2020: Hopes for the Future

Buckle in, friends. This is a long one!

I’ve written before about how the new year is always a time of hope for me – even though it is really just a Tuesday turning to a Wednesday, divided by the fairly arbitrary line of 31 December and 1 January, it always feels like a clean slate. I’ve also written about the importance of people with endo being realistic in their goal-setting. Today, I want to talk about my goals for 2020, and hear yours.

First, a brief note on my 2019 goals. I achieved two of them. They were to improve my Arabic, get my scuba qualification, and read the Old Testament of the Bible. Well, I succeeded in my scuba qualification (a few months later than planned) and will be getting my advanced qualification later this year. I managed the Old Testament with time to spare, and I’ll crack on with the New Testament in 2020. As for Arabic – turns out that is really hard to learn yourself, because trying to get any two courses, youtubers or Arabic-speaking friends to agree on the way to say something is impossible. There are too many dialects, and trying to find a consistent source for Modern Standard Arabic was a wild goose chase. However, I did start Mandarin lessons, and I can now tell you ‘Wo mao feichang shuai,’ (my cat is very handsome), although apparently you should only say ‘shuai’ about people, not cats, even though Max is a very handsome cat indeed.

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Image description: A ginger striped cat with green eyes is lying on his side on a concrete floor, looking just below the camera. There is a garage roller door behind him.

Ultimately, I think I took the lessons from my own post to heart, and the Arabic failure was because I lacked resources (which I should have researched more) rather than because my goal-setting process was flawed.

This year, my goals are a little different. I still want to finish off the Bible by reading the New Testament, which is fairly easy to plan out and achieve; it just requires a bit of commitment. My other two are more projects than goals.

Project 20 in 2020

My first project is very involved. Have you heard of the ’20 in 2020′ craze that’s sweeping the bullet-journalling community? Basically, you set 20 goals to complete in the year 2020 – bonus points if they somehow incorporate the number 20 (e.g. 20 days with no social media, 20 days of walking 20k steps or more, etc). Now, trying to do 20 sets of 20 things isn’t realistic for me, so some (most) of my goals are per month instead. I’ll be trying the following:

  1. Publish 20 posts on this blog!
  2. Reading 12 types of books I don’t normally read (e.g. I’m a fantasy/sci-fi girl, and rarely read autobiographies);
  3. Reading 20 books by women (my first list was a little male-heavy; this list is also diverse in terms of ethnicity and genre);
  4. Watching 12 movies I don’t normally watch (I’ve committed myself to such cinematic horrors as a gangster film and a sports film – two genres I would never normally touch);
  5. Listen to 20 new artists (I felt like 20 works for this category as it is pretty easy to listen to music – please leave some recommendations in the comments!);
  6. Go on 12 walks around the local region;
  7. Go on 12 adventures (a coast trip, more scuba, a day at a museum, laser tag – anything fun and different);
  8. Go on 12 dates with my husband;
  9. Run 20km per month (or swim 4km, if running isn’t possible);
  10. Go to the gym twice a week;
  11. Save 20% of my income;
  12. Write monthly emails or letters to my grandparents;
  13. Write monthly notes to my sponsor child;
  14. Bake 12 new things;
  15. Cook 12 new meals;
  16. Complete 12 art projects;
  17. Do 12 pieces of calligraphy;
  18. Complete 12 pages in my beautiful Citrus Book Bindery journal that my wonderful parents bought me for Christmas;
  19. Get rid of 20 items of clothing (that is a net reduction – if I buy 20 new things and get rid of 20 old things, that doesn’t count – I’d have to get rid of 40 old things. Getting rid of can mean selling, donating, re-purposing, or binning only if it is beyond salvation, as a way of trying to live green).
  20. Finish one computer game per quarter (I’m terrible for buying a bunch of games and then just not finishing them, unless they are Batman or Tomb Raider).

Now, this may be an epic failure, because on the face of it, it breaks a lot of the rules I set out in my goal-setting post. However, take this list with a pinch of salt, because it has two important rules.

  1. My health comes first. If trying to complete these things starts to cause my health to decline, everything else takes a backburner, no guilt, until things are back where they should be.
  2. Even if I remain in perfect health all year, this is a list to try, not a list I will berate myself for not completing. The aim of this list is to be open-minded, try new things, have adventures, and see if I can be a more well-rounded, better-educated person with more experiences at the end of it. I want it to make me into someone who doesn’t put things off for another day (which tends to result in them not getting done ever). If I manage that, this is a success, even if I don’t complete a single category on this list.

I want to do it all, but if I can’t, I’m not going to be unhappy with myself. I will only be unhappy with myself if I don’t even try.

You’ll notice I haven’t put traditional New Year’s guilt goals in there (lose 20 kilos, for example). This list is about making me better and happier through new experiences and good habits, not about guilt.

Project Better Life

My second project is to take control of my life again. Last year, my goals related to singular events that I wanted to achieve, and once achieved (or abandoned) I kind of just drifted along a bit. This year, my focus is broader.

What does reclaiming my life look like? Well, it involves the following:

  1. Using my time productively: instead of mindlessly scrolling the internets or watching something on Netflix I’ve seen a hundred times before, I’m going to use the time in furtherance of my other goals. That might mean reading one of the books from the above list, using my commute to listen to Audible or a new artists,, spending time with my husband, or going to a gym class. My time is valuable and could be used for so many good things. I don’t want to waste it any more.
  2. Follow the two-minute rule: if a task can be done in two minutes, do it. That means no more floordrobe, breakfasts prepped ahead of time, etc.
  3. Being consistent and persevering until I have good habits: I’m going to set myself tasks  and schedules(flexible and subject to illness) to see what sticks and what I can keep up with. For instance, I wake up earlier than my husband, so if I can get a load of laundry into the machine on Saturday mornings before he does, I’ll actually have my favourite undies clean and ready to go each week instead of having to resort to the Emergency Knickers (you know, the ones that aren’t that comfy and maybe give you a wedgie but you just can’t justify throwing them out so you shove them into the back of the drawer and wear them when the other ones aren’t available. I’m sure I’m not the only person with this sort of underpants division). Once things are automatic, they’ll be easier to keep up.
  4. Acting mindfully, deliberately, in pursuit of my long- and short-term goals, and in support of my mental and physical health. I want the choices of what I eat, what I use my time for, what I do at work, to be deliberate and take me in a specific direction. I am going to check back in with my goals regularly to make sure I stay on track.

The reason for this project is simple: endo – any chronic illness, really – robs you of control. I already know that when I have a habit, it is easier to keep it up when I’m lacking in spoons and just want to collapse. I know I sound like a self-help book right now, but I’m feeling positive. I want to ride this wave of energy through the first quarter of the new year and into new, good habits. Once I hit the quarter-year crisis, hopefully I’ll be fore-armed and be able to keep things up on a more long-term basis.

You’ll notice none of the above relate to my endometriosis specifically. You just can’t plan for or control chronic illness. All you can do is deal with it as it happens and keep your mental health strong.

Once again, I’m using my Leaders in Heels ‘Make It Happen‘ planner as a goal-setting tool. I’m not sponsored by LIH or anything; I just really love this planner. It has a great layout and devotes a heap of space to breaking your goals down and referring back to them.

What are your goals and plans, dear readers? What do you want to change this year, if anything? Do you set goals? Once again, please drop recommendations for new music in the comments – new adventures too! I’d also love to hear your thoughts on what you want to see in Bubbles in the Brain this year. Do you have questions about endo you want answered? Topics you wish I’d write about? Let me know.

 

2019: Lessons Learned

It’s been a long time since I’ve posted anything. The reason is very simple: life got in the way, as it often does. In September I was so healthy I was too busy living life to blog; in October and November I was too sick. In December I was just too lazy.

Now, however, I am back, and with a goal of publishing 20 posts this year. Let’s see if I can stick to it – 20 posts for 2020. Expect something roughly every fortnight, barring disasters.

I hope, my dear readers, that you have been well and that endo has not kept you from having a peaceful, enjoyable Christmas break. I’ve been fortunate that mine has been behaving pretty well of late.

Today, I want to kick off the new year by looking back at the old one, and recapping some of the thing I learned during it. You can also read my lessons from 2018 here. Hopefully some of these lessons will also be useful to you. Some might be totally different for you – if your experiences are different to mine please leave a comment below.

1) Big decisions can bring big rewards

At this time last year, I had quit my old job as a litigation lawyer and was waiting to start my new one as a policy lawyer. In other words, I was moving out of the world of appearing in court and arguing about the law and into the world of writing and interpreting it. It was a huge and scary move, but it was so worthwhile. I love my new job; I have learned fantastic new skills, come to appreciate an area of law I never would have previously considered, and met amazing new people. Most of all, my health has benefited enormously. Away from the intense stress of family violence litigation and in a more disability-friendly workplace, my endo pain reduced and I was able to recover when I needed to without pressure or condemnation. If you are considering a similar move, I encourage you to read my post on making this kind of decision.

Another huge decision was coming off the depot shot. I wrote about what factors to consider in making a decision like this last year, and that it how I made this one. Remember that dropping meds may not be a success story for everyone, so think carefully before doing it.

I transitioned to the depot (aka leupron or leuprorolin) after my Zoladex went wildly wrong. Depot was pretty hit and miss for me – it worked well some months, and did nothing at all others, leaving me jumping in and out of menopause like a frog with hot flushes, causing my mood, sleep cycle and weight to go wacky. After it failed yet again in November, I threw my hands up and said, ‘enough is enough.’ I didn’t get my next shot. I was expecting disaster, but instead, things got better. My pain is massively decreased and my weight and sleep patterns are returning to normal. Combined with dietary measures, I’m feeling better than I have since my first operation. I don’t know if being on it gave my body the rest it needed or what, but I’m grateful.

Despite ongoing fears, I plan to keep making big decisions with courage over the next year.

2) There will always be people who refuse to understand

Whether they be doctors, family, annoying strangers, or even other members of the endo community, there are plenty of people who will steadfastly refuse to accept what they are being told about endometriosis if it contradicts their own experience or worldview. I see this constantly in the Australian endo community – sufferers regularly report their experiences with unsympathetic family, colleagues and medical practitioners. I’ve experienced it before too. Try and gently educate if you have the energy, but if it becomes clear that you are banging your head against a brick wall, just leave it. You can only hope that enough people saying the same thing as you will eventually change their minds. In the meantime, your precious energy is better spent elsewhere.

3) We can’t hold ourselves to the same standard as healthy people

By this, I’m not saying we have a license to be awful people. What I’m saying is that we can’t always manage the same activities, and that’s ok. We won’t always get the same results even if we do manage, and that’s ok too. We are not in competition. We can only try our best, seek balance between our health and the rest of our lives, and accept ourselves as enough. Giving our all may not look the same as a healthy person giving our all, and it may cost us much more to do so; don’t try and force yourself to keep up if you can’t.

4) There are so many other illnesses

I hadn’t realised the number of other chronic conditions that so many endo-warriors deal with in addition to endo – fibromyalgia, adenomyosis, chronic fatigue, vaginismus, interstitial cystitis, and polycystic ovarian syndrome, to name a few. We are sickly, sickly children.

We are also more likely than most to suffer the various reproductive cancers – particularly ovarian cancer – because the symptoms are so similar to those we already have that we often don’t seek a diagnosis until it is too late. I’m going to write more on the different reproductive cancers and some of the other secondary conditions I haven’t covered yet a bit later in the year; keep an eye out.

5) Just as people can be cruel or ignorant, they can also be very kind

Not everyone we meet will understand endo or be nice about it, but there are some absolute gems out there. You hear stories of people with endo collapsing at the shops and being helped by random women; of people getting caught short with unpredictable periods and angels with spare pads or tampons standing by; of sufferers with no family being hospitalised and visited by other endo-warriors bearing snacks and magazines. In my own life I have my family and friends, who will do anything to help me when they know things are getting bad.

When you see that kind of beautiful act, treasure it; do what you can to spread it further. The world can seem like a really dark and awful place sometimes, but those little moments bring hope and comfort. In the words of Cinderella: have courage and be kind.

So, those are the main lessons brought home to me in 2019. What did you learn, or have reinforced? Let me know in the comments!

August Gratitude

August has slipped away and we are finally into spring! Before I can celebrate the joyous arrival of that lovely season, though, I want to talk about what I was grateful for in the final month of winter.

I’m sorry it has taken me so long to do this.  I ended August on a bad note, with a solid two weeks of pain that eventually got so horrific I was forced to take a week off.  It’s always super depressing that happens, because you start questioning the effectiveness of your treatment and eventually spiral down into deciding that nothing will fix you and you are doomed to be eaten alive by your own uterus.  It’s hard to be grateful in those circumstances and it has made this list a little harder to complete.

Nevertheless, grateful I am and grateful I will continue to be.  Here’s what about.

1) Having a warm home

I used to volunteer in a men’s homeless shelter overnight in winter. You’d sleep on the ground in the church hall we were given for it, inside a sleeping bag. Even with my cosy sleeping bag, it was chilly. Of course, I only had to do that one or two nights a month. For the men that utilised the shelter, they had to sleep in those conditions or worse every night.

Burning Firewoods
Image description: a wood fire burning in a brick fireplace.  

Australia can get cold at night. Really cold. Dying of exposure is a possibility. Each winter I am grateful for four walls and a roof, a warm bed and fluffy pyjamas.  I am glad that my pets are also safe and warm around me.

2) Wonderful work friends

As I noted in July, our team grew again, and I’m delighted that our new additions are, like my existing colleagues, smart, capable, hard-working, kind, hilarious women that I can have a good laugh with even whilst we are working under heavy pressure to produce good stuff. With or without these ladies, my work would be interesting, but they make it delightful. People really do make a workplace.

3) New suit

It’s red. It’s fabulous. It was on sale. Enough said.

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Image description: a blonde white woman wears a black dress with flowers printed on it and a dark red blazer with a waterfall front.  This is the jacket from my new suit.  Image and jacket from Review Australia.  

4) Blue skies

You know those windless winter days where the air is still crisp and cold but the sun is beautifully warm and the sky is a perfect rich blue without a cloud in sight? Australia does those days well. I love them, and the end of August gave me plenty of them.

5) Gorgeous sunsets

The sunsets really started to get pretty in August. They’d be gold at the horizon, fading up through pink, into violet, through all the shades of blue. The city skyline and the hills around were silhouettes perfectly against it. It was all just super pretty.

6) Two straight weeks of work

Sure, I ended August with a horrific flare-up and the two weeks leading up to them involved a fair amount of pain, but I managed them at work and I achieved good stuff.

7) Age of Empires

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Image description: computer graphics showing some short wooden towers and walls on either side of a path.  There are trees and cliffs to their right.  Further to the right is a stone house and a stone tower, looking over the coast line.  In the very blue sea is a dock and three little ships.  The text across the picture reads, “Age of Empires II: HD Edition.”  

 

I got my first copy of AoE in a box of Nutrigrain. It was great. My sister and I soon acquired Age of Empires II: Age of Kings. We were thrilled when Age of Empires III came out. It’s fun, it’s pretty, you get to fight the French. I went on a bit of a binge during August and enjoyed not only the game, but the nostalgia too.  There are many different nations to play as and against, each with their own distinct characteristics and style.  Also exciting: apparently there is going to be an Age of Empires 4 released next year.

8) B12 spray

Image description: a white spray bottle with a blue label that reads: B12 Liquid.  

I take a LOT of vitamins. Between the IBS and the endo and the various deficiencies, I have to swallow a lot of tablets. Not only is a sublingual spray a more efficient way of absorbing B12 (particularly important for vegans), it’s relatively tasty and it is one less pill to have to force down your throat.  It’s actually a big relief for me to find a way to take this important supplement without having to fight nausea to do it.  I use this bad boy: https://www.discountepharmacy.com.au/bioceuticals-b12-spray/

9) Tofu

Maybe it sounds like a silly thing to be grateful for, but I really am.  It’s such a versatile and delicious food.  It’s really quick to cook and it doesn’t cause me digestive issues.  It’s very nutritious, with plenty of protein and surprising amount of iron for a such a pale, flabby-looking food (I always associate iron with dark colours like kale or spinach).  I particularly like it as a scramble (crumbled into a frying pan with oil and whatever herbs, spices and vegetables I fancy) or fried in a coating of salt, pepper and flour.  Yum.

10) My parents

Once again, my parents helped me out during my week of sickness.  My mum came out twice, brought me some groceries and did some of my laundry, and my dad came out once, drank my tea and then had to leave because he’s allergic to my cat.  Having help with the chores went you can’t stand is just the biggest weight off your mind – not only does a cleaner space make my mental health better, it relieves the pressure on me and on my husband, who of course otherwise has to pick up the slack when I’m sick.  Even just having company makes a big difference – being home sick is a lonely, isolating experience.  You feel a bit unloved and a bit useless.  Company helps relieve that.

 

What were you grateful for in August?  Anything amazing happen?  Did you have to struggle to find the silver lining in the clouds?  Let me know in the comments.

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.

One Giant Leap for Mankind: 50 Years On

As anyone who has been paying attention to the news will know, this year – one week ago today, in fact – is the 50th anniversary of humankind first landing on the moon.  I didn’t write about it a week ago because I was at the coast, pretending to be a mermaid and not writing anything, so I’m writing about it now.

I’ve been fascinated by space for a very long time.  I’m a huge fan of Star Wars, Star Trek and Doctor Who.  I’m currently rediscovering a love of H G Wells.  I love Glynn Stewart’s many space adventure novels.  I think Firefly was a work of art (let’s not talk about Serenity).  One reason I really, really love it – particularly Star Trek – is because it is one scenario I can imagine myself in where endo might conceivably not be an issue.

Think about it.  All the books, movies, tv shows and games set in the past, present or near future might be fun to imagine yourself in.  I love to think how I’d survive if I were suddenly whisked back to Jacobite Scotland a la Outlander, or whether I’d make it through more days than my character on his desert island on Stranded Deep.  I used to think I might have a fighting chance in a zombie apocalypse (or, at least, I might not die in the first wave).  Now, however, my imagining is usually interrupted with the thought that I would be useless and probably die as soon as my meds run out.  First my Prostap would go and my flare-ups would return, and then my implanon, and finally my mirena, and my periods would come back and I’d either get eaten by a shark or offed by the girzzled band of zombie fighters for slowing them down.

But in Star Trek?  I’m sure there’s a hypospray that will keep my hormones in line, even if a cure for endo hasn’t been definitively found in the 24th century (which I suspect it will have been).  Even if I still had to suffer flare-ups, my replicator could be programmed to provide all kinds of delicious, low-FODMAP vegan meals without me having to stand and do any prep, and my (absurdly spacious) quarters would be at the exact right temperature.  My uniform could doubtless accommodate a built-in heatpack (to be clear, I’m talking about Next Gen on here, not TOS with its classic mini-dresses).  It’s very easy to imagine myself in that world without thinking “Oh, hey, I’d really struggle and would end up dying a horrible death.”

Returning briefly to the realm of reality, it does make me a bit sad that I will never, ever be one of those lucky, talented people that blasts out of the confines of our atmosphere and explores space.  I wish I had some kind of mad physics- or maths-loving brain that would make me a useful cosmonaut, or even one of the incredible ultra-nerds of NASA.  What a privilege to be able to work on the space programme!  How fantastic it must have been to be a part of that!  Still, I’m really grateful that those ultra-nerds did what they did (and continue to do).  To me, they are representative of the most positive aspects of human curiosity, intelligence and the sense of adventure – boldly going where no one has gone before, and inspiring awesome tv shows in the meantime.

Now we just need to make endo-research as cool as space travel and entice lots of clever and/or wealthy people into doing and/or supporting it.  And then maybe we can have the first person with endo in space (although we might want NASA to find a safe way to deal with menstrual waste first!).

 

June Gratitude

I feel like I’ve prefaced every monthly gratitude post recently with a note that it’s been a hard month.  Once again, though, it has been.  My Prostap injections have stopped working – my doctor thinks this one was a dud – so I’ve been dealing with a solid month of pain accompanied by a really icky cold (lots of lovely mucus – yay!).

I think this makes it even more important that I take a moment to stop and think about the things this month that I am grateful for.

1)  Cake!

I successfully baked three really nice cakes this month.  One was a packet mix, so I can’t be too proud of it, but seriously, if you want a deliciously moist, rich, vegan chocolate cake, just add a can of Coke to the stuff in Betty Crocker’s Devil’s Food Cake and bake it, and voila, instant deliciousness.

I also made this funfetti cake from It Doesn’t Taste Like Chicken.  Unfortunately, my sprinkles vanished into the cake and just left little blobs of yellow behind, but the cake itself was delicious, and I’m really proud of the rainbow icing.  Sure, it has some holes in the bottom layer, but it’s the first time I’ve ever tried to get fancy with buttercream, so I’m proud of myself.

Rainbow Cake (2)
Image description: a violently rainbow cake with colours ranging from red at the bottom through the rainbow to purple at the top.  It has rainbow sprinkles on top and is sitting on a silver plate in a fridge.  Please excuse the shocking photography – the bright light in the fridge was the only place I could really capture the intense colour.  

My third cake was for my mother’s birthday, and was the tastiest of the three.  I used this incredible, zingy lemon cake recipe from Lazy Cat Kitchen.  I cooked it slightly too long but it still turned out really well – very soft and fluffy on the inside and soaked in sweet lemony flavour.  Definitely a “make again”.

2)  Basketweaving

My workplace celebrated Reconciliation Day last month by holding Aboriginal basketweaving classes for employees, taught by an Aboriginal woman who travelled out on country to learn the techniques and is sharing them with us.  It’s really relaxing and it’s nice to have something to do with my hands when I’m watching tv or listening to an audiobook.  I’m trying to make a basket for Max, which is a little tricky because he is a) fat and b) prone to eating the materials I use, but I’m pushing through.

3) Max is ok

IMG_7842.jpg
Image description: a fluffy ginger cat with green eyes and a slightly angry expression.  That’s Max.  He’s not actually angry, he just has a resting bitch face.  He’s so chill that today he let me pull him down onto his side and rub his tummy for a good ten minutes.  For many more Max pics follow my instagram – OffBalanceSpinningTop.  

Last month I wrote about how Max had to have dental surgery.  He’s all recovered from that now, but gave me a scare this month when I found blood in his urine.  After a rushed vet visit and some medication, it turns out he probably just had sterile cystitis, and is back to peeing normally (i.e. not on all my nice blankets) and no longer in pain.  That’s a huge relief.

4)  A good boss

Chronic illness is terrifying, particularly when you love your job and want to earn the respect of colleagues you admire through hard work, but have to take off unreasonable amounts of time due to situations like my current Prostap issue.  I am still super stressed about it, but less stressed than I would be if my amazing boss wasn’t so good about this whole poopy situation.

5) Fulfilling a goal

One of my three goals this year was to read the Old Testament.  I have officially finished it.  I’ll admit, it mostly wasn’t thrilling.  The prophecy books (Isiah, anything after Jonah) are mighty confusing unless you have some reference material to explain what the heck they are talking about.  Lots of doorways getting measured and people dying of famine and then everything getting better and people being happy again.  I really enjoyed the books with strong female characters, though – Ruth, Esther, the early parts of Judges – and some of the books, like Lamentations, have some truly beautiful imagery.  There’s a lot of good stuff in Psalms and Proverbs, too.

Anyway, I’m proud of finishing it.  I’m on track to fulfil Goal 2 (getting SCUBA certified) next month, even if I’m doing really poorly with Goal 3 (learning Arabic).

6) Pretty dresses

Image result for review australia chateau floral
Image description: a beautiful brunette girl (not me, although I am also a beautiful brunette girl) in a burgundy dress with purple and pink flowers on it.  This is Review’s Chateau Floral dress, and I love it.  Photo by Review.  

This month has been all about the comfort clothes.  Maternity jeans, turtlenecks, flowing trousers.  Today, I realised I haven’t worn an item of clothing just because I love it for a very long time, and that makes me sad.  So, I made an effort, grabbed one of my absolute favourite dresses (pictured above), and wore it just because.

7) Clean water

It’s a simple thing to be grateful for, but it’s so important.  Clean water is one of the greatest guarantees of health (in terms of freedom from things like cholera, anyway, if not from endo) and is vital to sustaining life.  It also tastes good.  If I’m thirsty, I can just turn on the tap.  People in Flint in the USA still don’t have clean water after years of complaints, and that is in the very developed world.  People in other parts of the world have to walk for miles to get water, and today I literally bathed in litres of it.  A few weeks ago, I went for a swim in a 50m pool.  That’s more water than some people will ever see.  Even in Australia, animals and people suffer every time there is a drought.  Clean water is something we cannot take for granted or be sufficiently thankful for.  Clean water is life.

8) Assassin’s Creed

Image result for assassins creed 2
Image description: the torso and head of a man in white Renaissance clothing with a red fancy sash and silver belt, a brown cloak and two knives sticking out of bracers on his wrists.  The text says: Assassin’s Creed II

I finished the first Assassin’s Creed game some time last year after literally years of procrastinating, and I loved it.  This month, after slightly less time, but still a lot of procrastinating, I finished the second one.  The first one sees you play an Assassin in the Middle East during the Crusades; in the second, you are in Renaissance Italy.  Both games are heaps of fun and absolutely stunning.  Seriously, the detail that goes in to creating the huge cities that these games are set in makes them worth playing even if you don’t want to stab lots of bad guys and save innocents from corrupt guards.  I so badly want to go it Italy now.

9) One year

I’ve been writing this blog for one whole year now.  I’ve been up and down with it – it’s really hard when I’m not well, because my motivation and creativity take a big hit – but I have stuck to it.  I have more than 100 followers, and I’m super grateful to each and every one of you.  I can’t tell you how happy it makes me when I see someone like an article.  Please keep on liking and sharing, and let me know in the comments if there is any particular content you want to see more of.  I want to keep this blog relevant to the experiences of people with endo, adeno and chronic pain, and it really helps me to know what people want to read.

10)  Today

Sundays are really difficult for me, because I spend a lot of time stressing about how I’m going to get through another week, and how exhausted I will be when I have to get up at 6am, and whether I’ll even be able to fit into my clothes tomorrow.  Today I woke up especially depressed and I kept getting worse.  However, I managed, largely thanks to my husband, to pull my socks up (actually I wore tights, but whatever), put on my pretty dress and do my face and hair, leave the house, breathe some fresh air, buy the vitamins I’ve been neglecting, and eat some good food and drink some delicious hot apple cider.  It was really, really hard to actually do that, but I did.  I’m proud of that.

 

What are you grateful for this month?  Have you baked anything delicious lately?  Share in the comments.

The Financial Impact of Endometriosis

Last year, the SBS programme Insight did a segment on endometriosis, estimating that it costs Australia at least $7.7 billion per year.  Our problem uteruses (uteri?) are bad for the economy.

The impact at an individual level, though, is arguably far more devastating.  Not in dollar amounts, perhaps – the idea that I would ever lose out on $7.7 billion dollars is estimating just a smidge high – but in terms of what it costs us as a percentage of our expenses.  Now, as another financial year winds to a close, seems a perfect time to discuss that.

(I want to apologise if I’m slightly incoherent.  I have another cold and I’m muddle-headed, dizzy, nauseated and slightly rambly, and my hands keeps trembling so I’m making some exciting typos.)

I don’t have super statistics about what endometriosis costs each sufferer.  I can only really talk about how it effects me, and the anecdotes I hear from others in the community who mention missing work, having to quit jobs, etc.

For me, missing work is by far the biggest impact.  I burn through any paid sick leave I have extremely quickly.  If it isn’t endo pain, it’s an infection or illness because my overburdened immune system can’t stand up to even the most pathetic germs.    That means that on days I don’t work, I don’t get paid.  Currently, my Prostap injection has failed me, and I’m home sick yet again because I can barely stand up and I’m so swollen that clothes actually hurt.  Also, the abovementioned cold.  I’ve made it to work one day this week.  That means I’m looking at another pay cycle at effectively half pay.

Of course, for sufferers who can’t work or can only work part-time or in casual roles, the financial impact is even worse.  I’m very lucky to have a good job with a good wage.  Many people can’t say the same.  Some have the fight of their lives to try and get the Disability Support Pension, which is not much, and have to live off Newstart in the meantime, which I understand is considerably less and puts you below the poverty line.

Regardless of whether I get paid or not, the cost of my Prostap is $358 every six weeks.  I’m fortunate enough to have private health insurance, so I get $100 back.  (It’s worth noting that Prostap is on the PBS if you have prostate cancer, so it will only cost $48 then.  If you have endo, no PBS benefits for you).  Add to that the cost of the hormone replacement therapy, which is $50-$100 monthly depending on the pharmacy.  I have actually stopped taking it because I didn’t find it that helpful, but it was an additional cost for several months.

Then, of course, there is the cost of surgery.  If you pay privately, you are looking at thousands.  If you go on the public waiting list, you could be waiting over a year depending where in Australia you are – more time with more pain and therefore more lost income and more money spent on pain management.

In between surgeries, there are multiple appointments with doctors and specialists.  Bulk billing doctors are a treasure, but if you can’t get those and don’t have a healthcare card, it’s usually at least $40-$50 per visit after the Medicare rebate.  If you need to keep going to the doctor to get medical certificates, new prescriptions or things like injections (such as Prostap or Zoladex) that adds up very quickly.  I’ve put off doctor’s visits and even buying medications before because of the cost.

Tax time is generally the only time you get a break.  My absences usually result in me being overtaxed and getting a bit back at tax time, but that’s one lump sum a year.  If I get anything back this year, it will be going straight to paying off some debt, and anything left over I will spend on wild items like moisturiser, because I’m currently scraping dregs out of jars rather than spending out on something like that that I view as a luxury, even though my face might crack and fall off without it.

I do want to finish on a slightly more positive note, though.  These are some methods I have used to try and minimise the impact on my savings.  They won’t work for everyone – you have to a) have savings, and b) have enough to put into them – and I’m by no means a financial planner, so please don’t take them as gospel.  I acknowledge my privilege here in that I am relatively well-off, and I beg you not to try and do things you can’t afford because of the idea that if you aren’t saving you’re a terrible adult.  If you can’t afford it, you can’t afford it.

1)  I budget by percentages and priorities, not dollar amounts

I carefully budget what my pay will go towards.  However, because I can’t guarantee I’ll be getting the same amount each week, I allocate percentages rather than figures.  If I say I have to put $500 towards savings a week (a pipe dream even at full pay) then I’m going to be struggling when I need to pay for petrol and groceries but only got paid $600.

My biggest percentage goes towards the mortgage, with smaller percentages for my savings account (to be touched only as a last resort), my emergency account (to be drained before I touch my savings but only if I have nothing left in my spending account), and charity (I can’t engage in much else in the way of service or activism, and giving to charity is a vital part of helping me feel like I’m making a difference despite that, so it’s non-negotiable).  I budget a particular percentage for paying off debt, but since it is to my parents and they are Very Nice People they are happy for me to not repay them if something else comes up like a vet bill (thanks Max) or unexpected medication or a small pay, so I have a little leeway that fortnight.

2) I quarantine my savings

As described above, I have two savings accounts – one for actual savings, which gives me a higher interest rate as long as I make regular deposits and don’t remove money from it, and one for emergencies, which has lower interest but allows me to remove money as needed.  I top both up at each pay with the same amount, but will always take from my emergency account first.  If I don’t have to take from it, great, I’ll earn more interest than I would with the money in my spending account, but if I do, it’s there and not being spent on other stuff.

I have absolutely got to the point before where I’ve blasted through my spending account and my emergency account (usually when big bills coincide with big medical issues) and touched my savings before, but this helps minimise the chances of that happening.

Of course, if you don’t have the income to split like this, this may be a terrible idea.  If I get paid a really small amount, I will skip putting stuff in the emergency account and put it in savings instead.  If I get paid even less than that, neither account gets a dollar.  You’ve got to be flexible with any system and put the money where it needs to go.

3)  I pay attention to my super

I was lucky enough to attend a financial planning seminar for women in law last year, and one thing that was emphasised is that women, particularly young women, don’t pay enough attention to their super.  One the poorest demographics in Australia currently are old women, who often have very little or no super and who have not taken an interest (or not been allowed to take an interest) in their own financial matters.  You should always be in involved in your own finances.

In terms of super, the advice given was this – if you are with a solid super fund, which most industry funds tend to be, and you are many years away from retirement age, don’t be afraid to put some of your money (not all!) in the higher risk option for your super fund.  The risk is relatively low, because it isn’t all your money and you are many years away from needing it, and the payoff can be high.  As you get older, move it all into lower risk options.  This will hopefully maximise the amount you get at retirement in a way that doesn’t expose you to unnecessary risk.

I stress that this was advice given to me by financial planners, not something I’m just saying.  It is entirely at your own risk if you do this and I’m not personally advising it (or advising against it).  It is something I do, however, because I want a good retirement to make up for the difficulties I’m having now.  That’s when I imagine I’ll actually have the health to do fun stuff, and I’d like to have the wealth to back it up.  Don’t sue me if doing this fails for you.

4)  I do my best not to feel guilty when I can’t meet my financial goals

So, this one is no use as a savings tip, but it is super important.  Financial pressures are real and they suck.  Often we have to give up on things we want and abandon or delay savings goals in order to pay the bills or buy food.  I avoid articles about “how I paid off all my student debt and owned seventeen houses by the time I was 25!” because they are usually a) written by someone with no idea how privileged they are and b) make me feel bad, not motivated.  You really can only do your best.

 

How has endo affected your finances?  How do you do your best to combat it?  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.

Sorry for Being a Slacker

Hello, gentle reader.  I apologise for the lack of posts of late.  Like most people with a compromised immune system during flu season, I have managed to acquire myself my very own pet illness.

Thankfully, in this case, it isn’t flu.  It was a cold, and then it turned into another sinus infection, and it has just stayed that way for two weeks.  I anticipate that I will get at least one more before we kiss August goodbye, and I would not be surprised if I get multiple between now and then.

The super fun part of the infection, you’ll be surprised to learn, has not been the horrifically sore, swollen throat, the aching in my face that feels like goblins are trying to shove my eyes out of my sockets, or even the crushing exhaustion (I’m kind of used to that anyway).  It hasn’t even been the joint aches.

It’s been yet another disappointing encounter with a doctor.

I used to see this wonderful doctor at my local bulk-billing place who has consistently fixed every problem I have taken to him.  I trust him deeply.  Unfortunately, he only sees patients on a walk-in basis now, and I needed to actually book in.  I saw one doctor who is quite nice and who gave me the good antibiotics, but a week later I was still sick and getting worse so I went and saw another dude because the first doctor wasn’t available.

That doctor prescribed me weaker antibiotics, told me to use a treatment my favourite doctor had specifically told me was not beneficial and was possibly harmful, and then:-

  1. Said, “You don’t want a hysterectomy, we won’t do that for you” (I do want one);
  2. Told me there’s no need to go to the UK for a doctor because we have plenty of good ones here;
  3. Recommended a doctor who previously told me I couldn’t possibly have endometriosis so soon after my first surgery (I did);
  4. Told me that if my Australian specialist had refused to perform TPPE (he didn’t even know what it was) that’s because the surgeon knew what was best for me;

and just generally did his best to make me feel guilty about taking my medical care into my own hands with absolutely no understanding of what it took to do so.  Ok, that’s unfair – he was trying to be thorough and ensure that I was seeing someone for my endo – but he was unintentionally extremely condescending and made me feel like I had to defend my choices to change doctors and go to the UK to get surgery I literally could not get in Australia.

It’s another lesson in “if you don’t know the full story, stop judging.”

Yesterday I got sick of the weaker antibiotics not working and my sickness continuing to worsen, so I went as a walk-in and saw my favourite doctor.  He gave me the good stuff again.

Thank goodness for the good doctors.  Boo to the bad ones.

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.