Trying to do life when your immune system constantly lets you down

Back in my first blog post I asked my friends and family to describe me, as well as offering up what I also thought of myself. The adjectives were all on the postive side; energetic, fun, adventurous, and enthusiastic being the words to best describe my presence.

I like to think of myself as an energetic person. I always have done. I try to give most things my all. My job, my interactions with my friends… basically anything but housework. I like to bring a bit of sunshine to other people’s lives. I sing. I dance. Sometimes both at the same time, sometimes in public, and no fucks are given.
I can’t help it, my personality makes me do it.

Except for the times when I have no energy. The times when, actually, I can’t help doing anything. Anything at all. Some days I can’t give a single thing to anyone, including myself. Because, well…

Auto-immune disease.
Because the only thing tough enough to kick my ass and steal my energy and positivity is me!

My body is literally fighting itself. And it is so frustrating.
All day, every day there is a battle happening inside of my body that I cannot end. And some days it’s just so incredibly tiring that I can’t get off the sofa. Scary thing is… sometimes this can when be I’m healthy. I used to think I was lazy or unmotivated or both at the same time. What negative things to think about yourself, but no matter how much work I have to do, deadlines looming, things I have committed to… Sometimes I just can’t get up and physically do it.
But recently I’ve come to learn that actually, sometimes I just can’t. As much as I want to get up and do the work that needs doing, my body is just too tired.
And the battle is tiresome.
But it’s even more tiresome when you’re ‘sick’.

Beatrice the Biologist perfectly illustrates Autoimmune disorders in one comic strip.

I’m always ‘the sick one’ in my group of friends/family. It’s a role I fell into very early on and have had to become content with.
Trying to live life when you’re prone to illness is exhausting. It inhibits you and the commitments you make in so many ways. You want to commit to that netball league you said you were so interested in, but in reality, you proably won’t make all of the games because you’ll probably pick up an illness somewhere alongthe way and that usually puts you out of physical activity for two weeks. So, do you do it, or not?
You make plans with friends but have to cancel because even though your sickness symptoms have gone, you can barely walk the dog around the block let alone spend energy on a social outing. Do you go, knowing you’ll be worse off tomorrow, or do you cancel and feel like you’ve let your friends down yet again?
You want to commit to a new role at work but you know that, actually, you’re never going to be 100% so you might miss important meetings and the role deserves 100% effort and energy. Do you throw your name in the hat, or not even bring it up, just incase?

There are so many extra things you take into consideration when you have an autoimmune disease that others don’t have to think about. It’s so frustrating at times, because more than anything, you just want to be well. But you can never garauntee that you will be.

I’m a stickler for Tonsillitis/Strep Throat. For as long as I can remember I’ve always been gifted at contracting it and I’ve always had it pretty bad. Infact, in the past 16 months I’ve had 4 cases of it, and that’s not counting the times I’ve managed to ward it off (praise be!). I battled Chest Infection after Chest Infection after Chest Infection as a teenager. You see, when you have an autoimmune disease your body is fighting itself. It’s working overtime attacking your own body cells because it’s a little bit confused as to what is a virus or bacteria and what isn’t, as perfectly illustrated in the cartoon above. Thank you Beatrice the Biologist! So when you contract a sickness, your body is on the back foot. Instead of being at the start line poised and ready to race, it’s been arguing with it’s coach about something and missed the starting gun. Your immune system is weakend because it’s been beating up on you all day. And then you get sick. And when you’re trying to recover from sickness, you often pick something else up because your immune system is tired from working a double shift.

And sometimes these become the moments when you learn about the wonderful virus’ that are out there in this world, like the aptly colloqiualised name ‘the Devil’s Grip’ which I have recently had the joy of contracting off the back of a bout Strep Throat. Ditch one bacteria, pick up a virus to replace it.

Yep, that’s right folks, there’s a virus out there called the Devil’s Grip. I am offically more metal than you’ll ever be. An inflammation in the lining between the ribs, random attacks of sharp pain occur often making it hard to breath. Attacks come and go and don’t cause any harm, but as it’s name suggests, when it’s happening, it’s incredibly unpleasant. It really is like someone is gripping your insides, or giving you a quick stab inbetween the ribs with a pair or scissors at random. It’s also slightly awkward when you’re having a conversation with someone and randomly lurch forward and shout “ooooh!”. It certainly disrupts the flow of things.
Although rare, it’s not uncommon. I’m glad the GP had the knowledge of the disease, and that my organs are healthy (I thought my kidney was going to implode on me), but this illness is just another in a long line that makes life difficult to do at times.
Talk about your body kicking you when you are down. Or stabbing you, rather.

What is the most frustrating thing about being sick all the time is that it can come completely out of the blue. One day, you’re feeling fit, healthy and full of energy, you’ve been aceing life, you’ve made plans for the weekend and then the next day you wake up and BOOM. Your body laughs at you and then you’re out for the count, in bed for three days and still recovering over the next three weeks. It’s just so bloody exhuasting. And that’s how I’ve had to become content with taking it easy at times, even when you don’t want to. Even when there’s a pile of work (house or otherwise) looming. Because those of us with autoimmune disease know, if we rush back into things, into being energetic, something else will come along and potentially slap us in the face.

So for those of you healthy people out there, what can you do to help?
Well, the fact of the matter is, because our immune system is so shit, chances are you probably won’t pick up whatever illness we’ve got hanging about. I estimate that over seven years and the many, many times I was sick, my partner only fell sick twice that I can remember… And it was the flu or common cold, which I don’t usually get (I’ve got immunity to something, yay!). Sometimes I just want some company. I can’t go out, but perhaps you could come and spend some time with me while I do ‘nothing’ (craft)? Understand that we commit to things with the best of intentions but when it comes down to the day, if we cancel, it’s because we’re listening to our bodies. Support us, don’t secretly get mad with us. Trust me, we’re already mad and frustrated at ourselves. The frustration of not being able to do so many things is one of the biggest things about being prone to sickness all the time. We’re already being incredibly hard on ourselves about it. We need your support, not yout pity. Share with us. In my experience, when you’re stuck at home sometimes all you want is to hear a good story from someone else’s day. I can run on the fumes of someone else’s positivity and every little interaction helps. Tell us some good things while we sit in a cesspool of our own sorrow, it’ll do us a world of good.

So with all of that being said, I must ask an important question…
Do you think this means I warrant enough excuses to hire a cleaner? Because I could sure live without the negativty of housework in my life.

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