Pain Management: Update on Life with IBS and adenomyosis

I haven’t written about what it’s like living with IBS and adenomyosis for quite sometime. It’s been awhile so I thought I might just write about my journey now that I’m 24 and quite a bit has changed.

Firstly, I have been seeing a dietician off and on ever since I was diagnosed with irritable bowel syndrome (IBS) in late 2018/early 2019. I’ve had a few colonoscopies, approximately 3 that I can remember, although it could be 4. I’ve had 2 MRIs for my bowel involving the use of contrast, which was a somewhat inconclusive test costing me $600 out-of-pocket for each MRI. It’s honestly been a challenging journey. Since I was diagnosed, I’ve gained a significant amount of weight which has been difficult to shed given the lockdowns in 2020 and 2021. The lockdowns also meant I developed poor eating habits and became much more comfortable using food delivery services like UberEats which only worsened my weight gain. Having IBS has meant I rely on products like benefiber to help regulate my gut and made it difficult to try different foods without being riddled with anxiety. Navigating my 20s with IBS has been challenging both in a social sense, as well as in my career. It’s impacted my relationships with family members and significant others because it’s been a factor which contributes to my anxiety. In recent years I have relaxed a lot more and tried to experiment with my diet, however it’s still been a struggle. Additionally, I had iron deficiency issues which meant in late 2021-early 2022, I had to take iron tablets for 6 months which negatively impacted my gut. This also meant I tried to increase my dietary intake of foods containing iron, leading me to eat foods like sardines, chickpeas and beef. I have a few sessions a year to see a dietician which is free (apart from the first consult) covered in a care plan provided by my general practitioner. However, some of these sessions have been diverted to a podiatrist after I learnt I had developed a bunion!

I can’t say a bunion is an ongoing chronic illness, but it does cause severe pain in waves and can be quite debilitating if you have them on both feet. At present, I’m seeing a podiatrist to explore all conservative measures before considering surgery. This has meant investing into orthotic shoes, toe separators and inner soles. All of which aren’t really attractive or cheap.

My adenomyosis has worsened significantly in the past few years. I’ve noticed my periods are much more heavier and the pain has intensified dramatically. It’s been a much more mentally and physically painful ordeal managing my adenomyosis in the last few years then my IBS in many ways. Although my IBS pain is constant, there are countermeasures I can take to reduce my pain (such as exercise). In contrast, the pain management methods to assist with my adenomyosis only feels like a band-aid solution. Since being diagnosed, and now I have heavier periods, I’ve tried switching to reusable pads which has financially helped in some ways. I have considered exploring other pain management methods instead of just using the pill, however, I’m still re-evaluating what I should do next to minimise the pain. I’m noticing my levels of fatigue increase, even if I exercise. I believe it’s probably just the compounding effects of having both IBS and adenomyosis. There have been further updates regarding my adenomyosis but I’m not ready to write about it just yet.

Journal Entry 25: real talk

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I started a new job recently and it’s the first full-time job I’ve ever gotten. It’s honestly been quite challenging navigating working within a space where I don’t feel welcomed. I really only can relate or connect to a few people within the organisation. Additionally, I’m struggling to learn since the organisation is understaffed which really isn’t there fault. The pandemic has really transformed different workplaces. Most of my anxiety stems from imposter syndrome and this feeling that I don’t belong. Since I’ve been feeling pretty low I’ve decided to go back to group therapy and see if I can let some of these negative feelings out in a productive and safe space. I feel really lucky to access resources and I’m hopeful that I can turn these negative feelings into a positive experience or a valuable learning lesson.

I’ve been realising I need to do more for my mental and physical health. I have been talking about going back to the gym and swimming for awhile but since I’ve only just started working at my new workplace, getting into a routine and maintaining my schedule has been pretty tricky. I’m hoping once things settle down, I can eventually get back to it and incorporate other activities into my daily life. I feel going back to therapy is the first step that I need to take to get back on the right track. I’ve also decided I need to get back into journaling. I think since my job requires confidentiality, I’ll be writing a bit more by hand which isn’t something I’ve done for years. I feel really positive about being able to identify that I’m really struggling because I’d prefer to be honest with myself than to push down these negative feelings.

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The past few weeks have actually been pretty hard. I’ve cut off two friends, changed jobs and stopped volunteering for an organisation that I really loved. I feel good about cutting off my friends for a variety of reasons. Mainly, I feel I’m trying to better my communication skills but also I’m sick of being a bit of a pushover. I used to be a non-confrontational person but I also feel vocalising my feelings is really important. I want to make sure I’m happy or at least doing all I can to get to that point. Sometimes cutting out negative people is all you can do if they don’t bother rectifying or acknowledging their own poor behaviour. I’m not saying I’m perfect but when I do realise I’ve done something wrong, I try to acknowledge it and fix it in therapy.

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I submitted an application at university for a course I think I will really enjoy. I feel good knowing I can still work full-time whilst studying and I’m hoping to receive an offer for next semester. I feel this is the first step towards creating a future for myself that I want. After gaining workplace experience outside of university, I feel really positive that I know what I want out of another degree. I’m still applying for volunteer work on the weekends since I want to make sure I’m still giving back to the community through unpaid work. I also still teach ESL on the weekends restarting again next week which makes me feel productive and positive.

Even though there’s a lot of not so fun stuff happening in my life, I do think there’s a lot to look forward to. I bought a polaroid camera which I’ve literally been wanting for years. I want to make sure I’m living in the present and capturing precious moments with my friends. I’ve also started looking for new apartments as my current living situation is contributing to my negative feelings.

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After all the trauma, there was a lot of healing that took place. Initially I was in a state of disarray but once that dissipated, I spent so much time reflecting on my actions and what I want to do with myself. Graduating and giving back to the community allowed me to find purpose during a really dark period in my life. Apart of me is afraid my community work is just away to escape the pain and trauma. Apart of me also believes it’s away to find meaning. In the past few days I’ve come to realise I have learnt from the experience. I do think grief stays with us but we find ways to turn it into something beautiful.

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Journal Entry 18: marriage

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I always envisioned I’d be married if I ever found myself pregnant. Instead, I was in a broken relationship/situationship. We discussed marriage at length and a shotgun wedding wasn’t something we both wanted to do. I guess in retrospect I think we made the right decision considering our rocky relationship. We both also came from a tumultuous upbringing and I think it shaped and informed our decisions.

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Watching my parents navigate their marriage growing up was traumatic. As a child, interpreting the constant fights was difficult, as an adult it’s even worse fully understanding the weight and gravity behind their words. My dad was an abusive person and I can still remember how he’d constantly say derogatory sexist and racist slurs towards my mother, whilst my mother was the epitome of ‘the good housewife.’ My mother was submissive, non-argumentative and essentially, my fathers maid. It wasn’t a marriage between two equals. Despite my mother essentially agreeing to a life of servitude, she was an independent woman before she married my father. She was earning her own income and travelled with her friends.

I often blame my parents corrosive marriage for my own mistakes in previous relationships. After spending so much time in therapy talking about my relationships, it has been good to finally take ownership and responsibility over my own poor decisions. Sometimes, you just can’t run away from your mistakes.

All of this shaped the person I am today. In fact, it makes me much more cautious when thinking about marriage now as an adult. People change and that’s just the hard reality I’ve got to accept. Sometimes, you know someone and once you’re married they change. Marriage isn’t like in the movies. It’s not like some fairytale story.

Marriage is a commitment. I almost admire people who get married young and stay married until they become old and grey. That’s the dream isn’t it?

Maybe it’s not actually the dream. Maybe the couples who stay together ‘forever’ aren’t actually all that happy. Maybe they stayed in a miserable marriage for decades just for the sake of their kids. Maybe they stayed together because it wasn’t financially feasible for them to get a divorce. Who even knows.

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I really thought we’d get married. Despite our differences, I still thought we fundamentally loved each other. Maybe getting pregnant changed all that. Maybe it was me. Maybe I was just afraid to live in the real world and that’s what broke us. My anxiety was so debilitating I feel I was living in a perfectly curated world of my own making. I let my anxiety engulf me. Maybe it wasn’t that at all. Maybe it’s just because I’m dismissive. Maybe it’s my complete inability to communicate. Maybe I’m just overthinking.

It was hard letting go of a reality in which we’d have a baby together. Maybe that would still be our reality if I didn’t let fear control me. We’d be in a different reality where we’d actually coparent. One where we’d be forced to communicate properly for the benefit of our kid. A reality in which maybe we’d both find happiness. Maybe we’d both be miserable but I’ll never know for sure. All I know is that being a mixed kid in Australia isn’t all that fun and maybe our baby would’ve had the same experiences and struggles I had. Maybe they too would’ve experienced racism. Maybe they too would’ve experienced what it is like to come from a poor background because we were stupid enough to bring a kid into this world without any money. That’s what it all comes down to in the end, money.

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I never knew how to tell you. I felt like the bearer of bad news. I knew you didn’t want a baby and yet it happened. I felt confused and lost because I myself didn’t know what I wanted. I didn’t know what to do with myself. I didn’t know how I could possibly look after myself and a baby. I didn’t know how to communicate my feelings or thoughts. I didn’t know how to make a mature and responsible decision.

Our lives would be forever changed by my decisions. Decisions that cannot be reversed. If I could go back in time, maybe I’d do things differently. Maybe.

Journal Entry 15: testing positive

After evading COVID-19 for over 2 and a half years, I’ve finally tested COVID positive. I took an RAT on Tuesday which came back negative and then another today which came back positive. Moral of the story is, if you have symptoms listen to government rules and regulations, stay home and either get a PCR test or do multiple RATs.

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I changed Masters courses and ultimately decided to defer for a semester to get experience and understand what it’s like living in the real adult world. I love university and I also love studying however, sometimes being at University makes me feel like I’m removed from society. The theoretical concepts can at times be hard to apply to the real world, hence why I ultimately decided to change my masters program and defer. After deferring, I do feel much more confident in the degree I am choosing to pursue next semester.

I prefer to take my time instead of rushing into something I don’t enjoy or can’t fully commit to. After graduating a 3.5 year degree I genuinely thought changing into a different sector was what I wanted. In actuality, I think gaining volunteer experience has only solidified my stance and love for the humanitarian sector. I’ve learnt a lot over the past few months. I’ve learnt a lot about myself, about others and their experiences, but also about the world around me.

I love working and volunteering. Although both can be emotionally exhausting and challenging, especially when managing angry customers, it’s also rewarding and exciting. I really do love this new chapter in my life and the elements of freedom that come along with it. I do feel like I’m appreciated and valued for my volunteer work which is really important to me.

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I haven’t been able to see my personal therapist for awhile due to scheduling issues but I’ll be back in therapy next week which I’m excited for. I feel like I haven’t really invested much into myself and therapy is a personal investment into my own mental health.

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I’m actually relieved my COVID RAT turned out positive for COVID because my initial test was negative and I considered trying to muster up the energy for work. I thought I had the flu but after my sister discovered she was a close contact, we both decided to take RATs. I feel relieved in the sense that I didn’t leave the house so I didn’t have the opportunity to potentially spread it to the community but I am by no means happy about having COVID. It’s pretty horrible to have COVID and it’s not an enjoyable experience at all! At the same time, I am relieved I found out I had COVID instead of assuming I had the flu because of one negative RAT. It’s really important for individuals with symptoms to keep testing so they don’t spread COVID through the community.

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It’s strange because I feel like a different person outside of university. University is almost like an insulated bubble. I love studying and learning, however, I do strongly believe that learning can take place outside of the classroom. Although in many ways I am happier, I do also feel incomplete. I question if my friendships and relationships would’ve turned out better if I had actually not been stuck in this insulated bubble of academia. Although studying is a productive activity, so is working and volunteering. However, I associate studying with immaturity and a discovery phase, especially considering my undergraduate degree was really marked by those two key features.

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Recently I’ve been reflecting on what I genuinely want out of life. Sometimes I think altruistic pursuits conflict with an individuals own personal desires. At what point do we decide to put ourselves first?

Can we fulfil our own needs and desires whilst simultaneously being altruistic? This is to say it is a direct contradiction to the word altruistic.

Although I’m rambling, for the first time in ages I do feel like I know what I want and I feel okay with my choices. I feel finally free in saying this. No more doubts in what I want to do with myself. No more indecision. Just trying to enjoy life taking one step at a time to heal myself and move forward.

Life update: postgrad, work & new family member

Most of my friends know that I absolutely love studying. I’m hoping to graduate in July this year from my undergraduate arts degree. It’s honestly been the best yet most tumultuous period of my life. I feel like I’ve poured all my energy into this degree just to get the opportunity to do an honours degree to finally realise it may not be exactly what I want. Although I already have a research proposal in mind, I am not sure if pursing an honours degree is what I want. For years I’ve been writing my own journalistic pieces on another blog to express myself and my thoughts. I never even considered pursing a Masters of Journalism until recently. I’ve considered a postgraduate law degree (Juris doctor), for which I’ve already received a conditional offer. Throughout my degree, I’ve dipped into subjects which intersect with law and journalism so it’s certainly an area of interest. I’ve considered changing sectors completely, invested time and money into doing so, just to realise it’s also not what I want. To be consumed by indecision is exhausting.

I’ve been applying for jobs to give myself a feeling of security in case pursing further studies is something I don’t want, or, in the event I just want a break from studying. It’s been an interesting yet challenging process. I think a lot of what happens in university doesn’t necessarily help to prepare you for ‘adulting.’

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For the first time since the pandemic, I have started to feel kind of normal. I’ve been working out consistently and I’m now in my third week of this newfound motivation to go to the gym. I’ve been keeping a food journal to help keep myself accountable and engage in much more meaningful conversations with my dietician. I’ve been going to the gym 4 times a week, with the aims of increasing it to 5-6 days out of the week. Life seems to be getting in the way of this goal. I’ve been preparing for exams, whilst trying to adapt to having a new and much larger dog in the house. With all this change happening in my life, I do feel a little bit of sadness too. I genuinely feel like I’m waving goodbye to another version of myself. I’m trying to let go of all the trauma which has unfolded over the course of my time at university. Four and a half years which have encompassed times which were fun and full of excitement, as well as periods which were traumatic and also extremely sad or depressing. Most importantly, I finally can let go of this journey and move onto the next chapter.

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I’ve been having sessions with my therapist which have helped me to finally unravel the deep-rooted nature of childhood trauma and neglect. I’ve been so worried about turning out like my parents and have completely overlooked dissecting their behaviours in order to modify my own and address my own toxic traits. I feel heard and I’m thankful to be able to access therapy and to have a safe space to talk about my feelings.

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I can’t lie, sometimes I just want a hug. I can’t tell you what it is about this change and movement that makes me feel a little bit lonely. I suppose that’s what makes all of this so beautiful. For the first time I realise I’ve got to step into this alone. No one can decide for me, I’m an adult. This truly is my life and I have all the autonomy and agency that I’ve wished for. My decisions are solely my own to make. Whether I go back and do another degree or I don’t, it’s my life and my choice. I’ve asked for opinions from my friends and family but at the end of the day it doesn’t matter because the only opinion that matters is my own.

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On a final note, I would like to thank every single person who got me here. I want to thank those closest to me who nursed me back to good health when I was sick. I won’t forget the endless nights where they stayed up, brought me heat packs or Nesquik and milo. I will not forget how they helped me to walk or dress while I was in severe pain after tough and grueling surgeries. Thank you for showing me empathy and kindness when I needed it the most.

black snow

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When we open ourselves up to others, we inherently make ourselves vulnerable. We open ourselves up to the possible criticisms of others, the stigma surrounding our actions, or at times, blatant abuse. I don’t really talk personally to many friends about the intricacies of my everyday life as a result. I keep most things to myself. Accepting that my mind is not impenetrable to the criticisms of others is something I’m getting used to. I actively seek to protect my own mental health. I give away bread crumbs now. Not many of my close friends really read this blog, in fact I’m not really sure anyone does. It’s why sometimes I can be cryptic or allusive in the way I write.

I’m frustrated and lonely. I have never felt this alone in my life. I’m confused and scared. I want to be grateful for this life and in so many ways I am. I am lucky and I know it. Sometimes I feel this incompleteness within myself.

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Love is weird. Love is amazing and tragic. We hold on too tight and it can be suffocating. Sometimes we don’t care enough and then we neglect the person we love most. It’s a balancing act. I think there’s an element where I prefer to distance myself, it’s easier to let go if you never fully invested into someone to begin with. It’s harder to let go when you envision a future. It’s harder to let go when that future becomes tangible. The possibility of moving in, getting married or starting a family are all a lot harder to let go of when it all becomes tangible. No longer just hopes and dreams, but something that could come to fruition. I don’t think in actuality we ever let go of our trauma, we just learn to live with it. It’s like a shard of glass in the body, you don’t ever really get rid of it, you just learn to live with the pain.

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The world is changing and so is my body. It’s all so scary. Perhaps because the world really isn’t ‘getting better.’ The world has been experiencing a chronic cold for the past century. However, I don’t think the term ‘cold’ quite really conveys the gravity of what’s been happening. From the Holocaust, Korean War, Vietnam War, the Gulf War, Rwanda, 9/11, Iraq War, Syrian Civil War and now the Ukraine Invasion, as well as a whole bunch of natural disasters like hurricane Sandy, the Tonga Tsunami or flash flooding in Yemen, needless to say our world is a sh*t show. Nothing is normal. It’s like the world keeps fracturing itself, maybe even purposefully. There have been no attempts to heal the wounds of the past.

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H2O

Sometimes I really dislike arts degrees. There are a multitude of answers when writing an essay. When I was studying biomedical science, fixated on pursing chemistry in some shape, I loved the fact that there were in fact correct answers. There was a clear demarcation between what was right and what was wrong.

Perhaps living life is much like an arts essay, there really is no ‘right’ or ‘wrong’ answer as to how we should live our lives. I suppose the basic qualities of being an honest person with integrity is a great start though.

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I look outside my window and I’m surrounded by mountains. Mountains covered in snow.

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I truly started contemplating the option of not having kids when I began to think about the reasons why I wanted them to begin with. It all boiled down to one thought, I just wanted to be loved and needed unconditionally. There’s nobody more needy than a newborn baby. There was another selfish reason, although it was a less prominent motivation. I also wanted to feel something. To not feel cold. And maybe I am just that, a cold and disconnected person. It’s really quite funny how inescapable it is. We all end up like our parents in the end, no matter how hard we resist. No matter the years of therapy.

There is one thing I’ll never forget about being pregnant and perhaps it was the only thing I enjoyed about it. I can tell you exactly what it feels like to hear your baby’s heartbeat. It feels like you’re being revived.

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It’s been awhile since I felt undesirable. In the wake of another breakup, I feel much more insecure about myself and my appearance. I’ve never really cared too much about my appearance. I loved swimming because it washed away all my anxieties. It drastically helped my cardiovascular health and endurance, which simultaneously kept me in shape. I began experimenting with makeup in my mid-teens and I loved the way it transformed my appearance. I still do. In saying this, over the past few years I haven’t cared about my appearance for awhile in terms of always wearing makeup 24/7. I’ve focused on a decent skincare routine but otherwise, it’s been on my mind sparingly. I think we all get a little too comfortable in relationships. May be to the point where we stop caring about our appearance.

I think there is a bit of a double standard though. I feel like women in society are pressured to look glamorous, fit and beautiful. Skincare and beauty industries are targeted towards enticing women to become consumers so they can become that glamorous, fit and beautiful woman that is Instagram famous worthy as deemed by societal expectations. I can’t lie, big corporate capitalists have gotten me hooked!

Let’s be honest, men don’t have the same expectations as women. Their potential only monthly expenditure is a gym membership to conform to societal expectations. For women, it’s a gym membership and all the other multitude of makeup tools and products which are deducted out of their bank accounts so they can maintain their appearance in order to be classified as beautiful. I think it’s quite sad that women are reduced to this as I personally disagree with societal expectations which pressure women to become consumers so they conform and become the ideal women as considered by the male gaze.

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I’ve also decided to go back to therapy whenever I need it. Even if it potentially impacts my savings goals. I love the fact that I have been consistently going to therapy, however I’ve realised I’m not implementing changes I’ve discussed in those sessions. I’ve realised that I need a methodical approach to my sessions, outlining exactly what topic each particular session will be focused around and how to create and implement behavioural changes so I can see positive outcomes.

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I have urges often to just say how I feel but in reality, no one cares for it. There’s an element of self-censorship and self-control required which is a task in itself. Just because we say we love someone, doesn’t mean that love will be reciprocated. Worse still, the level of commitment may not be reciprocated. Love isn’t enough, but surely effort is? I suppose the failure of my relationship is a good supporting case study to debunk this.

Although my year has started off rocky, I do think I can create something positive out of what’s happened. I mean, clearly I’ve still got a long way to go and this journey isn’t over. I’ve just got to accept that feeling down is okay. I’ve got to accept that I’ll probably feel a little uncomfortable for awhile. We all feel comfortable with something that’s familiar. I’ve just got to be okay with everything that’s unfamiliar.

Lessons learnt from being hospitalised during the COVID-19 pandemic

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After falling sick in August, during the COVID-19 pandemic in Melbourne, Victoria, one of Australia’s worst performing states in regards to COVID cases, I was hospitalised.

With fevers, chills, muscle aches to the point where I couldn’t sit up without being in excruciating pain, needless to say it was the most emotionally draining time of my life. During this period, I had a total of 7 COVID-19 swabs, all of which came back negative. Despite having at the time, 2 negative COVID-19 swabs, hospital doctors decided to put me in a COVID-19 ward, obviously where COVID positive patients were residing.

At this time, restrictions were tough and no family members or friends could visit patients. Although the view was amazing in the COVID-19 ward and I am genuinely thankful to all the doctors who helped me, I still have dreadful anxiety.

From August to September, I spent a total of around 20 days in hospital, watching too much daytime TV like Charmed and getting excited for FRIENDS episodes at around 6-7pm. After having multiple tests like an ultrasound on my legs, MRI for my brain, spine and legs, a PET Scan, CT scan and getting poked multiple times a day for blood. Additionally having a bone marrow biopsy, skin biopsy and lastly a muscle biopsy, needless to say the whole experience was exhausting emotionally for both myself, my family and loved ones.

I was forced to defer from my degree in order to manage my health issues and I lost 6kgs, to eventually gain back more weight due to depression and anxiety about a potential autoimmune disease diagnosis. What’s the worst part of it? There was no clear answer. I live with the anxiety that it could happen again and have to learn to embrace life and all of it’s uncertainties.

My anxiety spikes when I go out and see people without masks on, this overwhelming fear washes over me and I’m consumed by it. Fear that I will end up in there again, alone. Although I do not consider myself fully recovered and still have to deal with the colossal mess which is my life, it taught me a great deal about life.

Getting out of depression is like rock-climbing without all the safety equipment. You’ll most likely fall multiple times back into that empty chasm. You just have to keep trying. To all my fellow book-lovers out there, as Susan Jeffers would say, ‘Feel The Fear and Do It Anyway’.