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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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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Therapy Session 3 – 04/03/22

So I talked with my therapist about a lot of different issues which have popped up over the past few months. Here’s some of my notes taken from the session..

Boundaries: I seem to continually violate others boundaries whilst also not putting any in place for myself. My therapist mentioned how it’s often easier to pick out others problems and as a result of my own expectations, I form my own judgements which surface. In relation to a really specific incident, I crossed a few boundaries when someone had opened up to me, causing me to lash out as a result of my own judgements and being unable to ‘catch’ myself. My therapist had mentioned how I’ve got to work on catching myself and being mindful. In order to do this, I’ve got to have space in order to center myself in moments like this.

Red Flags: My therapist recommended that I write down a list of red flags. I’m supposed to ask myself what pulls me to an individual and what deters me from them. With space and time, I should be allowed to process if our values are aligned. I was recommended to ask myself if what I’m asking for is being provided. She suggested that if I’m basing it from a friendship foundation, I should create a list of my values and tick it off if they’re being met. On a friendship level, if the person is being transparent, non-dismissive, respectful and recognizing me for who I am, then despite all the other differences, if those basic values are met then a ‘bond can form stronger over time’ since we are able to work through those differences. We talked briefly about things like chemistry, familiarity, comfort and love languages which was something different.

Dating: My therapist recommended that I give myself at least 3 months before I start dating again. This is because I’ve got to give myself time to process through my feelings of anger and so I can experience the grieving process of ending a relationship. She said there’s a cycle where you get depressed, angry, you start self-doubting and I’ve got to allow myself to process through those emotions and allow them to surface. During this period, I am supposed to allow these emotions to surface, name them and make peace with them. We also talked briefly about how this is a period of post-traumatic growth which was a term I’ve never heard before!

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This is just a brief summarised overview of everything we discussed. I found it pretty valuable. Although I haven’t really written out my red flags checklist, I do think I will eventually be able to get to it. It’s been a pretty rough time and honestly I didn’t realise how much work I had to do and how much I was suppressing.

There’s a lot more I’ve been wanting to talk about with my therapist, mainly being that I am a poor listener. I genuinely believe my inability to truly listen to those around me negatively impacts my friendship and relationships. Although I do think I’ve improved with my overall communication and tried to listen more to others and their issues, I do still think it’s fundamentally an issue. In fact, may be to the point where I sometimes myself can’t put in proper boundaries and become a primary support mechanism for someone else to rant to. The weird nature of this is truly perplexing.

I’m not exactly sure if I want to date again. It’s been something that’s on my mind but I feel so discouraged after my last relationship. I think being in therapy and feeling invalidated about my progress in my past relationship negatively impacted my own self-perception about my development and progress in therapy. I really thought I was doing well and attempting to address all criticisms that I received but perhaps that in itself was insufficient. Feeling inadequate makes me feel pretty sh#t about myself. No matter how many books I read or how many therapy sessions I go to, I suppose I will never be the perfect or ideal partner.

One other massive issue I wanted to tackle with my therapist is my often crippling anxiety. Crippling to the point where I avoid going out and enjoying myself because of my fears around COVID or getting sick again. I guess no one really knows what my hospital experience was like other than myself. I can still remember the excruciating back pain which made it near impossible for me to sit up or walk. I am really thankful for my health even though I do experience chronic pain. I am so thankful that I can walk. Perhaps one thing I need to add to my green flag checklist is needing someone who isn’t flaky. I do need stability. I need stability and faith in someone when I’m sick and scared sh#tless or hope that they will be with me even when things aren’t going great in my own life. I feel like the entire purpose of a relationship is to work towards eventually getting married. Marriage is the ultimate form of commitment, especially because it is legally binding..

I have learnt a lot from this experience though and it’s YOLO. You only live one. Say what you need to say, do what you need to do because this really is the one life that we get. I feel a little more ease in the future choices I want to make, especially with my future studies. I’ve come to realise that I do genuinely want to help people and the only way I can do that is by potentially switching fields in order to maximise my skill set. I suppose I will have to revisit this thought at a more appropriate time.

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It’s been quite rainy these past few days. I really love it. I miss going on long drives at night in the rain. In many ways it was a different kind of therapy.

Moving on is difficult. I no longer play the songs that remind me of anything painful from the past and I believe this effort has paid off to some degree. I haven’t played Bennie and the Jets for years. I loved that song. I think now I can play it and finally embrace it for what it is, instead of having the painful reminder and memory along with it. Some wounds are more recent than others and I know it’ll take time for them to properly heal. All things do get better with time and may be I will too.

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I remember when I was 19 in The Netherlands. I was on a train from Leiden to Rotterdam. Surprisingly, the public transport system there is amazing. I remember the beautiful greenery on that trip.

Now I’m alone, there’s nothing left just endless thoughts and memories, some which will finally be put to rest.

Social Media Break: From an Anti-socialite

I love this photo. It speaks volumes about how even with COVID-19 restrictions lifted, we (society) cannot find ways to get off our electronics or social media. After my health issues this year, I slowly started realising more and more about myself and how all of my passions that used to define me, eventually slowly started my mental health decline.

My passion and love for politics, my love for my university studies and my desire to change the world rapidly changed over the past few months. After studying The Holocaust for an entire semester, my outlook on life was bleak. I genuinely believe in all my heart now that even if a newer generation of young politicians find themselves in government, radical, systemic change is unlikely to occur.

Political, religious, ethnic, sex or class divides are too deeply entrenched into global societies. There will never be peace in Israel-Palestine or in Myanmar. Religious values encroaching upon governments can, will and have restricted women’s rights to easily access contraceptives or abortions (although this is not true for all countries).

I once defined myself by learning about global issues in an attempt to change them, to create a more unified global community. The realisation that I alone cannot do it hit me like a basketball to the face. Maybe it was my youth and naivete that drove me to such conclusions, either way, I don’t regret it. Although I realise now I’d much rather clean up the mess of politicians then to be one myself, it opened my eyes up to the hardships others experience and how I am lucky in the coin toss of the birth lottery.

I used to yearn to understand the lived experiences of others, others in Third World countries, those living under oppressive regimes or people who have experienced war or famine. I now understand that I will never be able to comprehend others, their heartbreak, loss or grief unless I myself am put into these extreme circumstances. How could I ever understand what it is like to slowly lose my child to famine or cholera? Simply reading about it is inadequate.

I have a deep appreciation for my degree. Although it is not complete yet, it has truly given my life so much more meaning. Knowledge is power. I will never take for granted all that I have learnt.

What I realised however, was that all the media do is post negative stories. Everyday, everywhere, my feeds on Instagram, Twitter or Facebook were full of only the bad events occurring. There were minimal signs or posts of positivity, eventually the thought of waking up made me feel dreadful. I do believe purging myself from social media has helped immensely with this.

Although I do not pretend there aren’t real issues in the world, I do believe taking a step back has helped me to take greater care with my mental health. Breaking out of bad habits which negatively impact my life will help. It already has.

Life is too precious and fragile to keep expecting change without working for it. As cliche as it sounds, my new goal is to live in the moment and embrace each day as it comes by.

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’.