This is CVID post #2, following on from my last (pretty long) CVID post #1 where I talked about dealing with life before and after being diagnosed with Common Variable Immunodeficiency and my first treatment.
The post finished on the day after my first infusion and I was dizzy, exhausted, nervous, in bed, but optimistic.
All of the fears I had were lifting. I finally had treatment. The treatment I’ve probably needed for at least 10 years. I was going to get better in a few months.
This was the first day of the rest of my life!
And that’s really way too optimistic!
In reality, I was diagnosed with an incurable condition where my immune system doesn’t work like it should. It’s why I’ve always been more sick that everyone else, and the reason I’m going to have to receive treatment for the rest of my life and worry about my health from now on.
To be honest, I’ve realised (/been told) that I’ve probably been going through the 5 stages of grief as they are apparently really similar to the ways people deal with a diagnosis like this.
1. Denial & isolation
One of the reasons I didn’t want to tell lots of people straight away was that I was terrified (or hopeful – I couldn’t decide which) that the doctors would turn around and say, “Oops, you don’t have CVID. In fact, you’re fine! What are you whining about? Go home.”
TERRIFIED of that actually. I didn’t post on my blog earlier because I didn’t want to have to retract my statement and look like a hypochondriac idiot. As soon as the nurses put the IVIG in my arm, I felt like maybe it’s real (but still terrified they’ll change their mind at any point as there’s still technically one last test they have to do).
Anger at the world for being a massive douchebag to me in deciding how my life would go. I’ve had enough douchebags in my life, I don’t need *the world* to be another.
I was also getting annoyed at weird things that people did. My Mum was being TOO NICE. Why does she care so much?! Why is everyone saying this diagnosis is a good thing?! I mean it kind of is, but it’s mostly pretty shitty. You can admit that, it’s true.
Why did no one pick up this diagnosis years ago?! I’ve been sick my whole life, is it that hard to do a little blood test, just in case?! Dafuq bro, why didn’t you check?!
Should I have been the one to push the doctors to check? I mean, I’ve had a good idea I had something wrong with me for years.
Maybe I could have figured it out when I was less sick and with less damage to my lungs. What if I hadn’t moved around so much? Then I would have had a stable doctor who might have been more likely to see it.
This is probably well covered in my last post. I barely moved off the couch/out of bed for weeks, both sick and sad.
How is my life going to be? I could take a turn for the worse at any time in my life and be terribly ill. What about going to hospitals every month, that’s pretty shit. Will work still want me? Who wants a girl who’s legitimately likely to be sick more than anyone else working for them? I better be f***ing good at my job!
Will my friends still be my friends if I can’t party with them?
It doesn’t matter I guess, I’ll just sit alone in my room with a block of chocolate and watch Netflix forever.
Yea… I just got diagnosed yo. I think we gotta wait on this one. I don’t really accept it.
I don’t want to change up everything in my life for risk of being super sick. That doesn’t sound fair to me. No one else has to.
Nup. I’ll work on Acceptance.
But it’s not all doom and gloom boys and girls!
It’s just natural. No one tells someone that their entire life is changing, they’ll be getting infusions for hours every month and their future could be bleak, and expect them to go. “Oh really? Cool. Pass the salt please. Your hair looks great by the way!”
So two days after my infusion I tenderly got out of bed.
Thought I’d test my energy and everything by walking to the shops. The energy didn’t fade so I kept walking up the street. The energy was still there and I didn’t want to go home so I kept walking till I ended up sitting in a park listening to music. I was also nervous as I didn’t actually know how this infusion would affect my body, considering I had just spent a couple of days in bed and dizzy if I got out of it. I took it easy out of fear I would push it too far and potentially end up passing out in the park like a weirdo, so I headed home.
But I had energy. It was weird!
It was a really good weekend! I got a haircut, lunch with my friend and her parents, even had a beer! I was pretty stoked to feel a bit more normal.
I’m also still not 100% whether the infusion is what made me feel good, or the placebo effect. The weight lifted off my shoulders by having this momentous day finally come and go. The fact I can really only go up from here.
The feeling that I might be normal soon and I’ve taken that first step to get there!
I reeeeally wanted to get back to work!
They had been so supportive to the point it was almost feeling like I was almost taking advantage (obviously not, I just don’t like letting people down). And I worked that week!
I did not do a full week.
Had to leave early twice and work from home on Friday. Not a bad effort though! It was expected and probably would have been silly to think I could do 40 hours just like that.
I’ve been doing 40 hour weeks since then though, just making sure I do a day or 2 at home. Funnily the comfort of being home seems to replenish me and make me feel healthier and more energetic. It’s just way better to be in the office around people.
I was enjoying the lift in energy I seemed to have although I do seem to be in limited supply and if I use it all up too quick, I crash. Luckily though, that energy supply seems to be slowly getting bigger.
This phenomenon of having limited energy and having to use it carefully when you do have it has been well explained as the Spoon Theory by a woman with Lupus who is clearly much more sick than I.
I totally get it though! And can’t help but feel that that’s my future.
But we don’t focus on that.
It’s also really hard for me that I’m starting to get better.
I realise that doesn’t sound like it makes sense, but I was finding it easy to stay in and go to bed early and all of those good habits when I was physically drained and coughing my brains out.
I feel better, but I’m not better.
That’s an important thing I need to remind myself and my friends.
Just because I’m better than I was, I’m probably still sick to the point that lots of people stay home from work (I have a chest infection and sinusitis), but my standard for what is “sick sick” is much higher than most people.
If I went by most people’s “sick sick” standards, I would have been in bed for 3 years.
I’ve been on antibiotics non-stop since April and I’ve just had them extended for 2 more weeks (after being extended for 6 weeks, 6 weeks ago).
I guess my point is, if I go out and party and stay up late and exercise too hard, I WILL get really sick. I have to make serious lifestyle adjustments.
And it sucks.
Well, it is good in ways – I’ve been going to yoga, eating better, sleeping better, and all those sorts of things and my body is happy. But the FOMO is out of control. I seriously resent the fact that I feel “ok” but I can’t do the same stuff that everyone else is doing because I could probably end up in the hospital if I push it too far.
So what do good kids do when they’re told not to do something?
They do it.
Whoops! (I blame human nature…)
A couple of Fridays ago, I threw caution into the wind! Screw it! I feel good! I haven’t felt this good since the start of the year! I will party as if tomorrow will never happen. My infusion was in a few days anyway – I was about to get topped up with the goodness soon so does it really matter?
I danced with friends, I drank, I was convinced to do a shot, I had deep and meaningfuls in toilets. The usual.
I also kept reminding myself – “tomorrow you’re going to be very sick! Like really sick. Make sure it’s worth it or go home!”
It was totally worth it.
I vomited all Saturday afternoon and Saturday night until about 11pm. I wasn’t stomaching water and food was out of the question as it’d require standing for more than 10 minutes.
I had to order Dominos and spend over $20 on food I probably would throw up just so I could get it delivered.
That Sunday I hydrated, hydrated, hydrated! I caught up with my doctor friend, ate healthy food, and was terrified I’d feel that pressure in my chest or the feeling that I had been punched in the sinus that meant I had gotten worse, but amazingly, it didn’t come!
Totally worth it, but I probably won’t repeat that for a while. Not because of the disproportionately terrible hangover, but because it’s super risky to potentially take 10 steps back in my long-term attempt to get better.
The second infusion was coming up and I was excited!
I knew what I was in for so it was much less intimidating. It could only be a good thing right?!
Anyone that asked, I told them I was only scared that I might get side-effects from it being sped up, but it was all positive.
That’s why I was really surprised when I had a full-on panic attack in the supermarket a couple of days before it.
I was buying coconut water and a giant bottle of water for my pre-infusion hydration and something about that set me off.
I just started freaking out!
My chest tightened, I felt sick, weak and dizzy and just completely overcome with a panicky feeling that made my mind go into the clouds.
I had to act normal because I was in public but I didn’t know how. Should I leave? That’s weird, leaving your groceries sitting on the ground.
Why are there so many people around me and no one is helping me?! How can they not see I’m dying over here?! I wanted to sit but there’s nowhere to sit.
I decided to call someone but my mind was blank and not working properly.
I had already called mum that day and didn’t want to worry her – nope. I could call a close friend in Auckland – uhh he’s probably having fun somewhere and won’t want to be disturbed. I could call my best friend – she’s in London. Think straight! I could call my brother – technically he’s blood and said he wanted to be there for me when I was diagnosed…
It feels like being depressed, that cloud you’re in thinking that no one wants to help and you’ll only bring them down if you ask. So, so untrue and I think that is something I have to learn in case of future attacks.
In the end I called my brother as I felt he has to love me no matter what.
Poor guy, didn’t know that was what he had signed up for when he offered his help – his older sister calling him because she was in the supermarket and crying and having a panic attack for no apparent reason.
“I just need you to talk to me, just about anything. I’m just freaking out and I’m not sure why, I think it’s because I just got coconut water off the shelf” is not your average phone call, and he performed admirably. After a couple of minutes I could see straight again, I could stand properly and the cloud had lifted from my brain.
“Uhh well, thanks bro, I feel ok now so you can go… Sorry about that… I should probably keep shopping… Thanks!”
I’m assuming it was a combination of all of the negative thoughts about the upcoming infusion I had been setting aside in my optimistic manner just all collectively kicking me in the guts for funsies.
I felt totally fine after that and right up to the infusion day I was completely calm (if not a bit nervous).
The second infusion went well.
It was an hour faster than the first, at 3.5 hours, and less side-effects (woop!).
Once again, it knocked me out for a good day and a half and I spent most of that in bed with Netflix.
I even have a bruise from the IV! (You probably can’t see it, not at all impressive haha)
It could be worse.
I also went to work 2 days after the infusion and definitely had some effects still going on – like the computer screen seemed to be flickering and making me feel dizzy and sick, and concentration was taking all of my energy. However, by the afternoon I was feeling pretty chirpy so that’s good to know!
So far it does seem like an infusion has a 48 hour effect on me, but we’ll see how my body gets used to it (hopefully!) and maybe that’ll get better 🙂
Since then it’s just been a battle of the balance of life vs. health continuing. But what can ya do. I’m just rolling with the punches and hoping I don’t screw up too badly!
It’s all I can really do right now. And it ain’t so bad in the grand scheme of things!
This is post #2 of 2 following my CVID diagnosis and treatment.
Read post 1 “Charlie’s Very Irritating Disease (CVID)” here.