I feel like my illnesses are holding me back in work and no-one cares
My illnesses are not even that severe, they're all mild (partly why people just push it to the side or the doctors/specialists think I'm overreacting because they've "seen worse". I know there's worse than me but my illnesses still have an affect on me!), and they get worse/better at random times. I have POTs mainly which can cause symptoms of CFS and my tiredness can be super intense at times. Even if I sleep well and for my usual time (it seems I need a minimum of 10 hours to feel okay), I can have episodes of a few weeks of severe exhaustion and I feel I can't go on and I just want to cry in my car between every call because I am in so much discomfort. I am so tired, I literally just want to burst into tears and that can be from a 2 hour shift.
In my job, I do 25 hours a week at most. Next week I have 12 hours. I did an 8 hour shift today and my back, shoulders, hips, knees, ankles and feet hurt (I have hypermobile joints). When I get tired, my joints become weak and I fall over on my ankles and I thought I'd pop my knee out earlier after stepping down a step, my knee felt weird and felt like it joulted. Dislocating anything is a big fear for me (I've already done it before). I've almost fallen due to my ankle just failing on me - whilst I'm standing still. It's like my brain forgets to use my muscles and keep them working (I won't even begin to talk about the memory problems and brain fog!) I've dosed up on painkillers but they've not done much. I don't know if it's normal for a 21 year old to feel so much pain after a shift. Probably didn't help that my co-worker woke my up two hours before I was meant to.
I want to take on loads of hours and work a ton like others do to get more money in but I physically can't and I feel like everyone around me in work is judging me. A small part of me is like "yes, 12 hours, less work!", but a bigger part is like "Christmas is around the corner! Why can't I work harder like everyone else and earn more money?!"
The one job I want is hard to even get and you have to have physical testing for, which will likely have long, hard and strenuous hours. Some days, I don't see that ever happening. Just telling them my conditions would probably make me fail. I sometimes wonder if I'm just a weak human being that seems to be allergic to work and wants to be lazy all the time. (I'm most comfortable and happiest when I'm not doing anything.) But then when I feel like this or when I'm having an episode of severe fatigue, my hopes of having a proper career with decent hours gets knocked. My mum sees the state I can get in but there are times she hasn't got much sympathy for me and probably sees me as a burden because I can't just take on a few extra calls here and there. She has her own health problems too and she seems to push through them better than me.
With no joint problems and no POTs causing me fatigue and heart palpitations all the time, I could achieve more, I feel. I could go for a jog without having to get my pretty useless compression socks, making sure I've drunk plenty that day and have waited an hour after food... oh and making sure I have no plans for the rest of evening because I will have no energy left/I will begin to recuperate three hours later. And then I might do all of that to find that it's a bad day and I just won't be able to jog, seeing as POTs causes exercise intolerance, which sounds like some bullshit excuse to get out of exercise but I do often get the urge to exercise, but the feelings I feel during and after make it not worth it. And I find walking will not help me lose weight. But walking for long distances causes me joint problems - I can't win. Some days I just want to jog and jog, even if it causes me pain, headaches, tripping over my heavy legs, blindness or if I pass out. Maybe someone would pay attention to how I'm feeling then. Maybe the doctors/specialists would take me more seriously.
I don't care about me anymore. :( I wish it was all gone.
@MythologicalMayhem Sorry to hear about your troubles. My mom has POTS too, so if you need to talk let me know.
I'm sorry. Pain, even when invisible is mostly understood. Others might underestimate it, but it's seen as a real problem. Fatigue on the other hand is often seen by others to 'just suck it up'. People who haven't experienced it think of it as just being tiredness when it's so much more than that. Few seem to get how debilitating it can be. It's so frustrating to deal with.
@MythologicalMayhem
Hi there! Have you had any testing for Ehlers Danlos Syndrome? CFS and hypermobile joints are common symptoms. A diagnosis might help you find specialists who will have adequate health plans to boost your energy and help with your joints. I have EDS myself and I can't do any physical labor without dislocating. It's painful and time consuming to heal after. You don't sound lazy at all! Everyone has different physical capabilities, having CFS severely impairs with your ability to continually work on your feet. Have you spoken to work about accommodations at all? If you have an HR rep at your facility you can always ask about what accommodations they might be able to implement. Perhpas performing some tasks that involve less physical demand, or changing your break times into smaller increments at more frequent periods during the day. Also do you have anyone managing your CFS symptons? Chronic pain and chronic fatigue are exhausting. You shouldn't feel guilty for feeling tired, even though I know how easy it is to question why you can't be as active as others. If you live in New England feel free to message me and I can recommend some doctors. Best of luck!!
@CourageDearHeart
Every specialist I've ever met have been awful and make me feel worse when I leave. They forget about me and one day they say I "might" have something, then say I don't have it etc. One nurse says I'm on the cusp of EDS and the specialist said "people have it worse than you" so because mine isn't severe I can't get an actual diagnosis and get correct treatment. He only became interested in me when there was a chance I was developing IBD and he was doing a study about it. He gets pissed off at me because I want a proper diagnosis and answers, I find him to be pretty rude. I've spoken about tiredness with numerous people and I've asked for more help but they say it's just part of POTs and to deal with it. I told the rheumatologist that physiotherapy didn't work for me, he didn't look me in the eye and just referred me for more physio with "better instructions", he didn't even say bye. No-one seems to realise the effect it has on me emotionally. To them, I'm someone with anxiety who enjoys complaining about my health and nothing they tell me is good enough. I don't even think I have POTs anymore, it's not a brain problem, he even said himself its stretchy veins related to faulty collagen.
I want the correct diagnosis and to see one nice, preferrably EDS, specialist every now and then. I see general medicine, rheumatology and now gastroenterology, which is a surprise as I saw a nurse and she dismissed my illness which was reminiscent of ulcerative colitis, was also rude with me but now it seems a specialist has seen my case and has asked to see me.
My boss wouldn't be very considerate and there's not much she could do to help me. I just do very few hours each week whilst my mum tries to get me more hours. But that makes me feel like I'm not performing like other people do my age.
I live in Wales UK. The only EDS specialists available are a minimum of 3 hours away from me. :\
@MythologicalMayhem
Sorry to hear you've had such a crummy time with specialists. I think it's a major problem, even here in the US where EDS is more prevalent in medical teaching and specialization. You're absolutely right that having a variety of specialists is finnicky. There's little to no communication, each doctor wants to offer their own course of treatment or diagnosis, and most of the time they're more interested in treating you like a teaching experience than a patient. You deserve respect and communication, it's terrible that most doctors don't realize that patients need those factors more than anything else.
Do you take anything for POTs? I took fludrocortisone for years which helped with my symptoms. I've also heard that some birth control pills that increase blood pressure are sometimes helpful. That's not to say those things would work for you, but they might be helpful avenues to look into. I'm not too sure about any specialists in Wales, sorry to say. Have you used any online support systems? I know there are a lot of facebook groups in the US to create local support groups. EDNF might also be helpful and the Ehlers-Danlos Society might point you towards people in your area.
Is there any way you could try to take on hours in a new kind of profession? Maybe taking some classes so you could do coding or typing? There're always dictation jobs that can be done from your home. I know that's a vague suggestion, and probably not very helpful, but I know I always feel better when I'm being "productive".
@CourageDearHeart
I don't take anything for it, just manage it and see specialists every few months. I am in some groups for POTs, EDS and IBD but everyone seems to be more severe than me so puts me off posting a lot.
I have thought of working from home but the only time I ever go out is for work so I don't think it'd be good for my mental health.