Meet Charlie: A Rebel with a Worthy Cause

charlie2I’m Charlie, a 27 year old working in digital marketing in Auckland, NZ. I’m a big fan of good coffee, good beer, good wine, good food – and lots of it! I was recently diagnosed with Common Variable Immunodeficiency and am trying to come to terms with it, sometimes by blogging about it.

This is my everyday #invisiblefight with Common Variable Immunodeficiency (CVID).

It’s only been 2 months since I was diagnosed with Common Variable Immunodeficiency (CVID) but it feels like a lifetime.
It has been 2 months of self-assuring moments of realising that I wasn’t crazy in thinking I had something wrong with me. It has been 2 months of changing my lifestyle. It has been 2 months of getting used to the treatment that I will now have to get for the rest of my life. And it has been 2 months of frustration, anger, resentment, rebellion, optimism and some serious self-reflection.

CVID is a rare, incurable primary immune deficiency that affects 1-2 people in 50,000 in New Zealand. My immune system hasn’t developed or matured properly and doesn’t create enough antibodies to keep me healthy. Because of that, I’m susceptible to bacterial and viral infections and have a 20% chance of getting an autoimmune disease.

I’ve been diagnosed earlier than the average CVID patient, at 27, which means I actually am lucky enough not to have any serious organ damage from recurrent infections, and I am less sick than many of the incredibly ill people I have been in contact with since.

Even so, I am sicker than the average person, more often than them.

I’ve been prone to UTIs since I was very young, and had to undergo lots of tests to have it blamed on a duplex kidney. Looking back at high school, I was always ill more often than my friends, and it’s only gotten progressively worse since then.I get the unusual stuff too. Like swine flu, glandular fever, shingles, extreme reaction to vaccines, pneumonia, and weird skin infections.
If it’s going around, I’ll probably catch it and if I get run down, I get sick. Every time.

 

med-drawerI have had a cough for about 3 years.
This shocks a lot of people. It actually shocked me when I tried to work out the last time I wasn’t at least a little bit sick and could back-track my cough to at least September 2012.
I got bronchitis in April this year, which developed into pneumonia. The pneumonia slowly cleared but apparently I still have bronchitis 5 months on, after being on antibiotics for that whole time.
I was also told I had chronic sinusitis. Judging by everything I hear, that’s probably going to be ongoing, on and off from now on, as it’s extremely common in people with CVID. I was also recently diagnosed with mild bronchiectasis in my left lung, which is also incurable and a result of all my lung infections (and ironically makes me more at risk for lung infections). Since it’s mild, this is fairly manageable though, luckily!

 

As a full- to part-time bar tender for about 6 years (until earlier this year when I had to give it up because of, you guessed it, health issues) I’ve had quite an active social life since I was 21. While I’m definitely at that point in my life when I’m starting to wind it back a little bit, I was definitely planning on doing it on my own terms but that choice has been whipped out of my hands.

I have had to rethink my entire life to concentrate on getting better and staying better which is MUCH easier said than done. Suddenly, it’s like everything is trying to make me sick. Going out, staying up late, drinking, eating badly, sugar, not exercising, not washing hands, other people not washing their hands, sick people, large groups of people, sharing drinks or food, my computer mouse and keyboard, my damp room, anything that’s not clean enough. And I have to try harder to do all of the good things. Exercising, apparently fats are good now, but not too much, exercising, sleeping well, staying in, avoiding people who seem sick, keeping warm, dehumidifying, antibacterial everything, never sharing again, being a perfect example of a human being, also, that might not work either.

 

It’s so hard to explain how something like this affects you mentally, on top of the slightly more obvious sickness that I always have.

You know how much it sucks when you’re so sick that you can’t work for a few days. Then multiply that by 5 months, or a year, or 3 years, or 10 years. That’s me. But I guess from being ill so often, my resilience in that area is the one part of my body that is actually quite strong.
People comment on my unusually high level of optimism and how little I complain about being sick. It’s definitely not from not struggling, it’s probably from the fact that I’m always struggling and would never shut up if I did complain. Also that I don’t want to acknowledge that I’m struggling and would rather focus on the silver lining of a situation. Or maybe it’s that I live in denial and want to eat and drink and play and pretend that everything is fine.

I have actually made some adjustments since my diagnosis, and a lot of it is around acknowledging that I’m not well and that it’s ok to feel sad and angry sometimes, but to also channel that into positive change.

I was working out at least 4 times a week before I got bronchitis/pneumonia. I was doing HIIT classes that would push me to the point of wanting to throw up or pass out, I was doing cardio, strength and flexibility training. A half marathon was coming up and I made an elaborate training schedule to prepare for it. 10987358_10155301022815597_7807250254233853394_n All of my hard work was completely ruined by my lungs deciding to stop doing what they’re supposed to and I spent days/weeks in bed instead. I watched the marathon come and go recently with a heavy heart.
But after getting a little better and being able to start over, I’ve realised how awesome yoga and BODYBALANCE is for getting me back on track and I’m loving it so much. I have also put a lot of effort into fixing my sleeping habits, as it’s such a vital part of life that we tend to take for granted and my sleeping habits were textbook terrible.

Then there’s the fact I’m now working from home periodically, going to physio (on my neck and soon on my lungs), getting treatment (which knocks me out for about a day), going to counseling, attempting meditation, blogging, and using all of my mind power to say “no” to social invitations that I KNOW are a bad idea (despite being able to see my favourite bar from my bedroom, that my flatmate owns, that my fella manages, that all of my friends drink at). I’m even going on a sugar-free “diet” (it’s not a diet as such – sugar’s bad and I’m cutting it out) next week for 3 weeks to see how that goes.
drip2

It’s all part of the process to becoming an awesome Charlie 2.0.

But this is where the problem is – if I was perfect and became a Charlie 2.0, then I got sick, it’s in no way my fault, it’s my immune’s fault. However, it does feel like I literally have to revolve my entire life choices around how sick it could make me, and what the payoff is if I do it anyway.

Now that I know that I have CVID I also feel this pressure to do the ‘right thing’, because if I do the ‘wrong thing’ and get pneumonia again, I can already feel the fingers pointing at me from all directions saying “you knew you have an immune deficiency, what were you thinking going out drinking with your friends?!”
It feels so unfair for me to feel like I can’t do the same things that some of my healthy friends do, then if I try be a part of it, I could be the one who gets in trouble for being reckless.
It’s like every day I have a petulant child inside me, wanting to do the things I shouldn’t, regardless of the consequences – and I’m fighting her every day even though I’d much rather just do it.
I am still pretty resentful, I won’t beat around the bush. But it’s only been 2 months, I’m sure it’ll get better.

As I say, positive, positive, positive. It’s not terrible, really.

The positives are that I’ve learned more about my body, and gained a sort of empathy that I didn’t even know I was missing. People have been telling me about their unique or rare diseases and illnesses and I can’t believe how ignorant I’ve been to these people’s quiet suffering.
I am gaining a broader understanding of autoimmune diseases and other chronic illnesses that I had barely heard of 2 months ago. I read research and am learning all about blood, plasma (now that I rely on donations) and the immune system. And in the next 30+ years I bet I’ll go to the doctors/hospital enough to be more knowledgeable than the people that treat me. I always did want to be a doctor (without having to do any of the actual doctoring).

It is weird having an invisible illness. My illness is really that I’m ill all the time, and now I have a lung condition that means I’m even more likely to get ill.
I’m living day to day trying to get better which has been an uphill fight for the last 3 years, but now I’m finally getting the treatment I need to slowly get my antibodies from ‘nearly none’ to ‘a healthy amount’ so maybe I’ll get there in the next few months. Who knows!
In the meantime I’m trying to do what I can to get and stay healthy while keeping in mind I’m just human too.

Charlie bio picEditor’s Note: If you want to hear more from Charlie, you’re in luck. Her blog, The Letter C, continues the whit, honesty, and great writing of Charlie over a broad range of topics. You can also read the full story of her diagnosis and first IVIg.

Don’t forget to drop her a kind note thanking her for taking the time to share Invisible Illness Awareness on Patient Worthy!

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