Decisions, Decisions, Part I: Employment

As my regular readers will know, at the end of last year I made the very difficult decision to leave my job as a litigation lawyer and move into a more policy-focused role without any litigation element. It was a big change, and it felt like a big loss. As much as I adore my new job, there are certainly elements of my old job I miss. Most of all, I am sad that the decision wasn’t one I could make because I wanted to, but because I had to.

Now, as my endo and adeno continue to cause trouble, I’m faced with another decision – reducing my hours.

Today, I want to talk about how you make these types of decisions. I highly recommend using a journal to write down your thoughts on this, or to talk at someone. I find it helps solidify my reasoning and makes me think it through logically and thoroughly.

Basically, there are a lot of questions to ask yourself.

First, and most obviously:

1) Can you physically do it?

Whether you are asking this about the number of hours your are working, the type of work you are doing now, or the type or work you are looking to move into, it is the most basic consideration. If you cannot get through a full day without the pain driving you to your knees, or sending you to the bathroom to cry multiple times a day, or forcing you to take serious painkillers that compromise your ability to do your job in other ways, it might be time to rethink your current work.

When thinking about this, don’t just take into account whether you can struggle through a work day. Think about whether you can get through a work day and still have the strength to feed yourself, keep yourself clean, and complete those basic necessities of life? Life does not begin and end with work, and if a full-time day in your current role results in you collapsing into bed fully dressed as soon as you crawl through the door every day, that job is not working for you. Some days like that are a reality for many people with chronic pain, but if that is the majority of your days, it is not sustainable and you will end up in a really, really bad way.

2) Are there changes you could make that would let you keep the status quo?

Now, it may be that cutting your hours is the change that lets you keep your job, but other things might work too. If you work in a standing role, such as at a checkout, and you find that painful, could your employers give you a chair? If you have an office job that involves sitting all day, could a sit-stand desk help? Would a heatpack at your desk make a difference? If you struggle more in the mornings, could you start and finish work later, or vice versa if your pain is worse in the evening? Is there any way you could work from home for a day a week?  If you have to wear a uniform, are there allowances that could be made for a stretchier waistband or more comfortable shoes?

Remember that the Disability Discrimination Act mandates people making reasonable adjustment for disability (see section 5). If you aren’t sure that what you are asking for is reasonable, or your work is saying it isn’t, consider a chat with a lawyer. Legal Aid commissions around the country have helplines for free advice, and many lawyers will give you a free initial consultation or do the first 15 minutes for free.

Please note that the above is not legal advice.

Ultimately, though, if there isn’t an adjustment that will do enough to let you stay where you are, that’s another sign it may be time to move on.

3) Can you afford it?

Sadly, this is the worst question, but it is one of those horrible realities that ultimately dictates what you choose. It can put you in an awful situation where your body can’t physically afford for you to keep working, but your family (or even just you) can’t afford for you to not. Let’s not pretend that the DSP is a lot of money, even if you can get it, and Newstart is even worse.

That being said, it is still a relevant consideration. If you have a marketable, flexible skill, there might be things you can do to supplement or create income outside of Centrelink. For example, if you are fluent (and certified) in a second language, you could pick up some translation or phone interpreter work. If you have good English skills and can work at a computer, editing or transcription might be good. If you are a superb knitter, perhaps there is an Etsy store in your future. With all of these, though, bear in mind that your income is reportable to Centrelink and may reduce your payments accordingly, so assess whether it is worth it for you.

If you don’t have a skill or the energy to market it, what else can you do?  Are cheaper accommodations an option (noting that moving is a big deal even when you are healthy)?  Are you eligible for government housing or rental assistance? Are there any costs you can cut down on?  These are not nice questions to ask, and I hate the idea that people have to go through this, but it is a relevant consideration.

If you know that you cannot physically work any more, but also have no idea how you can possibly afford not to work, speak to a disability advocate, social worker, or community lawyer.  Ask what funding options there are and what you need to do to qualify for them.  Get as much medical evidence as you can from your treating team.  I can’t guarantee that things will be fun or easy (in fact I can almost promise it will be agonisingly frustrating), or even that you will be able to find the answer, but it will help inform your choice.

What are your other options?

If you are considering a workplace change rather than unemployment or a reduction of hours, what are the options for you to move on to?  Is your prospective employer likely to be flexible?  Will the new job suit your needs?  Will you enjoy it?  Seriously, mental health is important.  You want to like your job, especially if you are spending a lot of time doing it.  Will the new job allow you to grow and advance?

These questions are, sadly, less important that the physical and financial needs, because, well, you need to be housed, fed, and capable of standing up.

 

None of the above will give you an answer, but I hope that asking yourself these questions helps make the decision a little clearer in your mind.  It may also help you justify it to other people (not that you should have to, but there are always judgemental people).

Have you had to make a decision like this?  How did you decide in the end, and do you feel like it was the right call?  Let me know in the comments.

Lifeline’s Response

A few weeks ago I wrote a letter to Lifeline about one of their Australian ads (you can read it here).  They have now responded.

The email reads:

“Thank you for providing your feedback about the Lifeline HOPE billboards.  I am so sorry that they have made you feel the way they do, this is certainly not our intention.  We had aimed to provide a strong message of hope, which is the undercurrent of all our communication campaigns.  To date, I have received plenty of positive feedback about this campaign, your feedback is the first negative, but it has weighed on me heavily. Thank you for taking the time.

The intention behind the poster was that people would see the ad and be encouraged to hold on with HOPE for whatever the reason may be that they need it.  In doing so, I had hoped to encourage a more compassionate Australia. For those in chronic pain, I had hoped to impart hope in the continuing advancement in scientific discovery and the dedicated medical teams who are working in the field. The furthest thing from my intention is to cause anyone harm or to experience isolation.

Ella, this ad placement has been provided pro bono, so I am unable to change where it is placed or how often.  I can give you the undertaking though that the next iteration of  posters I am given the opportunity to post I will ensure there is a different hopeful message.

I am sorry for the distress this has caused you, I hope my response will give you some solace.

Kind regards

Ina”

Ina is the National Manager of Communications and Public Affairs for Lifeline.

Whilst I still think the ad is deeply insensitive and demonstrates a lack of thought, and I don’t buy the “continuing advancement in scientific discovery” thing (anyone with a chronic illness knows that waiting for medical advances is about as hopeful as waiting for a tsunami in the Gobi Desert), I am gratified to have received a reply.  I also very much appreciate the apology.  I do hope that they bear the message in mind and give thought to those of us with chronic pain in future ad campaigns.

I strongly encourage anyone with the spoons to call out ableism or exclusion when they see it.  People without intimate experience of disability or chronic pain don’t even think to double check on whether their language or actions are inclusive – goodness knows I rarely did prior to actually having endometriosis and working to educate myself.  Every time we point it out is hopefully a time the other person goes away to think about it and takes the time to educate themselves and change their behaviour in future, and hopefully become an advocate for us as well.

Keep on keeping on, endo warriors.

Save These For Future Use, Part 1

Last week I shared some quotable quotes I found on Pinterest about life with chronic illness.  Visitors to my Pinterest board, however, will also see more than just funnies and sads.  I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself.  I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something.  Because this post is very long, I’ve split it into two groups of 5.

Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is.  Just skip the descriptions if you don’t need them.

1)  A pain scale we can all understand

Chronic Pain Scale

With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).

“10 – Unable to Move – I am in bed and can’t move due to my pain.  I need someone to take me to the emergency room to get help for my pain.

9 – Severe – My pain is all that I can think about.  I can barely talk or move because of the pain.

8 – Intense.  My pain is so severe that it is hard to think of anything else.  Talking and listening are difficult.

7 – Unmanageable.  I am in pain all the time.  It keeps me from doing most activities.

6 – Distressing – I think about my pain all of the time.  I give up many activities because of my pain.

5 – Distracting – I think about my pain most of the time.  I cannot do some of the activities I need to do each day because of the pain.

4 – Moderate – I am constantly aware of my pain but I can continue most activities.

3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.

2 – Mild – I have a low level of pain.  I am aware of my pain only when I pay attention to it.

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?”  My 10 is not the same as another person’s 10.  It doesn’t convey the actual effect of the pain on my body.  It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale.  And is the scale linear or logarithmic?  HOW DOES IT WORK?

Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own.  You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.

In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating.  Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5.  My face doesn’t crack, my posture doesn’t slump.  I carry that through to hospital, where I am quiet and calm externally even though I can barely think.  I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me.  I can fall asleep despite really bad pain, because pain is very exhausting.  I know that it consequently reads as me exaggerating when I say that my pain is an 8.  Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.

Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?

2) What being able to work really means

A tumblr thread that reads:

mmmyoursquid: |People love to talk about whether or not disabled people can work 

but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)

Dead silence.  Nobody cares.”

eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.  

Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

mmmyoursquid: “reblog bc the non activities thing seems really important words.”

I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person.  On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering.  Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it).  If I’m having a period of real wellness, I will join my husband in a daily dog walk.

Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries.  Basic household stuff.  If I want to have a shower or bath, I’m definitely not walking the dog.  The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards.  I tend to only socialise on long weekends or when I’m having a really, really good week.

I am lucky.  I have more “useable hours” than many people.  However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed.  It baffles me that other people use their after work hours for more than resting and watching Star Trek.  Health and vigour seem like wonderful things.  I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day.  Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture.  The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.

3) Changed lives

Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it.  I was walking a specific path that got 130% re-routed when I got sick.  And it feels like I’m in this bizarre, alternate, half baked version of my real life.  And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led.  Who would I have been?  What could I have been?  We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”

I think this is a really good way of explaining to people why chronic illness makes you sad.  You are in mourning for the person you could have been, or thought you were going to be.  I think it can be a tricky concept to explain.

I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong.  It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year.  Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy.  Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take.  Would I be making a name for myself as a good advocate?  Would children still be a distant one-day?  Would I have been able to travel the world like my husband and I wanted?

4) The in-between

it sucks too because nobody believes you. you are so alone and you have no peace no relief. At some point you even consider  suicide as your way to peace.

Image reads: “A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community.  It’s a place some of us get stuck in – the in between.  A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world.  You almost faint but you don’t.  You’re always in pain it’s relatively tolerable.  You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time.  Your heart rate is too high to be normal but not high enough to be critical.  Your BP is low but not THAT low.  You try to find answers but seem relatively okay to doctors so they don’t want to run more tests.  You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”  

This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything.  This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with.  This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.

I’ve been in the in-between – I live there, I think – and it just sucks.

5) It is more than pain

Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.  

Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this?  I think this little post does it pretty well.  I don’t think people get that it is sooo much more than just pain.  I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function.  Fatigue is the biggest one.  I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late.  I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being.  I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed.  Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas.  I couldn’t go to court or see clients, of course.

Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it.  In the meantime, I think this little tumblr post does a very good job.

 

I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.

Stay tuned for Part 2.

February Gratitude

CW: pregnancy, body image

As I mentioned in January, one post I really want to try and commit to each month this year is a list of things I am grateful for.  It is actually quite challenging.  Although I’m generally a positive person who lives life at a level I would call “content”, and only occasionally swing into bouts of terror and sadness, this is quite a challenge for me, particularly since I want to put my animals and my family on every list and I have set myself the challenge to be grateful for new things every month.  Anything that stretches my ability to be grateful, however, I suspect is a good challenge.  Practice, after all, makes perfect.

1)  fLash Lash

This may sound terribly superficial, but since we’ve already established that I am I’m going to plough right ahead anyway.  My friend put me on to this lash serum.  I was really sceptical at first because the idea of a lash serum just sounds really gimmicky to me.  However, I’ve been using it for about a month now, and it works!  My lashes are actually longer.  I tried to take a before and after, but unfortunately my before is really blurry so it’s extremely hard to see any sort of difference.  The difference isn’t huge – certainly nothing as dramatic as the pictures on the website –  but it is noticeable, and I love it.  I will definitely be repurchasing this one.  (And no, sadly this is not a sponsored post and I do not get any money from spruiking the wonders of fLash Lash).

2) Maternity jeans

I’m not pregnant, but I am now a sworn devotee of maternity jeans.  I’ve never actually tried them before, although I have written about them as I know other endo-warriors who wear them.  Now I’m not sure I ever want to wear anything else.  I tried on this pair yesterday and was blown away.

A1308027
Image description: a pair of legs wearing black skinny jeans with a rip on each knee standing in a Scandi-style room with a white crib.  There is a wooden window seat next to the legs with a cream cushion and a grey throw.

They look like jeans, but they feel like leggings and they are so soft and comfy on the belly.  They are actually quite flattering, and I say this as someone who has always felt very self-conscious about the width of her hips in leggings and skinny jeans.  With a pair of biker boots they are positively badass.  Badass comfort – what more could you possibly want?  You could fight crime and look cool in these things.

3)  New friends

Whilst I still miss my friends from my old workplace, particularly my fLash Lash friend and another lovely woman who left a few months before I did, I am delighted to have found such incredible people at my new job.  They are mostly women, and they are all wonderful – friendly, helpful, chatty, hardworking, collaborative, and always up for a jaunt to the local coffee shop or grocer.  They’ve made me feel so at home.  Great colleagues make for a great job even when the work isn’t tops, and I love the work too, so it’s great all round.

4)  My employer’s attitude to disability

Although I have thankfully not had to put it to the test in a “I’ve only worked three hours in the last month” sort of way, my employer so far seems really pro-disability and supportive of disabled staff.  We get personalised desk assessments (everyone, disabled or otherwise) and if you have a pre-existing condition they get in a physio or other specialist to do it.  Mine has resulted in a better chair and an extra plug so I can have my electric heat pack plugged in at my desk.  This means no more awkward trips to and from the kitchen every forty minutes juggling a piping hot wheat bag that will be painfully hot at first and then cool down annoyingly quickly.  This hugely increases my ability to stay at my desk working.  It makes such a difference.

5)  Cool weather

I don’t do terribly well in the heat.  I am too white for days much above 30 degrees.  I like a gentle cool breeze on a warm 27-28 degree day.  English summers are largely perfect, in my eyes.  Summers here are dry and baking and seem to parch the moisture right out of you, except when it is stormy in which case they are hot and sweaty but still leave you really thirsty and dry on the inside.  Thankfully, February has largely seen a move to more gentle temperatures.  As I write this, we’re expecting a top of 24.  Perfect.  Love it.  I know I’ll be having the opposite feeling come winter, but right now I’m happy as the proverbial clam.

6)  Nice hair

It’s not always nice, but yesterday I got a haircut and now it’s just spiffy.  It’s great while it lasts and it makes me happy.  It smells nice, too.

7)  Adventurous tomatoes

I didn’t plant any tomatoes this year.  My plants just ran riot last year and I had more tomatoes than I could comprehend, so I thought I’d give them a miss this year.  Despite this, I have four or five tomato plants sprouting in the garden, including one that is growing in the cracks of the pavement again.  They are plucky and determined plants, and I’m actually pretty excited because I do like tomatoes.  I also have a single brave chili growing in my Vegepod.  I’d forgotten I even planted chillis (did I plant chillis?  Is it even a chilli?  We’ll find out when I cut it open, I suppose).

IMG_3818
Image description: my hand, holding six slightly oval little tomatoes.  One has a green stem on it.  There is dirt on some of them and on my fingers because they are fresh from the garden.

8)  Valentine’s Day

Like most people, I’m not a huge fan of the commercialism that inevitably springs up around days like this.  However, I am a fan of the idea of love persevering, and a brave man helping couples marry in secret.  I also like the reminder it brings to have a special date with my husband and take an evening to really cherish our relationship.  We’ve endured a lot together and it’s really important for us to make happy memories too.

9)  The Done app

As you may know from my previous mention of my dairies, I’ve switched from a bullet journal to a more traditional (but also very fullsome) planner this year.  One other thing I’ve done is make my habit tracker digital.  There’s an app called Done which allows you to track 5 habits for free, or as many as you like for $6.99.  I paid for the full suite.  I’m sticking to tracking my habits far more effectively when it’s on my phone, and it is actually easier to view trends there.

Image result for done app
Image description: text that reads, “Track any goal or Habit.  Track an activity multiple times a day, week, month or year.”  Beneath that is a grey silhouette of a phone.  On the screen it says, “Done”.  Beneath that are five bars.  A partially-filled yellow one says “Wake Up Early: 3.  This week, 03/04 mornings”.  A partially filled red one says “Workout: 5.  This month: 08/10 sessions.”  A partially-filled bright blue one says “Drink Water: 3.  Today: 04/08 glasses.”  A partially-filled lilac one says, “Meditation: 3.  Weekly: 02/03 sessions.”  A fully-filled blue one says, “Less coffee: 5.  Today: 00/02 cups max.”

When you have reached your goal for the day/week/month/whatever, the bar fully fills up.  The number on the right refers to your streak of how many days/weeks/months in a row you’ve managed the habit.  It’s quite motivating and really quick to do.

10) Finally getting over this cold (I hope)

This darn cold is dragging on and on and on, as they always do when you have an immune system as useful as the male nipple.  However, I think it might finally be going away.  I can feel something almost like energy waving a tentative hand in my direction, and my headache is only dizzying instead of catastrophic.  Progress!