I feel like people dont get it, and to be honest I didnt really get how real and scary chronic illness is. I think you see a list of sysmtoms such as fast heart rate, dizziness, faitgue,pain. And you just dismiss it. But the best way to describe it is like living with a permant hangover at least that is what its like for me. Its tiring have to learn so much about yoru health, it consuming your life. It almost becomes your hobby or special interest except that you dont want it to. You look back through your gallery at a time where you could dance, and even though in some of those vidoes i was in pain. Ignorance is bliss in that way. Unfortutly my body will no longer let me ignore it.
Being ill is the fear that one day soemthing will happen and no one will be there.
Having a falre up episode at work, vut not wanting to make it noticeable, as you dont want to be fired. And you need this job.
Looking at unis and having to contemplate weather you will ahve to be home forever.
Its getting fed up of having to plan around it.
Becoming selfish to what is going on with other peoples lives, as you heslth seems so all consuming.
But back to what it feels like, i first started realising it through headaches and faitgue were i would have to take days off school as I would be in pain but i brushed it off as depression. And then in summer it got worse, and i have no idea why. I acught this cold bug that was weird looking back it could of been covid but my only symtom was dizziness and sort of feeling off so i thought nothing of it. I was ill before, i seemed to be getting ill alot but then i put it down to alot of stress in my life. But summer I started to get headaches, and faitgue that wasnt jsut aflling asleep on sofa. But a sore throat faitgue that felt like i had the flu with muscle aches that would go away after i rested for a day or two. I contuined to work but i found it diffcult as it was a very active job and stairs started to get diffcult for me i was constantly gettting spots in my vsion and falling up the stairs. I would get extreme faitgue, and started to not like going out to see friends as much, especially anything active. I stopped eating duirng the day as it seemed to make me better to not eat before work. I would someytimes sit in work toilets thinking I was gonna vomit but i thought it was just anxiety, so I was getting constantly frustarted going to see therapists. I started to think soemthing was off when i went to see my granny, and i was plagued by the sore throat faitgue as long with stomach pain and nausea. And i started finding the gym really hard but i thought i was just being lazy and complain of being so tired after just an 4 hour shift. It started getting more noticebale towards the end of august, i went to Dublin and several times I had to sit down on the floor or find a chair as i thought i wasg onna keel over.
I tend to describe my headaches as 3 types the stabbing pain i get all of the sudden if i swallow or get a dizzy spell, all over head pain along with stomahc and leg pain that i never quite know where the pain is,the pressure on one side of the head that grows.
A weird thing I got over summer is that I started blowing out loads of clear mcucus, i think this is a sign im dehydrated but i drink loads of water, if you know me youll know i always ahvea bottle of water with me. Unfortutly this has got worse after several colds and a chest infection, that now every so foten my body feels like im drowining in fluids, and i struggle to breathe, and make a garggling sound in my throat like im in water, i try to cough it up, this can cause me to be sick. My hands go purple, i feel like im suffocating.
But anyway back to timeline, once I was back from dublin, i got really dizzy spesll, i ahd been on the go alot the day before, i got a migriane and had to go home, i took my blood preassure and heart rate and it was realy high, and for some reason my temerpature was low. This inspired me to get a health watch, were i was surpirsed that my heart rate raises, when i stand up, or go up stairs. I told a doctor about it, but he dismissed it as IBS nothing serious, at this stage it was sort of still ignorbale.
So I moved to uni, i thought i might have pots, but I was like oh its not that bad. But boy was i wrong. I foudn it hard walking around everywhere that I started getting really bad chest pain, my feet were getting redder and swollen. I found clubbing ahrd, as the next day my hangover on top of everything was awful that no parcetmol would help. I was finding it hard to make sure I eat, cook and clean and shop by myself. I really enjoyed my indepdence so i didnt want to go home. I ended up in A and E my cough got so bad, that i ended up collapsing in the shower, befroe an online job interview. Which I did not get which I dont balme them. I remeber thinking after a lecture maybe I should try and get antibiotics, but the lady at 111 was really cocnerned about my heart rate being 170, its the first time I ahd really clocked on how serious a high heart rate is. 8 hours, 2 ecg and a blood tests later they concluded I had an infection, doctor said i might have pots but told me to exercise more very helpful. I contiuined struggling, my mental health went down hill. I felt weak and incapable I just coudlnt seem to keep up with everyone else.
So I came home and was like oh i just need a break, maybe a gap year and travelling will do me good. I got unwell again and came down with mild pneumoia, which was awful, the coughing was so bad i could barely breathe, they put me on anti biotics. And the out fo hour gp was shocked by my heart rate, and urged me and my mum to push for a cardiologist to see me as soon as possible. I got better from the chest infection and moved my stuff out of uni, which was a somber occasion, as even though I was only there for 3 weeks, it really felt like home and i knew i would miss everyone. When I came back, i was sick again but i started to just get used to being sick at this point, even though vomiting is one of my fears. I sob my eyes out like a baby usually, but at this point its a bit like oh well here we go.
I contuined with my life for a bit, i deceid i was just be a baby, i was being dramtic. I was talking to someone at the time, and it honestly distracted me for a bit, until i started confiding to them on my helath issues and how i was just ignoring it for the now, to which they replied "but it kind of is serious though". Which at first I was like how dare you dont knwo me, but tbh now i look back they defo have a point. I came unwell again, but again stupid me ignored it and went to see my friends for the weekend which i loved but my body was like NOPE. I had to go hoem early as i was in so much pain, i got a temerpature again, and ther pain was o bad, and to be hoenst its the worst phsycial apin i ever expeirnced, i cried my eyes out because of the pain. The next dayI had my blood test and ECG, my blood test came up as mostly normal except from a slight low iron levels. I managed to get co-codemial and still made it to my work interview. The painkillers were good, i actually managed to eat a full meal without being in pain.I managed to meet 2 friends after that. Unfortutly I deciedto got to the shops to get hair dye which killed me off. I had a really bad epsiode, were i literllay ahd to fall to the fall, i was weatingall over my fitnes watch was going off for my heart rate at 156bpm. The world had dots in vission, i got chest pain. It evdiently passed enough for me to go on snapchat and tiktok to distarct myself. I was meant to have an ADHD check up appointment, and he kept ringing and i had to ignore it as i was in too much pain and feeling so sick i couldnt answer. I took my blood preassure and heart rate and it was quite high. evidently the feeling passed and i was just left with a tremor and a headache. I ahd to cancel on my friends which I hated . I hat how its consuming my life, that I have this constant anxiety over everything, it just all feels so unfair. And yet I keep trying to put on a brave smile to my mum, she already worries about me healthy, but even this I cant hide from her. The weekend i started to get ill again, so spent most of it bed and my body did this new thing where i sit up and vomit. Like yeah great body thanks for that.
Though the good thing about my collapsing epsisode is i managed to get an urgent doctors appointment finally with a doctor who took me seriously. He gave me magneusim, vitmain D and iron supplements to take and told me to drink loads of water and have more salts. I had to do a test to see what happened after sitting for 15 mins and standing for 15 misn at hoem measuring my heart and oxygen levels. And looking at referring me to a cradiologist or doing a review and treating symtoms. Which is amazing news, yet i find myself impatinet for answers, as I seem to keep getting sicker and sicker. But is this because Im worrying about it, but yet Im sure worrying doesnt caused excessive mucus in body and high blood preassure and low oxgyen levels. But I dont know guys, its a bit depressing. But my goals for this year are to get a diagnosis, learn to manage it, go back to therpay. Just because i think that taking to soemone about whats going on, who I wont feel like Im being a burden would be for the best. And then my goals for next year to go to greece, to start exercising again (with help im looking at phsyiotherpay), to go to uni, I might end up having to go to uni closer by, in an ideal world i would live out but close enough to go home if i was having a flare up. But even if i have to commute I can deal with that. Im looking at getting an apple watch and then my mum can get alerts if my heart rate is to high. Hopefully I will get to update you guys with good news at some point.
Love Amy x
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