I haven’t posted in a while for various reasons. Going on new medication, getting used to side effects and coming off said medication cold turkey was a rough time. I wasn’t myself and frankly I was horrified by both my physical and mental symptoms. I still don’t think I’m out of the woods yet but I will get there.
I was put on Venlafaxine in February, it’s an SNRI medication which in my case was prescribed to try and suppress my REM sleep. This was meant to help reduce my nightmares and I trialled it for 5 weeks. Unfortunately, it made me feel awful and I had to stop taking it. I had nausea during the day and my excessive daytime sleepiness was even worse. I was so disappointed. I felt like it was such a waste of time and that I was going backwards instead of forward. When my sleep consultant contacted me he also decided that my excessive daytime sleepiness was at a level that made it unsafe for me to drive. This was another blow and I’ll be honest, it took me a wee while to dig myself out of the dark hole it put me in. I’m still afraid that I might slip and fall back down there and I am slowly working towards managing the beast again. I had also completely lost my funny bone which discouraged me from writing because I couldn’t string a sentence together much less write a blog post or make it entertaining.
I reread this post and I left the explanation of my state of mind there, not wanting to get into the nitty gritty of how I was feeling. But something made me revisit this part to expand on it a little more, just incase someone is in a similar position and needs to read something that relates to their feelings. Going off the medication cold turkey pushed me into a dark depression. I was scared of the thoughts that were entering my head. My rational mind knew that the sudden drop in the Serotonin that the Venlafaxine was propping up was the reason for the intrusive thoughts but it didn’t make it any less terrifying. I described my intrusive thoughts to a friend as follows. Your phone is pinging with notifications, they are the thoughts, you don’t control the timing or presence of them and you dismiss all of them but you still read what the notifications say and consider them for a moment before you get rid of them. This is how these thoughts were popping up in my head. I wasn’t seeking them out and I knew they didn’t represent who I really was but they were still popping up. I would be going about my day when suddenly my mind would convince me that my life was barely worth living. I would be lying in my bed at night only for me to vocalise that living with a chronic illness was just too much to bear, I hated my life and I didn’t know if I could continue living like this. I know I wasn’t directly saying that I didn’t want to live but it was in the same category. It’s difficult to write this and admit this because I have never wanted to scare anyone or seem like I am attention seeking. But then this lack of admittance is exactly why there is such a stigma around mental health. No one ever talks about it or relays the darkest corners of their mind to another. If you are describing how you feel to another person who doesn’t experience mental health issues then it can be easy to go inside your shell. They don’t experience these thoughts so they think that there is a level of control over your thoughts. They think that somehow you are weak. That somehow you are actively seeking out these thoughts. That somehow your ability of cope with life is weaker than them. When in reality, to witness these thoughts and to rationalise them and not pay attention to their darkness is strength. To get up every day while your mind is beating the crap out of you is resilience. To appear normal whilst battling your own mind which is trying to suffocate you with dark thoughts is true bravery. If you are reading this and you know all too well what I refer to, please hang in there. Remember your thoughts are not facts, some day you will rise again and in the meantime keep dismissing those thought notifications. They do not represent you in the present nor do they represent you in the future. Only you know how serious these thoughts are so I also encourage you to make your own judgement of when to seek help. I read a quote recently and it resonated with me a lot:
“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me’
Please don’t let this temporary rough patch make a permanent decision over your future. Please speak to someone, preferably a counsellor that can guide you through this painful time. I have taken some resources from Caroline McMenamin (@red_dutchess and founder of Replenish Tribes) if you need to get some help:
For free 24/7 support in a crisis, free-text HELLO to 50808
Samaritans – 116 123
Pieta House – Freephone 1800 247 247
Text HELP to 51444
Northern Ireland & UK
Lifeline: 0808 808 8000
National Telephone: 116 123
I have edited this blog post a number of times now. Why do I keep editing it? I have asked myself this question a number of times and I think I have finally hit on what is is. It’s the fear. The fear of being judged. Recently, I have been reading a lot about trolling and seeing a lot of influencers being targeted. As a result, I feel like people are trading authenticity for fear that they will be targeted next. The cancel culture of calling people out on social media for their imperfections, often before they have had a private moment to fix it, is terrifying for anyone that chooses to express themselves on a public platform. It’s also funny because it’s not like I have thousands of eyes reading this post, but I have to admit it has been influencing the way I tell my story. Trolls are not just taking down peoples looks, they are picking apart who people are at the very core. The chronic illness community is not immune to this and sadly there are even people with chronic illness trolling OTHER people with chronic illness. It’s a fucked up world.
The way I’m writing here, you would think I was Jane Sloan from the Bold Type tap tapping on her laptop after being inspired by the events of the episode. Maybe I am a bit inspired by Jane and Co. I have become fearful in telling a story that is true to who I am. I worry that people won’t get it. I worry that people will criticise my grammar or sentence structure. I worry that they won’t believe how seriously tired I am. I worry that I am not enough.
But then I had a thought reframe… this blog is not to be held accountable to the many high standards that we already try to meet. This is my internal monologue exactly how it is, with all the imperfection that this brings. Nobody is perfect and I have decided that I no longer want to feel bad about the way I articulate or present myself. This is my story, unedited and vunerable, no apologies necessary.
I’m also conscious that this section of the story isn’t specific to Narcolepsy and I’m trying to do more things to raise awareness of the symptoms in general. If any of you follow me on Instagram or Tik Tok you may have noticed that I have started posting a few quick videos/reels on there. It’s so hard to know what to post but I hope to reach more people that need to know about Narcolepsy. Either because they don’t know they have it or because they do and they need to relate to someone else about how they are feeling. I have also pinned a symptom check and some links on my Facebook.
Without further ado, back to the Gynae ward we go…
*10 anxious re-reads later*
When I was moved to a ward I felt so relieved. Being moved to a ward meant that I was getting slightly better and as my oxygen stats were up they were happier to release me to the Gynae Ward.
The first perk was finding out the source of the pain in my hand. The nurse who was on duty at the end of my first night found me crying silently. When she asked what was wrong, mute, I pointed to my hand.
She picked up my hand and examined it carefully. Frowning she said ‘your vein has collapsed, this is why your hand is in pain every time the pain meds are administered’.
She turned on her heel and brought back a new canula, she replaced it with ease and taped it all up. I felt so relieved. The horrible thing about when you are in pain and people dismiss you is that you feel weak. If these people are dismissing me then maybe I am being dramatic. Maybe this pain doesn’t warrant how bad I feel. Maybe it’s all in my head. It’s medical gaslighting.
I also told her I couldn’t sleep because the pain meds were making me feel nauseous. She got me anti-sickness tablets right away and I fell asleep. I slept soundly that first night.
I was on this ward for approximately a week. I had a brand new set of ward neighbours but this time, they were all there for gynae related problems. The lady to my left had a mix of gastro related problems and gynae. This hospital stay was one of many and she was well acquainted with the procedures of the hospital. She was very good at being able to warn me of the symptoms I would experience as she had had her ovary removed the year before. I remember one day I was sick from the meds and she was the first to my side with a cardboard basin.
My parents visited me every day and as the hospital visiting hours were flexible they stayed for hours on end. The lady to my left and the one opposite would sometimes gather around my bed, like some sort of little Gynae social club.
The other lady was there because she had ovarian cancer and was being treated for it. She had lost all of her hair and was recovering from a hysterectomy which was done to remove the cancerous cells. I asked her about her symptoms and she said that she didn’t have any. She had been at the GP for what she thought was a Gastro issue. Her stomach had become larger but she assumed that she was just gaining weight. The doctor ran some blood tests including the marker for Ovarian Cancer called CA125. This is the tumour marker for Ovarian Cancer and women who have it have higher levels of CA125 in their blood than women who do not have Ovarian Cancer. She told me that she had virtually no signs or symptoms but by chance she has went to the GP. I was struck with how crazy this was. Ovarian cancer is a silent killer. I was also shocked by the fact that women are not checked for this marker unless there is reason to. Why is women’s health not a priority?
As the week wore on I was in a regular cycle of taking pain meds. A memorable day was having the catheter removed. Oh yeah. As I had an epidural and was expected to be bed ridden as I recovered, this was fitted while I was knocked out. I remember when I was in HDU the physio arrived and actually took me a walk with this thing in. Ugh. It was awful and I felt SO thirsty. I had walked approx 2 metres and I was asking for water. It was brutal and I was mad that I had to leave bed as soon as that. When I look back now though I am glad, physio is so incredibly important in hospital to ensure that you recover as quickly as you can.
The day that it was removed I remember asking my Mammy to help me shower. She didn’t look thrilled by this suggestion but eventually agreed. I remember feeling so gross. I hadn’t showered in over one week and the basins that they gave you to wash yourself down with weren’t the same as a full shower. I couldn’t shower myself because I wasn’t able to lift my arms up yet because of my wound and the thing that was annoying me most was how greasy my hair was. It was rotten.
Getting my mammy to help me shower me was a funny experience. For one, all the memories of getting a bath when I was wee came rushing back. Waiting in the nip shivering while she slowly gets the shampoo bottle. Then getting said shampoo and suds in my eyes and wriggling when she washed my hair, finishing with a huff as we went back and forth about the best way to wash hair. It was as if we had blinked and 20 years had passed, instead of Loreal No More Tears (which by the way NEVER worked, talk about false advertising) it was a travel size black Tresemme bottle and Simple Shower Gel (careful not to irritate my wound).
After a struggle in the shower room, I came out all clean. I was as proud walking back to my bed as if I was walking down the red carpet. My hair was gleaming, I had a fresh pair of pyjamas on, my face was clean, was a whole NEW WOMAN. I felt good strutting back to my bed I won’t lie. It’s hilarious because the other women were smiling at me as I walked. Or maybe they weren’t and I was just grinning at everyone like an idiot.
I liked this ward, not just because it was the correct ward for my condition but because the people I met were so wholesome. The lady beside me had battled so much illness and was a wise guide in navigating the many symptoms I experienced post op. Pregnant ladies would also be admitted to this ward. One that I fondly remember was a lady who took a particular interest in my parents. She told us that she lived in a small flat in London but that she was super excited to visit a farm during lambing season with her mum. Upon realising that my Daddy was a farmer she was so interested and flooded him with questions about our family farm. It was lovely to see her enthusiasm about something that I took for granted. A green space and farm in the countryside to escape to. Another person of note was a doctor that would come and chat to me after her shift about her friend who was from Belfast and the pet bunnies her and her boyfriend had adopted. They had really hilarious and ironic names which I can’t remember anymore. I’m not sure if she was super conscious of the fact that I was alone in a London hospital at night away from home or she genuinely loved our chats. Regardless, I appreciated them more than she could ever know.
Daily life on the ward was becoming more predictable. The Lactulose shots were being handed out left, right and centre. That was the point that I knew that my days in hospital were coming to an end. For anyone that doesn’t know what they are, it’s a liquid laxative to help you have a ‘bowel movement’ – the key to being released from hospital. I took them because I was desperate to get out. Down the hatch they went day after day. A lady opposite me always complained about them and actually asked the nurse for a better tasting one. Honestly. This wasn’t happy hour lady, this was a necessity to get the Get Out of Jail free card.
Later that week, the Gynae Consultant informed me that I would be discharged from hospital. My wound was healing well and my stats were good. I remember the Greek surgeon saying that I looked so much better compared to my first round after my operation. I laughed and quipped ‘if the pale drug addict look is your thing’ and he laughed and then I laughed awkwardly. The main thing on my mind was the effect that this would have on my fertility. The consultant responded with ‘I would aim to have children sooner rather than later’ and after a brief explanation of the timeline of my biopsy results he walked off. That conversation has been repeated in my head multiple times. What did he mean sooner rather than later? Like how soon did he mean? How many years did he mean?
I looked out of the hospital window and I felt so relieved. It was going to take a few months to recover but I couldn’t wait to get home. My parents arrived and I packed up my stuff and was given a prescription to collect from the hospital pharmacy. As my wound was still fresh we decided to stay in hotel nearby for a few days before I flew home. The hotel was a street away and super close but with my massive wound it had taken a lot out of me to even get out of the ward to get into the wheelchair so walking was not on the table. I can’t quite remember why we were waiting around for ages, I think they had pretty much taken the wheelchair straight off us again when we were waiting at the Hospital Pharmacy. We didn’t realise how close the hotel was and thought we would have needed a taxi so gave it up only to sit and wait for ages on another wheelchair. We got another one eventually and off we went with a wonky wheelchair across cobbled streets.
We were checked in by a lovely girl who sympathised with my situation and explained that she had back surgery a few years before which left her bed bound in hospital for a year and meant that she had to learn to walk again. I couldn’t even imagine being in hospital longer than I was, so I listened to her story in awe. That’s the thing about chatting about your situation, you find that people also open up to you and share their story. She wished us well and handed us our key cards.
Oddly, there was an issue with the toilet in the room that we were assigned. Instead, we were given the key to another room to use the toilet. I didn’t think much of this until I had to make a trip to the toilet. What also didn’t dawn on me (as I happily hobbled out of the hospital) was that I hadn’t actually ticked off the vital bowel movement required to be discharged. If I didn’t have a large vertical wound I would have hopped and skipped out of that hospital. The last thing on my mind was if I had went to the toilet or not. As I found my way down the hall slow as a tortoise, I reached the door, swiped the key card and slowly sat down on the toilet. Going to the toilet is such an automatic thing so I was surprised when my thoughts were interrupted with pain. What. The. Fuck.