#ever since this chronic fever & fatigue shit started though

[beazt]

I wonder if there’s any way I can get my Medicaid to cover a shower chair :/ or if there’s any local resources that would donate me one. Unlikely but I should explore it. I’m sick of taking a shower so short I don’t even get to clean myself as well as I’d like and still coming out of it feeling like im dying and exhausted for the rest of the day/night

[colitisandme]

There seems to be some kind of misconception, that having an invisible illness makes you invisible. It does not. Although it certainly can make you feel like you are. An invisible illness, by its very nature may present no visible symptoms, may appear like nothing is wrong. You may look perfectly ‘normal’, you may sound ‘normal’ but an invisible illness is sneaky and disguises itself so it can surreptitiously slink it’s way into situations, circumstances, meetings or gatherings undetected and rip apart your body from the inside, cause chaos and general destruction in every part of your being whilst leaving no trace on the outside. Much like a spy, a ninja or an assassin. And yet whilst silent and unassuming on the outside, on the inside this invisible illness is violent, loud, angry, suffocating, deadly and consuming. It can consume your whole world and just because it’s not seen, it doesn’t mean it can’t devour everything in its path.

My first invisible illness of glandular fever was met with raised eyebrows and suspicious glances. “You don’t look ill” my teachers would say. What the hell does that mean? Don’t look ill? If they meant my leg wasn’t hanging off then no I didn’t look ill. If they meant I wasn’t vomiting on my fellow classmates then no I didn’t appear ill. If they assumed because I wasn’t standing in the middle of R.E wailing and clutching my stomach whilst turning a lovely shade of puce, foaming at the mouth and gnashing my teeth I wasn’t ill, then no, obviously I wasn’t ill. Not at all. Sure. On the outside my body was playing tricks with people. I may have looked okay. I may have been able to speak in coherent sentances, bid hello to my fellow man, and go through a whole day without turning yellow, develop cold sweats and break out into a pox. It doesn’t mean I wasn’t ill. I was ill. I assure my bullies who liked to debate if I was ill or not whilst verbally and physically pummelling the crap out of me, that every day my body and mind felt like I had run a marathon wearing a space suit, weights and flippers, that to concentrate on the joys of Physics, I had to harness every ounce of concentration I could possess, not to curl up on the floor and go to sleep because the tiredness was enveloping me coaxing me to give in and take a nap on my study book. That the shaking in my right arm was not there for shits and giggles, nor was it because I woke up and decided that a fun way to spice up my English lesson was to become a human vibrator. Funnily enough it wasn’t on my agenda.

Why does an invisible illness have to have a face? Why, because you can’t understand it does it make it, any the less real or any the less life changing? It’s ironic that the more invisible the illness made me feel, the more I wanted to scream out “I’m here” so people would see me, understand my illness, accept my illness and as a result would treat me like I was visible. But the more visible the symptoms were, the worse treatment I would get, so I tried to make myself just as invisible as the illness and hide the symptoms as much as I could to stay safe and in control.

An invisible illness doesn’t have to be a physical illness. Depression, anxiety, MH difficulties, Chronic fatigue syndrome, self harm, ME, IBD - there are so many numerous invisible illnesses. Although different in their make up., The results of having an invisible illness can be very similar. Isolation, loneliness, lack of finances, sadness and frustration can all be bi-products of an invisible illness, and several of these made me feel worse than the diagnosis itself.

When I became diagnosed with IBD, My life changed over night. I have always been incredibly sociable. My whole world revolved around people and making others happy. Because I couldn’t fix myself I would help others. I guess I wasn’t comfortable being around my own self nor listening to my own thoughts, which to me sounded like a very loud, very enthusiastic, one man band, playing the one tune he knows over and over again, and even though the audience has gone home, he yells the lyrics anyway, screeching over the symbols and accordion hoping to get some attention and maybe applause, but instead he gets shouted at to ‘shut the hell up,’ and ends up with fruit thrown at him by angry neighbours trying to sleep. But when I imploded in spectacular fashion, I was forced to spend huge amounts of time on my own. I had no choice. My husband worked, my friends were busy, my family doesn’t live near me. I couldn’t get out of the house because I was physically and also mentally too unwell.

At the beginning, just walking to the bus stop felt like I was drowning in quicksand. Being in a crowd used to make my heart race, eating out used to cause me distress and anxiety. Because my body and mind simultaneously waved the white flag at the same time I had no reserves. I was signed off sick, so was let go from work, I couldn’t pop out to see my friends so I spent days by myself. I was stuck. I couldn’t fight. Whereas before I would stubbornly kick and scream and drag myself through what ever I was thinking or feeling until I saw light on the other side, I couldn’t do that. I had to ask for help (which I hate doing) but even when I did, help didn’t come. I waited 3 months to get mental health support for depression and anxiety and I have so far had zero help, support or guidance from conventional doctors since being diagnosed. I became incredibly lonely, isolated and invisible again. All those feelings I dealt with when I was in Secondary School came flooding back. It was an effort to get myself out of bed in the beginning. It was hard to eat, I looked like a ghost but because my body likes to deceive others, especially my doctors, my blood work, my temperature my SATS were all okay and so I remained invisible. Even though I was admitted to hospital because I felt like my insides were being torn apart by wild horses, I remained invisible. Every time my surgeon came round to my bed he genuinely looked like he might cry, because he couldn’t patch me up, take something out or put something in to ‘fix’ me. At this point I felt like I was being held together with blue tac and sticky backed plastic, but still remained invisible. I left hospital with 9 boxes of drugs, still in pain and feeling like I might turn into a human sprinkler due to all the holes they put in me, not fixed, not better and still very invisible. Apparently looking like the Crypt keeper was not enough to make me less see-through, and because my illness was invisible I was thrown to the back of the line.

I am not going to lie, spending every day by yourself bar a couple is hard. Evenings were better because I had company, but the days were hard. I spent huge amounts of time by myself and I was very scared, as I only had myself for physical company and I didn’t like myself. I was worried how myself and I would get along in confined spaces, and I had genuine concern we would tear each other apart like savage dogs. But then a wierd thing happened. Because I was so physically ill, I had no room to deal with my mind. The physical symptoms took over my body with such force, I had no time to think. I had no mind space to worry about anything other than my body and getting through the next moment. And so all those worries and anxieties and pressure I piled on myself that seemed so important before, pailed into insignificance. So strangely little by little, I started to get along with myself. I tried crafts for the first time (my friends got me a care package when I first became ill and one of many items was a make your own felt sloth) and when I finished him I was truly proud. I got a happy diary and wrote in that, every single thing I accomplished, be it walking to the bus stop by myself, chasing up an appointment, cooking dinner, having a shower, getting dressed etc took on such huge significance, I truly became proud of myself, because of the monumental effort it took to complete each task, every little thing I did was a victory. Every step I took in the right direction I congratulated myself, and so the negative thoughts I had about myself faded and I started to live for myself. Which was a novelty.

As my confidence grew, I began speaking to inspiring, beautiful people. I nourished my soul by meditating, practicing mindfulness and gratitude as well as working on healing my body and as I did I realised, that my whole life I hadn’t just been living with an illness without visible symptoms, and wasn’t just invisible to others, I was invisible to my self. And now slowly, I was beginning to see myself without the criticism and self hatred and it was eye opening.

Even though IBD is still invisible to others, to me, it’s visible. It raises holy hell in my body and makes me look like a bum with eyes. I hate that there is such a stigmatism and lack of awareness and understanding surrounding invisible illness. I despair that professionals and the community close their eyes because it’s easier to do that then look at the bigger picture. And I am sad that there is not the same help and services around for those living with invisible illness than other illnesses. And I guess that even though others may not see, understand or accept us and the illnesses we present, the most important thing is we make ourselves visible. That we see, love and accept ourselves and not let our invisible illnesses control us, govern our lives with fear or isolate ourselves. By loving ourselves. By celebrating our achievements and our victories and by embracing ourselves, illness and all, We come out of the shadows, push through loneliness and isolation these illnesses bring, and with a little bit of self love, and self kindness, we cease to be invisible to others but most importantly, we cease to be invisible to ourselves anymore.

[trashylvania]

okay so... last wednesday, i had a weird heart attack-ish event and reluctantly went to the ER, where the bloodwork indicating whether or not i had a heart attack was iffy and weird but they decided that i was aight and sent me home. but for days afterward, i had residual heart pain, pain and difficulty breathing, weakness/fatigue, constant palpitations, and my heart felt like it was straining with every beat. when i made my follow-up appointment w/ my primary doc (which is necessary following an ER visit,) the front desk asked if still had these symptoms, i was like ‘yeah it’s less severe but still sux,’ so they transferred me to the nurse, who told me ‘uhhh you need to go back to the ER.’ so last monday, i got to enjoy yet another ER visit, which was similarly uneventful. they didn’t run bloodwork for anything (?!) but told me again that it wasn’t a heart attack. 

the attending ER doc asked me where the pain was, so i indicated my whole chest; when he checked for tenderness, the right side was painful because in retrospect i unwittingly subluxed my sternum (thx EDS) and when he asked if that’s where the heart attack-ish thing occurred, my tired ass mistakenly said ‘yeah’ even though it occurred on the left (where, you know, the heart is.) i have this thing where i’m intimidated by doctors bc i want to be a doctor, and i’m always worried that they think i’m a fool, so i panic and occasionally mis-report shit. this is bad bc my heart still sux (my sternum on the other side of my chest is still subluxed but the pain is dull, which is a diff kind of pain than whatever my heart is doing.) i may or may not have completely screwed myself, bc something did happen to my heart that i have never experienced b4, something that scared me even tho i’m usually not scared by the annoying stuff my body does. i may never know what actually happened, and when i lay down at night i’m suddenly hit by the realization that my inability to correctly report my symptoms might leave me open to having another heart episode like that, which will again be dismissed bc my shitty misreporting is on record and might be the eternal comparison for any future episodes i may ever have.

still, the ER doc was cool and didn’t dismiss me, since i’m chronically ill and have pre-existing cardiac issues (sinus tachycardia, which is thankfully controlled by meds.) he told me that there must be an underlying cause for whatever is causing me to feel like i’m having heart attacks; it’s not EDS, so i asked if it was my fibro, and he said ‘ehhhh i think it’s something else.’ i’m currently going through a painfully slow process of multiple docs trying to figure out some mysterious neurological symptoms i’ve had for a year and a 1/2 now (embarrassingly obvious muscle spasms, numbness/loss of sensation, tingling/burning pain, weakness, tremors that are way worse than before, a couple episodes of vision loss, and some other weird shit i’m forgetting) which i suspect is MS, but my docs are either tentative or dismissive about it, despite MRI results that suggested demyelination. he checked out the areas that have lost sensation (left foot and lower leg, upper left of my back) and told me that there’s definitely something there. he said that MS diagnoses are tricky, but it’s not impossible, which is terrifying bc he only spent like 10 minutes examining me but still concluded that MS should be given more consideration.

what’s currently worrying me now tho is the thing i didn’t go to the ER for -- my kidneys. i’ve had kidney pain for like a week and a 1/2 now, but since i’m used to having daily back pain i’ve been dismissing it, and my heart issues eclipsed any concern for my kidneys. however, my urinalysis from both visits looks bad. like, i don’t want to go wild with assumptions b4 i see a doc, but i have protein, blood, granular casts, high levels of WBCs, bacteria, AND epithelial tissue in my results. i’m p sure that those results loudly scream ‘KIDNEY DYSFUNCTION HOLY SHIT!!1′ which isn’t a UTI (i’d feel that) so i’m thinking kidney infection? this is gr8 bc none of my illnesses cause kidney involvement. for whatever reason, the nurse in the ER asked me like 5+ times if i had a fever at any point recently, and i’m like ‘idk i don’t rly take my temperature but i guess i get rly hot sometimes?’ are they worried about inflammation? nothing i have causes inflammation. i’ve also become rly dramatically photosensitive lately (i can’t be in the sun for even 2 seconds without feeling like my body is going to collapse) and i’ve been irritated when applying makeup lately bc i’m getting redness in my cheeks and a lil bit on my nose, so i’ve started using tinted moisturizer and concealer even tho i’ve never rly used those. 

all of these things that have been annoying me (kidney pain that i have literally all day all of the time, randomly getting rly hot, being suddenly intolerant to sunlight, and this weird redness on my face) might be adding up to something serious. i have this sinking feeling that shit’s about to get real for me, in a way it hasn’t before. SLE runs in my family. the same woman i inherited bipolar 1 from has SLE. i fucking brought up the possibility of SLE to a former doc when i was 18, got practically laughed out of his office. i brought it up a few years ago again, got a negative ANA, got referred to a rheum anyway who said i was fine (which made me feel like such a fool, esp bc a student doc was there which always makes it worse.) i will SCREAM if, after all, i have SLE. i will scream. like i honestly cannot handle another chronic bullshit thing but i’m trying to live in denial until i see a doc

whatever

[internal--external]

how did it happen?

The funny thing is I ask this to myself a lot more than people ask me. How did I get lupus? I'm the kind of person that needs to know, "how?" What happened?

Did some of my cells just randomly decide to "get" lupus? Did I eat too much this or not eat enough of that? Was it because of that one time I had 105F fever as a baby? What did *I* do to cause me to have lupus?

The truth is I didn't do anything.

What I've been trying to accept since being diagnosed is that there may never be an answer in my lifetime, or ever. The only thing I do know is how I found out. Finding out that you have a chronic, possibly life-threatening disease is kind of a ~big deal~. But it took me some time to fully realize that this thing that I have is for life. So I’d better get comfortable.

Over a few years, I felt like I was waiting for one thing: a doctor to put on my medical records under conditions: "SLE" or systemic lupus erythematosus. I knew something wasn’t right with my body and going without professional validation was starting to drive me crazy. It is exhausting, physically and mentally, to not have answers for why you feel like shit. Even though you don’t want something to be wrong, it is a relief to get a diagnosis. I remember waiting for blood test results and secretly thinking “I hope it comes back bad” because then, there’d be an answer, a reason.

On average, it takes up to six years for a person to be officially diagnosed with SLE. For me, it was under three years. I got really lucky. I couldn’t even imagine going six years without knowing what’s wrong with me or how to treat it.

It’s hard to say when it started. The symptoms are vague - fatigue, joint pain, rashes, fevers - anything can cause that stuff. I had really awful eczema when I was in elementary school - maybe it started then. I had knee pain so bad as a teenager I ended up needing physical therapy - maybe it was then. In high school, I was always tired but there was always an excuse like long hours at tech crew, high-level classes, AP Art, staying up too late texting. All my symptoms seemed “normal”. Side effects of life. Until they weren’t.

When I was 18, I got general bloodwork done at my first Big Girl doctor's appointment. The results came back with a red flag. Basically, I had elevated liver enzyme levels. As an otherwise healthy, young person, it didn’t make sense to my doctor and it definitely didn’t make sense to me. I can barely even tell you what liver enzymes are. Then it came time to play a long and annoying game called “rule it out” because that’s all doctors can do sometimes. I saw two different gastroenterologists and a rheumatologist and after a bunch of tests, ultrasounds, etc. there were little red flags here and there but nothing that could pinpoint a cause or disease. This is when I first got tested for antinuclear antibodies(ANA) and got positive ANA results. A positive ANA means that these antibodies are present in the body at higher than normal amounts. This is a sign of the immune system acting up. Positive ANA, along with other symptoms, is one of a few ways to tell if a person has an autoimmune condition. But the mere presence of Positive ANA can also just be a fluke - anyone can have ANA in their system if they have a virus or are taking certain medications, etc. So I had some symptoms and I had the positive ANA but this still wasn’t enough for a real Answer. For over a year my doctors continued to re-test me every few months. This meant I’d have to travel home from college, then to the doctors, and get anywhere from 2-6 tubes of blood drawn. Add in the fact that I have really small, hard to find veins that only experienced nurses can handle. It wasn’t the most fun time in my life, to say the least. I was young, in college, and I didn’t want to worry about my health in this kind of way.

I would like to say that even though my experience seemed, at the time, really bad it could have been so so SO much worse. More on that later.

During all that, I had a reoccurring rash on my chest. It didn’t hurt or itch so I didn’t think much of it but after it came back a few times, my doctor finally asked me if I wanted to get it biopsied. I said yes and they carved out a little piece of skin from under my boob - I still have the scar. The results came back as positive for SLE. Even then, I was still only diagnosed with mixed connective tissue disease - a general autoimmune disease. It took about a year of reoccurring symptoms and rashes for my rheumatologist to officially say “yeah, I think it’s lupus.” And that’s the most guarantee I’ll ever have.

In 2016, I was prescribed a daily medication to help manage symptoms and I’ve been on it ever since. It is definitely not a cure-all. There isn’t one, but it helps. I think the most fascinating thing about Lupus is that it can be so different for different people. I’ve heard the horror stories of the disease effecting lungs, kidneys, the heart…and it can get really bad - life-threatening even. I know people have died from this. I know some people can barely walk, can barely work, can barely live their lives because of this disease. Thankfully, that isn’t my story so far. My story is weird and complex, more than this post can convey, but I am so grateful that it doesn’t have me in the hospital struggling to breathe.

Ironically, I am grateful for my health.