I’m so exhausted all the time.

Sorry in advance but I gotta vent for a sec cause I have no other outlet right now. I am gradually becoming more exhausted, fatigued and depressed every single day. My entire body hurts all the time, getting out of bed is painful, working is painful, taking care of myself is painful. I’ve not been able to get it officially diagnosed yet but have enough years of in depth research to know HEDS is what I have, alongside POTS and MCAS. I also have ADHD and Autism just to top it off.

I’ve got my ADHD causing shit like daily executive dysfunction, brain fog, hyperactivity, time blindness, etc, then I’ve got my Autism causing my sensory issues, overstimulation, low social battery, chronic masking fatigue, social difficulties, etc, THEN I’ve got POTS causing blood pooling, dizziness, lightheadedness, nausea, near blackouts, triggering my asthma (yes I also have asthma), blurred vision, and not to mention connected Reynard’s Syndrome causing painful numbness in joints, hands and feet, thennnn I also have MCAS causing all sorts of shit like gastrointestinal problems, random skin sensitivities and reactions, random stinging pains, a bunch of other shit, including disrupting my cycle (oh yes I’m also diagnosed with PCOS and currently being investigated for Endometriosis in my kidneys), and THENNNNNN just in case ALL OF THAT wasn’t enough, I also have to deal with constant, often immobilising joint pains on a daily basis, non stop.

My knees pop slightly out of place multiple times a day. My neck cracks and aches for hours. My fingers go extremely sore and weak after holding something for more than two minutes, my back aches after standing for an hour, my feet are always killing me by the end of the day, my shoulders feel like they’re hanging off my torso by a thread, my jaw feels like a rusty bear trap, my chest often feels tight and full of sharp pains, my elbows feel like they’d bend backwards if I move my arms to quickly, my head is always aching.

Everything hurts all of the time and I’m genuinely so tired. I’m really starting to lose any hope of living the life I wanted.

I currently have a stable, decent paying cafe job, typical 9-5 hours, 4-5 days a week, zero hour contract so days and hours can vary but it’s got structure. But it’s a very physical job that requires me to be on my feet for the whole day, often rushing around, serving hundreds of customers, working tills, making coffees, serving food, etc. My breaks are 20-30 minutes usually depending on how busy it is. Now don’t get me wrong I love my job, I’ve sort of always wanted to work in a cafe, mainly as a barista but I understand other responsibilities come with the job, and I’m fine with that.

But I’m just starting to get so overwhelmed. I feel like I can’t catch a breath anymore. I feel like I’ve deteriorated so badly in the past year or so, I used to be so energetic and bubbly, nowadays I’m just dragging myself through the days clinging onto my “social mask” so I don’t have to deal with literally everyone asking if I’m okay when I’m clearly not. Most people don’t actually want an answer to that question anyways.

I so desperately want to book in to see my GP but it feels impossible because I’m already far too busy all the time, I’m always working, and if I’m not working I’m looking after pets, or cleaning the house, or trying to look after myself, or catching up with the backlog of shit I haven’t done because I haven’t had the energy. Not to mention my GP is already hella booked up for like the next month or so.

I also feel like I hardly even know enough about HEDS to approach my GP about seeking diagnosis. I’m shit at explaining things especially when it’s about myself or things I’m struggling with. Like ffs I know TONS about ADHD and could talk about it for hours, but as soon as it comes to advocating for myself my brain shuts down.

I’m just so tired. I wish I didn’t have to come here to vent about all this shit but nobody else will listen to me. My partner is sick of hearing about it atp and he’s got his own shit to deal with already. My friends are all busy with their lives and hardly talk to me anymore, and when we do talk it’s just surface level “hey girl how you been” type shit. Nobody around me actually cares enough to listen to me talk about how much pain I’m living with. I honestly feel so fucking lonely right now. I feel like nobody really cares. And part of me keeps thinking I’m just being dramatic or I’m just overworking myself, or that I don’t deserve to complain because others have it way worse than me.

My pain is getting to a point where I genuinely think I’m going to start needing mobility aids soon. I think I might even need a carer later down the line if I keep getting worse. And I’m just so scared. I’m scared of losing my independence. I’m scared of losing my job if I get worse. I’m scared of trying to advocate for myself in medical settings. I’m scared of being excluded, bullied, judged, or discriminated against more than I already am. I’m scared of having to spend the rest of my life in so much pain, physically but also emotionally.

I don’t know what to do anymore. I’m only 22 but I feel like giving up entirely. There are an excruciating amount of things wrong with me, I feel like my life isn’t worth continuing if it’s going to be nothing but pain. I feel so depressed.

If anyone is in a similar boat to me with the long ass list of co-occurring disabilities, I have to ask, how the hell do you cope? What is making life bearable for you? How do you find the strength to advocate for yourself? How do deal with the daily joint pains and dislocations?

Sorry for the long ass post. I can’t imagine anyone will even read this dumb thing, let alone comment. But at least I vented somewhere I guess.