Note the 'For now' part of the original statement.
At this stage, so late in the game (in terms of CF), you notice a million and one things that are wrong with you. Every little ache and every tiny twinge is noted and analysed to within an inch of it’s life. Most things, luckily, just fade away or are easily treated, but other things persist. The problem with these things is that people think you’re being a hypochondriac when you mention them and doctors often overlook them.
When I had my first SVT episode and my heart rate was around 220bpm my doctor brushed it under the carpet saying it was ‘stress’. And the second time it happened. And the third. And by the fifth I was diagnosed with a heart defect that I’d had from birth that had reared it’s ugly head later on in life by chance. Doctor should’ve fucking listening to me in the first place and instead of having nearly 9 months worth of trouble over it, I could’ve been operated on within 6 weeks.
Now I’ve found a lump in my right breast and I’ve kind of been ignoring it. Because my weight is fluctuating so much at the moment, my boobs are constantly changing, so I put it down to that. Plus my breast tissue has always been a bit abnormal (but fine according to all tests and scans and stuff). But for the last 2 weeks now I’ve been getting painful twinges in the area underneath the bump and my friend reminded me that being checked out is never a bad thing, so when I go to the hospital I’m gonna get it sorted if it’s the last thing I do. It’s probably nothing to worry about but better to be safe than sorry, right?
I’m sick of doctors looking at me like I’m some kind of idiot whenever there’s a problem - I may not have a medical degree but I sure as hell know my own body better than you do sunshine, and I spend enough time in hospital to know as much as the average nurse does about identifying problems with a patient that require referral to a doctor. I could also tell you about a million and one drugs that help a million and one ailments - shame I don’t have the authority to deal prescriptions…
I really do sound like a hypochondriac after the anorexia based post yesterday and the general health complaints of the here and now (throat infection, multiple chest infections, mental health issues, loss of apetite, chronic fatigue, the list goes on and on and onnnnn) BUT sadly this is the sort of shit you face when your body starts to shut down. Everything fails.
PLEASE WATCH THIS
And get wise about organ donation kids! Just raises a bit of awareness and it’s quite a cute parody.
Organ donation is so important, I’ve always thought it, and I’m just sorry that it’s taken me to need one to promote it more. I think people think I’m asking them to join the donor register for my own benefit when actually there are so so soooo many people on the list that need their help.
You can donate all organs, tissue (bones, cartilage, heart valves, etc) and corneas (which is basically ‘the skin of the eyes’) and help up to 10 people at one time if you are unfortunate enough to pass away. Now you may think I’m saying that too nonchalently, but people die in accidents and for various reasons every day which is a horrible part of humanity that we all have to bear, but if we use an early misfortune to save up to 10 others from early misfortunes, surely that’s a good thing right?
I wanted to start giving blood a while back, but due to my condition I’m not allowed to and so I actively decided to join the donor register, not instead, but so that I felt I was giving something back, ticking all boxes and saying yes to giving everything away. Now due to my condition not all of my organs will be able to be used for transplantation, but some will be, and others should be available for scientific study, and I’m ok with that.
You can find out what conditions prevent you from joining your country’s organ donor register by checking their site - the only conditions that completely rule you out from donating are CDJ and HIV and there is no age limit on joining the list. Specific religions say that the body should be buried as a whole, and as much as I respect people’s religious beliefs, aren’t times changing? We all interpret areas of religion that we want to interpret, so why not give your organs when you pass and save a life? There is a HUGE shortage of asian donors in particular and almost none of the asian community are getting the right organs.
A large percentage of people waiting for transplants die waiting. So please sign up today, and don’t forget to tell your family your wishes - they are the only ones that can sanction them after your death, whether you’re a registered donor or not. Thank you!
There’s a horrible stigma over here in the UK with people not visiting the doctor when they’re unwell, for fear of being embarrassed because what they have is actually, in the grand scheme, nothing to worry about. You get a lot of people complaining of aches and pains that don’t see a doctor because it’s ‘been going on for years’ or people that simply ignore them.
Don’t get me wrong, being a hypochondriac isn’t the way to go (I’d even go as far as saying that’s the worst thing for your health) but ignoring recurring symptoms early on is a massive rookie error. People tend to leave going to the doctors until something gets really irritating or bad in a way that’s obvious to other people, which can often mean it’s more difficult or even too late to treat. A guy on my ward at the hospital was telling me of a persistant cough and pains he was having in his chest for years - by the time he went to the doctors his lungs had filled with cancer and there was nothing they could do for him. He was on the respiratory ward for pain relief I think as the nursing home he was in didn’t know what to do with him, which in itself is atrocious.
The emergence of programmes like ‘Embarrassing Bodies’ has hopefully kickstarted more of the UK using their (massively over payed) GPs for all kinds of conditions, although the name of the show is an absolute horror if you ask me - they regularly say on the show that you shouldn’t be embarrassed to go to the docs but are on a programme about embarrassing bodies? Madness. Anyway, you really should use the NHS to your advantage if you’re in need of treatment (no other country has the same privileges!) including things you can home treat. Example: it’s all well and good buying a verruca removal kit but at the end of the day the doctor will remove it far more quickly and prevent a spread. This in turn will save you money and possibly the NHS money if you decide to return when it’s worse, using up more of their treatment. Same goes for smoking - get the NHS to help you quit and you’ll save them (and every UK tax payer) money before you get COPD or lung cancer.
I’m not saying that you should run down to the GP next time you get the sniffles, but if something won’t go away don’t leave it, yeah?
As all of you know, I’m quite open when it comes to my health. Very in fact. I will happily talk about it with anyone that genuinely takes an interest and wants to know more about it.
However, I absolutely cannot stand people that ask ‘why are you in hospital all the time?’ without even saying hello or acknowledging that I’m an actual person. Those kind of people are people that don’t really know you but know who you are and just want to know because they’re nosey and feel out of the loop, they don’t actually give a shit.
So annoying. If you want to ask about my cf and why I’m in hospital go right ahead, but good god use some manners.
I’m getting over excited at the prospect of starting again (DMU, film studies, straight into year 2 - and so many societies?!!!) and distraught about potentially leaving my Leeds life behind. It’s like one massive contradictory pile of emotional stress. I’m hot flushing and bouncing on the spot with nervous energy and everything. I’ve told myself to ‘CALM THE FUCK DOWN’ and for some reason that’s not working. So in my infinite wisdom, I turned to the bucket of flumps. I have eaten half the bucket of flumps. I’m now bouncing off the walls, feeling sick and contemplating life all over again.
I would just like to point out that DMU barely know I exist yet, let alone having thought about accepting me. And leaving Met isn’t even confirmed. I may defer my second year. But. Still.
This is all unnecessary for nothing at present. I think it’s just a distraction from the other crocks of shit that I’m continuously mulling over while stuck within these 4 walls. I feel like I’m being tortured, slowly, and mentally, by myself. It’s almost like SAW: The Documentary is being made and I’m the victim.
Fucking hell Emma.
I need a hug.
Considering my shit weight, anemia, glandular fever, extreme fatigue and need for oxygen, my doctor has been relatively positive and has told me the best news I’ve heard in ages - I am no longer growing the bug that would prevent me from joining the transplant list if the chance ever arose. Chuffed doesn’t cover it. Now to get fighting fit! BRING IT ON!