Hanging on by a thread
©caitlynmarieprints
The headline summarises where my head has been lately. Day by day it’s being pulled tighter and tighter, frays upon frays and then snap it goes. Frustration, anger, grief and trapped with no escape from the cause. The cause being my body - what exactly? That is yet to be determined.
This year has been everything I thought it wouldn’t. I’ve delayed going to NYC twice because my health has deteriorated since the end of February this year. The first time it really upset me because I’d just gotten out of the abyss of chronic migraine, exercising and enjoying it, losing the weight I’d gained from health stress and began to be able to manage my periods and endometriosis. I fell in to a pit of severe depression and suicidal ideation, climbed out of it a bit and fell off again as this year has unfolded.
I am scared more than ever now because I’ve maxed out on the one preventative pain medication I have, and the pain continues to get stronger and my leg feels heavier and weaker. Often it’s like I’m lugging along deadweight, and then when I can use it my joints ache from the weight of body and it not being used to carrying me.
©caitlynmarieprints [silly but mood]
I’ve also gained weight during this time, thanks to a mixture of medications, stress and the inability to move my body enough to either lose or maintain my previous weight. I’d have to eat something ridiculous like below 1,200 calories because I can’t move enough. It’s agitating because I’ve been trying. The yoga I was able to do in June, I can’t do anymore without triggering excruciating burning pain down my left leg. I tried using my walking pad and my leg pain is so easily triggered I can barely manage a few minutes on it.
My rollator has been a godsend for when I’m out allowing me to walk and have independence over my body with proper support. But it’s not enough, and I have real shame around my body image. Getting dressed stresses me out, I don’t recognise myself in the mirror and it’s haunting. I hate looking back at old photos because the person in those are so far from who I am now, and she looks completely different.
I am triggered by everything, seeing young couples walking out of a supermarket together normally as I struggle to hold myself up with my rollator. Social media is hard, my ability or want to create is not there. For two reasons, I don’t have much energy to do so, and daily updates are usually me exhausted from work and trying to get through to my day off with lots of naps and not much positivity to share.
I’ve found it hard to use BrownGirlEndo because it’s been triggering seeing scrolling through the progress of people post surgery, people receiving answers, doing active things, travelling, having children, getting married etcetera not long after I’ve struggled to stand, and be unable to, brush my teeth fully. It’s not that I’m not happy for these people, I am wholeheartedly because I’ve seen their struggle, I can feel the levels of pain in my own body and it’s beautiful to see them having some joy back.
I also find the opposite hard, seeing a lot of people struggle like myself, I just don’t have the brain and heart space to give. It’s overwhelming and I don’t have the brain space to process what I am seeing, and as inboxes pile up it makes me nauseous.
There’s an emotion that’s not really talked about enough in the endometriosis and chronic illness communities, and life in general.
That my friend is jealousy.
Being jealous of the societal perception of a healthy body, healthy friends and family, or those with similar conditions who may have it milder and it’s not those people themselves. It’s the independence and activities, like I’m not jealous of pregnancies or people running marathons because that’s not something I want in my life, but it’s the ability to do those things, and do them without severe repercussions.
I’ve not been able to travel abroad in over a year because of how my body has been and I really struggle with just short distance travel. I miss going away and exploring a new country the ability to shut off and the way your brain to experience new things. I rarely experience anything new now, my life is so monotonous it’s killing me a little.
We’ve had to delay NYC twice, the first time it crushed me and the second time I saw it coming and honestly I think it will be delayed again and it doesn’t feel like I’m going to get there
I also miss being able to cook and enjoy trying out new recipes, not just to shove something in an air fryer because I need to eat. I’ve missed big life events in my friends and families lives this year and it’s been crushing. I’ve missed being able to attend events and opportunities to be a part of them because my body cannot handle to travel and everything is in London, which isn’t very far but inaccessible to the body I’m in now.
©Bee Illustrates
My creativity is just not what it is anymore, I just don’t have the space for it with all the other spinning plates in my brain. I wanted to share helpful things about my experience with endometriosis, but at the moment nothing is helping me enough to make my days not severely impacted by it to the point it’s a detriment. I use majority my energy in work because I need some income and mental sanity that I have something of my own to do. It takes everything out of me, fatigue has been crushing. However, one positive creatine has helped and I may be a little anemic, so we can correct those. It feels like my whole life is just pushing through work and managing my health through every lifestyle thing I can manage or medical admin which makes me want to withdraw into myself further.
I try my best, keeping active and going out and doing social things at the weekend and I enjoy them even if it can take it out of me. It’s one of the few times I can get enough distraction and feel “normal.” Sometimes it’s feels like I can never catch up, I don’t have a day where I feel fully functioning. I can’t remember the last time that happened. A day where I fully enjoyed something I did without feeling either severely fatigue or in severe pain.
I also hate how much living with severe pain has made me. I have little patience, I’m snappier and withdrawn. I don’t realise it often until it’s pointed out to me and I feel horrible because it’s not the person I am and it’s not the person I want to be.
All of this feels like I’m doing everything wrong. I am trying and trying with very little overall improvement. It’s crushing to keep being met with defeat because there’s so much in believing that I am doing anything right to help myself. It then makes me stressed and eating or moving becomes impossible. I can be paralysed at the thought of making basic decisions because it feels like most of them have been wrong so how can I trust myself to decide what I want for lunch.
I am due back MRI results looking into my pelvic nerves to see if there’s any evidence of endometriosis or literally anything that could be behind this hell. I feel so uneasy like I want to be put out of my misery. Do I need to prepare for a surgery? Will the chemical menopause help relieve symptoms? Are the side effects of it worth doing to lower the pain in my body? Do I need to think about my fertility and whether I get a choice of having child? Does that decision need to be made immediately or do I have time?
Or do I need to prepare to fight through another avenue for answers? Prepare for more testing, more poking and prodding. Reliving all my medical history and trauma to another specialist. I just have the little fight in me and even that thread that keeps me going when literally nothing else does, my partner, my cat and my home. This little life I wouldn’t change. Two things that I can both immediately mentally and physically hold onto when everything in me is telling me to let go.
Living with suicidal ideation is challenging because it went quietened for a bit and even went away in bits of August. However, it has the easy ability to sneak back, sometimes it’s easy to snap myself out of it, sometimes it is tormenting and at other times it feels like a weird trance like state of dissociation. Visually it feels like a heavy fog over me.
When in the midst of deep depression it’s hard to keep this in check and on good days or just fine days it can give an illusion of better. But then the few days where my body feels like it can stop, it’s when the heaviness settles in and within a therapy session I realise the weight of what I’m carrying at this moment and it’s a lot.
I know the cause of my depression and suicidal ideation is how severe my average daily pain levels have become, the lack of answers for it and therefore no correct way of managing it. No real way of being able to live with it.
©Bee Illustrates [I love her art]
In the meantime, for everyday to not to feel like a big pile of dread it’s the small things that keep me going like my cat biscuiting on my lap, the weather getting cooler so I can enjoy a hot bath, going for a matcha and walk with my partner, pizza nights with my best friends, chatting with my family, low effort baking and having supportive groups outside of social media with now good friends from the endo and chronically ill community. A support system that is keeping me going even when I don’t I feel like it.
It’s now I understand the meaning behind a rough couple of years, I just hope mine are over soon.
