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… More
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:-
- Said, “You don’t want a hysterectomy, we won’t do that for you” (I do want one);
- Told me there’s no need to go to the UK for a doctor because we have plenty of good ones here;
- Recommended a doctor who previously told me I couldn’t possibly have endometriosis so soon after my first surgery (I did);
- 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.
CW: chronic pain, suicide
Other Australians may have seen an advert by Lifeline cropping up on our bus shelters, billboards and other media over the past few months. I have a big problem with this advert.
This is it:
I think my issue with this as a sufferer of chronic pain should be fairly self-explanatory, but if it isn’t, please see the letter I have written to Lifeline below.
I have recently noticed a number of adverts for Lifeline with the slogan “HOPE: Hold on, pain ends.” This was also posted to your facebook page on 5 March 2019. I want to ask that you reconsider this slogan.
Whilst I am certain that your intention is good and that these words are important to many people considering suicide, I wonder if you have fully considered the potential impact of these words on the portion of the population for whom pain doesn’t end – those of us with chronic illness, disability or chronic pain.
In 2018 a study was done in the US examining the impact of chronic pain as a factor in suicides. It showed that chronic pain was a factor in 9% of suicides. Australian doctors have linked an increase in suicides amongst young women to chronic pelvic pain diseases such as endometriosis.
I am chronically ill and live with daily pain. One of my diseases is endometriosis. My illnesses are likely to impact me for the rest of my life, unless I have major surgery that comes with its own raft of difficult side-effects. As long as I have these diseases, I am likely to continue to experience daily pain. Every time I walk past your advert, I am reminded of this fact. My pain won’t end. It’s a further twist of the knife that is the reality of being chronically ill. Every time I see your ad, I feel a stab of bitterness, sadness and despair.
I wonder if it might not be even worse for someone with chronic pain who is suicidal. They might see your sign and think, “If pain ending is a reason not to commit suicide, perhaps the fact that my pain won’t end is a reason I should.”
Your advert fails to acknowledge those of us living in daily physical pain. At best, it ignores the risk of suicide amongst the chronic pain community. At worst, it suggests that lives with unending pain aren’t worth living.
I know from discussions with others in the community that I am not the only person who feels this way. On a personal level, I don’t know how many more times I can bear to walk past your advert without bursting into tears. There is one right outside my work – I see it several times a day and it doesn’t get any less hurtful.
I know that it wasn’t Lifeline’s intention to exclude or hurt anyone, but that is the practical effect of this advert and that is why I am writing to beg you to remove that slogan as soon as possible. Please consider the impact it has on disabled and chronically ill people. We are often forgotten and excluded in so many little ways that add up to a culture of discrimination and inaccessibility. Please don’t contribute to that.
Some people might suggest that I’m overreacting. Poo to you, I say. Poo to you. Words matter. Words can hurt. These words do.
Some might say, “Well, of course Lifeline didn’t mean that it applies to you.” That’s the point! They don’t say that! They just make a blanket statement that completely excludes the chronically ill.
If you share my feelings about this advert I would strongly encourage you to also write to Lifeline and ask them to change this advert and ensure that it is replaced with something with a better, more inclusive message. Please feel free to use my letter as a template.
I have requested a response. I’ll let you know if I get one.
Unless you have been living under a rock for the past month, you are probably aware that we have a federal election happening on 18 May.
Now, I have my own views on who to vote for and on the policies of the major parties. I definitely encourage everyone to read up one who is saying what about all the important matters. However, there are two policies particularly relevant to those of us with endo that I want to summarise here: health and disability. I’m going to outline the policies of Liberal, Labor, the Greens, One Nation and the United Australia Party (aka the Clive Palmer party).
This should not be treated as a how-to-vote guide. A party may have great policies on health but terrible policies on another area that matters just as much. It’s also not going to capture my views on the parties: this is literally just a summary of what their stated policies on health and disability are. I also acknowledge that other issues directly impact women with endo, such as issues around homelessness and employment. I’m only going to touch on those where I think they will have a very noticeable impact on people with chronic illness, rather than a general one.
If you are struggling with keeping up with all the different views of the many, many parties contesting, I encourage you to have a peek at Vote Compass. It can be really helpful in figuring out how you align with the major parties on big issues.
Now, without further ado and in no particular order:-
The Liberal Party
The Liberal Party, for my non-Aussie readers, is our current government. They fall to the right on the political spectrum, generally speaking. So far in the election they have been running on an economic platform.
The Endometriosis Action Plan has come to be during the Liberal Party reign, although it received perhaps its strongest support for Labor Senator Gai Brodtmann, who has been a fierce advocate for people with endometriosis. As far as I am aware, the plan received bipartisan support. Although the Plan puts some money towards improving care, the majority of funding goes to education and awareness.
When it comes to welfare, the Liberal focus appears to be on those who can work, but are currently unemployed, rather than those who can’t. Their website talks about initiatives such as cashless welfare cards and work the dole programmes. I strongly encourage those with endometriosis or chronic illness to research these initiatives and determine whether they are likely to hurt or help.
In their health policy, Liberal pledges to:-
- commit up to $29.1 billion to hospitals by 2025, including increasing funding to specialist care for chronic pain treatment;
- continue funding Medicare and the PBS;
- invest $308 million in reducing the cost of medication for people using multiple medications;
- increase access to MRIs;
- devote $4.8 billion to mental health care; and
- Put an additional 3,000 nurses and allied health professionals in rural medical practices.
The page also talks about reforms made over the past 4 years, but it is not clear from the page whether that funding and policy will continue. One assumes that that is the intention but I don’t want to put words in their mouths.
When comparing themselves to Labor they emphasise that they have committed greater funds during their term than Labor did during theirs, and that Labor once blocked 7 medications from being included on the PBS.
The Labor Party
The Labor Party website is a little less easy to navigate, with policies laid out singly rather than grouped by area, like “health”, but I’ve gleaned what I can and summarised below for you.
In disability, Labor pledges $10 million to disability advocacy (although it isn’t clear whether endometriosis or chronic illness more generally would be considered a disability). They aim for a 6% disability quota in the APS by 2022. They say they will reform the NDIS to close the gap between it and mainstream services. They will also amend the Terms of Reference of the Royal Commission to include redress. They will invest $300 million into students with a disability – again, it is unclear how disability is to be defined in this context.
Under Hospitals, Labor pledges to restore the $2.8 billion of funding to hospitals that they allege the Liberal Party is cutting. They also pledge $500 million to reduce emergency room waiting times. They state that they will close the gap in health care between rural and metropolitan areas. They will increase staffing at Medicare and Centrelink, which would hopefully improve access and decrease wait times.
They state that they will reverse Liberal cuts to penalty rates. I include this because many people with chronic illness find themselves working in casual positions due to the unpredictability of their illness making full- or part-time work impossible.
In the mental health area, Labor will invest $200 million in Headspace.
In reproductive rights, an area the Liberal Party doesn’t touch on at all, Labor will work to decriminalise abortion, and (significantly for those who use contraception to manage their endo) increase access to contraceptives, particularly long-acting ones such as the implanon and mirena. They also directly mention endometriosis, saying that they will be
“Addressing specific reproductive health issues such as endometriosis, polycystic ovarian syndrome, transvaginal mesh and female genital mutilation.”
They have committed to continuing the Endometriosis Action Plan.
The Greens have kindly collated all this information on just one page, which made accessing it nice and easy. From this page you can download individual, more specific plans. Say what you will about their policies – this website is very helpful.
The Greens say that they will fund a “truly universal” public health system, and reduce hospital waiting times (not clear if this is for surgery or emergency rooms or something else). They will do this by funding Medicare – there is a big emphasis in their platform of ensuring that people don’t feel they have to pay for private insurance to access quality care. It is worth reading that document – it includes details such as a $3.5 billion plan to increase care for people with chronic physical and mental illness, including $750 worth of care and a national framework for diagnosis and treatment.
They will increase mental health funding and work to destigmatise mental illness.
They pledge to raise Newstart and the New Parenting Payment by $75 per week, which will help those people with chronic illnesses who are too sick to work but can’t meet the very strict requirements for the DSP and so get stuck on Newstart long-term.
They will increase general accessibility for people with disabilities. It’s worth noting that the Greens do have a Senator who uses a wheelchair (Jordon Steele-John), who would likely appreciate the systemic barriers people with a disability can face.
The United Australia Party
I love you, my readers, but I don’t love you enough to listen to all of Clive Palmer’s speeches in the hope one of them mentions health. They don’t talk about them in the title. You can do that here if you want to.
However, I have scoured his “Vision for Australia” document looking for policies. Basically he keeps talking about boosting the economy through his various strategies, and mentions health only tangentially. He will
- build more hospitals;
- reduce income tax (helpful for those sickies healthy enough to earn enough to pay tax but who are struggling financially);
- commit $80 billion in funding to health for the next three years;
and that’s all I could find.
I’m also not 100% clear when this document was published, as the URL includes “2015” and the stats all seem to be from around then.
In summary, the UAP is very much about the economy and getting the money – the details on how it will be spent may be available but if it is, it’s not easily found on the website.
One Nation has a very pretty website, but not a lot of detail on health or disability. There is definitely more of a focus on immigration, Islam and refugees.
All I could really find in the health sphere is support for sick people accessing medical cannabis, although they don’t outline specifics of how that support looks (legalisation, decriminalisation, licensing, etc).
In terms of accessing Centrelink, they want to introduce an identity card to fight against people rorting the system.
That’s all I could find on their website. Really, that’s it. If someone else finds more, please let me know, because this just seems lacking.
I hope that may have been helpful to those who didn’t want to sift through reams of election promises to find out how folks with endo would be effected from 19 May. Please remember to vote properly and consider voting below the line to control where your preferences go, or research who is referencing whom to make sure you know what happens if your party doesn’t win.
Here’s hoping for a great future and ongoing support in the health arena.
My theme for April is consistency. Ironically, I really, really struggled with consistency throughout the whole month. Pain, illness and depression really kicked my bottom and I didn’t even write my quotes on a daily basis and had to do a big catch-up at the end of the month.
I think that just goes to show how hard consistency is for the chronically ill. Consistency is so important in developing habits, building fitness, creating a reputation as a reliable person, even constantly practising self-care – all things that are just that much harder when you have an unpredictable and uncontrollable illness. However, consistently trying is still important. And there are other things we can practice consistently – kindness, courtesy, positivity, etc. It’s really important to remember that our consistent things don’t have to be big – small things done consistently are more important than doing occasional big things in terms of building good habits and good health (insofar as is possible).
As always, I may not agree with every single aspect of these quotes, but by and large I think they have important things to say.
My apologies for the amount of unattributed quotes. Not a lot of people have cool things to say about consistency, apparently.
If you are wondering about the post image, that was what came up when I typed “keep trying” into a stock image generator, so that’s what we’ve got.
- “We become what we want to be by consistently being what we want to become each day.” – Richard G Scott
- “Consistent action creates consistent results.” – Christine Kane
- “We all have to start somewhere, and doing something is better than doing nothing at all. Start small so you don’t get discouraged and give up. Remember it is all about consistency.” – Khloe Kardashian
- “Relationships feed on credibility, honesty and consistency.” – Scott Borchetta
- “True consistency, that of the prudent and wise, is to act in conformity with circumstances and not to act always in the same way under a change of circumstances.” – John C Colhoun
- “When you’re so consistent, people have to stand up and take notice. I don’t think people recognise or praise consistency enough.” – Katie Taylor
- “For me, integrity is the consistency of words and actions.” – Kenneth Chenault
- “I pray to be like the ocean, with soft currents, maybe waves at times. More and more, I want the consistency rather than the highs and lows.” – Drew Barrymore
- “Like anything worth doing in life, happiness takes time and patience and consistency.” – Mark Manson
- “I think what children need is love, security, stability, consistency, and kindness.” – Rosie O’Donnell
- “A jug fills drop by drop.” – Buddha
- “”Quality is appreciated. Consistency is honoured. Consistency in quality is loved.” – Amal Gade
- “Trust is built with consistency.” – Lincoln Chafee
- “Long-term consistency trumps short-term intensity.” – Bruce Lee
- “Small disciplines repeated with consistency every day lead to great achievements gained slowly over time.” – John Maxwell
- “Motivation is what gets you started. Habit is what keeps you going.” – Unknown
- “Extremes are easy. Strive for balance.” – Colin Wright
- “You will never change your life until you change something you do daily. The secret of your success is found in your daily routine.” – John C Maxwell
- “Consistency is harder when no one is clapping for you. You must clap for yourself during those times. You should always be your biggest fan.” – Unknown
- “I didn’t come this far to only come this far.” – Mick Kremling (possibly)
- “Don’t stop until you’re proud.” – Unknown
- “Always be persistent in your pursuits. Consistency shows value in whatever you’re after.” – overlyxclusive
- “By being consistent with your efforts, you will find that things will start to change in what will appear to be subtle ways because we are less likely to take notice of things when they no longer challenge us.” – Jenny Stanley-Matthews
- “Your intuitive sense of what feels right or doesn’t feel right will remain consistent for a longer period of time and will far outlast the consistency of your emotional feelings.” – Sidney C Walker
- “don’t expect immediate recognition after you have made positive changes. There has to be consistency in your behaviour and performance over time. Don’t think that by reading a book and changing some of your behaviours that tomorrow will bring you recognition or a promotion.” – Catherine Pulsifer
- “The body loves routine. Try to eat, sleep, and so on at the same times every day in order for the body to function at its optimum efficiency. The body loves consistency.” – Theresa Hearn Haynes
- “Strive for progress, not perfection.” – Unknown
- “If you do what you’ve always done, you’ll get what you’ve always gotten.” – Anthony Robbins
- “Compromise, communication and consistency are needed in all relationships, not just romantic ones.” – Alex Elle
- “If you are persistent, you will get it. If you are consistent, you will keep it.” – Unknown
So, that’s another month of quotes for you. May is going to be all about persistence, which sounds like the same thing but isn’t. Hope you’ll stick around to read all about it.
Another month has passed astonishingly fast, and it’s that time again – a monthly gratitude post.
Not going to lie, April has been super hard, and so finding things to be grateful about has been trickier than usual. I haven’t really had any spectacular lows, but it’s felt like I’ve been in a constant slump. I’ve had a number of sick days, and had a really bad experience with my last Prostap injection (a painful infection at the injection site and ongoing struggles with the side-effects). The ongoing pressure of the adenomyosis and the general malaise and lack of hope that comes with chronic pain has been exceptionally hard to deal with.
However, I made a commitment to be more grateful and positive this year, and these posts force me to consider the good things in my life, so let’s go.
I wrote about what Easter means to me as a chronically ill Christian, so I hope I’m not cheating by mentioning it again. There are plenty of reasons to be grateful for it, though. A four-day weekend (followed shortly by ANZAC Day), lots of chocolate, and, of course, the celebration of Jesus’ sacrifice that means an afterlife in paradise. That’s always good.
2) Girl’s night
I got a chance to spend the evening with my four best girls. We are a diverse group in both personalities and backgrounds, but we still have plenty in common – enough that we have stayed friends for ten years during the most turbulent times of our lives. Perhaps our greatest commonality is our love of great food, which we ate at tonne of. One of this fabulous group is from Bangladesh, and boy, does her mum create the most amazing feasts ever. I could LIVE off her dahl. Her spinach is mind-blowingly good. She is single-handedly responsible for making me like cauliflower.
Sure, it was incredibly high FODMAP and I was in agony the next day, and I accidentally ate a chilli, but it was entirely worth it. And now I’m craving her spinach. Damn it.
Also, the chance to see my four wonderful best friends is always so good. Everyone should have that friend or group of friends that they love and trust and always feel incredibly happy to see, even when life is hard or you don’t want to socialise. This is that group. There is no feeling in the world like spending time with my girls.
3) ANZAC Day
I may be pretty anti-violence, but I am not against people standing up to invaders. I can also appreciate the courage, heroism and comradeship displayed by the ANZACS and the other soldiers of WW1. Can you imagine how terrifying it would be to suddenly see a tank coming over the horizon in a war where cavalry with swords were still in common usage? Can you imagine the mud, the blood, the terror, the cold in winter and the searing heat in summer, the disease, the privation and the utter uncertainty? I don’t think war is something to celebrate, but the qualities of the soldiers who fought are, and their deaths should be remembered and commemorated. I am grateful for what they did to ensure that we won the war.
4) An income
In the last month I’ve seen a lot of articles and the like on the difficulties of people with chronic illnesses who also have to deal with a low income or poverty. This one in particular tugged at my heartstrings. Australia has a good social security system compared to some countries, but as a lawyer I heard a lot of stories about people struggling with bureaucracy and a lack of understanding of the nuances of their condition. I am incredibly grateful that I don’t have to battle for Centrelink, or try and live on the amount dispensed. A stable income, having enough left in your pay after the necessities to save or give to charity – these are privileges that cannot be underestimated.
5) Changing leaves
As I wrote last month, I love autumn. I’m enjoying the cooler weather still, although I’m not thrilled with some of the very cold mornings. What I am loving this month is the beautiful autumn colours as the leaves change from green to shades of gold and red. Some of the older suburbs with the European trees are just incredibly beautiful in autumn. It was a particularly big shock for me when I took a week off sick at work to go from driving down the street my office is on and seeing it go from a green tunnel to suddenly almost bare, with the road covered in golden drifts of leaves. I also really love the smell of autumn leaves as they break down. It’s so earthy and rich.
During April I took advantage of a Fernwood sale and bought myself a membership with some personal training. My PT, Emily, is really fun and works me within my limits, but doesn’t let me slack off. I’m really exciting to be getting my fitness back on track, and have been taking on some additional exercise as well (I swam a kilometre for fun the other day!). I’m doing almost an hour of warm-up before my sessions, and it is really, really relaxing for the brain. I can just focus on my body and making it work. It’s great mindfulness.
I also really enjoy feeling exhausted and sore for a good reason, as opposed to just feeling exhausted and sore because disease. It’s satisfying and makes me feel proud of my achievements. I’m not losing any obvious weight (thanks menopause!) but I am feeling my muscles harden up and I have a little bitty line on my biceps that looks like it could be a muscle.
7) Vegan smoked salmon
Since going vegan, people often ask me if I miss meat. Generally speaking, no. Sure, I enjoyed bacon and rissoles, but I never really got excited about steaks or chicken. I genuinely do enjoy the taste and texture of fake meats better in 99% of cases. However, I loved fish. I definitely didn’t give up eating fish because I hated the taste. Gardein Fishless Fillets filled a big gap for me, but I really, really missed smoked salmon. Thankfully, the Cruelty Free Shop has started carrying Sophie’s Kitchen Vegan Smoked Salmon. It’s not a perfect replica but it is very close and soooo tasty. I had so many slices of toast with Tofutti cream cheese and some chives. Heaven. Happy little vegan.
8) Macaron adventures
Disclaimer: the macarons in the picture above are not mine. Mine only vaguely resembled macarons.
Pictured above: attempts one and two. They tasted fine. I’ve never tasted macarons before, vegan or otherwise, so I have no point of reference, but these were nice, with a light marzipan flavour. I definitely need to have another crack and try and get them better, but I think eventually I’ll get it.
I baked them with my sister and it was a bit of a giggle. It took us HOURS and she managed to turn our sugar syrup into a solid rock, but I enjoyed it, even if it was incredibly frustrating to put in all that work and just get explosions.
This is the recipe I used. On my second batch I turned the oven down to 250F and it worked much better. I’ll keep playing and let you know if I ever manage it.
9) Love Nikki
If you play mobile games with pop-up ads you have probably seen some for Love Nikki. It’s basically like Pokemon but for fashion. Your character, Nikki, is inexplicably transported to another world with her cat, Momo, and ends up in a bunch of styling contests. The game has a bunch of content and paying players definitely have a big advantage, but even my cheap self who just plays the free version can get heaps out of it.
It may seem like a silly thing to be grateful for, but it’s another thing I can do for fun when I’m really sick and stuck in bed. Apps are great for the chronically ill. Plus, I really like anime and pretty clothes, so this ticks all the boxes. Let me know in the comments if you’d like a more in-depth review.
10) Sex Education
I don’t mean the school lessons – mine were patchy and weird at best. Highlights included being told repeatedly to just “keep your pants on!” in a strong US accent, and pictures of diseased genitalia. That’s a Christian school vs a public school for you, I suppose. Both freakish and not particular useful, just in very different ways.
What I am actually referring to is the Netflix show, Sex Education, starring Asa Butterfield (you may recognise him as the titular character of Ender’s Game). Whilst this show does have more sex scenes than I really want to see (probably unsurprising, given the name), it also deals really, really well with some very real issues – poverty, abandonment, over-protective parents, divorce, sexual trauma, abortion, vaginismus, slut-shaming, parental pressure, revenge porn, stigma against virginity, stalking, drugs, homosexuality (both repressed and flambouyant) and the attendant prejudice and danger, and a raft of others. The characters are engaging – some are deeply loveable, some are deeply tragic, and it is just incredibly well-written. If you don’t mind a whole bunch of nudity and want a show that really tugs the heart-strings, this is a good one for you. I was hooked. I am not kidding when I say I laughed, I cried, and I determined to teach my hypothetical future children strong lessons about their self-worth and ensure that they get proper sex education.
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
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
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.
CW: It’s an Easter post. It inevitably talks about religion, suffering and death.
I’ve written before about my faith, but today I want to talk about why Easter specifically matters to me so much as a chronically ill person.
(Before I jump into it, a quick note on the cover photo for today, which is a person in a giant rabbit costume staring out over a shadowed landscape under a cloudy sky. I have absolutely no idea what possessed someone to take this photo. It is not quite the crosses-on-the-hill image I was looking for, but it is so strange I couldn’t help but use it. I love it. I have so many questions.)
To any of my readers who have somehow escaped hearing what Easter is in the Christian calendar, it is the celebration of Jesus’ death on the cross and his resurrection three days later. In Christian canon, Jesus is the sinless son of God in human form, with all human frailties and weaknesses, who experienced the full range of human emotion and physical pain. He began his ministry and around 30, and was eventually put on trial and killed after stirring up a whole lot of trouble amongst conservative Jewish elders, mostly by calling them hypocrites who cared more about the appearance of holiness than actual connection with God, and doing forbidden things like hanging out with prostitutes and healing people on the Sabbath. After being beaten, humiliated, whipped, crucified and stabbed, he died, was buried in a tomb with a big old rock in front of it, went to hell for a few days, then rose again and did some more preaching before ascending to heaven to sit at the right hand of God.
Here are some of the things from the Easter story that stick with me more than ever as a permanently sick person:
1) Jesus knows what I am going through
As noted above, the idea that Jesus became fully human means that he experienced hope, despair, exhaustion, frustration and disappointment just as I do. He also experienced fear, and a desire to not have to go through with more pain and suffering. In the garden at Gethsemane, when he was praying prior to his arrest, he begged the Lord to “take this cup away from me.” I know exactly what it is like to ask that question. I don’t know what is coming in my future as clearly as Jesus did, but I know that there is likely to be more bad stuff. Jesus has felt that and asked for it to be taken from him. There’s no shame in me doing it.
He also experienced unimaginable agony. Endometriosis has sometimes made me feel like there is a monster tearing my uterus apart from the inside, but I’ve never been whipped, starved (except for colonoscopies, but that is different), refused any liquid but vinegar, and hung on a cross for hours, which historians tell us is a truly horrific way to die. Jesus knew pain. He knew how it feels like it will never end, like you can’t go on, like there is nothing but that pain. He understands intimately how I feel when my pain is bad.
2) Jesus didn’t get better either
Ok, I know that sounds weird, but hear me out. Sure, Jesus may not have had a chronic illness, but from the moment his trial began and the pain started, there was no respite. He did not get a break from pain and privation. His pain ended only with his death (and then he went to hell, so he probably got a whole new kind of pain there).
Now, that may sound really bleak, but it is a lot less frustrating and a lot more realistic to me than people saying, “This too will pass.” The whole point of chronic pain is that it doesn’t pass. Sometimes, we just endure it until we die. However, when it doesn’t we sometimes feel as if we are doing something wrong, or worse, get treated as if we are. I’ve written before about how Christians will sometimes treat other Christians as if their ongoing illness is somehow evidence of sin. But there was no relief for Jesus, the man who never sinned, so I’m not doing something wrong by failing to be healed.
In this lifetime, it didn’t pass for Jesus, and it may not pass for me. But, that’s ok, because…
3) It does get better after that
This is probably where I’m losing the non-religious folks, because I can understand how anything “after death” can sound a bit wacky to people who believe you die and that’s it. The big promise of Easter, though, is that we don’t die and that’s it. We die and are reborn in heaven. We don’t suffer any more. We experience such incredible joy that it is as if we have never suffered. I used this CS Lewis quote in my last article, but I’m going to use it again here because it sums it up so well:
That is what mortals misunderstand. They say of some temporal suffering, “No future bliss can make up for it,” not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory. ..And that is why, at the end of all things, when the sun rises here…the Blessed will say “We have never lived anywhere except in Heaven.
Because of Jesus, my place in heaven is guaranteed and I will one day have healing that will make my pain-free days on earth look like poo. I will be healthy again. I will know peace and energy and absolute, perfect love.
4) I’m worthy as I am
Jesus wasn’t crucified alone. Two actual criminals – thieves – were hung on either side of him. One of them turned to Jesus and said, “remember me when you come into your kingdom.” Jesus replied, “Today you will be with me in paradise.”
Now, I’m no angel, but I don’t steal things. I’ve never been convicted of a crime. I’m not an adulterer. Jesus forgave people who were. He will and constantly does forgive me.
I’m being a little long-winded about this, but bear with me. In this world, we have to do a lot of things to be accepted – to be viewed as worthy. The chronically ill are often told that they aren’t good enough, or aren’t trying hard enough. Spiritually, though, none of us are – all have sinned and fallen short of the glory of God, after all – but Jesus doesn’t care. He loves me and thinks I am just as worthy as any more able-bodied person. His forgiveness grants me a place in heaven regardless of whether I meet society’s standards of what constitutes worthy or not.
Do any of my Christian readers have a different take on the Easter story, or get a different kind of comfort from it? For all my readers – join me in being so damn grateful for a four-day weekend, plus ANZAC Day later this week! I loved stacked public holidays.
A while ago I did a post on 10 quotes that really summed up some of the experiences we have with endometriosis/chronic illness. Recently, a lot of similar quotes have been popping up in my Pinterest feed, so I thought this might be a good time to do another one of those posts.
1) “When I finally find a pain-free position…but then I have to pee.”
The quote is superimposed on an image of James Van Der Beek ugly-crying.
This one doesn’t really need an explanation, but boy, is it true (and frustrating).
2) “Fake it til you make it doesn’t work with chronic illness”
Image is a tumblr post by thatchronicfeeling. It reads:
“‘Fake it till you make it’ dosen’t work with chronic illness.
Instead, the options are:
‘Fake it till you are so ill you can’t get out of bed’
‘Fake it till you have a flare’
‘Fake it till you have a flare, continue to fake it till you’re hospitalised’
‘Accept that you have one or more chronic illnesses, adapt accordingly and look after yourself.'”
I suspect most of us are guilty of trying to fake it til we make it far too many times, largely because there are enormous societal and economic pressures to do so, even though we know it doesn’t work and isn’t conducive to long-term health.
3) The Most Annoying Thing
Image reads: “The thing that kills me about chronic illness is that you can do everything right and still be sick. You can be on the best medications, eat the best food, exercise seven days a week, sleep eight hours every night, and still be sick. You can follow every rule, do everything your [sic] supposed to, and still be sick.”
You’re telling me. I flew halfway around the planet to get the best surgery currently available only to discover I have another underlying condition that the surgery can’t treat. I sleep ten or twelve hours some days and I’m still fatigued beyond enduring.
On the other hand, I did go to my Bangladeshi friend’s house the other night and eat all the high-FODMAP food, but honestly, if you could taste her mum’s dahl, you’d eat it if it killed you.
4) Of Mice and Men
Image is a quote from Of Mice and Men: “It’s just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I’m physically able to do.”
This really hits home. As I write I’m supposed to be at beautiful Pearl Beach catching up with a dear friend whom I don’t see nearly enough. Instead, I’m at home in my pjs because I couldn’t handle the journey.
5) I want to be enough
Image reads: As a chronically ill person, I don’t want to be told I can do anything if I put my mind to it. I want to know that what I can do is enough.”
Absolutely. It doesn’t matter how determined I am to be a prima ballerina when I can barely make it to the gym twice a week through fatigue and pain. Rather than being told “you can do anything!”, which kind of rubs it in our faces that we can’t, tell us that we are doing really well as we are (because we are).
Meme of a cat face on a background partitioned into six shades of blue. Texts reads:
“Me: so what are we going to do with my life?
Body: It’s a surprise!”
It sure it, body. It sure is.
7) Waste of spoons
Image reads: Why waste spoons on shaving your legs?
I’ve had many a day in between laser sessions where I have thrown out my skirt or dress plans in favour of trousers because shaving requires far, far too many spoons.
If you can’t bear the sensation of leg hair want to know more about removal options, have a squiz at this post where I evaluate the pros and cons of a few different choices.
8) Competing Desires
Image reads: I am a person who wants to do a lot of things trapped in a body of a person who wants to sleep a lot.
Never a truer word was said.
9) A Fully Functioning Body
Image is a tumblr post by thefairiegirl. It is a picture of a shocked lego-person in glasses with the text:
“When I see someone with a fully functioning body:”
and the lego person says, “I’ve always wanted one of those.”
Wouldn’t it be nice?
Image is from someecards. A vintage image of a lady in a bathtub on a blue background, with text that reads: “You don’t know what fatigue is until you’ve had to rest after taking a shower.”
I mostly take baths now for that exact reason, and I still have to rest afterwards.
What quote resonates with you the most?
If you enjoyed this post and want to see more of these quotes, follow me at https://www.pinterest.com.au/bubblesinthebrain/ and look for my Endometriosis board.
Massive CW for fertility, pregnancy, hysterectomy.
Brace yourselves, kids. This one’s getting personal.
As you may know from recent posts, my formerly tentative diagnosis of adenomyosis is now officially confirmed. Unlike my endo, which showed up on precisely no scans ever, my adeno showed up loud and proud at the top of my uterus on an MRI.
I’ve talked before about what adenomyosis is and how it differs from endometriosis. The biggest difference for many is that adenomyosis can be cured by a hysterectomy, which endometriosis cannot. That’s kind of what I’m getting at with this post, but also not. It’s the results of that dissimilarity that has been the biggest difference for me. For the first time, I’ve had to think really seriously about what I want from my future.
I’ve flirted with the idea of children before. I mean, I am married, and in my late twenties, so it is something that many people would assume is the next natural step for me. I’ve kind of always assumed I would end up with children, because it’s what you do, right? You grow up, you meet a nice boy, you get married, you have two and a half children and a white picket fence. The circle of life, etc. At the same time, however, I have never been overly maternal. I don’t get clucky when I see a baby. I’m not all get-it-away-from-me – I can hold them competently enough, and I can entertain children for a few hours (it literally used to be my job, after all), but I never really felt the need to have one myself. Add to that the fact that there are so many children in need of a good home, that our planet’s population is increasing at a rapid pace, that I could potentially pass these awful diseases onto a daughter, and that I really resent the idea of taking yet another hit to my career and to my body when both have already had to endure a great deal, and children just never became an immediate priority.
There’s also the fact that I’m terrified of pregnancy and childbirth. It looks hard. It makes your ribcage expand. All these awful words like “episiotomy” and “tearing” get tossed around. The thought of losing bowel control in front of a bunch of strangers, and worse, in front of my husband, also doesn’t appeal. It’s undignified and painful, and I’ve had enough of both.
But now I have adeno.
As long as I had endometriosis I knew that I would have to make a decision on the topic at some point, because endometriosis *may* have an impact on my fertility. My original plan of leaving it to my thirties was not one that various doctors have encouraged. Still, I assumed I had time, and that at some point down the track some sort of maternal instinct might kick in, or I might at least feel a bit ready. It hasn’t to date.
With adeno, however, suddenly the possibility of an outright cure is being dangled in front of my nose like a very shiny carrot. One operation – albiet a serious one – and my pain could be gone. My endometriosis is being managed so well by Dr Edi-Osagie that for the first time in years, the prospect of a fully pain-free life seems within my grasp.
Of course, if I have a hysterectomy, then it is bye-bye to the prospect of biological children. Yes, adoption is an option, but let’s not pretend that it is easy, cheap or inevitable (multiple chronic illnesses tend to count against you in the assessment process, I do believe). So now I have yet another of those awful choices that endo and adeno leave you with – do I endure the pain for longer, and potentially experience more when my contraceptive devices are removed, in the hope of conceiving a child, or do I jump at the chance of a cure right now and lose the choice forever?
If I chose the first option, how long do I wait? I always wanted to be financially stable before bringing a child into the world, and I’m not badly off, but I’m not where I would ideally like to be. I wanted to be further into my career. I wanted to have travelled more. I wanted to do a lot of things that endo has prevented me from doing, but that a child will also make more difficult. I wanted to feel more ready, more sure. It’s such a big decision – is it fair for me to be making it with even the slightest doubt in mind? What do you do when you have doubts about either option?
Is it fair of me to put my husband through this? I’m already a bit of a burden at times (many times). My pregnancy could be really difficult and make it even harder on him. He’s self-employed where as I have a stable income – there’ll be an additional financial pressure on him. If I do successfully carry to term – let’s not forget that miscarriage is a heightened risk for women with endo – will I be able to recover from the birth easily, or will my health struggle like it does with everything else?
What if I’m a terrible mother and my child grows up to be an incel or something?
Ok, I’m less worried about that last one.
On the flip side, I don’t know if I’m ready to lose that choice. When I bake a cake or read a great book or see a fantastic movie, I think, “I want to share this with a child someday. I want this to change them the way it has changed me.” I want to share these things with a younger generation, and it’s at the moment it’s not likely I’ll get to do that in a “cool aunt” capacity.
Either way, it is a huge decision, and I’m wrestling massively. I think I have decided, but I keep flip-flopping. Whatever I end up doing, though, I resent the adenomyosis for forcing me to make this decision before I am ready. I resent the endometriosis for stealing away my chance of doing all the things I wanted to do as a young married couple before I had children. I resent that being a chronically ill woman is littered with such awfully difficult choices.
Have any of my readers faced this decision? Were you ambivalent about children? What were your thought processes? I am so keen to hear from anyone in a similar situation.
Yes, it’s April now, but too bad, you’re going to hear what I was grateful for in March anyway. Suck it up. Be grateful.
1) I went to Melbourne for the first time
Yes, I am one of those Australia-dwellers who had never actually been to Melbourne. For non-Australians, there is this ongoing rivalry between our two biggest cities, Sydney (New South Wales) and Melbourne (Victoria) about which one is better. Both have lots of nice old buildings, stacks of traffic, and road rules that make it very difficult for visitors to have a clue what’s going on.
To be honest, I wasn’t that impressed with Melbourne as a city (heresy, I know). It’s not really that different from other big cities to me. I just don’t like cities that much. However, I did get to see one of my best friends whom I haven’t seen in ages, drink a zingy bubble tea, attend an interesting seminar, and try Lord of the Fries for the first time (very tasty).
2) I saw Julie Bishop
I went to a very interesting seminar at which Australia’s recently resigned Foreign Minister, Julie Bishop, was speaking. Love or loathe the Liberal Party and its members, I think Julie Bishop is a very impressive, articulate and well-informed woman who has been a bit of a trailblazer in an arena still very much dominated by men. She also has some amazing clothes. It was a privilege to get to hear her speak in person and I was very interested to hear her views.
3) I made a cake
I love baking and cooking, but they can be difficult for me, because standing for long periods is a huge trigger for my pain. This one is pretty quick and easy, though, and it was a big hit at work!
I made two six-inch cakes instead of one eight-inch cake, and layered strawberry jam, fresh strawberries, and Sarah Kidd’s delicious cream cheese buttercream between them and on the top. I still have stacks of buttercream left over, so I’m going to make some cupcakes for next week and continue to buy the love of my coworkers with delicious vegan baking.
4) I went to a cafe and there were millions of dogs
It was a brunch, and the food was very tasty, but the DOGS. There was a tiny dachshund puppy in a wrap like a baby, with the softest head I have ever touched. There was a huge lollopy smiley golden retreiver. There was a beautiful sleek black greyhound called Jazz, who wanted lots of strokes. There was a bear that the owners tried to pass off as a St Bernard. It had paws the size of my face, and I have a fairly average-sized face for a 178cm human. There was a pitbull with a smile that lit up the whole day. Basically, it was heaven. There was cake and dogs. What more could you possibly want?
5) The weather got colder
It’s no secret that I love spring, but I also adore autumn. Summer in Australia is just too hot for a pasty white child like me. I sweat and I crisp up at the edges, and the backs of my legs stick to chairs. I don’t like it. Autumn, for the two weeks it seems to last in Australia, has days in that perfect 18-25 degree range, with enough sunshine to boost the spirit and enough grey rainy days to let a girl cuddle up under a soft cushiony duvet with an animal and her husband. Perfect.
6) I learned some salsa
Thursday 21 March was Harmony Day in Australia, a day about celebrating multiculturalism. As part of it, my workplace hosted a salsa class.
A bunch of corporate types trying to salsa in suits will always be good value, but the class itself was just clean good fun. Was it good for my endo? Not even slightly. Did I have a slightly sweaty blast and get some good cardio and strength work in? Sure did!
7) One perfect rose
I’m a big fan of the poetry of Dorothy Parker. She wrote a poem called “One Perfect Rose.” It goes:
A single flow’r he sent me, since we met.
All tenderly his messenger he chose;
Deep-hearted, pure, with scented dew still wet–
One perfect rose.
I knew the language of the floweret;
“My fragile leaves,” it said, “his heart enclose.”
Love long has taken for his amulet
One perfect rose.
Why is it no one ever sent me yet
One perfect limousine, do you suppose?
Ah no, it’s always just my luck to get
One perfect rose.
Well, from my garden in March came one perfect rose, and it made me very happy. Unfortunately, I cannot seem to get this picture off my phone and into this post for the life of me, so, if you want to see it, along with pictures of random flowers that make me happy and many pictures of corgis, cats and wigs, have a look at my instagram, @offbalancespinningtop.
8) Dinner with my friend
Despite living in the same city as her, I don’t get to see one of my friends nearly as often as I’d like. However, we started the month with dinner together and I love spending time with her so much. She is the sweetest, kindest person and just makes everything better.
9) Youtube Fun
I spent a fair amount of time on youtube in March. Possibly more than was healthy. Anyway, I had a great deal of fun binge-watching Safiya Nygaard’s videos. She’s just so fun and happy and does such wacky stuff, and she bawled like crazy when she got engaged, which made me happy-cry. A good time all round.
10) Queer Eye Season 3!
I love Queer Eye. It is so heart-warming and Tan France’s hair is an international treasure. The fact that Season 3 has come makes my little heart sing. My favourite episode was Black Magic, in which Jess, adopted and then rejected when she was outed as a lesbian to her conservative family, learns how to trust and love again, as well as getting in touch with both her sister and her own identity as a black woman.
There was a very disconcerting episode in which a very tall man shaved off the nice beard Jonathan Van Ness had carefully given him. I was in shock.
Do you watch Queer Eye? What was your favourite episode in Season 3? What made you happy in March? Let me know in the comments!