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hazel2468 · 6 years

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It’s 5AM and I’m Chronically Ill

It is four-thirty in the morning on a Monday. I just emailed out of work for the third time this month (field placement). And it’s times like this that remind me that I really am sick. It’s not something I ever forget, but when I’m having a good day or a good week, or even sometimes a good month (rare), I forget how vulnerable I am. (Cont. under the cut)

Something I don’t think that people really understand is that, when you are chronically ill, common colds and headaches and allergies all pile on top of what you are already dealing with. Even my GF, who is one of the most understanding and loving people when it comes to my illness, said that “It’s just a cold” when she got sick last week and I expressed concerns about catching it (which I have. Great.)

For me, it isn’t just a cold. It’s lungs that go into panic mode and then refuse to work properly for months, months after the illness itself has passed. It’s a body that is already more susceptible to weird temperature changes and exhaustion putting in over-time. It’s the knowledge that if this common cold goes a little too deep, a little too fast, I could end up in the hospital with a machine breathing for me, because my lungs are at 75% on the very best day possible and at 60-50% on a normal day. It’s near-constant painful, wheezing coughs that make my ribs shake and render me voiceless. It’s knowing that I am getting sick because I have less and less spoons in the days leading up to it, and not being able to do anything about it except make sure my inhaler is fresh, prepped, and nearby in case my body decides to do something especially shitty. It’s making sure I have a fresh garbage bag in, just in case my lungs and stomach team up and make me cough so hard I vomit.

Healthy people don’t understand that. They see a common cold as just that- something common. “Aw, I’m sorry! At least it’ll be gone in like, a week!” No. I had a cold in November of 2017, and I didn’t stop coughing until freakin’ June, 2018. And by “stop coughing”, I mean people stopped asking me if I was sick and assumed it was an allergy cough because it was less constant and less painful. People see me with my rescue inhaler, my daily inhaler, and my thyroid pills and assume that everything is fixed, and it isn’t. Those keep me functioning, they keep me able to do basic things, and they’ve quite literally kept me alive for years. But the symptoms are still there- I still have fatigue, I’m still super sensitive to cold (fun fact, a weird symptom of hypothyroid is always being colder than everyone else! The more you know!) and I still have days where my mood just drops, hard, and leaves me feeling empty and awful. My inhalers let me do things like walk outside for more than ten minutes, let me maybe take one flight of stairs on a good day. They let me sing. But when something gets me, even a common cold, it goes right to my lungs, and my meds can’t help me. All I can do is go to the doctor, let her tell me that my lungs sound clogged, working at less than safe capacity, and pump me full of steroids. And if those don’t work, antibiotics always do- the downside being that steroids never work and I always end up on antibiotics. Which fucks with my birth control, which fucks with my cramps and stomach regularity, which- well, you get the picture.

I’ve never really talked about my chronic illness before, I don’t think (to be fair it is almost 5 am and I am feverish so IDK what I’ve talked about before), but I’ve wanted to for a while. A lot of you here on tumblr share experiences like mine, and you talk about the shit that happens and I read it, and it just... makes sense. I relate to so much of it. Fuck, when I first read about spoon theory for the first time I just sat there wondering WHY I hadn’t heard about this before, because it fit me so well.

And sometimes I wonder if I have a right to identify with the chronically ill community, especially on good days. There are days when I have more spoons than I need- they’re still limited, I can’t just go take a hike or run off on a random adventure, but I get everything done and have some to spare. I’m privileged that I have access to healthcare and medication, and that I am (for the most part) well controlled enough that I can predict my flare-ups. But it’s also something that is constant, it’s chronic, it’s always present and always there to influence me and what I am capable of. And I guess because it is hitting me particularly hard right now, I just wanted to talk about it.

And at 5 am the only people I know who are awake are you, so.

#chronically ill #spoonie #this really fucking sucks #and i have another hour before i can take my inhaler again and it fucking hurts

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onisionhurtspeople · 6 years

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wait are you joy sparkles bs or do y’all both just have the same conditions (fibro I think?)???

I think this is the same person who sent me this question too?:

I have a strong feeling you might not answer that so imma just say this, if you ARE, you might wanna rephrase that one post that mentions the autoimmune thing. If not, I’d still do it cause it’s almost VERBATIM the same kinda shit she’d say about forgetting pronouns. And idk who you are but I know that joy was doxxed before so you reeeeally might not want anyone else picking up on anything even like, similar to her >.>

Alas, I am not Joy Sparkle BS, although we do have some similar medical issues in terms of the fact that we both suffer from autoimmune disorders (different ones, though - I have Hashimoto’s thyroiditis, she ended up being diagnosed with (I believe) polymyalgia rheumatica in the end, if I recall correctly). Many autoimmune disorders include a symptom called “brain fog”, which is exactly what it sounds like - memory loss, disorientation, confusion, cognitive difficulties, your brain feeling empty and just completely disconnected from your physical and mental environment. Have you ever had a “brain fart”, where you just suddenly completely forget what you were about to say (particularly if you’re speaking in front of a large group of people, or you’re giving a presentation in front of your class)? It’s like that, except all the time.

On the Internet it doesn’t seem so bad because of the fact that I can sit here and craft a perfect response for 45 minutes and anyone who read it would be none the wiser, but in real life it’s almost impossible for me to have a normal conversation because of the fact that I have to pause every 30-60 seconds while my brain staggers to try and remember basic words or what kind of point I was trying to make. When my brain fog was at its worst (earlier this year), it was so bad that I literally didn’t say a single word out loud for about two weeks, because I just couldn’t remember anything. I couldn’t remember words. I couldn’t remember how to structure a sentence. I couldn’t remember the rules of engagement for social interaction. And even if I could remember those things, by the time I was ready to start talking, I would almost always end up forgetting what I wanted to say to begin with. It was that bad.

The fact that I have an autoimmune disorder too (and that we had a lot of the same symptoms) is the reason why I believed her about her health struggles even when other people thought she was lying. I know it sounds unbelievable to your average person who doesn’t have this type of disease to imagine how one person could be experiencing literally hundreds of symptoms without being a dramatic, attention-seeking hypochondriac - but having experiencing it myself (including the disbelief from others, even people who knew me very well), I did believe she was telling the truth.

That said, though I didn’t think she was being dishonest about her symptoms, I do absolutely believe that she was using it to her advantage in order to gain sympathy, validation, attention, and monetary support from her followers. Not so very unlike Onision, really; she used her disease as a tool to extract resources from her fans, just like he does. I understand now why she was so good at reading and understanding him - she uses a lot of the same manipulative tactics that he does.

AAAAANYWAY, sorry for this irrelevant tl;dr. Hopefully I answered your question satisfactorily. =]

She deleted her YouTube account a few months ago, too. Sometimes I wonder if she’s really gone, or if she’s just managed to cloister herself away on YouNow with her small but loyal following of teenagers who worship her and hold her in the highest esteem possible.

#question #personal #joy sparkle bs

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mental-health-advice · 7 years

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I'm on XXmg elvanse, get too hyper on Xmg. Ive been ill and My GP is assuming all my health problems are psychological which I understand but we're checking for thyroid issues etc. I have had lung infections for while. On my meds i can get shortness of breath and palpitations but its related to stress and being overwhelmed. Anxiety. But Ive been wondering if I'm overmedicating because of these problems? This stress can be dissociating and comes with emotional issues. On good days the meds are

The meds are great, however I do feel overly flat or calm but I generally never get to be so healthy minded, including good sleep, no smoking weed and eating well. Should I try make adjustments or should I contact my ADHD specialist to help with these other problems. Idk what to do, Ive missed 2 appointments, and also an appointment to get an ECG fitted for 24hrs. Idk how to rebook the appointment. I don’t want to ask family they can ruin me mentally for a month. Friends are no help.

I have no sex drive and no real feelings for people. I dissociate quite a bit, Ive just sent an ask in relation to my ADHD medication. I'm talking even my friends or my family, but I feel an intense drive of protection for my family that's angry and terrified. But I don't feel much. I'm distant from the world. I don't feel derealisation etc anymore but I lost time or get confused by my thoughts or im not sure what i said as supposed to mean and I'll misunderstand it? Idk what's going on with me

Hi darling,

I think it’s really good that your GP is checking whether your current health problems aren’t anything else, rather than psychosomatic (which is when psychological issues are causing physical problems). Better to be safe than sorry, so it’s always good to check to be sure! Then if they can’t find a physical cause, they can start thinking more about the possibility of psychosomatic issues.

I understand your concern on whether you might be overmedicated, however that isn’t a question we can answer. I think it’s important you address this concern to both your GP and your ADHD specialist (and if another doctor prescribed you the medication then to them as well). I strongly discourage you to make any adjustments yourself. Medication is such a complicated matter and any changes should always only be made under the supervision of a doctor, if recommended by a doctor.

Rebooking appointments can definitely be difficult sometimes. Did you get a referral to get this ECG? Because then your best bet probably is to contact the doctor who referred you for it, and they can contact the place again to make sure that you get another appointment. Or if they can’t do this, then they can definitely give you advice on how you can rebook this appointment! With your ADHD specialist, I’m assuming they have some kind of practice that they’re part of? You can call this practice during work hours, explain that you’ve missed some appointments and that you’d like to schedule a new one. If they don’t really have a practice, then it might be more difficult to reach them as they will be in sessions often, but you can always choose to leave a voicemail and ask them to call you back to schedule a new appointment. Or if you have an email address, you could send them an email. If the place isn’t far away you could also go there and schedule an appointment right there and then.

When it comes to your dissociation, you might want to try out grounding techniques. We have a page listing a lot of different ones here. Different techniques help different people, so it can take some trial and error to find the ones that work for you. My personal favourite is the following one:

Describe 5 things you can see;

Describe 4 things you can hear;

Describe 3 things you can feel;

Describe 2 things you can smell;

Describe 1 thing you can taste.

I hope that this was at least a little bit helpful lovely! I’m sorry that I can’t give you any advice on what to do with your medication, but that really is something a medical professional needs to look at.

Sometimes what seems impossible, is just hard.

Keep fighting beautiful ❤

Love Pauline

#mental health #advice #advice blog #medication #elevanse #ADHD #attention-deficit/hyperactivity disorder #ECG #thyroid #physical issues #health #dissociaiton #stress #mhapauline #Anonymous

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