#TheChronicallyIllChronicles

[fucking-feelings-man]

Grief, Acceptance, and Pain

TW/CW: talks of suicide, MAiD, grief, loss, hopelessness. It is a heavy post, so please protect your mental/physical health and read with caution (or don’t read – I want you to be safe).

I have spent the last few months trying to come to terms with the fact that I am not going to get better. Trying to figure out what acceptance is and means. What it is like to engage with acceptance and grief when you have spent your whole life running from it and thinking that it is “giving up” or “giving in”. When you become so sick that your entire life is put on pause, there is nowhere left to run. You have to deal with every thought, feeling, and emotion that you have been suppressing for the last decade.

I am not going to sit here and pretend that I have figured things out. I am still very much in the depths of pain and suffering. I am just trying to keep myself alive moment to moment, day by day, in the hopes that I make it to the other side alive. But I thought that sharing some of my struggles may be a good avenue to get it out of my brain and into the hands of someone else. Someone who may resonate with my words and thoughts. Someone who might have answers or lived experience that can guide me. What’s that quote? A problem shared is a problem halved.

Every day I wake up and I am immediately consumed with grief. We talk frequently about the grief of losing someone you love. The grief of losing a beloved pet. Even the grief of losing a job. What about when you lose a part of yourself? When you lose your entire identity? What do you do then? How do you cope when all of the support systems in place for grieving are to help you deal with external events and not inner turmoil?

I have been trying to move through the monotony of my new life by holding onto the former me. The Mae who loved to perform. The Mae who had a brain that could soak up anything and everything set in front of them. The Mae who could see the little joys in life and run with them. The Mae who spent every tiny bit of their savings travelling the world and investing in their passions. The Mae who didn’t stop to think about the “what ifs”. The Mae who was so busy that they had no choice but to be in the moment and roll with things.

I look back at that person and I am angry, frustrated, and in immense pain. I would quite literally give anything for the chance to taste that kind of carefree-ness and passion. Unfortunately, I am not that person anymore. It is so hard to reconcile that that is, in some ways, the same person who is writing this very post. The same flesh-vessel. The same brain. The same hopes and dreams, but now in a body that doesn’t metabolize energy in the same way. The same hunger for life but now stuck in bed for 21 hours of the day. The same drive but now a brain that can’t process information at the same speed.

I don’t know how to accept this new reality. I get mad at myself because I also know that things could be worse. Those with the same condition as me can’t even expend the energy to type a post like this. Can’t make it out of their bed, even with assistance. I have to sit with that and know that theoretically things could get worse than this. And then I get even more angry with myself that I am so upset that my life is the way it is. I think that I should be grateful that I can still go to the bathroom unassisted. That I can write a post like this and occasionally have enough energy to listen to the music that I love and move my body.

Every new realization of my failing health and of the health that I still have left consumes me with grief. I grieve for myself but I also grieve for the countless members of my community who don’t have the same support network or same access to community. Those of us who are choosing Medical Assistance in Dying (MAiD) because it is easier than living in the midst of a failing health system and a world that cares more about capital than it does about the vulnerable. Those of us who are choosing MAiD because it is cheaper to die than it is to stay alive and spend every waking moment fighting insurance companies and government “support”. I am consumed by grief.

And I completely understand why people can’t continue on. I understand what it is like to be on that edge, inching towards a death date because then at least you have a time-frame to work with and you can spend what little energy you have left returning to the things you once loved. I respect every single persons decision to go through with MAiD. I have thought about it many times. I have been the person reading up on MAiD and realizing how much energy that I could save from the process. But MAiD isn’t my first experience with this.

I have thought about death on and off since I was a teenager. It is something I don’t talk about as often as I talk about my physical health. I don’t know if it is because it is more vulnerable for me than my physical body. At least you can see a feeding tube and a wheelchair. You can’t see OCD or anxiety or depression (well you can if you look hard enough). I have experienced passive suicidal thoughts as far back as I can remember. But I never talked about it until I became physically ill. I think that’s partly because I was able to compartmentalize and move in a forward motion, even when I was doing horribly with my mental health, because I could keep my physical body moving. But as soon as I became ill and had to slow down and stop almost everything in my life, I couldn’t run from those thoughts anymore.

I spent so much of my early days of being chronically ill and disabled fighting against doctors. Fighting against my mental health history to try to get people to listen. Parts of myself were being weaponized against me and so the only way out was to downplay and separate myself from my mental illnesses. Convince the doctors that I was stable and coping. Convince them that something else was going on because I knew something else was happening. It wasn’t anxiety or depression or OCD like the doctors tried to convince me. I had lived with these illnesses for close to a decade before I started having physical symptoms. I knew in my gut that something was wrong, but part of me also thought that maybe I had snapped. Maybe I was so mentally unwell that I was making it all up. That’s what happens when an entire field gaslights femme presenting people. We start to believe that maybe we are “crazy”.

But I kept fighting. Something in me knew that what was happening wasn’t right. Some part of me held onto the hope that I would find out the cause for my physical symptoms. And I am grateful to that part of me. The part that compartmentalizes so well and can separate the emotional from the physical. The part of me that will protect my body at all costs. But I am also mad at that part of me. I am mad because I am almost two years post diagnosis and I am still working through the thoughts, feelings, and emotions I suppressed within the first few years of becoming sick. I had to fight so hard that I never got to process what was actually happening to me. I never got to be sick and spend time recuperating and recovering. I never got to breathe. I never got to rest. I never got to be.

And I think that is where all of this grief is suddenly coming from. It’s like the floodgates have opened and there is no way to stop it. It’s like my body/mind is just starting to realize every horrible thing that I witnessed and experienced over the past five years. And it isn’t stopping there. Due to me being an expert compartmentalizer, I have a lot of things stored away. And now everything from my life is starting to come to the surface. Every bad memory is coming flooding back because I am too sick to keep up the effort to keep things stored away in neat boxes. I just don’t have the energy to not think about things. How do you stop thinking about things when the only thing you have energy for now is to lay in bed, in the dark, and think. That suppression tactic no longer works.

And so I am left with grief, and rage, and overwhelming sadness. I am left to mourn and reflect on past me. Because I have nothing but time now. The time I used to fill with school and work and readings and adventures. The time I used to choreograph and dance and act and sing. The time I used to daydream and hope. It is all now time that I am left to deal with the trauma and terrifying events of the last few years. I attempt to distract myself with TV shows and music, but even that expends too much energy for my body now. My old coping mechanisms don’t work so now I have to figure out how to accept what is happening.

Acceptance. I am not new to acceptance. I have been doing CBT and ACT for years now. But I have never been able to master acceptance. I chuckle about it now because if I had spent the time and energy into doing my therapy homework years ago, I may have been better equipped to handle the shitstorm of emotions my body and mind are throwing at me now. Acceptance has just been something that hasn’t clicked for me. My brain conflates “acceptance” with “giving up” and “settling” for something you don’t want. And, before anybody comes for me, I intellectually know that that is NOT what acceptance is. I guess I am just going to have to slowly figure out what acceptance means to me.

It is hard though to accept things when you are still in the depths of the grieving process. I know I probably will never stop grieving the life I could’ve had because that is the nature of losing a part of yourself and not something or someone external. It will be a constant grieving process with ebbs and flows. Some days it will be easier to carry this grief and some days it will be all consuming. I am trying to give myself grace and kindness. I am trying to treat myself how I would treat my friends who are also going through a grieving process and are on their own acceptance journey with their health and chronic conditions.

All of this is easier said than done. When that grief becomes all consuming it is hard to remind yourself of better days and that there is a way out of this. It is even more difficult when you already deal with mental health issues that compound and add to the stress. I am just trying to survive right now and that has to be enough. I can try to return to hopes and dreams in the future if I ever get better or even if I get a mild decrease in symptoms, but for right now I have to accept that my body needs time. I have to accept that where I am at is limited and that I have to focus my energy on basic activities of daily living. I only have the energy to wake up, eat, and sleep right now and I have to accept that.

It is so damn hard. But I can’t change things right now. I have to learn to be ok with taking things slowly and resting. It is such a stark contrast to my past life that I know it will be difficult not to make comparisons. And I have to be kind to myself in those moments of the grieving process. I am also learning that it is more than ok to lean on those around you and reach out for additional support. This is especially difficult when you have a chronic condition. People have compassion fatigue and many can’t comprehend a life of constant near-hospitalization-level sickness. We are used to people getting sick and recovering or getting sick and dying, but very rarely are we faced with someone who gets sick and stays extremely sick (I say rarely here, but it is more common now than we realize). So, I ask that if you have the capacity that you reach out to someone in your life dealing with chronic conditions.

I hope that some of what I have shared above will educate. I hope (and don’t hope) that some of what I have said will resonate with others. I hope that if you resonated with what I have written, that you will feel slightly less alone. There are too many of us going through this constant state of grieving but we are scared to voice our thoughts. We are scared that it will be too much for those around us. Too much for anyone to handle. So we keep it inside and it grows and gets harder to carry. If I have learned one thing from therapy, it is that by voicing thoughts and sharing our fears with other people – it can become slightly easier to manage. My brain isn’t a very safe place right now, but I am trying to connect in the hopes that I can manage better and make it through one day at a time.

#TheChronicallyIllChronicles

[fucking-feelings-man]

Mental Health and Physical Illness

It’s the beginning of Suicide Prevention Awareness Month. It has hit me particularly hard this year. I am very open about my physical health and tend to be a lot more closed off about my mental health. I am slowly trying to change that as I work on accepting that my mental illness are also a part of my health journey. I think we still have a long way to go on education around mental illnesses. Hopefully, in the future, it will be easier for people to open up about their struggles with their mental health. 

There is a reason why I don’t share my mental health struggles. It is so easy for it to be weaponized against you. My mental illnesses have been used against me in my long journey to find my physical health diagnoses. And it prevented me from getting certain treatment options due to the stigma and poor educational training on mental illnesses in medicine. TW/CW, below, for talk of suicidal ideation, suicide, intrusive thoughts, anxiety attacks, etc. I am taking this as an opportunity to speak a bit more openly about my mental illnesses. Please, look after your own mental health right now. If this post is too much for you to engage with, that is ok.

I have dealt with suicidal ideation since I was 14. I initially received a diagnosis of OCD and 3 anxiety disorders. At the beginning, my suicidal ideation started due to untreated OCD and not knowing why I was having horrific intrusive thoughts. My compulsions were taking up most of my waking hours and I was emotionally, physically, and mentally exhausted. I wasn’t able to enter a classroom for 2 years. I was the weird mentally ill kid with a desk in the hallway. I would have panic attacks if I even set foot in a classroom. I thought that if someone looked at me during class, my loved ones would die. Or if someone heard my tummy rumble, it would be the end of the world. This lead to extreme anxiety responses and thinking ending my life was the only way to escape this torment. 

I started therapy after a particularly bad incident in high school that left me unable to even enter the school property for weeks. This was my first bout of active suicidal ideation. I was extremely lucky and found a psychologist that I clicked with and worked my but off for 2 years on ERP & CBT. By my graduating year I was back in the classroom (but always had to be seated by the door or on the end of a row). I was known by almost all of the teachers because I was allowed to exit during classes to go hang out in the hallway to do my work. But, I like to think by the end of it I had a better understanding of myself and my tolerance for in-class work got a heck of a lot better. 

That carried into university and I remember having to tell most of my professors that I needed a reserved seat on the end of a row, and/or a seat right near the exit. I remember having horrific panic attacks if I walked into class and my usual seat was taken. Those were usually the only times I missed lectures. I still can’t quite shake that and it’s ok because it’s a heck of a lot better than it used to be. However, the exam/test anxiety never really vanished so I would dress obnoxiously nice. If I looked put-together on the outside, it kind of tricked my brain into being semi put-together on the inside. That, or I was able to take exams in another location, which was 10x’s easier. 

I was doing pretty ok. My suicidal ideation was only reserved for those fleeting intrusive thoughts. I had gotten used to living with OCD at this point. My general anxiety levels were decent and I was coping pretty well. I was thriving in school and working so many odd jobs, looking back I can’t believe how I was doing it all. I was functioning at a level I never had before. I felt optimistic for the first time in my life.

Then the physical illnesses took over and my world started to shrink. The levels of chronic pain I was dealing with were unacceptable. The nausea/vomiting was debilitating. The fear of passing out every time I stood up consumed every waking moment. And it was all brushed off as anxiety. I was just stressed out. If I did some meditation it would be ok. 

Now, for someone that had been dealing with mental illnesses for 6 years at this point, I was so confused. I knew my anxiety triggers. I came to learn to live with my intrusive thoughts. The hours I spent on compulsions dwindled. And then to be told by health professionals these physical symptoms were just anxiety? I was left lost. How could my mind be doing these things to my body? I thought I knew what my brain was capable of. 

So, I tried to keep pushing. I dragged myself out of bed to make it to classes at the end of my undergrad and beginning of grad school. I tried to “mind over matter” the fuck out of everything. But I kept getting sicker and sicker. I started reaching out to my psychologist again because I felt so confused and defeated. I was then diagnosed with depression but my psychologist made sure to reiterate that this depression was secondary to a physical health condition. I was depressed because I was in pain and not receiving help. My anxiety was increasing because I was in pain and nobody was listening to me. 

Doctors continued to brush my symptoms off as anxiety because my mental health history was long. This left me angry and sad and I felt like giving up. This is when the suicidal ideation kicked back in. And it was severe this time. I went into my first case of active suicidal ideation in 6 years and I had to work really hard on returning to my safety plan and finding distractions. But, my body was so sick that most distractions took too much out of me. I was left in a sick and dying body and my brain latched onto that and figured it would be easier to end the suffering all together. 

I quite honestly don’t know how I made it through 2019/2020. I think it was guilt and spite that kept me going in my darkest moments. And the fact I had an amazing psychologist and a kick ass mum. And I still had forced connections through school to remind me that I wasn’t alone and that people cared about me. But, I kept returning to the thought of “is my brain so sick that it’s causing me to slowly starve to death and allowing my nervous system to shut down?”. Something just didn’t feel right about that and so with my psychologists help we pushed back. 

I had countless letters written detailing that if medical doctors continued to use my mental health history against me and didn’t follow through on more testing, my death would be on their hands. It quite literally was stated that way. I was at severe risk for suicide and my psychologist didn’t hold back. It was at this point that MAiD was introduced as a possibility for me. I didn’t know what to do with that information so for a brief time period I started looking into MAiD as a serious option. If I couldn’t find a diagnosis, I was set on making the decision to pursue MAiD. 

I held on for another year and that’s when I found the miracle doctor team who figured out why I was sick and gave me my diagnoses. The relief I felt was impossible to describe. I then spent the last year fighting as hard as I could to get the rest of my diagnoses and start the process of finding treatments and symptom management. I had come out on the other side and now have tools in place to treat some of my symptoms. 

However, in the past month, the realization that most of my conditions don’t have cures and don’t have treatments has hit me very hard. I am exhausted. I don’t want to fight anymore. Those dark moments came rushing back and I have spent the last few weeks returning to my safety plan. I have had to have almost round-the-clock supervision. I want to share this as having an incurable disease that rips every shred of your identity away from you is fucking terrifying. The only thing that has kept me going has been fleeting interactions with people. I haven’t been able to properly leave bed in 2 weeks. I have made it outside 3 times to see people and one of those times was to get sedatives to try and control the panic attacks that have riddled most of my days. 

Why am I sharing this? I guess the weight of suicide prevention awareness month really hit me as I realized it was September. I realized 2 more months have slipped away from me as I am in a haze of recovery from my hospital stay. I had to make some really hard decisions recently for my health that have hit me hard mentally. And when I get into these crash cycles where more things are ripped away, that’s when my suicidal ideation becomes active again. And it’s so exhausting to have to fight physically and mentally to survive. 

I also share because I am always told I seem so happy all of the time and have that bubbly energy. So, I am not the face of what you would assume to be someone at high risk of suicide. I always say that I try to make the most out of every situation I have because most of the time I feel like it could be one of the last. And now that I am physically sick, those fleeting moments mean even more to me. I want people to feel a little safer in sharing their stories and reaching out for help. 

I still am not able to directly reach out to people for help. I make vague posts because the thought of putting all of this onto someone else makes me feel even worse. I am lucky to have a support system and people who understand complex mental and physical illnesses. But, we have such a long way to go in ensuring people with mental illnesses are treated fairly in our health system and in our communities. Suicide sometimes feels like the only logical option to deal with the level of suffering we experience. And that is fucking grim because we shouldn’t feel like burdens or like we are drowning. We should have adequate access to resources and practical help. All the therapy in the world isn’t going to do much for me until we find treatments for some of my conditions. 

I have reached the end of the mental health resource line. I am still brainstorming with my psychologist but it’s terrifying that I have already exhausted every avenue that psychology can offer me. And I have had horrific side effects from medication due to my comorbid physical health conditions. I am running out of options to keep myself alive. The only things I have left to hold onto are guilt and spite and that is a terrifying place to be. 

I just hope that in my lifetime we are able to make things better for the next generation of people with post-infectious illnesses and mental illnesses. It’s not ok that people like me are left to die or are pushed towards MAiD. I always say that my life would be a lot easier if our healthcare system was in better shape and if our social systems were revamped so I never had to worry about how I’m going to afford my next round of experimental medications or have to fight with insurance to get mobility devices that will improve my quality of life. It shouldn’t be easier for me to access and be approved for MAiD than access resources and treatments to keep me alive. 

All of this to stay, check in on that friend that always seems really happy and put together. Check in on that person who has mental illnesses but you haven’t heard from in a while. Check in on your sick and disabled friends because I promise you we are not ok. It’s hard to exist in a world that constantly tells you it would be so much easier if you were just dead. And I am fighting so hard to just hold on an extra day. I keep reminding myself that no matter how horrible the day has been, it always ends the same. I get to go to bed. I get to let sleep take over, even if it’s only for a few minutes at a time. I get to experience a tiny reprieve from the hell it is to exist in this world as a mentally ill and physically ill person. And I am so grateful to be able to crawl back into my bed when things get tough. Because chances are, this won’t last forever. 

So, what can you do to prevent suicide? Support workers rights in your local community. Support local mental health networks and collectives that are doing the work to make mental health supports accessible. Support the push to keep our healthcare system public. Support local shelters. Support organizations that are fighting for universal basic income and a living wage. Support mutual aid projects. Support local disability coalitions. And speak up about the failings of our government and hold politicians accountable. Reach out to someone you haven’t heard from in a while. Talk about suicide. Learn a bit more about suicide and mental illnesses. And always check-in on that person that seems to be holding it together. We shouldn’t have to be resilient. We shouldn’t have to be strong.

#TheChronicallyIllChronicles

[fucking-feelings-man]

Hospital Stay and Feeding Tube Update

Well, hello there! I feel as if so much has happened over the last few months. It is kind of surreal to be on the other side of things. I am now trying my best to adjust to my new normal. I wanted to give everyone an update on all that has happened since May. This is the easiest platform to do that as I can update everyone all at once.

As many of you know, last Fall I was diagnosed with Superior Mesenteric Artery Syndrome (SMAS) and Nutcracker Syndrome (NCS). I have been struggling with severe digestive issues since I was 14, but had always managed it with medications and close monitoring. That was until I got much more ill in 2018 with worsening digestive symptoms and I was eventually diagnosed with severe irritable bowel syndrome (IBS) and an unspecified functional gastrointestinal dysmotility disorder in 2019. Then I got a combo bacterial and viral illness in the summer of 2019 and things went downhill quickly. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in early 2021 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in early 2022.

What happened in May? Why was I hospitalized again? Well, I was doing ok after my last hospital admission in Sept-Oct 2021. I was eating enough to maintain a little bit of weight after I successfully weaned off of TPN. So, we started to change some of my medications as they were interacting and causing some unpleasant nighttime hallucinations and cardiac issues. However, my digestive tract was not happy and I went into the worst GI flare-up I have ever had. After weaning off of some of the medications, I rapidly lost a significant amount of weight and my SMAS came back with a vengeance. This manifested as severe vomiting and horrendous pain. Now, I have dealt with vomiting for the last 5 years and I thought I was used to it. This was nothing like I had ever experienced before, so to the ER for Mae. This was after a full week of me not managing to keep any food or liquids down and none of my emergency nausea meds working.

By the time I got to the ER I was in bad shape and they admitted me immediately. However, not without a few blips. I was originally admitted to an active Covid outbreak unit, so I panicked and signed myself AMA – “Against Medical Advice”. That was honestly the scariest thing I have gone through. I returned home and proceeded to have the worst night of my life. I barely remember any of it. I remember a call with my psychologist, an ambulance ride, and arriving back in the ER. I was then sedated as the vomiting was severe and causing me to go into a panic, which would then make the vomiting worse. I was sent to a different hospital and admitted immediately again. This time on the oncology unit so as to ensure Covid safety for me as I am high risk. I am thankful for the doctors and nurses who made that hospital switch possible and took my Covid protections seriously.

Now, I am in hospital and confused as to what was to be done with me. I didn’t want to be put on TPN again as I had a horrible reaction to my PICC line and I didn’t know how they were going to treat the SMAS. I found out within the first few days that they were not going to let me leave until I had my nutrition stabilized again, which I was relieved to hear. Last time they sent me home prematurely because they didn’t have a special type of feeding tube in stock. So, I found out that during this admission they did have the feeding tube in stock and that they were finally going to trial it. Cue me waiting over a week for Interventional Radiology to find me a spot for the placement of the nasojejunal (NJ) tube.

During the first week of my hospital stay I was kept on fluids. Lactated ringers, potassium infusions, saline, and an attempt at PPN. You can imagine my veins were not very happy. I also received my first iron infusion which went swimmingly and I felt amazing. Eventually I was able to get my NJ tube placed and I tolerated it well. I thought that this is where it would end and I would be allowed to go home with my NJ tube to trial and see how I tolerated it. Instead they kept me in hospital for two more weeks to see how I tolerated it under medical supervision. Then I got the news that they would be placing a surgical tube so I would have a more permanent solution to my nutrition problems.

I was quickly booked in for surgery and I had an initial PEG tube placed. The recovery for that was brutal. I have never been in that amount of pain. I guess cutting a whole through your abdominal wall and placing a tube there isn’t what your body wants. Who would’ve thunk, lol. After a week of letting that heal, I was then taken down to have the jejunal extensions placed so I could start feeds again. Once it was all said and done, I had a beautiful PEG-J successfully placed with no major complications. It was the best outcome after so many things going wrong over the past few years. Once I was tolerating feeds again, I was allowed to go home. That ended my 5 week hospital admission.

I have now been home for over a month and the adjustment to my new life has been difficult. Due to my ME/CFS, the recovery has been extremely difficult. It sent me into a 4 week long crash and I am only just now starting to come out of the fog and return to somewhat of a baseline. I am so thankful for this tube, but the additional tasks it has added to my plate means that other things in my life have had to give. The time it takes to set up my feeds and clean my tube site is something I’m still trying to get used to. However, it has been amazing to see the colour slowly return to my face and to see some of my gastrointestinal symptoms dull a little bit. It’s amazing what stable nutrition can do.

I had a follow-up with my gastroenterologist and feeding tube nurse last week after some worsening site pain and radiating back pain. I basically couldn’t sit upright for more than a few minutes at a time for close to two weeks. They believe my GI tract is just having a bit of a temper tantrum and my abdominal muscles are still trying to regrow around the tube. So, I will be introducing some new medications over the next few weeks and if it doesn’t calm down then another scope and ultrasound are on the table. Fingers crossed my body will cooperate and I can avoid another scope. 10/10 would not recommend.

Now I am hoping that I will slowly have more energy from my feeds and will be able to start getting back to the things I love. I have to be really careful though because of all my comorbidities which make recovery much more challenging. I am just so beyond ready to be able to leave the house by myself and maybe do a couple fun things every month just to escape. You really don’t appreciate the outside world until you suddenly can’t safely access it. In combination with my feeding tube and mobility aids, I am hopeful I will be able to develop a new kind of relationship with the outside world.

I am sending so much love to people who are going through similar situations and who are trying to adapt to life 2.0. It can be really scary. I know it has been tremendously hard for me to get used to a medical device hanging out of my body. It is life giving and life sustaining, but that doesn’t mean it is easy to accept or adapt to. It is terrifying at times to know my infection risk has increased and that I have to factor in my tube to every decision that I now make. I thought for a long time that I might just be able to will my body into being able to eat and that I could avoid a permanent tube, but bodies and health don’t work that way. And now that I have made that jump I am so thankful I was brave enough to go ahead with it. I have already noticed so many positive changes in my day-to-day life.

Here’s to medical devices and modern medicine. It is astounding that we can give people a chance at life. I don’t know where I would be right now if I didn’t go through with the procedure and get this tube placed. I already appreciate it so much. I will now be properly nourished and that is worth everything. Here’s to life 2.0 and making progress! Xx

#TheChronicallyIllChronicles

[fucking-feelings-man]

An update on diagnoses and my hospital stay.

It has been a while since my last blog post. So much has happened since July and it has taken me a while to process everything. I finally received a diagnosis for my severe abdominal pain, nausea, inability to eat, and for the flank pain/blood in my urine. I was diagnosed with Superior Mesenteric Artery Syndrome and Nutcracker Syndrome.

Before I get into my new diagnoses and my lengthy hospital stay, I want to take a step back and look at what the months of August and September were like for me. I am providing a content warning here for talks of suicide and medical trauma. Those two months were extremely difficult for me and I need a space to get out some of the difficult thoughts. If this will be triggering for you, I invite you to skip the next two paragraphs where I will pick back up at the diagnoses and hospital stay. Also, feel free to send me a message or reach out on my social media platforms if you would like to talk one on one. Be sure to protect yourself and your mind.

In August I was ready to give up. There was no end in sight and I was out of options. Or at least that’s what my mind was telling me. But it all felt so unmanageable that I didn’t want to continue living in pain. Now, having lived with intrusive thoughts from my OCD and passive suicidal ideation from adolescence, I thought that I would be equipped to deal with these suicidal thoughts. However, I had never really fully experienced active suicidal ideation. I felt frozen. It seemed that the only logical way out of the pain was by stopping everything and ending my life. As soon as I realized that I was now a danger to myself, I reached out to my psychologist in quite a panic. It’s like the only thing my brain could focus on was how to end my life.

I reflect here for a moment because I realize just how lucky I am to have access to a mental health professional and one that I trust. Our system is broken and this kind of access is few and far between. If I did not have this access, I genuinely do not believe that I would be here writing this post. I mourn all those we have lost. I will fight with every small amount of energy that I have to help people in crisis and to assist those on the frontlines making these much needed changes. I am thankful that I was able to get in to see my therapist and make it through that crisis. Those were two of the hardest months of my life and I was fighting with myself to keep going. I stayed alive for my family and my friends, and out of sheer spite. I did not stay alive for myself because that was not a good enough reason at the time. I despise a lot of the “self help/self care” narratives because a lot of them push for loving yourself and living for yourself, but sometimes that is not enough. You need to find something that is strong to latch onto, and for me that is spite and guilt. I couldn’t break the hearts of the people around me because they were fighting so hard for me to stay alive. I decided I also didn’t want to give the doctors a way out of having to solve the complicated mess that is my health. So, I chose to keep pushing and then a few weeks later finally got some answers and a plan to move forward.

At the end of September I had the call that changed the game. I finally had a diagnosis. I remember tears streaming down my face from the sheer relief that I felt. I had known about Superior Mesenteric Artery Syndrome and Nutcracker Syndrome close to a year before the official diagnosis date because I had been doing so much research on my own time desperately trying to find answers. I didn’t think this would actually be the answer because of how rare the conditions actually are and part of me was also hoping this wouldn’t be the answer because of how dangerous and potentially deadly these compressions can be.

For those of you who are interested in what these conditions are, they are both compression syndromes. SMA Syndrome is when your duodenum (the first part of your small intestine, immediately after your stomach) becomes compressed between your aorta and superior mesenteric artery. These are the two major arteries that provide blood to your organs and lower body. In my case, the compression was so severe that I was having a partial blockage of my small intestine causing food to be trapped in my stomach and duodenum. But Maeghan, why is that bad? Well, unfortunately if food cannot leave your stomach then the only other way for it to get out is by coming right back up which can lead to poor nutritional absorption and damage to the esophagus due to the stomach acid. Also, if your intestine is blocked for too long parts of it can begin to die which could eventually lead to sepsis and death. Nutcracker Syndrome happens in the same area and is when your left renal vein is compressed by the superior mesenteric artery and the aorta. This causes flank pain and blood in your urine and can eventually predispose you to blood clots and kidney damage.

This creates a justifiable fear of eating, which is a double-edged sword because the more weight you lose the worse the condition gets. The only thing protecting your small intestine and veins is a fat pad, so when I kept losing weight the fat pad disappeared which made the compression worse. In my case, weight loss was directly harming me and could’ve lead to very severe outcomes like sepsis or death. All this to say, thank fuck we found the answer because I really was close to death. I could feel it in every breath I took and every step I attempted. Getting out of bed got harder and harder every day. That call in mid-September changed my life and allowed me enough room to keep fighting.

Within hours of the call with my specialist, I was on the top of the list for a hospital bed. I had calls from my other specialists to explain what was going to happen to me while I was in hospital. Number one on the list was nutrition. This was what was going to save my life. It was explained to me that I would likely be in hospital for a week or two to get my nutrition boosted. They said they would try a nasogastric tube first and if that didn’t work then they might consider more extreme measures. Fast forward three days and I got another call from my specialist explaining where I would be headed and that a bed was finally available for me. This was the best news that I have ever received in my life. I was finally being given the chance at life that I had been desperately fighting for for years.

Now when I got to the hospital the plan changed very quickly. They ran some initial bloodwork, weighed me, and took my vitals and they quickly realized that an NG tube was not going to be enough. Within hours I had 2 IVs placed and they started PPN (peripheral parenteral nutrition). This is basically getting nutrition straight into your bloodstream. I was effectively eating through my veins from that first day. A few hours later and they were placing my first NG tube as well. They needed to keep my stomach and bowels working somewhat so I didn’t completely lose the ability to eat. They then booked me in to get a PICC line placed to start TPN (total parenteral nutrition).

By the end of the first week my labs were still all over the place so they played around with my fluid intake. I was then taken for another upper GI scope to double-check that my gastroenterologist didn’t miss anything. My scope was clear, but unfortunately my NG tube couldn’t be re-placed as my throat and nasal passage were swollen. The TPN was running 24 hours a day and I would receive lipids (fats) for 24 hours a day for the first week as well as thiamine infusions and saline drips. At my worst I had 5 machines running at once with 4 different tubes going into my stomach and veins. This was just enough to kick start my body. However, I started reacting badly to the TPN and my bowels and stomach decided that they were going to stop working completely. They had to place a new NG tube as I wasn’t able to eat anything for well over a week.

By the end of week two I was an emotional wreck. I had expected that I was going to be going home soon, but because I was in such rough shape they wouldn’t allow me to leave. I was still heavily reliant on the TPN and my weight wasn’t increasing fast enough. To be allowed to leave I had to be able to sustain myself on enough food that my weight would be stabilized. It was then that psychiatry was brought in as I wasn’t coping well with being stuck in a room without windows and attached 24/7 to tubes. I mean, understandably so as it is not a normal place to see a 24 year old. My experience with psychiatry was horrible. It mirrored my awful experiences with doctors over the last 4 years who told me it was all in my head and that a good dose of antipsychotics would sort me out. Luckily enough, I have a good support system and I trusted the doctors enough to tell them how horrible psychiatry was to me and to never have them return. After that I was seen by social work, and my social worker made the biggest difference during my stay. She actually cared and worked to find me community supports and services.

During my third week I had lots of scares with my heart and lungs. Sudden severe chest pain, heart palpitations, and difficulty breathing. Nothing was showing on x-rays or ECGs. We think it might have been symptoms from my POTS. I was eventually started on a low dose of an antidepressant that is used off label to stimulate appetite and cause weight gain. Within a week of that I was starting to eat a bit more. I had to have my NG tube removed as my throat was raw and I couldn’t swallow very well. It was then that they came up with a game plan to try to get me out of the hospital. They were going to try to place a nasojejunal tube to see if my small bowel was working well enough to absorb food that way as my stomach and duodenum were the problem. If that worked they were going to book me for surgery and have a jejunostomy tube placed. One tiny problem! There were no NJ-tubes in the whole province.

Suddenly my stay in the hospital seemed indefinite and I was scared out of my mind. The thought of having to remain on TPN indefinitely, stuck in a hospital bed, was horrifying. Keep in mind that I was the youngest on my unit by about 30 years and that hospitals are not the place you want to be if you are trying to get better. Due to my mobility issues and Covid precautions, it was almost impossible for me to leave my room. I felt trapped and like I would never be well enough to be sent home.

At the end of week 4 I had an allergic reaction to my PICC site dressing and eventually my PICC site got infected. This meant that my central line was going to have to be removed and the TPN would stop. As scared as I was about having an infection in my central line, I also felt relief that I would be stopping the TPN. It was a necessary evil, but it can be super dangerous to be on TPN long term. I was then started on antibiotics and topical steroids to see if my swelling and infection would calm down. They told me that they would be placing a new PICC line in a few days in my other arm. I was not about to let that happen while my other arm was in rough shape as I was beginning to be able to eat a bit more with the increase in my medications and the introduction of actual pain medication. I made it my mission to show them that I was eating enough to keep TPN off the table.

By this time I was working with occupational therapy, physiotherapy, and social work almost every day to keep me centred and focused on getting stronger. I was having regular check-ins with the hospital dietician (without whom I wouldn’t have survived the stay, she was my saving grace and kept it 100). I was able to talk with her about the plan and we started brainstorming ways in which I would be able to return home. We eventually settled on allowing me to wait at home for my feeding tube placement as long as I was maintaining my weight. If I dropped any weight I was to immediately come back to hospital and start TPN again. I had made it! I was finally allowed to go home. With lots of work from OT, PT, Continuing Care, my dietician, and my doctors it was decided that by the end of week 5 I was to head home and wait for further treatments there.

I was so relieved. What I was expecting to be a week or two turned into 35 days in a hospital bed. I was able to go outside once during my whole stay. There were countless nights I cried myself to sleep. Summer changed to Autumn. The visitors that I had were what kept me together. To everyone who came and spent time with me during the darkest days of my life, I want to thank you with everything I have. Without seeing your faces or getting to talk about something other than medical crap, I don’t think I would’ve made it to the other side. And to everyone who sent flowers and checked-in with me, thank you. I feel so grateful to have the most amazing support system. Even people who I don’t know very well stepped up and provided me with support and connection and that means the world.

I also want to give a HUGE shoutout to all the nurses I had. They reassured me, sat with me while I cried, explained things to me that the doctors just glazed over, and listened to my concerns. They wrote up a care plan when things were getting too overwhelming and my OCD was starting to get hard to control. They really are the heart and soul of our healthcare system. I thank them so much for everything they did for me while I was there.

The day I left the hospital was bittersweet as I knew that I was finally going to be back in my own bed, but the fear of not having constant medical supervision was overwhelming. I was lucky enough to be set up with home care and to this day I still have wonderful healthcare workers coming to my house every morning to help me bathe and prepare meals. The drive home from the hospital was magical. The leaves were a bright orange and I was able to smell the ocean again. It’s the little things I missed the most. And I must’ve slept for 18 hours the day I got home. You don’t really sleep while you’re in hospital.

Over the last few months I’ve been monitoring my health very closely. I have had two trips to the ER since for some complications from my hospital stay. The first was the heart palpitations that I developed while in hospital and the second was a mild concussion. Since I was on blood thinners due to the blood clot I developed after my PICC line was removed, I had to be extra careful about any kind of injury. Oh the joys of being medically complex. I am still waiting for a feeding tube as there are still no updates on shipping dates (thank you Covid), but I have been able to maintain my weight. For that I am thankful.

My community was able to raise enough money for me to get my first electric wheelchair and that has made such a positive impact on my life. It allows me to enjoy simple things like going for a walk and has given me back a bit of independence I was desperately seeking after the hospital stay. Mobility aids are the best thing in the world. Without them, I don’t know where I would be. They are wonderful devices that everyone deserves access to.

As I head into this new year, I hope that my health will be better managed now that all my doctors know how serious my case is. I am further exploring things through psychology to deal with some of the trauma from my hospital stay and the last few years. I will forever be changed by the things that have happened, but I hope to use some of the worst experiences of my life to fight for other people in our healthcare system. No one should have to go through the things I have had to deal with. Everyone deserves access to healthcare, proper healthcare. No one deserves to be left behind or forgotten.

If anybody ever needs someone to talk to or someone to listen, know that I am always here. I may not have a lot of energy, but I will always make time for you. I want to try to help as many people as I can and create a support network for chronically ill people. I want to help you navigate our healthcare system and fight for doctors to listen to you. It can be really fucking hard, but know that there are people here to help you fight.

Thank you everyone for following along on my journey. Life 2.0 has started and I am so excited to see what I can do in the years to come now that I am on the right track. Much love to my friends, family, and support system. Thank you.

#TheChronicallyIllChronicles

[fucking-feelings-man]

My health journey so far...

Let’s go back to where it all began. My chronic illness journey started 10 years ago with a pretty severe stomach ache when I was 13. I remember laying on the couch in my home in Ontario thinking I was never going to be able to get off the couch ever again. I know, a bit dramatic, but that shit hurt! Little did I know that that was only the start and that I would continue to get increasingly worse over the years…

I remember for those first few years I would crush a whole container of tums every week. I was popping antacids like the world was going to end and sometimes it felt like it would. Hello, anxiety! I had a pretty severe panic attack in grade 10 due to the building stress related to my symptoms and the noises my body would make. Stomach gurgling and gas is not so much fun when you are a young, mentally ill teenager worried about what everyone around you will think. Add in that I was the “new girl” who had just moved to Nova Scotia. Cue Maeghan going to therapy.

After that panic attack it took me a solid two years to be able to get back into a classroom. Even still, I have anxiety surrounding classrooms and always being close to the door in case I have to make a sudden sprint to the bathroom. When you already have anxiety disorders and then you add physical symptoms on top of that, it was a recipe for disaster. However, I did really well in therapy and learned ways to control the panic and it was really helpful to learn about myself, anxiety, OCD, and depression. I’m still in therapy to this day.

After I finished up high school, I was off to university to study acting and my abdominal pain was getting much worse. I was taking the daily maximum dose of Tylenol just to be able to make it out of bed and my doctors weren’t very concerned. I was put on every PPI in existence and still, no improvement. I was told that it was probably just my anxiety – isn’t it just wonderful when your mental health history follows you to every medical appointment?

I ended up in the hospital 7 times in two years for severe abdominal pain and for excruciatingly painful periods. Turns out that on top of my digestive issues I had ovarian cysts that loved to burst every few months. Still, they would give me no pain relief. I would just lie in the hospital for hours on end as they took my blood and maybe did an ultrasound and then I would be sent home with no answers.

The period pains were eventually taken seriously after I couldn’t stand up in acting class and a classmate had to help me to the on campus clinic. This doctor said that I should never have been brushed off and referred me to a gynaecologist (interestingly enough, the doctor was a woman – funny how that works). I finally saw the gynaecologist and she immediately put me on the Depo shot. This changed the game for me as I no longer had to worry about ending up in the hospital every time I had my period. However, as soon as one problem is fixed my body has a habit of creating so many more problems.

My stomach pain seemed to increase ten-fold and soon I was back to my family doctor begging for more testing. I ended up in the hospital one more time and then I thought I had my answer. I had a pretty aggressive h pylori infection, so with a mean dose of antibiotics and PPIs I thought this would be the end. And I did feel better for about a year, but then the stomach pain came back worse than before and eating became unbearable. Finally, my family doctor put me on the wait list for a gastroenterologist.

My third and fourth year of university were intense – it probably didn’t help that I spontaneously decided to add a second major. I would finish my degree with a combined honours in acting and sociology. Even though I accomplished a lot, the physical symptoms tried to stop me at every turn. I ended up in the hospital a few more times and these flare ups always happened at terrible times. I almost missed my final exam for sociology because I had spent the entire day before in the hospital. Shoutout to the prof for letting me have some extra time to submit after I embarrassingly walked into the massive exam hall halfway through the exam (Dalplex exams are the worst, if you know you know). Her kindness made all of the difference that day. I missed my final audition in fourth year due to uncontrollable pain and not being able to keep any food in my system. I missed countless classes and presentations because I couldn’t leave my bed.

I finally got in to see a gastroenterologist at the end of my undergraduate degree and by that time I was going downhill fast. Cue countless very uncomfortable tests. Upper gastrointestinal issues are no joke because the scopes and tubes have to make it to your stomach so you have to be awake to swallow the tube when it hits your LES. Choking during my manometry was probably the funniest moment during all of the medical testing in 2019. You think choking on water is bad? Wait until you choke on water while a big ass tube is in your esophagus and stomach and you are staring at the nurse trying to calm you down with pure desperation in your eyes as tears and drool are streaming down your face. Pure comedy!

An ultrasound, upper GI scope, manometry, and ph study later, and I still had no answers. All of my tests kept coming back normal, so I was diagnosed with Functional Dyspepsia and IBS. Basically, “no cause for symptoms found” was my new reality. I started a couple of medications and could now eat a bit more, but the pain was still unbearable. I was then sent to a medical cannabis clinic and started CBD oil which initially helped. But then, you guessed it, my symptoms got worse.

Halfway through my first year of grad school I started experiencing blackouts, dizziness, eye shaking, muscle weakness, debilitating fatigue, and extreme nausea. I tried contacting my GI and started seeing my family doctor every 2 weeks. Then Covid hit and it became impossible to get adequate care. I was supposed to be getting a brain MRI, but that was pushed for 10 months. I was lucky enough to get into see an ophthalmologist and I was diagnosed with a rare eye disorder called Superior Oblique Myokymia. Once I got on medication the eye shaking stopped, but my other symptoms continued to get worse. That was the first time I heard about POTS (Postural Orthostatic Tachycardia Syndrome), but the ophthalmologist couldn’t diagnose that so I would have to wait for either a cardiologist or neurologist (neither of which were available due to Covid).

I would spend the entire first lockdown getting progressively worse. I couldn’t walk for more than 5 mins without extreme heart palpitations and blackouts. I was then told to just stop walking while I waited for specialists to start accepting patients again. My ability to eat declined very quickly and I was losing weight rapidly. I had been using canes for about a year before hand, but by July I had to get a rollator walker to be able to leave my house. My rollator gave me back so much independence and freedom. I love my mobility aids so much. Without them, I don’t know where I would be.

During this decline I had to go on a Leave of Absence from my Masters and step back from teaching. This was the most heartbreaking moment for me because so much of my identity had been tied to school and being a teacher/artist. I didn’t know who I was without actively partaking in university and performing. Cue another severe mental decline. I have had suicidal ideation in the past, but this was the worst I had ever experienced it. I couldn’t work or go to school anymore because of the physical symptoms and I was getting no answers from doctors or specialists. I was stuck in the healthcare waitlist loop in Canada.

It took a lot of work, but I was able to stabilize my mood and I am back to my baseline. Finally in October of 2020, things started to move. I got my MRI, 4 ECGs, a holter monitor, and a flexible sigmoidoscopy over the next 6 months and tried a whole bunch of different combinations of medication. Still, everything was normal. My symptoms, however, were not normal and were still severe. I had seen 3 dieticians, all of whom had no clue what to do with me. When you can only eat 5 safe foods, it’s pretty hard to make nutritional improvements. The third dietician put her foot down and started contacting my gastroenterologist directly and soon enough I got in for an emergency appointment.

This was the appointment where it was decided that I would be admitted to the hospital. I was supposed to be put on a feeding tube and have a bunch of tests fast tracked. But, it wouldn’t be Nova Scotia healthcare without a major bump. There weren’t any beds available at the hospital, so I was sent home with nothing to help improve my symptoms. It did however get the ball rolling on testing and soon enough I was seeing an Internal Medicine specialist and was booked for a colonoscopy, CT scan, and a gastric emptying study. And, you guessed it, all of the tests came back normal. What changed is the doctors started taking my symptoms seriously after they physically saw how sick I was in hospital.

Fast forward two more months and we are in the present day. My gastroenterologist, internist, and dietician are working together as a team on my case and I have lots more tests lined up. They are now checking me for rare diseases and disorders. I am also a patient at a chronic care clinic and they are examining me for other things. I was recently diagnosed with POTS at this clinic. This was the most relieving news because I finally had a name to put to these debilitating nervous system symptoms. It only took me a year and a half and 2 doctors saying it “definitely isn’t POTS” to get an accurate diagnosis.

Now I just have to wait for my upcoming tests and hope that we can find the other pieces to the puzzle. The gastrointestinal symptoms are worsening and I can’t properly do treatment for my POTS without having a working gastrointestinal tract, so the fight continues. The system here is slow and it is very hard to not fall through the cracks. It takes all of my energy to just stay on top of doctors appointments and make sure they don’t forget about me. I still can’t work or go to school, but maybe if I get some answers I can start the long journey to finding my new baseline.

I am choosing to share parts of my journey in the hopes that this can help someone. I know I’m not the only person in Nova Scotia or Canada who is dealing with the problems in our healthcare system. When you are young, chronically ill, and it’s not a simple answer, you get left behind. I want people to know that you are not alone and that there are people who have gone through similar things that are here to fight with you. You deserve answers. You are not a burden. I will help you every step of the way if you need someone.

#TheChronicallyIllChronicles