattern of recovery. But this 'cold' just won't go away, and the coughing has resulted in me pulling a muscle in my chest - so I'm in pain and it's hard to breath. For a whole month so far. And a couple of days off has turned into more than 3 weeks. Which I can't afford. This is adding to an already very stressful time for me and a time when I am basically deeply unhappy with the universe in general. I have to move house inside the next month. Kitty turns 18 very soon. (this has some good points as well as some awkward ones). I'm still in the 3 months probational period at work and they must be totally thrilled at a new employee being so utterly useless to them at peak period. Thanks National, you gave them an easy out there. I have no savings. I will get next to no, if not actually no pay this month. I have the energy levels of a hibernating tortoise.
Let's roll back a little bit to the point at which I reentered the workforce after a quite long absence trying to get my health back together. I live in Christchurch, New Zealand - the broken city. It used to be the Garden City, and I'm sure it will be again eventually, but for now it's the Broken City. And when it broke in 2011 I got up to help. First with the Student Volunteer Army, where I helped out in the kitchens providing food for the volunteers and as many extra meals every day as we could throw together to take to the eastern suburbs where the most damage was. When the kitchen was no longer required I went to the Red Cross, where I started out as a volunteer entering data to help people join the dots of their lives back together. From there I was offered a job working with Earthquake grant funding, where I stayed for some time. I found that the stress of being back in the workforce was alleviated by the knowledge that I was directly helping people. I like working in Humanitarian Aid. I'm not sure how much Humanitarian Aid likes me working in it however. I can be an abrasive person when I try - though the douchebag generally only surfaces if I genuinely feel that something is being done badly. I'm not going to go into that whole kettle of fish - and I must clarify here that I'm not even slightly suggesting that anything was being misappropriated in the slightest, there was never any hint at all of anything dodgy. They ran out of excuses to keep me around, and I moved on to Neighbourhood Support temporarily to assist with a great little project that will make things a whole lot easier if there is another major (or even minor) incident in Christchurch - I hope the rest of the country picks up on this project it's a very good plan. End cryptic non reference. I want to be able to work in Humanitarian Aid again. Or as a political adviser, because I have some experience of being in shitty situations, and I have a healthy mix of compassion and pragmatism. And it seems like politics could do with more people like me.
All this got me back into the workforce; this is a good thing that I am quite happy about, but I'm finding that working a job in the private sector - while a good job for a nice company - isn't satisfying the part of me that wants to do good things in the world and that my stress levels are starting to climb again. I could probably control that if I didn't have a zillion other things all at once too. Housing New Zealand 'need' to repair the units I live in - which means that all of the tenants are being turfed out (in theory they are finding new places for us but in practice there isn't all that much to go around) it looks like they've found a new place for me, it's a nice little house that I'm pretty sure will be just fine, though it looks like I'm not actually going to get to see inside it to judge how right it is before we have to agree to take it. I can live with that; a government subsidised roof over my (and my daughters) head is a great thing and I'm hardly going to be overly choosy about it. But I've been sick for the last month. I'm not better. Turns out it may even be something quite serious. And sometime in the next month I have to move. And I won't get much in the way of pay this month. And with having had some three months ish of no pay before I started this job I have nothing up my sleeve and limited family in the city (I do have friends and I will be begging for assistance there - but this just makes me luckier than many) so now I come to the actual crux of this collection of issues...
I SHOULD be able to ask for help. But for a variety of reasons this is a complex puzzle of added stress and crap. The biggest probelm for me is that simply approaching WINZ is a known stresser. The atmosphere of the place is one of 'us and them'. I would not for a moment say that all the staff are heartless bastards, I have encountered many staff who seem to genuinely want to help and have even done things that go against what appears to be the general policy of the place. The general policy being 'give them the least you can possibly get away with' with a healthy dose of 'make damn sure they know exactly how little you think of them while you're at it'.
The general atmosphere there has caused me many issues over the years - which is not to say that they aren't at least somewhat my fault, but you see part of my illness actually makes it really hard for me to handle high stress situations, so while I won't actively lie about anything I will potentially omit the full details if I think they will result in either confrontation or humiliation. There is a culture there of only helping a little bit, the less the better, that I think is in need of a lot of scrutiny. To drag some further meaning out of the old idea that give a man a fish he eats today, teach a man to fish he eats forever.... If you give someone only the means to continue to exist at the same miserable level, then yes they continue to exist but there is no hope of improvement. No hope of them making something better for themselves and by extension making things better for everyone. While on the benefit my medication was paid for and my doctors visits - but treatment like ongoing physical exercise or therapeutic massage - both of which would likely have made my life far more comfortable and potentially made me more able to function at a 'normal' level were denied to me. Where's the sense in that? A request that rather than paying an ongoing sum for bus services, that they simply advance me for a bike so that I could get mild exercise and get places was met with incredulity. Seriously, they would apparently rather pay for my buses forever than pay for a bike once. In theory I can get a community services card still - but to be quite frank most of the time it would make so little difference that it simply isn't worth the hassle of dealing with WINZ - I did apply shortly after I came off the benefit, but I got a 'we need a birth certificate or other proof of blah blah blah...' do they seriously not hold records of this stuff? Do we live in the digital age or not? The paperwork hoops are another of the hurdles that they like to change the height on - think you've handed us everything we asked for? Think again! We need you to get this from the IRD or that from HNZ or ..... So, you would like me to approach ANOTHER GOVERNMENT DEPARTMENT, another government department that is overworked, and ask them to send me something which I can then give to you in the hopes that this time I have the right thing. Why the hell is this so hard - Government departments are SUPPOSED to be able to communicate with each other - and for the sake of getting a benefit who in their right mind would ever ever ever say 'no you can't request my information'? Seriously you idiots; if I'm trying to rip you off chances are I'm ALREADY ripping them off. Can we please work from the assumption that most people are not actually trying to rip the system off and that most people are probably not 'dole bludging losers'? This unbelievable culture of beneficiary bashing is doing my head in. If you've never had to claim a benefit; never had to ask for any kind of hand out; never had to deal with unexpected disaster in your life... I'm happy for you, really I am. I hope that huge numbers of you exist out there. But life is not always black and white, and sometimes stuff happens that is beyond our control. And very very few people who are met with hardship want it to stay that way. There are a number of apparently intelligent people out there who seem determined to believe that there are hordes of people out there who will choose to live on a government handout if they can, that it's easy street. Having to decide whether keeping the power on is more important than eating for the next couple of days is not all that entertaining. Not going to the doctor when you really really should but can't afford to, not great. Sitting in the Emergency department for 6 hours because you've been classified as non-urgent but can't afford to go to a clinic at weekend prices. Frickin' not awesome. Knowing that your kids are falling behind because you can't afford the technology the other kids have. Heartbreaking. Your kids lunchbox doesn't have much in it on Wednesdays because you've run out of food by then. Your kid is being made fun of because their shoes are a wreck but you have to save for months to get them a new pair. Your kid has to walk to school in the rain but you can't afford a decent jacket. You get a respiratory bug in winter, but you can't turn the heating up because your power bill is already too high.
So back to that respiratory bug thing. WINZ is not the only issue here, they are the bit that mostly stops me from asking for help, but for a constantly ill person they are not the whole issue by a long shot. Because there's the whole medical service - over worked doctors, over worked and underpaid nurses and ancilliary workers. Unbelievable waiting lists for diagnosis and some treatment.
I have been to my GP 5 times in the last 4 weeks. And to hospital in an ambulance once and to the Emergency Department under my own steam once. In that time I have felt like I am not really being listened to more often than not. I don't really blame these people, they don't have time to mess about with someone who 'probably just has a nasty cold'; but I know sick. I am literally always sick and need to take extra care over any extra sick that comes along. I know when something is actually wrong, if I thought it was just a cold I would wrap up warm and soldier on. On my ED visit I told the nurse at reception that I had been struggling for breath for some time and he said that it didn't sound like I was struggling for breath. I could hear the unspoken 'well you look ok' that sufferers of invisible illness are so used to hearing. I said struggling for breath I didn't say unable to breath. I AM struggling for breath, each breath in hurts because there is a pulled muscle on the left side of my chest but on top of that I'm inhaling more frequently than I normally would because I'm not getting enough air from each breath. I feel like I have a weight on my chest. Each breath is a far more conscious act than usual because I have to slowly drawn in as much air as I can. Too fast and it'll hurt too much, too shallow and I don't get enough air. Fuck you with your 'it doesn't sound like you're struggling' bullshit. You don't know what's normal for me OR how I will react to a struggle. Just because I don't need to be intubated right this second doesn't mean everything is ok. At the ED they took an x-ray, mainly to shut me up probably. There's no overt wheezing sounds from my lungs and no crackling to speak of, they've been congested for more or less the whole month with clear fluid that replaces itself as fast as I can cough it up. They took an x-ray the first time I went into hospital too. And what do you know the second one shows a change in my lungs. The hospital recommends that I see a respiratory specialist and they gave me yet another course of different antibiotics. So I go into the doctor (my regular doctor is busy so I see one of the others - I'm actually sort of pleased about this as I'm pretty sure my regular GP is now in the _believes I'm becoming a hypochondriac_ zone) when I made the appointment yesterday I was hoping it would actually just be a check up as I was feeling a bit better - much less coughing, much much less fluid - but this morning the coughing had started up again and fluid is starting to accumulate in my lungs again. So it was an actual discussion. Where I had to explain once again what was going on and why it was distressing me so much - seriously I HAVE HAD A COUGH FOR A MONTH SOLID THIS IS NOT NORMAL - She asked some relevant questions about when it's worse and when it started (which actually got me thinking and I realise the shortness of breath did not start with the cold - it started about a week before when I biked to work) and asked if I'd been given any prednisone yet - she was surprised when I said no. I had discussed steroids with the hospital but the ED doctor had said she thought it was a bad idea and could make things worse - I'd actually wondered all along if steroids should be tried but figured that doctors know what they're doing. Anyway the GP gave me steroids. So we'll see who's right there I guess. In any case if they make it worse that would rule out some things too. Much though doctors don't like this I'm not medically inept, I understand diagnostic process. Getting worse isn't always a bad thing. She's also put through a request for a spirometry test. And scared the bejesus out of me by using the magic words COPD (Chronic Obstructive Pulmonary Disorder) (please don't let it be that) (at least it doesn't appear to be cancer) (at least my heart seems to be all good). So now I finish the Roxithromycin, take the Prednisone, maybe start taking the Azithromycin after I finish the Roxithromycin depending on improvement. Continue taking pain killers as required. And sleeping pills. And wait for the respiratory people to give me test time. But I feel like if I'd put my foot down with the doctors from the beginning maybe they'd have moved faster. Or maybe they would have treated me even worse, without outright disdain instead of just failure to listen. I feel like if I could afford to just call the bloody ambulance when I felt that bad the hospital might have taken me more seriously. Also I wouldn't have had to tolerate the dickhead nurse. (BTW the rest of the hospital staff were all basically fantastic - but there's always one dickhead isn't there?). I feel like if I could afford to go private this would already be diagnosed. And I do get that private is always going to be different from public, but it seems to me that in some respects it is far too different. Sick people aren't actually up to jumping through extra hoops to get things done. My life could be about to be utterly ruined by another major illness on top of what I already have but no one is in a big rush to do anything about it. And if I do find myself needing assistance again, I can look forward to being treated like a second class citizen for the crime of being ill.
I have a number of friends who also suffer from chronic illness; between us we cover quite a few of them. I asked them if they might like to see anything added, here's what they had to say; (*ALL anonymous because I've actually been on the end of being told how crap I am for having an opinion about my illness)
"the guilt when you just can't......."
"feeling guilty because yours goes into remission but others haven't but still always waiting for it to sneak up on you."
extremely relevant to most chronic sufferers...
"...the paranoia that comes with doing ANYTHING that might make it flare up - paranoia which then makes it flare up - sucks donkey balls."
Not having a diagnosis is sometimes harder than having one
"Living in limbo over here,, waited months and years to be told right now there's nothing wrong with you but one day there will be or not but don't come see me again cause your not diagnosable. Except on days when I am."
Chronic but not terminal...
"...the offhand attitude of doctors, almost a "well it's not like it's a gonna kill you illness so you know just be happy it's not like cancer or something 'bad' " I was made to feel like dread and worry and concern for what my future 'might' hold was silly and trite."
A lot of ongoing treatments are expensive; and some of them are not subsidised despite being recognised as of primary assistance...
"It's OK if you can afford the extra expense to manage it, but if you can't it takes a lot out of you."
... so either you spend money you can't afford on things that make you feel better and are left with a shortfall that by necessity is going to come out of something else you need. A massage will provide me with roughly a week of less pain, but the cost of a massage - even at mates rates - is a weeks worth of power, or several meals for my family.
"It's for LIFE. And even if it temporarily gets better, you're just *waiting* for it to come back and kick you to the fucking curb, so it's not even necessarily much of a respite."
"Just because it flares up when we get stressed out/anxious doesn't mean it's purely psychological. "
"So many doctors who assume that because a patient is 'overweight', that must be the problem, and refuse to even consider other options or treatment."
To top that off, a number of the conversations I had also brought out the subject of doctors and specialists being deeply insensitive to the condition (or if still in diagnosis, the potential condition) drawing on my own experience - my first visit to a rheumatologist was less than stellar - his examination was less than thorough and he failed entirely at listening to the quite relevant piece of information that despite my huge number of niggling and ongoing pain problems I have a very high tolerance for acute pain. He made no effort to listen to me at all and told me it was all in my head. I'm very glad that a different doctor sent me to a pain specialist ( oh as an aside I cannot recommend the Burwood Pain Management Clinic highly enough - they do sadly have a rather long waiting list but they do a thorough work up of physical, mental and traumatic aspects of your issues and work with you to find reasonable solutions tailored to you - love those guys ). I hear stories of doctors stopping once they think they have the answer and ignoring any additional information passed on that might contradict their decision. I hear patients who have been emotionally forced to take medication they don't want to - a couple of whom lost all faith in the medical system and are now entirely 'self medicating' which is absolutely not doing them any good. Doctors are supposed to have 'bedside manner' maybe there should be a module in medical school on empathy, that you have to repeat occasionally to keep your practice up. Because it isn't just with my Chronic illness that I've seen this happen (though my weird pain threshold was a factor here) I was in hospital with tonsillitis - intitially I was treated with several courses of antibiotics because we were going through another phase of 'don't take them out'. I had been complaining of a sore throat that I described as being like gargling razor blades. I hadn't eaten in three weeks because I couldn't swallow anything - I was dehydrated because even swallowing water was hard. I several times told them that the most painful spot was further down my throat; but the arrogant douchebag doctor never listened to what I was telling him, the constant stream of 'it doesn't look that bad' 'it can't be as sore as you say it is' was depressing and debilitating; this is where it gets hilarious, if you like dark humour. One morning the doctor came into my hospital room for a check up and took a brief look down my throat then suggested that I could probably go home as it didn't seem severe enough for surgery... I got pretty mad (it was day 23 of no solid food, i was on iv fluids) and shouted at him - the sharp movement of shouting burst the infection sitting just beyond where the doctor had looked and I literally sprayed pus all over the motherfucker. Surgery the next day as infection did not go down after 'lancing'.
I also received a number of personal messages discussing things related to chronic illness, a common theme of this is related to the difficulty with continuing to work while ill. Chronic sufferers tend to need to be more careful about illnesses going around the office and need to be more vigilant about making sure they don't come back to work before they are at least reasonably better, add to this that otherwise well people come in to work despite their cold/flu/death plague without thinking that there might be people in the office more susceptible to it.
For the love of Bob don't come back at that with 'if that's the case why are you working at all'?, if you are also the same bastard who will call me a bludging wastrel if I don't work but claim a sickness benefit.
It's an odd thing but many of the chronic illness sufferers I've come across say they are less likely to catch every little thing going around the office (I myself basically NEVER catch stomach bugs and seldom get colds) BUT if they do catch something it tends to screw them (absolutely true of me).
Look I do understand the need to go to work despite your illness - but ALL of your coworkers, not just the ones with special immune systems, are susceptible to catching them; wear a mask, it won't kill you and it might save them. And workplaces that have a cubicle type environment - I know this probably sounds like some kind of horrible concentration camp mentality, but how about creating a couple of contained offices that people that are clearly sick can work from so that it doesn't spread to the whole team? I know my workplace suffers from spreader syndrome every time there is something going around. Surely it's sensible to either encourage the plague pit to go home, or separate them from the herd.
In an ideal world; if I can dream for a minute.... there would be a job out there for me where I can both help people in some way AND have a boss that understands that I can't do it all - if I stress I will fall down. Understands that I might need to avoid the plague carrier at work, or that I might need to work from home sometimes to reduce my stress load. The Red Cross was more or less pretty good for that, and Neighbourhood Support was too. I'd dearly love to be back in Humanitarian Aid. But the real world doesn't tend to be overly willing in either of those areas. Given my political leanings working for a political party like the Greens or Labour in either a consultative or an aide role would also be quite good. I have a lot of opinions on policy - and I'd like to be able to share them. Particularly Health, Social Welfare & Education, hint hint. Quite hot on the Environment and Sustainable Energy Sourcing too. Hell working for a corporation in a giving back to the community role would also be amazing, there are a lot of big companies out there who could do a lot of good with a little push. Many of them do already. I have some big ideas in that direction too.
I want to make the world a better place, if only in a small way - but sometimes I think that I'm too broken to achieve much of anything. Right now I feel pretty broken, and I feel pretty sure that this is going to screw me up massively. I hope I'm wrong, but even if I am I probably need to start looking for some sort of work that feeds my soul, and doesn't provide me with such regular accumulations of germs. Because it seems that only by keeping my soul at least reasonably content can I keep an even keel on my stress level. If anyone out there has an idea for where and how I can make that work, I'm willing to listen.