CW: maternity, weight gain, gendered language I’ve written before about the difficulties of holding down a job whilst living with endo. Re-reading that post is an interesting experience. I was still in litigation, and specifically… More
CW: pregnancy, body image
As I mentioned in January, one post I really want to try and commit to each month this year is a list of things I am grateful for. It is actually quite challenging. Although I’m generally a positive person who lives life at a level I would call “content”, and only occasionally swing into bouts of terror and sadness, this is quite a challenge for me, particularly since I want to put my animals and my family on every list and I have set myself the challenge to be grateful for new things every month. Anything that stretches my ability to be grateful, however, I suspect is a good challenge. Practice, after all, makes perfect.
1) fLash Lash
This may sound terribly superficial, but since we’ve already established that I am I’m going to plough right ahead anyway. My friend put me on to this lash serum. I was really sceptical at first because the idea of a lash serum just sounds really gimmicky to me. However, I’ve been using it for about a month now, and it works! My lashes are actually longer. I tried to take a before and after, but unfortunately my before is really blurry so it’s extremely hard to see any sort of difference. The difference isn’t huge – certainly nothing as dramatic as the pictures on the website – but it is noticeable, and I love it. I will definitely be repurchasing this one. (And no, sadly this is not a sponsored post and I do not get any money from spruiking the wonders of fLash Lash).
2) Maternity jeans
I’m not pregnant, but I am now a sworn devotee of maternity jeans. I’ve never actually tried them before, although I have written about them as I know other endo-warriors who wear them. Now I’m not sure I ever want to wear anything else. I tried on this pair yesterday and was blown away.
They look like jeans, but they feel like leggings and they are so soft and comfy on the belly. They are actually quite flattering, and I say this as someone who has always felt very self-conscious about the width of her hips in leggings and skinny jeans. With a pair of biker boots they are positively badass. Badass comfort – what more could you possibly want? You could fight crime and look cool in these things.
3) New friends
Whilst I still miss my friends from my old workplace, particularly my fLash Lash friend and another lovely woman who left a few months before I did, I am delighted to have found such incredible people at my new job. They are mostly women, and they are all wonderful – friendly, helpful, chatty, hardworking, collaborative, and always up for a jaunt to the local coffee shop or grocer. They’ve made me feel so at home. Great colleagues make for a great job even when the work isn’t tops, and I love the work too, so it’s great all round.
4) My employer’s attitude to disability
Although I have thankfully not had to put it to the test in a “I’ve only worked three hours in the last month” sort of way, my employer so far seems really pro-disability and supportive of disabled staff. We get personalised desk assessments (everyone, disabled or otherwise) and if you have a pre-existing condition they get in a physio or other specialist to do it. Mine has resulted in a better chair and an extra plug so I can have my electric heat pack plugged in at my desk. This means no more awkward trips to and from the kitchen every forty minutes juggling a piping hot wheat bag that will be painfully hot at first and then cool down annoyingly quickly. This hugely increases my ability to stay at my desk working. It makes such a difference.
5) Cool weather
I don’t do terribly well in the heat. I am too white for days much above 30 degrees. I like a gentle cool breeze on a warm 27-28 degree day. English summers are largely perfect, in my eyes. Summers here are dry and baking and seem to parch the moisture right out of you, except when it is stormy in which case they are hot and sweaty but still leave you really thirsty and dry on the inside. Thankfully, February has largely seen a move to more gentle temperatures. As I write this, we’re expecting a top of 24. Perfect. Love it. I know I’ll be having the opposite feeling come winter, but right now I’m happy as the proverbial clam.
6) Nice hair
It’s not always nice, but yesterday I got a haircut and now it’s just spiffy. It’s great while it lasts and it makes me happy. It smells nice, too.
7) Adventurous tomatoes
I didn’t plant any tomatoes this year. My plants just ran riot last year and I had more tomatoes than I could comprehend, so I thought I’d give them a miss this year. Despite this, I have four or five tomato plants sprouting in the garden, including one that is growing in the cracks of the pavement again. They are plucky and determined plants, and I’m actually pretty excited because I do like tomatoes. I also have a single brave chili growing in my Vegepod. I’d forgotten I even planted chillis (did I plant chillis? Is it even a chilli? We’ll find out when I cut it open, I suppose).
8) Valentine’s Day
Like most people, I’m not a huge fan of the commercialism that inevitably springs up around days like this. However, I am a fan of the idea of love persevering, and a brave man helping couples marry in secret. I also like the reminder it brings to have a special date with my husband and take an evening to really cherish our relationship. We’ve endured a lot together and it’s really important for us to make happy memories too.
9) The Done app
As you may know from my previous mention of my dairies, I’ve switched from a bullet journal to a more traditional (but also very fullsome) planner this year. One other thing I’ve done is make my habit tracker digital. There’s an app called Done which allows you to track 5 habits for free, or as many as you like for $6.99. I paid for the full suite. I’m sticking to tracking my habits far more effectively when it’s on my phone, and it is actually easier to view trends there.
When you have reached your goal for the day/week/month/whatever, the bar fully fills up. The number on the right refers to your streak of how many days/weeks/months in a row you’ve managed the habit. It’s quite motivating and really quick to do.
10) Finally getting over this cold (I hope)
This darn cold is dragging on and on and on, as they always do when you have an immune system as useful as the male nipple. However, I think it might finally be going away. I can feel something almost like energy waving a tentative hand in my direction, and my headache is only dizzying instead of catastrophic. Progress!
I’ve written a lot about endometriosis. I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis. Now I want to write a little series on other chronic conditions that often appear alongside endometriosis. Today, it’s myalgic encephalitis (ME), better known as chronic fatigue syndrome, aka CF or CFS.
Like most chronic illnesses, chronic fatigue can be mildly described as a massive pain in the posterior. It’s exactly what it sounds like – extreme exhaustion that varies from sporadic to constant. Have you ever had glandular fever, and had that dreadful, bone-aching exhaustion that drives you back to bed, on the verge of tears from sheer tiredness, just two hours after a 16-hour sleep? I’m told its much like that. In fact, chronic fatigue can often develop after a bout of glandular fever. In other words, to describe CF as mere constant tiredness is inaccurate. It’s crushing. It doesn’t get better with rest, and it gets worse with lack of rest. My own bout of glandular fever has given me a healthy fear of chronic fatigue. I’ve never felt so horrific and disconnected in all in my life, and I only had it for nine months. CF can be limited in duration, but it can also last for years, or for a lifetime. Anyone of any age can contract it, even children.
This exhaustion may be the only symptom sufferers endure, but others may experience headaches, dizziness, weakness, nausea, light-headedness, aching muscles, joint pain, sore throats and tender lymph nodes, as well as trouble remembering, concentrating, or forming sentences (brain fog). Unfortunately, most of these are also symptoms of glandular fever or even influenza, so it is worth speaking to your doctor to rule those two out. Glandular fever can be confirmed with a simple blood test. Indeed, excluding other conditions, such as anaemia, is the only way to arrive at a CF diagnosis, as there is no one test to confirm that you have it.
There’s also no known reason as to why people develop it. Like most of the illnesses I’ve discussed in this series, it appears to affect those of the XX persuasion more than the XYs. Its onset it sometimes linked to physical stressors, such as infections, imbalanced gut flora, and hormones doing wacky things, as well as just plain stress. However, we’ve yet to identify a single factor that guarantees you’ll get it, and having any or all of the above doesn’t mean you’re automatically going to.
As you can imagine, the impact of severe chronic fatigue is devastating. It can totally prevent normal socialising, normal functioning – normal anything. It leaves people without the strength or energy to do much more than maintain the physical functions, and I’m told even that can be a stretch on bad days. Even those less severely impacted suffer the impacts on their work and social life, particularly as it can strike at any time of day. For those whose friends or family suffer it, prepare to extend a lot of patience, sympathy, grace, and practical assistance wherever you can.
So, what’s the good news? Unfortunately, it isn’t that there’s a cure. There isn’t. There’s also no one treatment. Really, the news isn’t that good. Treatments are largely changing lifestyle factors – ensuring a healthy diet, planning your day around periods you tend to have more or less energy, pacing yourself carefully, and practising good sleep hygiene, including avoiding caffeine or naps late in the day. Gentle exercise may help some, but for those who suffer Post-Exertional Malaise (an increase in exhaustion after activity) will probably not benefit. Symptoms such as headaches etc can be treated with painkillers.
The most important thing, as I understand it, is having support. Supportive friends, a supportive workplace, but most of all, support from people who get it. I think that’s true of most chronic illnesses – to have even just one person who knows what it’s like can be a huge relief.
Do you have chronic fatigue? What was the trigger for you in developing it? Do you have any coping strategies you can share? Let me know in the comments.
I’ve written a lot about endometriosis. I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis. Now I want to write a little series on other chronic conditions that often appear alongside endometriosis. Today, it’s fibromyalgia, aka fibro, FM, or FMS.
Before I carry on, I just want to apologise for this post being a little tardy – I’ve been very sick with a nasty, persistent cold and some rather bad flare-ups, so I haven’t had any energy to spare for writing this week. I suspect there will just be one post next week as well, so bear with me for a bit whilst I recover.
Of all the chronic conditions that people with endo often end up with, fibro is probably the one I fear the most. The reason for that is that my endo pain is generally confined to my torso, and at worst may cause shooting pains in the legs. Fibro is just pain everywhere. All over. Muscles, joints, bones, the whole shebang. Imagine that – pain embedded in your skeleton. It can be limited to just a few spots on the body, true, but it can also effect the whole body at once. People who have fibro have described it to me as hellish, rendering them completely unable to move.
In addition to pain, it can cause such delightful symptoms as tingling, muscles that twitch, cramp or go suddenly weak, headaches, dizziness, generalised weakness, sensory overload, impaired concentration so bad you can hardly string a thought together (aka brain fog), insomnia, restless sleep, intolerance of hot or cold, stiffness, irregular periods, depression, bowel troubles, bladder issues and more. Doesn’t it just sound like a hoot?
Of course, the best part is that, just like endometriosis, we don’t know what causes it, and there is no cure. We do know that stress exacerbates it and there seems to be a link between onset and physical trauma, but not all physical traumas cause fibro and not all people who suffer from fibro have experienced a physical trauma. We also know you’re more likely to suffer from it if you’re a woman (80-90% of sufferers are female).
Because of the wide variety of exciting symptoms, fibro can be difficult to diagnose. There’s no conclusive test, even through surgery. It’s mostly a case of ruling out other causes for pain. Unfortunately, this can often result in delays of diagnosis for sufferers of fibro.
The treatment is also difficult. Mostly, it’s lifestyle management, like identifying and avoiding triggers (difficult to do when triggers can be things like, well, moving). Many doctors recommend physio and gentle exercise, such as water-based exercise, yoga, or tai chi. It’s also recommended to eat well, avoid stress (lol) and get plenty of rest (extra lol). (I note that I am laughing at how they make that sound so easy, not the idea itself – lots of rest and minimising stress are important in battling any chronic condition). Unfortunately, some things that can cause flare-ups can’t be avoided, such as weather changes (yes, seriously), and travelling.
There are medical treatments as well. Some people can get along well with panadol and ibuprofen, but others may need to resort to stronger drugs like pregabalin and gabapentin. Like treatment for endo, it can get expensive quickly.
The connection between endo and adeno and endo and PCOS probably seemed quite logical, but why have I linked endo and fibro? Well, because studies suggest people with endo are more likely to suffer from fibro. We’re also more likely to get chronic fatigue, a condition we tend to have in common with fibro sufferers, and which I will be writing about next.
I live in deep admiration for people with fibro, especially those who also suffer from endometriosis. I have a really hard time sometimes just dealing with one condition. I know how deeply it impacts every aspect of my life, from my relationships to my job. Fibro just seems like…what fresh hell is this? I know how you get through it – you have to, and do you do – but I am in such awe of your strength and willpower. Keep fighting, my friends.
Do any of my readers have fibro? I would love it if you could share your experiences with diagnosis, treatments, and just life with fibro generally in the comments.
I’ve written a lot about endometriosis. I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis. Now I want to write a little series on other chronic conditions that often appear alongside endometriosis. Today, it’s polycystic ovarian syndrome, aka PCOS.
What is PCOS? Well, it’s a condition whereby the ovaries become enlarged and prone to cysts. Tiny little follicles grow on the ovaries, containing partially formed eggs that rarely grow to maturity or become fertile. The body produces too much insulin and androgen (a male hormone).
PCOS can cause weight gain, excessive hair growth on the body, hair loss on the scalp, depression, sleep apnea, acne, pain, infertility , increased likelihood of diabetes, and irregular periods. It’s a nasty disease and the side effects (wrongly) carry a lot of social stigma.
Like adeno and endo, no one is really 100% sure what causes PCOS. It does appear to run in families and is more likely to effect women who are overweight, but neither of these is a guarantee of getting it, nor are slender people with no family history automatically exempt. What we do know is estimates suggest it could effect as many as 20% of people with ovaries of reproductive age, and often goes undiagnosed.
As with any disease where weight increase is both a symptom and increases the risk of either contracting the disease or exacerbating the symptoms, doctors will urge sufferers to make healthy lifestyle choices, particularly around diet and exercise. Not for a moment will I pretend this is a bad idea. Sufferers can achieve significant relief from symptoms with only a small amount of weight loss (which sounds a lot easier than it is when your own body is fighting you every step of the way). However, I do urge people not to allow doctors to attribute everything to their weight and offer no other assistance. Hormonal treatments can also be an important part of dealing with PCOS, both to block and to raise different hormones.
It’s also a good idea to have a mental health professional as part of your treating team. Dealing with difficult symptoms that our society wrongly but consistently perceives as “gross” or symbolic of laziness is hard enough. Dealing with a disease that also can cause depression is an extra battle you shouldn’t have to fight alone.
Before you can start to be effectively treated, however, you need to be diagnosed. There is no 100% guaranteed method of diagnosis. Scans may show cysts on your ovaries, but you can have ovarian cysts without having PCOS. Likewise, you can have PCOS but not have anything visible on scans. You can also have blood tests that will look at hormone levels in your blood to see what, if anything, is elevated. Like endo, though, it can just be a lot of guesswork and diagnoses are often based purely of reported symptoms.
Endometriosis and PCOS, unfortunately, often travel in packs, and it is relatively common to have both. However, plenty of people only deal with one or the other. I’m lucky enough not to have had to deal with PCOS. I have friends, acquaintances and possibly family members with it, and their experiences have ranged from annoying to devastating. Have any of my readers experienced PCOS? What was your path to diagnosis? If anyone wants to write a guest post about how PCOS really feels on a day to day basis, I’d love to publish it.
I’ve written a lot about endometriosis. I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis. Now I want to write a little series on other chronic conditions that often appear alongside endometriosis. Today, it’s endometriosis’ sister, adenomyosis.
A week ago I mentioned that I have a tentative diagnosis of adenomyosis. My doctor suggested this after surgery has failed to resolve my pain and swelling despite all endometriosis having been removed and nerve pain being largely ruled out. He is the first to suggest that adenomyosis may be mucking around in my uterus.
But what is adenomyosis, aka adeno?
Well, you know how endo is when endometrium-like material grows wherever it wants instead of where it should? Adenomyosis is where it grows inside the uterine wall. Not inside the uterus, where it could be handily dug out, but inside the muscle wall itself.
I’m told it’s in the name – adeno (gland), myo (muscle) and osis (condition).
Like endo, adeno can only properly be diagnosed through surgery, although symptoms, transvaginal ultrasounds and MRIs can all offer diagnostic clues.
Symptoms are similar to those of endo – bleeding, pain, swelling. The usual culprits. It usually appears hand in hand with endo, but not always. You can have just one or the other. It can also be masked by the presence of endometriosis. The possibility of me having it wasn’t even raised by doctors until we were sure all my endo was gone and I was still having pain.
Unfortunately, the fact that it is buried inside the wall of an organ is problematic when it comes to treatment. Endo, at least, only requires the sufferer to have some holes bored in their abdomen so surgeons can get into the pelvic cavity. On the plus side, adeno can be cured by a hysterectomy, unlike endo. Other treatments include IUDs, menopause, and keyhole surgery.
Surgery itself comes in a variety of forms for adeno. As mentioned, there’s a full-blown hysterectomy (typically a last resort). Another option is uterine artery embolisation, or UAE, which blocks the two main arteries supplying blood to the uterus. With these blocked, bloodflow is significantly reduced (although not totally inhibited) and the adeno is also starved of blood. It’s not a cure and it may require repeat surgeries.
The other option is myometrium resection, or adenomyoma resection, which focuses on the removal of large clumps of adeno, known as adenomyoma. Unfortunately, it targets only those clumps and won’t get tiny bits scattered across the uterus. It can improve pain and fertility, but also carries the risk of the uterine muscle being torn or weakened, and may increase the risk of miscarriage. As usual, all our treatment options are an exercise in trade-offs.
What causes it? Well, like endo, that is something of a mystery. Current wisdom indicates that some type of trauma to the uterus, such a childbirth or surgery (such as removal of endometriosis) can encourage it. Isn’t that a fun piece of irony?
All in all, there’s a lot of similarities with endometriosis, and not in a good way. To most endometriosis sufferers, I suspect being told they also have adenomyosis will just feel like another hurdle in a very long and bumpy road rather than a new road altogether. For others, it will be devastating news – here’s another lifelong illness. I’ll admit I shed some tears.
For me, the next step is to get my pain more under control and confirm the diagnosis so we can respond as effectively as possible. I’ll keep the blog updated on how things go.
Do any of my readers also suffer adeno, or suffer it without endo? What have your experiences been? I’d love to learn more as I’m very new to this.
One of my favourite stories in the Bible, probably for obvious reasons, is when the woman with chronic menstrual issues pushes through a throng of people surrounding Jesus, saying to herself, “if I can just touch the hem of his cloak, I’ll be healed.” She was desperate for healing, which resonates with me deeply. She was also incredibly brave – as she couldn’t stop menstruating, she was ritually unclean and was forbidden from mingling with society, let alone touching a rabbi. So she was also socially isolated and, I suspect, depressed and taking quite the hit to her self-esteem. Uniquely (to my admittedly less-than-professional biblical knowledge), she doesn’t ask Jesus for healing. She touches him, filled with unshakeable faith, and his power flows out of him and heals her. Her courage and faith heal her. It’s a story that thrills and inspires me, because I can so strongly imagine what she felt, and I can aspire to have her conviction.
What I mean to say with my long-winded introduction is that the Bible, and Jesus (who commends the woman) have a place for the chronically ill and the beaten down. Unfortunately, sometimes the church doesn’t. It almost always comes from a place of goodwill, but it still hurts when they get it wrong. I’ve been mostly lucky in my church – things that have hurt me have been things said by well-meaning people in general conversation, rather than directed to me, but I draw from the experience of many people in writing this, and they have all been wounded by it. That’s why I want to talk about how churches and Christians in general can be more welcoming to the chronically ill. Below I offer three don’ts and three dos as to how Christians can achieve that goal.
1) Don’t resort to platitudes
This is a good tip for anyone when responding to the chronically ill (or anyone enduring any sort of suffering, from anxiety to grief), but I think Christians are the worst at it because we have an entire book of handy phrases neatly packaged up in the form of the Bible. Many of those verses are great, but they all have a time and a context, and usually they aren’t appropriate to say to us. Here’s some examples that I don’t think are helpful:-
- Verses about God’s ways being higher than our ways so we can’t know the meaning of things;
- Verses about there being a time and a season;
- Verses about God’s healing;
- Verses about how suffering is to teach lessons.
There are probably others, but those are the main culprits. The reasons that these aren’t helpful is that we know God’s ways are higher than our ways. Telling us that is not comforting. I adore the poetry of Ecclesiastes, but telling us that there is a time and a season is not helpful to the chronically ill because our whole lives are going to be the time and the season. We know the verses about God’s healing, but the healing itself is not being shared with us right now. Finally, the idea that we might learn something from our intense pain does nothing to counteract the, you know, intense pain. It would have to be a truly mind-blowing lesson to be anything close to worth it.
2) Don’t tell us that we are Christianing wrong
Some Christians take the view that either:-
- We sick because we sinned; or
- We aren’t getting better because we aren’t praying hard enough.
Wrong. Wrong and unbiblical. Just as we aren’t matyrs who suffer to learn great spiritual truth, we’re also no worse than anyone else. We all sin. We don’t all have chronic illnesses. Job was one of the most righteous men in the bible, and he lost his home, his family, his wealth, his friends, and his health in two devastating attacks. In John 9, Jesus specifically said that the man born blind was not blind because of any sin he or his family had committed. Bad things happen to good people and vice versa. We are not cursed or unclean or any more sinful than you. We’re just sick.
Likewise, God doesn’t necessarily hand out a free healing to those who get enough stamps on their loyalty prayer card. Paul writes in 2 Corinthians 12 that he begged the Lord to heal “the thorn in his flesh,” and the Lord refused. Is anyone honestly going to suggest it was because Paul, possibly the most influential Christian in history, lacked faith? Sometimes – often – God doesn’t heal. I don’t know why, but I do know that it isn’t the fault of the person begging for healing.
Saying these kind of things isn’t just unhelpful and inaccurate, it’s damaging. If people believe you when you say this, they are going to feel inadequate, rejected by the church and by God, and you will deal a horrible blow to their faith. Stop it.
3) Don’t publicly pray for us unless we request it, or force us into group prayer sessions
It is nice to be remembered in people’s prayers, but please don’t pray for us in the congregational prayer without at least checking with us that it’s ok. Some people aren’t “out” about their chronic illness. Some people just don’t want to be the centre of attention, or have unnecessary attention drawn to their illness. It can lead to embarrassing and intrusive questions at the end of the service that we may not want to field.
Likewise, being drawn into a group prayer session, or even a one-on-one prayer for healing can be embarrassing. It creates this expectation of healing, and if it doesn’t work, you run the risk of people doing something from point 2. If the sick person is fine with it, go for it, but please make sure that they are actually fine with it and don’t feel pressured into it. If they say no, or seem uneasy, please drop it and ask if you can just pray for them on your own.
4) Do make church accessible (not just for the chronically ill)
Have an ambulant toilet (near the other toilets, not down a corridor, through an office and behind a locked door that you need an elder to open). Have spaces for wheelchairs. Have nice cushy seats for people with pain. Have braille on the toilet door. See if a church member speaks Auslan and is willing to interpret, or project the points the pastor is making onto a screen. Make your church camps, getaways, meetups and breakfasts at times and locations that sick people can attend.
For me, the biggest thing is good seats. I cannot sit on the usual school chairs and benches most churches provide without a lot of pain after a very short time. Having some comfier chairs at the back of the church – not out in the foyer so I have to watch through the doors! – can make the difference between me being able to go to church and not.
5) Do offer practical assistance
It’s all well and good to pray for someone. Indeed, God commands it. He also praises people engaging in practical acts of service. Perhaps you could cook them a couple of freezer meals, or ask if they need any help around the house, or check if they need a lift to and from church on Sundays. Those are all small things that could make a huge difference. Just don’t make a big deal out of it – treat your sick fellows like everyone else in the church. We should all be serving each other in whatever way we can.
6) Do represent the sick and disabled
Whether by having sick/disabled people on the ministry team or praising them for their courage and strength in sermons, represent us in the church. Don’t glorify us or turn us into inspiration porn, but preach on that woman with the menstruation problems. Preach on the lepers and the blind. Show that Jesus loved the sick and disabled too, and show that we are people, not just parables. Keep us human, and keep us involved.
That’s my list of quick tips for the inclusive Christian. Do you agree with these points? What do you wish your church would do to make it a more inclusive space? What good things is it already doing? Do any of my readers from other religions or groups have similar experiences? Let me know in the comments.
Early in January I talked about a number of quotes about hope that I’d been writing down. It’s a practice I’ve continued throughout January and intend to keep up all year with various themes that seem applicable and relevant to my life. Next month will be courage.
This isn’t really a proper post so much as a list, but I thought I’d put all 31 of my quotes for the month here in case anyone needed some inspiration. For completeness sake I will also include the quotes from my last post. I won’t explain my thoughts on them all this time: this is just for reference in case you need a quick little soundbite of hope.
All of these quotes represent, to me, an important aspect of hope. Hope warms, it empowers, it pushes you on. It is really hard to do. It can spark revolutions or just make a hard day a little easier. It is something we have the power to share.
- “I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re doing something.” – Neil Gaiman
- “Hope smiles from the threshold of the year to come, whispering, “it will be better.”” – Alfred, Lord Tennyson
- ““Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.”
– Emily Dickinson
“Hope is being able to see that there is light despite all of the darkness.” – Desmond Tutu
“We must accept finite disappointment, but never lose infinite hope.” – Martin Luther King Jr.
- “There never was a night or a problem that could defeat sunrise or hope.” – Bernard Williams
- “Though hope is frail, it’s hard to kill.” – When You Believe, The Prince of Egypt
- “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” – Helen Keller
- “Fairytales are more than true – not because they tell us dragons exist, but because they tell tell us dragons can be defeated.” – Neil Gaiman, misquoting C K Chesterton
- “I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.” – Robert Fulghum
- “While there is life, there is hope.” – Marcus Tullius Cicero
- “I don’t think of all the misery, but of the beauty that still remains.” – Anne Frank
- “Everything that is done in this world is done by hope.” – Martin Luther
- “We must free ourselves of the hope that the seas will ever rest. We must learn to sail in high winds.” – Aristotle Onassis
- “There is nothing like a dream to create the future.” – Victor Hugo
- “Carve a tunnel of hope through the dark mountain of disappointment.” – Martin Luther King Jr.
- “Hope means hoping when things are hopeless, or it is no virtue at all…As long as matters are really hopeful, hope is mere flattery or platitude; it is only when everything is hopeless that hope begins to be a strength.” – C K Chesterton
- “Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow them.” – Louisa May Alcott
- “May your choices reflect your hopes, not your fears.” – Nelson Mandela
- “I dwell in possibility.” – Emily Dickinson
- “When I’m stuck with a day that’s grey and lonely, I just stick out my chin and grin and say: the sun’ll come out tomorrow, so you’ve got to hang on til tomorrow, come what may! Tomorrow, tomorrow, I love ya, tomorrow, you’re always a day away.” – Annie
- “Hope is passion for what is possible.” – Soren Kierkegaard
- “If you lose hope, somehow you lose the vitality that keeps moving, you lose the courage to be, that quality that helps you go on in spite of it all. And so today, I still have a dream.” – Martin Luther King Jr.
- “This new day is too dear, with its hopes and invitations, to waste a moment on the yesterdays.” – Ralph Waldo Emerson
- “A leader is a dealer in hope.” – Napoleon Bonaparte
- “Hope is like the sun, which, as we journey towards it, casts the shadow of our burden behind us.” – Samuel Smiles
- “Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” – Albert Einstein
- “You are not here merely to make a living. You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world, and you impoverish yourself if you forget the errand.” – Woodrow Wilson
- “Where there’s tea there’s hope.” – Arthur Wing Pinero
- “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other form a million different centres of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.” – Robert Kennedy
- “You may not always have a comfortable life and you will not always be able to solve all the world’s problems at once, but don’t ever underestimate the importance you can have, because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama
In the spirit of keeping some positivity in what could otherwise be a fairly gloomy blog, this year I want to commit to finishing each month with a post on things I am grateful for that month. I’m going to push myself to list ten things per month and to look for the silver lining even in the bad things.
Not every bad thing will have a silver lining, and some months will have far more good than bad, but I like being happy and I am trying to wire my brain to go to a happy place more than a sad place.
Before I begin, I want to note that I do not want the fact that I or other chronically ill bloggers do this as a stick to bludgeon those who don’t. Depression and anxiety can’t be cured simply by “choosing happiness,” and the realities of chronic illness are that happiness can be hard to find. It is not the duty of the ill to be positive.
This sickly sausage, however, is going to try. Without further ado, this is what I’m grateful for in January:
1) Three weeks of holiday
As readers will know, last year I made a very quick and terrifying decision to leave my old job and go into a different role. Between leaving the old and starting the new, I had about three weeks without work. This let me relax properly, let go of the tension that I had built up during the year, get on top of some outstanding domestic tasks, and really focus on my health. I was able to use the time to run, swim, sleep, play computer games, take mornings slowly. I was able to build some good habits around fitness, getting 5,000 steps a day and doing some form of exercise daily, even just walking the dog (who was delighted to have me home).
2) Beach time
After not having gone to the beach in ages, in January I got to go twice. I love being at the sea, swimming, diving, smelling the salt air and hunting for tiny fish to watch. My husband reintroduced me to boogie boarding, which I hadn’t done since I was a little girl. I’d forgotten how fun it is!
We also discovered that our dog hates the ocean, possibly because she is so stumpy.
3) My new job
Nice as my break was, paid employment is a privilege. Even more important than my income, however, is that my new job is interesting and challenging – I’ve never done anything like this before and I’m actually really enjoying it. Equally important is that my colleagues are truly lovely. I do miss my old work besties, but we still chat regularly on facebook and in the meantime, I’m building relationships with (mostly) women I already admire and respect.
4) My catio
One of my Christmas presents from my parents was some money to put towards an outdoor enclosure for my beautiful, noisy, pest of a cat. This 1.8m enclosure lets him feel the wind in his whiskers whilst staying safe from the various perils of cars, dogs, and other cats. It also stops him from terrorising the local wildlife. His favourite outdoor activity is eating the grass.
I think its super cool and I can’t wait to deck it out with more stuff for him.
My dog may be scared of storms, but I love them. I love watching the horizon glow with sheet lightning, or see bolts flash and crackle across the sky. Summer thunderstorms here are brief but generally very impressive.
6) New Pathways
Some news that I haven’t yet shared on this blog is that I was recently given a tentative additional diagnosis of adenomyosis. I’ll blog more later on what that is and how it affects the sufferer, but for now I am focussing on this: my ongoing post-surgery pain has a possible explanation, and therefore a possible treatment pathway. I’m not just a weirdo and my surgery wasn’t a waste of money.
7) My parents’ lovely Czech neighbour
He gave them a whole bunch of plums from his garden, which is an act of sweet neighbourliness that I just love, and I profited because my parents passed some on to me.
8) My new diaries
I’ve talked previously about my cool new diary set from Leaders in Heels. I’ve really loved how they’ve worked for me throughout January to keep me motivated and organised, whilst still giving me space to doodle and journal.
9) Fun hair
I bought a bunch of wigs recently. Some were purchased last year during my horrible experience with tramadol. Some were purchased in January when I realised I love wigs.
It’s too hot at the moment to take advantage of them, but this year I’ll be able to change my hair up easily and without having to commit to a different style or colour. Exciting stuff.
10) How privileged this list is
The fact that I can celebrate these small, trivial things like wigs and plums is because I was born into and continue to live a white, middle-class life in a developed nation. When I turn a tap, I take it for granted that I will immediately see clean water. When I open the pantry, it might not have as much chocolate as I’d like, but it will certainly have food (usually 16 million tins of diced tomatoes, for reasons I don’t fully understand). I am highly educated, I have a stable job, and I am not persecuted for my gender, religion or anything else. My government may change PM more often than I change jackets, but we are unlikely to see coups or major bouts of civil unrest. I am safe.
What are you grateful for this month? Do you keep a gratitude diary or something similar?
I know my blog has a far-reaching reputation as a bastion of glamour, elegance, and good taste, so I thought I should bolster that further with yet another fun post on bodily functions.
Despite attempts by brands like Tena to normalise incontinence, it remains a deeply embarrassing thing to suffer from. I think society associates it with either children, and therefore childishness, or age, and therefore senility. When people do give serious thought to it, the discussion tends to focus almost entirely on people who have recently given birth and suffer incontinence as a result. In reality, however, people of all ages and biological makeup suffer incontinence.
Broadly speaking, there are two types: stress and urge. Stress incontinence is where it happens as a result of some sort of trigger to the bladder – sneezing, coughing, laughing, running, lifting something etc. Urge incontinence is where you can’t control your bladder’s urges and it just goes, regardless of the inconvenience to you. I speak from the perspective of someone who has suffered both since I was around five years old. I’ve lost bladder control from almost every conceivable action. I wet the bed relatively regularly all through childhood, and with gradually decreasing regularity into early adulthood. I lost control and wet myself at school, at church, on excursions, at the beach, in shopping centres – anywhere I went there was a chance it could happen.
Now I’m in my late twenties and the situation has improved dramatically, without any sort of useful medical intervention. I had a multitude of tests as a child, none of which resulted in anything other than a diagnosis of urinary incontinence and some horrible-tasting and useless medications. It isn’t related to my endo, although I do have endo on the urethra, and many people with endo do report incontinence as a symptom.
What I want to share with you are some useful tips I’ve learnt over twenty years of dealing with this pesky condition.
1) Pads and protection
This may seem super basic, but honestly, just giving up and wearing pads or undies designed with built-in protection (such as Icon, my preferred brand – good for light leakage only, though!) made such a difference. I used to be a Tena devotee and I think they are probably still the better brand for really big problems. However, as things have improved for me I’ve been able to move to the thinner, cheaper Poise. Importantly, these items are all able to deal with a period as well, but have better wicking and odour-disguising properties.
For those with issues at night, Tena and Poise both offer thicker pads or nappy-type options, but I’ve never found those terribly comfortable. A better option for me was a washable waterproof pad by Slumberdry that I could slip into bed and would protect my sheets if things went wrong. When you’re half asleep and exhausted, you don’t want to have to deal with a full bed change – these pads are great because you just whip out the wet one, chuck a clean one on and go back to sleep. Whilst I no longer used one, these were amazingly helpful when my overnight issues were at their worst. They are marketed for children (once again, a false impression about incontinence) but there is no reason adults can’t use them. The only downside for couples is you might find they protrude onto your partner’s side of the bed. These are also a great, discreet-ish option for travel that fold easily into a suitcase and save you the embarrassment of having an issue on hotel bedding.
2) Keeping supplies on hand
Throughout all my school years, my mum made me take a little bag with spare undies and a plastic bag for the dirty knickers in it to school just in case I had an accident. It was deeply embarrassing but also extremely necessary. It’s not a bad idea as an adult, either. There are a myriad of situations in which spare underpants are useful – maybe it was a hot day and you had to run to catch the work bus and by the time you get in you are just so sweaty, or a sister gets her period unexpectedly, or you spill coffee all over your trousers, or you get hospitalised and there’s no one in town to bring you an overnight bag. Clean undies are just really useful things to have. I carry a little bag of Poise, too, just in case.
3) Make knowing the location of the loos a priority
If you are going somewhere for the first time, take note of public loos. On long road trips, mark of petrol stations for regular, pre-emptive bladder strikes. Walking through a shopping centre, note any and all signs that point to the water closet. Preparation Prevents Piddling all over yourself, as the saying goes.
4) Don’t wear jumpsuits, playsuits or rompers
Just don’t. They are cute and all, but getting caught short by your own clothing isn’t cool. Been there and very much done that.
5) Tell people you can trust
It is embarrassing as all heck to tell someone you have poor bladder control, but having a stalwart sidekick who will watch your back, hustle you to the toilet, or sacrifice a jumper to tie around your waist if things don’t go according to plan is such a valuable and heart-warming thing. They’ll be the one to raise the issue of toilet stops on a road trip to hide the fact that it’s always you who needs to pee, double check that you packed enough underwear, and translate that panicked look you get when you laugh too hard and feel something let go.
These are all good tips for parents whose children suffer incontinence, too. Keep them well supplied and give them the tools they need to be able to handle a quick bed change at night – you’ll get more sleep that way too. Check toilet locations, and give them easy-to-escape from clothing. With their permission, tell their teachers so they don’t get refused permission to go to the toilet at school, or get detention for being late to class because they had to pee again. Most of all, build their confidence. Don’t let them feel dirty, defective or unworthy, because other children will do that plenty if their secret comes out.
Anyone else have any tips or tricks? What have your experiences with incontinence been?
It was June 2016 that I was first diagnosed with endometriosis. Since then I have learned a lot of things that I desperately wish I could go back and tell that young woman. If I could, these are some of the things I’d really want her to know. Some of them are personal to me, but most of them have fairly general applicability.
1) Don’t go to that doctor
I had no idea back then that there were different types of gynaecological specialities. I thought it was all much of a muchness. I was originally diagnosed and operated on by a fertility specialist. Whilst she knew about endometriosis, as any gynaecologist should, endometriosis was not her primary area. I don’t know if my increase in suffering after that operation was due to a lack of knowledge and skill on her part, her preference for surgery rather than attempting to manage the condition with medication first, or simply something that would have happened regardless of who I saw. Whichever, I wish I’d seen someone else, because when the problems arose, she was stumped and essentially told me she had no idea how to help me. Which leads me to…
2) Don’t have the surgery
I honestly thought I’d tried every medication I could to reduce my period pain and that surgery was the only option open to me now (an illusion that the abovementioned doctor did nothing to dispel). Whilst surgery is incredibly useful for many people, it was devastating for me and I wish I had been given other alternatives to at least try.
3) Find a doctor that you can trust
I don’t know if I could have done anything about this sooner than I did, because it took a while for me to realise each medical relationship wasn’t working, but I wish I had been with Dr Edi-Osagie from the start. I have yet to present a problem that he hasn’t been willing to try and beat or said something he hasn’t listened to. Previous doctors have either been stumped by my issues or decided that they’ve given me sufficient quality of life and I just need to be satisfied with that. I’m not, and neither is Dr Edi-Osagie. I trust him, and that’s a big deal.
4) Trust yourself more
Endometriosis is one of those diseases that plays tricks on your mind. There’s few visible symptoms, and people around you question and downplay your pain. This makes it very easy to doubt what you are feeling and convince yourself that you are wrong about the severity of your pain and the appropriateness of your reaction to it. The gaslighting effect is horrible and I think it causes delays in getting effective treatment. If I had had more trust in myself, I may not have had a better medical outcome, but I would have been a lot happier.
5) Be prepared for physical changes
I’ve been really struggling with body image (again) lately. Being in menopause has me putting on weight even though I’m exercising regularly and eating well (and yes, my caloric output exceeds my input by a decent margin). Between that and the swelling, I feel a bit like a pig, only without their body confidence and contentment. I wish I could brace my old self for those changes and revel in the body I had while I had it. Not just for looks, too – I’d take it for more runs just to feel the power in my legs, and lift more weights to experience that satisfying burn in my arms.
6) Do your research in the right places
Scouring WebMD for the clinical definition of endo doesn’t prepare you for what it is actually like. Even the list of symptoms is not exhaustive, and some website actually provide complete misinformation (the most common being that pregnancy or hysterectomy will cure you). The best source of information I have ever found is my local endo support group. I have learned so much from them and I should have joined and engaged the second I was diagnosed, checked if I was seeing the right doctor and being given accurate advice, and built connections with women who could help me.
7) Do better record-keeping
This is still something I could improve upon. Record-keeping on both a micro and macro level is really useful. By macro I mean having all your medical records collated and a timeline of major events (diagnoses, procedures, dates of starting and stopping medication). This makes it super easy for you and your doctors to review your history at a glance. By micro, I mean tracking your food, sleep, stress, exercise, mood and pain. This helps alert you to trends and triggers, which teaches you how to help yourself better by avoiding stuff that hurts and engaging in stuff that helps.
8) Understand that your life will change
The biggest thing I was unprepared for was how much I wouldn’t be able to do. I took it for granted that I could sit at a desk for hours at a time, walk 5km and then eat a garlicky meal with onions and beans. I took it for granted that I could shower at the end of a long day. Never did I think I’d become an occasional wheelchair user. I thought I’d be diagnosed, cured, and that was that. In fact…
9) Realise that a diagnosis is just the beginning
If you get a diagnosis and if that diagnosis is confirmed, that is not the beginning of the end. It is not as simple, sadly, as problem then solution. It is problem then several attempts at solutions and then many sub-problems, all requiring different solutions, some of which are in conflict with each other. It is not a simple journey, and while a diagnosis offers some hope, it is not a fait accompli from thereon out. I want to go back and seriously manage 25-year-old me’s expectations.
10) A diagnosis is not the end
I cried the day I was diagnosed. It is scary being told that you have a disease that you didn’t know was there, even if you expected it. It is even scarier realising that you have it for life. I cannot properly convey the enormity of that. It’s not the end, though. Life may be very, very different after a diagnosis, and it may well be harder, but you also learn a lot of things about love, true friendship, your own abilities and limits, and weird medical facts. You have to change your life in a hundred annoying ways, but it does become the new normal and you learn to live with the differences. Endo is chronic but not terminal. While there’s life, there’s hope.
What do you wish you could say to your younger, pre-diagnosis self? Would you do anything differently?